'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!
4 comments:
This has vexed me on and off for years. Or broken my heart. I was just talking to a friend the other day, thinking about how I could start a sort of Big Buddies program for my daughter and a few other special needs teenagers that I know. I was hoping that I could entice some girls into a sort of service project -- pair them with disabled kids to do typical stuff -- you've inspired me to keep at it. Let's wish each other luck!
Good luck, Elizabeth! I'll be your nudge if you'll be mine!
Boy, Carolyn, this is so crucial for our kids. After Adam's accident, they came in masses...then disappeared. An occasional soul would visit, a friend would write and inquire how he was...now, there is nothing. I wish there were people who were not afraid, but we are still looking and waiting. The issue burns at the core. I have no answers, just sympathy and understanding and sharing the pain.
You're right Phil, the issue is fear. Once a person gets to know Daniel or Adam, the fear factor goes down. The trick is finding people willing to take the time.
I like Elizabeth's idea of a Big Buddies program. Daniel went to camp two years in a row and was assigned a buddy. The first year was a college student and things went very, very well.
The following year, they assigned him a high school student who was scared and unprepared. That was Dan's last time at camp because he was not himself when he came home. He was extra tired and I could tell it hadn't been the great experience of the year before.
It's something I really want for him, though. Thanks for the understanding, that means a lot!
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