Sunday, March 20, 2005

My Mind Began to Wake Up

In the February 28 Newsweek special issue on autism, there was a fascinating sidebar article about a young woman with autism. As a child, her tested IQ was 24. She was totally unresponsive. Her mother said, "Holding Sue was like holding a sack of potatoes, because you got nothing back."

I cannot imagine.

But one day a therapist introduced Sue to a keyboard, and she says, "As I began to type, my mind began to wake up."

Sue is now 26. She graduated from high school with a 3.98 GPA after taking mostly honors and AP classes. She scored a 1370 on the SAT. She's a junior in college and lives semi-independently. She's not "cured," but with the help of her keyboard she has come an amazing distance. And she's very clear that she is painfully aware of how different she still is from most of the people around her.

Sue has a message that she wants to share: "Tell everyone that nonverbal autistic people are intelligent!"

We met a nonverbal, nonwalking 3-1/2 year old at the park today. His mouth was always open and he drooled a lot. From a distance there was no mistaking that this kid was not typically developing. I talked to his dad, who said that the little boy has a pretty unique condition: chromosome 9b deletion and an additional unrelated translocation. The dad's frustration was that his son's condition is so unique that no one knows what to expect. In a classical sense, this kid looks "retarded." (Oh, how I hate that.) But he understands 2 languages and is very "quick," according to his dad.

One of the biggest blessings of having a child with special needs has been my personal growth in being able to talk to other kids with developmental problems and their parents. It's been a very interesting education. It is so hard not to avoid the difficult conversations. It's easier to turn off the empathy because it hurts so much to feel every parent's pain.

But a lot of that, I've learned, is projected. I don't feel sorry for myself for having a child with Down syndrome and I don't need others to feel sorry for me. (I get angry. I get crushingly depressed. But I don't feel self-pity.) So I know that the pain I feel for other parents with children who have problems is me projecting what I think I would feel in their places. And they might not feel that way at all.

"I have two older girls," the dad at the park said to me today. "I'm OK with it."


trisha said...

I was really rooting for Sue's documentary to win the Oscar.

I still don't know how to approach others moms of kids with autism. I mean, I can so tell the kids are autistic, but I don't want to upset the moms. I make smalltalk, hoping they will open up. I mention my son is autistic, or at least I say he can't talk...but nothing.

Sarahlynn said...

That is hard. Do you think maybe they don't know? Like maybe they're in denial or they don't have a diagnosis yet? Or maybe they just don't know how to talk about it. I didn't know how to talk about Ellie's Down syndrome for a long time. I'm still kind of awkward about it sometimes and end up explaining way too much.

none said...

It took a while to identify what I was feeling around parents with special needs children, because I didn´t feel the same with every parent I came across.

Usually I feel a feeling of kinship and understanding. But with some parents I also feel sadness and helplessness.

I noticed that happens mostly when their child is suffering or is in pain because of health issues. I can´t help wishing that child didn´t have to suffer or be sick.

Or, in the situation where I see another parent of an autistic trying to get his child´s attention and I can just hear the wistfullness in his voice, that says "please, please respond just this once", and the quiet resignation in their voice when the child doesn´t respond.

Perhaps in the second case I´m projecting my feelings for every time son has ignored me or was completely unreachable.

I´m not sure how to act around another parent with a special needs child, so I usually just ask them questions like "Is he going in preschool?" and "So what do the doctors say." and "What do you think?" and let them talk.

Perhaps another projection. I know that I have a great need to talk about things, but few people are interested or willing to listen, so I try to offer that.

franchini said...

I have a nearly 6-year old profoundly autistic non-verbal boy. I also feel angry and depressed some of the time but on the whole I am fine with it. I try to respond positively to questions about his autism, because that's usually how I feel, but most people already have ideas about special needs children and see you as a poor tragic victim, whatever you say, and that's not how I see myself.