Sunday, September 13, 2009

The inspiring abilities of the disabled...

When your child is disabled, it is very easy to cry over the things you are told that they will probably or possibly never be able to do (and....let's just admit the selfish angle....what you will not be able to do with them). But, just as a disability is not the beginning and end of who a person is -- the loss of what they can't do does not change the value of what they can do.

Sometimes, it's an issue of perspective, even when it comes to a single activity. One of my favorite stories to tell about my son relates to how problem solving skills was one of the only things he did not have a developmental delay in. Back when he was about one and a half, he was getting his preliminary evaluation from Early Intervention. One of the tests that the Developmental Therapist gave him involved a plastic piggy bank toy, through the large slot of which you had to place plastic coins. This was a test of fine motor skills, and at first, the toy was placed so that the slot stretched horizontally, relative to his body. He got that in a few problems at all understanding what to do, or doing it. Since it was clear he had at least that much ability, the DT rotated the toy so that the slot stretched vertically, relative to his body, instead. When it comes to the motor skills needed to align the coin correctly and get it into the slot, it would be harder in this direction. Well, Jamie just looked at the toy. He tilted his head. And then he rotated the toy himself, to the optimal angle for him to put the coins in with the most ease (which was actually friendlier than the original angle, as well). Now see, when it came to the motor skills test, and in a subtler way, the do-what-you're-expected-to-do test, my boy failed that point. On the other hand, what he did was commendable, aside from hilarious, when it comes to the problem-solving skills he already had. Inconvenient -- yeah, a bit -- but commendable. So was his poor performance on that test something negative, or something positive? Well, I don't tell the story because it depresses me!

Still, no one considers themselves to have a special-needs child because of what that child is capable of doing typically or "better"-than-typically. And so, it sometimes helps to remind ourselves of the kinds of things that can be possible, and to remind ourselves to stay open to finding and nurturing them. Thankfully, inspirational stories aren't as hard to come by as it can feel like.

Take Patrick Henry Hughes for example. His could be the story of a young man, severely disabled, in ways of remarkable medical rarity. His could be the story of a family that had so many dreams stripped away as soon as he was born, and did not know how many more they would lose as he grew. In some ways, it is. But, in more important ways, it is not. His is the story of a young man who, despite being born without eyes and unable to fully straighten either his arms or his legs, was a musical prodigy before he was a year old. His is the story of a close-knit, happy family, in which his father works the graveyard shift so that he might sit with his son through every class, and so that Patrick can perform in the University of Louisville Marching Band, as half of a two-person team -- him playing from his wheelchair, while his able-bodied father pushes him through the elaborate routines, in formation with the rest of the group. In fact, Patrick's story, which has inspired a moving music video, involves being a speaker and performer around the country and internationally, winning awards, TV and magazine features, a published book, a released CD , and a fine example of good things happening to good people who need and deserve them. How many people are able to say all that?!

When Ma Li's and Zhai Xiaowei's families dealt with the fact that she was missing an arm and he was missing a leg, do you think they ever expected the two to perform such a stunning dance together? Maybe yes, maybe no....but perhaps they should have. After all, the world is full of such stories that turn "WHY?!" into "WHY NOT?!" I'm not just talking about Fox Network's popular So You Think You Can Dance? program, which gracefully auditioned a blind woman for their 4th season, and a woman with Spinal Thoracic Dysplasia, for their 5th. How about 16 year old Kiera Brinkley, a quadruple amputee who recently performed a dance at Julliard? I begin with these stories of dancers who defy the limitations of their body's movement, because the arts are such a quality-of-life thing, to begin with. Inspiration, however, can be easily found when it comes to many kinds of disabilities and many kinds of triumph...from those related to Cerebral Palsy, to those related to learning disabilities. In fact, if you need some inspiration you can carry with you to places that are, shall we say, technology-handicapped, there's even a Chicken Soup for the Soul book specifically related to special-needs kids!

So, parents, what more can I say? When it comes to our special-needs kids, as, in a way, it does with everyone -- both our kids, and ourselves as parents, deserve to have hopes based on who they are and what they might accomplish with our help and support, not on what they have to work through to get there.

September 4, 10:43 PMNY Special Needs Kids Examiner Leslie O'Donnell

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