Tuesday, April 12, 2005

Happy Birthday Mikey!

Yesterday was Mikey's 8th birthday. I can't believe how much he has grown. Thinking about Mikey's birthday got me thinking about the website, Down Syndrome: For New Parents, that grew out of Mikey's birth. The site is the result of what I do for a living, computer programming. I wanted to learn about Down syndrome but I also needed a therapy, a need to do something. The site grew out of that need. I started on GeoCities as a free site with a single page and the answer to a few questions that I had looked up. The site grew bigger and bigger during the first couple of years after Mikey was born. At some point I added a simple forum and then updated it with a more complex forum. I am not sure when or how it happened, but at some point the site reached a critical mass and the forum exploded with parents supporting each other. Strangely enough, this occurred with virtually no help from me.

As Mikey got older, we realized that Mikey was not like typical children with Down syndrome. He could sit and spin a plate endlessly even though he had very poor fine motor control and couldn't even hold a crayon. In fact, Mikey would spin anything and stare at it. We sort of knew that Mikey was autistic although we avoided saying it. When we took him to Johns Hopkins for an evaluation, Doctor Capone told us that Mikey was probably autistic but he wasn't telling us anything that we didn't already know in our hearts.

Once I realized that Down syndrome wasn't going to be Mikey's big disability, I started participating in my own site less and less. At the same time, I had no desire to start an autism web site. Down syndrome is something understandable. We know what causes it, we know what kind of behaviors to expect, we know what the future holds to some extent. But autism is a blank slate. I don't understand autism. I don't understand what is going on inside of Mikey's brain. For example, Mikey will ask me for a sock. Unless I give him a very specific type of sock he will reject it. When I give him the right sock he will sit and shake the sock while staring at it. Why? I don't know. He doesn't smile or laugh while shaking the sock so I guess it doesn't make him happy but it must provide some kind of stimulus that he likes. Sometimes when I am sitting with him on the couch, he will try to remove all the creases from my pants, an impossible task as moving one crease creates another. But he can do this for long periods of time. In other ways he is very typcial; he likes to dance and to watch videos and go for drives in the car.

Mikey is a riddle wrapped in a mystery inside an enigma. He is cute and wonderful and funny and full of love. I don't understand him but I love him more than mere words can say.

2 comments:

Map said...

Happy Birthday, Mikey! :)

Frauke said...

What a beautiful, perfect declaration of love to your son.