The Zen of Special Needs Parenting, Growing a Girl Into A Tween
By Suzanne Perryman on April 14, 2013
My daughter Zoe will be eleven soon, and the signs are all around me. Like the way she waves me away at school drop off, not looking back as she zooms full speed ahead in her power wheelchair. It was here she used to kiss me goodbye each morning, flinging her arms around my shoulders as I would lean down, brush my lips against her cheek and whisper in her ear “ do your best, make it a great day! ”.
Back-to-school prep was different this year for fifth grade, Zoe wanted a pink and zebra print purse. Her backpack and water bottle holder had to be girly and color coordinated with the magenta color of her wheelchair.
The act of getting ready each morning, now involves Zoe picking her outfit from the weather appropriate choices I lay out for her. Zoe selects a necklace to match -and after we have finished her hair ( I have learned how to make waves with my flattening iron, a faster , less sensory offensive process than blow drying or curling) Zoe turns her head, admiringly, from side to side, her hand on her hip as she puckers up to the mirror, declaring herself “ Cuuute!” .
There are the giggles I hear sometimes, shared between Zoe and her almost teenage, almost typical big sister. Giggles and teasing conversations that now involve words like “ crush “ and “ cute” and the names of the boy bands they follow. Zoe even gets goofy now when I ask her about the boys she has known since kindergarten, the ones that have always made her laugh and been very kind to her. New names pop up sometimes with a smile and an assurance from Zoe that the boy is“ verrry nice.”
At school she is enjoying the challenge of learning multiplication, and the responsibility of finishing her work and printing it from her ipad . Since Zoe took her first steps in her little old lady walker at the age of three, she has exceeded everyone’s expectations, in every aspect of her life. She inspires, makes you laugh and by example , keeps you grounded, reminding you what’s really important in life. Like when she smiles contentedly, though tired and spent, as she talks about playing Monster High board games with her peers that day at recess.
Sometimes there is a sasssy tone to her voice now, like as she sing-songs “ Mom, I’m cold here, duuuuh!” while I reach to wrap her in a towel after her bath. And no, I don’t always correct this sassiness , because after all, these days a little “sass” might be good for a girl with multiple disabilities entering middle school.
I see Zoe studying me more, wanting to learn how to do things for herself. She delights in pouring her own milk before her snack, concentrating on twisting the required lid to the top of her cup and choosing her own pink straw. She leans against the kitchen counter for stability as I stand behind her tipping the bottom of the milk container, her hand shaking as I consider keeping a less heavy, half empty container in the fridge at all times, just to enable this independent task that seems to bring her much pleasure.
Slowly our family dynamic is shifting .. her big sister is spending more time with her tech toys and isn’t interested in Barbies anymore. Zoe misses playing with her, and to fill that gap I am pulling Zoe into the kitchen with me to bake cookies and make pizza dough. We are crafting more , playing Wii golf and bowling, and trying to take more time as a family to share new group activities.
As Zoe finds her place to fit in our growing family, explores new interests and hobbies at home, I have been spending more time with her school working on Zoe’s transition for middle school. There have been IEP meetings and school tours, evaluations and recommendations , all for a girl who on paper, is summarized by the highest class of multiple disabilities, a list of scores, and page after page of goals she works hard to meet.
And I realized yesterday, as I sat with her stack of school papers, that this girl who has
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