Study Update – Week I don’t have a freaking clue.

Despite the best of intentions I have been plagued with the “Is he getting the placebo or the drug” question throughout the study. It’s so very hard to not stare intently at him each day trying to judge, is he whinier than usual? Is he more social? Is his language better? It’s enough to make a Mom nutty, assuming she isn’t already there!

For a long time I would have sworn he was on the placebo. We noticed nothing different. He was the same sweet, awesome kid. There were no moments where a light bulb suddenly popped on. I guess maybe, despite understanding that it takes time for things like this to build in your system, we didn’t really believe that we wouldn’t notice anything because it was so subtle. I mean, I KNOW my child. We are pretty darn focused on every thing he does or doesn’t do on a daily basis and have been for 8 1/2 years.

When I commented on it, I was told by other parents who’d been in the same position..”You will know once you start titrating down.” Mmmm, hmmm.

So, we’re titrating down now, we’re about 1/2 way off and O.M.F.G. Clearly, we were on something. Caleb is still sweet and awesome. He’s just sweet and awesome with a side of “holy emotional roller coaster” and a dash of “pleasepleaseplease stop whining!”

He is also capable of sitting and focusing on a toy appropriately for long periods of time while we visit with family. I thought it was a fluke on Christmas but he spent almost all of Saturday quietly entertaining himself while we visited with my grandfather. His attention has improved so much that I even floated the idea of removing his ADHD medication to see if the study drug alone can handle that. His overall improvement has also been commented on by the school and by family members this holiday season.

So, in conclusion…yeah, something was going on and now something more is going on…and January 11th cannot get here fast enough! There is zero question about that Open Label Trial now!

I forgot the very BEST highlight!

And really, it deserves it’s own blog so it’s all good.

During the meeting I was brought to tears by one of his teacher’s comments. I no longer even remember what lead up to this exactly but his teacher was commenting on how they keep pushing him and challenging to do more when she said this…this was her explanation…

“Because he can do anything. Anything.”

It wasn’t fluffy BS, it came out just so matter of fact…as just a throwaway…like everyone knows this.

I will never forget how I felt when I heard that. I cannot even tell you how1 mind-blowing2 it was to hear those words coming from his teacher.

I can say now that the entire nightmare of his kindergarten year IEP, the fights, the tears, the raging anger…every second was worth it to get here…to this school where everyone just knows that Caleb can do anything.

And right now my dad is shaking his head because he has been telling me my entire life. “Things always work out.” I can be a slow learner.

  1. fucking []
  2. Sorry, I’ve been trying to be good that gets an f-bomb. []

No one pass out, this is an actual update about CALEB!

Last Thursday we had an IEP meeting, another of the team progress meetings we’ve been having every 4-6 weeks for the last two school years. It’s taken me a bit to get this all together, what with our magical Elf guest and last minute Christmas preparations but may I present…

Our quarterly report.

First, I have to start with this…the PRINCIPAL came. As soon as she came in I immediately thought, “Oh, ship.” BUT there was no “Oh, ship!” She came to observe and learn more about Caleb. We’re not used to having “admin” (to use KQ’s term) come to our meetings unless they’re there to cheese us off…it was nice to have someone come just to be there. It goes back to that whole making us feel like part of the community thing that she does so well. Love it.

Anyway, the meeting was shockingly predictable. Caleb rocks, he’s awesome and funny and sweet and everyone loves him sososososo much. Also, he’s smart and manipulative (in funny ways) and putting the smack down on his goals. Come on people, tell us something we don’t know. Sheesh.

Kidding!

There were so many awesome moments during the meeting…the highlight reel includes…

  1. They’re no longer using that stupid Vantage Lite which Caleb has always, always, always hated with a passion. They’ve given up. We suggested it might be time to give it up last spring and they now agree.
  2. He’s now using an iPad for a communication device and loves, loves, loves it. He’s motivated by it and USING it. His assistive tech specialist told us, “He’s happy to see me now!” He used to tell her “good-bye” every time he saw her and now he greets her. Yeah, he REALLY hated that device. For those who are interested, he’s using TouchChat (http://touchchatapp.com/) as the app, the teacher likes it more than Proloquo2Go. It’s $149.99.
  3. He’s been more social in the last few weeks. We’re seeing this at home too, he’s hugging people and greeting people he hasn’t in the past.
  4. He’s participating more in circle time. He is calling out answers to questions, and they’re on topic. (Ex. Today is Dec. 20, so the kids were figuring out how to make 20 with coins…Caleb suggested 20 pennies!)
  5. During his share times he is now looking at the kids who are raising their hands and calling on them rather than blindly calling on his favorite peers. He’s calling on kids he hasn’t ever called on before (who are raising their hands.)
  6. One of the goals that his ST was totally regretting writing (she didn’t think it was even possible and was questioning why she thought otherwise)…he’s making AMAZING progress and it close to completing it. Which only means we will write a newer, harder one but do NOT tell him that!

Pretty cool, eh? Before he heads back to school we will be buying him a “work” iPad for his communication. He’s going to be SO bummed to find out “Angry Birds” isn’t work!

Day 29 – Sweet goodbyes.

Day 29 – Sweet goodbyes.

One day, a couple weeks back, Sneaky elf went to school. Caleb was amazed and thrilled when Sneaky turned up in the hood of the classroom aid’s hoodie sweatshirt. It just so happened to be Caleb’s day to share at morning meeting. What a coincidence! Caleb’s classmates, who had been hearing lots of stories about Sneaky, were very excited to get to meet him in person.

Since today was the last day of school before Sneaky will head back to the North Pole until next Christmas, Sneaky decided to send some small treats and holiday wishes to his new friends. I’m really, really grateful to Sneaky for stepping up and handling this task because I hadn’t given any thought to treats for C’s classmates yet and time was up.

Poor Sneaky fell asleep in the box after he finished the last card…that’s what happens when you stay up to 2AM you silly elf!