Blame and Bash (#274)

Charlie’s ABA therapist was sick so, soon as he got off the bus (with the driver’s grandchild asleep in the middle seat), we hurried off to our town pool. The "open family swim hours" end at 4.30pm, after which the swim team has its practice. For the past three years, Charlie and I had been swimming after 7.30pm. Rather than tiring Charlie out so that he went to bed once we got home at 8.30pm, these evening swims only seemed to make Charlie more awake, and I could see how the whole sensual experience of being in the water, the feel and the noise of the splashing, and the long "hot showah" in the locker room could over-stimulate Charlie.
In the past, Charlie often went to bed at 11pm and later after these swims; I considered 10.30pm an "early" bed time for him. As Jim often does not get home until 9pm from the Bronx, and because we have an unwritten rule about not talking about Charlie in his presence, we were rarely able to talk about what was going on with Charlie and with our own lives. Ever since Charlie has started attending his new (and soon-to-be-former) school, we have noted that he seems more tired–due to being more intellectually engaged–and, for the past month, have worked on"bedtime!" at 8 or 8.30pm.

And, Charlie has been going to bed at those times and is usually asleep by 9pm–a phenomenon that, a year ago, I would have considered a miracle. I have time to prepare my classes and read books for my research. And Jim and I have time to talk, about Charlie, about our jobs, about the conference on autism advocacy in religion and education that Jim is organizing (save the date: Friday, October 27th, at Fordham University in New York City).

So I can kind of see why the Families of Adults Afflicted with Asperger’s Syndrome (FAAAS) people have come up with something like the "mirror syndrome" of Cassandra Affective Disorder (CAD). Living with an autistic child can result in a parent being sleep-deprived and also "deprived" of a lot more: social interactions with friends and family, opportunities "just to live a normal life," of career prospects. (Jim and I have both given up job security to ensure that Charlie has the best of what he needs—Jim gave up a tenured full professor endowed chair position at a substantial Midwestern university so we could move back to New Jersey in May 2001 for Charlie.)

And you know what?

Jim and I (now that we have time to talk about it) know that our life is better because of all that we have lived through with Charlie, with autism.

Ballastexistenz commented that FAAAS is "aspie-bashing." It was subsequently noted that those who subscribe to something like Cassandra Affective Disorder (CAD) are blaming autism for a failed relationship–are "scapegoating … the autistic person in the relationship for any difficulties the relationship may have," as Lisa wrote.

I consider aspie-bashing and autism-bashing to be autism-parent bashing, which takes us right back to Bruno Bettelheim and the refrigerator mother "theory" (fallacy is more like it) of autism. Life with autism isn’t easy, has the proverbial "ups and downs," but Jim and I see our shortcomings as our shortcomings. The humbling part of being Charlie’s parents is that you can try so hard, you can love your kid so hard, and you can be–as another special needs child parent wrote about—pretty darn wrong.

The existence of an organization like FAAAS is another symptom of how hard living with autism can be, for autistic persons and those who live with them. What so disturbs me about FAAAS is the pinpointing of autism–of the neurological difference that Charlie was born with–as the root of relationship trouble. I understand that Charlie stims and that Charlie lines up his toys along the lines of the living room’s hardwood floor because of his neurological wiring–because of the brain he was born with. Charlie is and has always been Charlie and he has more than enough to deal with besides being a scapegoat for anyone else’s woes.

Charlie has autism. I don’t.

At the pool this afternoon, we both looked a little different.

A bunch of 4- and 5- year olds were crouched on the bleachers for a group swim lesson. Charlie loitered poolside, checking out the sunbeam shadows and selecting a blue swim noodle (meanwhile, I realized that he had put his swimsuit on backwards). For ten-plus minutes, he stood at the ladder, then walked in a circle, then came back.

"How old are you?" asked a younger boy.

I gave Charlie a tap.

"Ay yearzz old," said Charlie, very softly.

"Whah?" asked the boy.

"Eighttt," I said.

"I have to use the bathroom!" another boy whimpered. No one (Charlie; everyone else) moved.

"I think he needs to use the bathroom?" I said, pointing to the little boy and looking towards the women on the bleachers.

"Oh! Yes. Now you ask," said a woman, hopping up.

Charlie stepped into the water, laughing. He did a lap with his swim noodle and four with me coaxing him on, careful to avoid the massive splashing of the younger kids when told to "kick kick kick!".

Charlie had had a great day at school. He stayed up, yawning, till 8.30pm, waiting for "Daddy home" and wrote his name so nicely on a birthday card for Jim, who had requested no big birthday bash.

I can’t blame him. So many are our quiet celebrations with Charlie day in and day out; who could ask–advocate–for more?

2 Responses to “Blame and Bash (#274)”
  1. gretchen says:

    Happy Birthday Jim!

    I’m glad to know about the conference (not that I’ll be able to attend, but a girl can dream 🙂 And I don’t know if I ever thanked you for the link you left on my post about church… Thanks. Really interesting to know that folks with better minds than mine are thinking about this stuff!

  2. Mothersvox says:

    Great that Jim’s organizing a conference! Please keep us all posted! And happy b-day from our house to yours!

    P.S. So glad for your that Charlie is going to bed earlier. Doesn’t it make a huge difference?

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