The Biggest Disability

Every once in a while, I'm reminded of my son's disability, of the reality of Downs Syndrome.  Most days, he functions so well and so seamlessly in the family, it doesn't get considered.  He's their brother. He's our son.  We go about our day, breakfast, clean up, get dressed, make the list, organize the day.  The kids do their work books or play. We have lunch. The teen goes for a run.  The next teen plans her afternoon on the phone, the girls play a game and the boys pair off and I do whatever work didn't get done earlier.  Until recently, I spent a lot of time writing.

But my son is getting older.  He'll be seven in September, and with that growth, he's become independent, if not safe.  He knows what needs to be done to make a sandwich, to pour a drink, to go outside.  He cannot make himself a sandwich, pour a drink, or go outside without assistance.  But he does not know that.

When we go out to the park, I spend my time worrying about his running, and about how to keep up with him when he will get taller and faster as I get older.  He says "Hi" to everyone on the trail, and wants to go up to every dog.  I worry about him getting bit because he might be too rough with the dog.

While working in the kitchen, he pulled a cooler to me.  I had to tape it shut because he wanted to get in it. Clearing out the room of trash, he called me to come see his bed. He'd placed stuffed animals on it.  "Look." he said, and before I could compliment him on his project, he ran to his sister's room to yell into the fan, and I worried about the fan.

We signed him up for swimming lessons.  Within minutes, he'd escaped the instructor and jumped into deep water, requiring a rescue.  He now wears a life jacket for the lessons, but the lesson I keep learning is be afraid.  Be vigilant.  No matter what.   Because while Paul's independent, he's not safe.

Back when I was just a teacher, I had a student whose mother hovered.  I wish I could apologize to her.  I now understand her fear.  While a teacher, I preached independence, self sufficiency.  I didn't have to live with the random wrong or dangerous choices her son made every day in their home.  The school doesn't have a microwave or a toaster or a bathtub to worry about, and my classroom came with two assistants and multiple locked doors to prevent random running and a high fence around the grounds.

I still want him to become capable, so that he doesn't become safe at the cost of capacity to act, but it is hard. It would be easier to stop pushing him to become more capable, It would be easier to lock him in, lock everything up, and make the world padded for his protection, but only easier until he entered the unpadded world.

Both the mom and the teacher in me knows he needs to be able to act in the unsafe world.  So I took him today for a little run on a trail, his sister, him and me.  He loved it, except for the leaf he threw from the bridge that got caught in a spider's web.  It was supposed to fall into the creek. He felt vexed it didn't, so he threw another one.  That one floated past the web. But the original leaf remained suspended.  Watching the other leaf float down the stream, I noted the better leaf didn't make it to the water. It would have floated splendidly if it hadn't been caught by the sticky part of the web.   The web kept the leaf safe from getting wet, but also kept it from moving on, becoming a boat, and traveling further than it could go by itself with the dull summer breeze.

When we got home, I thought about how afraid I'd become for him, and how dangerous that fear was for him, even in some cases, more dangerous than what I sought to protect him from.  I would trap him as the spider, suspend him from growth while keeping him safe.  So I've written notes to myself on his IEP, because his objectives and goals of self sufficiency and capacity can only be reached if I make some goals and objectives to be met too.

Let him begin to float down the stream.