FamilyConnect™

For parents of children with visual impairments

A Parent's Voice

Brian McKeever to Make Olympic History

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.

Hands-On Learning Thanks to New Technology

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?

Holiday Ideas for Families

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!

Parents of Blind Children Were Also Affected by the Philippine Typhoons

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 mavenno1@aol.com.

We're on Facebook!

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

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!

It's Time Again for Kids to Go Back to School!

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.

Join Us at the International Family Conference: Families Connecting with Families From Around the US and the World!

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!

Susan LaVenture
NAPVI Executive Director

From Proud Mom of College Graduate

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 mananage 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,

Mom

Happy Mother's Day!

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?

Join Us This May for Healthy Vision Month!

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

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!

Susan

LA Times Features Blind High School Runner

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.

Exploring Foreign Languages with Braille

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.

American Idol Contestant Scott MacIntyre Heads to Hollywood

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?

Parent of a Child with Cortical Visual Impairment Speaks Out

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.

"Ask the Experts" Launch on FamilyConnect!

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.

FamilyConnect Named a "2008 Outstanding Product" in the iParenting Media Awards

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

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!

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

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

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

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

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,

Alex's Mom

Exploring the Blogging World

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!

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!

Sincerely,

From another mom of three!

Tom Sullivan Addresses Parents at Preschool Conference

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

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!

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.