Wednesday, May 12, 2010

So Much Going On

I just got home from meeting with Gillian's teacher and principal today. We've been trying to get her in to a new doctor, and finally had our appointment (which we waited 2 MONTHS for!) yesterday. When I went to the school to pick her up, I talked with her teacher for a bit, and a new phrase got introduced to me. Well, not new, so much as something I've never considered.

See, Gilly has always marched to the beat of her own drum. And then some, really. She's always had quirks, and things that we consider problem points- things that cause melt downs, screaming, and fighting. We try to avoid what we can, but inevitably, in day to day life, things happen that stress Gillian out. Problem points to us are the areas that cause problems for Gillian.

We were told very early on, when she was probably about 3, that she has ADHD. We never went through for a formal diagnosis, nor do we medicate her. We kept holding off until it was a problem at school, because while we are not against medication, we are not for kids being over medicated, either. Even Chris, our 11 year old with ADHD, we only medicate for school. Weekends, school breaks, summer- it's all 100% unmedicated.

At the start of each school year, I talk with the teachers about Gillian, and her idiosyncrasy's. I make sure they know that if they are seeing any problems, that all they have to do is talk to me. This stems back to when my son, Chris, was in Kindergarten.

The teacher Chris had for Kindergarten was unwilling to deal with how Chris was as a kid in her class room. This was before we did any work with getting him diagnosed with ADHD. Her way to deal with the problems Chris presented, was to sit him in the hallway alone, sometimes for as long as an hour or two. Near the end of the school year, after we had already had 2 regular conferences with the teacher, I went in to pick him up and got to talking with her about 1st grade.

She was having a tough time deciding whether or not Chris should be put in 1st grade, whether he was emotionally or educationally ready to handle the stress of a longer day, and less play time. I asked her why she felt that way, because through out the year, we had gotten decent progress reports. He was a bit behind on learning to read and write, but not enough to be considered "behind".

That's when she dropped the bomb that she had regularly been discluding Chris from class almost the entire year for behavior problems, and never once thought to tell us. Not once. So, as you can see, I feel very strongly about talking with the teachers of both Chris & Gillian at the start of the year, and each time, I tell them about that teacher, to explain why I want them to communicate with me.

I have digressed highly, I admit it. I tend to over tell stories, and when I'm trying to tell a story, I want to tell every aspect of it. Let's get back to Gillian, shall we? She's in the 2nd grade this year, for reference sake. So, right from the start last year, her teacher knew we were aware of the problems Gillian has, and that she might be a bit more difficult in class.

Shortly into the school year, as the teacher told me today, she realized that her typical behavior plan of "This is how we do it" wasn't working with Gillian. She said that most kids adapt to a new structure and set of rules within about 2 weeks, but Gillian never did, even though it was plain to see she was trying to. That's when she started coming at  it differently, and finding tricks that did help Gillian tremendously.

All in all, where am I going with this? Gillian's school has an Autism Spectrum Disorder teacher on staff, and an Autism program in place to help with kids who have Autism, including Asperger's Syndrome, which is on the Autism Spectrum, but isn't classified quite the same.

In fact, in Gillian's classroom alone, there are two Autistic kids and 1 AS kid. The school as a whole tries to educate the other children around them on ways that these kids are different, even if they look the same, and that includes watching kid friendly videos from time to time.

A few weeks back, they watched a video called Intricate Minds 2: Understand Elementary School Classmates with Asperger's Syndrome. It's a video that interviews kids with Asperger's Syndrome, ages 8-12, and talks with them about how things make them feel, how they might be different, how they react differently.

At the time, she kept seeing a lot of how Gillian is in 1 little girl specifically, but also in various ways the other kids were as well. She said she kept thinking on it and thinking on it, and finally just went ahead and re-watched the video two more times, keeping Gillian specifically in mind, and more and more, it just kept explaining some of the ways Gillian reacts and things that she does.

She was very careful to stress to me that she doesn't want us thinking she's trying to diagnose her, but that they have implemented several things into Gillian's day that they do for AS kids, and that they have helped her tremendously.

Now, when she was sharing all of it, I thought, from looking it up in the past, that maybe Gilly had some traits similar. In fact, while I did mention it to the doctor yesterday, I wasn't completely on board with it really fitting how Gillian acts. I came home, looked it up online, and was again thinking the same thing.

There's a check list of things- criteria a child has to meet before they could be considered AS. There isn't a blood test, there is no definitive test that stamps a child with YES or NO on their foreheads. Instead, they are observed, and there are lots of questions about health and background- milestones such as learning to walk, talk, etc. There are early indicators we may not have noticed, but that might have shown it early on.

In text, I couldn't see much of it fitting Gillian. Hearing her teacher talk yesterday, I felt that she certainly does do the things she brought up, but then when I'd look at descriptions, I couldn't wrap that around Gillian.

Today I went in, though, and watched the video Intricate Minds 2, and was floored by just how much of it IS Gillian. How many mannerisms she shares, how many quirks, and problem points she shares.  Website descriptions of Asperger's really doesn't make it clear. Not at all, actually.

Being that it is part of the Autism spectrum, I had some images in mind of how severe certain 'symptoms' were, and I kept looking at Gillian and thinking, "Ok, she does that to a minor degree, but I don't think it's like THAT!"



Apparently inflexible adherence to specific, nonfunctional routines or rituals

I took that to mean a child who rigidly sticks to a routine, down to changes in the daily schedule causing problems.

What I didn't take it as, but do now, is a child who has a hard time with changes in their schedule, and who do better with a schedule that stays the same. Gillian's teacher said that for the most part, she has done much better now, and the only recent times she has had problems were the first two days after Spring Break, when she was out of the sync of the school schedule.

 And again from

Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures
Most of the sites talk about the lack of eye contact, and quite often, kids almost have to be asked to make eye contact. To me, I had an image in mind of kids who look anywhere BUT at your face or into your eyes, and who avoid face to face looks.

But, in the video, I saw kids who more so look like they just can't keep their eyes still. Instead of focusing on your face, they will be looking all around- your face, then the window, then the book, then off to the side, then at the ceiling, then back to your face, and then the floor, the chair, the table, the toys, the wall, the window, your face, etc. Just back and forth- seeing your eyes, but not keeping their facial attention on your face.

And that is Gilly, down to a T. Talking to her, she'll look at you. But she won't stay on your face. It doesn't mean she isn't focusing on what you are saying, but she just isn't looking directly at you.

With all of this? It opened my eyes, not just to what might be going on with Gillian, but also with Chris. Because, while just about every thing on the video that reminded me of Gillian, reminded me even more so of Chris.


Michelle said...

hard situation. Autism (and the whole spectrum) can be very tricky. Good luck! I hope you find some solutions that work!

Shirley said...

Hi Heather: I happened upon your blog today and as a former school principal and grandmother to a child similar to your daughter, I thought I would comment. You may want to read some about Sensory Integration Disorder. The symptoms can sometime be confused with ADHD and/or Asperber's Syndrome. My granddaughter was diagnosed as Developmentally Delayed but has been making excellent progress. However, we have to insist on a strict, predictable schedule, regular meals and naps (easier said than done), and plenty of sleep. In addition, she seems to do best with very structured, predictable classroom climates. I don't know if this information will help you. Good luck to you.