FamilyConnect: A Parent's Voice
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!
Encourage Your Child’s Independence: Incorporate Orientation and Mobility Skills into Summertime Fun!Posted on 7/2/2014 at 5:33 PM
by Marjie Wood
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 O&M activities for children in their early years and a second article with O&M ideas for the more advanced elementary school and older kids.
These are just a starting point. Let your creativity take you to even more adventures!
If you feel you have to take a nap after reading the suggestions or feel it's overwhelming, the one thing to take away from these articles is to think about involving your child in everyday things you're doing, no matter how small it is.
Who knows? You might find a way to get him or her to help you lighten your own load while providing some time to expand your child's repertoire! Or, the dream that every parent has, your child may start to come up with ideas on her own or even ask to help you!
Be assured, though, having some down time is good for everyone. If you're the organized type and have a weekly schedule, you might want to discuss with your child about an activity and, depending on the age, involve him in the planning ahead of time.
For the older child, encourage her to get information about an event by making phone calls, or using the internet. It's great for children to learn what type of information is needed for the family.
These are just a few examples of activities that would involve your child. Know that the more opportunities you give your child to 'help' you in any way, the more your child will feel good about himself and will gain the self-confidence which is the foundation to gaining greater confidence, skills, and desire to learn and interact more with his environment.
After reading all of this, you're probably wondering how O&M fits into some of these activities. Giving your child more control of the environment through games and activities helps her become more confident in traveling and interacting with new and varied experiences. Orientation and mobility skills and concepts overlap in each area of the Expanded Core Curriculum and therefore, all of the above-mentioned suggestions will enhance your child's ability to interact with the environment and better integrate into society.
These are just a few of the endless activities that summer affords. I do hope that this will start you on the road to a wonderful adventure with your child this summer, in giving your child the opportunity to be in the driver's seat rather than a passenger in life's experiences. Please feel free to share what you've got planned for this summer!
by Hillary Welch Kleck
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 by my frustrations for not knowing how to help her cope.
When she was younger, she didn't know how to tune out the buzzing of lights or dishwasher running in the next room. Handling the hustle and bustle in a crowded restaurant definitely wasn't possible and though I missed eating out, it was of course okay. I understood her anxiety and didn't blame her one bit. But when it came to lost opportunities like socialization at a friend's party or enjoying a kids' concert, it always made me sad. Even a little frustrated. Sometimes a lot frustrated. It wasn't that I didn't understand, but that I didn't know how to help. I wanted her to enjoy life, and play and be happy around others.
Time went on and slowly, I learned how to help her deal with the overwhelming stimulation. I did my own research on the Internet, read books, thought and thought and thought... Therapists implemented sensory integration techniques, and we incorporated even more at home. Things became easier as her communication skills advanced and she began telling me what was wrong. I picked up on signals, too, like when she would hold her shoulder to her ear. It didn't necessarily mean something was too loud, or even that her ear hurt. It simply meant, "No, I don't like this."
It wasn't just hard on Madilyn. It was hard on me, too. I wanted to develop my own friendships and have my fun as a mom of a toddler like all the other moms I saw attending swimming lessons and birthday parties. Some days, not as many as it could have been, but some days I was more overwhelmed with missing out on many of the things I thought being a parent was about, that I overlooked the progress Madilyn was making.
It has taken several years and much trial-and-error, but now she deals with outings pretty well. In fact, these days it's more of a struggle to find enough stimulation for her.
Recently, the reason for failure has been quite the opposite of what it use to be. It is pure boredom that if not recognized in time turns into the overwhelming, crying fit filled to the brim with anxiety. Inaccessible and under-stimulating exhibits (i.e. mostly visual elements) never work—regardless of how many times I say to myself, "This time it will be different."
And unfortunately many children's activities rely on the sense of sight to be enjoyable. Just because it has sound doesn't necessarily mean that it is going to be descriptive and engaging. I have described to her as much as I could every day since she was born. We've presented her with braille, tactile images, textures, audio description on movies and television, description of images and her surroundings, assistive technology, and everything else I could find to enrich her world.
Now, she has began requesting description and asking more detailed questions about what things are, the way things look, how they work, and more. She asks if a new movie she hears advertised on TV has descriptive audio. She asks if a sign I'm reading aloud has braille. She's becoming her own advocate. I'm teaching her to expect these services; and, although the lack of accessibility around her now is frustrating and leads to boredom, fits, and confusion, one day she will stand up for herself and what she needs. And, that's one of the best traits I can bestow upon her, I believe.
Until then, I'll do my best to be everything she needs. I'm her advocate, her teacher, her friend—I'm her mother.
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