Thursday, April 05, 2007

Autism Eternity

We've been recuperating today from yesterday's Dementor-induced dementia. Sometimes you just want to wrap your wounds in warm woolens and nestle in, forgetting everything from the day before, forgetting the crazy world of diagnostic ambiguity, and the disturbing implications that your child is "disturbed." You just want to wrap that old hole-y sweater around you and wear big socks and not think too much, since thinking (other people's and your own) is what got you into this jam in the first place.

We will be taking MOM-NOS's advice and getting chocolate, the only known antidote to Dementor-induced dementia, but we couldn't do it today. We would have had to go out for that, and we weren't going anywhere. We were in full-scale retreat. Called back the cavalry. Turned and ran like crazy back to our own little cave with the idea that we will never, ever, ever come back out again. Or at least never-ever go back to any ed-psych evaluator.

While I was curled up in a ball, I heard Sweet M in the other room as she yelled out to her father, "Hey F___ (she calls him by his first name), What's eternity?"

"Ternity?" he asked.

"No, E-ternity," she said.

"Oh, eternity. Hmmh. What's eternity? Well, it's uhmm. Ask your mom, she has a PhD — she oughta know what's eternity."

He might have just said English is her first language and not mine, but whatever.

"Ma-om, ma-om, what's eternity?" she yells to me in the next room.

And so I join her in the living room. She's watching a cartoon, and someone must have said "eternity."

"It's all the time that ever was and all the time that ever will be. It's all the time always."

"Oh. It's a lot of time."

"Yes, a lot of it, all of it, ever."

Lately we've been hearing a lot of questions about time over here. Sweet M is coming into time . . . coming into some idea of time . . . into her understanding of time.

Apparently she is late on this, as on so many other things, and one wishes one had all the time in the world, so that there would be no problem of catching up . . . Or being left behind. One wishes one's child wasn't clocked against the averages of her age group. One wishes one had eternities to help them get where they're going.

That would the the sort of autism every day that would work for us: all the time we need to get her all the help she needs. No developmental windows that are constantly threatening to close forever. No emergencies on the cusp of puberty. No developmental changes among the typically developing that leave her out in the cold. No nine month school calendars that leave her with three months off and no therapy, no services, no assistance at all. An autism eternity — That's the sort of autism every day I need.

5 comments:

MothersVox said...

Last night after I posted this, little M and I were hanging out.

I said, "I don't think we're going to see that doctor again."

"Why?" she asked.

"Well, I didn't like him. Did you?"

"No."

"How come you didn't like him?" I asked.

"He's got *such* bad toys," she said.

At least someone has their priorities around here. Or, as Sweet M says when she's starting something -- "Always start with the basics. . ."

abfh said...

Albert Einstein also had a significant delay in developing an understanding of time. This is what he wrote about that:

"I sometimes ask myself how it came about that I was the one to develop the theory of relativity. The reason, I think, is that a normal adult never stops to think about problems of space and time. These are things which he has thought about as a child. But my intellectual development was retarded, as a result of which I began to wonder about space and time only when I had already grown up."

a mommy said...

eternity: the amount of time you spend waiting outside the door while they discuss how you defended your dissertation.

I think that you will agree.

But it hardly helps with explaining ti to Sweet M, which you did extremely well!

Take heart. I'm sorry for the disheartening turn all of this has taken, but your instincts about your child are BOUND to be best. Try to hold that in your heart for awhile.

Anonymous said...

Another delurker: How much does it cost to get an evaluation at Stonybrook or Yale or Kennedy Kreiger?

Thanks.

MothersVox said...

Thanks, ABFH, for the Einstein quotation. It is so funny about Einstein being so "delayed." We really do need neurological diversity . . . Imagine if all of our Einsteins could survive public education . . . world could be quite a bit better off. And one thing is for sure, No Child Left Behind would have left him behind.

And to the new delurker, welcome . . . you know, I don't know what the evals cost at those centers. My guess: $5-7K. It's $5K for a neuropsych from the person who just did our ed-psych. Usually an autism evaluation would be more -- they'd have to do a developmental history.

Does anybody out there know what the cost is for an eval at any of those places?