Most days my son, who has Down syndrome, functions so well and so seamlessly in the family, I forget to consider it. He’s a kid — a brother, a son. We go about our lives, eat breakfast, clean up, get dressed, make lists. The kids do their workbooks. One teen goes for a run. Another plans her afternoon on the phone. I do whatever it is moms do.
But Paul is getting older. He’ll be 9 this year, and with age, he’s become independent, of course. But not safe. He knows what needs to be done to make a sandwich, pour a drink, and go outside. He cannot do any of these things without assistance, but that part he doesn’t know.
I spend a good deal of time hovering, like a guardian angel or a St. Bernard dog, keeping him out of trouble.
When we go to the park, I spend my time worrying about him straying, and thinking about how I’ll keep up with him when he gets taller and faster and I get older. He says “hi” to everyone on the trail, and wants to go up to every dog. I worry about him getting bitten because he can be too rough.
Being at home scares me too. I have to tape things shut so he won’t get into them. It’s like having a small child, with the energy, strength and ingenuity of a big child.
I don’t want to hover or shelter him too much, so I keep trying to give him opportunities to experience the bigger world. We signed him up for swimming lessons. Within minutes, he’d escaped the instructor and jumped into deep water, requiring a rescue.
The lesson keeps getting reinforced: Be vigilant; he is not safe.
I do want Paul to become capable, so that he doesn’t stay safe at the cost of his capacity to act and interact. It would be easier to stop pushing him, to lock him in, lock everything up, and pad his world for his protection. But one day he has to enter an unpadded, unsafe world, and confront it.
So I recently invited Paul and his sister to take a little run/hike on a trail. He loved it, except for the leaf he threw from a bridge that got caught in a spider’s web. It was supposed to fall into the creek, and he was vexed that it didn’t. So he threw another one. That one floated past the web, while the original leaf remained suspended.
Watching the second leaf float down the stream, I noted that it had been the better leaf that didn’t make it to the water. That first leaf would have floated splendidly if it hadn’t been caught by the web. The web kept that near-perfect leaf from getting wet, but it also kept it from moving on, traveling further than it could go by itself, pushed along by the dull summer breeze.
Parables before my eyes.
When we got home, I thought about how afraid I’d become for Paul, and how dangerous that fear was — in some cases, more dangerous than what I sought to protect him from. I would trap him as the spider, keeping him safe, yes, but suspending him from growth. It was my need for security that held him back.
This morning, his teacher called to talk about Paul moving to a less restrictive environment, a new school with more opportunity for him to become self-sufficient. I felt my own fears rise and remembered the leaf trapped in the web. Here was the opportunity to prove I was more interested in his well-being than my own comfort.
I know when the Holy Spirit is trying to get through to me. “Be not afraid,” Jesus says.
So I’ve written notes to myself for his Individualized Education Program plan to highlight goals and objectives self-sufficiency and I’m looking into this new school.
I must write some for myself, as well, the goal of trust, of not being afraid; the objective being that Paul may have life, and to the full.