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The Writing Dad
There are lots of great articles out there that detail the specifics of Chris’s training program, and the challenges he faced in preparing for the Ironman. I won’t rehash them here, as this is not a piece about athleticism. What I want to write about instead is Chris’s mission—not just to become an Ironman, but to be an advocate for and inspiration to, all individuals with Down Syndrome.
I realize that in many cases the idea of having special needs or caring for someone with special needs can make other people uncomfortable, and they struggle to know how to help when they want to. I understand that from the outside looking in, special needs can seem like a horrible burden to individuals and families.
“It doesn’t help me if you hide your feelings.”
“I’m not hiding them, I just don’t know how to verbalize them.”
“I get that. I do. But you can’t just not talk about these things. It will eat you up inside.”
“Maybe. But I’m not nearly as scared for Isaac as you are right now. I don’t see surgery as elective. If he needs surgery at some point we will deal with it, but otherwise, for me, worrying while waiting isn’t going to help him.”
Another example of “is it typical behavior for a child?” raised its head when Tim was about fifteen months old. Between having ACC and hypotonia, Tim struggles with sensory issues—in particular, getting enough sensory input to allow him to process the world around him. Seeking this sensory input, Tim discovered that banging his head against the wall was a great source of input—it had a calming effect on him. But, there he was, banging his head against the wall for minutes at a time. We didn’t want to stop him from getting sensory input (if that’s what was happening), but we wanted to make sure he wasn’t banging his head against the wall for other reasons.
As a parent of children with special needs, I think that setbacks are often the most discouraging part of our children’s journeys. We can go for days and weeks and months watching them make progress and believing they have mastered a skill, and during these periods, we begin to convince ourselves that all of the challenges are behind us. But just like Icarus, I tend to fly too high, and allow myself too much complacency. When the setback occurs, I tumble.
