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Catching Up with Carter J

When I don’t write much about Carter for awhile, I’ll get notes from people asking how he is and what’s up with him. I told Carter about that yesterday and he asked, “So those people are kind of like my fans?”

“Yes, I guess they are,” I said, and that made him shoot out flames of happiness just like when he’s getting ready to spend the day with his grandma and grandpa or he’s accomplished something very difficult at school.

Then he gave me a long list of things he wants to tell you. There was at least ten minutes of material about Ninjago (that’s a commercial for Lego in TV form) and I’m going to make an executive decision and just distill that to this: Carter really, really likes Ninjago. The rest, though, is stuff that might interest those of us who are not pre-pubescent kids.

Carter went back to school a few weeks ago with almost none of the angst and drama that usually accompanies this transition. I was in Chicago for the first two days of school and we expected that that would drive his anxiety levels to a very high level, but he did great. For the first time ever, he walked into school on the first day with a few hugs and kisses from his dad, and no tears. He was all puffed up when I got home from my trip, telling me how he was scared but he could totally handle it and it was a good thing because some of the new kids were scared and Ms D and Ms B needed his help comforting them.

For a guy who has spent so much of his life in agony because he was crippled by anxiety and convinced he couldn’t handle things, this was a huge deal. He hasn’t had nearly enough opportunities to be proud of himself, so to see him feeling like big stuff was a real treat. Brian and I were shooting out our own flames of happiness to see him feeling so good.

The school he goes to is tiny and isn’t really divided by grade. The elementary kids are split into upper and lower grades, but movement between the two rooms (and some of the older kids move back and forth to the middle school room, too) is fluid. Carter spends the morning in the upper elementary with Ms B doing math, reading, and writing. In the afternoons, the two groups get together to do project-based work in social studies, science, and art. Once a day, he goes to work with Ms C for 30 minutes of one-on-one reading instruction.

He wanted me to be sure to tell you about his teachers, who he loves and adores. He’s been with Ms D (the lower elementary teacher) for four years now, and he and she have a special connection. It’s true love between them. Ms B is new this year, and Carter says he likes her almost as much as Ms D, which is pretty impressive since if Carter lists his favorite people in the world (something he does obsessively), Ms D gets a place the list more reliably than several members of his own family.

If your 11 year old child wears a top hat to school and doesn't come in tears, you know that's an extraordinary school.

If your 11 year old child wears a top hat to school and doesn’t come in tears, you know that’s an extraordinary school.

This smooth transition back to school is a happy surprise after months of surprising stability. Spring is typically the time of year when Carter comes apart (pretty common among people with mood disorders) but last spring was the smoothest we’ve had in many years, which led to a better summer. Early fall is usually when we’re beginning to get back to baseline. Last year, we were more knowledgeable than ever about what Carter would need, so we increased his lithium early (When he drinks more water and sweats more as the weather heats up, his lithium blood level drops, requiring a higher dose.) and treated sleep issues aggressively. For the first time, we got the manic episode right at the front end, before it spiraled out of control.

Now that the weather is cooling off, he’s starting to be a little shaky (a sign that his lithium levels are a little high) so soon we’ll reduce his dose, but this makes us a little more optimistic.  After several nightmare springs in a row, we have hope now that if we could get the jump on mania once, we may be able to do it again.

There is only one symptom I can think of that is not dramatically improved. We haven’t seen one of those terrifying, seizure-like rages in a couple of years. His anxiety has not improved as much (and he has been struggling with anxiety-induced hives for a few weeks) but it is noticeably better. He’s had no more than the very occasional, minor breakthrough psychosis and he’s even sleeping well. Only his frequent episodes of irritability have resisted all our attempts at treatment, but with so many other successes, we have renewed hope.

The insurance continues to refuse him any occupational or physical therapy, and as a result he gets a little more knock-kneed and sway-backed every year (this is a result of his hypotonia, and the extra weight that his anti-psychotic medication brings with it doesn’t help). We won’t stop pressing them to provide these services, but I’m not optimistic.

Carter was napping during church and I was trying to get a picture of the hives on his hand. I don't know if you can see those, but isn't he cute???

Carter was napping during church and I was trying to get a picture of the hives on his hand. I don’t know if you can see those, but isn’t he cute???

At school, he likes math the best. He wants the books we read to him to have lots of action and danger, and it’s best if there are monsters. He’s glad you are curious about him and he hopes you’re having a very good day. Finally, he says that, if your kids have trouble with feelings like he does, he would like you to tell them that Carter says if you use your skills, take your medicine, and ask for help when you need it, maybe you’ll feel better and he hopes nobody has to go to the hospital today. 

Our kids with mental/emotional/social/behavioral issues may have lots of big problems, but they also have big hearts full of compassion. It isn’t always easy to be Carter’s mom, but it’s always easy to love him.

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