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.

Acquiescence

I’ve had this post drafted for almost two weeks. I needed to let it rest before I could say the nurse acquiesced.

Your two psychologist that gave the diagnosis and recommendations are licensed in the state of Colorado after further followup.

Yay! Our outside agency’s findings will be included in Elliot’s initial evaluation. That’s great news. And I really wish that were the end of that for me, but, alas, my brain can’t shake it quite yet. Along with all the usual minutia bouncing around inside my head, I’m thinking about the power and faith we put into experts.

We look for experts in all aspects of our lives. We look for it in software departments all the time. We want subject matter experts, domain experts … how do you become an expert? What happens when one of the expert’s core pieces of knowledge is deemed incorrect? Can an expert be fallible and still be an expert? Do we really need experts any longer since we can all go out and google ourselves silly?

I’ll argue there are some experts that cannot afford to be wrong, first responders come to mind. But even medical specialists are suspect as we often ask for a second opinion. We don’t trust our teachers to be experts in child development or appropriate curriculum, it’s set at a state and national level.We don’t trust the chef at the restaurant to cook the meat to it’s best temperature, we inform him what we like.

I look to, and expect, that people in a chosen field are expert (or are growing to become expert) at their craft. When you pass me misinformation, that you yourself did not attempt to corroborate, I can’t accept you as an expert.  This is not to say there isn’t room for not knowing, but when you don’t know, say so.  At the end of the day all we’re left with is our reputation. The person that informed us that our outside agency diagnosis was inadmissible put her reputation on the line after “asking around.” In the same email where she concluded that our psychologists were in fact allowed to diagnose, she stated:

One of the nurses role in the IDEA and /or the IEP is to interrupt the medical information given to the school by outside agencies.

I think she meant “interpret” not “interrupt”. But this further demonstrates the lack of detail our medical expert adheres to. I cannot trust her at face value. Not being able to trust someone that is supposed to be on our team to help find the best solutions for my child is horrible. It’s ruffled my mama lion fur.

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

Haiku Woohoo

a quiet machine
another load is waiting
must move laundry now

A Day at the Beach

We spent our fall break far from cold Colorado in warm, sunny Florida with fabulous friends. It’s really hard to argue against 84 degrees and white sandy beaches.

Atheists Don’t Have No Songs

In case the last tune wasn’t to your liking, more music for the season

h/t Nylonthread

Songs of the Season

A little something to help you get into the holiday spirit

Sledding

Gotcha! You probably thought, “oooh Colorado finally got snow.” We didn’t. Here’s a trip in the way-back machine to when Elliot was an only child.

November 28, 2004

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.

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