After the most recent issues, we requested an ARD meeting at the school. The meeting was attended by me, Rick, school principal, diagnostician, psychologist, speech therapist, Colin’s general education teacher and special ed teacher.
When we first arrived, the principal sat at the head of the table, Rick and I sat on one side. Mrs. E (sped teacher) came in and sat right next me. That made me happy – she’s so helpful and supportive. She cares so much about Colin.
During the meeting, we learned a lot. Colin’s been exhibiting other strange behaviors we were unaware of before. Seems everyone’s noticed a changes in him over the past month and half. He’s been regressing. His OCD tendencies have been getting in he way of his school work. He’s momentarily not recognizing people or places. He’s seeing people who aren’t there. (When he ran from school recently, he was looking for Pop – my stepdad – in the woods. Another time, he was adamant he saw Rick out in front of the school and needed to go talk to him.)
It was suggested that we take him to a neurologist. We agreed.
The school maintained that his services wouldn’t change with an autism diagnosis. The school psychologist also suggested that Colin may actually be suffering from FAS (fetal alcohol syndrome), which can mimic Autism. He seems to feel that too many rush to label children as autistic (he blames that for the increase in diagnosed cases) because it’s the “in” thing to do.
Here’s the thing, though. I’m not Colin’s birth mom. I do not take any diagnosis personally because he was never in my womb. Rick and I had nothing to do with him until the worst damage had been done. (I say that because I’m sure we’ll mess up our kids in our own way, but it would never be through negligence or anything done intentionally!!) So, if it is FAS, great, let’s find out and move on from there. I’ve been reading up and I don’t believe FAS fits. Sure, he exhibits the behavioral aspects of FAS, but none of the physical characteristics. And all of those behavioral aspects are similar to Autism, so I’m not sure how FAS can be assumed or thought to be more likely than Autism. For all we know, it could be neither – his psychiatrist pointed out that he could just have MR (mental retardation).
How are we to know without testing?
And the school still does not want to test. They went through the list of 13 items that are to be considered on the IEP of an autistic child and either gave us the info for how to reach certain groups or explained how he could qualify for certain services without a diagnosis, etc. The school psychologist also said he meets with another boy every other week for 30 minutes to provide behavioral/social therapy. He’s decided to add Colin to the meetings because he feels it would help both boys. (The other child is also in 2nd grade.)
On Thursday, we met with Dr. L (psychiatrist) to discuss the changes everyone has seen in Colin lately. We brought along a letter from his special ed teacher as well. I think that really helped some of our concerns sink in for him – a third-party was also noticing issues.
Dr. L started by acting shocked that no one else had mentioned we should see a neurologist before. (Um, HE never said that, either!) He suggested we speak to our pediatrician and ask her for a recommendation. He also said we need to submit a formal request to the school asking that they evaluate Colin – no matter his diagnosis, if we don’t know what we’re dealing with, we may be missing something.
He also wanted to change Colin’s meds. From everything we’d told him and from what he’d read, it just sounded as if Colin’s anxiety level was off the charts. When the doctor asked if kids at school were mean to him, Colin said no. He said, “Are they bothering you?” Colin said yes. “How are they bothering you?”
“They make noise,” he answered. That’s been another factor affecting his academics – he’s been acutely aware of any noises in the room and hallway lately. The diagnostician said she could hardly complete the yearly tests she gives him – in a quiet room – because every time someone walked down the hall or the A/C kicked on, he would stop and ask what the sound was, why it was happening, etc.
We’re back on Adderall. We told Dr. L that the biggest issue we had with Adderll before was that it helped his attention/focus, but did nothing for his hyperactivity. Dr. L has had Colin on a very low dose of Clonidine in the AM lately, and said that should help with his hyperactivity.
As of yesterday, he’s taking:
- .05mg Clonidine, 25mg Seroquel and 15mg Adderall XR in the AM
- .05mg Clonidine at midday
- .1mg Clonidine and 50mg Seroquel at night
Yesterday was a pretty good day. He was relatively calm and collected most of the day. He even sat down to work on building things with Legos again (something he hasn’t done in quite a while). He slept through the night, but woke up at 5am.
Unfortunately, he also seems miserable. Ever since our bout with Resperidone back in March, I’ve been more aware of his moods, not just his behavior. (The Resperidone made him absolutely miserable. I hadn’t realized HOW miserable until we took him off of it and saw goofy/happy Colin again.)
He’s not laughing like he usually does. In fact, yesterday, I only saw him smile a few times. (Until around 7pm when his meds were wearing off, of course.)
It’s a fine line. I want him to do well at school and have the tools/meds he needs to succeed, but ultimately…I want him to be happy as much as anything. Today is day 2 of the Adderall/Clonidine combination and he’s been emotional and moody. (And, as I watch him playing the Wii and lining the stools up just so, I worry that his OCD tendencies will always be an issue.) He’s playing his favorite video game right now (pinball) and looks focused but joyless.
We’ll see how the next few days go. I agree with the doctor that we need to move away from the Ritalin. I don’t think it’s helping him any more and the amount he was on was higher than an 8-year-old boy should be taking (80mg of extended release in the AM and 20mg of quick release in the PM).
This coming week, I’ll get my written letter to the school diagnostician requesting that they evaluate Colin. If they still refuse, we have a colleague of our play therapist that does academic psychological evaluations and can hopefully help us. I’m also going to find a neurologist and get an appointment as soon as possible.
All this with the holidays around the corner! At least we have most of our shopping done and – between the two of us – we’ll be home while the kids are out of school (Rick has off the week of Christmas, I’m off the week of New Year’s).
As I said to Rick when we were both feeling lost and frustrated last week: WE WILL FIGURE THIS OUT.