This guest post is from Kirk Smith, author of the book Rice Krispi’s and Ketchup: A Comedian’s Journey with an Autistic Child.
My son’s name is JJ. JJ is big kid, about six feet tall and over 200 lbs. He is a sweet boy but can only say a few words and can get frustrated when trying to communicate. His frustration can lead to violence, mostly directed at himself. We have tried to teach him to sign, but he can only sign a few things.
JJ is severely autistic. In his school of around 700 autistic kids, he was one of the most severe.
As a man, when you find out you are having a son, you want him to be big and strong. Something primal in you desires him to be a man of physical substance - someone not to be trifled with. Perhaps so that he does not have to relive your playground battles. You know that kid who never had to fight because his hands where the size of cafeteria serving trays? Like him. Not someone like me, who apparently, based on experience, has a face that looks like it needs to be punched. You want him to be a goliath of a man. You want him to be a man’s man. Someone to defend you in old age.
You assume that with that strength, he will have the mind to guide it. He will be able to channel that force to become someone positive. We may be assuming too much. It never occurred to me that my son could be autistic. That he could require almost 24-hour care. But he does.
As he gets bigger, I am concerned for him and what his future holds. As I said, as a man, when you find out you are having a son, you want the best for him. When you find out he has neurological issues, you still want good things for him, but you just want him to be smaller so you can still control him when he gets out of hand. With a regular kid, you want him to be built like a line backer. With an autistic kid, you want him to be built like a referee. A regular kid, you want built like a Viking; an autistic kid, you want built like an IKEA worker. Both are Swedish, but one is into pillaging and the other is into pillows. I guess what I am saying is you are hoping your autistic kid is built not for Ultimate Warrior, but for Ultimate Frisbee.
I won’t lie. I love sports and I had big dreams for him. Dreams that he would surpass my mediocre college sports career. Letting go of the plans and dreams I had for him was hard. If I could tell my younger self anything about this, it would be the following:
Yes your dreams for him are changing…
Dreams of watching him play college sports, gone.
Dreams of watching him walk the line in high school and college, gone.
Dreams of him playing point guard for the Knicks, gone. (Along with the tagging along on his jet, borrowing his convertible Stingray Corvette, front row seats next to Spike Lee, gone, gone and really gone.)
But the dying dreams I once had are just that – mine. They are my dreams, not his. He does not miss what he has not known. He is his own person. He has his own thoughts, desires and motivations. His goals and motivations are not “worse” than mine; they are just different.
I raise my glass to my son, who has taught me much about life:
1. That he is not a vehicle for me to live through
2. To live life for today
3. And lastly, plans, like pants, are overrated.