This is a picture my son took at Cherry Beach as we sat on a log.
Dogs are drawn to him. Because he's so small, he's afraid they may jump on him and knock him down.
In keeping with our series about courage, I was reminded of an interview I did with Dr. Jacob Towery, a psychiatrist at Stanford who's found cognitive, and other types of therapy, useful for parents of kids with complex disabilities. I just went back and read it and it's so packed with useful, practical information I want to print it out.
Dr. Towery uses techniques that get at common distortions in the way we think that can lead us to feel anxious and depressed. Here's a small excerpt about how we can choose to focus on what our kids can do, instead of what they can't do.
"There's probably a certain amount of sadness that is appropriate and healthy for a parent of a child with multiple challenges," Dr. Towery says. "To know your child will have to struggle more than other children do is unfair. Sometimes parents don't give themselves permission to grieve the loss of the healthy child they expected and therapy can provide the space to experience that sadness. But once you have grieved, continuing to tell yourself 'My child will never do anything' might be an overgeneralization. Is it really true that your child will never do anything? What if we focus on what the child can do? Perhaps the child can make eye contact now, but didn't used to be able to. Maybe your child can smile and generate a smile in you as a parent. Maybe they can give another person a hug and make that person feel good. It's all about what we focus on. We can focus on the 100,000 things that a child can't do, or on some of the things that they can do, and we will feel differently depending on our focus."
My son does all kinds of practical things this year that he couldn't do before (or, at least, we thought he couldn't do them and didn't expect him to). Things like getting into the van on his own and doing up his seatbelt, which is hard for him to reach, doing up buttons (he never wore shirts with buttons due to an aversion), and brushing his teeth (he has an unusually small mouth that makes it hard to get a toothbrush in). The other day he came in really sweaty and hot, and I said "You should change your shirt." And lo and behold, 10 minutes later he came down with a new shirt on. That made me smile because he wouldn't have taken that initiative in the past.
My son is always making progress, but sometimes it's easy to dismiss it because it's not what other people his age do.
Which reminds me of something Dr. BJ Miller told us in an interview. Dr. Miller was a successful Princeton sophomore when he was injured in a prank with some buddies that left him a triple amputee. He's now a palliative care doctor.
When asked what the greatest challenge was in coming to terms with his new life with disability, he said "how to see things differently.
"By pulling me out of my anything-approaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up. I was given a way to let myself off that hook and be my own frame of reference...
"When I talk to school kids they’ll say 'Don’t you miss having two hands?' and I’ll invariably say 'Yea, I do, but don’t you miss having three hands?' Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. 'I don’t sit around missing them anymore than you sit around missing three,' I’ll say. This frame-of-reference issue is a powerful thing."
If we're constantly focused on what our child can't do because of their disability, we can't delight fully in the things they can do.
The other day my son and I went to see my mother, but she wasn't at her condo. We drove over to a nearby park where we found my mother "guerrilla gardening." She no longer has the large gardens that she tended to while we grew up, so she's planted a garden around a log in a nearby park.
My son and I were excited to see her in the distance. I called to her, and my son, who can't speak, also attempted to holler, which made me smile. She was very surprised to see us. When we got up to the garden my son asked in sign what each of the flowers were.
Then a couple of older women my mom knows walked by and said hello. Ben shook hands with them. Then he spontaneously gave each of them a hug. It wasn't what someone his age would have done, but it was heartfelt and heartwarming.
I'm writing this down because so often I slip from focusing on these good and wonderful things. I let my thoughts drift to what can't be. Using Dr. Miller's analogy, it would be like him walking around constantly wishing he had two hands again. Ludicrous, as he said.
Now that we're trying to figure out my son's life post school, I wanted to share a couple of links. Connectability is a website run by Community Living with some great resources for people with developmental disabilities. This one lists all of the day and recreation programs available, at a cost, in Toronto. I know people have very strong opinions about day programs because they are segregated. But we are looking into all opportunities. This is a list of post-secondary options. And this Facebook group Ontario Developmental Services Housing Task Force has families and professionals looking at innovative housing options.
We'd love to run stories from other parents who are looking for courage in the face of a challenge with their child with disability. If interested, please e-mail me at firstname.lastname@example.org