Lessons for Typicals: Don’t Help Me Unless I Ask

September 5, 2012 · 4 comments

in The Girl & Cerebral Palsy

friends, cerebral palsy, inclusion, running, races

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).

If you enjoyed this post, download my FREE eBook, There's Sunshine Behind the Cloudsa resource for special needs parents. There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom is for every mother of a child with special needs who is at the beginning of the journey, struggling to gain her footing on ever-shifting sands. It focuses on how to not only survive the emotional roller coaster of special needs parenting, but enjoy the ride.
Jennifer September 5, 2012 at 11:44 am

Somewhat similar to letting them learn from their mistakes. Oh so very hard, but so very necessary. Being a parent is not for the faint of heart!!!

Anne September 5, 2012 at 1:00 pm

Hi – I enjoy your blog. I’m not sure how I found it but as a mother of a special needs child, I like following your journey.

This post brought back so many memories for me of when our daughter was learning to stand up without holding onto anything and walk independently. I clearly remember the confused looks from other people, when I wouldn’t help my child who was clearly laboring to do something. It was difficult not to jump in and ‘help’ her but so worth it now that she can (and does) walk and run independently. There is such a fine line between helping our children and letting them learn based on their own abilities. Our whole family has learned a great deal watching our daughter struggle to learn/accomplish the most basic tasks.

Thanks for your thought provoking posts. I really like reading your blog.

Anne

maggie September 5, 2012 at 1:38 pm

“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.” This is ME to a T! I do this with rachel at the park and i know other people are looking at me like “why aren’t you helping her?? well, it’s because i know she can do it and she doesn’t need help. they seriously have their kids come over to me to tell me that my daughter fell. yeah, i’m sitting right here watching her. is she crying? no. is she bleeding? no. right, she’s fine. let her pick herself up because she’s strong enough.

Amy September 6, 2012 at 12:51 am

I always think that if people could see me with Julia at home, they would think I am a horrible, horrible mother. A few months ago, I decided that Julia needed to crawl from the play room where we get dressed in the morning to the dining room – about 12-15 feet away. She commando crawls using primarily her arms. The first few weeks were horrible screaming matches – she didn’t want to do it, she didn’t want to eat breakfast anyway (and when I called her bluff with a “Fine, I don’t care if you eat breakfast”, she’d scream some more). And after a few months, I don’t even have to ask her to do it anymore. She just does it. The funny thing is, when we went to the conductive ed camp in Virginia last December, I’d see the other moms doing similar things with their kids, and even though I knew it was necessary, my immediate reaction was, “Wow, she’s mean!” It’s the same as a typical kid – they fall when they’re learning, they try to figure things out – it just takes a lot longer and a lot more practice with ours.

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