Our family spent the night at a water park on Sunday. Cooper comes alive in the water. It is the one and ONLY activity that he enjoys more than watching his movies. He puts his life jacket on and bobs around and swims. It’s pretty dang cute. And he is so independent in the water. That is wonderful to see.
Usually I am the one talking about autism with people. So I was surprised when we sat down in the hot tub and I heard a women talking with Jamie about her son. Jamie sat down, started a conversation and she mentioned that her son was autistic.
I just caught bits and pieces. I supposed I could have leaned over and engaged in the conversation but I didn’t want too. I was content just listening.
Most of the time I am tired of talking about it. I really am. I am always making an appointment, talking to a therapist, or doing research. Multiple times in Cooper’s life I have stopped it all.
The woman had an autistic son. He was somewhat nonverbal. He could do some sign language. He had the cognitive ability of a 5 year old. And on it went.
I heard her say, ” He doesn’t talk but he is polite. And loving. And friendly. And when you get down to it that’s the stuff that matters in life.”
I noticed she was watching Cooper nonstop.
For a split second I was annoyed. Why can’t we just hide from autism once in a while. Don’t we deserve a break?
And then the boy came into the hot tub. Except he wasn’t a boy. He was a man. A 22 year old man. And he was big. I noticed a few signs of special needs. He was moving his fingers and hands in an odd way. Touching his head a lot. Making grunting sounds.
But he smiled at his mom. He was having so much fun.
Now I’ve spent hours, even days, thinking about Cooper’s future. Ask any special needs parent and they will tell you about the constant fear and struggle of knowing that your child might live with you forever. But I cannot picture what it actually looks like. I can’t see it. Maybe my heart won’t allow it.
Right away his mom said to him, “say hi to Cooper.” And he came right over to us.
I couldn’t stop looking at him. I was studying him. Part of me wanted to touch him though for the life of me I don’t know why. He was holding goggles and twisting them around in his hands. He was trying to talk to us but couldn’t. The words wouldn’t come out. His special needs were not hidden. It was obvious.
I couldn’t understand what he was saying and I started to panic. Oddly enough, I don’t panic when I can’t understand Cooper. I just figure it out. But I saw my future in this kid and I needed to understand him. For me I guess. And for him mom. Tears started to well up in my eyes.
I kept listening. And he kept repeating. And putting his hands in some sort of sign language motion.
He was engaging with me. And then, plain as day, he told me what a zebra said. He made the sound and said zebra. And I laughed so loud. Like a belly laugh. And I quickly made the same zebra sound back at him. And he laughed. His eyes were so happy.
And then I started crying. And my stomach started to hurt. I was in the water so it was easy to hide. But I wanted to get away.
I’ve never seen a 22 year old, nonverbal, autistic boy.
Later, I noticed that his mom and dad watched Cooper a lot. That must be a trait of special needs parents. We do a lot of observing.
Right before we left, Cooper wandered over to the boys dad. Jamie followed him and the dad said to Cooper, ‘you must sense that I am one of the good guys.’
The whole drive home I kept replaying the scene in my head. The family was at the water park. They were having a good time. They weren’t sad. At least not that I could see. We were at the water park. We weren’t sad. At least not that people could see.
Cooper is 4. I forget this is a marathon. I’ll be doing it at 22. And 30.
And the one thought that continues to haunt me….’How the hell is the world going to handle when 1 in 40 or 1 in 60 children are in their 20’s? Who is going to take care of them? Where is the support going to come from? How is the workforce going to handle it?’ I think about it constantly.
And what if I die before Cooper is self sufficient? What if he can never take care of himself?