Sarah Kate’s helpers in school have almost always been boys.
The first was her buddy Ben, who was referred to in their kindergarten class as her “guardian angel.” The next year it was Bo, and the year after that she was assisted by Marshall (both in and out of class). In the beginning, I wasn’t quite sure why Sarah Kate seemed to gravitate toward the boys (or was it they to her?). She’s never been into boys in a flirty way, and she has plenty of girl friends.
I was happy that she had boy helpers; I even requested in her IEP at the end of kindergarten that her buddy Ben be placed in her class again in first grade (he wasn’t). In my mind, having a boy helper meant she’d be less likely to be teased or picked on by other boys. Looking back, I’m not sure if that was a reasonable assumption, but that’s what I thought – when I wasn’t wondering how she came to have boy helpers.
But then one day it all became clear.
The girls, with their innate mothering instinct, would do exactly that with Sarah Kate. Mothering would turn into smothering – offers of help when no help was needed. Clinginess that she didn’t like. The girls over-mother, whereas the boys give her the help she needs and no more. The girls stifle her independence; the boys accept it, remaining ready to pinch hit if needed.
People try to help her a lot.
When Sarah Kate falls down, people (most often women) spring into action with, “Oh, honey! Are you okay? Here – let me help you up.” I know they mean well, and when they walk away I’m sure they marvel at what a cold-hearted wretch her mom is for not offering her a hand. But they don’t know what I learned early on – not only does Sarah Kate prefer to do things for herself, but it’s also better for her than being helped.
When she was younger, much of the time when I declined to help her it was because I wanted her to figure out how to do something – it was part and parcel of her therapy. Fall down; find a way to get up. Eventually, she mastered getting up without assistance, though it’s still not and likely never will be as easy for her as it is for me. Sarah Kate also demonstrated early on her willingness to find a workaround when she couldn’t do something – using her arms if her legs wouldn’t do the job – so she didn’t need convincing.
I just needed to stay out of her way.
Even today, now that she’s progressed to the point of walking, standing, and curb-stepping independently (and we’re oh, so close to running!), I still need to stay out of the way and let (expect?) her to do things, even when they’re hard. As much as I’d like for the world to be more disability-friendly, it isn’t. Maybe one day it will be, but I can’t count on that.
Sarah Kate must learn to navigate the world as it IS, not as it may someday (ideally) be.
Want more things that parents of children with cerebral palsy want you to know? Check out Ellen Seidman’s recent piece on Parents.com (with a contribution from yours truly).