And Finally Acceptance

We had our IEP meeting last week. Actually, it was a “he’s not getting an IEP and here’s why” meeting. Overall, I’m pleased with the outcome. The nurse was not there. That is good, I might have been forced to rip her face off. Well, not really. The day before the IEP meeting I decided that I would go in a kinder-gentler version of myself and not the face-ripping-off version that I was prepared to be. I think that was generally appreciated by all in attendance.

The school psych running the meeting was also a good thing. She’s very organized and thoughtful. She had spent time with Elliot and validated our concerns.  The school psych intern talked about programs she’s doing with Elliot (he gets social stories and model me videos with some other kids once weekly during lunch (he had never mentioned to me that weekly he ate lunch with a grown up)) and all the data she and the classroom teacher collected. It was very objective. There were even charts! It was lovely.

For those of you with households with one or more engineer parents: there’s lots of anecdotal evidence that we have a higher tendency to have Asperger’s/Autistic children. Is it because we, ourselves, are on the spectrum? Is it because we value characteristics that define the spectrum? There’s no clear answer. From Wired 9.12

It’s a familiar joke in the industry that many of the hardcore programmers in IT strongholds like Intel, Adobe, and Silicon Graphics – coming to work early, leaving late, sucking down Big Gulps in their cubicles while they code for hours – are residing somewhere in Asperger’s domain. Kathryn Stewart, director of the Orion Academy, a high school for high-functioning kids in Moraga, California, calls Asperger’s syndrome “the engineers’ disorder.” Bill Gates is regularly diagnosed in the press: His single-minded focus on technical minutiae, rocking motions, and flat tone of voice are all suggestive of an adult with some trace of the disorder. Dov’s father told me that his friends in the Valley say many of their coworkers “could be diagnosed with ODD – they’re odd.” In Microserfs, novelist Douglas Coupland observes, “I think all tech people are slightly autistic.”

There’s something to that. We all know the Unix admin that doesn’t shower and sits in his corner cubicle ignoring all the social cues thrown his way. Or the programmer that tells a user he’s being dumb, not because he’s trying to be an ass but because after explaining for the upteenth time that no, the code doesn’t behave like that even though that’s how you do your job, but because he’s run out of ways to describe the problem. And he doesn’t see that the user is about to have a breakdown. (Yes, I am being sexist … I know plenty of women in the industry. We may not be as savvy as marketing people or as warm and fuzzy as pre-school teachers but we don’t seem to be as socially unaware as (many of) our male counterparts.)

The psychologist that did Elliot’s evaluations explained that we all have the characteristics found on the spectrum, it’s just whether or not they impede our lives. For example, I sort my M&Ms by color and then eat them in a certain pattern. But only if I’m at a table and only if I have enough to make it worth my time. It’s not like I can only eat them sorted, I can dump a hand full in my mouth and go on. So yes, I like patterns and ritual but not to the point that it impedes my life. (BTW the psych totally said it was normal to sort candy like that. Probably because she does it too.)

Both my kids have a high level of rigidity. We found out that Audrey will only start eating lunch once all her plastic containers full of food have been opened. If she can’t open one, she’ll wait for her teacher without eating any of her other food. We’ve never told her to do that. For her, lunch doesn’t begin until everything is ready. That’s her lunch system. She doesn’t deviate from it. I’m sure she can, she just doesn’t. If she were told to, she would be able to handle that. Therein lies the difference. She has rituals but can deviate from them without detriment. And that’s where Elliot is, he is full of rituals and expectations and he doesn’t know how to deviate from them. He doesn’t know why you would deviate. He’s learning how to brain-storm alternatives and think through the consequences of a different choice. It doesn’t come easily to him. In his defense, why would you think about the consequences of doing it differently when this way works just fine? Unfortunately, not everyone has the same idea of working just fine. As it turns out, most first graders want their ideas heard and want to have a voice in the group project. So, Elliot’s learning how to exhibit empathy and make friends. He’s already made great strides. He asked to play basketball this season (after he understood that he wouldn’t be on the same team as Audrey) and is excited to play soccer next. Both require interacting with unknown kids, something that last year he would not have voluntarily signed up for.

I have high hopes that he’ll be a well-rounded nice kid that other kids like and respect. It doesn’t have to be a lot of kids, just a small circle to make him feel loved throughout the day.

And because it seems to sum up my feelings currently, from the venerable Dr Seuss:

In my world, everyone’s a pony and they all eat rainbows and poop butterflies.

Down the Rabbit Hole

Alternatively titled: Navigating the World of Special Services in the Public School System

Navigating, ha! Double ha. Ha ha. Navigating would suggest I have a map. Or saw a sign. Or knew whether I was a driver or a passenger.

Elliot was diagnosed with PDD-NOS. For those not well-versed in your acronyms, it’s Pervasive Development Disorder-Not Otherwise Specified. In short, he’s on the Autism spectrum but doesn’t meet enough of the criteria for an Autism diagnosis.

Here’s the thing about the Autism spectrum … it’s a spectrum. As humans, we all have traits on the spectrum. For example, we look for patterns – it’s what we do. Whether or not you can use that pattern matching to count cards in Vegas or just to sort your M&Ms is whether or not you’re diagnosable or just human. It’s whether or not they’re pervasive or debilitating. Elliot’s are not debilitating. Well, not often. He’s rigid. He can be rigid. His tendency toward rigidity can make other things impossible.

He’s so completely typical sometimes.

Two weeks ago I made a request for evaluation for special education services. Elliot would really benefit from some OT and some behavior modification programs. This isn’t your mother’s special ed, y’all. This is 21st Century special ed. Where kids are mainstreamed and kept with their peers as much as possible. Which is good. Because Elliot’s issues? They’re all social. If he were a grown up we’d call him a Software Engineer*.

So, I made a request 14 days ago. Today I’m told that our diagnosis from an outside agency is unacceptable. That the diagnosis “needs to be written by an individual with prescriptive authority like physician assistant, certified nurse practitioner or a physician.” I am having a hard time collaborating this assertion. The Autism Society says a clinical psychologist can diagnose. In Colorado diagnostic services can be provided by a “professional person” meaning “a person licensed to practice medicine in this state or a psychologist certified to practice in this state.” Why an Autism diagnosis needs to come from someone with prescriptive authority is baffling – there is not a pharmacological treatment for Autism.

Tomorrow I’ll fight the good fight using my words, making phone calls and asking questions. Hopefully it will result in something that helps Elliot.

*We’re not taking his diagnosis or his need for intervention lightly. But honestly? At the end of the day, when I’ve done all I can to help ensure his success I have to be able to laugh. If I don’t laugh I’ll cry. And that won’t get Elliot the services he needs.

20 Questions for the Kids

Shamelessly lifted from KellyGO

1. What makes you happy?
Audrey: my green kitties, my purple zebra and Banjo makes me happy too
Elliot: Legos … sock monkey and Banjo!

2. What makes you sad?
A: Having time out.
E: Losing sock monkey. If I lose any of my favorite things.

3. What makes you laugh?
A: tickles
E: jokes from Where The Sidewalk Ends or a poem from there … tickles

4. What is your favorite thing to do?
A: play with my green kitties
E: play Legos

5. What are you really good at?
A: doing a tickle fight, I’m really good at some games
E: building things out of Legos; I’m really good at hiding Audrey’s green kitties

6. What are you not very good at?
A: playing Legos
E: brainstorming, but I like brainstorming, except it’s not my favorite

7. What is your favorite food and drink?
A: rootbeer float, macaroni & cheese
E: rootbeer float, breadsticks, pizza and sushi

8. What’s your favorite color?
A: turquoise
E: don’t have one

9. Where is your favorite place to go?
A: bowling alley
E: Dave & Buster’s

10. Who are your best friends?
A: Madeleine, Robert & Emily
E: I don’t really have a best friend. I have lots of friends but not really a best friend.

11. What are your favorite movies or TV shows?
A: Scooby Doo
E: Scooby Doo … wait, Tom & Jerry

12. What are your favorite books?
A: I don’t have a favorite book.
E: How to Train Your Dragon

13. If you were a cartoon character, who would you be?
A: The small Yogi Bear (Boo Boo)
E: Bugs Bunny

14. What does Mommy do when you’re not around?
A: read a book
E: type or take a nap

15. What do you do when Mommy isn’t around?
A: go to school
E: play Legos

16. What is something Mommy always says to you?
A: you call me pumpkin head because I have orange hair
E: there’s nothing really that you always say to me, you say lots of words to me

17. What do you and Mommy do together?
A: play games
E: tickle fights, play sudoku

18. How are you and Mommy the same?
A: we both have freckles, we both have red hair (Elliot added that he has more freckles, calling himself a “freckle face”)
E: we each have blue in our eyes, we each have brown in our hair

19. How are you and Mommy different?
A: you’re taller
E: you’re a girl and I’m a boy, we’re different because I only have red hair in the summer

20. How do you know Mommy loves you?
A: you give us kisses and hugs
E: yes, that’s pretty much all

Matchy-Matchy

Maybe I can ease back into regular over-sharing blogging by posting pictures every day this month. It’s worth a try!

Let’s begin, shall we? Elliot and Audrey dressed in their coordinating outfits headed to a family birthday party. I was asked if I sewed the clothes. Uhm, no. A ruffle on a dress? Yes, I can add that. An entire shirt? No.

On Heartbreak and Ice Cream

My heart breaks for him.
He breaks my heart.

Elliot is struggling with school. Not the academics but the school-ness of school. Last year it was not wanting to sit on the mat and say good morning with the class because he already knew how and didn’t feel the need to practice. Funny. Sort of. Probably indicative of not getting the social aspect of the exercise.

He inadvertently trips the teacher. She doesn’t fall, merely stumbles. She says, “Elliot you should say you’re sorry for tripping me.” He says, “I didn’t mean to. You tripped over my foot. I did not trip you. And since I didn’t mean to I have nothing to be sorry for.” Logical? Yes. Empathetic? No.

He’s such a good boy.
And my heart is breaking.

He meant to write 7  on the board and wrote 8. He became unglued because he meant to write 7. Why should he be out of the game for a wrong answer when he meant to write the correct one? And why won’t the teacher see the logic of his argument of intent? And why is he being sent to the quiet corner to calm down? He didn’t mean to yell at the teacher. It just came out because she wasn’t understanding him.

There’s a special door Lego piece. There’s only one in our whole collection. Both kids want it. They rock-paper-scissors for it. Audrey wins. Elliot changes his mind. “It’s mine,” he argues. “It came in my set,” he explains. He yells. She yells. Peter intervenes. Elliot says, “I changed my mind.” He loses the piece. He loses his shit. He yells at Peter. He has to go to the quiet couch. He can’t calm down. I cuddle him like a baby. The tension leaves his body and he rests against me.

I lay awake in bed thinking that I cannot send him to school. They do not like him. They do not love him like I do. I should home school him. Peter points out that the social opportunities for he and I alone together all day are not great and he needs socialization.

He’s a good boy with pure intentions.
He’s struggling.
He hurts.
I cannot fix this alone.
I cannot fix this.

I send him to school. This day is better than the day before. As it turns out ice cream is an effective motivator.

Ice cream cannot fix this.

Santa Fe: The Awkward Family Photo Edition

All I want is a picture of my family with everyone facing the same direction and appearing normal. Is that too much to ask?

Vacation Through Kid’s Eyes

A few weeks back we took a road trip that included Santa Fe, Petrified Forest, Meteor Crater, Grand Canyon, Glen Canyon, Bryce Canyon (not really a canyon btw) and Capitol Reef. Here are some highlights from Elliot’s perspective.

Kill Kansir

On the 100th day of Kindergarten the class was instructed to draw a picture of what they’ll look like when they’re 100 years old. They also needed to write a sentence about it. This is Elliot’s, notice how he crossed out “100″ and wrote “37″ – maybe they are equally obtuse for a six year old mind?

In case you need translation

I will be looking for germs strong enough to kill cancer. I will do this job from 37-100.

I am equally impressed and horrified at the prospects of the life he’s chosen. The student loans alone are enough to make me weep. Also, all the politicking around science? It’s a miracle anyone wants to do research anymore. But this is what we need: kids who don’t know that they can’t suceed on something like curing cancer. It’ll be a fantastic day when there’s a cure, even if my son isn’t the one to find it.

Sports Fans

Elliot is playing basketball! Our rec center has this great season for little kids that’s only six-weeks long, just enough to get a taste and have fun. So far he’s doing great. He stays with the ball, puts his arms up when playing defense and passes. Most importantly, he’s having fun.

I just read some republished posts at Pioneer Woman and will attempt better pictures next week with new knowledge in my head!

Blue

I think this picture captures the true color of Elliot’s eyes accurately. I’ve lost count of the number of doctors/teachers/grandmothers that have warned me that those eyes with those eyelashes are going to cause problems later in life.

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