'Does She Know She's There', was written by the mother of a girl with a severe disability related to cerebral palsy. There are plenty of personal memoirs out there regarding kids with special needs (and I have a bookshelf full), but this one stands out.
Nicola Schaefer was ahead of her time. She gave birth to her daughter Catherine in 1961, about six months before I was born. In those days parents were strongly encouraged to institutionalize their kids with disabilities, and she got that speech along with the advice to go home and have another child right away. I loved her response to that doctor, a deadpanned, "What are my chances of having another dud?"
She kept Catherine at home and raised her alongside the two boys that came later. There were no services available to help her in day to day care back then. Nicola was inventive and optimistic and effected change by connecting with other parents and becoming a disability activist in 1970's Canada.
I wrote her a letter when I finished the book, and got a phone call in return. She's a funny, smart Brit and she inspires me to this day. Currently, her fifty year old daughter lives in a home that she's shared with friends for twenty-five years. There's always a full-time caregiver living with her, often a friend or relative. So much for institutions, this lady showed us all how it's done!
The sentiment in the book that continues to grab my attention the most is the need to create a network of friends for our kids. That's an issue I hadn't thought much (ok anything) about at the time. It resonated with me, even though Daniel was very young. If I don't work at the introductions, his typically developing peers aren't going to know him.
Recently I read another book by another mother, Sharon Dzialo, and it made me think of Nicola and Catherine. Sharon's son was injured in a near drowning accident the year that Daniel was born. Her book, 'Ceramic to Clay', details a lot about the efforts she and her husband Phil make in providing therapies to benefit Adam. She also wrote about her desire for Adam to have a friend (she expresses it beautifully through his voice in the chapter Adam's Ode).
I've been lax in the years since reading 'Does She Know She's There'. I took Daniel to an inclusive Sunday school class with kids his age, and I worked with other moms at his elementary school to be sure his class was included in activities in a similar way. Over time, though, I've gotten lazy.
Sharon's words brought to mind Nicola's and I feel the need to start acting on them. How do I go about it? When Daniel was about 4 years old I asked a neighbor if her son would like to come over to play with Daniel a couple of times a week. (I was trying to follow my mentor's advice.) I was rebuffed and I guess my skin is a little on the thin side, because I never really got over it. It kinda chapped my ass, as they say, but it's time to move on.
At thirteen, the boys in Daniel's peer group can't drive yet. I'm thinking of starting by seeking out guys a good ten years older than him so that he can attend things like football and baseball games. Sort of an older brother scenario. So yes, I'm considering the Big Brothers program. I'm a little hesitant to call them, because I don't know if they've ever served someone with a disability as severe as Daniel's before.
I just don't know a lot of twenty-somethings. Naturally I want to find someone with maturity and an open heart. All I know is that now is the time to begin. I think I'll ask a few of my friends to keep me on my toes by asking how it's going every so often. Accountability always helps when it comes to keeping me moving.
Here's to friends!
