Tuesday, July 16, 2013

The Simple Math of Autism

It’s simple math, really. And, as with most of my experiences with math, the outcome is kind of sad. The simple math of autism doesn’t work out in my favor and leaves me, as usual, frustrated and searching for answers.

I’ve never been great at math. In grammar school I would have gladly been stuffed in my locker than sit through math class. It is by a small miracle that I got through college without taking a “real” math class (I took “History of Math” and it counted, yeah baby). But there is one equation that I don’t need algebra or calculus to figure out:

My autistic son, Mikey, is now eight years old.
I’m going to be 47. That’s almost 50, folks.
In ten years Mikey will be 18. (Holy *&@*#!)
In ten years I’ll be 57. That’s almost 60, folks.
From that point on the equation gets scarier and scarier: 28 – 67, 38 – 77, 48 - ???.

I’ve always had this information in the back of my mind. It’s not new to me. It’s the sort of thing I think about late at night in bed when all is quiet and dark and I can’t sleep. It joins my other heart-wrenching thoughts: Mikey will probably never go to college, Mikey will probably never drive a car, Mikey will probably never get married, and I’ll probably never be a grandfather.

Now, Mikey isn’t disabled or as severely autistic as some children. But the sheer reality, the simple math, is that my wife and I will, at some point, be unable to take care of him. That isn’t to say we are giving up our battle to help him overcome autism…it is just the truth. And the truth can be either a kick in the stomach that brings you to your knees in defeat or a kick in the pants that spurs you on to action. I’m leaning toward the latter, thank you very much.

These thoughts of Mikey’s future, this earth-shaking equation, was brought to the forefront of my awareness when I attended a meeting of the DDI Family Advocacy and Support Network recently. DDI, the Developmental Disabilities Institute here on Long Island, is an amazing organization. Mikey attended their Young Autism Program in his pre-school years and would be much farther behind in his development without them. They do amazing things to help children and families from the beginning of their autism diagnosis through to, hopefully, moving into a mainstream program in their school district.

But DDI doesn’t just work with school age children. They also serve adults with autism, especially those who need 24-hour care. DDI runs several residences to care for this growing, and often forgotten, segment of the autism epidemic. But, as with many things nowadays, the economy and tight budgets make it increasingly difficult for them to provide service to all of the cases on the waiting list.

I met some amazing people (mostly parents of adult children with autism) at the meeting. To hear their struggles and tear-inducing stories (such as years-long waiting list for their children to get placement) was saddening, but also inspiring. Because Mikey is still a young child, most of my thoughts and advocacy efforts lean toward children with autism, but these strong, determined folks made me vow to widen my focus. I plan on speaking with as many of them as I can, and doing my best to learn from them and write about topics that are important to their families.

I’ll never be good at math, but that doesn’t mean I’ll give up trying to figure out the answers. By focusing on simple addition (me plus my wife equal love for Mikey) and multiplication (I promise to love him twice as much every day) I think I’ll finally get a passing grade in that most challenging of subjects: The simple math of autism.

Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.

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