Tuesday, December 27, 2011

Love and Asperger's Syndrome

There was an article in yesterday's New York Times about love and autism. You can read it here.

This article got me thinking: What does Benjy's future hold, in terms of love and relationships? The young lovers profiled in the article, who are college-age kids, are at once interlocking gears, running interdependently and in sync, and completely dysfunctional. They have similar quirks and a measure of understanding for each other, yet neither can fully give the other what s/he wants.

For example, Kirsten wants physical affection but Jack can't give it to her (remember Temple Grandin's hug machine? I posted a pic in an earlier blog) -- and neither of them can really talk about it. So there are tears and hard feelings, and maybe some feelings of being lost and alone. But ultimately they want to be together. He discourses about chemistry and she actually listens. They are about as close to a match made in heaven as two people on the spectrum can be.

I hope against hope that Ben will find that someone who really listens when he dissertates about his subject du jour. He deserves to find that person, and she (or he?? who knows?) deserves to find Ben.

I am not always that listening person. I am often guilty of tuning out, nodding and saying, uh huh, but not really HEARING him.

When we had some setbacks recently, and Benjy was up half of one night, I failed to be a listener. He told me he thought a bath would help him regulate. It was 3 a.m. and I groaned inwardly: were we headed back to the all-night bath fests, with him fretting away in the tub and me dozing on the closed toilet -- five times, six times, until neither of us could take it any more and sleep claimed us? But I drew him a bath.

He settled into the tub and glanced at my face.

"About the allosaurus," he began, preparing to launch into a discourse on the Jurassic -- or Triassic, or Eocene -- period (I have forgotten which, and Ben is not nearby to set me right) but I put out my hand in a talk-to-the-hand gesture and said, "Stop."

"Benjy," I said, "I can't talk about dinosaurs right now. I have to just sit quietly and close my eyes."

His face fell, but he said, "It's okay. I know you're tired. You can  go to bed now, Mom."

I didn't want to leave him there, but I was going to slip off the toilet if I wasn't careful. So reluctantly I got up and went to bed.

Lars woke up when I pulled the comforter over me. "How is he?"

"I don't know. Can a person fall asleep in the tub and drown?"

"Why did you leave him like that?"

"I'm always the one who gets up. Why don't YOU stay with him?"

"I have to get up so early..."

I lay there, tense, worrying that my boy might drown but too tired to get up. After a while Lars heaved himself out of bed, and when he came back five minutes later, he told me Benjy had gone to his own bed, and was asleep.

I know I don't win this year's Mother of the Year Award. Because this year, like every other year so far, there've been times it's been too much for me, and I have been defeated.

So let's hope there's a soul mate out there who's going to listen when Benjy can't sleep, who's going to sit up with him and maybe bring him a glass of wine and settle in to learn something interesting about the allosaurus.

1 comment:

  1. Alas, my Mother of the Year award will not be given this year, either. Nor has it been bestowed in the past years. In fact, I am sure I won't qualify in the future either. You are doing THE best you can. This stuff is hard. Feeling utterly overwhelmed is sadly the normal in our lives. But, I will point out, for your self-esteem, that whatever is eating you at home, you have been an amazingly generous and kind friend, there to provide us with love and support (and a meal!) during vacation week. Thank you. No one else did. No one even offered. You rock, things will get better, the Joy School will become more real, and Benjy, who like every other kids with his stuff really needs the structure we simply can't provide at home, will get back into the groove of school and do spectacular. I know this because I have faith in him, in you, in the school, and also know it's sometimes two steps forward/one step back. That's okay. Just know we are always here for you, to be part of your village if you want some more company in it.