FamilyConnect: A Parent's Voice 2014 Archive

December 2014

Happy Accident/Merry Christmas/Happy New Year!

Sometimes the best things that happen are happy unplanned events. We were going to a fundraiser concert that my husband's brass group was playing for. We decided to go to this Christmas Concert because it was afternoon. The next one was evening in a church and I knew by then my crew was not going to sit down and be quiet and listen. Most likely, it won’t make a difference what time of day it is, they won’t sit and be quiet for any length of time. Vinnie hates large crowds and clapping. He does love music. The concert was in a gymnasium full of real Christmas trees and each tree was decorated by a business and they were all lit up. There was

Peppermint Stars Ornaments

Hello everyone and welcome back to Maria’s sensory activities! Here is another one of my very favorite activities especially around the holidays! Remember to include your child to the best of their ability. Use descriptive words such as "soft" for the flour, "grainy" for the salt, "slimy" for the oil, "cold" for the water, "minty" for the smell of peppermint. Allow your child to explore the ingredients. Here's what you'll need: 2 cups plain flour 1 cup salt 1 tbs oil 1 cup cold water 2 drops liquid food coloring (red, green) 6 drops of peppermint oil (I bought mine at GNC) or

Holiday Readiness

It’s that time of year againtime for bells and lights, songs and get-togethers. This is a wonderfully exciting time for us all...and potentially an overwhelming time for our little people who are blind or visually impaired. Here is a hint that might make a chat with someone very special or a visit from Auntie Harriett a little more fun for your kiddo. Readiness is the key. First, it helps to talk with your child about the upcoming visit or experience so he can get a little prepared. Maybe practice some of the activities that will probably happen ahead of time. If a visit to Santa is in your holiday plans, you might gather a fake beard, a velvet hat or even

November 2014

FamilyConnect 2014 Holiday Guide Now Available

It is that time of year again that brings both joy and boundless levels of stress. We have put together a Holiday Guide for Parents of Children Who Are Blind or Visually Impaired that will help you get through the season. Trying to find that perfect gift for your child who is blind? On the Holiday Guide we have collected several articles with tips and specific toy ideas. For that teen or adult you should browse the holiday issue of AFB's

Technology for Children with Visual Impairment

By Felicity Dryer Today we are posting a blog written by Felicity Dryer who is sharing her thoughts on technology. Every parent, particularly those raising a special needs child, wants not just the best, but the very best for their child. With special needs technology advancing at such a rapid pace, the possibility of reaching and applying such progress may very well be possible. What's Out There? Assistive technology (AT) now offers a long list of applications that have

The Disconnect and a New Phrase, "Not Collaborative"

There is such an amazing lack of information or disconnect in the general public regarding vision issues and education. I am always amazed, but I guess I shouldn't be. I find myself educating. Most of the time it is lack of understanding, rather than malice that drives the misunderstanding. It has been a rather interesting beginning to our new homeschool year. For the first time in 3 years (we are beginning our 4th homeschool year with our visually impaired son), we

October 2014

Pathways to Independence for Teens Who Are Visually Impaired

As a celebration of October as National Disability Employment Awareness Month (NDEAM), we have launched a series of articles written for parents about issues in employment and career awareness. In the Transition to Independence section for each age group on the FamilyConnect site, the new articles explain how families can and do contribute to the work to prepare children for employment as adults. As a final salute to NDEAM, we bring you the selections for teens who are blind or have low vision. In

But I Haven't Been to Holland

I would like to introduce Stacey Dodd as a parent who has submitted the following blog. You may follow her on her blog Minding Thomas. I had never heard of the well-known essay 'Welcome to Holland' until it was mentioned to me via a former work colleague upon finding out how my boy was doing. It was suggested for me to read and I honestly didn't bother with it. I ended up coming across the essay through a national support network's booklet, 'Stories to tell.' I read it and I could relate to it for sure. I wondered about that last sentence and how we come to a certain point along this journey where we realize that we have to make a decision as to whether or not we

Celebrating White Cane Day

October is a month of celebration! National Disability Employment Awareness and National Hispanic Heritage Month are two examples, and let’s not forget Halloween.

Paving the Way for Independence

We are pleased to celebrate October as National Disability Employment Awareness month by launching a whole new series of articles designed specifically for parents of children who are blind or visually impaired. Employment is an important topic and it is never too early to discuss it. In the next four weeks we will launch the articles by age range starting today with the babies and toddlers. OK, babies and toddlersisn't it a bit early for a transition and employment focus? My response is that everything that we do lays the foundation for the skills necessary to compete in the employment market. Become aware of what you are currently

FamilyConnect Celebrates National Hispanic Heritage Month

We are right in the middle of National Hispanic Heritage Month, which runs from September 15 to October 15. It is a time to celebrate the history and contributions of this important culture. We would like to take this opportunity to point out that FamilyConnect has translated its articles into Spanish and users of the program may easily switch from English to Spanish in one click of a buttonuse the en español link at the top of any page, or the "Leer este artículo en español" link on individual articles. You can also get started easily with these three downloadable toolkits:

Pumpkin Activities for Children Who Are Blind or Visually Impaired!

We're delighted to have a guest blog post today from Maria Dibernardo. Maria writes, "Hi, my name is Maria. I am the proud mom of my 16-year-old daughter, Jewels, who is totally blind from ROP (retinopathy of prematurity) as she was born at only 23 weeks of gestation. Here are some messy activities that we used to do when she was younger and enjoy sharing them today. Hope you and your family have fun with them, too. Remember they could be adapted to any age group." Carving a Pumpkin Carving a pumpkin is easy and a great sensory activity. Here are the steps: Using two hands, explore the outside of the pumpkin feeling the shape and the

September 2014

Being Organized Helps Prepare Parents of Children Who are Blind or Visually Impaired

Every fall the circus returns. It can become the major focus of many families for years. The entry parade is exciting, noisy, confusing, long, and a little bit scary. As the circus gets underway each act takes the breath away. The jugglers handle too many things all at once, trying not to drop anything. The crazy fire eaters swallow amazing amounts of strange things, the clowns (who aren’t really funny) are distracting, and the elephants incredibly perch on a tiny surface while balancing on only one foot. And all the while the high wire acts have people suspended frighteningly high above and acrobats swinging through the air desperate to catch hold of support. It is all just a little bit crazy and looks out of control. It is fall and our circus is here again.

Sooo, What About School in Summer?

Summer school or no summer school is a hard question. It is an individual decision. Some areas have local schools for the blind that offer a range of recreation, independent living skills development, social opportunities, and skills building opportunities in a short burst of fun in a camp-like setting. Depending on what your child's IEP says regarding summer school, there is usually a short 6 to 8-week shortened summer school program in a less structured environment. There are local bible schools/camps through churches, YMCA or YWCA day camp, camps for special needs children, etc. I have mentioned some of these options before as opportunities for social interaction for home schooled children.

How to Get Assistive Technology for Your Child

Editorial note: With school back in full force, you may be concerned about how the school year will progress. Assistive technology is an important component of your child's accommodations, but sometimes the expense can be a hurdle. We're delighted to welcome Erin Sheldon as a new guest blogger, sharing her story about working with the schools to get her daughter Maggie an iPad. I do workshops for parents on effective advocacy. I compare a parent asking for an iPad to a teenager asking Mom for an iPhone. If your teen comes to you and says, "Mom, I NEED an iPhone!" We all say, "no, you don't, and here

Mixed Emotions Going Back to School

For families it's that time of yearmixed emotions of sadness that the summer vacation time is over, excitement and anticipation of preparation of the new school year, and the anxiety and stress that parents of children with disabilities often encounter. Will my child have the right accommodations needed to make sure his/her textbooks and materials will be accessible? Will there be a

August 2014

It's Back-to-School Time Again: Resources for Parents of Blind Children

Across the nation children are returning to school in large numbers. Alabama leads the nation with a start date of August 5th, but others will follow with almost everyone back by the end of the Labor Day Weekend. This is a good time to remind you of the information available to you through the American Foundation for the Blind and its resources such as FamilyConnect. Technology is a vital component of the skills every child who is blind or visually impaired needs to learn. How do you learn what is new, what is working, and what to avoid? AFB's AccessWorld(r) Magazine is a free monthly

Transition to Preschool Is a Big Deal!

Help your child get ready to jump into a new environment! Once upon a time my whole being surrounded the most wonderful little boy in the world. He was magic and could tap out tickly messages on my tummy. We knew every single thing about one another. And we were totally in love. I knew just what he needed and he grew. Much of that changed in a matter of scary, crazy hours. My angel boy was being pushed from his safe and secure haven with me with kicks and panic. We were in "TRANSITION," they said. "Uncomfortable!" Several hours later he was back in my arms, tired and sleepy and peaceful... He

July 2014

New Research on Leber's Congenital Amaurosis: Drug May Improve Visual Field and Acuity

I recently came across this news article about research into medical treatment for Leber's Congenital Amaurosis (LCA). Leber's is an inherited retinal disease that causes visual impairment ranging from reduced vision to complete blindness. The article reports that an international research project is showing significant progress in restoring vision to patients with LCA. It seems that the retinal cells initially are not dead but instead are dormant, and this medication can "wake" certain cells up, leading in some cases to improved visual function. The study included 14 people, who in some cases reported an increase in visual acuity or in their

A Visit to the Boston Children’s Museum

Madilyn enjoying "musical chairs" at the museum Being new to the area, first on the list of "Things to Do in Boston" was Boston Children's Museum. To plan an outing there with Madilyn though was a job in itself. But thanks to the wonderful people at BCM, our chances for a successful trip were significantly increased though their monthly "Morningstar Access Program.” Each month, families can sign up to attend the museum for a couple hours during which time the museum only allows 100 guests to explore the expansive three-story building full of interactive exhibits. If

Celebrate Independence Day!

What better way to celebrate Independence Day than with a new article written by Anne McComiskey that talks about the path to independence for kids who are visually impaired. I know you and your family will find lots of fun ways to spend the day but I thought this would be a memorable day for the topic. Of course, part of becoming independent is learning how to interact with others, and so we are bundling Anne's poem entitled Manners to round out the day. We hope you enjoy the day in whatever fashionbe it with picnics, family gatherings, or a more peaceful day spent at home. However your day goes, I hope you enjoy some

Encourage Your Child’s Independence: Incorporate Orientation and Mobility Skills into Summertime Fun!

Summer is in full swing and soon we'll be celebrating the 4th of July! Most students are finished with school and everyone is busy with projects and summertime fun. This is a great time for children of all ages to practice the orientation and mobility skills and concepts they've learned, but in a fun way. I have written activities that can be done at any time during the year but summer can provide lots of opportunities for these activities. There are appropriate

June 2014

My Daughter's Challenges with Sensory Stimulation

I have no doubt that my daughter Madilyn learns the most from a multi-sensory experience. With it, she gains true comprehension. Madilyn is completely blind, diagnosed with bilateral anophthalmia, and struggles with sensory stimulation. There was a time not so long ago in which taking Madilyn (now 9) on a trip to the museum wasn't even an option. It's not that we never tried, but prior to 2013 most activities that involved an unfamiliar setting with various noises and voices ended in failure. For our family, failure often looked and sounded like an overwhelming, crying fit fueled

NPR News You Should Know About

Sometimes it seems like it is impossible to keep up in our ever-changing world. Today I have come across two articles on NPR that deal with special education. Both are worth reading. The first involves the very fast-paced world of technology: iPads in Special Ed: What Does the Research Say? Today everywhere you go you see people with iPads. These portable devices are providing amazing opportunities in education and are fast becoming a tool for accessibility, especially for children who are visually impaired, because of built-in features

A Book By and For Dads of Children with Disabilities, in Honor of Father's Day

Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them) It is not often that we see a book written by fathers of special needs children about their experiences. Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them) focuses on fatherhood themes, and was compiled and edited by Gary Dietz, the father of a special needs child. Dietz crafted this book to be shared

Embracing the Fear That Comes With Being the Parent of a Child Who Is Blind

Alyssa at her ski lesson I am the mom of 16-year-old twins, Ryan, who is sighted and Alyssa, who is blind. My children are AWESOME!!! I have friends, looking to adopt, and they have asked for notification of any child who is visually impaired, as they would like the opportunity to adopt him/her. This makes perfect sense to me. Having a child who is blind certainly does add a different element to our liveswe have to talk more, touch more, and choose our vocabulary carefully. We have to be fearless, because our fear will inspire the fear of othersteachers, principals, care providers, and

Socialization: How We Teach Matters as Much as What We Teach!

"If a child cannot learn in the way we teach, we must teach in a way the child can learn." - Dr. O. Ivar Lovaas, UCLA I like planting! I plan what, when, where, and how. I know the who: me. So if my crop fails, it is my fault. Same with my planning school work for the next year. I do it much the way I plan my garden, with a lot of the work done mentally in my head and an awareness of whether conditions are right for what I am planning/planting. Then I peruse my favorite catalogues. I do a lot of mental work before I ever start. I look at what we have done and what do I/we need to do to get to the next level. I am getting to the end of the year. Which means I not only evaluate (not formally, although you could) what we have

May 2014

Mother's Day Craft and Card Ideas for Blind Children

Mother's Day is just around the cornerit's this coming Sunday, May 11. With that in mind, be sure to check out a new article from Emily: How Dads (and Others) Can Help Blind Children Make Mother's Day Cards That Are Meaningful for Mom Here are some additional ideas: Honoring Mother's Day: Paths to Literacy Sensory Art Ideas from

April 2014

Fishing with Lions

You've heard the saying, "A bad day of fishing, is better than a good day at work." But have you ever gone fishing with Lions? As a kid, my dad always promised to take me fishing. I remember going twice. So you can understand my reluctance to take my blind son Bob fishing. If it was left to me, it’d really be the blind leading the blind. In 2004 when Bob was in the 5th grade, his school teacher had gotten a flyer from the Everett Central Lions Club. They wanted blind people to come participate in their Salmon Fishing Derby. He thought it might be kind of fun, so off we went. The blind person is allowed to bring a sighted guide. Everett Central Lions Club The Everett Central Lions

Have You Ever Been to an Easter Egg Hunt for Children Who Are Blind?

Have you been to an Easter Egg hunt for children who are blind or visually impaired? Have you thought about starting one? These events are a wonderful time for the entire family and are also a good place to practice those mobility skills. Here is information for a recent beeping egg event held in Florida, and a search on Google finds many more spread across the country. If you would like to learn how to set up an event in your community

The Big Picture: Planning for the Future

Well, it is snowing again, actually snow, sleet, and freezing rain. The prediction for today is 3 to 6 inches and/or 6 to 12 inches and it is going to last into tomorrow. We live in the border region, the foot hills. A few miles makes a big difference. So, today, I have time to brood/think. No church for us. What is in our future? I do mean "our." My twins will soon be 8. I am 61. Will I be in sufficient health to raise our sons to adulthood? Will Vinnie continue to progress as he is now? Will Brandon's retinopathy of prematurity (ROP) get worse or remain stable? All questions we face each day. I tend to push those to the back of my mind and continue on with our daily routine. Do you

Free Golf Clinics for Children Who Are Blind or Visually Impaired

To reach out to the parents of every blind and or visually impaired child in this country is a dream we have had for many years. The chance to explain to these caring parents that their children can achieve above and beyond their wildest dreams is something that the Middle Atlantic Blind Golf Association has had on their wish list. While we are a golfing organization, our children go far beyond the fairways and greens. We open doors for life using golf as a conduit. In the world of Junior Golf, 2013 has been a

March 2014

My Son's Experience with the Perkins SMART Brailler

I have been asking for the new Perkins SMART Brailler(r), since it first came on the market. The price tag of $2,000.00 is just a little out of my price range. It is not covered by quota funds. The services for the blind, through Catholic Charities in Maine, doesn't even have one to use/try. So we have been slogging along with the electric brailler with me dictating. We have been working on finger positions of the braille cell. Vinnie is now able to write about anything I dictate including correct capitalization and punctuation. I understand that teachers of students with visual impairments (TVIs) do not teach punctuation and capitalization when they begin teaching

February 2014

Age Is Just a Number

I was recently asked some questions about home schooling by a parent, which got me thinking. The concern was repeating the same curriculum 3 years in a row. As I was writing back, I realized that repeating grades and information is common with kids in public school special education programs. This has been true in our own family. We had a young man, in high school, who kept repeating 4th grade math. When he finally wanted to join the home school group, he had just one request. He didn't want to repeat 4th grade math again. Our answer to him was we would test him and find out where he would be placed in the curriculum, and then he would progress from there. He tested at the 4th grade math level, which is where he started. He never repeated it again. After he

Celebrating Low Vision Awareness Month

Low vision devices help this student keep up with classwork. February is Low Vision Awareness Month and we would like to take advantage of that to highlight some of the information we have on the FamilyConnect site that explains just what low vision means. The term low vision has come to describe individuals who have some useful vision that can assist in seeing things like large print and pictures. The scope of who would be considered "low vision" is very broad and can mean many things to different people. It may

January 2014

Three Gifts My Parents Gave Me

Editor's note: Today we are delighted to welcome CareerConnect mentor Dr. Mahadeo A. Sukhai as a guest blogger. Dr. Mahadeo A. Sukhai Growing up in the Caribbean, as a partially sighted child, was an interesting experience I had no appreciation at the time that my childhood was any different from that of my siblings, or that it could have been different from that of any other child. One significant reason for that was that there were, at that time, in the 1980s, no significant

Parents and Family Members are Teachers, Too! Resources From AFB CareerConnect

The fact is, whether your child is being homeschooled or is in public or private education, parents and family members are teachers, too. Teachers in the schools only have so many hours with your child, and the rest of the time they are typically with family. In either case, I have some easy ready-made lessons for you. I am the American Foundation for the Blind's CareerConnect Program Manager. I spend my days working on curriculum, projects, and initiatives specific to the employment of persons who are blind or visually impaired. Of course, I have a strong passion for the transition from school to work. CareerConnect launched a new section about six

Happy Birthday, Louis Braille!

In honor of what would have been Louis Braille's 205th birthday, we asked parents and educators to reflect on the importance of his braille code in their children's lives. Emily Coleman writes about Why Those Dots Are Important to Me Susan Harper, a home-schooling mom and frequent guest blogger, writes about What Braille Means to Our Son and Family Dr. Kay Ferrell, who monitors FamilyConnect's Parents of

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