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Sunday, April 27, 2008

Affect is Everything.

We hear a lot about kids with ASD not having "good affect" or having a "flat affect." Affect is how emotions, experiences, etc. register on the face and in body language. A little kid going "ooooooooooooo!" with big bright eyes when she sees a balloon? Affect. A little boy scrunching up his face when he sees a truck and going "chugga chugga"? Affect. Ellie's affect can be a little flat when she is using echolalia to express herself. it's like she knows that these words, these ideas, aren't really hers, so she doesn't invest herself emotionally in them. However, when she tastes the yum of a fresh blackberry during picnic snack, there's no question how much she enjoys it, or how quickly another one is about to pop into her mouth.

Monday, April 21, 2008

A Great Day.

1. Stacked 11 blocks, without being prompted.

2. Said bye bye to Sally Hicks, without being prompted.

3. Did Head, Shoulders, Knees & Toes all the way through--without coaching.

4. "Look at that fan. And look at that other fan! Those are pretty fans."

5. "Want to play with Emma. Emma, are you done eating?"

6. Continually reminds me that I am so lucky to have her.

Sunday, April 20, 2008

Daniel Tammet, or, The Savant Myth

My book club just read Born on a Blue Day by Daniel Tammet. The discussion was excellent (as usual) but it started me thinking about the myth of the savant. Not every kid with an ASD has the meteoric intelligence of a savant, but I've found that people are curious whether or not that's true. "Does she show any particular talent?" is a question I've been asked, even by professionals during the interview process. I want to say, she has a TON of talents! She can sing all the words to Me and Julio Down By the Schoolyard, she could count to fifty at age two, she knows that taffy is a kind of candy and that Jose Feliciano is from Puerto Rico (trust me, she knows). But any affinity? Any real focused, superlative gift? I don't know yet. She could be a Daniel Tammet, a Kim Peek. But that carries a weight of its own, and I'm unsure of whether I would want Ellie to be so stratospherically brilliant. It can be lonely enough for her right now. Put her on that level, and I wonder if even I could reach her. Daniel Tammet's blog

Sunday, April 13, 2008

A Good Week, or, Who Doesn't Love To Swing?

Things Ellie can do this week that she couldn't do before:

1. Feed herself with a spoon and not spill a drop.
2. Use "I want," "I need," "I'd like" to express herself.
3. Look people in the eye and say, "Bye bye. See you later. Thanks for coming."
4. Crayon in perfect circles, using good pressure and a pretty decent hand grip.
5. Sit down on the potty to do her thing (diaper on still, but we're getting there)....this really isn't an ASD thing, it's a three year old thing.
6. Finally get back to Turtle Park for some good morning swinging. It's been too long and she clearly missed it.

Sunday, April 6, 2008

Why Blog It, or, Who Wants to Know?

It is very hard to be a parent in this position. There's not a lot that can be said when it's your child who finds herself in this position, and yet there's so much to explain. Is Ellie [insert uncomfortable, whispered word here]--retarded? No. Oh, no, no, no--far, far from it. Can she speak? Yes, and sing the whole soundtrack to The Sound of Music, among others. Does she meltdown in public? Really, it's more of a sit-in, sort of like the lunch counters in the South, or perhaps Gandhi swooning from hunger. And it's not anything any almost three year old doesn't also do--I've seen a kid manage to throw himself out of a cart at Target, and immediately said a hasty, grateful prayer that he didn't belong to me. Remember, not every "behavior" in a kid with challenges is a pathology. Can you go out in public with her? Why not? She doesn't have active leprosy. And the places we usually go are the places we usually go, so she knows people, we have a little thing that we do, and her expectations are clear. Will she go to school? Of course. What about friends? She has them, and she clearly is fond of them. Is she bonded to you? Does pushing through the stair gate and showing up in the bathroom when I'm in taking a shower count? How about crawling in bed with me and rubbing my face until I wake up? Or any of the milieu of gestures, actions, and behaviors she exhibits for her daddy, her sisters, even her kitty...emotional connectedness is definitely not an issue.

So why is she on the spectrum? Because her fine motor skills and expressive language skills are significantly behind those of other children her age. She has a very difficult time expressing her own needs in words of her choosing and in a way that makes those needs clear. She only started using the personal pronoun "I" this week, and that_was_HUGE in our book. Not to mention she paired it with an action word of importance--I want, I need, I'd like. All of a sudden, we have real, essential communication. Let's not even get started on what she can do with crayons--thank you, Danielle, our wonderful OT.

I guess my point in blogging is not to make big pronouncements about autism. I'm not that arrogant, and I don't feel I have to blame anyone or anything for this situation. I just know what we're dealing with. Maybe later, when we're less hunkered down, I can think broadly about it. But doing that now would cloud my focus, which needs to be 100% on getting this terrific little kid ready for the world. And the world ready for her.

Wednesday, April 2, 2008

You get what you get, please pull around.

The Taco Bell on Mayfield Road in South Euclid is absolutely notorious for lousy customer service. The food is exactly what you expect at the Bell--seven ingredients mashed together in a plan-o-gram way. But the service, well, now, that's what's wholly unexpected and always a treat. Sometimes your order is right. Sometimes they forget one little thing--with me, they always forget to 86 the tomatoes. Sometimes the essential-ness of the order is ok, but they screw up the details--subsitute hard tacos when you ordered soft. And sometimes, you get someone's order who may have gone through the drive through 10 minutes ago. You can never tell.
The kicker, tho, is that regardless of what you order, the cashier's attitude is always the same--that whatever comes out is yours. Don't bother trying to send it back, or fix the problem, or complain to the manager. They are not interested in what you have to say about what you wanted versus what you got. We had a joke about this for a long time--"You get what you get. $9.39. Please pull around."
For whatever reason, we think that when we become parents, that truism fails. You think, in your post-bringing home baby empowered glow, that you can control everything about your kid's future, from likes to dislikes to idiosyncrasies, because you got him this far, right? My child will love chocolate, and pickles, and will secretly favor the Rolling Stones ca. 1968 over the Beatles, same vintage. My child will be able to sing, appreciate the fact that staying up 20 straight hours with a crying baby is very hard work and thank you Mom for going the distance, and will always volunteer to help bring groceries in from the car.
I still think some of those things about my children, especially my oldest. However, she managed to throw a little wrench in my plans for her. And no, there's defiitely no complaining to the manager this time.
Ellie has autism.