She can do anything!

Ask Aimee is a new advice column on navigating life as a parent with a disabled child.

She can do anything!

Dear Aimee Abled-Mom of Disabled Kid,

I always tell my kid she can do anything she can set her mind to, but this just seems to make her mad. I am trying to inspire her. Can you help?

Inspiring Minds Wanna Know

Dear Inspire,

Telling someone that she can do anything she can set her mind to if she just tried hard enough would be such a wonderful idea if it were true. But the sad thing is that no one can just wish upon a star and have all their dreams come true. Last week we talked about unreal expectations. It’s pretty unfair to teach your kiddo to have them for herself. Let’s take my kiddo, for example.

When she was first diagnosed, I thought the goal was to push for as many services as possible. I went to meeting after meeting after meeting and fought with administrators to get the maximum related services, which in my state at the time was four PT sessions per week and four OT sessions per week.

Our doctors wrote letters to say that more would be better. We began to increase the sessions and add on additional pool therapy here and hippotherapy there, and soon she had a thing every day and sometimes twice a day. Soon she was so tuckered out that she was barely functioning. She was angry she was missing so much classroom time because of all that stinkin’ PT, and she just wanted to come home and kick off her braces and sneakers and play a video game or have a playdate like her sister.

Encouragement is critical. All of our kids need a cheerleader. But false advertising is unfair. My daughter has a neurological disorder and has poor balance, very high tone in her legs, and, among other issues, a great deal of pain in her ankles and feet. She will never run track. But it doesn’t mean she can’t be mobile; it just depends on how we look at it. Let me tell you what I mean.

When she was six, one of her doctors wanted her to have a certain surgery. It’s a common surgery for kids with cerebral palsy, which my child does not have, even though what she does have is sometimes mistaken for it. This doctor wanted her to have this particular surgery so badly, in fact, that she said if she didn’t have it, she’d soon be wheelchair-bound (her phrase, not mine) and that if we didn’t do it, it would be akin to child abuse.

I was enraged. I checked with her neurologist. “That’s a surgery that’s often done on children with cerebral palsy and that’s not what Freyja has.” I knew this but I asked him to explain the difference. “Your daughter’s issue is in her brain, not in her legs, so if she had the surgery, her brain would still not be able to speak to her legs the way we’d want them to. But still. Let’s say it’s successful, and the very long recovery goes well. What’s the point of the surgery, to you?” he asked.

“The physiatrist said she might be able to walk with Lofstrand crutches instead of a walker, or maybe even without anything,” I said.

“But she already walks,” he said.

“I mean independently,” I said.

“But she already walks independently,” he repeated.

“But I mean without anything,” I said.

“But what does that matter?” he said.

“Well,” I said, “I don’t know.”

“You need to be able to answer that.”

I couldn’t. I thought about it for a moment and realized that it really didn’t matter to me if she walked with a walker, with crutches, with canes, or a cane. Or if she used a wheelchair. It didn’t matter to her, so why should it matter to me? I wanted her to be able to use her body in the way that was most freeing rather than be trapped in it. If it meant that she not have an invasive and painful surgery with a six-month recovery period during childhood that might or might not help her walk with an only slightly less restrictive walking aid, and that meant I was guilty of child abuse, then so be it.

When I said so, her neurologist seemed relieved. He reminded me that the point of her many physical therapies was never to increase her strength to the point where she caught up with everybody else but rather to maintain what strength she had and to prevent muscle atrophy where possible so that she could use her body when it helped her not to wear herself out to the point of exhaustion or injury.

Now I know that on her most energetic days, she wears braces from her toes to her knees and uses a walker. On days she needs or wants to conserve energy, she uses her wheelchair. To learn to walk “independently” is as impossible as it is for her to sprout wings, so when people tell her to just keep working hard, I see red.

Since Freyja often has to choose between physical and cognitive exertion and she is perfectly happy to use her wheelchair most of the time, it makes more sense to me that she use her wheelchair as much as she likes so that she can get the most out of her school day academically, socially, and emotionally. She may be no more suited to walking “independently” than she is to flying or I am to singing a capella or joining the chemistry club or playing chess. See what I mean? That has to be okay. And it doesn’t just have to be okay. It is okay. So when people tell my kid now that she can do anything, she tells them sweetly that she can’t, and it’s fine with her. They can’t either. 

Love,

Aimee