That’s roughly what the last few months have looked like.
I logged in to write about it yesterday (as I have a few times before) and once again ran out of time. However, I noticed something. Even though I haven’t posted in entirely too long, people are still visiting this blog. People are still entering searches that lead them here. Therefore, I should keep writing. It’s why I started this blog in the first place. Once upon a time, I was searching for answers and I stumbled upon someone else’s blog. She was a single mom with an autistic child. And unlike some of the other blogs I’d read, she sounded like me. But her blog was long since given up. I wished she’d kept it up – if she had, her son would have been roughly the same age as Colin. What are they up to now? What have they tried? What worked? What didn’t? I’ll never know.
(Even as I try to write this, I’ve been interrupted twice already!)
Here’s what I wrote on 12/21, but never finished the entry to post:
This past Wed (12/19), Colin went back to see Dr. L (psychiatrist). We did something we should have done before, but never had – we took notes almost daily for the 2.5 weeks Colin spent on the new medication schedule. Mrs. E (special ed teacher) also emailed us a few times, letting us know what she’d observed at school.
The first week, Colin was doing well in the AM, but not so much in the afternoon. Rick was giving him his afternoon dose of Clonidine at home because we had not gotten the form filled out and faxed to the school yet (this is sometimes a challenge with our doc’s office). By the second week, he seemed to have issues all day long – the meds were not affecting him nearly as much and he was back to distractions and hyperactivity.
Dr. L has upped his Adderall XR to 20mg/day and upped his dose of Clonidine in the AM to .1mg (he was taking .05mg before).
Yesterday was the first day on the new dosages. He was downright zombie-like within 20 minutes! After breakfast, he plopped down on the couch and buried himself in pillows. When I told him to go get dressed for school, he told me he couldn’t get up.
I asked him to try and he realized he was fine and able to go about his business, just a little slower than usual.
I got a phone call at lunch from Mrs. E – she wanted to discuss the new medications. She told me he seemed very disoriented first thing in the morning. I told her that concerned me, too.
THEN she told me that they’ve been working on double-digit addition for a while now and Colin has not managed to do a single problem on his own yet – he asks her for every step on every single problem, unable to recall what he needed to do each time. Yesterday? He sat down and did TWELVE problems without ANY help.
And then he wrote a full-page for an assignment he was given.
I almost fell out of my chair. I had tears in my eyes, that’s for sure!
Things were good for a bit. Then the anger started to amp up again. At our psych visit in January, we expressed concern over the anger and Dr. L had us add 25mg of Seroquel in the AM (he takes 50mg at night). We hoped that would help. We also got the form signed and turned in so that he could take his afternoon dose of Clonidine at school instead of after he got home. I thought maybe – just maybe – we were getting there this time. Just a tweak here or there! We’ll be fine!
And then over the last few weeks, school days have taken a turn for the worst. Episodes of cursing, spitting, hitting, kicking, throwing his shoes, refusing to work, etc. Yesterday was the worst.
I got a call from Mrs. E (sp ed teacher) yesterday afternoon – she was very concerned. He’d acted out in the AM a bit, then was throwing food at lunch. After lunch, they sent him to Mrs. E where he refused to work, kicked his chair, threw his shoes, started kicking the wall, cursed at his teachers and spit. They took him to an empty classroom that’s sometimes used to let kids decompress. No stimuli in there – empty room, blank walls. They hoped it would help him calm down.
Instead, he amped up. He started running circles and doing cartwheels and literally bouncing off the walls. He never slowed down, just kept getting worse. After a while, they realized that wasn’t working and brought him back to Mrs. E’s room. There, he continued to act out and then started hitting and kicking his teachers. He had to be restrained by one of them until he could calm down. He’s never gotten that bad at school before.
Once he was calm, he apologized to them. He said he was sorry for hitting and spitting and saying bad words. Then he sat down and took his spelling test and made 100.
They thought he might have calmed down enough to go back to the gen ed class room for the rest of the day, but when they went into the hallway, he started spinning and they knew he had to stay in the sp ed room.
Mrs. E knew Colin was listed as a “walker” and said she was going to walk home with him because she was really worried about his behavior today and didn’t think he should be walking home. I explained that they only go across the cross walk and then Rick meets them and either walks home with them or they ride in the car. She said, “Okay, I’ll keep an eye on him until he gets to Rick, then.”
I love Mrs. E. I don’t know how she does all that she does every day for Colin (as well as the other kids in her care).
We put a call into Dr. L to see what he thinks about everything – haven’t heard back yet. I just don’t know what to think. It’s almost as if the extra Seroquel has made him worse instead of better. Seems to go that way with any sort of mood stabilizing drug we’ve tried. In the beginning, it seems like a miracle drug… then suddenly he takes a crazy left turn and we wind up worse than we were before.
In better news, we’ve been fighting with the school to get Colin a psych eval through the school system and they have FINALLY AGREED! The testing will be sometime in the next 60 days. Long story short, they did not like the testing that we had done 2 years ago and refused to accept his autism diagnosis. They say they think it could be FAS or something else masking as autism. I told them I don’t care WHAT it is, we just need answers so we can help him!
As I wasn’t sure whether or not we’d win this battle, I had also been looking for an independent evaluation again. This time, touching on points that the school said they wanted to see, etc. Our play therapist the kids see recommended a colleague of hers. However, she’s out of network and it would have been very cost prohibitive. That doctor, however, is a professor at TWU as well and she offered another option. She has 2 grad students that need to complete a psych evaluation for their coursework and said that if we let them perform the evaluation, she will monitor the entire process and it would be free of charge. We went ahead and jumped at the chance. We’re meeting with them today for the evaluation. I was tempted to let Rick take Colin and I’d stay home with the other two, but the more I thought about it… the more I really would like to stay, especially if they’ll let us observe the evaluation. I’m interested to see if there are any changes in his answers from two years ago… also want to see what exactly they ask him.
Up again, down again… I know this is so hard on Colin, just as it is on us. I don’t know how to help him, but we’re trying our best.