developmental disability
An inspirational reminder of the potential of disabled children
Last week marked the end of another successful school year for my children. It’s hard to believe we are already in to our summer vacation. Having my family around 24-7 and enjoying endless warm, sunny days has thrown a bit of a wrinkle into my writing schedule. I can see that I am going to have to be a bit more disciplined in carving out time to write and share.
I do not have hands-on experience with autism, although I advocate endlessly for families who have concerns regarding autism and the possible link to vaccines. It is not a world I live in, but I have many friends who are raising amazing children who have autism or are on the spectrum. A very dear friend and colleague of mine, who lives in Virginia, has been quite an inspiration to me in my work. Her son, Sam, has profound autism. She faces a daily, on-going struggle to raise Sam and develop his full potential. Technology has allowed me to form strong bonds with many people, like Vicky, but does limit my ability to interact with their families and their lives. I have never met Sam, but I know much about him.
One day Sam told his Mother that Hotel California was his favorite song. He had apparently heard it on the radio. After hearing 3-4 more times, he sat down at his piano and played a nearly flawless rendition of the entire song. Whether you are raising a child with disabilities or not, you must watch Sam’s performance…you will be moved by the genius that is within this boy who, in many ways, is locked away from the world.
Here is what Vicky sent me, including a link that will allow you to watch Sam’s moving performance.:
Click here for the Age of Autism story and clips related to Sam’s
outstanding performance before a large noisy crowd at the Autism One
conference in Chicago on Saturday, May 23rd. This was his national
debut and there were at least 500 parents and professionals in the
audience and he was a calm and composed as can be.The link also goes to an essay that I wrote about one of the songs
that Sam sang, U2’s, Sunday Bloody Sunday, a well-known political
protest song. As I expected, this song sent the crowd over the top.
The autism community - especially those of us whose children were just
fine until they got a set of vaccinations - are about as battle-weary
as can be. My essay, titled “How Long Do We Have To Sing This
Song” (a line from the song) reflects that state but it also states
that the vaccine-injured communities are still engaged and will
continue to fight for the basic human right to voluntary, informed
consent based on sound science and not ideology. As I gear up for my
next round of meetings with Federal officials to overhaul the broken
vaccine safety system, just know that Sam’s courage and songs like
Sunday Bloody Sunday are the fuel that keeps me going and renews my
commitment to make sure that the system protects the health of everyone.In case you missed the original piece that got this whole thing going
- here’s the Hotel California link that is referred to in the
introduction.Also, Sam has now been asked to play at two additional national
conferences: National Autism Association, Ft. Lauderdale, FL 11/12-15
and the 4th International National Vaccine Information Center
conference, Reston, VA 10/2-4.And, lastly, he’s been asked to host a monthly radio show on Autism
One radio - he want’s to call it “Jam With Sam”.
My thanks for Sam and Vicky for showing us that we can never underestimate the true potential that lies within our children with special needs and for reminding me why my work is important and necessary. Sam, you are a star!!
Pride in the accomplishments of my disabled daughter
The great joy of being a parent is celebrating your children’s success. Every developmental milestone reached by our babies is carefully recorded in scrapbooks. We save report cards, trophies, ribbons, medals and all the wonderful trinkets our children bring to us for their brilliance in academics, sports, or civic clubs. We share their work with neighbors, grandparents, even subject our friends to our bragging through annual Christmas letters. It is a joy to watch our children succeed.
This is no less of a joy for families raising children who suffer with disabilities. The only difference is that we measure their successes differently, perhaps with baby steps. And our children’s accomplishments just don’t seem all that interesting to the rest of the world. Those who love to hear about a soccer team that won the local championship simply don’t understand my pride in watching Quincy learn a simple gesture that indicates she needs a drink. And how can Quincy mastering a feather switch hold up to the accomplishment of a child who won the local spelling bee? I would argue it holds up better.
By watching Quincy and my other children I have learned that she works 1000 times harder than any other child her age to accomplish the smallest task. She is more patient, more determined, braver and tougher than any 14 year-old who can ride a dirt bike or play soccer. And nothing bothers me more than when someone watches something that Quincy can do, like ski or float in a pool or even smile at a joke, and say “Isn’t that cute?”. She is not a baby and it’s not cute. It’s commendable and wonderful and exciting…it is not simple and cute.
Please understand that the pride of parents who raise disabled children is no less than the pride of the parents of normally functioning kids. We want to share their accomplishments and have others rejoice in their success. But we usually don’t…we sit quietly and listen to others talk about their kids and we say little. Not because we don’t have anything to share, but because we know that unless you walk in our world you probably cannot appreciate what Quincy has overcome. Most people look at her for what she cannot do…we see her for all that she has become. And, in my mind she deserves a gold medal, an induction to a Hall of Fame, a trip to the White House and a full-ride scholarship to an Ivy League school already.
Adaptive skiing and therapeutic recreation
Over the Thanksgiving holiday we skied with Quincy. It was so much fun! Our local mountain got nearly 20″ of powder every night of the four-day holiday. It was skiers paradise and a perfect way to kick off the season!
My husband and I have been trained on how to use a bi-ski and that is what we use with Q. Rob has his Professional Ski Instructors of America (PSIA) Level 1 adaptive certification, so he really does know what he’s doing. The bi-ski (also called a sit-ski) is a device that has a bucket seat attached to two skis with two shorter outrigger skis on the back to keep it balanced. It is operated by a very skilled skier who holds two tether lines and by using those lines can make the ski carve turns to either the right or left.
My role is to assist loading the bi-ski onto the chair lift and then to shadow Rob and Quincy, blocking any stray snowboarder or novice skier who may wander into their path. A collision with another skier is just one of the many hazards we must avoid. Rough, tracked-out conditions can create a bumpy ride and just like with any skier if the bi-ski catches an edge it can tip. It can tip going too slow, it can tip going too fast. I am quite proud to say that we have never, ever dumped Quincy. And that is incredibly important. She places full trust in our abilities and if we fail her it will be very difficult to earn it back. When we trained on the bi-ski we started by using sandbags instead of a child…we dumped plenty of sandbags. Then, we practiced on able-bodied people…it’s always good to experience the equipment first hand so you have a clear understanding of what the ride is like, what is scary, what is fun, etc… We finally began with Q and we’ve been skiing with her on our own for nearly three seasons with a perfect safety record. It’s not to say that Rob and I haven’t suffered through plenty of bumps and bruises…but we suffer them happily for Q. There is no more perfect freedom that being completely independent on the mountain…cruising where we want when we want without anyone’s assistance.
If you ever have the opportunity to volunteer at any therapeutic recreation program, be it skiing or swimming or anything, please try it. There is no better reward than the smile on the face of a child who experiences something they have never done before.
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National Vaccine Information Center (NVIC)
