There is no better time than summertime for toddlers who are blind or visually impaired to begin to learn about the outdoors and playing outside. In this excerpt from the book Reach Out and Teach: Helping Your Child Who is Visually Impaired Learn and Grow from AFB Press, author Kay Ferrell provides tips for families and professionals on making outdoor play safe, fun, and a learning experience.
Depending on where you live, your child might not go outside without you. If you are lucky enough to have a backyard, however, you will want to encourage your child to go outside by herself. But, you also want to make sure the environment is safe.
Don't avoid the neighborhood playground. Playgrounds are great opportunities for making friends and trying out motor planning. It's also a good way for her to become familiar with playgrounds in general, so she'll be better prepared for recess and other activities at school.
How are you encouraging your child to enjoy outdoor play this summer? Share your ideas in the comments section!
In honor of Father's Day, we asked Alabama NAPVI rep David Hyche to share his thoughts on parenting a child who is visually impaired. We hope all of you dads are having a wonderful weekend with your children. Happy Father's Day!
One of the biggest fears I have had since I learned that my daughter was blind was that she would have to sit in her room and not be able to participate in life. This could not be further from the truth. Now that she is eight she has participated in and enjoys activities on par with or even to a greater level than many sighted children. Much of this can be attributed to her adventurous spirit and outgoing nature. This is great but there are also many times when we have to work hard to find ways to keep her involved and interested due to her lack of vision.
Television and video games are both a very small part of her life, and our family has greatly reduced the amount of time we all spend in front of the TV thanks to Rachel. Be careful what you wish for, though. Not having the TV or X-Box babysitting service means that you must interact more with your kids.
I was a bit older than most dads when we adopted my kids so I don't judge. If I had been in my early to mid-20s when Will and Rachel came along I would not have been able to spend nearly as much time with them as I do now. I would not have been as established in my career and work would have taken much of the quality time I have with them now.
Rachel really only watches TV or plays video games when she has someone to interact with. She likes for you to describe the visuals or to discuss the movie with her even if it is descriptive audio. I try and get both kids outside to play every day when I get home, even if it is dark. Movement and exercise are always a challenge for a blind child so I want Rachel to be active every day. I have seen many blind adults with poor physical fitness and poor posture and I want to develop good health habits for her now.
To keep Rachel active I have to be very creative with the kids. She doesn't participate in neighborhood baseball, basketball, Frisbee, soccer, etc. Another thing I have noticed with Rachel is that her friends will be playing with her and then based on a visual clue they will all run to another part of the play area and leave her standing. The sighted kids pick up on whatever is attracting the kids and take off. I don't blame the kids, and it is not reasonable to expect them to always remember to slow down and tell Rachel we are going to the swings as they take off like a frightened herd of gazelle.
Rachel, however, gets frustrated and often feels left out. I see her sweet friends try really hard to keep her included but when kids get together and play, things move fast and she often gets left behind. We were at a birthday party a couple of weeks ago with a mildly low vision child and her 20 or so school friends. Rachel did not know any of the friends so after she was introduced the kids started playing and pretty much ignored her. She has excellent self-confidence and is outgoing but she does get frustrated when she cannot fully participate in activities.
This past weekend it was hot and I had to work hard to keep my kids entertained and to avoid them assaulting each other as bored siblings tend to do. Friday evening we decided to take the plastic baby pool and place it at the bottom of the kids' slide in the back yard. The kids started sliding into the water and had a great time for a while. This got old so we added shaving cream to the game by spraying it on the sliding board. This increased the velocity of the kids and made the game more fun.
We then tried crawling up the slide while I sprayed water on it and the kids would slide back into the pool. The last thing we tried involved the kids sliding down the slide while sitting in a plastic tub. To make this reasonably safe I waited on the far side of the pool to catch the kids as they slid across.
Saturday we decided that we would set up the slip-n-slide in the front yard. We do this quite a bit and my kids are now large enough that a slip-n-slide lasts about 30 minutes before it rips. Another problem with the slip-n-slide is that Rachel will sometimes miss it all together because they are fairly narrow. This sounds terrible but it is pretty funny. Her brother and I laugh with her and it doesn't seem to bother her a bit.
We now stake down a plastic tarp and turn a sprinkler on it. The tarp is much wider so she doesn't have to be as accurate with her runs.
This works great but as you can probably surmise; it ain't fast enough for the kids. We next go to dishwashing soap on the tarp which does increase the speed quite a bit. When this got old, we decided to blow up an air mattress and let the kids run and dive onto the mattress and slide. The first time down, my son Will told Rachel to sit on the front of the mattress at the top of the tarp. Will then ran and dove onto the tarp. The kids flew down the tarp and scared me to death when they made it to the driveway and barely stopped before hitting it. I then put a piece of grass carpet I have at the bottom of the hill to stop them before they reached the driveway.
These activities are great fun for the kids and we try and use our imaginations to come up with new ones all the time. Some of this might seem a bit dangerous but these things aren't really much different than things kids come up with on their own and do. At least I am there to minimize the risk for injury.
Among the hundreds of hats worn by parents of students with visual impairment, the "advocate" cap can certainly seem like an overwhelming one. However, advocacy may be less overwhelming when you realize that speaking up and making a difference is something parents do naturally. Advocating at the state and national level is just an extension of the good work you're doing every day, and — as Helen described — even one person's actions are worthy and worthwhile.
The American Foundation for the Blind (AFB) has launched a national campaign to improve our nation's special education system so that the needs of students with visual impairments are better supported. Our proposed amendments are contained in the Anne Sullivan Macy Act, and we are currently seeking senators and representatives to express their support by becoming sponsors to this important bill. Over 40 organizations are joining with AFB in supporting this act.
Based on current Child Count regulations in IDEA, many states under-count students with visual impairments because they do not count students who also qualify in other categories. A student who is identified in the "multiple disabilities" category could not be counted in the "visual impairment" category. The Macy Act corrects this by requiring states to submit a total count of students with visual impairments, regardless of whether or not they qualify in other categories. Accurate counting of students will lead to better provision of services and resources.
Returning to Helen Keller's declaration, "I cannot do everything, but still I can do something," we are asking parents, teachers, and other advocates to take just a few minutes on June 27th (Helen Keller's birthday) to participate in our National Call-In Day for the Macy Act.
If you have questions about the Macy Act or want to know about how you or your organization can get involved in this and other advocacy efforts, please email Mark Richert, AFB's Director of Public Policy.
We have also invited representatives from many of the national organizations for specific eye conditions such as Albinism, Leber Congenital Amaurosis, Glaucoma, Anophthalmia, Microphthalmia, Hermansky Pudlak Syndrome, and Deaf-Blindness to participate in the program.
This is an opportunity for you to learn more about raising a child with visual impairments. Learn about our three major keynote presenters and the workshop session topics and speakers, all of whom are experienced parents and professionals in the vision and health fields. They will share their knowledge with you, whether your child is a newly diagnosed infant or toddler or a teenager preparing for his or her future.
The Children's Program also offers a variety of interactive opportunities for all ages including siblings. A few of the activities being organized for your kids are:
On Friday during the day we are offering special pre-sessions to include a seminar for NAPVI Affiliates and Parent Leaders; focus groups for Bridge Multimedia Audio Described Television programming and for www.FamilyConnect.org; a three-hour session with Christine Roman, who will give an overview and strategies for working with children who have CVI. The Carroll Center for the Blind has invited parents and children to come and visit their agency's programs with a light reception at their campus not far from the Boston Marriott Newton Hotel.
These are just some of the highlights for the conference program and we hope it entices you and your family to plan your summer vacation and join us in New England!
AFB's CareerConnect program manager Joe Strechay recently had the opportunity to speak with Charlotte and ask her some questions about how she participates in sports, and what advice she would offer to other teenagers who are visually impaired. Charlotte had the following to say:
We are delighted to welcome Greg Botting as a guest blogger today, writing a tribute to his mom in honor of Mother's Day. Happy Mother's Day to all of our wonderful FamilyConnect moms!
By Gregory P. Botting
If there ever would be an award for "best mother of a child with a visual impairment," I believe my mother would qualify as a top contender. However, before I say why my mother in particular would be a top candidate for said award, I should probably go into a little background about myself and the remarkable woman who is my mother.
My name is Gregory (preferably Greg) Botting, a blind college student from Ionia, a small town in southwest lower Michigan . . . Sort of. (I was never very good with pointing out where I live on my palm.) Born in 1994, my blindness was primarily caused by my premature birth. My mother, Gwen Botting—rather predictably—needed time to come to terms with my being blind, but very quickly decided that the best course of action was to be as supportive as she could be. By October of '94, I was being visited by the local teacher consultant, and he would often tell my parents things off the record he technically should not have.
I rapidly progressed in learning, once I started school; in fact, my mother has said that my elementary school teachers had never seen a child as eager to learn as I was. This, perhaps, was motivated by my parents, particularly my mother. She was somewhat of a Renaissance woman, good at almost anything she put her mind to—gardening, baking, teaching music or informing myself and my sister about worlds impossible to reach except in books. At the same time, she presided over MAPVI, the Michigan chapter of the National Association of Parents of Children with Visual Impairments. This continued through elementary, middle, and most of high school; my mother left her post in September of 2011.
All throughout my time in K-12 education, my mother was a constant advocate, both for myself and for other students. In particular, she advocated for me NOT to waste my time taking lessons from an Art teacher who clearly did not want me in his class. She also advocated for me to be able to attend my Physical Education classes while in elementary school-and actually be involved. So many times, blind and visually impaired students are made to remain on the sidelines of the gymnasium because teachers do not believe they can do what the other students can. True, there must be adaptations made to some things, and some sports are not very practical—tennis or badminton for example—but that does not mean blind and visually impaired students are incapable of being physically active.
As I got older, my mother began to advocate for other students; telling parents about her advocacy with me, going to IEPs and the like. In addition, by my entry into seventh or eighth grade, she had begun to become heavily involved with Camp Tuhsmeheta, an overnight camp for blind and visually impaired children about 30 to 40 minutes via car from our house. The camp had provided a way for me and other students to maintain our skills during the months we were not in school, and it was very near and dear to my family.
Though I had by this point taken on responsibility for a good portion of what I needed, my mother tirelessly continued to advocate for me.
She advocated for me to take French all through high school—an endeavor which was not as successful as we hoped because of the machinations of the school board. She also kept advocating for students in districts which were being particularly difficult. I can clearly remember her helping a student in the Upper Peninsula at one point.
As I entered my Junior year of high school, my mother felt it was time for her to move on. By this point, Camp T (as we called Camp Tuhsmeheta) had fallen on hard times. Also, she, my mother, was tired. For over a decade, my mother had been advocating on behalf of parents and blind children, and now she needed rest. At the MAPVI retreat that year, she resigned, passing the torch to a parent from Ann Arbor on the east side of the state.
Yet, six months later, my mother ascended to the directorship of Opportunities Unlimited for the Blind, the organization that had been running Camp T for a number of years. She strove indefatigably to gain funding for camp sessions, hire excellent staff, and justify to the state of Michigan what the value of this camp was and is. In this endeavor, she has been engaged nearly fourteen months.
She is tenacious, tireless, indefatigable and iron-willed in her advocacy for the blind and visually impaired children of Michigan, particularly Camp T, which has helped so many. Despite all the challenges she has, does, and will face, she does not give up. She is, in my opinion, the best mother that any blind or visually impaired person could wish to have.
We are so pleased to welcome Jeannette Christie as a guest blogger today, writing about her very last IEP meeting and the emotions it raised.
We always welcome guest bloggers. If you are interested in sharing your story with the FamilyConnect community, please write to email@example.com.
Today was our last IEP meeting. Going into the meeting, I was very excited that I didn't have to sit through one more ever again. I do have to say that in all the years of IEP meetings we were pretty fortunate that they were pretty much smooth sailing. I know that many families unfortunately can't say the same.
So as I am sitting through the meeting and everything is going well, we are discussing Thomas's goals and plans after graduation. I don't recall exactly how, but I started talking about how Thomas came to me when he was in the 4th grade and in a mainstream setting, and he says to me, "Mom, I need to be in a school where everyone is like me." So, the waterworks begin. It truly caught me off guard that I became so emotional.
I don't believe that it was just about how my son felt, and how much he had gone through, that he needed to be with other visually impaired kids. I believe that it was the realization that my little boy was a young man now, and I can't make decisions for him or protect him like I have all these years. I would fight the battles over the years, speak up on his behalf. Now he enters the real world, and whatever path he takes—college or looking for employment—I have to sit back and just support him.
For more than 20 years, NAPVI and the National Eye Institute (NEI), part of the National Institutes of Health, have been working together through NEI's National Eye Health Education Program (NEHEP) to promote critical eye health messages, including low vision. NEHEP also contributed a list of Common Questions Asked by Parents to FamilyConnect. Now, NAPVI and NEI look forward to broadening their partnership by collaborating on additional eye health efforts.
NEI established Healthy Vision Month with the goal of making all Americans aware of something the NAPVI community already knows: the importance of overall eye health and early detection and treatment.
NAPVI and NEI are also working together to promote NEI's free resources for children, including:
Please join us this May and throughout the year to help make eye health a priority across the nation.
How are you talking to your children about what they want to be when they grow up? Will you be taking your daughter or son to work today? We would love to hear about your current or past experiences in the comments, and we always welcome guest bloggers. If you are interested in writing for the FamilyConnect blog, please write to firstname.lastname@example.org.
When my son was in high school he loved computers and decided that he would work in this field someday. So one day I took him to work for a career education experience since I was working as a Computer Systems Manager and Analyst. After a day in the office with me he'd decided computers might not be in his future because he realized he didn't want to work in a cubicle for 20 or 30 years.
That work day experience was good for him and kept him from going into a field he would not have been happy with. After earning a degree in advertising from the University of Florida, it turns out that he does do some computer work, but as part of a bigger career in home renovations. That day in the office with me helped him to see he would be happier working with his hands than sitting in a cubicle. Not only does he renovate homes, he enjoys being a handy man, tree cutter, and more. He'll cut your tree, install your computer, wire up your routers and switches, and build shelves for you to put your gear on. He's very good at what he does and is able to stay busy.
He has built some wonderful braille book shelves for my music books and built shelves around our front fireplace that look like they were there from the beginning. And yet, in the same breath, he's one of the very best at working with computers. He's good with blind people and understands the software even though he thinks it should do more.
By going to work with me that day, my son found what he did not want to do, which helped in the process of learning what he did want to do with himself. I try not to brag on him too much, but it's hard not to when he is this good at his job. He's put his 34+ years to good use!
I know my brothers and I still speak of the adventures and experiences we had traveling into New York City early in the morning via car or bus, as two rambunctious young twin boys with their older brother.
It was all so exciting to us. We traveled into the city, arriving near his office building at 42nd Street & Lexington. The routine usually involved a stop at the coffee shop below the building to get breakfast to bring up to the office.
Then we would travel into the building, check in, and then ride up the elevator to what I remember as the fortieth floor of the building. As we exited the elevator and entered his area of the office, we would find a span of desks, and sometimes meet someone who worked with or for our father at the company. Typically, there were very few people there on a Saturday, but on occasion we would meet someone working at their computer. Our father would offer us a preliminary tour of the office, especially where the restrooms and such were located. Our father's office was the home base for us, and we would spend the day with him.
Even if we didn't totally understand what he did, I would say we had a general idea. He was reviewing facts, figures, and accounts. He oversaw the accounting for the company. I know he was quite patient with us, and we were a handful during these adventures. Our father worked a lot of hours, but this truly provided a glimpse into what work was for him. We all felt this was the expectation for us later in life. We would work in an office somewhere, and hopefully New York City.
We learned about the telephone system, computers, typewriters, the water cooler, lunch break, desks, offices, swivel chairs, and most importantly the supply closet — all of the cool pens, highlighters, paper clips, Post-It Notes, and rubber bands were located in there! We learned that the more important that your job was at the company, the bigger your office got. A few years later, we saw our father's office grow, and he got a mini-fridge in it — how cool was that? Also, the view from the window changed as he moved up in the organization.
I also may have memories of my brothers and I having rolling chair races through the empty hallways, we may have gotten into trouble a few times — just a few. It was so neat for us to experience what our father's day was like, even if on a weekend. Now, it wouldn't have been the same during the week. It would have been quite a bit busier and more crowded.
My brothers and I also spent time at our mother's office growing up; during that time she worked in real estate. We experienced the different aspects of her job, ranging from answering calls from buyers and sellers to preparing houses for a "showing." We learned a lot about what is expected in work from our parents and visiting their job sites.
I think that "Take Our Daughters or Sons to Work Day" is great, but there are many opportunities to do it. It may not be open at every workplace, and I don't think it should be a routine because you may end up causing issues at the workplace. Although a workplace is a great place to visit, it is not a daycare — unless you work at a daycare, and they may still frown on it, too. I think children need to be aware of the expectation of work — they should expect that they will work! There are opportunities to point out jobs and tasks throughout everyday life. Make it the norm. Have your children ask about different jobs (though maybe not when there is a huge line at the grocery store and the guy behind you is groaning in frustration).
AFB CareerConnect offers an opportunity for kids and adults to explore careers and read stories about adults who are blind or visually impaired and their jobs. These stories are part of the "Our Stories" section of CareerConnect, success stories about CareerConnect mentors and other people who are blind or visually impaired. You and your children can explore careers every day with the ease of surfing the Internet. But, there is no substitute for experiencing it firsthand.
So I strongly suggest that you find out if your workplace allows you to bring your son or daughter to work, and take advantage of the bonding experience and life lessons — you never know, he or she may be introduced to their future career through you or your coworkers.
I know throughout our childhood, my brothers and I were provided different tasks to complete that related to my parents' jobs, such as stuffing mass amounts of envelopes, distributing fliers in a neighborhood, helping prepare a house, and so on. I am not talking about breaking child labor laws or enlisting your kid in a sweat shop, but finding small tasks that they can help with on occasion. I know we felt good about completing them and helping our parents. Not always—maybe "He-Man" (1980s cartoon) was on—but we got over it. I barely remember those cartoons, but the experiences with my parents' work live on vividly. It's time to make work the expectation, and be open about it.
I am delighted to introduce Judith Lesner as our guest blogger, to report on a special project with Parents Advocating for Visually Impaired Children (PAVIC), NAPVI's Philippine affiliate.
In September 2009 Susan LaVenture and I attended the PAVIC Congress in Quezon City, Philippines. I have a long connection with the Philippines going back to my serving there with the Peace Corps from 1963 to 1966. I was planning a trip back to visit my town there when Susan told me about the conference. It was obvious that I was meant to attend as it was right around when I had planned to make my trip.
Parents Advocating for Visually Impaired Children (PAVIC) is NAPVI's Philippine affiliate and the sponsor of the three-day conference. At the conference there were teachers of the visually impaired, parents, and administrators from all over the Philippines. There were also participants from Malaysia, India, Indonesia, and other southeast Asian countries as well as representatives from the United States.
At the conference I was cornered by Menchu Sarmiento who was then the executive director of the Philippine Airline Foundation. If I would gather books, equipment, and toys for Filipino children who were visually impaired, the PAL Foundation could transport them to Manila for free and she would distribute them through the foundation.
I was not particularly looking for a new project at the time but Menchu can be extremely forceful and insistent. So before I knew it I had agreed to gather and send books, equipment, and toys.
And so it started. With the help of the California Association of Parents of Children with Visual Impairments (CAPVI), I became extremely skilled at scrounging, scavenging, and begging. And eventually, I filled the first two 20" X 20" X 20" boxes and with the help of Dottie Bridge, Board Chair of Blind Babies Foundation, we got the boxes to the San Francisco airport and to the Philippine Airlines Ticket Counter. This was the first of many trips that Dottie and I made to the airport.
The over 25 boxes that we have sent came from the combined help of CAPVI, Blind Babies Foundation, California School for the Blind, Foundation for Retinal Research and many different individuals who contributed braille books, equipment, toys, and money. The content of the boxes were distributed by Menchu to PAVIC as well as various other schools and organizations serving children with visual impairments. They sent us pictures of the children with the toys, books, and equipment, and many grateful thank you letters.
While our students with visual impairments here in the U.S. are exploring all the new technology available to them, those in the Philippines still are short of braille books, braillers, slates and styluses, and canes, among other supplies.
If you can help in any way, please contact CAPVI at email@example.com or me at firstname.lastname@example.org or at
(510) 459-4396. Thanks for all your support.
Rocking the White Cane and His Skills: Little Boy Learning to Use His White Cane
by Joe Strechay on 3/22/2013 10:49:43 AM
You may have seen a recent video that has been popping up online, a little 4-year-old boy who is blind or visually impaired learning to use his cane. The little boy is learning to find the curb and step down.
The white cane is a tool used by people who are blind or visually impaired to help travel independently. People who are blind or visually impaired are taught to use a white cane; it doesn't just happen or grow out their hand like an X-Men character. (That might be cool if it did. Think, "Extend white cane, wham!" I threw in the sound effect for your entertainment.)
My twin brother messaged me about this video; he thought it was awesome. As my brother has a little boy about the same age, he loved this video because hadn't thought about little kids learning to use a cane. He said the video was amazing because you could see that the child was nervous, and hear his voice saying "I can do it!" And then you see him find the curb and his triumph when he manages the step down.
Most people don't realize the training and experiences that have to happen to get the child to that point.
Little kids who are blind or visually impaired need to learn to use a white cane, just as they are learning to walk around. The white cane allows them to explore their environment and travel safely and efficiently. Orientation and Mobility, as it is called, can be broken down into those specific aspects.
The orientation part is learning the skills to track and know where you are in the environment. This includes mental mapping, which is just that, mentally mapping out an environment in your mind. The fact is we all use mental mapping, but people who are blind or visually impaired depend on it a lot more. A professor of mine at Florida State University, Purvis Ponder, felt that orientation made up the majority of orientation and mobility. He would typically say over 90% was mental. And, he wasn’t calling me mental. A person who is blind or visually impaired utilizes all kinds of aspects of the environment, including the sound of parallel and perpendicular traffic. Yes, it helps to know what parallel and perpendicular mean outside of Geometry class.
It doesn't stop there, a person who is blind or visually impaired uses many of their senses to pick up on inclines, declines, consistent sounds, and even smells in their route of travel, this all could be set to remind a person that they are coming closer to a turn or a location. Yes, it is complicated, and not everyone has honed these skills. The skill level of an individual varies, just as you may not be as good at baseball as Derek Jeter (go, Yanks!).
The mobility part of orientation and mobility is learning to utilize the white cane to pick up on obstacles and barriers in your path. The white cane can be used to pick up changes in the texture of the ground. The white cane helps people find drop-offs, holes, and such: quite important.
This skill is taught by professionals trained at universities around the United States. These professionals are valuable and in shortage. We want little boys and girls such as the child in the video to be trained by professionals of the highest quality. Would you want your child taught to cross streets by someone without training? I don't think so. Most parents are scared to let their kids outside early on, think about teaching a child who is blind or visually impaired to cross a street. It is a necessity, as we want children with vision loss to grow up to be successful members of society. That includes traveling in their community independently.
There is also a science to how long a cane is, and a couple of different ways this is determined. You will notice the kid in the video has a cane proportioned to his height, as he wouldn't have a cane the same length as I have (56"). Typically, a white cane is up to a person's chin or forehead, depending on their speed of travel and technique.
Children with vision loss need to be learning the skills that will provide them with independence. You can learn more about orientation and mobility in the Expanded Core Curriculum area of FamilyConnect, and also by asking Marjie Wood, a certified orientation and mobility instructor, questions on the new Orientation and Mobility Forum.
Instructions for Beeping Easter Egg Hunt for Visually Impaired Children
by Scott Truax on 3/4/2013 4:30:23 PM
We're delighted to turn the blog over to guest blogger David Hyche, a NAPVI dad and ATF agent, for his tips on hosting a beeping Easter Egg event for children who are blind or visually impaired.
Holding a Beeping Easter Egg Event
To hold one of these events you will need a large flat grassy area with no holes, large rocks or fire ants. If you are from the northern US or a country that does not have fire ants, count your blessings.
I mark off an area appx. 50 meters square with stakes and crime scene tape as a safe boundary. Leave a space for easy entry and exit for the kids and helpers. I then have helpers turn on the eggs and place them on the grass around the area.
I use appx. 40 eggs at a time. As the kids find the eggs and pick them up the helpers turn them off and put them back in the child's basket so that the noise is only coming from the eggs that are still in play. VERY IMPORTANT that partially sighted kids and sighted siblings wear blindfolds or they will find all of the eggs. During the event we make sure that all kids find eggs by placing more on the ground if needed.
My sighted son also has been caught looking under his blindfold so watch out. I also advise that you limit or exclude sighted participants as much as possible because it is difficult to tell small kids not to find all of the eggs. We will have a separate area for a small traditional egg hunt for sighted siblings and this works better.
After the kids find all of the eggs I have them go to a table and we exchange the beeping eggs for candy eggs and start over again. I run about 8-10 kids at a time and keep it going as long as they like.
We also have other activities for the kids that make the event more special. We have had hay rides, fishing, horse back riding along with police and fire equipment and personnel for the kids to meet and learn about through touch.
Constructing the Beeping Easter Eggs
There are several methods for constructing the beeping Easter Eggs and my way is simple but durable and dependable. I purchase the components from Radio Shack. The items I have been using are:
- a small steel toggle switch (275-635) or a cheaper small toggle switch if available
- a 3-24v piezo beeper (273-066)
- a 9v battery and 9v connector (270-325)
- electrical tape
- large plastic Easter eggs
Many stores have these eggs for sale in packages of six or twelve and I usually buy them after Easter at Hobby Lobby for about 99 cents for 6.
1) I construct the eggs by drilling one hole in the long end of the egg just large enough for the threaded end of the toggle switch to fit snugly through.
2) I then drill several holes around the egg with an appx 1/8 inch bit to allow the sound to escape.
3) I solder one lead from the 9v clip to one connector on the toggle and solder one lead from the beeper to the other toggle connector. The solder is needed on the toggle connections to keep that connection secure through rough handling.
4) The second beeper wire can be attached directly to the remaining 9v battery lead. This creates a single switch series circuit that allows the battery to be replaced by simply removing the 9v clip and re-taping the new 9v in place. The wires can be twisted together and secured with electrical tape.
5) I secure the toggle switch to the hole drilled in the long end of the egg using the nut and washers supplied with the switch. Tight but not so tight the egg cracks.
6) The piezo beeper must be secured to the 9v with electrical tape. Make sure that you attach the battery to the beeper with the long ends of the beeper running the length of the battery so the egg will close securely. You might want to put a small piece of tape on the outside of the egg holding the two halves together.
Please contact me if you have questions or need assistance.
Work Number 205-583-5972
David.email@example.com or firstname.lastname@example.org
Would you like to write a guest blog post for FamilyConnect? We would love to hear from you. Send your ideas to email@example.com.
FamilyConnect Celebrates Read Across America Day!
by Scott Truax on 2/27/2013 5:00:50 PM
Reading is an important skill for lifelong learning and entertainment. Friday (March 1, 2013) is Read Across America Day, an annual event sponsored by the National Education Association (NEA). We are including several links for you to learn more about how you can be involved.
We'd love to hear what you're doing to celebrate reading. Let us know by commenting below, or on FamilyConnect's Facebook page.
Valentine's Day Resources for Families of Children who are Blind or Visually Impaired
by Scott Truax on 2/8/2013 4:46:14 PM
As Emily wrote last Mother's Day, "As a parent of a child with a visual impairment, art projects make me a little nervous. I want my child to participate in activities that are meaningful to him, and art can be a tricky subject if you have a teacher that is not perceptive to a child's particular needs."
She wrote about how great it was, then, to receive "two very tactile projects" from Eddie: a flower vase created by gluing tissue paper onto a jar, and a piece of clay he had molded, then decorated with glass rocks and silk flowers.
As Valentine's Day approaches, how do you support your child's impulse to create a handmade gift for grandma and grandpa, or in later years, keep up with the inevitable demands for cards for all of your child's classmates?
If you are working with an early intervention program or a TVI, ask your favorite teacher for suggestions! And don't forget to check FamilyConnect's Calendar of Events to find arts and craft programs near you.
Get creative: make your own puffy paint or (depending on your child's age) make some pudding and let your child use it as finger paint! Wikki Stix are another great way to create tactile graphics, or your child can create outlines with the Wikki Stix, and then trace around them to independently create a 2d drawing.
Make cupcakes or cookies together. Our article on Increasing Your Preschooler's Independence in the Kitchen offers some suggestions for including even very young children in kitchen projects.
WonderBaby offers Sensory Art Tips to help you "move beyond the visual" while exploring creativity with your children. Check out their list of Tactile Arts and Crafts for Blind Children for inspiration.
The National Braille Press also offers a number of great Valentine gift ideas, including jewelry, books, magnets, and print/braille Valentine's cards.
Seedlings is another good resource for print-braille-picture books, as well as fun braille gifts.
Wishing all of you and your families a very heartfelt Happy Valentine's Day!
Three New Hosted Message Boards on FamilyConnect
by Scott Truax on 2/4/2013 1:32:55 PM
We are delighted to announce the introduction of three new hosted message boards on FamilyConnect. The topics are the Parents of Infants and Toddlers board moderated by Kay Ferrell, Education moderated by Susan Spungin, and Orientation & Mobility moderated by Marjie Wood.
Today we have a blog written by Marjie about how she first become involved in O&M.
I love teaching Orientation and Mobility! It's a phenomenal profession because it impacts the person with a visual impairment in so many wonderful ways, from the baby who isn't yet moving to the adult with a recent vision loss.
Having the skills to interact with one's environment is so significant and vital to life! That's the beginning of what O&M offers. When people ask how I found this profession, I tell them that I had a friend in college who was in the program, which entailed taking a cane and blindfold to class each day to learn specific skills and concepts.
That was intriguing. Who knew there was such a profession? I only followed up on it as a result of my dad telling me that he was losing his vision. I figured that I'd take a course or two to help him. That's when I was formally introduced to Orientation and Mobility (O&M for short).
About a year ago I was telling people about 2 dime store turtles my brother and I had when we were young. When my parents bought them, they were about the size of a half dollar. I was 9 or 10 at the time. I had a desire to teach both of them how to climb out of their little plastic dish with the painted palm tree and crawl over to our swimming pool (we lived in Florida and pools are very common!) about 12 feet away. I don't remember how long it took, but I do remember how thrilling it was to see them swim in the BIG POND on their own!
I was so pleased that they became "independent travelers," outgrowing their container and eventually living in our pool. Once they each grew to about the size of a small dinner plate, we gave them the ultimate freedom of living in a nearby lake. So, my desire to help others gain control of one's environment through increase independence made becoming an O&M Specialist/Instructor/Teacher the only profession I'd ever do and want to do.
Through teaching O&M, I've gained another passion which is working or interacting with students' families, especially parents. I view the parents as the ultimate key to the child's growth and development and as the team leader. I am so grateful to have been asked to be a part of this extremely important endeavor that AFB and NAPVI offer to parents and families. I welcome any and all questions on FamilyConnect's new orientation and mobility message board, and look forward to time together to help your child gain a greater independence and interaction with the world in which we live.
Blind Teens Featured on Nick News with Linda Ellerbee
by Scott Truax on 1/29/2013 1:02:10 PM
Did you get a chance to watch Nickelodeon last night with the Nick News feature on several kids who are blind? I was very impressed with the opinions that the six children with a wide variety in background and interests shared with the audience. They expressed positive messages about their life and schooling, and all have great plans for their future.
Note: The Nick News "Out of Sight" Episode is now available online.
Xin Ju is a young girl from Wisconsin who runs around her house and playground with her sister. She reflected on what her answer is to kids who ask what darkness is to her.
Santiago is a teenager who lost his vision and now writes computer programs to assist with using his computer while also learning what color his clothes are with his iPhone.
Brittany is a teenager from California who can see a little bit and finds that at times it makes it harder for her to get help when she needs it.
The things they wrestled with are not that different from most teens—including getting along with their peers and doing their homework—but they did a great job of conveying how their visual impairment put a twist on doing things in their world.
I hope you watched it and if not, look for it to be repeated. The episode is also available for free on iTunes.
What I appreciated was their different views on being blind in a sighted world, but all with such a positive attitude about life. Did you see it, too? What did you think?
How Do You Celebrate Valentine’s Day With Your Children Who Are Blind or Visually Impaired?
by Scott Truax on 1/28/2013 4:14:38 PM
We are seeking your best tips on great ways to celebrate Valentine's Day with your children who are blind or visually impaired. Do you have a fun tactile craft project or activity you would like to share with others on FamilyConnect?
Here is a chance to win an adorable Yak stuffed animal, donated by the Rubin Museum of Art, or for those interested, four tickets to tour the USS Intrepid, donated by New York City's Intrepid Sea, Air and Space Museum.
Send your ideas to firstname.lastname@example.org with the subject line "Valentine's Day" by February 8th to be eligible for the drawing.
Please indicate if you are interested in the Intrepid Museum tickets with your submission; otherwise, you will be entered in the yak stuffed animal drawing.
We can't wait to hear your great ideas!
The Legal Stuff:
By entering, you warrant that your entry is original and does not infringe the intellectual-property rights of any third party, and you grant FamilyConnect a nonexclusive, worldwide, royalty-free license to edit, publish, promote, and republish your submission(s).
Touching Letters...Touching Lives
by Scott Truax on 1/8/2013 1:34:18 PM
In honor of National Braille Literacy Month, we asked guest blogger Michael Cavanaugh, a dad who lives in Seattle, Washington, to write about what braille has meant to him.
Getting the Diagnosis
Life was turned upside down for me in 1993 when I learned my newborn son was blind. The doctors originally thought he had congenital cataracts and recommended immediate surgery. On the day of surgery, after what seemed like an eternity, the surgeon said the operation revealed Norrie's Disease and there was no chance of restoring any sight. My capsized life started to sink.
My pediatrician assured me that she would contact someone who could alleviate my fears, and called the Washington Department of Services for the Blind (DSB). Within a few days, Scott Truax was at my door. He told my wife and I to hang onto our dreams. Our son could still grow up to be anything he wanted. He also invited us to DSB's Preschool Conference the following spring. The keynote speaker was someone not to be missed.
Learning a New Way to Communicate, and a New Career
The words that touched me so deeply during that conference were those about the importance of learning braille. Not only for my son—he had no choice—but also for me. It would allow me an additional way to communicate with my son. After all, when he grew up, I couldn't very well leave a printed note on the table telling him I was at the grocery store.
So, after eight years of adjusting life around a blind child, I went back to school, so to speak. The Washington Talking Book & Braille Library in downtown Seattle was offering classes in Literary Braille. After years of transcribing for the library to hone my transcribing skill, I submitted my 35-page braille manuscript to the Library of Congress to become an "official" Literary Braille Transcriptionist.
I have worked in the public school system as a transcriber and always prided myself on helping to make a level playing field for the visually impaired. The best part of a transcriber's job, for me at least, is getting to use my creative skills making tactile graphs or objects. Explaining something to a visually impaired person only goes so far. To create something that they can touch, feel and explore...it gives me great satisfaction, and them better understanding.
Currently I volunteer for the WTBBL library and would like to get back into the public school system or private sector to utilize more of my braille skills.
My son? He's attending community college studying to become a desktop support person. He's quite technically inclined and really wants to get into broadcasting. His knowledge of the radio market spans the entire country and astounds me.
Happy Birthday, Louis Braille!
by Scott Truax on 1/4/2013 2:20:20 PM
It was 204 years ago on this date that Louis Braille was born. His invention and refinement of the braille code opened the doors to education and literacy in general for individuals with vision loss.
After two centuries, braille continues to be at the core of necessary skills for independence. You can learn more about Louis Braille's life by browsing AFB's Louis Braille Museum.
And have fun learning more about his famous code through accessible games and activities on the Braille Bug® site.
FamilyConnect also has a wide variety of literacy resources for parents no matter what your chid's preferred reading method is.
An Unexpected Shot of Diversity on Children's TV
by Scott Truax on 12/12/2012 3:01:47 PM
A friend's young daughter occasionally watches the animated TV show "Horseland," which features a bunch of friends who ride at an equestrian school, work in the stables there, and enter competitions. Halfway through her first cup of coffee, my friend noticed that one of the characters was wearing sunglasses. "Is she blind?" the mom asked. "Yup," her daughter answered matter-of-factly.
In the episode, Mary goes horseback riding with all the other kids, answers questions about her visual impairment, asserts her independence when everyone keeps trying to help her too much, and sets one of the other characters straight when they get downright patronizing.
Wow! Casual inclusion of real live (OK...animated) children with visual impairments in a television show. Apparently the character was just a guest appearance—a cousin visiting one of the main characters—but still pretty cool.
Can you think of any other examples of children who are blind or visually impaired being represented in pop culture? It seems pretty rare. Joe Strechay wrote a great article about the Impact of the Popular Media on Public Perceptions of People with Disabilities for AccessWorld a couple months back, but rereading it, it struck me that most of the characters mentioned are adults.
Happy Holidays From FamilyConnect!
by Scott Truax on 12/6/2012 12:14:58 PM
It's the time of year again when we all face the task of finding the perfect gift for our children and loved ones. It can be especially difficult to find toys that will be a real winner with our children who are blind or visually impaired when so many toys require vision to enjoy them.
We have assembled some information that could help you in that search for toys that your child who is visually impaired will enjoy.
There is also information on how to plan activities to include your child in the family holiday events. Here is our FamilyConnect Holiday Guide to Toys, Games, and Gadgets for Children Who Are Blind or Visually Impaired.
For those who will be traveling this season we also have an article on considerations to make when traveling with your visually impaired child, written by Orientation and Mobility specialists. This article gives great information on car trips and visits to community resources such as museums.
Most of all this is a time of year to enjoy spending time with family and friends. I wish you a wonderful holiday season!
Ask the Experts: New Questions, and a New Approach
by Susan LaVenture on 11/6/2012 3:22:58 PM
Long-time readers of the FamilyConnect blogs may be wondering what happened to the "Ask the Experts" blog. It hasn't disappeared! We decided to merge Ask the Experts with the main FamilyConnect Blog, A Parent's Voice, to make it easier for users to navigate.
We will still be featuring periodic "ask the experts" events, and you can find all of the past Ask the Experts posts by clicking on the link in the righthand navigation area.
In the meantime, we're delighted to announce an opportunity to ask questions of the National Eye Health Education Program Low Vision Subcommittee, chaired by Mark Wilkinson, O.D. University of Iowa Carver College of Medicine, Department of Ophthalmology and Visual Sciences. The subcommittee has compiled a list of Common Questions Asked by Parents of Children Who Are Visually Impaired. In addition, we asked them to answer a few new questions raised by parents on our message boards, and by e-mail.
If you don't find your own question answered below, or in the FAQ, please leave a comment on this blog! And thank you very much to the doctors for joining us on FamilyConnect.
Ask the Doctors
Question: At what age can an eye care provider determine a child's visual acuity, and/or determine if he or she is legally blind?
Answer: It is important to understand that no one has normal (20/20) vision at birth. Vision is a learned process. A child with normal sight is only able to see in the 20/400-20/1200 range at 1 month of age, improving to 20/20-20/50 around 30 months of age. Typically, a child with normal vision will reach visual maturity around 5-6 years of age.
For a child with a condition causing vision loss at birth, such as optic nerve hypoplasia (ONH), visual maturation will not be reached until around 8-9 years of age, or even older. With this in mind, it is difficult to impossible to know how well a young child is going to see as they mature. This is why it is important to not overly worry about the visual acuity number you may be told for your young child. This number is simply a point of reference.
It is important for parents of a child who is visually impaired to understand that if your child has a stable visual condition that has affected his or her vision early in life, most likely his or her measured vision will improved vision as he or she matures.
In the case of ONH, there is a large range of visual acuity and it is difficult to impossible to know for sure how well a child is going to see at 4 months of age. As the child matures, a better understanding of his or her visual abilities can be determined. If your child has a known visual condition that causes reduced vision, the child should be enrolled in early intervention services to help her reach them meet their developmental milestones.
Additionally, the child should have some contact with both a teacher of the visually impaired and an orientation and mobility specialists who will work with your child's educational team to keep them on schedule for their developmental milestones. These professionals will also get the specialized vision services needed at the appropriate time.
Question: What is the status of stem cell treatment for conditions such as Stargardt disease?
Answer: Stem cell therapy holds much promise for many eye conditions caused by retinal photoreceptor (rods and cones) damage or degeneration. Interestingly, now, embryonic stem cells are no longer required for use in stem cell therapy. For the past couple of years, pluripotent stem cells have been made in the laboratory directly from an individuals own skin cells. From pluripotent stem cells, retinal photoreceptors can be grown. The next step in restoring vision with stem cells is occurring now by way of clinical trials where stem cells are implanted into blind or severely visually impaired eyes in an effort to restore vision. The next 5-10 years are going to be very exciting as more retinal degenerative conditions are treated with stem cell therapy.
Question: Is the gene therapy for Leber's Congenital Amaurosis (LCA) designed to stop the disease progression or to restore vision?
Answer: The gene therapy currently in clinical trial for the RPE 65 form of LCA is designed to improve/restore vision.
Question: Is it common for teenagers with achromatopsia to experience headaches, tingling in his head, and pressure?
Answer: Teenagers who are visually impaired may experience headaches and eyestrain with sustained reading or other near vision tasks. This is because younger individuals with vision loss will adopt a closer working distance to use relative distance magnification to see more clearly. This closer working distance results in greater accommodative effort, which can lead to eyestrain and headaches. This is not unique to achromatopsia. It is common for teens and young adults who are visually impaired.
Have a question for the National Eye Health Education Program Low Vision Subcommittee? Please post it as a comment below!
White Cane Day: "Baby, You’re a Firework, Let Your Colors Burst"
by Scott Truax on 10/15/2012 1:04:00 PM
The ability to travel independently is important to the ultimate success of people who have vision loss. The white cane is not only a tool but is also a symbol for independence. Today we celebrate International White Cane Safety Day with these reflections from Joe Strechay.
By Joe Strechay
It's that time of year again, and I think it is time to "let it shine," as Katy Perry sings in her hit song, "Firework," which strikes me as a good anthem for this year's White Cane Day. I am Joe Strechay and I am the American Foundation for the Blind's CareerConnect Program Manager. I am also a person who is blind or visually impaired, and I use a white cane as a tool to allow me to travel through my environment.
I was listening to the radio the other day and Katy Perry's "Firework" came on. I have heard the song so many times, but didn't think about it too much. My wife tells me the music video has a positive message about teens being brave and being true to themselves—celebrating self-confidence.
White Cane Day is all about creating awareness in the community about persons traveling using a white cane. It allows the public to be more aware about people who are blind or visually impaired, and the fact that the white cane means something. White Cane Day provides a forum to create awareness for all children and adults with vision loss. Creating awareness helps us give drivers a wakeup call—wake up and don't hit me with your car! As a parent, I am sure you experience bad and distracted drivers, which are even more dangerous for pedestrians who are not in a car.
It takes a level of comfort, self-confidence, and understanding for our kids to get out there with their white canes. A level of adjustment, too, as most persons with vision loss can attest to. Children battle the same issues.
Katy Perry sings, "As you shoot across the sky, you are a firework," which is right on. I think when a person is a competent traveler with a white cane, they shine like a "firework."
We don't always appreciate the services that we have access to in the United States, for the most part. Not all countries have the same access to these services from trained professionals (not that all areas are created equal). There are organizations out there such as Ability Beyond the Horizons, which is a non-profit that works to train professionals in developing nations to be orientation and mobility instructors. This organization is a small non-profit started by Mickey Damelio, the Orientation and Mobility Program Coordinator at Florida State University. Mickey and I discussed the need for such an organization while canoeing in Tallahassee, FL, a number of years ago. Mickey made this happen, and has spent the last two summers training orientation and mobility instructors in two locations in India.
In the United States, children in public schools can be provided with these services with appropriate documentation in their Individual Education Plan. Students are not always excited about having to take orientation and mobility lessons in school or in the community, but it is a must for students who need to learn these skills. These orientation and mobility skills are utilized throughout our lives to allow us to be a part of our community, work, and participate in recreational activities.
Our kids should be out there using buses, with proper training and coaching about being safe. It is important for us to trust our children to be out in the community. It takes a level of trust for parents to allow their children to get out there and experience life.
If your area does not have buses and other types of public transportation available, then I believe it is important to provide your children with the opportunity to experience these transportation options, whether it is on a school or organization-sponsored trip, or some kind of vacation. I have known families who took coach bus services to cities, stayed in hostels, and all for the purpose of allowing their child to experience different types of transportation. All families do not have the same financial capabilities, but there are creative ways to create these opportunities for our children.
Utilize the FamilyConnect Directory of Services and Calendar of Events and find out if there are any White Cane Day activities in your area that you and your family can participate in. Tell your child to be a "Firework" and "Let it shine!"
What We're Reading and Listening to This Week
by Susan LaVenture on 10/12/2012 3:25:55 PM
Now that the school year (and election season) is in full swing again, we're finding lots of great articles and resources online that might educate or inspire.
Although this article from the National Center for Learning Disabilities (NCLD), "Parent Determination Leads to Son's Success with Assistive Technology" focuses on a parent whose child has a learning disability, the core message about "the right combination of tools and resources and an earlier diagnosis" and the recommendation "to identify strategies and technologies that would compensate for his disability" really resonated. What has worked for your child? Have you found the right combination of tools and resources yet?
The NCLD article gives a nice shoutout to our partner Bookshare, and the free access it offers to ebooks. Given that the election season is upon us, why not check out these books, both fiction and nonfiction, that Bookshare recommended via its blog post, "There's an Election Coming!" The reading levels run the gamut from grades 1 to 9.
As the weather gets chillier and the leaves start changing colors, I admit my thoughts turn to apple pie. So I really enjoyed this webinar from Hadley with Christine Ha, the first ever visually impaired contestant, and winner, of the cooking competition show MasterChef. She offers terrific tips for adapting kitchen techniques to accommodate her vision loss, and talks about how...yes, apple pie was a turning point in her experience on MasterChef. If you've been trying to encourage your child's independence in the kitchen, check out this free webinar for some inspiration.
Finally, we're excited about the new webinar series from AFB based on the Learning to Listen/Listening to Learn book by Liz Barclay. The second one is coming up soon, and deals with Listening and Learning for Students with Additional Disabilities. The first webinar is now available in an archived version; it focused on Exploring the Link between Listening and Literacy Skill Development. Students who have visual impairments and additional disabilities need to be engaged in meaningful learning experiences that use touch and hearing to gain information, respond to other people, move within their environment, and occupy their leisure time. These webinars promise to provide a lot of great tips and strategies to parents and teachers alike.
Photos and Video From Space Camp: Day Three
by Scott Truax on 9/27/2012 12:32:55 PM
Sleeping in the bunks is getting easier every night, as everybody gets used to Hab One.
Exterior of Hab One
The second runthrough of the space shuttle simulator mission went much better and the students are hoping to have it totally down next time.
A camper reviews the large print manual during the space shuttle mission
The Aviation Challenge involves learning how to be a team and work on survival in the woods, including how to build a fire from scratch. Training includes search and rescue in the woods for downed pilots. The campers also learn escape and evasion techniques for downed pilots, marching in formation, protecting the aircraft, and learning how to be a team. They're in their camouflage at meals, sitting with their teams, and at the end of each meal they leap up and yell, "Sir, yes, sir, we're ready to rock!" Getting off the bus, everyone shouts, "Thank you for the ride, ma'am!" in unison, and then marches off together.
After all this activity, everybody thoroughly enjoyed a swim break, even in the cold, cold lake.
WAAY-TV visited camp yesterday and they got some great footage of the activities and talked to several of the campers about their experience so far.
Visit the SCI-VIS Space Camp website for more details about this great program.
Full Steam Ahead at Space Camp for Interested Visually Impaired Students (SCI-VIS)
by Scott Truax on 9/25/2012 5:54:44 PM
Wow, the action keeps coming here at SCI-VIS. We spend plenty of time in lectures on everything from space clothes to how you go to the bathroom in space, which of course is of prime interest to the kids!
Yesterday, campers built a battery-operated Lego® racecar as well as their own rockets from a kit. Lots of walking from one end of campus over and over. The campers who are participating in Aviation Challenge have to leap to attention and yell, like they're military recruits.
Today, the kids got to use a manned maneuvering unit (MMU). Air compressors push the MMU up so that campers are floating over the floor for a frictionless experience, as if out in space maneuvering. They learn how to push the levers for forward, back, sideways, etc.
A girl operates the levers of the manned maneuvering unit at Space Camp
For the classic camp experience, the
food's actually getting worse. Don't look at it, don't think about it, just shovel it in. At least there's always ice cream at lunch! Love those little dishes with the wooden spoons.
Meanwhile, the kids are doing their best to stay organized, find their clothes, and remember where they put everything! Who made this bunk anyway?
Our mission yesterday in the shuttle simulator went OK, but we hope the second will be even smoother. Everybody is making lots of friends and having a great time.
High Excitement Abounds at Space Camp
by Scott Truax on 9/24/2012 11:52:47 AM
Hi. I'm Scott Truax, and I have the privilege this week to be serving as a chaperone for kids attending SCIVIS (Space Camp for Interested Visually Impaired Students), a week-long camp that takes place at the US Space and Rocket Center in Huntsville, Alabama. The camp has been in operation for 23 years.
Everything here is marked in braille, and all materials and equipment used during missions are available in braille and large print.
Saturday was devoted to arriving at space camp, and moving into Habitat One. (NASA terminology: the bathrooms are called "waste management"!) Habitat One is built like a futuristic space station, with bunk beds, six people to a room. The kids have to move in, get oriented, and adjust to a very fast-paced life and agenda.
From 8:30 in the morning to 8:30 at night the days are fully scheduled. Kids range in age from fourth-graders to high school seniors. Little ones, big ones, constantly moving and doing all day. Please send good food, cafeteria food: yuck!
We got to go inside the mock space shuttle, based on the Endeavor, to prepare for our mission. Kids take on every role, from commander to mission specialist.
Exterior of mock version of the space shuttle Endeavor
FamilyConnect Celebrates National Hispanic Heritage Month
by Scott Truax on 9/15/2012 11:46:40 AM
In honor of National Hispanic Heritage Month (September 15-October 15), we wanted to highlight the many resources FamilyConnect offers for Spanish-speaking families.
In a hurry? Want to share FamilyConnect's information with a friend or family member who doesn't have easy access to the Internet? FamilyConnect has printable toolkits, available in both English and Spanish, that offer the crucial information families need to know after the diagnosis.
On FamilyConnect you will also find hundreds of articles in Spanish that will help you guide your child to the life he or she desires. Just use the "en español" link at the top of any page to explore.
Apurado? ¿Quiere compartir la información de FamilyConnect con un amigo o el miembro de la familia quién no tiene acceso fácil al Internet? FamilyConnect tiene herramientas imprimibles, disponible en inglés y español, que ofrecen la información crucial que familias tienen que saber después del diagnóstico.
En FamilyConnect encontrarás artículos que te ayudará a guiar a tu hijo hacia la vida que él o ella desea.
Obtén información por grupos de edad:
O busca información acerca de temas seleccionados:
New Funding for Centers for Parents of Students with Disabilities
by Scott Truax on 9/13/2012 10:04:59 AM
We would like to share the good news that the U.S. Department of Education has awarded funding for Centers for Parents of Students with Disabilities. These centers provide families with important information and referrals within their communities. This link takes you to the announcement and includes the list of programs that received the grants.
To check the list for a U.S. Department of Education-funded parent training and information center near you, visit www.parentcenternetwork.org.
Legally Blind Texas Teenager Excels in Track and Field Events
by Scott Truax on 9/6/2012 3:11:35 PM
In the spirit of the Paralympics, now being broadcast from London, we thought you might enjoy this terrific story about a 14-year-old Texan who participates in basketball and runs cross country, and even holds her high school's record in the pole vault. Charlotte Brown is legally blind, with 20/400 vision in her right eye, while the left senses only light and dark.
Hats off to her parents, as well, who despite some initial concerns have fully supported their daughter's athletic pursuits. "Her mom and I have never said 'can't' and we've never said 'why,'" said Brown's dad, "We've only asked 'How?'"
Thank you to the Dallas Morning News for this great article, and accompanying video.
An Action-Packed Summer, and Now Back to School
by Scott Truax on 9/4/2012 4:36:06 PM
We are back from an action-packed summer and have moved right into school. NAPVI's International Families Connecting With Families Conference was a tremendous success, with families coming together to learn and enjoy being together. The agenda was packed for both the adults and children, with Marla Runyan as a keynoter providing a thought-provoking and inspiring role model. Children were constantly in motion with sports, boating, and more.
We took this opportunity to interview families and David Hyche's interview is now available. Hear how he keeps his daughter active with a father's encouragement to engage and move, as well as using tactile stars and headless Barbies as motivational tools.
I hope you had a wonderful summer and are now moving right into the active school year. Let's keep our kids moving.
AccessWorld's Annual Back-to-School Issue
by Lee Huffman on 7/16/2012 10:14:47 AM
Hello, FamilyConnect community.
As the Editor-in-Chief of AFB's technology magazine, AccessWorld, I invite you to check out our July 2012 issue which focuses on providing information as students head back to school. It's almost here again. I know the students out there don't want to hear these words, but it's time to get back to school.
New classes, new instructors, class projects, oral presentations, tests, meeting new people, and even the possibility of changing schools or moving away to college bring about uncertainty and new challenges. Uncertainty is not necessarily a bad thing. This time of year can be exciting, too, especially if you plan ahead and prepare in advance.
Pursuing a good education can be difficult under the best of circumstances, and doing so as a person with vision loss can increase the challenge. Just as we have done for the past two years in the July issue, the AccessWorld team will once again focus on providing valuable information and resources for students, parents, teachers, and professionals in the vision loss field to help make educational pursuits less stressful and more enjoyable.
I have said it before, and I will say it again:
For the students in our readership: You must take personal responsibility for your education. Ultimately, you must be your own advocate. Prepare in advance, speak to instructors, and tell those you'll be working with exactly what types of accommodations will best meet your needs. Your education will have a tremendous impact on every aspect of the rest of your life, so it's crucial that you do everything you can to get the most out of your studies.
Good planning prevents poor performance. It's never too early to begin planning for the next school term, whether you're in elementary school or graduate school. Acquiring and learning to use the mainstream and access technology that best suits your situation, registering as early as possible for classes, obtaining reading lists, and searching out alternative formats should be done as soon as you can. Waiting until the last minute is a recipe for disaster.
The AccessWorld team is excited to bring the FamilyConnect community the information in our July issue, and we sincerely hope you or a student you know will find it useful. In this issue Darren Burton and Ricky Kirkendall of FloCo Apps, LLC bring you an article detailing AccessNote: AFB's New Note Taker for Your iOS Device, Larry Lewis continues his series Success with iOS with his article iOS and E-books, An Alternative Means of Reading, and Tara Annis highlights another STEM (Science, Technology, Engineering, and Math) initiative in her article, What You See Is What You Feel: Getting in Touch with Haptic Technology from eTouchSciences.
If you are looking for information about cell phone accessibility as you start the new school term, you will want to read Tara Annis's second article in this issue, An Evaluation of Two Cell Phone Accessibility Websites: Access Wireless and FCC Clearinghouse. Additionally, the staff at Baruch College highlights its method of linking technology and service to people with vision loss, and on the employment front, Dr. Jaclyn Packer and Morgan Blubaugh discuss research into the use of all-in-one multifunctional document centers by people who are blind or who have low vision.
If you happen to be looking for an accessible HD radio for your dorm room or new apartment or want access to digital television programming, Deborah Kendrick just may have viable solutions for you in her articles. To round out the issue, Janet Ingber looks at substitutes for the popular Siri feature on the iPhone 4S.
I encourage you to read every article, along with the articles from the July 2010 and July 2011 issues of AccessWorld, as the ideas and resources we've covered will certainly help improve, enrich, and broaden your educational experience. Please use these articles and resources to your best advantage. We on the AccessWorld team wish you good luck and good planning as you head back to school!
Raising the Money to Attend a Parenting Conference: Weighing the Options
by Susan LaVenture on 7/6/2012 3:38:22 PM
It was in 1989, shortly after my son Alex was diagnosed with retinoblastoma, a rare form of infant eye cancer, when I read this article about
ideas for getting a sponsorship to attend a National Conference of the National Association for Parents of Children with Visual Impairments, (NAPVI). The same day that we were told that our son had a blinding and life threatening condition, we were told by our insurance company that our son was not covered under our health insurance plan.
Needless to say, being a family of five, struggling to make ends meet, without any funds that could possibly cover the expenses to attend a NAPVI conference, we found a way through the inspiration of reading this article. We hope that you and your family will find a way to join us in Boston July 27-29, 2012!
(Reprinted with permission from AWARENESS, Spring 2012, adapted. For more details on how to become a NAPVI member and receive this quarterly publication for free, please visit the NAPVI website.)
Special Education Policy and IEPs Featured on the Radio
by Scott Truax on 7/3/2012 4:45:28 PM
With the sound of fireworks we all know that the Fourth of July celebration is here and we are deep in the midst of summer. This is not traditionally a time when our thoughts are on Individualized Education Plans (IEPs) but it is also not often that the subject of students with special needs and their IEPs make the news.
This week, WNYC radio in New York did a nice piece about parents working through the process to obtain the services their children need. Although it highlights events in one region, the dilemma that families face is universal across the United States. Follow this link to listen to this short, five-minute segment: "Special Education Overhaul Brings New Concerns About Students' Programs" and read the accompanying story.
You may find information about the IEP process written for parents on the FamilyConnect site in the Education section, including the topics:
Education policy will be in the news in upcoming months, as we gear up for the reauthorization of IDEA. Learn more about the proposed Anne Sullivan Macy Act, dedicated to helping children with visual impairments thrive in school. Named in honor of Helen Keller's extraordinary teacher, this legislation will require schools to:
Provide braille texts and teach braille to students who need it
- Offer accessible classroom technology
- Include orientation and mobility training as part of regular instruction
- Increase the number of special educators trained to teach visually impaired students
Sign the petition to help students succeed in the classroom, workplace, and their future lives.
While you are in the reading about education mode you might want to take advantage of another publication available through AFB entitled DOTS for Braille Literacy (Development of Teacher Support). The DOTS newsletter was first published in 1995 and has been available three times a year since then. You can access it online at www.afb.org/DOTS. If you would like to receive e-mail alerts when future issues are published, you may follow the instructions at the bottom of the first page. Although designed for educators, families will find good resources and interesting news in it.
Summer Is the Perfect Time to Think About Career Goals
by Joe Strechay on 6/22/2012 11:10:35 AM
What Did You Want to Be as a Kid?
I am Joe Strechay and I work at the American Foundation for the Blind in the AFB CareerConnect program. I write about career exploration, employment, and transition for the most part. On occasion I get the opportunity to write about current issues, entertainment, or technology.
I think back to the days when I was a child or even teenager. I wanted to work on the business side of professional sports — preferably the National Football League. I did come out of my undergraduate degree working in sports-related public relations and marketing. I enjoyed that, but I came to the conclusion that I was more interested in education. Truthfully, that was a debate for me during my undergraduate years. Our career goals change over time and through experience.
What is a realistic career goal? It is a goal that is achievable, and congruent with the educational path that an individual is taking. A career goal isn't always defined by a person's interest, but a person is more likely to be satisfied by a career that relates to an interest. "Relates" is a key word for this because not everyone can get that dream job to start. It is important to realize that within a field there are many different types of jobs. You can look at the AFB CareerConnect Career Cluster for law and you will see exactly what I am explaining.
When I hear someone wants to work in a specific field, I start to think about what it is that interests them. What skills and abilities do they have? What would they value about a job or a place of employment?
These are not simple questions. It takes years of career exploration and even trial and error through experiences to answer them. The road to becoming more self-aware can be a bumpy one; not all teens or persons are willing to open their eyes to reality. We are not all going to be famous actors, singers, or professional athletes — am I talking crazy here? I am not Simon Cowell, formerly of "American Idol." I am a guy who believes we all need to explore.
Career planning is a lifetime journey. I am still planning my career. I set a career goal for a few years down the line, and then I create objectives that will allow me to reach that goal. I was just telling my wife that towards the end of my graduate work, I set a goal that I wanted to work at AFB within CareerConnect. I set that goal seven years ago. I have been working within CareerConnect for a little over three years.
I still have career goals and objectives that I am attempting to achieve. How many of your children have mentors? I still have mentors, and they change as my career goals change. Mentors are great for helping you research and find out how you can reach a goal. I have mentors for different aspects of my life even. AFB CareerConnect can help connect your children or teens with mentors who are blind or visually impaired and working in their fields of interest.
Take the time as the summer begins to help your children explore careers through real life experiences. Introduce them to the jobs that are around them when you go to a store, office, hotel, mechanic, and more. Schedule some visits to local places that may host jobs related to their interests.
Get them thinking about all that it takes to be employed by encouraging them to use the Job Seeker's Toolkit on AFB CareerConnect. The Job Seeker's Tookit is a free, self-paced, online, employment process course aimed at teens and adults who are blind or visually impaired. The course covers self-awareness, career exploration tools and resources, pre-interview skills and tools, and the interview and followup.
One great thing about this course is that you can register as a user and then choose to generate a teacher code. Your child can enter this in their profile and associate you as the teacher. Being an associated teacher just means you can check your child's progress, and your child can send you copies of her assignments via e-mail with a check of a box. Check it out!
Some ideas for the summer months:
- Talk to your child about career goals
- Explore careers on AFB CareerConnect
- Point out jobs in the natural environment
- Schedule visits to different locations with jobs of interest
- Encourage the importance of mentors
- Get your child using the Job Seeker's Toolkit
What are your child's career goals? What objectives do you think will help him reach those goals?
Please Join Us in Boston, MA, at the Families Connecting with Families International Conference: Register Online Now to Save Money!
by Susan LaVenture on 5/31/2012 6:05:30 AM
Dear NAPVI Members and FamilyConnect Friends,
We hope that you are making plans to join us in Boston, Massachusetts, from July 27-
29, 2012, for the Families Connecting with Families International Conference.
The National Association for Parents of Children with Visual Impairments (NAPVI) along with parents, organizations and schools for the blind has been organizing a phenomenal conference program for you and your family. The conference welcomes parents of children with visual impairments, blindness, and additional disabilities of all ages, including siblings and extended family and friends.
Online registration for the conference is open now.. We have extended the early registration rate to June 8, 2012. Go to the conference page to see information about the conference program and
registration, as well as details about the special hotel rate.
Some highlights for the program include our keynote presenters; Marla Runyan, an Olympian Star who is visually impaired, Dr. Lois Smith, a renowned Boston Ophthalmologists and Paul Schroeder, Vice President of Public Policy of the American Foundation for the Blind.
The program also includes 32 workshops on a variety of topics of interest provided by parents and professional experts in the vision field. One of the most popular parts of the program is the "Eye Condition Networking Sessions" where parents will have the opportunity to meet other parents of children with similar eye conditions.
There will also be some pre-conference meetings on Friday during the day; NAPVI Affiliate Parent Leadership meeting, a special CVI seminar with Christine Roman, and focus groups opportunities for parents to give feedback to FamilyConnect on its social networking features, and to Bridge Multimedia for described and captioned media.
Through a special collaboration between Perkins School for the Blind, The College at Brockport-Camp Abilities, and The United States Association of Blind Athletes (USABA), your school-age children and teens have an opportunity to experience and participate in blind specific sports and leisure activities. Graduate and undergraduate students studying to be adapted physical educators will lend new cutting-edge teaching techniques and energy to the weekend.
Adapted physical education teachers and physical therapists will help facilitate various sports and games and provide vast knowledge, enthusiasm, and recourses. This is an excellent opportunity for children and teens to learn about sports, meet athletes, and interact with professional athletes with visual impairments.
We will provide a variety of developmentally appropriate sports and leisure activities
such as beep baseball, goalball, track and field events, rowing, horseback riding, and bocce. Physical therapist will run a gross motor and mobility room where children will play balance games and obstacle courses and more.
All games and activities will allow children of all ages and abilities to learn blind-specific sport skills, teamwork, and peer socialization. In addition, during the weekend events we are planning a teen social, including music, conversation, not to mention some great teen-approved snacks!
We hope that you decide to make the conference in Boston a part of your vacation plans this summer for you and your family!
Susan Laventure, Executive Director
There Is No Other Love Like a Mother's Love
by Susan LaVenture on 5/12/2012 7:58:04 PM
I feel confident in saying this with my experiences raising three children
and knowing and hearing so many families' stories for so many years; seeing and feeling the strength mothers have as they face their challenges while having the endurance to overcome the unexpected difficulties. No matter how tired they are they somehow go beyond to make sure their child(ren) are cared for to the utmost.
There is no other love like a mother's love for her child(dren). Mothers are nurturing, protective, and instinctive in caring for their children; it is universal.
Sessions Planned for the Families Connecting with Families Conference in Boston
by Susan LaVenture on 5/10/2012 4:49:54 PM
We're very excited about the agenda for the upcoming Families Connecting with Families Conference this summer. Here are just a few of the highlights:
- Internationally recognized expert Christine Roman will give an overview of what every parent should know about cortical vision impairment (CVI)
- Marla Runyan, the Olympic track star who is visually impaired, will give a keynote speech Friday night
- We'll have several exciting panel discussions, including ones for dads, teens, and siblings
- Varias sesiones serán ofrecidas en español (several sessions will be offered in Spanish)
- And a number of great sessions will focus on both mainstream and adaptive technologies, as well as social skills, tangible symbols, orientation and mobility, advocacy, and much more
Check out the conference program for more details, and make your travel plans today!
Update on the Great Activities for Children at the Families Connecting with Families Conference 2012
by Susan LaVenture on 4/26/2012 1:23:33 PM
We know that when parents are considering attending a conference for families of children with visual impairments, the very first consideration is: "How will I make sure that my kids are happy, occupied, and well cared for?"
We are very excited to report on the excellent childcare arrangements as well as sports and leisure activies planned for the upcoming 2012 Families Connecting with Families Conference in Boston, MA. Many thanks go to our wonderful Children's Programs Committee Chairs, Mike Pecorella and Lauren Lieberman.
Your infants will be thoroughly cuddled and cared for in two spacious suites. Infant and toddler games and activities will be offered throughout the day to keep your child at play with their individual "pace" in mind.
Through a special collaboration between Perkins School for the Blind, The College at Brockport—Camp Abilities, and The United States Association of Blind Athletes (USABA), your school-age children and teens have an opportunity to experience and participate in blind-specific sports and leisure activities such as:
- Beep Baseball
- Track and field events
- Horseback riding
- Balance games
- Obstacle courses
- And more!
Once we have received your Child Background Information Form, we will contact you to ensure that we have all the information we need to provide the best possible care for your child. In the coming months we will be providing you with additional details regarding our Children's Programs. We are looking forward to a great conference and lots of great fun and new experiences for your child.
See you in July!
Six Things You Don't Know About Parents of Children Who Are Blind or Visually Impaired
by Susan LaVenture on 3/12/2012 10:11:41 AM
This article really resonated with us: Six Things You Don't Know About a Special Needs Parent. What six things do you wish more people knew about parents of children who are blind or visually impaired?
My Child is Amazing Because...
by Susan LaVenture on 2/21/2012 10:10:34 AM
The National Association for Parents of Children with Visual Impairments (NAPVI) is a membership organization of parents from throughout the United States and around the world. The organization is lead by its National Board of Directors who are parents representing different geographic locations and our statewide and metro affiliate parent groups.
Please let me introduce to you one of our parent leaders, Pam Stern, the NAPVI Region 3 Representative for the states of Illinois, Indiana, Iowa, Michigan, Minnesota, Missouri and Wisconsin. Pam is a mother of a daughter who is blind, who has graduated college, and now has a successful career.
Pam is devoted to the mission of NAPVI to provide parent education, connection to much-needed resources, and emotional support when raising a child who is blind or visually impaired.
One of the ways Pam has communicated with parents living in her region is through her column that she sends out electronically. She often asks parents questions to provoke discussion and ideas amongst parents. Recently she posed the question to set a positive tone for the new year, by asking parents to complete the following phrase: "My child is amazing because...."
Our first response came from our new Region 5 Representative, Steve Walsh, a father of a blind son from Texas:
"My child, our son Will, is amazing because each and every day, he continues to show others how much they can see because he cannot. He approaches his blindness as a nuisance not a disability. He turns most all things into a unique ability. He has snow skied since he was 3 years old, drives jet skis on the lake, plays in the school band (marching band next year), has greater technological savvy than most people we know, and his courage is unsurpassed. He is truly his mother and I's hero day in and day out. He is always willing to help other kids with visual impairments and continuously enriches the lives of others who he comes in contact with. He attends a mainstream Junior High (always been mainstreamed educationally) at 14 years old and is an A/B student. A hero is someone with exceptional courage, fortitude, and will. That is our son and why he is so amazing. Thanks for allowing me to tell others why my son is so amazing! We, Will included, love being a resource for others. Our hope is to enable and inspire other parents and children who live with visual challenges."
Pam and all of us here from the FamilyConnect community would love to hear from you by completing this phrase, "My child is amazing because..."
Recognizing and Overcoming Test Bias Against Students Who Are Blind or Visually Impaired
by Scott Truax on 2/8/2012 11:10:30 AM
We are very pleased to welcome Shelley Homsy, a teacher of students who are visually impaired at the New York Institute for Special Education, as a guest blogger on the subject of test biases, and how to tackle them.
by Shelley Homsy, TVI
The New York Institute for Special Education
Students often ask, "Why do they make these questions so hard to understand?"
Bias against visually impaired and blind students in testing is a great concern to those involved with their education. These biases can cause extreme anxiety, distractibility, and in many cases, low test scores for our children. Translating visual images into braille is not reliable. We need to be confident that the tests provide a fair and accurate measure of our children's competency in a subject area.
Teachers of students who are blind or visually impaired (TVIs) are familiar with the individual needs of their students and are aware of the discrepancies in these high-stakes tests. Recognizing some of the most common biases is the first step in identifying possible solutions.
Something as basic as formats, for example, can cause a bias. Think of the staple placement in the top left corner of a large-print edition. Students need to look at charts, graphs, maps, and cartoons and refer back to them while reading the related questions. If using a CCTV, the student begins to find this juggling of pages cumbersome, awkward, frustrating, and time consuming. Confusion and distraction may result in the student not giving the question the undivided attention needed to respond correctly.
A simple solution for this staple-placement situation is to place staples of the large-print editions along the spine side of the test. It is easier to manipulate the test when it is in book-like form. Now the graphics and the accompanying question can be in close proximity to each other.
Confusion caused by drawings with dark shading, inadequate contrast, and words written on the background can all be described as "Too Much Noise": too much visual information and clutter. Graphs and charts of lines and columns and long lines of numbers can cause students eye fatigue. Students complain that looking at various patterns make their eyes "jump" when they glance at line patterns.
When your child is faced with too much information on a page, encourage him to be resourceful and creative. A possible strategy is for the student to make a "window" out of paper. Only the problem or question the student is working on should be exposed. Everything else on the page is covered. Small bits of information at a time may just be what it takes to filter out the "noise."
You can reinforce these activities at home, as well. It is important for your child to know that she can take control of her environment and that she can even make recommendations to her TVI as to what works or doesn't work for her.
Remind your child to ask the right questions. Self determination is an essential element in the Expanded Core Curriculum. Assure him that he could very well ask his teacher or proctor of the test to help fold or re-staple the book even if the teacher doesn't offer. Raise your child to always be prepared to ask for help, as most people don't really know that there is a problem.
Another example of your child soliciting help is when she hands in her work at the end of the test. Encourage your child to ask the teacher to please check over her paper to see that everything is filled in. This is especially necessary for the low vision student, as she may have skipped a question and not noticed it.
The Braille Authority of North America (BANA) has been working relentlessly to help with standardization. It publishes rules, codes, and formats for braille. It has just received approval and adoption of the long-anticipated Guidelines and Standards for Tactile Graphics.
Tactile Graphics are used by braille readers to obtain information that print readers get from visual pictures. They'll need to be taught and experienced at an early age. The interpretation and reading of a tactile graphic is a skill that must be taught to a braille reader. Remember, students who are blind or visually impaired gather information differently than sighted students.
Prepare your children not to be defenseless in the testing process. They need to understand how to address these discrepancies and advocate for themselves, instead of just accepting them as how things are supposed to be. They should inform their teacher when they believe they are at a disadvantage. It may not be obvious to the teacher or even the parent.
We do not expect different or "watered down" standards for the visually impaired student. Fairness is what our blind and visually impaired children are entitled to, so that they will have the same opportunity as their sighted peers to demonstrate their achievements.
MTV's Teen Mom 2 - The Diagnosis Continues
by Joe Strechay on 1/25/2012 1:35:54 PM
Almost a year ago, I wrote a FamilyConnect blog post about Leah, a participant on MTV's Teen Mom 2. Leah had twin daughters named Alianna and Aleeah, and was dealing with Alianna's diagnosis of nystagmus, a visual impairment that involves involuntary movement of the eye or eyes. The doctor prescribed very cute glasses for her. There was some concern that the child may have another condition affecting her legs and hips, and what may have been the cause of the nystagmus.
This season, Leah and Corey (Leah's husband) get more information about their child's prognosis. They visit a physical therapist, who discusses prescribing braces for Alianna's legs.
Leah and Corey prepare for meeting with a geneticist—this had been discussed since the last season. They are anxious to meet with the geneticist and to be one-step closer to an answer. After the meeting, they talk about a possible diagnosis from the geneticist, who suggested the possibility of a rare condition called campomelic dysplasia, a chromosomal disorder. The couple Googled the condition and are shocked by the suggestion that it could be fatal. During the appointment, the geneticist drew blood and said it would take four weeks to have the results.
During these episodes, you hear Leah and Corey discuss how they never thought about their child being born with any type of condition. The truth is, no one ever imagines his or her child having an impairment or disorder prior to birth. Often, children with visual impairments have other conditions as well, or a visual impairment could be a symptom of another issue.
Families deal with these types of diagnoses everyday. It is important that families have resources to go to for support and information. FamilyConnect is a website created by the American Foundation for the Blind (AFB) and the National Association of Parents with Children with Visual Impairments (NAPVI). FamilyConnect offers articles, blogs, message boards, Facebook-like features, and, most importantly, connections to the true experts—other parents who have gone through it and are still living it.
Later, Alianna stands with the support of holding on to objects—this brings Leah hope. This is prior to the use of leg braces. You can tell that this elates Leah and Corey. The episode concludes with them getting a call from the geneticist saying that everything is normal with her chromosomes. There is still a good possibility of a skeletal issue, which should have much less complications for their child's life. Now, they are extremely happy.
You can watch the episode, titled "Lean on Me," via MTV's website. What are your thoughts? Add a comment and I will try to get back to you as soon as possible.
Getting Ready for the Holidays and Spending Time with Your Family
by Susan LaVenture on 12/19/2011 10:34:02 PM
It seems it's a busy time for many families as we get ready for the holidays, whether it's decorating, shopping, or preparing food for special dinners and parties with family and friends. Searching and finding just the right gifts for your loved ones can be fun and can be challenging. If you celebrate the holidays by sharing gifts we'd love to hear your ideas of presents you've given to your child who is visually impaired that you think other parents would want to know about.
I like the holidays because the kids are out of school and many people take the time off for vacation. We have more free time to spend with the family to enjoy each others' company and to do fun activities together. Please share with the FamilyConnect community ideas for activities you've enjoyed with your family whether it be a favorite recipe to cook together, or making ornaments and homemade gifts. Also many families enjoy outdoor recreation for vacation. Families end up creating their own family traditions that we'd love to hear about—and especially how your child who is visually impaired is included in the fun time.
Since FamilyConnect has its new feature to post photographs on our new social networking site—please post your photos, too, of your family's holiday fun!
Wishing your family health, happiness, and peace in the new year!
Happy Holidays! Looking Back and Looking Ahead
by Scott Truax on 12/16/2011 2:50:12 PM
Happy holiday wishes to you and your family from FamilyConnect!
2011 was an exciting year for FamilyConnect—the site expanded in terms of both the number of families who have joined us and the new capabilities that have been added.
We are excited to have launched the social networking features that bring a whole new way to communicate and connect with families from across the country. Share links with friends, send a private message, post status updates, upload pictures for your profile, and as of this month, you may now share albums of pictures with your friends. This holiday season, share the magic moments you have with your child and comment on your friends' pictures and status updates, too.
We were very happy to welcome Emily Coleman to FamilyConnect. Her blog posts on "Raising a Child Who Is Blind And..." have been witty, heartwarming, and thought-provoking. And we're grateful to have had access to experts such as Dr. Kay Ferrell and the AccessWorld® Magazine staff through special events on the Ask The Experts blog.
We hope you have enjoyed using FamilyConnect. If you have not opted in to FamilyFriends we urge you to do so as you can easily find other families to connect with based on your child's eye condition, age, or your location.
We look forward to another wonderful year of connecting with and supporting each other, and hope to see all of you at the family conference in Boston next summer. Thank you for your participation, and best wishes for a happy holiday and new year.
I've Learned to Be Thankful Through Life's Surprises
by Susan LaVenture on 11/23/2011 9:11:32 AM
I've been thinking back on my time as a young mum, just starting out on life's path as a responsible grownup. I was looking to do all the right things in having a family and a plan for the future. My son's diagnosis with an infant eye cancer gave me one of my first lessons that life is full of surprises and no one really knows what will happen each day and into the future.
At this period of time I was in extreme grief and shock. I remember when his ophthalmologist was explaining to me the treatment regimen that would last intensively throughout his childhood; I was feeling that our family's lives had been turned upside down from any plans for the future that we may have expected.
As life has shown itself to my son Alex and his siblings, I would never have imagined what the future would hold. Alex has had an extraordinary life and lives life to the fullest. Through my son I have learned to appreciate life and its surprises—the ups and downs that we never expect, and all the different experiences and emotions that life holds.
Wishing you and your family the best throughout your lifetime, through the challenges and the joys!
Ask the AccessWorld Experts, November 14-18
by Lee Huffman on 11/1/2011 1:49:51 PM
As editor-in-chief of AccessWorld®, a free online magazine focusing on technology for people who are blind or visually impaired, I am pleased to spend some time with you on this blog to discuss the technology needs of your children who are blind or visually impaired.
From Monday, November 14 until Friday, November 18, we'll be answering the comments and questions that you post here. Simply scroll down to the bottom of this thread and click on the "Log in to post a comment" link to sign in and post your question. (You do need to be a member of FamilyConnect to post a comment. If you aren't, please take a moment to register. It is free, and will also give you access to a number of helpful features on the site.)
Feel free to ask any questions you have about mainstream or assistive technology—maybe you're curious about what cell phone to buy, or which ebook platform is the most accessible. Or you might be wondering what toys or gadgets your kids would enjoy for the holidays.
Simply leave your questions or concerns in the comments below, anytime from November 14-18 (Monday-Friday) and our team will be on hand to respond to your inquiries.
I'll be joined by a team of AccessWorld writers, including:
- Tara Annis
- Brad Hodges
- Janet Ingber
- Deborah Kendrick
- J.J. Meddaugh
- Ike Presley
- John Rempel
We hope you'll come back November 14-18 for this exciting online event!
In the meantime, I encourage you to take a look at AccessWorld's past issues focusing on "Back to School" topics—July 2011 and July 2010. The articles in these issues offer information about preparing students with vision loss for academic challenges from grade school to grad school.
Ed. note: Thank you for joining us for this special online event. Comments are now closed, but we hope you'll continue the conversation on FamilyConnect's Technology Forum. And sign up for AccessWorld Alerts to get an e-mail message every time a new free issue of AccessWorld is posted online.
I Never Travel Without "Slim"—Happy White Cane Day!
by Joe Strechay on 10/14/2011 9:28:57 PM
In honor of White Cane Day, I figured I would tell you why I truly appreciate my white cane.
I am Joe Strechay, and I work for the American Foundation for the Blind. I am visually impaired, legally blind, blind, or however you want to describe me. I have about 2 degrees of vision or so in each eye—or so I am told.
I wanted to take the time to tell you why I appreciate my white cane, which I have nicknamed "Slim." I chose Slim because he is a skinny fellow who travels with me all over the United States—he doesn't take up much room or even steal part of my seat on the plane. (Don't you hate that?) Well, "Slim" is a tool that I utilize to travel through the environment safely and efficiently. I would use jet pack for efficiency, but it lacks the safety part.
Through my job, I get the opportunity to travel and present to groups and conference attendees about employment and education—not a bad deal. However, I could not do this if I didn't have my friend Slim. I choose to use my trusty white cane over getting a guide dog for a few reasons—all personal reasons, nothing against guide dogs (I see myself getting a guide dog down the line possibly). My cane doesn't shed on my clothing, nor does it require food or water. My cane does require a new tip once in while, like once every 3 months or so.
I can remember traveling without a cane, which wasn't always pretty. I can remember hitting my shin on a fire hydrant—ouch! There were two particular events that caused me to start using my cane all of the time. I was walking along on a white sidewalk in Tallahassee, FL, and I stepped off a curb. Well, the curb happened to be a four-foot drop to a lower sidewalk. Luckily, I landed on my feet and caught myself with my hands, which left me with a little sting, some scrapes, but quite scared. I think it was a few days later that I was walking on a wooden boardwalk near the beach in Panama City when I went to step on the beach, but it turned to be a three-foot drop—this also scared me. At that moment, I decided it might be time to use my cane all of the time. I started using my cane all of the time and I have never looked back.
It is amazing how good a person looks when they are a great cane traveler. I am a great cane traveler, not perfect, but pretty sweet with my white cane. A person once told me that she didn't notice my cane because I traveled so confidently outside—I think it is the truth. People who travel efficiently and confidently don't seem to even be using a cane. Please go out and celebrate White Cane Day in your locality! Contact your local organizations through our directory to find out what is happening in your neck of the woods.
2011 National Bullying Prevention Month in October
by Susan LaVenture on 10/3/2011 9:35:17 AM
Bullying, and how to prevent it, is an issue that has confronted schools and families across the country. It is especially a concern for families of children with disabilities, including those who are blind or visually impaired, who may be perceived as vulnerable and therefore a target for bullying and teasing by their peers. "What Should You Do if Your Blind or Visually Impaired Child Is Bullied" (PDF) offers 10 guideposts for families and schools to address the issue.
To promote awareness of the issue, the PACER Center's National Bullying Prevention Center has designated October as National Bullying Prevention Month. The National Bullying Prevention Center, whose goal is to engage and educate communities nationwide to address bullying through creative, relevant, and interactive resources, has organized resources and events for this month. A listing of these resources and events may be found on its website in recognition of National Bullying Prevention Month.
In addition, the Described and Captioned Media Program (DCMP) has made available several resources, including tip sheets and videos, for families and teachers on its website at www.dcmp.org/bullying.
We are grateful for the organizations that have focused on the topic of bullying and worked on developing helpful resources for families. We'd like to invite families and children to share their experiences with bullying and their own tips and advice on how to face their unique challenges by replying to this blog.
Children From Vision Australia Communicate with the International Space Station
by Susan LaVenture on 9/27/2011 10:27:43 AM
This story from Vision Australia delighted me. Several young clients, 8-12 years old, prepared questions and had the chance to interview a real astronaut, Mike Fossum, about his life and work in space as he circled the earth at 27,000km per hour on board the International Space Station.
What an amazing, interactive science and technology lesson! The complete audio of the interview is available on Vision Australia's site, along with background information about all the hard work involved in making it happen. For example, the students only had nine minutes to ask their questions because they were communicating with the space station via relay, so they had to time it precisely to catch the station while it traveled from horizon to horizon.
As national coordinator Paul Paradigm said to the young "space cadets": "Don't let having a vision impairment stop you from aiming high. You're about to ask questions of an astronaut - keep aiming that high and keep asking questions and who knows where you might end up."
One of the Best Articles I Ever Read
by Ike Presley on 9/9/2011 1:21:12 PM
I just read the article, Dad, where's the plunger?" by Richard Holloway, in the Summer issue of Future Reflections and immediately wanted to give a copy to every teacher and parent of a child who is blind or visually impaired that I know.
As a child growing up with low vision I can remember similar experiences with my dad. Unfortunately they were not as in-depth as Richard's and Kendra's, but nevertheless they were essential to me learning about and understanding the world around me.
I cannot over-emphasize how important these types of experiences are for people who are blind or have low vision. These experiences are relevant at all ages. Last Sunday, I went to a huge international farmer's market here in Atlanta. There were dozens of items I had never seen or heard of before, and that was just in the produce section. Of course, I had to touch, smell, and visually examine almost all of these items. I cannot begin to describe the variety of textures, smells, colors, shapes, and sizes of the various produce.
Hopefully my 58-year-old memory cells will allow me to retain enough of this information so that I can use it in the future when I encounter similar items. Most likely I will encounter these items, or parts of these items, in different environments and be able to recall some of the sensory information I acquired at the market to help me identify them or at least categorize them as produce.
I could go on and on with numerous other examples, but I'd better get back to work. I'm sure you have examples from your own lives of hands-on learning experiences that have been especially meaningful for your children. I hope you'll share some of them here in the comments!
Ask Dr. Kay Your Questions!
by Kay Ferrell on 7/15/2011 5:10:59 PM
With the help of FamilyConnect and AFB Press, I am pleased to be able to spend some time with you on this blog, to talk with you about your families and your young children who are blind or visually impaired.
From Monday, July 18 until Friday, July 29 I'll be answering the comments and questions that you post here. Simply scroll down to the bottom of this thread and click on the "Comments" link to post your question or comment. You need to be a member of FamilyConnect to post a comment. If you aren't, please take a moment to register. It is free, and will also give you access to a number of helpful features on the site.
Feel free to ask any questions you have about understanding your child's development, preparing for school, or any other issue that concerns you. I'll also be answering questions about my new book, Reach Out and Teach: Helping Your Child Who is Visually Impaired Learn and Grow. AFB Press has arranged a special 10% discount for families who order through the online bookstore. Use coupon code FC2011.
I look forward to our conversation!
Dr. Kay Ferrell
Ed. note: Thank you to everyone who participated! Comments are now closed on this blog post, but we hope that you will continue the conversation on our Parents of Infants and Toddlers Forum, Parents of Preschoolers Forum, and Parents of Grade Schoolers Forum.
Born This Way: Inspiration From a Pop Star
by Susan LaVenture on 6/17/2011 1:58:15 PM
Joe Strechay, who has blogged for FamilyConnect in the past, writes movingly about what Lady Gaga's self-acceptance anthem, "Born This Way" means to him. Here's a brief excerpt of the song's lyrics:
Whether life's disabilities
Left you outcast, bullied, or teased
Rejoice and love yourself today
'cause baby you were born this way*
And here's a link to Joe's blog post on AFB: Inspiration from a Pop Star: Lady Gaga's "Born this Way".
I hope that all of our children can come to feel the same proud, joyful sense of self-acceptance!
*Paul Blair, Fernando Garibay, Stefani Germanotta, Jeppe Breum Laursen, Born This Way, Born This Way, BMI Repetoire.
Parents Speak Out: NJ Budget Proposal Would Slash Jobs of Teachers of the Blind
by Susan LaVenture on 4/6/2011 10:57:35 AM
I was disheartened to read a recent news story about the proposed budget cuts in New Jersey, which would slash jobs of teachers of students with visual impairments (often abbreviated as TVIs). The proposed budget cuts, if enacted, would lead to the loss of 20 teachers from the New Jersey Commission for the Blind and Visually Impaired, or almost a third of the already overburdened TVIs in that state. (Learn more about the critical role of TVIs.)
Parents spoke out at a recent hearing held by the NJ Assembly's budget committee. One mom asked, "Can you imagine having a school and cutting one-third of the teachers?"
It is so important that parents' voices join the public conversation to advocate for services to our children who are blind or visually impaired. In New York state, nearly 1,000 students, parents and advocates traveled to the state capitol to speak out, and succeeded in advocating for the restoration of funding for the 11 schools who serve the needs of blind, deaf, and severely physically handicapped children.
As Assemblyman Gary Schaer (D-Passaic) said, "Budgets are not simply numbers, but represent people behind them." It is critical that our lawmakers hear from those people, and know the effect of those numbers. And when the people affected are children, the parents who love them have to speak on their behalf.
Teen Mom 2: After a Diagnosis of Visual Impairment
by Joe Strechay on 2/28/2011 11:47:16 AM
Last week on MTV's reality television show, Teen Mom 2, Leah, a teen mother from West Virginia (not too far from the American Foundation for the Blind's Huntington office, where I am based) received some tough news about her child. The show started with Leah getting engaged to her boyfriend, who is the father of her twin babies. Leah has noticed some problems with one of her babies' eyes. Prior to this, the child had shown some other physical difficulties, which doctors are still trying to diagnose. Leah takes her daughter to an ophthalmologist to find out what is going on.
Leah has been confronted by her pastor about addressing her child's medical issues. Although at first she seems to be in denial about her child having medical problems, she does end up taking her daughter to the ophthalmologist. Also, in an earlier episode, an early intervention specialist visited Leah to teach her exercises and strategies for promoting movement in her daughter.
Leah's Visit to the Ophthalmologist
When Leah takes her child to the ophthalmologist, he diagnoses her daughter with nystagmus (involuntary eye movement). The doctor also notices that one eye has a propensity to drift. The doctor prescribes eyeglasses that could help correct this problem. Leah is also told that the eye and other physical issues could be brain related. These concerns could be linked to the child's premature birth. In upcoming episodes, Leah's daughter will have an MRI, which could help with a diagnosis.
The episode closes with Leah getting into her car and breaking down in tears. Leah has been hit with the reality that her child could have multiple brain-related impairments. This is a lot to handle for any parent, let alone a teen with a set of twins. Often, the diagnosis of a child with a visual impairment or disability is compared to the loss of a child—at least at first. Parents have to deal with the fact that their child's life may not turn out exactly as they pictured it. The adjustment process of coping with such a diagnosis is just that—a process. There are stages that parents have to go through when dealing with these types of issues.
I wanted to address Leah and any other parent dealing with such a diagnosis, to offer support, resources, and my thoughts.
On this week's episode, you were provided with a diagnosis of at least one visual impairment for one of your twins. I am also a twin and visually impaired, so I thought I could offer my perspective.
I am a professional who works for the American Foundation for the Blind (AFB). I work with teens, adults, and families through online resources and specific content. I also live in Huntington, WV, which is not that far from you.
Finding out that your child has a visual impairment can be tough—so tough that it is often compared to losing a child. But truthfully, with the appropriate resources and knowledge comes a different point of view. It takes time to really become aware of the resources available. We live in an exciting time when individuals with disabilities can excel and succeed in all facets of life. Children with disabilities grow up to be government officials, lawyers, mechanics, teachers, scientists, and more! You can learn more about the careers of people who are visually impaired on AFB CareerConnect, under the section Success Stories.
I believe that other parents who have experienced what you are now experiencing can offer the greatest support. AFB and the National Association for Parents of Children with Visual Impairments have a joint website called FamilyConnect. This unique website allows parents to connect with other parents through message boards with specific topics, such as their child's specific type of visual impairment and age. There's even a board just for those coping as you are with a new diagnosis. The message boards are monitored by experienced parents and professionals who are willing to offer their sound advice.
You can also create a profile and use FamilyFriends, a new social-networking tool that will allow you to start connecting with other parents of visually impaired children today.
Or you can do some research by reading through FamilyConnect and viewing articles, blogs, and multimedia. One great feature that might be helpful to you at this time is a video that features the Bushland Family. This video gives you a glimpse into how one family handled their child's diagnosis. All of these resources are provided at no cost and are available to you whenever you need some extra help, guidance, and support.
I am not just a professional who works in the field of vision loss, but also a person with a visual impairment and a twin. Just know that there are many resources out there and that you are not alone! If you are ever in the Huntington area or would like to visit our office to talk about resources and see some of the technology available, please let me know.
American Foundation for the Blind
FamilyConnect Launches Social Networking for Parents of Children with Visual Impairments
by Susan LaVenture on 2/17/2011 4:50:49 PM
We are delighted to announce to our FamilyConnect community that today we have launched a new social networking feature called Family Friends! (Thanks to all of you who voted and helped name this new feature.)
As of today you can create your own personal profile, upload a photo, share your news, and become friends with other parents like you that are registered on www.FamilyConnect.org. If you are already a registered user of FamilyConnect, here's how to get started:
And that's it! Then if you like, you can also add an "About Me" statement to help other parents learn a little bit more about you, and upload a profile picture. As more FamilyConnect users opt into the service, you will see friend suggestions in the upper right-hand area of the page. Your friend recommendations will be based on the state where you live, as well as your child's age and eye conditions. In addition, I asked to be on your recommended friend list, along with NAPVI representatives from around the country. We look forward to connecting with you!
Parents often feel a tremendous sense of isolation when our children are diagnosed with a visual impairment, and as we raise our children we face challenges from time to time. You can use this new vehicle for social networking to reach out to other parents for advice and support and to share your own ideas, solutions, and parenting tips, as well as your joy and pride in your children!
We hope that you will take advantage of this new tool designed by and for parents of children with visual impairments. Please help our national/international network grow by sharing this information with other parents of blind and visually impaired children you know.
Help Name FamilyConnect's New Social Networking Features
by Susan LaVenture on 2/8/2011 4:18:34 PM
We are excited to announce that we are soon going to be launching new social networking features on FamilyConnect.org! As the parent of a visually impaired child (now adult) and through my years of hosting NAPVI meetings, I know that it is an amazing experience when parents of children with visual impairments are able to reach out to each other, and share resources on raising their children from birth to adulthood.
We wanted to make that experience more readily available to parents. By the end of the month, FamilyConnect members will be able to opt into a new set of features that will allow you to:
- create and manage your own personal profile
- upload photos
- share your news and favorite links
- become friends with other parents!
Your friend recommendations will be based on where you live, as well as your child's age and eye conditions.
We owe a huge thank you to those of you who gave us feedback this past year during the development phase—through focus groups, online surveys, individual interviews, and usability testing. We know that the new features will be so much better because of your input, and we hope that you'll continue to provide comments and suggestions once the new tools go live.
Right now we need your help in naming these new features! Please submit your online vote by this Friday, February 11. Vote now.
Happy New Year!
by Susan LaVenture on 1/24/2011 4:12:43 PM
From time to time I invite guest bloggers who are also parents of children with visual impairments to express what their experiences have been. I hope that "A Parent's Voice" can be a forum where we can all interact with each other.
I am very pleased to introduce you to Maribel Montes, whose son has aniridia. Many of you may know her already from her posts on the FamilyConnect message boards as a parent coordinator. Thank you, Maribel, for being a vital part of the FamilyConnect team!
Dear friends and family of FamilyConnect.org,
My name is Maribel Montes and I reside in NYC with my family. Our son, John Alexander, is visually impaired and we have had the good fortune to have met so many wonderful families since our journey began as a family with a child who was born with aniridia.
Through active participation and volunteering for NAPVI (the National Association for Parents of Children with Visual Impairments), I am fortunate to be the current Parent Coordinator for www.FamilyConnect.org, NAPVI's and AFB's (American Foundation for the Blind) joint web site.
I wanted to take the time to send a special thank you and wish you a Very Happy New Year.
Thank you for a wonderful show of support in 2010! For becoming members and returning as existing members. For taking advantage of the wonderful resources and activities offered though FamilyConnect. For sharing your stories and helpful insight to other parents and/or guardians looking for comfort. Thank you for offering support and knowledge of your own experiences and for allowing us the opportunity to connect.
We look forward to writing with all of you in 2011. If you are on Facebook, be sure to follow FamilyConnect there and encourage your friends to like it, too. It's another great way to keep up with news from FamilyConnect.
We look forward as well to new opportunities in the coming year that will allow us to reach and enroll more members and continue to grow as a community with our families and supportive partners.
May the New Year bring good wishes to you all...
Having Fun During Free Time with Our Kids Who Are Visually Impaired
by Susan LaVenture on 12/16/2010 10:53:25 AM
At a recent NAPVI conference, we had a great discussion about ways to keep your child interested and engaged during longer periods of free time like weekends or vacation. I think we've all experienced that moment when everyone starts getting a little stir-crazy.
The parents attending the panel discussion had some great ideas about how to remind their children about all of the great options they have, and encourage them to make their own choices. After the conference, I asked two parents to write down their own perspectives on what has worked well for their families, so that we could share them with the FamilyConnect community.
What works best for you and your kids? We hope you'll add your voice to the conversation by adding comments on this post, or even by sending us your own "parent's perspective." You can submit pieces for publication on FamilyConnect by sending a Word document to email@example.com.
Teaching the Best Part of the Holidays
by Emily Coleman on 11/29/2010 9:36:08 PM
Yet again, the holidays are coming, which I know because the stores have been decked out for weeks. This is the time of year when I start my list-making and wondering what to buy my kids, including my son who is blind.
This year I find myself wondering, are my children considering what their family and friends would want for Christmas? Or, as I assume, are they more concerned about what Santa will put under the tree for them?
All children, but especially children with visual impairments, can find themselves in a world that revolves around them. As parents, we can change that by discussing what others may want for the holidays—or other gift-giving occasions like birthdays—by making a gift-giving list, and by taking them shopping with us.
First, we must identify what family and friends we'd like to shop for and what interests them. For those children old enough to write, have them create their own list while you help them brainstorm. This is an excellent time to practice braille or print depending on what method your child uses. For those who know how to use a slate and stylus, this is a great activity to master those skills.
The process of making a list will help your child truly contemplate the people in their life and what brings them joy. It can not only help them understand others better, but also will help them consider things they might have in common or topics of discussion the next time they meet.
Another step in the list-making process is determining a budget. For my son, who is five, this is more than he can take in, but older children can be taught a valuable lesson here. Uncle Ben might want to own a football team, and Aunt Liz may want a vacation home in Hawaii, but they will have to sort that out on their own. Maybe set a budget for your child so they understand their limits. Help your child realize the cost of things and even the value in a homemade gift. Crafts are always a great choice and a fun activity. Instead of shopping for gifts, you can take your child shopping for supplies at your local craft store.
Once a list is determined, why not map out a shopping day? This is a great chance to discuss local businesses and their location to each other. Find the best route and maybe even throw in some orientation and mobility instruction. Talk about different ways to get from Point A to Point B. If you have an older child seeking independence, take the bus. It might be a good opportunity for you both to explore public transportation. I do realize this may not be an option if you have a hefty list, but consider leaving the car home if you can, especially if you have a child that will not be able to drive due to their vision impairment.
Once out on the town, take time to explore the stores you enter. Many stores will provide a map at the service counter that will help you locate the items you need. You can also mention to your child that often employees are able to assist you with shopping needs.
When ready to find your gifts, let your children be as independent as possible. If they are old enough and able, let them try to locate the items, which will give them ownership in this gift-buying process. For younger kids, let them use their cane skills while you direct. Use directions to guide them, but allow them the freedom to explore the store as much as they'd like.
This won't be a fast process, so clear the day. I like to make this trip different from my normal in-and-out military operation. In fact, grab a coffee on your way and enjoy this time teaching your child how fun it is to shop for others.
When finished, for older children, let them do the purchasing. Give them the opportunity to pay and then calculate how much change they should receive. This can be a math lesson snuck into a fun outing.
When your child has marked off every name on their list, make sure to let them do the finishing work (with help if needed). This will be great practice for gift wrapping and they can even make a label for the gift using braille or print. The receiver will enjoy the braille as much as your child.
Another fun activity is labeling every present under your tree in braille and let your child hand out the gifts. If nothing else, it will certainly encourage their siblings to learn some braille.
After time has been taken to make a list, find the gifts, make the purchases, and wrap them for giving, your child will have a greater understanding of gift-giving. When the time comes to actually give their gift, they will truly benefit from bringing joy to another.
I spend so much time during the holidays wondering what to get my children, and they spend a lot of time wondering what they'll get. I don't want them to think that is what the holidays are all about and without some direct experience, they won't fully benefit from the best part of the holiday season.
If you have any suggestions for including your child in holiday shopping, please don't keep them to yourself! Share your ideas for shopping and even ideas for homemade gifts. Your insight may be just the inspiration another parent needs.
Thanksgiving for Our Children with Special Needs
by Susan LaVenture on 11/25/2010 12:32:11 PM
When a child with blindness or a disability is born into a family, or when a child becomes blind at some later point in life, parents initially feel grief and devastation. As life goes on, as families adjust to the news and try to figure out what this means to their lives and how this disability will impact their lives, it is difficult.
At some point, different for everyone, parents realize what a gift their child with a disability is! The experience opens up a whole new world for you and your family. Siblings become sensitive and aware of people who are different, parents meet some wonderfully devoted professionals that serve their children, you recognize that a person with a disability has a human spirit and can be very talented and engaged in a life that will make you proud!
All the best to you and your families this Thanksgiving weekend!
National Chinese Parents' Association Founded
by Susan LaVenture on 11/18/2010 9:51:57 AM
I am pleased to announce that through the support of the Perkins International Program, the very first national meeting for parents of children with visual impairments was held in Beijing, China, in August 2010. I was honored to be invited by Peng Xiaguang, of the Department of Special Education of the China National Institute for Educational Research, to make a presentation about how our parents' association in the United States developed.
In my presentation I shared examples of parents' associations around the world and the tremendous work that has been accomplished by these groups. Parent groups have been significant in developing schools and special programs for blind and deaf-blind children, advocating for national policy and legislation of special education law, creating recreational opportunities for blind children, supporting families of newly diagnosed infants and children, providing parent education and connection to medical and rehabilitative serves, and much, much more.
For the very first time parents of blind, visually impaired, and deaf-blind children from 25 of the 30 provinces in China, rural and urban regions, had the opportunity to meet each other and network. You can imagine the excitement in the room, or may have experienced the feeling yourself when attending a NAPVI national or affiliate conference.
At the Inaugural Meeting of China Committee for Parents of Visually Impaired Children the founding committee of parents was elected and the newly founded organization was established. By becoming a member of NAPVI you will have a new connection with parents of visually impaired children throughout China!
Chinese parents are anxious to network with us and to learn more. Some parents speak English and some do not. They are aware of www.FamilyConnect.org so I encourage you to try to reach out to them through the FamilyConnect message board forums.
During my presentation about the purpose and mission of NAPVI, I explained how we work to support and educate parents so they can ensure that their child can receive the special education and access to information and resources to prepare them for the future higher education and or employment.
When I made this comment I did not expect to hear a flood of responses and questions from the audience—the parents shouted, "you mean my child can have a future?" They were very curious about the various occupations and careers that individuals who are blind have in the United States as in China the only occupation expected for a blind person is to be a masseuse.
I explained that yes, in the United States people who are blind and other disabilities are employed in many types of professional careers although we still struggle in our country with the high unemployment rate of 70% of people who are blind. NAPVI has partnered with the National Industries for the Blind (NIB) to address this issue by organizing and hosting parent forums to discuss how to prepare their children for the future and employment options. This year we've held parent forums in Texas with the Texas Association for Parents of Children with Visual Impairments (TAPVI) and the NYC-NAPVI affiliate and ACB New York.
NIB and NAPVI are currently making plans for the next parents' forum that will be held in Seattle, Washington in March in conjunction with the Josephine Taylor Conference of the American Foundation for the Blind (AFB).
NAPVI's founding President Lee Robinson said, "Parents must regard themselves as the long lasting resource and the only consistent persons who continually have the child's interest at heart throughout their child's lifetime. NAPVI is a means to help them fulfill that function." Although there will be many special people that will touch your family's life, your role is the most important in your child's life. From nurturing your child from birth, to helping to see that your child receives the best education and access to information and resources, to ensuring your child learns the skills to prepare her for the future.
Excerpted from AWARENESS, NAPVI's award-winning quarterly newsletter.
Finding a Good Babysitter for Your Child Who is Blind or Visually Impaired
by Susan LaVenture on 11/3/2010 2:57:22 PM
An article in the New York Times yesterday addressed the issue of finding good childcare for children with special needs. As they wrote:
"Competent, reliable baby sitters are closely guarded treasures for most parents; for families who have children with special needs (but who do not qualify for state-supported respite care), such baby sitters may exist only in the realm of fantasy. Those who need a break the most, then, are often the least able to find someone they trust to provide it."
It's a lot of work raising children and requires a great amount of energy to do so—even more, at times, for parents raising children with visual impairments. It's important for you to remember to take time for yourselves, to have some rest, engage in your own special interests, or even romance, in your lives apart from your children.
Sometimes we are not inclined to trust someone else to take care of our child who is visually impaired, or we are afraid that other caregivers won't understand our child's special needs. Here are some FamilyConnect articles that may provide helpful tips to give to your sitters or daycare providers:
You may find other articles that are particularly relevant to whatever your child is currently working on, whether it's brushing his teeth, becoming more independent at meals, or using the bathroom on his own.
We would love to hear your advice on finding and training a sitter. What practical and fun tips have you given your babysitter that may be helpful to other parents?
Are You Aware?
by Joe Strechay on 10/29/2010 10:17:52 AM
As October draws to a close, I wanted to take a moment to commemorate this month's importance as National Disability Employment Awareness Month and to ask you, as parents, caregivers, teachers, and friends of children who are visually impaired, to get your youngsters thinking about and aware of career options as soon as possible.
In 1945, Congress designated the first week of October as National Employ the Physically Handicapped week, which was an effort to educate the public about hiring people with disabilities. In 1962, the word “physically” was dropped from the
title to include people with all disabilities. In 1988, Congress made the decision to expand the week to a month and renamed it “National Disability Employment Awareness Month.” This meant the entire month of October was dedicated to expanding awareness and employment opportunities for all people with disabilities.
Every parent wants his or her child to grow up and find fulfilling employment. It is important for parents and families to work as a team with their child's teachers and school administrators. This includes advocating, educating, motivating, and encouraging. Don't sit on the sidelines because this is the most important game you and your child will play in. It may be up to you to get your child thinking about employment and the skills necessary to be successful on the job. I believe children should learn and think about employment options from birth. We should talk with them about employment options and the skills that are necessary for careers, and we should explore the path that leads to that career.
I work in the AFB CareerConnect Program and my job is all about creating content that will help teens and adults who are blind or visually impaired explore and think about careers. I also get to work with parents, families, and professionals. I have worked in education from grades K-12, as well as in rehabilitation or habilitation with clients 18 to 80 years old.
I have met with teenagers from all over the country, and I keep hearing unrealistic career goals from high school students. While it would be nice to live in a world where anything is possible, it simply is not the case. All individuals need to have realistic career goals. Your educational path and skill set have to sync with what is required for a particular career. If not, this differential will lead to disaster.
AFB CareerConnect has a new, self-paced online employment training course called the "Job Seeker's Toolkit." This innovation allows users, who could be teens or young adults, to navigate through four modules aimed specifically at preparation for employment. There are short, easy-to-read lessons that connect to assignments with examples. The assignments are useful tools that can be saved in a user's AFB CareerConnect Portfolio. These tools can be printed out as well. The neat thing is that a parent or teacher can sign up and their account will be linked with their child or student. The parent or professional can generate a code and a student can add that to their profile. Then, when the student submits his or her assignment, the student can check off that they want the parent or professional to receive the assignment as
The Job Seeker's Toolkit could be an amazing resource for you and your child. It has advice and tips that guide users through the employment process from becoming more self aware to starting on the job. This is a FREE resource that is worth checking out. The course also has an associated message board that allows users to ask questions, share advice and tips,
Nothing beats real-world experience, so get your children prepared and out there, exploring all types of jobs and careers. Utilize AFB CareerConnect and the Job Seeker's Toolkit. Encourage your children or students to use their skills
and get some experience as early as possible. How many of you had part-time jobs while in high school? Don't you believe
that your children should have those same experiences?
Some resources to check out:
- The AFB
Press CareerConnect book combination.
- AFB CareerConnect, where users can send messages to mentors
who are employed in many fields. The safe message system will allow users to explore careers, interests, accommodations,
and more. AFB CareerConnect offers many other resources and teen-appropriate material. Check out "Aaron's Adventures in Employment" and experience some
entertaining educational multimedia materials.
- AccessWorld has a few articles specific to employment that would be great to check out. There are two in the October 2010 issue. But, you should also check out the July 2010 "Back to School" issue. AccessWorld always
offers great evaluations of today's technology with respect to persons who are blind and visually impaired. Check it out
Celebrating White Cane Safety Day: Raising Independent Children
by Mickey Damelio on 10/14/2010 12:10:05 PM
White Cane Safety Day was first observed in 1964 by President Lyndon B. Johnson, as a way to celebrate the independence and ability of people who are visually impaired. Independence and ability does not just happen, it has to be taught, fostered, and encouraged by the team of people surrounding your child, most especially his family, because unfortunately our school systems are taking an ever greater focus on the "core curriculum," math, English, etc., and how he'll perform on a standardized test this year, and even less interest in what your kid will be doing with his life when he's 28 years old and dating, job seeking, or buying a house. The core is important, but it is that "expanded core curriculum" that your child will draw on every day of his life.
Our job as parents is to best prepare our kids to be fully functioning, successful, contributing members of our society. Too often folks come to the table with lower expectations for the ability of their children.
So what can you do with your child? How can you raise them to deserve all the great qualities that people have come to believe when they see someone with a long white cane? It starts by seeing the child first, the visual impairment later; the person first, the cane later.
Children have the same wiring: they love games, they love to explore, they love to learn, and they love fun. When kids have disabilities, our society often robs them of many of these things that all kids REQUIRE to properly develop. People don't do this on purpose; they just don't think these kids are capable. They'll say they think they are, but their actions tell us differently. This is not deliberate, they're good people, and they want to do the best for your child, but society has been conditioning them that blind children can't, when they really need to believe they can.
It will be a struggle to change these perceptions, the best way to do it is to lead by example, and take it slow. Show people that your kid can. Kids with visual impairments can often engage in many of the same activities that their friends can, with just a little bit of creativity, or often a parent that is just willing to let them try. Take your kid out, let them play outside.
In a preschool setting the challenge is to teach the staff what your expectations are. You want your child treated just like the other children; you want her to be held to the same standard that any other child is held to. This includes the same time outs, as well as the same opportunities.
I can tell you from experience, the biggest objection I get with school staff is fear of liability. They are terrified that your child will scrape her knee and you will come to them with a lawyer and a court date. In reality, and I know this will sound strange; a scraped knee on a kid with a visual impairment is cause for celebration. Why? Because it means your little girl was out there pushing the limits.
So, you need to tell the school that it is ok if your kid gets a bruise; it is ok if he falls down. If it is ok for the other kids, it is ok for your kid, and not only is it ok, but it is your expectation that it be this way. Set the expectation, and just like kids, the adults will rise to it. We humans are suckers for expectation, we can't help it, we are wired to respond to them.
Now, I am not advocating just taking your kid and depositing them on a playground without showing them around, or heading into the school with your independence guns blazing, this won't win friends for you or your child. This is where the orientation and mobility specialist can help, or the teacher of students with visual impairments, but you can do it too, so don't wait around for someone else to be there if it looks like it will be awhile.
If it is going to be a while before the O&M specialist is on board, then get out there and show your kid around. Walk them through the different structures. Show the kids how to do sighted guide if it is needed with your child. Stop the hand holding stuff before it starts by the kids and the adults; proper sighted guide is all you want for your son or daughter. You can hold her hand, because you "get it," and you know when to stop it (when other kids aren't having their hands held anymore).
The reason for this is that unconsciously, I believe that hand holding with blind kids puts our minds in a place of care taking. It is a place of dependence, and it seems to nurture that belief in the person holding the blind child's hand, as well as those watching. So teach them sighted guide, he can grab onto someone's wrist if he's small, but he's still in control, if he's not comfortable he can let go, and he's not being drug anywhere, this shows belief in his ability, and subconsciously communicates to him that the person doing the guiding believes in him.
Most of these tips apply in the school setting as well, the major change in the school is that now you have a whole class full of mommies and daddies that want to mother and father your child, even though they are the same age. Again, this is the expectation that your child may unconsciously respond to, and we don't want this. Talk with the school staff, and tell them what you expect for your kid, remember the same expectations they have for the other kids, and you need to ask that they not allow the other kids to drag your kid all over the place and mother him.
If your kid was independent in preschool, he'll probably not allow kids to mother him in school, but it is amazing what kids will allow when they think they are getting a friend. Teach your child words to use like, "No thanks, I can do it myself." This falls right into the "use your words" philosophy most schools are adopting now. This is teaching your child to be a self-advocate, a useful skill for everyone to have, and a skill he will use the rest of his life.
Following these few tips, adjusting your expectations, encouraging independence, teaching others to believe in the success of your child, and asking yourself how you can make your son or daughter more independent in every situation, will, I promise, set your child on a road to the success, independence, dignity and freedom that the long white cane is meant to represent on White Cane Awareness day, and let's be frank, it is what everyone deserves, regardless of ability.
Would you like to read more on this topic? Can I help you with more ideas and tips? What suggestions do you have for parents reading this? Let's get a discussion started in the comments. We want this site to be what you need; you have a voice, let's hear it.
General Assembly of the United Nations Met in NYC Last Week
by Susan LaVenture on 9/29/2010 12:46:10 PM
Leaders from around the world met for the General Assembly of the United Nations (UN) in NYC to discuss and to make plans to solve the world's problems and issues. For you to know, the UN has established a document called the Millenium Development Goals (MDGs) which identifies the main issues and goals that impact humanity worldwide to be addressed:
Goal 1: Iradicate extreme poverty and hunger
Goal 2: Achieve universal primary education
Goal 3: Promote gender equality and empower women
Goal 4: Reduce Child Mortality
Goal 5: Improve maternal health
Goal 6: Combat HIV/MDG goalsAIDS, malaria & other diseases
Goal 7: Ensure environmental sustainability
Goal 8: Develop a global partnership for development
What does this mean to us—families of children with visual impairemnts and disabilities from around the world? What is our role in solving the world's problems? Actually, families and communities play a key role. Governments and large non-government organizations cannot achieve the UN Millennium Development Goals without us.
I attended a side meeting to the General Assembly "Five Years for Children; Partnering with Communities to Achieve MDGs with Equity" where international leaders discussed what we can do in the next five years to combat the world's main issues. I firmly believe that if parents of children with disabilities have emotional support and connection to resources and education, they can ensure and advocate that their children will receive special medical and educational services they need for their foundation for the future.
My role as the NYC Representative for the World Blind Union (WBU) and the National Association for Parents of Children with Visual Impairments (NAPVI), for the Non-Government Organizations (NGOs) to UNICEF is to be your voice and advocate to represent parents and children with visual impairments and disabilities. WBU and NAPVI are looking at ways we can contribute to supporting families worldwide.
NAPVI has been involved for 20 years in helping to support the development of parent and family support organizations throughout the world in nearly 20 countries, supporting members in 80 countries. We have a strong community base to make an impact.
You can expect more mobilization and communication through WBU, NAPVI and www.FamilyConnect.org with international communications through our websites to increase our networking and connections between parents' associations throughout the world.
Please check out this link of Stevie Wonder speaking out at the UN's 184th World International Intellectual Property Organization's meeting last week, advocating for copyright laws to consider allowance of translation of publications into readable formats for people with disabilities.
Being a part of the FamilyConnect community connects you with families throughout the world.
Useful Link: Organizing Your Concerns About School-Related Problems
by Susan LaVenture on 9/13/2010 3:46:20 PM
Pam Stern, NAPVI Regional Representative, passed along the following link from the National Center for Learning Disabilities website, and I thought that you might find it useful as well. It struck me as a nice practical resource for parents: Organizing Your Concerns About School-Related Problems Worksheet. (FYI, the worksheet itself is a PDF.)
How have you approached school-related problems in the past? What has worked best for you? FamilyConnect's message boards and blogs are a great space for parents to share their wisdom with each other.
What is the Expanded Core Curriculum?
by Susan LaVenture on 8/10/2010 3:19:35 PM
Are you familiar with the term "Expanded Core Curriculum" (ECC) or know what it means? It refers to the non-academic subject areas that students who are blind need to learn in order to become independent and successful:
- Social Interaction Skills
- Orientation and Mobility Skills
- Independent Living Skills
- Recreation and Leisure Skills
- Assistive Technology
- Sensory Efficiency
- Career Education
- Compensatory Skills
The special education law IDEA in the United States does not require all of these ECC subjects to be taught along with the traditional academic curriculum. Although academics are important, these skills are what make a person successful in life. Learning social skills will help your child interact in with his or her peers at school and in the neighborhood or in the workplace. And it is exciting and fun for families when children participate in sports and recreation, or learn how to cook their own meals and join in with doing household chores.
The concept of ECC was written and developed by Phil Hatlen, one of the greatest leaders in the blindness education field and since then the entire blindness field has agreed on how important these skills are for blind students to master in order to lead productive lives. So much so that the American Foundation for the Blind (AFB) and Perkins School for the Blind have launched a new website forum, www.ECCadvocacy.org and national advocacy effort to promote the inclusion of ECC into the next re-authorization of IDEA.
As parents you may or may not have heard of this concept, and you need to know so that you can advocate for educational resources for your child. As parents we can become a positive resource for the schools. It's important for you to know that your child can have an active and productive life.
Further information about ECC can be found here on FamilyConnect.org and the AFB and Perkins School for the Blind websites.
My Very First Paid Internship
by Scott Truax on 8/9/2010 4:45:08 PM
Hi! I hope you are all having a good summer. I am very pleased to introduce this month's expert, who will write about a subject that is important for families: summer jobs and internships. Daniel is sixteen years old, and interned in the AFB web department this summer.
With the summer winding down, maybe some of you (or your teenagers) have thoughts on how your child's summer job experience went. We would love to hear your stories, whether as comments below, or as blog entries of your own. If you have an experience to recount, please e-mail us at firstname.lastname@example.org or reply below!
FamilyConnect's "Transition to Independence" section for Teenagers has some great resources on summer programs, and heading to work. And if you live in an area where you're not likely to run into a professional who is visually impaired on the street, then explore the online resources of AFB CareerConnect®, where your child can explore career possibilities further, read success stories, and find a mentor who is visually impaired.
Also, be sure to check out Aaron's Adventures in Employment, a humorous series of video and audio dramas about a teenager dealing with putting together a resume, getting through the interview process, and learning how to succeed on the job.
My name is Daniel Gillen, and I am a sixteen-year-old rising high school junior. I have been totally blind since birth, and I have managed to advance into the workforce after completing one half of high school. I live in New York City, and I attend The Beacon School on Manhattan's Upper West Side.
Since the end of elementary school when I left an all-visually-impaired class, I have had a steadily growing interest in technology, math, science, and engineering. These interests spurred from my mastery of screen readers, braille note-takers, and other adaptive technology products which enable me to maintain above-average grades in all classes.
Back in grade school when I was wondering how a sighted teacher would set up my document pages on a computer in typing class, I was thinking of how I would ever be able to take total control over the computer without sighted intervention; that only came during the summer of 5th-grade graduation when I was shown basic JAWS commands, after which I taught myself the vast remainder. This ultimately led to my first paid internship; I am working in the AFB web department, so I make use of JAWS on my office computer for virtually all tasks. I put together spreadsheets with updates to the AFB Product Database, as well as some of the most visited pages on AFB's website.
My current internship working for the AFB is overseen by VISIONS, an organization with a similar mission which has been placing high school and college interns all over New York City. This past March, Lighthouse International, where I had gone to preschool and where I have been taking music lessons for ten years, held a job application fair. Unfortunately, I received the braille form after the application deadline.
However, in June, my father, while coming home from work, met Crista Earl, Director of Web Operations at AFB, on the street. He first described her to me as a woman with a guide dog. He and Crista had conversed for a long time about my interests in technology, and after finding out her title, my father asked me to e-mail her about possible interview times. The interview followed soon after my 10th-grade year ended, and the first orientation followed that. By July 7, I was physically oriented to my workplace, and I had begun my first work.
AFB was not new at this point in time to my family or myself. In 2008, my guidance counselor had informed me about a summer workshop in Provence, France with AFB and L'Occitane. The program was called Provence dans tous les Sens ("Provence in Every Sense"). Luckily, this was the last year of this once-in-a-lifetime experience. When applying, I was originally not selected. However, one person dropped out, so I was called for a runner-up interview four days prior to being accepted. My mother and I will never forget the experiences we had on the trip. Though farther from home than ever before, it provided a wealth of knowledge that inspired in part our current way of life.
Here is one final note on jobs and internships. This past year, I performed 50 hours of community service at the Jewish Guild for the Blind. This gave me the opportunity to do multiple tutoring activities, including preparing non-English-native-speaking adult students for GED testing, as well as helping them with ESL classes. I saw community service of any kind as a time to share with others the knowledge which I have been fortunate enough to gain. Whether a paid internship, community service, or volunteering, any job may be considered fulfilling if it is enjoyable by the employee. Jobs such as mine are meant just as much to fill spare time during the summer as they are to earn money.
Summertime: A Time to Connect with Families
by Susan LaVenture on 8/6/2010 3:17:22 PM
Hope you and your families are enjoying the summer and are able to keep cool as the country is experiencing unusually extreme hot temperatures. Summertime is always a busy time for the National Association for Parents of Children with Visual Impairments (NAPVI) State Affiliate and Regional family outings, conferences and parent meetings because the children are out of school and families get to enjoy a more relaxed schedule.
This summer NAPVI State Affiliates held family retreats, events, and conferences throughout the United States—including one of our longest established affiliates, Michigan Parents of the Visually Impaired, who held their annual family retreat. They are an amazing example of a strong statewide parents association led by their President, Gwen Botting.
NAPVI and the National Industries for the Blind (NIB) co-sponsored a "Disability Employment Forum" for parents of children with visual impairments and multiple disabilities at the Parents' pre-conference at the Texas Focus statewide conference coordinated by the Texas Association for Parents of Children with Visual Impairments (TAPVI) and the Texas School for the Blind's Outreach staff. The purpose of the forum was to bring blindness and disability employment leaders together with parents to learn and discuss issues about future employment options for their children and how to prepare them for future employment.
NYC-NAPVI Affiliate developed and organized an Eye Health Education Conference Program for Families of Children with Visual Impairments that was held on July 10, 2010, at the New York Institute for Special Education in Bronx, New York. The program for the parents included three keynote presentations and an open opportunity for discussion and Q&A with the audience. Invited speakers were experts in vision care from the medical and vision rehabilitations fields; ophthalmologists and optometrists gave presentations on pediatric eye conditions, the latest treatment methods and eye-health-related information such as low vision and nutrition; vision rehabilitation specialists who work with children with visual impairments from private agencies and schools in the New York City community also attended and exhibited.
National resources such as National Eye Health Education programs' materials were displayed. We provided a very creative and interesting children's program which included a yoga class taught by a visually impaired instructor to encourage physical activity for visually impaired children, and Art Beyond Sight of NYC coordinated an activity that the kids designed their own clothing from stencils of dresses and suits and decorated them with a variety of materials.
Next week, August 13-14, you are all invited to join us in Minneapolis for a regional family conference hosted by one of our newly formed parents' associations in Minnesota, MN-NAPVI, led by David Bushland, President and organized with Pam Stern, NAPVI Region 3 Representative. Families living in surrounding states are welcome. MN-NAPVI will also be holding a special sports day to encourage children who are visually impaired to be physically active and to enjoy sports activities in collaboration with the United States Blind Athletes (USABA). The regional conference program includes national and local experts and resources from the vision education, rehabilitation and medical fields. Please see the posting of this event and others in the Activities and Events section of www.FamilyConnect.org, and sign up to receive e-mail notifications whenever a new event is posted on the calendar!
Happy 20th Anniversary of the Americans with Disabilities Act!
by Paul Schroeder on 7/26/2010 10:17:43 AM
Today, the Americans with Disabilities Act (ADA) is officially 20 years old! I remember attending the ceremony at the White House where President George H.W. Bush signed the law on July 26, 1990 and I'm looking forward to celebrating with President Obama and the disability community today.
Of course, American children with vision loss have grown up in a society that, while not perfect, hopefully more effectively includes people with disabilities. ADA says no to discrimination against people with disabilities in employment, transportation, government services and access to goods and services. Hopefully, ADA says yes to enabling those of us with disabilities to pursue and develop our interests.
There is still a lot of work going on to extend ADA's prohibition against discrimination into other areas of life. For example, today, the Department of Justice (DOJ) announced that it is officially proposing to require that commercial web sites be made accessible for people with disabilities. In addition, DOJ also announced that it is exploring requiring movie theaters to include video description and captioning for movies.
Meanwhile, Congress is celebrating ADA in yet another way. Today, the United States House of Representatives is voting on a new law, H.R. 3101, the 21st Century Communications And Video Accessibility Act of 2010. This legislation, which still must pass the Senate and be signed by the President before it becomes law, would improve access to communications technologies that connect to the Internet and make television watching much more fun and informative for those of us with vision loss. Specifically, H.R. 3101 will:
- Restore and expand requirements for video description of television programs, in addition to requiring cable companies to make their program guides and selection menus accessible to people with vision loss.
- Mandate mobile phone companies to make web browsers, text messaging, and e-mail on smart phones fully accessible.
- Ensure people with vision loss have access to emergency broadcast information.
- Provide $10 million in funding each year for assistive technology for deaf-blind individuals.
At the time it was written, no one could have predicted the new technologies that would shape our daily lives and work routines. The ADA is best known for improving physical access to buildings, but now it is being used to improve our lives in many other ways, including in access to technology.
This is shaping up to be quite a 20th birthday. And, you can play a part in the celebrations and plans for the future.
You can watch the White House ADA celebration, which begins at 5:30 Eastern time, via the web at
Please log in and share in the celebration.
To learn more about the proposals from the Department of Justice, and to register your own comment in support of access to the web and to video description, use these links:
Comments are welcome from the public and are due by January 24, 2011.
You can learn more about H.R. 3101 on the web site of the Coalition of Organizations for Accessible Technology (COAT), www.coataccess.org. And sign up for alerts from FamilyConnect, so that you will learn about opportunities to help advocate for the bill. Your support will be especially needed to get it approved by the United States Senate!
Back to School Prep
by Lee Huffman on 7/8/2010 4:30:31 PM
As the long days of summer pass by, there are three words that strike fear, or at least some apprehension, in the hearts of students of all ages: "back to school." New classes, new instructors, class projects, oral presentations, tests, meeting new people, and even the possibility of changing schools or moving away to college bring about uncertainty, new challenges, and situations never before encountered. This is especially true if you are a student with vision loss.
In the July issue, the AccessWorld team has geared its work toward providing valuable information and resources for students, parents, teachers, and professionals in the field to help make educational pursuits a less stressful and more enjoyable experience for those who are blind or visually impaired.
There are two points I want to make clear to all who read the articles in this issue:
You as a student need to take personal responsibility for your education. Ultimately, you are responsible for advocating for yourself. It is your responsibility to prepare in advance, speak to instructors, and tell those you'll be working with exactly what types of accommodations will best meet your needs. It is your education, and it will greatly impact every aspect of the rest of your life, so you need to act responsibly and be proactive in your approach to pursuing your education.
- Good planning prevents poor performance. It is never too early to begin planning for the next school term, whether it is elementary school or graduate school. Acquiring and learning to use the assistive technology that best suits your situation, registering as early as possible for classes, obtaining reading lists for classes, and searching out alternative formats should be done as soon as possible. Waiting until the last minute is certain to be a recipe for disaster.
Pursuing a quality education can be difficult under the best of circumstances. Pursuing that education as a person with vision loss can be even more challenging. That is why having and maintaining a positive attitude is crucial to educational success.
The AccessWorld team is very excited to bring you this information, and the team and I sincerely hope you or a student you know will find it useful. I encourage you to read every article as the ideas and resources discussed in this "back to school" issue will certainly help to improve, enrich, and broaden your educational experience. A full spectrum of topics, ranging from knowing your legal rights to obtaining funding to purchase assistive technology, is covered. Please use these articles and resources to your best advantage. We on the AccessWorld team welcome your comments and questions, and we wish you luck and good planning as you head back to school!
Remember, this is the first issue in our new monthly publication schedule. Please look for us again in August!
Inventor of Top-Braille Wins a Prestigious Award, Makes Headlines Around the World
by Susan LaVenture on 5/11/2010 5:20:22 PM
Each year, for 109 years, the Lépine Contest in France selects a famous invention. This year the Top-Braille handheld device for instant playback of any printed text in braille or speech has won the prize—selected from more than 500 inventions!
It is so cool to see how far technology has come in making communication accessible for individuals who are blind or visually impaired. It's great to see that this device is being recognized and I hope that it will bring awareness to the public about the importance of technology's role in keeping communications accessible for blind and visually impaired people. Especially as the world moves forward in technical advancements with new ways of communicating—whether it be the Internet, computers, phones, television, film—we need to make sure these new social networking features and functions are made accessible for people who are blind or visually impaired.
The inventor, Raoul Parienti, is a former math teacher and engineer. His sister was the inspiration for the invention as she was visually impaired and brought to his attention that very few documents are written in braille. The device currently reads seven languages: French, English, Spanish, Italian, German, Portuguese, and Dutch.
I thought it was an interesting fact since Louise Braille, the inventor of the braille code, was from France, too—born 201 years ago!
Celebrate Children's Book Week with Braille, Tactile, and Large-Print Books
by Susan LaVenture on 5/10/2010 11:26:42 AM
I hope you all had a wonderful Mother's Day weekend, and maybe even scored some precious rest. This week, I wanted to alert you to another special occasion: Children's Book Week!
Since 1919, Children's Book Week has been celebrated nationally in schools, libraries, bookstores, and homes around the country—any place where there are children and books. How will you and your family celebrate?
Check the FamilyConnect calendar for events and programs near you, and explore the resources that partners like Bookshare, the Braille Institute of America, National Braille Press, Recording for the Blind & Dyslexic, and the American Printing House for the Blind have to offer.
And share your suggestions with other parents right here; what have been some of your child's favorite books? What is your favorite resource for braille, large-print, or audio books? Have you ever created tactile books with your child? Explore FamilyConnect's articles about Promoting Your Child's Development of Reading and Writing Skills and Reading and Making Tactile Books with Your Child. Let's share our good ideas!
The Greatest Love: Celebrating Mother's Day
by Susan LaVenture on 5/7/2010 10:46:47 AM
Last Saturday, the annual spring preschool conference, New England Regional Seminar for Families of Children with Visual Impairments, was held at Perkins School for the Blind in Massachusetts.
Each year, parents with their infants and toddlers who are visually impaired, their brothers, sisters, and grandparents from the Northeastern states gather together. It is an amazing experience and meets a deep need for these families because often this is their first time to meet other families and to learn about all the resources and information available to them.
NAPVI has been a part of the planning team for the conference throughout its 27 years—so as NAPVI National Representative I had the opportunity to welcome and address the parents to let them know that this conference was very close to my heart.
When my son Alex was diagnosed at 10 months old with retinoblastoma, a rare form of infant cancer, I was devastated and searching for support and information and found out about the Perkins School for the Blind outreach services and the annual preschool conference. When I attended the first time, I knew I was no longer isolated in my experience. I met so many families with similar needs, and I found a wealth of information that I needed to know to cope and raise my son.
My message to the parents: I feel the greatest love is that between parents and their child, although some people would disagree so I'll say, one of the greatest, most powerful loves is that between parents and their children—to nurture and protect their child. Even more so when a child is born blind or with a disability—you as parents become born advocates, with no choice. I've met many mother tigresses!
You as parents are the most important significant people in your child's life. There will be many professionals—medical and special educators who will work with your child, many wonderful human beings that will open up a whole new life for you and your family—but your role is the most significant because you know your child best, you are the constant throughout your child's lifetime.
My son is now 23 years old and graduated from Cornell University in 2009 magna cum laude. He currently has a job doing medical research at the neuro-scientific lab at Brigham and Woman's, a Harvard-affiliated hospital, working on various disorders and injuries of the brain. My son wants to give back and make an impact in life. Ultimately his life was saved; he had one eye removed and has useful vision in his remaining eye.
Did I know what the future would hold when I was a young mom and my son was a baby fighting for his life and his sight? No, noone knows what the future will hold—we don't even know what will happen for the rest of today or tomorrow. What I want to express to you is never lose hope: no matter what your child's situation is, as parents we keep loving, protecting, and advocating for our children and having expectations.
Being a mother is enduring and you need to make sure that you try to take care of yourself. And I know that is difficult to do because most mothers have an instinct to always take care of everyone else, BUT you really do need to take care of your own physical and mental health. Now I'm acting like a mother to you—make sure you incorporate exercise and eating healthily into your lifestyle, and keep your own interests that can be stimulating for you and can be a stress reliever. These suggestions I've learned from raising three children who are now independent young adults, with some grandchildren on the way!
Enjoy the upcoming Mother's Day weekend with your family and I look forward to hearing from you on www.FamilyConnect.org. This forum is for you.
Join FamilyConnect in Celebrating May as Healthy Vision Month!
by Susan LaVenture on 5/5/2010 11:23:22 AM
The National Eye Health Education Program (NEHEP) of the National Eye Institute (NEI) has created free resources and tools in English and in Spanish that you can download or link to, to share with other parents and your community. Their site is loaded with information about resources, tool kits, literature, and information on eye diseases, fact sheets, ideas for community activities, and games for kids all to promote eye health education. This is great awareness for your child with a visual impairment, their brothers and sisters, for yourselves as parents, and grandparents. Hey, just thought you should know—the best part is that it is really good resources for free—especially in the tight economy today.
Developing Next Year's Individualized Educational Program (IEP)
by Scott Truax on 4/22/2010 11:59:32 AM
Spring is a time for both renewal and obligations—with flowers blooming, taxes due, and for many families, the development of next year's Individualized Educational Program (also referred to as an Individualized Education Plan, or IEP) for their child.
The IEP meetings can be a time of rising anxiety and many questions. It may be that you have developed a good working relationship with your service providers and attend the meeting with confidence. For some it becomes like a family reunion where you catch up on recent events with the people who have been working with your child through many years and transitions.
However, there are frequently questions and concerns that involve the scope and timing of services. Is my child receiving instruction in all the areas he needs and is sufficient time allotted? Do I need to push for more instructional time? Are all the necessary skills being addressed? In short, how do I know if this is really a good deal?
FamilyConnect provides you with many resources where you can research a wide variety of topics including information about IEPs and skills in general. There are a variety of articles that you can read developed both by age and topic. Listen to parents and their children talk about their experiences, in a new series of interviews.
Are you still in doubt? Reach out to the thousands of families who are registered users of FamilyConnect by using one of the many message boards available to you. Get your advice from the experts who have paved the way before you or are living it now. You may want to see if there is a NAPVI chapter in your state or region. You can do so by browsing the directory of services or calling them directly at 800-562-6265. No NAPVI chapter? Then start one today. NAPVI will help you through the process.
I would love to hear from you on this topic. How do you view the annual IEP? Do you have anything you would like to share on this blog? It can all start right here.
Inspiring Your Child to Become Involved in Sports and Physical Activities
by Lauren Liebermann on 3/15/2010 11:12:13 AM
I have a passion for bringing the world of sports and physical activity into the world of individuals with vision loss. Much of my professional life has been devoted to supporting the inclusion of students with visual impairments and blindness in physical activity and sport. I founded Camp Abilities, a developmental sports camp for children who are visually impaired, blind, or deafblind, in 1996. There are now eight Camp Abilities programs across the nation and in three other countries. Camp Abilities empowers children with visual impairments to become involved in physical activity and sport and teaches future teachers how to teach children with visual impairments.
It is important that children be given these experiences for all the benefits they provide to improve both their physical well being and the self confidence that results from these skills. You may explore the FamilyConnect directory of agencies to locate programs and the FamilyConnect calendar of events will help you to find activities. This article provides a deeper look into the subject of getting children with visual impairments involved in physical activities. For more detailed information, including audio interviews and book recommendations, visit Lauren Lieberman's advice on recreation and leisure skills.
It should be noted that many teachers do not learn how to teach children with visual impairments. Physical education teachers often do not receive very much or any instruction on how to teach children with visual impairments in their professional preparation courses. But research has shown that the best way to learn how to teach children with visual impairments is to teach them.
Children with visual impairments will learn best in any setting with a 1:1 ratio for instruction and feedback purposes. This 1:1 can come in the form of a peer tutor or a teacher assistant/paraeducator.
If your child has a visual impairment severe enough to impede their ability to see a demonstration, it will take longer to learn the basic elements of a skill or sport than their peers. For example: a child who is learning to play volleyball may take 30 minutes to an hour to feel the court, understand positions, learn the different skills used, comprehend the serve, the scoring, and rotation of players. By the time the child who is visually impaired learns the basic concepts, his/her peers will already be learning the bump, serve, and set skills.
By adding an additional class and some one-on-one instruction, the child with a visual impairment will have a clear idea what volleyball is and the variables that are involved in a game so they can keep up with the pace of the instructions and so the class does not have to slow down for them. These classes could be before school, for 15 minutes before each class, or other open spots in the child's schedule. It would be best to schedule these at the beginning of the year.
When your child knows how to play the same sports and recreational activities as their peers, they have more in common with them and can have conversations and keep up with social discussions. If they do not know basic sports and recreational activities, they are often left out of everyday conversations.
There are many sports opportunities for children with visual impairments. Children with visual impairments have the right and often the ability to play after-school sports and have been successful in swimming, track and field, soccer, wrestling, football, basketball, and gymnastics. In addition to after-school sports, they can participate in any community sports programs.
Nationally and internationally, children with visual impairments can compete against their peers who are visually impaired through the Unites States Association for Blind Athletes (USABA). The USABA sports consist of swimming, track and field, 5-a-side football (soccer), goal ball, Showdown (a sport similar to air hockey but with a ball with bells and no air), Judo, tandem cycling, wrestling, power lifting, skiing, and ten pin bowling.
In order to get involved in USABA, the athletes must try many of these sports and determine which one(s) they like the most. Then they must find a place to practice and gain skills, either with other individuals with visual impairments or with their sighted peers. A great book to help them gain this information is Going PLACES: A Transition Guide to Community Recreation and Sports for Adolescents who are Visually Impaired, Blind or Deafblind (2006) Lieberman, Modell, Ponchillia, and Jackson through the American Printing House for the Blind.
The following are a few web sites that may be helpful to instructors, parents, and vision teachers who are helping children with visual impairments to become physically active:
- Project INSPIRE provides information about adapted physical education, adapted aquatics, and sports for children of all disabilities.
- Camp Abilities—Check out the video "Teaching Children with VI, Blindness, or Deafblindness in Physical Education" which includes information on assessments, instructional strategies, guide running techniques, and more.
- United States Association for Blind Athletes has videos of guide running techniques and Judo, and includes information about Sports Education Camps.
- Blind Judo Foundation has information for parents and instructors about the benefits of Judo and instructional strategies.
- Texas School for the Blind offers ideas on how to teach children who are visually impaired or have multiple disabilities in physical education.
- The American Printing House for the Blind Parent/Teacher Resource for Children with Sensory Impairments offers an entire resource list, including everything from equipment companies, organizations, research, books, and products. If you click on products you will see a list of APH products that will help promote sports and physical activity. Many of these products are on quota funds.
Brian McKeever to Make Olympic History
by Susan LaVenture on 2/18/2010 1:51:20 PM
I was excited to see that a Canadian cross-country skiier named Brian McKeever qualified to compete in this year's Winter Olympics. McKeever, who has Stargardt's Disease and is legally blind, will be the first athlete to compete in a Winter Olympics after competing first at the Paralympics. His 50-kilometer cross-country ski event will take place on February 28. McKeever will also be competing in this year's Paralympics in Vancouver, March 12-21.
This ESPN article provides an interesting history of other athletes with disabilities who have competed and even earned gold medals in the Olympics—really an inspiring read for those of us who have struggled at times to get accommodations for our children to compete in sports. There is also a nice interview with McKeever available on YouTube, in which he talks about the progression of his disease, and how he reacted initially. Brian, good luck in your race! We will all be cheering you on.
Parents, I'd love to hear about your children's experiences with sports. Have you checked out organizations like USABA, the Blind Judo Foundation, or Ski for Light? I recently learned that one of AFB's employees, Tara Annis, is just back from a week-long ski trip. We asked Tara to tell us a little bit about how she got involved in skiing. I am happy to introduce her as our guest-blogger this week!
by Tara Annis
I love any type of sports or recreation activity, and am interested in learning about other visually impaired persons participating in sports.
I have to honestly say that cross-country skiing is one of my favorite activities, mainly because it is an endurance sport and allows me to be outdoors.
2009 was my first year at Ski for Light, and I loved it so much, I decided to return this year. It was in Provo, Utah, at Soldier Hollow ski resort, one of the sites of the winter Olympics in 2002. It was interesting to note that Brian McKeever was at these Olympics in Utah that year, so I felt a particular interest in his story.
I had no idea that so many disabled persons had participated in the Olympics; I had only heard of Marla Runyan, the visually impaired track athlete, since last year I read her biography, No Finish Line, which was definitely thought-provoking.
I wish the media would expand on these stories, since I am sure the public perceptions of persons with disabilities would become more positive. Education is the way to dispel myths and stereotypes, and eliminate ignorance.
I got mixed reactions when I informed family and friends I was going skiing. Some said, "That's great," and did not ask any more questions, or doubt my abilities. Yet, I did have one particular neighbor ask, "What are you trying to do—kill yourself!? I have tried skiing, and it needs a lot of balance and good visual acuity. I couldn't do it, so how can you?"
There is not much adaptation that a VI person needs for cross-country skiing, mainly just a person who serves as a guide, describing the terrain, such as size of the slopes of a hill, sharpness of turns, etc.
I have some usable vision, and can see if objects are in front of me, such as a tree or another skier, but cannot see the tracks that are used on the trails, so my guide did assist in making sure I knew which direction the tracks were going.
I had a great guide, just wanting to help me out, and have us work as a team; I did not have to worry about him being condescending, having to "spend my day with a special blind person."
He was there just to have some fun, and meet new people, the same reason everyone was at Ski for Light. It wasn't about "conquering blindness" or any other type of feel-good lines sometimes used to describe disabled sporting events.
We spent five days skiing various trails, perfecting technique, and just enjoying the scenery. I remembered skiing technique from last year, all of the skiing positions, the diagonal stride for flat areas, snowplow for downhill, and herringbone for uphill climbs.
My guide and I also discussed ski equipment, in particular non-waxable versus skis that need various kinds of wax for different kinds of snow conditions.
I competed in the 10K race again this year, and had a time of 1 hour 9 minutes, which I thought was okay—I'm extremely competitive with myself, and am a perfectionist, so I do wish I had pushed myself more to get a faster time, but I always have next year when SFL will be in Colorado.
I loved this year so much, and want to keep skiing. I called my local ski club, and will be attending their next meeting in March. I discussed going on one of their ski trips to one of West Virginia's local resorts.
I want to participate in recreational activities specifically for the visually impaired, but also want to be active in my community in recreation that is for anyone, not just for the VI, which is why I contacted the ski club. I think that persons with vision loss should use all the resources available to them. I have seen VI persons who will only go to blindness-specific recreation activities, and are afraid to try stuff in their community. I have also seen persons who feel that there is a stigma attached to VI-specific events, and feel they will offer no challenge. Both of these statements are incorrect, and I want to get the word out about this fact.
Did I Mention Social Networking?
by Joe Strechay on 2/11/2010 4:41:50 PM
Social networking, social networking, and more social networking! My name is Joe Strechay and I work for the American Foundation for the Blind as an associate in the AFB CareerConnect® Program. I am grateful to have the opportunity to share something that I am passionate about with you through this blog. Encourage your children to network and connect with other kids, students, adults, and professionals who are visually impaired.
There are many benefits to children with visual impairments interacting with each other. These can range from promoting the adjustment to blindness, finding friends with similar life experiences, and just making more friends. The truth is that other children with visual impairments can relate on many levels with each other. They most likely have dealt with similar situations at school, home, and in life. Because blindness is a low-incidence disability, children with vision loss are most often isolated from each other and we must find opportunities for interactions.
I strongly suggest that you and your family attend events where other children or teens with visual impairments will attend. This can be such a great experience for the entire family because it allows a visually impaired child to be in the majority, which is rare experience for them. Events could be hosted by statewide organizations of people who are visually impaired (NFB, ACB), parent organizations (NAPVI, POBC), or an event from your state's blind services program. Some schools for the blind offer camps or events that are open to students from outside of the school. The FamilyConnect website maintains both a directory of agencies who are active in your state and a calendar of events where you will find a variety of activities listed.
Getting involved in Paralympics sports is a great opportunity for students to network with other athletes who are visually impaired. The United States Association of Blind Athletes has representatives in most states, and they would be a great organization to contact. Most states have athletes who participate in Paralympics sports. These organizations sometimes provide clinics and expos on these sports. There are beginners skiing clinics—and more—available nationally.
The American Foundation for the Blind offers a number of message boards aimed at people who are blind or visually impaired. One of these message boards is called TeenConnect. TeenConnect was developed so teenagers could interact with each other regardless of where they live. Teens have the freedom to discuss most issues and there are a number of regular users ranging in age from 12 to 22 years old. The teens share advice on issues that they are currently experiencing including technology, career, school, college preparation, hobbies, blindness, and more.
The TeenConnect message board is monitored daily by AFB Staff to make sure the content and language are appropriate, but teenagers will be teenagers and some things slip through the cracks. We strive to provide the users with a quality experience and freedom of self-expression.
I want to make sure I mention that it is important for children with vision loss to be active in their community. Encourage your children to participate in organizations such as the Future Business Leaders of America, Distributive Education Cooperative of America, Key Club, student government, debating, model congress, Boy Scouts, Girl Scouts, sports, and more. There are scholastic sports that all students can participate in with a few accommodations.
Some social networking opportunities and resources to check out:
- The AFB Press book, Teaching Social Skills to Students with Visual Impairments, edited by Karen Wolffe and Sharon Sacks, would be a great resource for parents, families, and teachers who are hoping to help promote and teach appropriate social skills to their children. This book offers methods based on theories that have proven effective.
- AFB CareerConnect, where users can send messages to mentors who are employed in many fields. The safe message system will allow users to explore careers, interests, accommodations, and more. AFB CareerConnect offers many other resources and teen-appropriate material. Check out Aaron's Adventures in Employment and experience some entertaining educational multimedia materials.
- NAPVI, the National Association for Parents of Children with Visual Impairments is a national parents and families group with chapters around the country.
- NFB, National Federation of the Blind, is a consumer group.
- ACB, American Council of the Blind, is a consumer group.
- AFB, American Foundation for the Blind, is a national organization that offers many resources including web, publications, technology evaluations, professional development, career exploration, educational resources, content for parents/families and more.
- USABA, United States Association of Blind Athletes, is a membership organization that promotes sports for persons who are blind or visually impaired.
- Camp Abilities is a program that helps develop and conduct sports camps for individuals who are blind throughout the country.
- FBLA, Future Business Leaders of American, is an organization that allows students to learn business skills and participate in competitions.
- DECA, Distributive Education Cooperative of America, is a student organization that allows students to learn and compete in marketing-related events.
- Key Club is a service-related student organization that offers opportunities for students to give back to their school and community.
- Boy Scouts of America is an organization that allows males to learn skills, leadership, and participate in activities.
- Girl Scouts of America is an organization that allows female youths build skills, leadership, and participate in activities.
I challenge you all to get your children out and involved in social networking online and in person! Thank you for taking the time to read this blog and let me know your thoughts.
Hands-On Learning Thanks to New Technology
by Susan LaVenture on 2/10/2010 12:38:21 PM
I recently came across this interesting article about a high school in Alberta, Canada. They report that they are very pleased with their investment in "lab equipment designed to allow students with low vision, or no vision, to become active participants in chemistry, physics and biology labs."
It is great to see creative technological solutions to access problems in education. You can really sense the pride from the student who said, "Now, we could do it all ourselves."
Have any of you seen this technology in action? How up-to-date are the facilities in your child's school? Have you successfully lobbied for any improvements?
Is Your Child Ready for a Canine Buddy?
by Aerial Gilbert on 1/14/2010 11:24:11 AM
My name is Aerial Gilbert, I am the Outreach Manager at Guide Dogs for the Blind. I am also a graduate of the Guide Dogs program, working with my 6th Guide Dog, "Splash," a female German shepherd.
I was on the planning committee for the NAPVI Family conference in Costa Mesa in July and presented at the conference and gave an overview of the Youth Outreach Opportunities at Guide Dogs. After the presentation I was asked to submit the information that I covered on this blog so that you would have access to these opportunities, and also be able to have a resource to ask your questions about guide dogs.
K9 Buddy Program
Currently we have 50 K9 Buddies residing with families that have a child who is blind or visually impaired. We believe that a dog can make a remarkable difference in any child's life by fostering a sense of caring, companionship and a sense of responsibility through the human/animal bond. Our K9 Buddy Program matches specially selected dogs to become wonderful companions to visually impaired children and young adults. A dog can contribute to heightening of sensory development, motivating a child to learn and enhancing self esteem. The dogs come from Guide Dogs' own colony, but are not qualified to work as mobility assistance dogs. K9 Buddies are offered free-of-charge, as are working Guide Dogs.
The K9 Buddy program connects the child/family with our community of puppy raisers and other supporters. This connection is as beneficial for our raisers and other constituents as it is for the child and their family. The program also connects the family with other services provided by agencies and organizations
for the blind.
K9 Buddies are primarily placed in the eight Western states—the same territory in which we have puppies being raised and the staff to support these programs.
Is your child ready for a K9 Buddy?
- The K9 Buddy program matches dogs with blind youth under 18 years of age who have been diagnosed by an ophthalmologist as legally blind or with a degenerative eye disease that will render them legally blind.
- A K9 Buddy might be a good choice for a blind youth who exhibits the emotional stability and maturity needed to care for the dog (feeding, grooming, exercising) and will treat it humanely.
- A good candidate would be one who has a personal interest in having a K9 Buddy dog.
- The applicant and family agree to be the primary care providers for the dog and to monitor and encourage the applicant to actively participate in the care of the dog. The applicant's home must have a secure backyard or dog run and be a safe environment for a dog.
The K9 Buddy Program differs from our Guide Dog Program in a few key ways:
- K9 Buddies are not trained to assist with mobility. Therefore, children who have K9 Buddies and their buddy dogs are not granted access to public places (restaurants, shopping malls, grocery stores, hotels, public transportation, etc) with their dogs under the ADA.
- Veterinary assistance and counseling services are provided only to active guide dog teams.
Families interested in applying for a K9 Buddy will be interviewed in their home to evaluate the environment as well as to determine the particular traits the family is looking for in a dog so an appropriate match can be made. After matching the family with a dog, the family will receive training and guidance from a Guide Dogs for the Blind staff member. Ownership of the K9 Buddy by the family will be granted after completion of the course of training. K9 Buddies are considered pets.
If you would like to find out more about the K9 Buddy Program and how to apply, please call the Outreach office at Guide Dogs for the Blind at 800-295-4050.
Camp GDB is a 3-day camp for youth aged 14 to 17 who are legally blind. Campers will need to be able to care for their own activities of daily living. They will stay in our dormitory and share a room with another camper. Meals will be on campus and in the community. Camp GDB is free to qualified applicants, but families will need to provide transportation to our San Rafael campus.
Campers will explore the companionship, independence, and responsibility of the guide dog mobility lifestyle. They will receive hands on instruction with guide dogs with an emphasis on understanding the specific orientation and mobility skills that make for a successful guide dog user as well as the necessary fitness and endurance required for guide dog travel. They will have mentoring opportunities with successful guide dog users, including guide dog users who are other teens. Also, campers will learn about how our organization works and about the communities of support that enhance our programs. There will be plenty of opportunities for social activities and developing new friendships.
Holiday Ideas for Families
by Susan LaVenture on 12/1/2009 4:47:52 PM
It's hard to believe that it is December already and that the traditional holiday season began with Thanksgiving this past weekend in the United States. Hoping your family had a wonderful Thanksgiving weekend sharing time with your loved ones cooking, eating, and some maybe some R & R, or at least being able to have a looser schedule?
Around the world many families are beginning to plan and celebrate their family's cultural and religious holidays during the month of December and January to give thanks and to bring in the New Year. The FamilyConnect team has gathered together some great resources and ideas in preparation for the holidays for you and your family by creating a Holiday Guide for Parents of Children Who Are Visually Impaired. For those who celebrate by giving gifts we have the Toy Guide and a blog post written by Emily Coleman with her mother's perspective and ideas for sharing the holidays with a younger child who is blind or visually impaired. Others have added great suggestions in the comments section, and we hope that you will add your ideas as well.
I recently asked a mother of a teenager who is legally blind with low vision what the latest rage was for gifts for teens and she said video games, CDs, iPods, and cell phones were popular—to figure out which gadgets are accessible, you can visit AFB's AccessWorld magazine, which is a consumer guide to the latest technology for people who are blind or visually impaired, including cell phones and other electronic gadgets that kids love.
Gift cards are always good for teens so they can pick out their own movies and music. Audio-described popular movies for any age are also available through WGBH in Boston. Books and games are always a great gift for children of all ages. There are some great companies that offer wonderful books and games such as the National Braille Press and the American Printing House for the Blind. Both organizations have catalogues available.
For families that will be traveling during the holidays to visit family and friends or choose to celebrate by taking a family vacation—we found a great resource, Road Trip! Tips for Travel with a Visually Impaired Child, that was developed by Hadley School for the Blind, one of our FamilyConnect National Partners. Whether you stay close to home or travel afar this season it is a wonderful opportunity for you and your child to enjoy each other, whether it be interacting and socializing with others, learning to cook a new recipe, trying new foods, or just hanging out watching movies, playing games, or listening to music! Let us know how you're celebrating, either by posting your comments below, or by joining the conversation on our message boards.
All the best to you and your family this holiday season!
Tips for Travel with a Visually Impaired Child
by Sue Melrose and Ginger Irwin on 12/1/2009 3:59:28 PM
A driving trip or resort vacation for the whole family can be lots of fun, but how do you maximize the experience for a child with a visual impairment? Below, instructors Sue Melrose and Ginger Irwin, from The Hadley School for the Blind, which offers free distance education courses for family members of a person with a visual impairment, provide their expertise and some ideas to make your family getaway fun for everyone:
Share the plan: Keep the whole family involved in the travel planning process. Children and teenagers who know where they're going and what to expect are more willing travelers, especially if they have the opportunity to help pick out fun activities.
Map it out: Once plans take a definite shape, create a simple, accessible map of the travel plan for your child to trace with his/her finger. If traveling by car, a map consisting of paper and string, pipe cleaners and tape, or string over an existing map will do. This helps children understand the travel plan, track the distance traveled, and learn about maps as a useful tool.
Keep busy en route: If you can't see out windows, the world becomes very small when you get in a car. Combat confined-space fatigue by creating a travel bag with favorite activities like braille playing cards, an audio player, puzzles, and reading materials. "Making braille notes as little surprises along the way can make the trip more fun," says Ginger Irwin.
Stop and stretch: Be prepared to make more stops on the trip to get fresh air and take short walking tours of new locations, especially points-of-interest. Go on small gathering missions and collect simple tactile souvenirs provided by Mother Nature, including interesting rocks, pinecones, leaves, and sand. Melrose has a collection of bottles of sand from many road trips throughout the years.
A replica can be just as good: Trips to the gift shop are essential if you're at a large tourist destination. Buying miniatures of your location, like the Statue of Liberty, Mount Rushmore, or the Golden Gate Bridge, can help your child understand and tactically navigate your location.
Inquire about special tours: If you plan to go to museums, always call ahead and inquire about tours and accommodations for people with visual impairments. It is best to speak with management, as seasonal employees don't always know about these opportunities. Some museums and tourist attractions offer audio tours or special "behind the scenes" tours that are not advertised. The same rule applies to special activities and day trips off cruise ships and resorts. By calling ahead and explaining her visual impairment to managers of different day trips during a cruise, for example, Melrose was able to swim with dolphins and go zip-lining. "Explaining my abilities and limitations as a blind person helped the tour staff understand that it wasn't a risk to let me do these activities, they just had to communicate with me. It's important not to assume you won't be able to participate in fun vacation activities because you're visually impaired."
About Hadley: Founded in 1920, The Hadley School for the Blind's mission is to promote independent living through lifelong, distance education programs for people who are blind or visually impaired, their families, and blindness service providers. The world's largest educator of braille, Hadley enrolls more than 10,000 students in all 50 states and 100 countries each year. For more information, visit www.hadley.edu or call 800-323-4238.
Sharing the Holidays with Your Child Who Is Visually Impaired
by Emily Coleman on 11/16/2009 10:00:00 AM
Again it is the time of year that has families gearing up for another holiday season. For those of us with a child who is visually impaired we not only have to think about organizing our families, but also how to include our visually impaired children in a way that will be enjoyable to them. As a mom of one such child, I happen to have a few thoughts on this very topic. Important things to remember over the holidays are keeping with tradition, teaching in the moment, adaptation, and time management.
I understand that my four-year-old son who is blind, Eddie, doesn't always love every family activity, but neither does my older child who is sighted. However, I feel it is very important to stick with family traditions. I don't mean those traditions handed down to you that you've always hated and now think your children should suffer through. (Admit it; we all have a few of those.) I'm referring to family traditions that are important to you and to your family and give meaning to the holidays.
It might be hard to take our children to a big Thanksgiving dinner because it is loud, chaotic, and totally out of their routine. But, if family gatherings are something you like to do, you should definitely attend and take the opportunity to work with your child on adapting to new social settings. Show them around the unfamiliar house, introduce them to everyone (or have them say hi to family they know), and help them feel comfortable in their surroundings. Families should not skip traditions due to their child with a visual impairment; we all have been surprised to find new things they like that we never thought they would.
One reason I find it hard being the parent of a visually impaired child is because you are always teaching, which happens even during the holidays. As all of us know, without sight a child with a visual impairment needs everything explained to them in detail. Lengthy explanations can be tiring, and for those with visually impaired children that are communicating verbally, the questions can seem endless. That is why it is important to take advantage of common holiday occurrences by teaching in the moment.
With three children, I hardly have time to sit down with Eddie and explain all aspects of the holidays. So, while we are selecting a Christmas tree, baking cookies, or making a turkey I try to describe every step of the process and let him get his hands dirty. For example, in the process of preparing the turkey, I let him feel the skin and discuss the parts of the turkey. This includes where the stuffing goes, even though that explanation tends to make stuffing a little less appetizing, understandably. Including him in the process is surprisingly easy. Making the turkey is something I'm going to do anyway, so I might as well have him experience the process along with my sighted children.
For children who are visually impaired, we also are often required to adapt activities so they can enjoy them, which is just as true during the holidays. For instance, we all have our favorite Christmas stories and many kids just like to listen to those wonderful tales, but we need to remember to let them experience the stories through braille or real objects as well. For braille readers, be sure to get copies of these stories in braille so they can read aloud to the family. For all children with visual impairments, including nonreaders, simply take your favorite book or song and find as many real objects from that story that you can and put them into a bag. Then, as you read the book or sing the song, you can hand your visually impaired child the actual item mentioned. Since they are not able to view the pictures, it will help their imagination define what they are hearing.
The final item I want to mention is time management. Adapting activities, trying to maintain traditions, and teaching in the moment do require some extra time when considering our children with visual impairments. We tend to rush our way from Thanksgiving through the New Year, so I recommend trying to stop, take a breath, and enjoy the season.
Instead of cramming the month of December with multiple plans, pick your favorites and take the extra time needed to help your VI child fully experience this time of year. Revel in the look of understanding we get from our kids when we do an activity justice. I feel gratification in explaining something in its entirety and feeling I succeeded and that success is multiplied during the holidays.
I've only mentioned a couple quick examples of how I include Eddie, but we would all enjoy hearing how you include your child with a visual impairment in holiday activities. Do they help you bake cookies, wrap presents, or make ornaments? If you have any great suggestions or tips please post them to share with the rest of us. Your pearls of wisdom might be just the idea someone else could use to make this holiday season truly memorable.
Parents of Blind Children Were Also Affected by the Philippine Typhoons
by Susan LaVenture on 11/3/2009 12:03:22 PM
Many of you know Judith Lesner, our community moderator on the FamilyConnect message boards. She is a mother and has been an advocate for many years for families of children with visual impairments. She also has been a great support to the National Association for Parents of Children with Visual Impairments (NAPVI) affiliate in the Philippines. Please read Judith's blog post, where she has given us more important details about how the recent typhoons in the Philippines have affected our friends.
Those of you who attended the last FamilyConnect conference in Costa Mesa know that NAPVI has an affiliate in the Philippines. It is called Parents Advocating for Visually Impaired Children (PAVIC). It is a thriving organization based in Quezon City (near Manila) with groups in various parts of the country. They are the national parent training and advocacy group in the Philippines. They receive support from Resources for the Blind (RBI) and Hilton-Perkins as well as other corporate donations. However, their resources are strained as government support for children who are visually impaired is limited by the national economy.
Just over a year ago, Susan LaVenture and I attended their national conference in Quezon City. I had lived in the Philippines in the 60s and had returned in 1996 for a visit. I couldn't believe the changes in services for children who are visually impaired. This group had organized and educated their members and had made a great change in what has been made available to these children. We met with some of them again in Costa Mesa and they were thrilled to have the opportunity to come to the U.S. and see what we are doing here.
I have stayed in touch with the group and contacted them after the major typhoon hit the Metro-Manila area in October. The devastation of homes in the area was enormous. PAVIC was holding a conference at the time and they were all trapped in the hotel where it was being held. They soon found out that seventeen families in the group lost their homes and were totally wiped out. PAVIC has been very busy collecting donations and purchasing such basics as food, water and clothing for these families to help with their survival. Individuals and the California School for the Blind Student Council have made donations of money to help these families but more help is needed. Also, PAVIC had previously arranged with Philippine Airlines Foundation to ship toys and educational material for blind children for free. Prior to the disaster it had shipped 8 boxes of new and used toys and educational material for PAVIC to distribute. They are particularly interested in acquiring braillers, braille books, slate and styluses, books on tape and tape recorders for students with visual impairment. If you are interested in helping in any way, please contact me at email@example.com.
We're on Facebook!
by Susan LaVenture on 10/20/2009 1:37:36 PM
We've recently been diving into the world of social media by conducting focus groups on the additional social-networking features parents would like to see added to FamilyConnect. In the coming year, we will be adding tools that allow you to connect more closely with the people you have met on the FamilyConnect message boards, and to meet new people who share your situation and daily concerns.
In that same spirit, we've now joined Facebook. If you already have a Facebook account, we hope you will find this a useful way of getting news from FamilyConnect and communicating with us, too. Please consider becoming a "fan" of FamilyConnect on Facebook! And please use the comments section below to tell us what other social networking sites you use, and what features you would most like to see on FamilyConnect.
Whenever you see a post about FamilyConnect in your Facebook News Feed, please use the "Like" button if you enjoyed the post, or "Comment" on it to allow more people to see the update and generate conversation. Also, make sure to use the "Share" feature to ask others to join the FamilyConnect fan page. We want to spread the word about the great support and ideas that FamilyConnect offers, and would love your help.
Thank you for continuing to make FamilyConnect such a vibrant and supportive community!
FamilyConnect Celebrates White Cane Day 2009
by Susan LaVenture on 10/15/2009 3:21:42 PM
All parents worry about how they can help their children become more independent, and what the right timing is to introduce new levels of independence. This is probably even more true for parents of children who are blind or visually impaired. We want our children to make their way in the world, but worry about their safety, too.
Acceptance in the community, and even within the family, can also be an issue. Mary Fuller writes powerfully about how she had to put aside her own strong emotions upon seeing her little girl using a cane for the first time, in order to give her the encouragement she needed. And about how much it meant to her daughter when her grandpa came to accept her cane, too.
The Alfonso family dealt with this issue, too, when their daughter Allie was resistant to using her cane where her friends could see. But her parents persisted, and now Allie is much more comfortable using her cane in public. You can watch their video, and others, in the FamilyConnect Community area.
Good orientation and mobility skills start young. I encourage you to read this FamilyConnect article for some ideas about Helping Your Preschooler Practice O&M Skills, and listen to our audio interviews with Julie Brown about Three Things Parents Should Know About Orientation and Mobility. And let us know how it is going for you and your child!
Celebrating National Disability Employment Awareness Month
by Scott Truax on 10/14/2009 2:03:25 PM
I am delighted to post this message as the majority of my career has found me speaking with families about the importance of focusing on skills that lead to employment. As you and your child travel together through the school system there will be many terms and phrases that may seem foreign to you. Transition plans, expanded core curriculum, and assistive technology are all important terms that need to be understood because they have a direct impact on employment. It is our hope that you may use both the FamilyConnect™ and AFB CareerConnect® web sites to assist you in navigating your local school system. With October bringing National Disability Employment Awareness month, it is a time for a sharp focus on the important role families play in this effort.
It is understood that most children grow up and in some fashion end up employed. Adults with vision loss hold jobs in almost every imaginable occupation including medicine, science, business, and engineering to name just a few. Employment may occur through careful planning, connections and networking, or just plain happenstance. Employers also have a natural expectation that employees will be able to get to work, use the equipment found in that setting, and be a part of a team.
Individuals with vision loss may face barriers to these natural expectations. For instance, have they learned the necessary travel skills, and if so, is the job located on a transportation system? Is the equipment adaptable and will the new employee know how to use them? Will co-workers react in a normal way or will the new employee with vision loss encounter unexpected social challenges? These are all issues in which you and your child's educators play a major role in preparing your children. But, take heart! The path to employment has been paved by many highly successful people, many of whom may be contacted through the use of the mentor component within AFB CareerConnect.
With this blog, hopefully, we can open a dialogue in which we can talk about how children with vision loss can grow up and become successfully employed in jobs or careers they are good at doing and really enjoy. You may wonder how someone with vision loss is able to do typical tasks at work. I invite you to visit the CareerConnect virtual worksites to see adapted work settings. As well, you may view videos showing visually impaired employees in both office and retail environments. If you are still wondering about some things after seeing the worksites and/or viewing the videos, this would be a good time to connect with one of our CareerConnect mentors to do an informational interview and ask them your questions.
CareerConnect has many audio interviews of adults with vision loss who discuss their careers with teens and also has over 30 Success Stories that will inspire you. FamilyConnect has content that speaks to how you, as a parent or family member, can encourage your child to develop their skills and independence at every age. Another tip we'd like to encourage you with is to use the FamilyConnect message boards to communicate with each other as questions arise.
It is important that we encourage the development of skills and independence at an early age. Through the use of available resources you can enjoy a journey you never thought possible—negotiating the pathway to independence for your child and realizing that most anything they can imagine is possible!
Caitlin's Top 10 Rules for Incoming Freshmen
by Scott Truax on 9/17/2009 2:58:13 PM
Hello, everyone. When it comes to negotiating a college campus for the first time, who is a better expert than the visually impaired student who has just learned everything the hard way? Many thanks to our visiting blogger, college sophomore Caitlin Hernandez, for this funny and true back-to-school list of survival strategies for blind college students.
From my vantage point as a soon-to-be-sophomore (at the original time of this writing, I have just one more week of my freshman year to plow through), I present you with the top ten things I have learned this year at college vis-a-vis being a visually impaired freshman.
Feel free to redistribute, enjoy, and (hopefully) snort with laughter. Here's hoping that my brainless mistakes will help the kids who come after me. All I ask is that you think no less of me after reading this list, which flaunts some samples of my own ineptitude in a most vivid manner.
I Remain Yours Most Sincerely,
Caitlin Hernandez's Top Ten (10) Rules That Every Incoming Freshman (Who Happens to Be Blind) Should Most Definitely Know
(also known as, What They Don't Tell You at Freshman Orientation)
It's Time Again for Kids to Go Back to School!
by Susan LaVenture on 8/25/2009 1:02:56 PM
I hope you had an enjoyable summer spending some extra time with the kids with looser schedules. Depending on which part of the country you're from, your kids may have already gone back to school and some are just getting ready to start after Labor Day.
As a mom who's raised three children I feel nostalgia for the "back to school" time of year as the children grow and mature, and each new year brings new adventures and challenges. Our early preparation includes making sure the children have stylish clothing, school supplies, and in today's world, making sure they are up to speed with the latest technology!
Then there's being the "mother tigress" that is always resting in the background, ready to jump in case we need to advocate and protect our kids throughout the school year. When we have a child with special needs it is all the more reason to be aware and involved with our child's educational needs and to make sure their needs are being met.
We have different personalities and parenting styles. For me, I tried to get along and communicate with the school's Individualized Education Plan (IEP) team and made sure that I educated myself to be a professional parent and fully prepared to participate with and in the IEP Team meetings. If you become educated about special education and the Individuals with Disabilities Education Act (IDEA) and how it pertains to your child's individual special needs, you can become a confident advocate for your child.
There are several ways you can get started by going to the home page of FamilyConnect and studying the information that is available on the site and the many partner organizations that also offer numerous resources. Check out the Education topic where you can find articles about knowing your rights, the expanded core curriculum for students with visual impairments, options for educational settings, and assessments (evaluations) that help determine what your child's educational needs are, which the team needs to consider when developing the IEP.
There is also an Overview of the Service System for Visually Impaired Children toolkit that you can download in English and in Spanish. You can keep it in a notebook for your information and available to you as a reference and checklist as you prepare for and attend your child's IEP meetings.
Additional reading materials that are loaded with information on all aspects of educating children who are blind or visually impaired, including children with multiple disabilities, can be found through the American Foundation for the Blind (AFB)'s bookstore and the National Association for Parents of Children with Visual Impairments (NAPVI)'s publication lists. A Parents' Guide to Special Education for Children with Visual Impairments can be a reference in your personal library throughout your child's educational career.
Most of all—enjoy your children, spending time with them, having conversations with them, and listening to their ideas and getting to know their special qualities and personality as they develop and define who they are along the road to independence.
What About Description for Movies or Educational Media on DVD?
by Paul Schroeder on 6/22/2009 5:07:42 PM
It's a good news, bad news story. The good news is that description is beginning to be included on DVDs, but the bad news is that only a few titles include description. The situation may be getting better for educational media used in classrooms, but first, a quick discussion of DVD movies and TV shows.
Since many movies are now coming to theaters with description, you'd think that the releases on DVD would also have the description. Unfortunately, you'd be wrong. Only a handful of movies have been released with description and it may not be obvious from the listing of features on the DVD.
Since description has already been done for so many movies, why isn't the DVD released with description? A good question indeed. I've been told that some studios claim there isn't room on the DVD to fit the description track. Sure, it's more important to have the commentary track from the director's third cousin than to make room for a description track. Maybe if we all start asking for described movies on DVD we can convince Hollywood that there's an audience interested in enjoying movies with description. After all, most movies are released with captions. And, perhaps the greater capacity provided through Blu-ray might help.
Anyway, the ever helpful folks at the Media Access Group at WGBH maintain a list of accessible DVDs.
If you're a fan of PBS programs, you may be able to find many of these with description. A good place to shop for accessible PBS programs on DVD is also at WGBH, shop.wgbh.org/category/show/3241.
Thanks to the efforts of the American Council of the Blind (ACB), I am happy to report that "The Miracle Worker" is now available on DVD with description. You'll get to experience a powerful story about Helen Keller, help show that there's interest in video description, and help support a worthy organization since a portion of each order benefits ACB. Go to
By the way, this is the 30th Anniversary Edition of
The Miracle Worker (the one based on the 1979 TV remake starring Melissa Gilbert as Helen Keller and Patty Duke as her tutor).
Besides the lack of available DVD titles with description, there is another problem with accessing described movies on DVD. The menu or list of choices that is displayed when you put a DVD in a player is currently not accessible for someone who cannot see the screen. PBS and the Media Access Group produced some excellent examples of an accessible DVD menu using spoken guidance to help the user with vision loss navigate through the menu. Unfortunately, this system is only available for a handful of American Experience programs so far. So, here's another challenge, though as I mentioned in my previous blog, we're working on legislation to require accessible controls on equipment like DVD players.
OK, I know it's summer, but it's not too early to start thinking about school. Specifically, I want to make sure that any education video shown in a classroom where a blind student is present is made available with video description. Although all educational media is not currently required to be accessible for students with disabilities (something I'm hoping we can work to change through legislation), schools must ensure that media used to instruct a student with a disability is accessible.
And, as I said, there is beginning to be more accessible educational media available with descriptions (thanks in part to funding provided by the US Department of Education) and the work of our friends at the Described and Captioned Media Program (DCMP). For many years, The DCMP has worked to make educational media accessible, initially by adding captions to media and more recently by including descriptions as well. Among other important services, DCMP loans described and captioned educational media to schools and directly to families with students who are deaf, blind, hard of hearing, visually impaired, or deaf-blind. Registration at the DCMP site is easy. Check out their profile on FamilyConnect for details.
AFB worked with DCMP to create guidelines for describing educational media. These guidelines help to explain why description is important and how to make educational material accessible through descriptions. You can access the guidelines, known as the "Description Key for Educational Media," on the DCMP site at
There are organizations doing some innovative work to improve access to multimedia through captions or descriptions. For example, CaptionMax, which has developed the "Universal Access to Media (UAM)" program. Among other things, it includes a talking menu system for DVDs and something called expanded descriptions. In Expanded Description the video program is paused briefly, allowing additional time to thoroughly describe a scene. This allows more extensive description of complicated visual elements like graphs, diagrams, and on-screen text. You can see examples of their work online.
Another example of innovative educational media description can be found in the work of Bridge Multimedia.
It has developed an approach called "EXTRA InfoTM" to provide important background facts and details such s set, costume or character descriptions helpful to blind or visually impaired audiences.
EXTRA Info can be accessed online as streamed audio or as a scalable text file.
I know that access to video with descriptions on DVD or via the web seems complicated. And, right now, it is more complicated than it should be. Nonetheless, I hope you'll check out the many resources included here and begin to experience the satisfaction and opportunity for richer information that awaits you with described media. And, as always, I invite you to write a comment to let us all learn from your experience.
Join Us at the International Family Conference: Families Connecting with Families From Around the US and the World!
by Susan LaVenture on 6/12/2009 4:49:42 PM
It's not too late to join us at the International Family Conference that will be held in Costa Mesa, California, July 17-19, 2009! The excitement for the conference is heating up! To date we have families registered from 28 states, Puerto Rico, and 5 countries: Bahamas, Canada, England, Philippines, and Uzbekistan.
The conference program includes 2 stellar keynotes, 40 workshops on a wide variety of topics, 22 eye condition networking sessions, family events, and receptions, all with great food included in the low-cost registration fee!
An incredibly comprehensive children's program is being provided and planned for kids who are visually impaired, blind, and deaf-blind, including those with multiple disabilities and their brothers and sisters, from birth through adulthood. A special highlight includes a Paralympics program for kids 8 years and up coached by athletes who competed in the Paralympics Summer games in Beijing in 2008.
Family events include the Opening Welcome Friday night reception with entertainment, refreshments and a chocolate fountain—an opportunity for families to network. Saturday night we will be hosting a Family Movie Extravaganza Night featuring a popular movie for families that will be narrated and described for blind and visually impaired viewers.
The National Association for Parents of Children with Visual Impairments (NAPVI) has locked in a special discounted room rate of $119 per night at the Hilton Orange County/Costa Mesa, and the deadline to get the special discounted room rate has been extended to June 20th. So if you decide to join us, make your hotel reservation ASAP and ask for the NAPVI discounted rate.
Some families are using this opportunity to plan a family vacation since we are so close to Disneyland, Knotts Berry Farm, and beaches!
The conference program and registration are available on line at www.FamilyConnect.org/conference in English and in Spanish. You can register online or you can download the documents and mail them in to the NAPVI national office. If you have any questions you can call the NAPVI national toll-free line at 800-562-6265.
Hope to meet you and your family in person in California!
NAPVI Executive Director
Video Description: Must Hear TV?
by Paul Schroeder on 6/8/2009 5:08:06 PM
This week I'm providing information about video description and TV. I certainly remember spending far too many hours sprawled on the couch watching bad TV during my summers off from school. I'm not even going to share what I watched, just trust me, it was "Love Boat" bad. Fortunately, much of it I'd seen so many times before that I didn't really need any description.
These days, children with vision loss are especially at a disadvantage if they don't know what happened on the shows that their friends are watching. Like it or not, TV programs inform us, entertain us, and even set cultural behaviors and modes of dress and style. Much of this information is conveyed visually and without description; too often, blind kids are left out.
Well, I don't know if TV has gotten much better, but if you want to watch a TV show with video description, unfortunately, the news is not very good. Very few programs include description, and getting the description to actually work on your TV is also likely to be painfully difficult. But, fear not, there is something you can do to make this lamentable situation better. And, remember, on June 12, US TV stations are switching to digital from analog, so hopefully you've already prepared for the change.
First, what is the situation concerning described TV programs? The bright spot in described TV programming was, and remains, public TV, supported by the Public Broadcasting Service (PBS), which includes video description on a large number of programs. The Media Access Group at WGBH led the way here too, just as it did with describing movies, through its Descriptive Video Service®. The first video described program aired on PBS in 1990. Now, many programs for children—such as Arthur, Barney and Cyberchase—as well as popular series like Nova and Nature are regularly described. Nickelodeon provides description for "Dora the Explorer" and "Go, Diego, Go!"
Among traditional, broadcast commercial networks, CBS and Fox air a few described programs. For example, CBS offerings include crime dramas NCIS, Criminal Minds and CSI, and occasional movies or miniseries. And, if you're a fan of The Simpsons (Fox), it's described. And, several movies that air on the Cable channel Turner Classic Movies also include description.
WGBH has established a good site for information about TV programs available with video description. The site is at
For a brief moment back in 2002, things were different and hopes were high for more TV shows with description. Beginning in April 2002, the major networks—ABC, CBS, Fox and NBC (along with major Cable networks such as Nickelodeon, USA, and Lifetime) were required to provide approximately 4 hours each week of described prime-time or children's programming. But, the requirement was struck down by a federal court just a few months later in November 2002 and eventually description was discontinued on most of the programs that had started to include it.
The lack of described TV programs is not the only challenge. Unfortunately, it's hard to actually get descriptions to work on your TV. Video description has been provided over a special channel called the Secondary Audio Program (SAP) channel. With the transition to digital TV, the SAP channel will no longer be used. The good news is that digital channels allow for video description to be included with the digital signal. The bad news is that there are lots of barriers that can keep you from getting description. Because video description is not very common for TV programs, it's fair to say that most networks and local stations don't know about the special audio channel available for description. And, what's more, finding the audio channel among the complicated menus on your set-top box or TV controls is often like finding that needle in the haystack.
WGBH has set up a web site for digital TV issues at www.dtvaccess.org. You can find an explanation of video description and digital TV there. The Audio Description International web site, a project supported by the American Council of the Blind (ACB), also has information about video description on TV including a fairly pessimistic discussion of digital TV challenges.
So, what can you do about these multiple challenges? First, never underestimate the power of consumer requests. You should contact the networks that carry your favorite shows and ask them to provide video description. If you subscribe to Cable or satellite TV, you should contact your provider to ask how to access video description for programs like those aired on PBS where description is provided.
AFB is also working to increase the amount of TV programs with description and to make it easier to operate television receivers for people with vision loss. We are part of a coalition that is working to pass legislation that would require TV programs to include video description and to ensure that TV receivers would transmit it. The legislation would also require manufacturers of televisions and the set-top boxes to make it possible for someone with vision loss to operate controls and review electronic program guides. The proposed law is called the "Twenty-first Century Communications and Video Accessibility Act," and you can find more information about this on our web site, or on the coalition site at www.coataccess.org. Hopefully, one day described programming will be as common as closed captioning, which is now required for virtually all TV programming.
OK, your turn. Try to check out a PBS program, or one of the other programs made available with description and let us know how it goes.
From Proud Mom of College Graduate
by Susan LaVenture on 6/5/2009 5:25:41 PM
As a sequel to my blog post "To My Son With Love," I am proud to announce my son Alex just graduated from Cornell University magna cum laude!
Alex, born a healthy, 10 lb. baby boy, was diagnosed with a rare malignant eye cancer at 10 months old. As parents, we were devastated. The whole world felt like it was going to drop from underneath us that day.
Alex's right eye was removed immediately to save his life and he underwent over 5 years of cancer treatment to save his remaining eye and his life. It changed our whole family's life—years of a regimen of putting Alex under anesthesia to treat and monitor the sight in his remaining eye, enduring the suffering and anxiety that we experienced as parents, trying to continue to manage a stable family life with his siblings (brother and sister), medical bills, and work.
Would I ever have believed that today, 21 years later, he would be alive to make his family and those around him so PROUD!!! Alex today is a bright, healthy survivor and has overcome. He is an intelligent, handsome young man who is visually impaired but has not held back on living his life. In fact, we could all learn from him; he enjoys life to the fullest, even being visually impaired. He loves to learn, travel and experience life. He is a great human being and friend to me and his friends; he is extremely popular. He worked really hard and experienced a normal college social life—more than I even want to know about!
It was an incredible celebration for family and friends as he received his special degree magna cum laude, which he earned with his thesis combining his major in psychology with neuro-scientific research he accomplished in Hong Kong during his internship and at Cornell University alongside the top scientists in the field—and being published as an undergrad!
Three days after Alex graduated he traveled off to Togo, Africa, to work on a project to help engineer water pipes into a village that needs water supply! Can I now live through my son? This is only the beginning of his accomplishments!!!
To my son, with love and tears of pride: you've made me abundantly proud.
I love you dearly,
Video Description and Summer Movie Fun
by Paul Schroeder on 6/2/2009 9:16:52 AM
Ah summer, beloved by children anxious for the freedom and fun of lazy days and family time! There are indeed many great family activities to do during the summer, and Hollywood is hoping that seeing movies is high on your list. I know the new Harry Potter movie (coming out in July) will be on my family's list. This month I'm using this space to help familiarize you with "video description" (also sometimes called audio description), which is designed to make movies, TV programs and educational media more enjoyable and accessible for people who are blind or visually impaired. And I suspect, more enjoyable for their sighted family members too.
This week I'll try to explain video description and focus on movies. After that, I'll turn to the challenge of video description and TV programs and on DVDs. And, although school is winding down, I will also address video description as a method for making the video media used in classrooms more accessible (please be sure to visit our newest partner page to learn about the Described and Captioned Media Program, which I'll say more about in a later post). Finally, I hope we can have a discussion about your experience with video description.
First, a Word or Two About Me
I am AFB's Vice President in charge of programs and policy. I am also blind, having lost my sight when I was 18 months old. I am married and have two children (both of whom can see and who LOVE going to the movies and watching TV).
As a child, my parents encouraged me to be curious and indeed I was and still am. I am the guy in the room who won't stop asking questions. While I suspect that I would have been curious regardless of my vision loss, I think that everyone who is blind probably has experienced far too often the frustration of not being able to see what is happening on a TV show or in a movie. I'm sure I drove my parents and brothers crazy always asking "what happened?" while we were watching TV or a movie together, and I'm still bugging my family today with the same question. Unless you have tried watching a movie or a TV show from another room or while driving a car you might not even realize how much of a story depends on the action that takes place in between or in place of dialogue. I know that my wife and daughters look forward to going to movies that are video described so that we all get the full experience of the movie without "shushing" from other patrons and without the stress of trying to decide what to describe in a quick whisper without interfering with the dialogue.
What Exactly Is Video Description?
Video description is a technique that incorporates a recorded, narrated description of visual action and key information in a scene into natural pauses in a program's dialogue (WGBH, a public broadcasting operation in Boston, brought the concept of description to TV and movies in 1990). Now, new movie releases often come out with video description and/or closed captions (the technique for providing access for people who are deaf or hard of hearing to see captions of the dialogue). You can see and hear some examples on the WGBH web site:
If you are interested in finding out about movies being released with video description, the best place to go is the "MoPix" website at www.mopix.org (established by WGBH). If a theater is equipped with MoPix technology, a blind customer simply goes to the theater, obtains a pair of headphones at guest services, and listens to the description of onscreen visual action taking place during the movie (through the headphones) while listening to the movie audio in the theater. Generally, the description is timed so that it doesn't interfere with the movie dialogue and sound effects. Because the description is transmitted through special headphones, sighted patrons are not disturbed by the additional audio track. This way, the movie can be enjoyed by moviegoers who are blind and sighted simultaneously.
Unfortunately, not every community has a MoPix-equipped theater. I'm lucky to live in a place where we regularly attend movies at four convenient, MoPix-equipped theaters, but I know this isn't true, yet, in very many places. However, you can change this by working with your local theater to urge them to add the technology. Be warned, it probably won't be easy, but there is a great story on the MoPix website about how it can be and has been done successfully.
Not every movie comes out with video description either. But, an increasing amount do. Right now, if you can get to a theater with the MoPix technology, you might be able to choose among such movies as "Up," "Night in the Museum 2: Escape from the Smithsonian," "Star Trek" and others. And, you might be surprised to find that some movie studios will agree to add description if asked. We actually requested description for two movies, and the studios agreed to add it before the movies were released. You can read about the story on the AFB blog.
One other caveat: The MoPix headphones I've used aren't perfect. They're kind of bulky (pretty old school for iPod users) and you have to balance the headphones on the edge of your ears so you can simultaneously hear the movie soundtrack along with the narration. As is true of all technology, I believe that as more theaters add Mopix and more consumers seek out theaters with the technology, the headphones will be improved due to customer demand.
OK, your turn, I'd like to hear from families about your experience with video description. How was the description experience? If you can, please take in a movie this weekend with video description and write to tell us about it.
Happy Mother's Day!
by Susan LaVenture on 5/11/2009 12:34:13 PM
Hope you all had a nice Mother's Day with your families. I had a great day—it was really restful (so much so that this is a belated Mother's Day wish to you all!).
As mothers we are always taking care of everyone else's needs and it's difficult to carve out time for taking care of you! It's especially important for parents who have children with medical and educational issues; with all of the additional appointments and preparation it takes, it's very easy for mothers to put their personal needs aside. As I've heard quoted before from a comedian: When traveling by airplane and the flight attendant gives the safety briefing, he/she says, "If traveling with a young child, please make sure to put your air mask on first so you then will be able to assist the child with their air mask!"
It's true we need to take care of our mental and physical health in order to care of our families. So please, I encourage you to take time for yourself to recharge your batteries—no matter how difficult it seems for you to do, whether you feel there is not enough time in the day or if you feel guilty about doing something for yourself. Any helpful hints from other mothers out there who have found ways to either schedule or incorporate into their lives time for themselves?
Space Camp: Where Blind Kids Can Reach for the Stars
by Dan Oates on 5/7/2009 12:29:40 PM
Hi! My name is Dan Oates and I currently work at the West Virginia School for the Blind as an Educational Outreach Specialist. I have been in that position for 14 years and for the previous 14 years I was an Orientation and Mobility Instructor.
Since 1990 I have had the privilege of working with the staff at the U. S. Space and Rocket Center in Huntsville, Alabama, as a consultant for their programs for special populations. I initially started with the program for the blind and visually impaired called Space Camp for Interested Visually Impaired Students (SCIVIS) and since have assisted with programs for other populations. Most recently, I helped co-found Little People Space Camp, which just aired on The Learning Channel program "Little People, Big World" in April of 2009. Everyone gets 15 seconds of fame and that was mine! Now that it is over and the booking agents haven't called, I can get back to my life and realize that acting isn't my strong suit.
SCIVIS provides a camp-like experience for children and adults based around the central theme of astronauts or aviation. There are two possible tracks: Astronaut Training and Pilot Training (based loosely on the "Top Gun" theme). In each track there are programs for children at the elementary, middle, and secondary school level.
Space Camp runs throughout the year with students attending from all over the world. Our program, SCIVIS, occurs during the later part of September each year and attracts between 150-200 students each year. Many foreign countries have sent children in the past—Canada, Australia, Ireland, England, to name just a few.
I am often asked, "Why should my child go to a program just for the blind and visually impaired when they are placed in a 'mainstreamed' situation all year long?"
This one takes a while to explain but I'm assuming that a blog allows one the time to do this. When I first became involved in 1990 I learned that the program stressed math and science, and I thought this was a great place to learn those areas of a curriculum. As the years passed and as I got wiser, I began to notice something. Campers from the mainstream setting don't get to spend enough time with their blind and visually impaired peers, and when they do they really enjoy it. All kids need to spend time with their peers. Blind and visually impaired kids are lucky to have two peer groups—their sighted peers and their blind or visually impaired peers. Spending time with each is important.
So often kids who are in the mainstream environment may be the only blind or visually impaired person in the school, county, or district. I've heard more than one child over the years with albinism say, "Look over there, Mom, there's someone like me!" Powerful comments, and Space Camp gives kids a whole week to explore "someone like me" doing really cool stuff.
Space Camp obviously isn't the only possible camp experience for our children, but what it does provide is a chance to be surrounded by some of the coolest simulators in the world.
The other question I often get is why our program runs in September, during the school year and not during the summer. Space Camp's peak season is the summer and there are about 600-800 campers there each week from the middle of June to the middle of August. Tuition at that time is about $200 to $300 higher than our program in September. Also the adaptations that are made for the SCIVIS week are many, and those could not occur in an environment of 600 other students.
All of the programs are closely monitored by Space Camp's Education Director. National Standards for Math and Science are closely followed by all programs offered to children in grades 4 through 12. If you think about it, your child is just transferring from one school to another for one week and learning specific curriculum in a couple of content areas. Don't know if that helps, but it has provided some assistance in the past. Each district takes a different spin on how out-of-school learning occurs and what is defined as an excused absence.
Please feel free to ask me any questions you have about Space Camp, and I hope to see some of your children there in the years to come!
Join Us This May for Healthy Vision Month!
by Susan LaVenture on 4/21/2009 1:03:11 PM
Did you know each year in May the National Eye Health Education Program (NEHEP) of the National Eye Institute (NEI) spearheads Healthy Vision Month along with associations that provide vision rehabilitation and eye care services? Both NEHEP and NEI are resources you should know about—they are the national federally funded arms in the United States, NEI, focusing on eye research and NEHEP on public eye health education.
The Healthy Vision web site offers free resources and materials for adults and children in English and in Spanish; information on examinations and prevention; literature citations and abstracts; and organizations to contact for additional information.
It's important to encourage eye health for the whole family, whether a family member is visually impaired or not. There is a myth I've heard about that some people think if you are visually impaired or blind it's not necessary to go for regular eye exams. This is untrue: it's extremely important to promote eye health for our visually impaired kids to keep their eyes healthy. Having regular eye care could prevent other secondary conditions that can occur if left untreated from the child's primary eye condition. Promoting eye health for the whole family, including members who are not visually impaired, is essential for prevention as well; in many cases eye diseases have been scientifically linked to genetics and can be hereditary in families.
There has been great progress in eye research and in treatment methods—with regular eye exams and care under an eye care professional, early detection and treatment can sometimes save sight!
Progress Being Made in Research with Stem Cell Therapy and Corneas
by Susan LaVenture on 4/10/2009 12:50:26 PM
Given that there have been a lot of questions and discussion about stem cell research on the FamilyConnect message boards, we thought you may be interested in this new breakthrough in stem cell research that was reported in ScienceDaily today: "Stem cells collected from human corneas restore transparency and don't trigger a rejection response when injected into the eyes that are scarred and hazy, according to experiments conducted in mice by researchers at the University of Pittsburgh School of Medicine." In reading the article it sounds like this is a real breakthrough that could lead to promising treatment for scarring and cloudy corneas.
As a member of the FamilyConnect community, please feel free to discuss your ideas and sharing new information and resources with other parents; this is your forum.
Happy Spring and have a good weekend!
Assistive Technology: How Do You Decide What Tools Your Child Needs?
by Ike Presley on 3/31/2009 2:20:45 PM
Hi, my name is Ike Presley. Yes, I am kin to Elvis, but not close enough to count...ninth or tenth cousins. Wait till you hear me sing! No, maybe you don't want to do that. Anyway, I would like to have a discussion with you about the use of technology by youths and adults who are blind or visually impaired. This topic is referred to as assistive technology (AT) and is one of the subjects in the Expanded Core Curriculum (ECC) that is essential to the education of students who are blind or visually impaired.
I am currently a National Project Manager for the American Foundation for the Blind in our Atlanta office and have just completed a book for AFB Press titled, Assistive Technology for Students who are Blind or Visually Impaired: A Guide to Assessment, with my co-author Frances Mary D'Andrea.
I was born into a family with a history of congenital cataracts. Somehow Elvis missed this part. Anyway, it's all over my family: brother, cousin, uncle, niece, grandfather, and several of his brothers and sisters. I received very few services during school, but I'll go into that in another post.
After completing my Masters at Florida State University I moved to Atlanta, GA, and began my career as a teacher of the visually impaired. I taught as an itinerant teacher for four years in one school district and then two more years in a neighboring district.
Then I finally got my dream job, a high school resource room for students who are blind or visually impaired. I taught at this school for 7 years where all my students took vision as one of their classes. I loved getting to have the students for several years and getting to work with classroom teachers who were learning how to meet the needs of our students.
I left education in the late '80s and became a technology instructor at a rehabilitation center for adults who are blind of visually impaired. I did this for about 4 years and then went back to education as an assistive technology specialist for the Georgia State Department of Education. On this job I traveled around the state of Georgia and conducted assistive technology assessments of students who are blind or visually impaired. I also had the pleasure of training many of the teachers on various technologies and how they could teach them to their students.
In 1999, I started working for the American Foundation for the Blind (AFB). Since then I have learned many more things about technology and have had many opportunities to present on AT at various conferences in the US, Canada, and the UK.
Please don't get me wrong. I'm not telling you all this in an attempt to sound important, but to let you know that I have been very fortunate in my life to have many opportunities to not only use a good deal of technology, but also many opportunities to learn about how others are using AT for educational and employment purposes. That's why I think the good folks at FamilyConnect asked me to be a guest blogger.
There are so many great technologies currently available that it is very difficult to know which one is the right technology tool for your child. I am often asked, "What technology should my child be learning?" I usually ask if their child has had an assistive technology assessment. An AT assessment is designed to provide you and your child's IEP team with recommendations for technology tools that can assist the child in completing educational tasks. The AT assessment is where you want to start in trying to answer that question.
I will be happy to answer questions in this area during the next few weeks. I'm hoping that this will become an ongoing discussion. In my upcoming posts I'll talk about the process of conducting an AT assessment. This will not only cover information about the assessment process, but an introduction to the various types of technology used by people who are blind or visually impaired, and some suggestions on how to teach your child about using technology.
In the meantime, you might want to suggest to your child's teacher that they acquire the AT Assessment book mentioned above. (I know it's a shameless plug, but I promise I won't do it all the time, so come back every week or so to see what we're talking about next.)
LA Times Features Blind High School Runner
by Susan LaVenture on 2/26/2009 6:27:33 PM
High school senior Alyssa Rossi's story was recently featured in the LA Times. Alyssa, blind since birth, is able to fully compete on her high school track team with teamwork by her track mates. Teammates take turns being a sighted guide by tying a belt connected to the waists. This is just one example of a technique for blind athletes to participate in track. More techniques can be found in an article on AFB's web site, Tips for Runners with Visual Impairments, such as guidence for giving verbal direction, instructions for sighted guides, and running with a tether.
It's important for blind or visually impaired youth and young adults to have the option to compete in athletics and to be recreationally active rather than be discouraged. Oftentimes it takes thinking creatively of how to make accommodations for them to participate. You can also find other ideas in these audio interviews about ways parents can encourage their child's recreational skills.
Let's get some dialogue going on this topic—please share ways your child has been able to participate in recreational activities with your family and friends and competing in sports that the public typically does not foresee.
Sharing Ideas and Questions About Cortical Visual Impairment
by Christine Roman-Lantzy on 2/25/2009 6:27:03 PM
Hello, my name is Christine Roman. I am so honored that AFB and NAPVI asked me to contribute to the FamilyConnect site. It is my pleasure to have the opportunity to share ideas with those of you who have a special interest in cortical visual impairment. My experiences as a teacher of children with visual impairment led me into what has become a passion. In my 17 years as an itinerant vision teacher I had the occasion to work with students who had all types of visual impairment or blindness caused by pathology or injury to their eyes. But I was also lucky enough to be the vision itinerant who served a large residential center for students who had multiple disabilities. It was in this setting that my greatest challenge was born. The classroom special education teachers urged me to explain how I could refuse to work with students who had "normal" eye exams but who acted like they didn't see. In many cases, these cortically blind students seemed more affected than their classmates who did qualify for services because of their cataracts, glaucoma, or other ocular conditions. I did unofficially add them to my caseload but I didn't feel confident about my skills with this unique group of students.
My thoughts of these children who had such confusing vision issues never left me even after I left the public schools to work and study at The University of Pittsburgh. While at Pitt, I also became an O&M Specialist and attained a Master's in Dr. Verna Hart's program for medically fragile infants. I also began working in early intervention programs, at the Western Pennsylvania School for Blind Children, and as an infant developmentalist in the NICU and in NICU Follow-Up at The Western Pennsylvania Hospital. Each of these additional experiences led me to research in CVI that became my Ph.D. dissertation topic. After I left Pitt, I began a teacher-training program in vision at Marshall University Graduate College in West Virginia. Today, I am the Director of Pediatric View at West Penn Hospital and I am the CVI Project Leader at The American Printing House for the Blind. I also am honored to consult with schools, educators, and families.
I look forward to sharing stories about CVI-related topics you are interested in. These topics can include identification/diagnosis, assessment, educational programming, environmental supports, literacy, or service delivery. I am anxious to begin our discussions.
Exploring Foreign Languages with Braille
by Susan LaVenture on 2/18/2009 5:24:17 PM
I recently came across this interesting article written by a dad in Los Angeles, Eric Vasiliauskas, who wanted to share his Lithuanian culture with his blind son: "Enriching Your Blind Child's Life via Foreign Language Braille". Literacy and braille are so very important and this site brings into focus how families can bring foreign language into braille for their children.
What do you think, have you tried introducing your child to a foreign language in braille? I would love to hear about your experiences.
By the way, I just learned that AFB's Braille Bug® site has added a good introductory article about foreign language braille, as well articles about music braille and the Nemeth code, which is used for math.
Making Decisions and Keeping Track
by Cay Holbrook on 1/29/2009 1:50:41 PM
Hi again everyone!
I thought maybe this week I would discuss the issue of making literacy decisions throughout your child's educational life. I think that the people who visit this Family Connect website are at various levels in their journey. Some of you will have preschool children and will just be beginning to find information that you need. Others of you will be "seasoned experts" with older children and years under your belt. Still other families are here because their child may have experienced a decrease in visual acuity or ability recently, regardless of their age.
One important issue for parents is the decision about their child's reading media. Some people consider this a decision between two options: print OR braille. I'd like to challenge that assumption and give you another way of thinking about this decision. I'd like to give you some things to think about as you consider decisions related to your child's reading media:
1. As I mentioned in the previous post, I like to think of a child's "literacy toolbox" as big, open, and flexible. Our goal should be to fill the child's toolbox with as many tools as appropriate so that as your child grows, he or she will have many ways to gather information and can choose the best tool to use for the task. Have you ever heard the old saying "If all you have is a hammer, all you see are nails"? We want children to grow with many options for gathering and conveying information including possibly print, braille, large print, print accessed with the use of optical devices, auditory books, live readers, use of slate and stylus, use of computers...the list goes on and on!
2. I believe that the decision to focus on braille or print or a combination of braille and print in initial reading and writing instruction should be based on specific information about your child, not on a philosophical stance or attitudes. PRINT and BRAILLE are equal in value, anything that can be represented in print can be represented in braille; please remember that this is a decision that empowers your child! Looking at your child's unique characteristics is the best way to make good decisions.
3. I believe that your voice, your thoughts, your opinions are critical in this decision. There are creative, experienced professionals who can provide you with their thoughts and opinions based on their (often extensive) experience and these opinions can be incredibly valuable, but ultimately, you are the expert on your child. Sometimes the decision about reading media is complex and having several different perspectives can strengthen the decision-making process.
4. Please don't forget that decisions about the tools in your child's literacy toolbox should be revisited often (at least once a year) with two things in mind--how is your child progressing in the current medium and are there literacy tools that should be added to your child's toolbox?
So, those are my quick thoughts on this Thursday morning. Next week, let's talk about literacy INSTRUCTION! That will be fun!
Falling in Love with Braille
by Cay Holbrook on 1/20/2009 5:14:26 PM
Hello everyone! Happy New Year! I'm Cay Holbrook. I am thrilled to be connecting with you this month and hope that we can have some very interesting discussions and learn from each other.
First I will tell you a little bit about myself. When I was an undergraduate student at Florida State University, I happened to know a fellow student who was in the program to prepare teachers of students with visual impairments. I went over to his house one Sunday afternoon and he was completing his braille homework and I started looking at the Perkins braillerwriter and his textbook. It was love at first sight! I was so intrigued with those six dots and I spent hours pouring over Louis Braille's ingenious code! In fact, my friend was very happy because he was able to go in the other room and watch a football game while I monopolized his braillewriter!
I became a teacher of students with visual impairments and worked directly with children (mostly elementary aged) in Florida, South Carolina and Georgia. Then, I realized that I had a passion for "spreading the word" to other people who were interested in teaching children with visual impairments and so, I went back to school and completed graduate work, eventually a Ph.D. Since that time, I have been preparing teachers in Baltimore, Maryland (at Johns Hopkins University), in Little Rock, Arkansas (at The University of Arkansas at Little Rock) and currently at The University of British Columbia in Vancouver, BC, Canada!
Without question, I would say that my most powerful memories in my work have been my connections with children and their families. I am so grateful when parents invite me to join them in their journey and I appreciate how much I learn from these families. I have been fortunate to have had many opportunities to step far away from the "ivory tower" of university life as teachers, parents and student generously include me in their lives.
I'd love to hear your stories!
I am interested in everything concerning children and youth with visual impairments! How is that for an open door for discussion? But, I am most interested in the development of literacy skills. This includes the development of reading and writing in print, braille, a combination of print and braille and other methods of accessing information in our world! During the next few weeks we will mainly focus on literacy, but I am happy to address other topics as well.
Editor's note: Dr. Holbrook is also the author and editor of many books and articles, which are available in the AFB bookstore.
American Idol Contestant Scott MacIntyre Heads to Hollywood
by Susan LaVenture on 1/14/2009 4:05:35 PM
Last night after work, I came home, cooked dinner, and watched TV with my son and his girlfriend. One of the benefits of having kids or young adults around is that they keep us young and up to date with the latest music, TV shows, and movies!
My son selected to watch American Idol, so of course I joined them. The show is quite fun to watch, and an extra bonus was that one of the contestants for the show was Scott MacIntyre, a young man who is a singer/songwriter who happens to be visually impaired. All four judges voted "yes" that Scott would move on to the next audition round, which will be held in Hollywood.
His story made top news on the Internet and newspapers—the public still seems to take it as a surprise when someone who is blind can be talented or have some great achievement, like they are some sort of superhero or heroine. Although I'm glad for Scott or any other blind person who makes the news or gains fame; it is a good thing to educate the public that blind people can and do accomplish things.
As a parent of a visually impaired child, that's another hat that we inherit—public awareness and education about people who are blind or visually impaired becomes part of our everyday life. Whether we're at the grocery store or going to the movies, oftentimes we need to answer bystanders' questions about blindness. I would love to hear some stories from you—how have you handled the public?
Practicing Social Skills During the Holiday Season
by Sharon Sacks on 12/17/2008 11:00:45 PM
Hello, and happy holidays to all. My name is Dr. Sharon Sacks. I have worked in the field of education for students with visual impairments for over thirty years as a teacher of students with visual impairments, a university professor in teacher preparation for students with visual impairments and students with multiple disabilities, a school administrator, and a researcher.
Because of my own personal experiences as a person with a visual impairment, I am passionate about working with children, their teachers, and families on the acquisition of socially competent behavior. This vital area of the Expanded Core Curriculum is the key to developing friendships with peers, learning to interact with adults and others in the community, improving self-advocacy skills to make appropriate decisions, and even getting and maintaining a job as a teen or young adult.
The holidays are a perfect time for families and friends to gather together. Children with visual impairments should be expected to be part of all of the excitement and fun of the holiday season. Providing your child with opportunities to experience all the sounds, smells, tactile, and visual images of the holidays allows your child to share memories with others.
For example, giving your child opportunities to cook and bake special recipes, shop for a special gift for a friend or relative, or attend a holiday movie or show helps students to feel capable and reach beyond themselves. Also, the holiday season allows children who are blind or with low vision to practice their manners at family meals, social greetings when visiting others, and expand their ability to engage in meaningful and age-appropriate conversations.
Finally, I believe strongly that being a socially competent person means giving to others who are less fortunate. Think about having your child purchase a canned good or a toy for another person. I hope as you listen and read my interview about social skills instruction, you will use many of the ideas and strategies with your child while enjoying the beauty and joy of these winter holidays.
What Toy to Buy for My Visually Impaired Kid?
by Scott Truax on 11/17/2008 5:32:14 PM
Greetings to all. I am very pleased to introduce this month's expert who will write about a subject that I know is important to many families at this time of year. Emily Coleman is the mother of Eddie and is assisting us by sharing her expertise on the subject of play and toys.
With the holiday season upon us this topic is on the minds of many families. I invite you to not only read the blog but also to actively participate by adding what has worked for you. I would love to see examples of games that are accessible for children and teens. Ideas for homemade as well as purchased toys would be an excellent addition in these troubled economic times. If you would like us to post a picture of your favorite toy please e-mail it to us at firstname.lastname@example.org.
The FamilyConnect web site has a wonderful resource in our Toy Guide as well as articles for families of infants and toddlers such as Choosing Toys and Creating a Play Area for Your Child and Teaching Your Baby to Play with Toys.
By Emily Coleman
Right before a birthday or the holidays, I wander through discount stores wondering what would be the perfect toy for my visually impaired son. Let me tell you, he is one kid that is hard to impress. Most toys keep his attention only long enough for him to throw them out of his way.
So, I keep my eyes open for toys he'd enjoy while I also try to pick the ones that serve a secret purpose. You may wonder how a toy could have a "secret purpose" but some of them do. The ones I look for are fun to play with and also meet educational or therapeutic goals, teach him what real-life objects are, or simply help him play with other kids.
Therapists and teachers love it when you buy a toy to meet one of their goals. When Eddie was an infant, or when he wasn't able to manipulate toys well, I purchased a lot of "cause and effect" toys. You know, you hit a button and it sings, or you shake it and it rattles, etc, etc. He loved those simple toys and quickly grasped the concept of "cause and effect."
Now he is a toddler and although he likes the easy toys, I have higher expectations. So, I buy toys that do multiple things and that also motivate him to activate them. For example, he has a shape sorter that also has beads that rattle when you shake it, and when you drop the shapes in, they make a funny noise. So, there is a motivator for him to fit a shape into the right hole, because the funny noise makes him laugh. He is then having fun, learning shapes, and working on fine motor skills.
Finding educational toys isn't too hard, but finding "real-life" objects that he likes to play with can be tricky. My son loves music and therefore most of his toys have a musical component. I wanted to get him a toy instrument of some kind last Christmas and I looked at the toy keyboards. Like most toys, they have that "dinky" electronic toy sound that drives us crazy. So, instead I looked at real keyboards at the discount store. He is three, so I'm not going to buy him an expensive keyboard from the music shop, but for twenty dollars I could get him a keyboard with a good range of keys, buttons that played different beats, and a tonal quality that wouldn't make me cringe every time he played with it.
Another simple example of a "real-life" object is a book. He gets braille books for every holiday and although he doesn't read yet, he is still learning what books are and that they are important. While shopping, any time I can substitute a "real" object for a toy, I get the real thing.
My final "secret purpose" for a toy is to help my son gain social skills. Basically, he needs to have some of the same toys that all little boys do to interact with peers. One thing most boys like to do is play with cars and trucks. Well, they don't make much noise and my son can't see them zooming across the floor so he could care less about them. Therefore, I seek out vehicles that do more than just "zoom." I've found him a bus that sings when pushed, a dump truck with all the right sounds, and a train that sings and toots its horn. Sure enough, we recently had a sighted child his age over and they pushed those vehicles back and forth across the floor and both kids enjoyed it.
Other good toys that draw kids to my son are balls that make any noise; like jingling, beeps, or funny "dog toy" noises. Again, they'll roll it back and forth and because of the noise, my son can go after it too when it rolls away.
I have one more piece of advice when wrapping those toys this holiday season. Be sure to take them out of the packaging before you wrap them! Isn't it better to have the final result of all that unwrapping be a toy and not a package? It can take me quite a while to get toys out of the packaging these days so I don't want him waiting while I find the essentials to access the toy(i.e. scissors, screwdriver, jackhammer).
Finally, even though these "toy goals" are great to use, it is also fun to buy something just because your child will like it even if that is the only purpose it serves; so don't be afraid to do that either. We'd love to hear from parents with toy suggestions for kids of all ages. Please post your favorite toy and where you can find it or your favorite place to shop. Also, if you made a creative toy for your child, we'd love to know how you did it. I'm always looking for new ideas so please share your great insights with the rest of us.
Parent of a Child with Cortical Visual Impairment Speaks Out
by Susan LaVenture on 10/30/2008 9:32:00 AM
As I'm out meeting with families in different parts of the country, common issues always arise in regards to children who are blind and visually impaired. So from time to time I am going to invite guest bloggers who are living these issues to express what their experiences have been. I hope that "A Parent's Voice" can be a forum where we can all interact with each other.
The first guest blogger, a mother from Connecticut, is Bernadette Jackel. Her son is seventeen years old, and has cortical visual impairment (CVI). Many families that have kids with CVI find that it can be complicated; often times the services providers themselves don't fully understand the impact the visual impairment has on the child's learning. A child with CVI often has so many complicated issues that frequently the vision impairment is ignored, and a parent needs to be the advocate to make sure that their child is receiving the treatments and rehabilitation services that will allow him to learn.
by Bernadette Jackel
Cortical/Cerebral Visual Impairment is the fastest growing diagnosis of visual impairment today, and yet there are still many medical and education professionals that don't understand the implications CVI has on learning and functioning in a visual world.
When my son was born 17 years ago, there was not very much information available on CVI nor was it easy to access that information since the Internet had not yet been designed. We had to muddle through as best we could, taking his vision into consideration at every turn.
My son experienced difficulties with visually guided movement so he walked later than his peers. Once he was walking, he tripped over curbs, walked off stairs as though they were flat, hung on for dear life in crowded environments, was not able to see in noisy environments, had a difficult time orienting himself in space, and often confused other people for me. He also experienced his vision being there one moment and not being there the next. He needed everything he was looking at explained to him so he understood what he was seeing.
When my son began school, we found that the staff had no knowledge of CVI. They couldn't understand that this cute, blond-haired, green-eyed, lovable, friendly, outgoing, funny, ambulatory, speaking 5-year-old who didn't "look blind" and "seemed to see" could possibly have Cortical Visual Impairment. The TVI did not know how to teach the staff how to teach a child she didn't know how to teach herself.
So, it was decided that his visual impairment would not be considered a "true" visual impairment but instead a learning disability and later an intellectual disability. After all, his acuity is measured at 20/80 and he could see the primer print. But it took him a really long time to focus on each word because he lacked saccades. He didn't see the middle of each word because he had a central scotoma. He didn't understand the pictures on the page because there wasn't enough contrast. He couldn't pick out one object on the page because the page was too crowded to see more than one thing at a time.
He had difficulty in math because he was unable to see all the objects he was supposed to count. For example, he would only see three items yet he was told there were five in front of him.
The playground became another area that was difficult for him. He couldn't play ball because he didn't see the ball coming at him. He couldn't run around with his peers because he so often had to stop to feel surface changes with his foot for his own safety.
He also had difficulty identifying classmates by sight, sustaining visual attention for long periods of time, seeing in the distance, and difficulty with extraneous auditory stimuli.
Again, although these difficulties were well documented and he had a diagnosis of CVI, it was decided that he chose not to see, that his visual fluctuation was volitional and his difficulties learning were due to "other issues," not to vision. I often liken his public school experience to refusing to teach a deaf child communication skills and then saying that child has a severe language disorder.
These same difficulties that he had at 1, 2, 3, 4, and 5 years old he still has today. Much of it he has learned to compensate for himself, however, not one of the above-mentioned issues have resolved, gone away, been cured. Because of our diligence and his own perseverance, he certainly understands the world better now than he did when his CVI was considered to be a learning disability rather than a visual impairment.
We had to go through a due process hearing in order to get him an appropriate education. Once he was given the proper modifications and accommodations from a wonderful staff that understands the learning implications of CVI, both academically and functionally, he began to thrive. Unfortunately he spent seven years not getting these modifications and accommodations.
It is disturbing that these same misunderstandings still exist today among many of our medical and educational professionals. Today there is plenty of information available, but every day I read how children are still experiencing the same difficulties getting the proper services that we did.
Parents are still in search of good information because they are not being given any from their medical professionals. Some parents are having a hard time finding a doctor to give the proper diagnosis although the child clearly has CVI. Certainly children are entering schools where there is no knowledge of CVI, and often these children are experiencing the same difficulties my son did in trying to get an appropriate education.
Regardless of whether a child cannot see due to an ocular issue or a brain issue, the bottom line is that child is not making sense of the visual world. The lack of understanding this leads to many, many difficulties in the child's life, difficulties that can easily be circumvented.
It appears that we are still lacking good strategies for students as they enter into school settings although we are not. Many, if not all, of the same strategies one would use to teach a child who is blind or low vision are very beneficial to the student with CVI. The child's educational environment must also be taken into consideration.
CVI is a real visual impairment and it is a growing diagnosis. CVI needs to come to the forefront of the medical and educational collective mind so children can get the proper diagnosis and the education they deserve. Colleges and universities with TVI programs need to have good, comprehensive classes on CVI so the teachers understand and learn best practices. With all this in place, many of these children will reach their fullest potential and become contributing members of society; otherwise, I fear we will end up with a large population of undereducated, visually impaired people who will be dependent upon society for their livelihoods.
What Will Your Child Be When He or She Grows Up?
by Karen Wolffe on 10/20/2008 1:07:48 PM
In recognition of National Disability Employment Awareness Month, I am pleased to offer up FamilyConnect's second "Ask the Experts" blog post, which focuses on career education. My name is Dr. Karen Wolffe, and I am the director of AFB CareerConnect®, a free online resource that connects young people to visually impaired mentors, and provides families with videos of blind people on the job, success stories, and more.
Career education is critical for preparing children from their infancy to transition from school and childhood dependency to work and adult life. I have joined some of my professional colleagues and recorded responses to a series of relevant questions and those audio interviews are available on FamilyConnect in the Education section. Specifically, I answered the following questions:
I hope you will take a few minutes to listen to my audio interviews or read the transcripts of those interviews. I welcome any questions or comments you might have. The intent of this feature, the "Ask the Experts" blog, is to open up a dialogue between families and experts in fields of interest (if you read last month's blog post you know that parents are included as experts as well as professionals). These blogs are being archived on FamilyConnect so that you may access them for the foreseeable future.
Please let me know if you have any questions about how to encourage your visually impaired child to consider career opportunities...we'll all benefit from an open dialogue, but of course it's always the children who stand to gain the most from our working together on issues of importance. I will happily respond to any comments posted. Thank you for your participation.
"Ask the Experts" Launch on FamilyConnect!
by Susan LaVenture on 9/16/2008 10:31:28 PM
I am very pleased to announce that the FamilyConnect web team has created a new feature on our web site called Ask the Experts. Each month we have invited an expert to write an article on a variety of topics of interest to parents. What makes this feature unique is that the experts have committed to be available to answer your questions, and you can also post comments and interact with other parents about the subject.
Our first featured expert is Steve Morris on the topic of "Planning for the Financial Future of a Child with Multiple Disabilities," as we know it is a big worry for parents—what will happen with my child after I pass away or become disabled and unable to manage? Steve explains some solutions of how parents can plan ahead for their child's future with some very helpful steps for setting up a Special Needs Trust and Life Plan.
I hope you will take advantage and gain new insights by engaging yourselves with the "Ask the Experts" blog. Please tell other parents you know about this new resource, too, by pointing them to www.familyconnect.org/blog.asp?BlogID=2. It's a great way of sharing reliable information that may be difficult to find easily otherwise.
Planning for the Financial Future of a Child with Multiple Disabilities
by Steve Morris on 9/15/2008 4:09:01 PM
If you're worried that your child will not be capable of full employment due to cognitive or other limitations in addition to blindness, you are probably facing a dilemma. Most parents want to provide some kind of financial support for their child after they are gone—whether deceased or disabled themselves—since most government benefit programs such as Supplemental Security Income (SSI), Medicaid, Social Security, etc., are insufficient for providing the quality of life most parents want for their child. So they naturally think about leaving some funds to their child to offset the quality of life deficit that usually exists.
Unfortunately this is where most parents discover a dilemma: any funds above $2,000 left to a child will generally disqualify that child from receiving SSI and Medicaid benefits, the two primary benefits that support our multiply disabled children. So what is a parent to do?
There is a perfectly legal way to leave substantial funds for children with special needs while still maintaining eligibility for the various government benefits so critical to their welfare and quality of life. The now generally accepted way of doing this is to set up a legal device called a "special needs trust" (SNT) which not only allows continued eligibility for government benefits but also provides additional benefits such as added security for the funds, professional money management, and protection of the funds from creditors and lawsuits against the child.
Once such a trust has been established the parent or anyone else (grandparents, siblings, aunts, uncles, etc.) can now leave funds to the trust, which will then make payments for the benefit of the child. The person or company who manages the trust funds (known as the trustee) must have complete discretion to make payment decisions on behalf of the child.
So then, should all parents just establish a SNT for their child, which will then take care of everything? You might be thinking that it can't be that simple and if so, you would be right. There are actually 12 total steps that parents should take (including establishing the SNT).
Why Would We Want a Special Needs Trust for Our Child?
The following are some of the common planning issues and goals that many parents of children with multiple disabilities have:
To provide for lifetime supervision and care since someone else will need to step into the role that most parents fill during their lifetime.
- To maintain all government benefits that provide for basic living expenses (SSI, social security) and coverage for medical care generally with Medicaid.
- To guarantee "supplemental" funds are available so that a meaningful quality of life is maintained.
- To provide for a long-term strategy to safely invest and manage whatever funds are left to the SNT for the life of your child.
- And finally, to avoid the family conflicts that can arise when other children and second families are often involved in the family dynamics.
Now we will look at each of the 12 steps that parents need to focus on to assure that they have comprehensively (through a Life Plan) examined all aspects of their child's future care needs before they can finally establish and then fund their child's SNT.
For those parents who simply want to get an idea of where they stand regarding their existing plans please take the time to review the Life Plan Checklist.
CAVEATS AND DISCLAIMERS:
The information provided here is not intended to be exhaustive on the subject of special needs planning. Entire books have been written on this subject so the objective here is more limited in scope. It is our intention to provide sufficient information so that parents have a general understanding of the main issues involved and then know what steps need to be taken to achieve their goals for their child by creating a Comprehensive Life Plan. Where legal terms and devices are discussed such as special needs trusts, wills, guardianship, etc., it should be understood that this is not intended as specific legal advice and accordingly, each family is always advised to obtain appropriate legal counsel when implementing these elements of a Comprehensive Life Plan for their child with special needs.
FamilyConnect Named a "2008 Outstanding Product" in the iParenting Media Awards
by Susan LaVenture on 8/20/2008 11:24:37 AM
AFB and NAPVI are proud to announce that FamilyConnect has been named a "2008 Outstanding Product" in the iParenting Media Awards. The iParenting Media Award is something parents look for when choosing quality products and resources for their family. It is a real privilege for FamilyConnect to be recognized as a vital resource for parents of visually impaired children. The Awards, overseen by iParenting Media, part of the Disney Internet Group, provide a credible and objective method of determining the best products available on the market for families.
I am proud of the efforts of a web team that has worked hard over the past two years to develop a web site with such high quality and standards. We have only launched as of a few months ago and FamilyConnect is already being recognized as a central resource for families. But I feel that what really makes FamilyConnect unique and outstanding is our parent-to-parent community that is the life behind the product—it is the responses and interaction through the message boards and blogs between parents and your willingness to share your families' stories of successes, trials, and errors that make FamilyConnect such a go-to place.
We want to keep hearing from you—so stay connected! It is important that our parents' community stays engaged and is there to receive new families that will be finding our site for the first time and that have previously been isolated within their local communities.
Oftentimes the local medical and educational services parents come into initial contact with upon their child's diagnosis do not have specialized knowledge about visual impairments or understand its impact on the child and their family. As FamilyConnect continues to expand and grow we will be reaching more and more families that need our support. Keep up the good work and congratulations to everyone involved in making FamilyConnect such a lively and essential resource!
Let the Olympic and Paralympics Games Begin; Beijing Summer 2008
by Susan LaVenture on 8/7/2008 3:41:03 PM
To keep in spirit with the summer Olympics and Paralympics Games, not to be deterred by the news and complaints of over-regulation in China from the local people to those foreigners trying to get visas and the promise for protests—let's not lose our excitement of watching the athletes compete with their fellow mates and countries!
My family and I had the privilege of attending the Paralympics Games in Atlanta in 1996, watching people with disabilities in incredible athletic shape and sportsmanship compete in sports that some may never think about being possible.
A dear friend of ours, Cara Dunne, won the Silver and Bronze in tandem bicycle racing that year. Cara, totally blind since birth from retinoblastoma, a rare form of infant eye cancer, was an amazing human being in all aspects of her life. She grew up and went to Chicago Public Schools, and as a youth got into downhill skiing, winning medals. She then was accepted into and graduated from Harvard University, President of her class, and upon her young adult life after a second bout of cancer got into tandem bike racing which led to her competing and racing in the 1996 Paralympics!
There are many other friends through the years that we've met who are in our "blindness" networks, who are athletes and are connected with some great sports and athletics programs in the United States that support youth and adults who are blind or visually impaired. Such organizations like the United States Association for Blind Athletes (USABA) and the Blind Judo Foundation post their programs, activities, and events on FamilyConnect. Teams from their associations will be heading to Beijing for the Paralympics that will begin after the Olympics.
As parents we need to know not to overprotect or be afraid to let our children who are visually impaired or blind to be involved in sports. I remember Mary Zabelski, Cara's mom, saying when Cara was five years old and wanted to ride a two-wheeler bike for the first time, Mary inwardly felt afraid to let her go, but knew intuitively that the right thing to do was to let her daughter explore and to be physically active, not to hold her back.
Adaptive methods and equipment have been developed for many sports—it's just a matter of getting connected with other associations and athletic networks involved in sports for people with disabilities to find out the resources and information to get involved. You never know what your child may accomplish—let them live their dreams!
Parker Moore, FamilyConnect Youth, Becomes a Star on YouTube!
by Susan LaVenture on 7/28/2008 5:23:43 PM
The talented and confident 11 year old young lady Parker Moore has become a star on YouTube! Parker's video interview that is featured on FamilyConnect has been picked up on YouTube and she has received over 800 hits (and counting) with a five-star rating!
Parker has been blind since birth from a rare eye disease called Optic Nerve Hypoplasia. She is now an energetic and imaginative child who enjoys life to the fullest through her acting on stage, singing, and learning at the Arkansas School for the Blind. Parker's advice to parents in raising their children who are blind is "Don't worry about them, just treat them like normal kids." Bravo to her mom, Shelli Moore, who has provided her with great parenting. I know that your family's story and example will be of great encouragement and hope for those parents and kids who may be struggling at times when coping adjusting to blindness. Please check their story out and share with other families you may know. Also we, at FamilyConnect, would like to hear from you about your family stories. What a great way to show off your kids!
World Ophthalmology Congress Held in Hong Kong
by Susan LaVenture on 7/8/2008 12:30:03 PM
You may have read my post To My Son with Love, letting you know of my son's internship at the University of Hong Kong this summer. Since then, just a few weeks ago, circumstances came together that created a unique opportunity for me to join Alex in Hong Kong where I was asked to speak on a symposium at the World Ophthalmology Congress last week!
The symposium was organized by the Glaucoma Foundation, which supports medical research and patient support and education. The purpose of the symposium was for patients to share their perspectives with the ophthalmologists. I was asked to speak on behalf of the "parents' perspectives" of having a child with a visual impairment. I implored the doctors to recognize the significant role the parent plays in the management and treatment, that it should be a team effort between the physicians and the parents. I shared with the doctors about what parents go through emotionally and how parents benefit from connecting with other parents. That it is critical for parents to understand and be educated about the eye condition and the treatment methods.
The third main point was the importance of understanding the functional implications for a child with a visual impairment and that families need to be connected/referred to early intervention and other rehabilitation services available in their local area, state, and country. Of course I introduced the ophthalomologists to FamilyConnect!
After my presentation my son Alex ran up to me enthusiastically saying that he had run into Dr. Walton—his ophthalmologist who treated his infant eye cancer—out of the crowd of 12,000 ophthalmologists attending the conference! I can imagine Dr. Walton must have been surprised and proud to see Alex, now a 6'4" young man and a medical research intern, whom he once treated as a young child and saved his life and some sight!
Happy Father's Day; Fathers Are Key
by Susan LaVenture on 6/15/2008 8:04:53 AM
Oftentimes mothers are seen as the primary caregiver for children, and even more so when the child has a disability. But it is important for dads to be equal partners with mothers in providing support to their blind child. This Father's Day we acknowledge the important role of fathers and the influence they can have in working with their children to reach their full potential.
Fathers have also played a key role with the development and direction of the National Association for Parents of Children with Visual Impairments (NAPVI) by serving on the national board, leading the development of statewide affiliate parents' associations, and influencing educational and medical policies affecting children on the national level in Washington, DC! Currently NAPVI's President is a father of a visually impaired son living in North Dakota, Doug Halverson. He is a strong advocate and a loving father and NAPVI is fortunate to have him serving on our national board of directors.
As I look at the message boards on FamilyConnect, I most often see moms talking to each other; I encourage more dads to join in the conversation, which will certainly enrich the dialogue. I look forward to hearing your insights.
Happy Father's Day!
Toys Are Tools to Encourage Your Child's Social Interaction through Play
by Susan LaVenture on 6/9/2008 5:06:45 PM
Learning to play and finding ways for your child with visual impairments to socialize with his or her sighted peers can be a unique challenge. Finding toys that your child will find interesting is a great step toward teaching your child to play with others. And a great resource for parents to find toys that encourage playtime for kids with visual impairments is a free booklet, Let's Play; A Guide to Toys for Children with Special Needs. It's also a great guide for you to give to grandparents, family, and friends to select gifts for your child for birthdays and holidays. You can find it at www.familyconnect.org/toyguide.
There are so many different types of toys that have multi-sensory appeal to encourage learning and toys that can encourage interaction with your child's friends. Playtime is an integral part of how all children learn to develop skills and to socialize with their friends, and the same is true for children with visual impairments. We can help them along and have fun at the same time by selecting toys that encourage playtime.
I've noticed there have been a lot of inquiries between parents on the message boards about how to encourage their child's social interaction with friends. We'd love to hear from you—what toys has your child enjoyed playing with friends and family?
To My Son With Love
by Susan LaVenture on 6/4/2008 3:31:22 PM
My son Alex is flying off to Hong Kong today, halfway across the world on his own, to spend the summer doing a medical research internship at the University of Hong Kong! I have never felt such deep and strong feelings of pride as welled up inside me when we had our goodbye hug. My son must have sensed my emotions as he lifted my new sunglasses that covered my tears of pride, and told me "Thank you, Mom, for your love and all that you've done to support me to make this opportunity possible."
As my fellow parent and friend Kevin O'Connor says to parents, you never forget the feelings you have as a parent on "diagnosis day." As I walked away from my son, I remembered clearly diagnosis day, when we discovered Alex had a malignant infant eye cancer, and my deep feelings of grief and devastation. Could I ever have imagined that he would someday become a wonderful intelligent young man, full of adventure, motivated to make a difference in this world?
Alex has just completed his junior year at Cornell University taking pre-med classes, working hard in sciences and math, in particular neuroscience. He will have the opportunity to study under one of the leading neuroscientists in the world, Dr. Behnke, at the University of Hong Kong at the Faculty of Medicine in the Department of Anatomy. I have a strong feeling that this is only the beginning of Alex's accomplishments and he will truly make some inroads towards important discoveries that will make an impact in helping others.
With tears of pride,
Exploring the Blogging World
by Susan LaVenture on 5/16/2008 3:33:23 PM
As a new blogger, it's nice to see others exploring the blogging world, especially moms like myself! Yesterday, a coworker sent me a link to Jen's Little Space, a new blog from Jen O'Neill. Jen is a mother of two beautiful girls, Camille and Olivia, and her family is featured in the video section of FamilyConnect. I think I speak for all of us at AFB and NAPVI when I say it's great to see other families connecting and supporting each other through social media tools like blogs.
While I have enjoyed reading all of Jen's posts, the "On Crickets" entry really hit home. Jen explains that as a sighted parent of a visually impaired child, sometimes we think all people need to see things in order to make sense of what is happening in the world, and yet that is not the case. Sometimes we need to step outside the box to understand. With guidance, support, and of course some love, I know our blind and visually impaired children will find their way through the world—it just may not be the way we envisioned.
Happy Mother's Day to All the Moms of Blind and Visually Impaired Children Out There!
by Susan LaVenture on 5/11/2008 7:08:46 AM
Here's to you! Best wishes to you on Mother's Day as you spend time enjoying your families today. I hope you take the time to think about how much you do for your family to enrich their lives and relax for a moment to pat yourself on the back and smile, saying "yes, I am a wonderful mom."
I have admired and appreciated all of the mothers I have met through the years who are working so hard to make sure their blind and visually impaired children have the love, education, and resources they need to thrive. I feel there is no other love stronger and more enduring than that of a mother for her children. A mother's love is a phenomenon—you are their constant and your motherly instinct knows best. Mothers of children with disabilities are some of the most powerful advocates that the world has seen.
Bravo to you and know that you've made a difference in not only your own families' lives but your enduring motherhood has made an impact and will pave the way for those new families that will follow you!
From another mom of three!
Tom Sullivan Addresses Parents at Preschool Conference
by Susan LaVenture on 5/6/2008 4:47:30 PM
This weekend I enjoyed being with 300 parents and their children with visual impairments with their brothers and sisters at the New England Regional Seminar for Families of Children with Visual Impairments that is held each spring on campus of Perkins School for the Blind in Massachusetts. Most of the parents were attending for the first time with their blind infants wondering how will they cope, what is the future for their child, and what do they need to know as a parent?
One of the most meaningful parts of the conference is the interaction amongst parents with each other through the Parent to Parent Support Groups—parents have the opportunity to meet other parents of children that have the same eye condition. Given that all causes of childhood blindness are rare, most often it is difficult for families to find and meet other families that have a similar experience. Parents for the first time realize they are not alone. It's heartwarming to see new parents who have been devastated by their child's diagnosis actually gain hope by attending the conference and discovering it's not the end of the world to have a child diagnosed as blind.
You could see the tears running down the audience members' faces as Tom Sullivan, actor, singer, author, and producer, gave an inspirational keynote about his life. Tom, who is totally blind due to retinopathy of prematurity (ROP) spoke of the doctor's insensitivity relaying the news to his parents and their reaction to the diagnosis. His mother became suicidal and his father went on a drinking binge. He disclosed how his parents were very overprotective of him and they didn't have expectations as he was growing up. Tom spoke of how he overcame his challenges with his rebellious spirit, and how he further developed his talents and skills to become a very successful person in his many careers with a very productive life of adventure and fun with his wife and two children.
As parents we worry about our children and sometimes overprotect them or do too much for them whether they are blind or not—even more so when we have a child who is blind and/or with special medical considerations. How can we find a balance in raising our kids and not overprotecting them? What's been your experience with this?
Welcome to the New FamilyConnect Community
by Susan LaVenture on 4/29/2008 10:15:05 AM
Welcome everyone to the new FamilyConnect community and to my new blog, "A Parent's Voice"! My voice is as a mother of three children and the executive director of the National Association for Parents of Children with Visual Impairments (NAPVI). I am so excited about this awesome way of communicating with parents from all over the world! I would like this blog to be a place where we can have some conversation on what's new, what are some issues you may be facing and successes you want to share about raising your child with a visual impairment. Something like talk radio—a place where we can discuss topics of interest in everyday life or the big picture with local, regional, national, and international issues as it relates to the education and medical well being of children with visual impairments.
Life has changed dramatically with advances in technology. It's amazing that we now have the ability to have a virtual community with parents of children with rare eye diseases and medical conditions having access to customized information about your child's development, education, and social life. Nearly 20 years ago when my youngest son was born with a rare eye condition, retinoblastoma, we did not have this opportunity and it was very difficult to find other families with similar experiences. Information about rare childhood eye conditions was equally as difficult to find; we needed to search the old fashioned way, trying to get special permission to study in a medical research library.
Ultimately, our family did find ways to meet other families through NAPVI, gaining emotional support and connection to resources. My son Alex is now doing very well—finishing up his junior year at Cornell University with plans for an internship in Hong Kong this summer!
I invite you to become an active member of the FamilyConnect community. Please feel free to access all of the interactive features and share your family's story—we want to hear from you! Please let me know via this new blog: what's important and of interest to you? What are some topics or issues for a fruitful discussion?
Meeting Legendary Stevie Wonder!
by Susan LaVenture on 4/28/2008 12:11:24 PM
I was attending a professional conference in California last month and had a nice surprise by meeting the legendary Stevie Wonder as he was perusing the exhibit hall, just like our friends and kids who are visually impaired. It reminded me of how important the vision community of professionals, parents, and individuals who are blind is, who all work so diligently and passionately to coordinate conferences gathering in the same place to provide a buffet of resources, knowledge, and networking with others where otherwise there would be none. Even for Stevie Wonder, who is famous and probably has the resources for mostly whatever he needs, but was able to be a regular blind guy enjoying and learning and networking with others at this conference. Where else would he have this opportunity in the Mecca of Hollywood entertainment?
I remember my first experience as a parent when my son was newly diagnosed child with a rare infant eye cancer. I desperately needed to connect with other parents and was hungry to learn how my son's visual impairment would impact his development and what I needed to know as a parent to raise him. Thankfully, I met a parent of a child who was deaf-blind in the waiting room of the hospital where my son was undergoing eye surgery, and she told me about how she gained support and information from other experienced parents and experts in the field by attending NAPVI National Conferences. Soon thereafter she accompanied me to venture off to my first NAPVI conference held back in 1989 in Dearborn, Michigan, and guess what? Stevie Wonder's mom was there too! Meeting with Stevie recently reminded me of meeting his mom, and how she too looked to NAPVI for support.
By the way, the conference I attended was the California Transcribers and Educators of the Visually Handicapped (CTEVH). Each year, CAPVI, NAPVI's California affiliate, and NAPVI parents collaborate in our outreach efforts by participating in the most largely attended CA statewide vision conference, the California Transcribers and Educators of the Visually Handicapped (CTEVH). NAPVI and CAPVI parents actively contribute to the conference by presenting parent educational and supportive workshops, representing parents at related professional meetings and by networking with new parents and sharing resources at our exhibit area.