FamilyConnect: A Parent's Voice
by Scott Truax
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® Magazine is a free monthly publication that comes to you by e-mail. Register now so you can start receiving it and take a look at the July issue that featured back to school articles.
FamilyConnect has many articles that can help you negotiate the school year:
- Preparing for the first day of public school as a student who is blind or has low vision
- Managing classroom work and homework as a visually impaired student
- Helping your blind child learn how to make friends
- Ideas for adapting P.E. classes and sports for students with visual impairments
- Helping your grade schooler develop literacy skills
- Fun Activities for Teaching Magnifier Use
- Reading and Making Tactile Books with Your Child
Be sure to familiarize yourself with the Expanded Core Curriculum (ECC). The ECC is your guide to making sure that your child has her needs met as a student with a visual impairment. It is important to learn about the elements involved in the expanded core curriculum and make sure that it is being taught and practiced both at school and at home.
by Anne McComiskey
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 had successfully survived his first day at school.
Parents with whom I've worked over the years have expressed the whole gamut of emotions and thoughts as their little person transitioned to a new experience.
"Oh, my gracious! She's going to school! I am going to lose my baby to some stranger!"
"What if they don't understand what she needs—how to help her?"
"What if they don't realize that he is the most spectacular little person on the face of this earth?"
And hardest of all..."What if someone makes fun of him?"
This is scary on so many levels. You've been your child's best specialists for years. For many parents that is the role that defines them. Parents wonder who the boss of their child will be now. "I have the Ph.D. (Parents' History Degree) about my child and I don't want someone who doesn't even know my child's name to tell me how best to help."
The identity of many parents was as Ladybug's mother/father. And now they have the scary yet exciting prospect of figuring out what will define them now.
Transition is a big deal. And we deal with it from the womb to the end of living. Every part of life has to transition from the one before. Right now our little person is transitioning from the routine that we parents set up to the whole new world of SCHOOL. This is a big deal. I've worked with parents over many years who have made discoveries about how to navigate the transition experience. Here are some of their thoughts on Getting Your Child Who Is Blind or Visually Impaired Ready for Preschool. I hope you'll share your own here, as well.
by Scott Truax
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 peripheral field of vision. This article from the McGill University Health Centre has more details about the study, which was published in The Lancet: MUHC researcher unveils novel treatment for a form of childhood blindness.
You can connect with other parents of children who have Leber's Congenital Amaurosis on the FamilyConnect message boards.
by Hillary Welch Kleck
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 you can't imagine regular hours at a children's museum this size, well it's a loud and overwhelming chaotic mess to a child with sensory challenges. I signed us up for a day that my husband could attend, too.
In the past, we had mixed results in finding the best way to prepare Madilyn for a trip like this. If we build it up too much or spring it on her shortly before, she tends to get overly anxious. A successful trip begins with extensive planning that goes way beyond just signing up and putting it on the calendar. For Madilyn, that means giving her a 'play by play' of what to expect from beginning to end. After signing up, BCM e-mailed us a wonderful "Social Story booklet" and "Exhibit Accessibility Guide" to help with planning.
The booklet contained a story of a child visiting the Boston Children's Museum and gave descriptions of what to expect during a visit, including everything from the museum staff to the main exhibits to using the stairs or elevator. It was amazing and so helpful! Madilyn loved hearing about the museum and I know it reduced her anxiety in the days leading up to our trip. The accessibility guide gave a synopsis of each exhibit and highlighted those great for visual learners, audio learners, physically active, and hands-on. We knew instantly which to skip, like the more visual exhibits, and focus on the audio and hands-on activities Madilyn would really enjoy.
Of course, the morning of the visit we were running late. Madilyn started to get a little anxious about what the day would entail. I consciously try to keep as calm as possible because I know rushing Madilyn will only make things worse. The ride into the city took about 45 minutes and Madilyn's anxiety elevated with each passing mile marker. My husband dropped us off near the museum while he parked the car instead of Madilyn getting worn out just from the long walk.
I described the surroundings as we got out of the car—the most interesting being the gigantic 40’ white and red "Hood" brand milk bottle that sits in front. Entering the building, it was quiet and the staff was exceptionally friendly as it took a little coaxing to get Madilyn to let them stamp her hand. The halls were mostly empty but you could hear kids laughing as they played in the "Climb" playground area that spanned across the side of the building overlooking the waterfront.
Our first stop was "The Common" which had truly musical chairs. About ten kid-sized colorful chairs formed a semicircle in the room like a rainbow. Madilyn chose the first one she felt and sat down. She first listened intently to figure out where the sound was coming from, then I explained there were other chairs on either side of her. She moved back and forth, sitting for a moment, smiling and listening.
Madilyn conducting a virtual symphony!
From there we explored a few rooms FULL of instruments. Madilyn loves any and every instrument so I though those exhibits would be her favorites. But in the adjoining room was the the winner—a miniature Boston Symphony Hall where she could conduct the Orchestra. "I can be Keith Lockhart, Mommy, and you and Daddy will be the audience!" she exclaimed with pure joy.
The area was set up with a large screen and a Kinect system that allowed her to control the music with an electronic baton, varying the tempo and volume as she waved it around. I watched her stand there without any assistance, in complete happiness and amusement to be conducting the Boston Symphony Orchestra. My heart was the happiest it had been in quite a while but I couldn't help but imagine that some onlookers would think to themselves, "That's sweet and maybe a little sad. She's blind. She'll never have the chance actually be a conductor one day. She just couldn't do it. It just wouldn't work."
But I am her mother. I believe in her and a future which holds unlimited possibilities. I have to give her the opportunity and tools to succeed through experiences, education and constant love. With these, she can do anything. Perhaps one day, my husband and I will be sitting in Symphony Hall as she lives out her dream as the next Keith Lockhart. We'll just have to wait and see.
- Arts and Leisure
by Scott Truax
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 fashion—be it with picnics, family gatherings, or a more peaceful day spent at home. However your day goes, I hope you enjoy some quality family time together. Happy Fourth!
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