Monday, March 25, 2013

Relative calm

Kiddo's psychiatrist says only two off days in the several weeks he's been on medication is actually pretty good, and if there's still improvement overall, then we're doing well. So we're looking at the bright side, I guess.

It does strike me that kiddo appears to be on the young end of the patient scale at this practice. Nearly everyone else is a bored/annoyed/vaguely punked-out teenager waiting with their parents, or an adult waiting alone. Once there were two kids a little older than kiddo -- no way to tell which was the patient, or whether they both were -- and of course kiddo and kiddette ran right over to them and chattered at them, and watched them playing their little video games. (Because no one ever accused my kids of being unfriendly, or shy.) But that hasn't happened since.

Kiddo doesn't seem to mind, though. At the latest appointment, he sat and listened to the white noise machine in the lobby, which was playing soothing rushing-water sounds (better that than "My Cherie Amour"?), and asked questions about it and made me cover him with my coat like it was a blanket. The young female staffers taking his blood pressure cooed over him, his psychiatrist told him to keep up the good work and out the door we went.

Also, we've started karate. My research indicates that individualized sports like martial arts or swimming (hello, Michael Phelps) are better for ADHD kids than team sports like baseball or football -- they're less likely to get overstimulated or, say, lose focus in the outfield and forget why they're there. DH is not thrilled to wait another year on baseball, but we did agree he could teach kiddo the basics this year so he's prepared for next year.

The karate uniform has posed some issues, in that it's a little too big for him. Kiddo doesn't always like loose clothing, and he really really didn't want to wear the jacket. (I have no idea what the proper name for it is, so we're going with jacket.) His teacher had to call another boy over, one kiddo is buds with, to show that he also is a little small for the uniform, and his sleeves are rolled up. Then it was OK. Going barefoot was still not OK, because the floor is cold. So getting him changed for class has been ... trying. But once class starts, he's punching and kicking with the rest of them, with a big grin on his face. Which is a bit of a relief. I very much like his teacher -- he's infinitely patient, but he makes sure the kids follow the rules. That's the kind of structure kiddo needs.

Truly, I suck at tying the belt though. I made his teacher show me again, and I'll probably still whiff it next week. Teacher says it takes about six months to figure out the belt. I'm sort of hoping he's kidding.

In the meantime, we prepare for our annual Easter/Passover eggstravaganza. I do occasionally wonder what the supermarket cashiers think when I have egg dye kits, matzah, bags of candy and a shank bone all in the same cart, but maybe they don't notice. I for once even attempted to make my mother's chicken soup recipe, which I assure you will taste nothing like hers, and also I punted on the matzo balls and bought frozen. But I did actually cook the chicken in the broth, skimming the fat off the top and all that, so I want partial credit.

We don't keep kosher, but I do stay away from bread products during Passover, which is a big sacrifice because I love bread products. So it'll be lots of salads this week. And matzah with Temp Tee cream cheese, which is the best way to eat matzah. I don't plan on restricting the kids too much, but I will give them matzah. Because people seem to like it when they don't have to eat it for an entire week every year.

We won't go through the Haggadah line by line at our seder, because then our seder would last until Memorial Day. But we'll get the gist of it across. After all, the Jews' escape from slavery is a good story, and should be respected as such.

... and then DH and I will start mapping out the Easter baskets and where to hide the eggs.

Anyway, happy whatever holiday to whoever's out there, and may we all have a good week.

Tuesday, March 19, 2013

A setback or two

So kiddo and I went to the school's mother-son dance on Thursday. I waffled about going at first -- was he too young? was I just looking for an excuse to dance somewhere? -- until it was pointed out that now is the optimum time to take him to such a thing, because he isn't yet mortified to be seen in public with me. There was a DJ and cookies and other boys (some in button-downs and ties) running about, and all the moms got flowers and had their pictures taken with their sons, and I chatted with the other moms and danced and kiddo and I even danced a bit. I requested "Somebody That I Used to Know" for him because he loves that song, which he refers to as "The Robot Song," and he does the robot dance to it. We had a fine time.

And then the next day at school, he got in trouble twice for being physical with kids -- to the point of being sent out of the room -- and got two check marks on his chart.

It was such the opposite of his behavior lately that the school folks and I were emailing back and forth trying to pinpoint the reason. All I can figure is, the dance. He was up too late, he ate too many cookies, I don't know, all of the above? I'm just thrilled the thing he and I did for fun sent him into a trouble spiral the next day.

He seemed generally okay over the weekend, especially since the weekend included a most fabulous birthday party aboard an honest-to-goodness chugging train (much thanks to C.). He still seemed okay on Monday, back to his usual nine checks. Today, he got no checks. That's "no" as in "zero," as in worse than he's ever done on the chart before. And he hit a kid with the sensory cushion he's supposed to be using to sit on.

Today was also a delayed opening for the district due to the boatload of snow that suddenly got dumped on us last night and stretched my commute home to two hours, thanks a lot, weather gods. A delayed opening for kindergarten, since it's half-day around these parts, means A.M. kindergarten is lengthened while P.M. is canceled, or vice versa. No, I don't understand it either. The upshot was, kiddo went into kindergarten later than usual and was there longer than usual, and he's lousy with changes in routine. Apparently today, really really lousy.

Now I have no idea what to expect tomorrow. Back to nine checks, since we're back to regular hours? Or will something else throw him off? Does this mean the medication isn't working? Do we increase the dose? Add another medication? Keep him home whenever school is delayed? Seal him in a bubble and never let him leave the house? I'm at a bit of a loss.

We're seeing the psychiatrist this weekend so we'll discuss with her then, obviously. He just needs to get through the week without too much more trouble, if that's possible.

He can't just totally collapse whenever something is off kilter in his world. Things are always off kilter in real life. If he never learns to handle that, how can he ever function?

Sunday, March 10, 2013

The week in ADHD news

And it was an interesting one. First this post, from the NY Times, on a study that followed a number of children diagnosed with ADHD into adultood and found they were noticeably more likely to suffer from substance abuse, anxiety, depression or another psychiatric disorder as adults. Grim? Yes. But here's the point:

"William Barbaresi, who led the study, hopes that evidence of the children’s continued struggle as adults will help to fight the perception that A.D.H.D. is simply an overhyped childhood disorder and will encourage parents to seek the best possible treatment for affected children, and to keep treating them appropriately through adolescence."

The Mayo Clinic's own release on the study says it followed 5,718 children in Rochester, N.Y., from childhood to adulthood, which included 367 diagnosed with ADHD; 232 of them participated in the follow-up study and about three-quarters received ADHD treatment as children. The researchers found that 29 percent of children with ADHD still had it as adults, and 81 percent of them had at least one other disorder. Also, three of the ADHD kids they'd followed had committed suicide by the time the study began, and ten of them were in prison (or jail, it just says "incarcerated").

Dr. Barbaresi also tells

"I think we as a society continue to primarily think of ADHD as the obvious behaviors in young children. Our studies have shown that the majority of children and adults with ADHD have other problems that go with it. In childhood they include learning disabilities, which affect over 60 percent of children with ADHD. So these issues have to be identified and addressed along the way. Often that does not happen."
He also says:

"A combination of medication and other treatments for, for example, the learning and other mental health problems that often go with ADHD, is the way to go. Careful, regular follow-up is associated with signficant improvement associated with the most concerning outcomes -- in education, risk of substance abuse and reduced rates of emergency room visits."

And not precisely this week but close enough, there was this story in the Times, about a study of genetic data in 19 countries that found links among schizophrenia, bipolar disorder, autism, depression and ADHD. This is, according to the people behind the study, the largest one ever done on psychiatric disorders. Other genetic or environmental factors seem to determine which disease people get (if any). But the study could offer new ways to treat such diseases. I'd link to the original study, which was published in the Lancet, but it's written in medicalese and not English.

So we're not making this stuff up about our kid, and it's not bad if he's on meds. Nyah.

He is, incidentally, continuing to show improvement on said meds. He went from getting three or four checks on his behavior chart (on a good day) to an entire week of eight or nine checks. His teacher says his behavior has improved. I should note that I promised him a Matchbox car every time he got six checks -- this was back when he never got six checks, and I was trying to motivate him. I gave him a car every day last week. Good thing the cars are a dollar at Shop-Rite.

We did meet with school officials last week about an IEP -- their feeling was that since his issues are behavioral and not academic, they could be adequately addressed with the 504 plan. Disappointed but not surprised. We did also use the meeting as a brainstorming session for ways to further help him, so that at least was useful. For instance, they suggested having him wear headphones on the bus so he can ignore distractions. (We're retrofitting an old iPhone for him.) And his occupational therapist said heavy work -- carrying things, moving things -- helps settle him, so they're trying to incorporate that into his day. We're meeting again in a month for the next follow-up.

At least I do feel we're on the right path here. And that's pretty important.

Sunday, March 3, 2013

Meds, week 1

Not much to report, actually. No side effects that we can see. He does seem a little calmer, his teacher says, but he's very much still capable of having meltdowns. Since, you know, he had a few. The psychiatrist wants to take things extremely slowly, and give him very low doses of things, which is fine by me.

(Bless his teacher -- I told her which drug it was and she went and researched it herself, just so she knew what to look for in case of side effects.)

He had a fine day on Friday, but then it was Read Across America Day, and a whole bunch of people came into his class to read to them ... including me. I've been on vacation, doing this and that around the house, and hey, when else am I going to get to read to his class? They were. So. Cute. Kiddo and a few of his buddies came running over to figure out how tall I was, and if they could get as tall as me by jumping repeatedly. Another boy came over and asked, "What are we doing?" I explained what the others were up to, and he happily joined in.

I read "Smelly Socks" by Robert Munsch -- it's a favorite in our house -- and the kids seemed to like it, though possibly the boys more than the girls. Especially popular was the part where Tina's friends come to her house to yank her dirty socks off her feet and wash them. When they bang on the door, the book says "BLAM BLAM BLAM BLAM!" First kiddo wanted to do the line. Then a few other kids chimed in. Soon we had an entire BLAM chorus and I had a slightly difficult time getting them on to the next page.

At any rate, they were all very sweet and seemed much more interested in high-fiving me than in asking questions about the book. And I hope I didn't give any of them the idea of not washing their socks.

This week might be a better test of how kiddo does in class. It's nice that our family is supporting us on this; as conflicted as we were about medications in the first place, I don't think we would've wanted to hear judgmental comments from loved ones. Maybe it works, maybe it doesn't, and then we try something else. Because that's what you do with this disorder. There's always a plan B. Or C or D or E or hell, Z.

We are also moving ahead with the IEP process; we're supposed to have a meeting with the rest of the IEP "team" this week, that being the social worker, a Child Study Team member, his teacher and a few other folks. The district mailed us a booklet spelling out our legal rights regarding IEPs and special education services generally, which was a nice thing to do, even if it is required. (Note: I don't know if it's required.)

So progress is progressing progressively. I think.