Last night I asked Emma, “Do you want me to read Anne of Green Gables or something else?” I was seated at the computer responding to a comment left on yesterday’s post. Em was leaning over my shoulder looking at the computer screen. She pointed and said, “Look! There’s Harvey and Tracy and Pascal!”
“Yeah! I’m just finishing up here, Em. Did you brush your teeth?”
“Uh-huh,” she answered. Her one hand gently rested on my shoulder, her head about an inch from mine, she twirled her string and continued to peer at the screen.
“So Em. Should I read Anne of Green Gables?”
“Nah.”
“Oh!” I said, surprised. Turning toward her, I looked at her, “What do you want me to read then?”
“This,” she said pointing to the screen.
“You want me to read the blog to you?”
“Yes,” she said.
I mentally scanned yesterday’s post, suddenly wondering if I’d written anything I would feel badly to have her read or hear. And as I did so, I marveled that this was something I was having to be concerned about. Several years ago, had someone cautioned me to be careful about what I wrote on this blog and gave the reason for their concern as one day my daughter would express an interest in reading it, I would have laughed and assumed the person did not understand my child. The idea that my daughter would be interested in anything I wrote, let alone anything I wrote on a blog about autism was the LAST thing I was worried about. And yet, last night, there I was, and not for the first time, rereading a post I’d written with a critical eye. This says far more about me and my limitations in imagination, as Anne of Green Gables would say, than about my daughter who continues to surprise, astound and prove us wrong.
That my daughter continually “proves us wrong” is something I am working hard to change, because again, this says far more about me and my limited thinking than it does about her. Why should she need to “prove” anything? So many of the various therapies used for Autistic children spend an inordinate amount of time requiring our children to “prove themselves” to us. Often, having done so, we then change the question or the format, suggesting that this is for their own good as they need to “generalize” the information. We ask again, insist that the answer be given within a certain time frame, insist that it be given with specific wording or in a different format, as though their first answer wasn’t enough to convince us. Who exactly is benefitting from these exercises? We say we are doing this with their best interests in mind. We tell ourselves we are “teaching” and this must be done in order for them to learn, but it seems to me, it is often the other way around. It seems to me these exercises are done to convince the skeptics among us.
We do not treat our Autistic population as equals. We do not presume Autistic people are competent, often we believe they are incompetent and ask that they prove to us their competence again and again. We pity them and often their families too. Organizations set on “helping” those who are Autistic discuss their work initiative programs, their mentoring programs, (almost always it is non Autistic people mentoring those who are Autistic) yet fail to see how their well-meaning programs are biased, do not presume the competence of those they suggest they want to help, do not include Autistic people in the planning and implementation of such programs and express shock when their various programs are met with resistance within the very population they say they are helping.
This is really at the crux of the most astonishing thing I’m learning. It is not that my child is limited. It is that I and others like me have been limited in our thinking about her and those like her. It is this, that I hope I will see change in my lifetime.
“Read the blog,” Emma stated as she crawled into bed last night.
And so I did.
Nic and Em ~April, 2013
Emma's Hope Book 