I'm sitting with a group of college staff members - thoughtful, open-minded, warm-hearted young people in their first professional positions. They are talking about Richard, a student who is probably on the spectrum. He is finishing a rocky first year at the institution. He's been without a roommate since the first weeks of September. He has struggled in many of his classes. He has made few real connections on campus.
The conversation focuses on preparations for next year and centers on concern about Richard's ability to manage placement with a new roommate.
"Couldn't he have gotten a single room for medical reasons?" someone asks.
"He probably could have, but he didn't request one," someone else answers.
Conversation turns to the reasons why it might be difficult for a new roommate to adjust to life with Richard.
"Richard talks to himself as he walks around campus."
"Actually he switches his voice to a higher pitch and talks back to himself."
"Apparently the high-pitch voice has a name. Suzanne. He talks to her, and she talks back."
On one level, the tone of the conversation is respectful and factual. But I think we are all aware of an undercurrent of incredulity, bemusement, and perhaps pity that is building momentum just beneath the surface.
I'm not sure where the conversation is going and I'm not sure I want to go with it, so I open my mouth.
"When I look at Richard," I say, as heads turn toward me, "I see my son in ten years."
My words are followed by a very thoughtful pause.
I'm reading blogs. There are no new posts on any of my regular reads - the blogs written by parents of children with autism or the blogs written by autistic adults - so I start surfing and I find myself in the world of "mainstream" mom-blogs. I read thought-provoking, insightful prose by mothers whose children are not autistic, are not disabled, are not developmentally delayed.
I am startled to find that so many of these moms seem so much like me.
Then I am startled because I am startled.
I read a post written by a mom looking for support and reassurance. She has a child who is "clingy," who wants to be held, who can only fall asleep in her mother's arms. In this lengthy post, I see flashes of Bud as a baby, Bud as a toddler, myself as a mother. This mom is writing, she says, for reassurance that she is not alone; she wants to know that others have experienced something like this. She's writing, she says, because she is starting to panic, starting to believe that she is not handling this clinginess the "right" way, the way that will be most helpful to her child. She wants to know what other mothers do to get through these moments of panic and self-doubt.
I have a lot to say. I click on "Post a Comment" and the words flow. You are not alone, I say. I have been there, I say. And this. And this. And this. And this, I say.
And then I finish the comment, and I freeze and think:
This mom - this panicky mom - may follow my comment back to my blog. And then she'll discover that Bud is autistic. Bud - the baby who was clingy - the toddler who could not fall asleep unless his arms were wrapped tightly around my neck - the child who reminds me so much of her child - is autistic.
The parts of Bud that remind me of her child are not the parts that pointed to his diagnosis. They are traits shared by many children, autistic and neurotypical alike. I know that. But she may not.
She is looking for reassurance and support - but not, certainly, from mothers like me. She wants to know that she's not alone - but it couldn't possibly help her to know that I am in the seat beside her. She is looking for help. I have nothing to offer.
I delete my comment. I leave nothing in its place.
Sometimes the disablism we confront in the world outside is a lot easier to handle than the disablism we confront in the world within.
Tuesday, May 01, 2007
Inside out: Blogging Against Disablism Day