In memoriam

I met Tanji Dewberry at the Happy Mama Conference -- that is, the conference for mothers of special-needs kids -- last year. I was struck by several things: She was incredibly nice; she'd turned herself into a strong advocate for her son, a little older than my son, who also had ADHD; and man, did she wear amazing shoes.

She was one of the few other New Jerseyans I came across that weekend, and she'd self-published a children's book, "Oh Fiddlesticks!" designed to teach kids how to handle their anger. I was nosy, so I quizzed her on how she'd gotten the book done, how much it had cost, that sort of thing; she readily answered every question. She signed a copy for my son.

On Sunday night, she and her son died in a house fire.

The cause is unclear, though possibly an electrical malfunction. I keep being horrified by this story all over again. She was doing right by her son and trying her best to achieve her dreams, and it is just not right that the two of them are not here anymore.

Over on the Happy Mama Facebook page, there is talk of creating a conference scholarship in her honor. I think that's a nice idea, and should one happen, I'll post any pertinent links. I keep looking for an obituary, for someplace to send a memorial contribution or a card or, I don't know, something. I feel like attention should be paid.

I can't say I knew her well. But she seemed very much worth knowing. And I think this is a tremendous loss.

Incidentally, her book? My kids like it. In fact kiddette asked me to read it to her tonight.

I'm glad I bought it when I had the chance.

Hills and other obstacles

So I had a meeting with the school last week to further brainstorm ways to help our not-quite-behaving kiddo in the classroom -- they've already modified how they use his behavior chart, and I suggested a clock-style chart on his desk to keep him on task during the day, as well as a few other things. I also alerted them that we'd taken kiddo off the medication, because, turns out, it was making him fall asleep on the bus every day, and not otherwise doing much good for him. (On to Plan C.) They were understanding, and said they would keep an eye out for aberrant unmedicated behavior.

Though honestly I was kind of curious: What's he like unmedicated? Turns out the answer is, "More hyperactive than you remember." Also randomly defiant and near-constantly goofing around. It hasn't been a bad week ... just an interesting week. I haven't gotten many reports from his teacher, though, so I don't know the full story yet.

One thing about kiddo, though: He's quite charming. The school officials told me, with some amusement, how kiddo has been handling his "heavy work" assignment of carrying a load of books down the hall for his teacher. (The idea being, it's a sneaky way to build extra physical activity into his day.) He was walking out into the hallway and telling the first teacher he saw, "My teacher wants me to carry all these books!" And then the teacher would say, "Oh, let me get those for you!" And then he is heavy work-less.

The school officials noted that he is so cute, after all, that people would do such things for him, and he's pretty smart, and I said I hoped he never enters politics. Although if anyone needs a fence whitewashed, they should probably give him a call.

In the meantime, at least it's sort of warm enough to do actual exercise outside. Kiddo and I went for a bike ride over the weekend. I was relieved to find that my bike, which I got at a garage sale last year, had tuned up and then left in the garage for months because of my back issues (and also winter), rides pretty nicely. I made one other wonderful discovery:

On bike, I am faster than kiddo.

"Come back here, you little Mommy!" he kept yelling.

"You have to pedal faster to get up the hill!" I called back.

Maybe I should've gone slower. But the thing is, I've been chasing after this kid since he could walk. Through parks. Across parking lots. Down hallways and around the mall. Run run run. You know what? You chase me for once, sweetie.

Oh, am I going to enjoy this. Every single weekend, whenever we're free. "Hey kiddo, want to ride bikes? Catch me if you can!"

Mwa ha ha ha ha.

Kiddo has also started T-ball practices, and I'm pretty sure he's actually hit the ball at least twice. I'm going to take that as a plus.

Another plus: He turned 7 on Sunday (yeesh, he's 7? I have a 7-year-old?) and had a most fabulous time at his party, and even more or less patiently waited until well after the party had ended before opening his gifts. Patiently waiting for anything is a bit of a struggle for him, so I'm glad he was able to see it through.

So, lots of pluses, even among the troubles and the roadblocks. Who's up for a bike ride?

The karate kid scores

with a fourth-place trophy in his first-ever sparring match. I'll take it. First of all, I'm thrilled he even got out there on the gym floor, got his gear on -- after just getting the gear for the first time last week -- and kinda sorta remembered his moves enough to spar with someone (although he appeared to have forgotten he could kick as well as punch). Second, not every single kid walked out of there with a trophy, meaning some merit was involved. He also got promoted to orange belt level 1, which struck me as a possibly fast promotion given he just got yellow last time around, but DH thinks the first couple levels are easier to get promoted in, and after that you have to really work at it. So, fine.

I know I sound like a bit of a killjoy here, doubting the belt promotion, but I am severely allergic to the "Everyone gets a trophy! Everyone's a winner!" mentality and frankly wouldn't send kiddo to karate twice a week, or pay for the gear and the shiai entry, if I thought he wasn't really earning his wins. As they put it in my favorite Pixar movie:

Helen: Everyone's special, Dash.
Dash: [muttering] Which is another way of saying no one is.

Kids should be allowed to be bad at things. How else will they ever figure out what they're really good at?

We did have one issue early on. Kiddo and kiddette and I were wandering the gym floor, looking for his classmates so she and I could go find seats in the bleachers, when a few of the classmates ran by. I sent kiddo after them, but he came back, upset, because the girl leading the pack told him to stop following them. I thought maybe he'd misunderstood, and sent him their way again. Nope, the girl definitely told him to go away. He came back in tears.

Now, he's had a little bit of a crush on this girl, and has been known to goof around when standing next to her in class; his way of showing off. Add to that his usual inability to read social cues, plus she's a little older than he is. I totally get where all this would be annoying to her, and if she by herself had told him to scram, I wouldn't have said anything about it. But there were other kids following her, so suddenly it was a group rejection, and I was left standing there with one crying boy, his bewildered sister and no idea what to do with either of them.

I marched them both across the floor until I found one of kiddo's instructors, and explained that the other kids were being a little mean. He promised to take care of the situation and of kiddo. Walking back through the room, I spied the girl and her cohorts standing near the entrance. I had a brief mental argument with myself -- do I say something? do I keep walking? -- and then the little devil on my right shoulder won out. "Are you always that mean to my son?" I asked her, and kept walking.

Probably I shouldn't have said anything. Probably the girl didn't mean to make him cry. Probably no one in this situation is old enough to react appropriately to anything, except me, and I still didn't. But his heart is so much on his sleeve, and it's going to keep getting broken, because he has no idea that some of his behaviors annoy people. And I can't protect him from that, and I won't always deal well with that knowledge.

At the very least, I'm starting to nudge kiddo to stay away from the girl from now on. Better for everyone involved.

Still, even with that incident it was a good day. Kiddo got his trophy, he'll get his new belt in class (what do we do with the old ones, anyway? Donate them somewhere? Make funky art projects out of them?), and he got to scarf pizza and cookies at the after-shiai party. All's well that ends well.

Dear Abby, think again.

I mean, I guess it's progress of sorts when ADHD makes it into a nationally syndicated advice column. Even if you don't totally agree with the advice given.

A high school student (I'm assuming high school, no age given) wrote to say that their ADHD medication was suppressing their appetite, and so they didn't eat any lunch, and well-meaning teachers and friends have been pushing them to eat, not knowing the situation. The student didn't want to tell anyone, because some of those friends make fun of people with ADHD.

Abby (okay, "Abby") says to inform the teachers about the medication, but added this:

"It's a shame they would tease someone who has ADHD because it's a condition that so many students and adults share. However, because you feel it would make you a target, you're wise to say nothing."

No, no, no.

I wouldn't call it "wise" to hide a significant part of yourself away in hopes that no one will laugh at you for it. That suggests that people are right to laugh at it, and no they are not.

Also, frankly, if you're different, people pick up on it, and if they're so inclined, they'll make fun of you for it even if you pretend that difference doesn't exist.

Really. Just ask every kid in grade school who made Jew jokes about me.

You have to turn it around. Why is it on you to convince people not to pick on you? Why isn't it on them to try harder not to be jerks?

You should never be ashamed of who you are, and anyone who would try to make you ashamed is not someone who deserves the privilege of sitting next to you in the cafeteria.

At no point have I hidden kiddo's diagnosis from anyone. His family knows. His teacher knows. The other moms know. His karate sensei knows. Because I am not ashamed of him, and because figuring out what works and doesn't work with him is sometimes a group effort. It takes a village to tackle ADHD.

And because of that openness, other people are open with me; they talk to me about their special-needs child, or ask where to go for an evaluation. It's good to know other parents deal with the same issues.

Even if I wanted to, I'm not a good enough liar to pretend I have some sort of Stepford-perfect son. I'd rather be honest, with other people, with kiddo and with myself. I don't want kiddo to grow up thinking he needs to hide his ADHD from people. I want him to be proud of who he is -- all that he is.

Just my two cents, Abby. Carry on.

The experiment begins

Because the psychiatrist, who'd meant for us to be using the generic medication all along, was nice enough to call the pharmacy and say so. The medication may not work, but at least we won't go broke finding out.

He's only been on it for a couple of days. He's a bit extra tired, but that was supposed to happen. As for any improvements ... hard to say. He's still not listening at school, and not completing his work. He had a full-on meltdown the other day, in the middle of a birthday party, in front of the other moms, because I wouldn't buy him a toy. I played it off as, "Yeah, he's tired," as I tried to peel him off the floor, just because it's easier than saying, "Yeah, he does this a lot, he has utterly no emotional coping skills, the slightest bother or disappointment makes him collapse and he's not really a brat, even though he's coming off like one right now. So anyway, what were you saying about the weather?"

Amazingly other people never seem too bothered by the meltdowns. I don't see how that lasts, though. He just looks too old to be having them.

I think we have to give the medication a few weeks to see if it makes a difference. And if not, I suppose we see what's behind Door #3, and whether it comes in a generic version.

He did score really well on some sort of reading assessment test the other day. So, there's that.

Also, he had fun over the weekend at our joint pre-birthday hibachi celebration with friends (great idea, M.), and apparently also at the St. Patrick's Day parties at school. I don't quite get the St. Patrick's Day parties. Mainly because 1. we're not Irish, 2. the holiday as celebrated in America has very little to do with the actual holiday and 3. still not Irish. Although I do like soda bread.

But he came home talking about the leprechaun that snuck into the classrooms and did mischief, or something like that, and I sincerely hope we're not expected to keep up that whole business at home, because keeping track of Santa's sled and remembering the cookies and milk and the carrots for the reindeer is about all I can handle. Jewish holidays never involve invisible magical creatures, unless you count the prophet Elijah at Passover, and all you have to do for him is leave out a cup of wine. Which he never drinks, because, I'm guessing, he doesn't like Manischewitz wine either.

Our next event will be kiddo's official birthday party, for which he has so far wanted a Lego cake, a Minecraft cake and possibly a Paw Patrol cake, unless that was kiddette, who has been placing her pre-order way too far in advance. Such indecision. Just imagine if I were ambitious enough to make the cake myself. (Not a chance.)

Growl.

So kiddo's psychiatrist suggested we try another medication, as the one kiddo is currently taking appears to be -- what's the technical term? -- doing jack squat. Well, OK. I'm not especially interested in hopping back on the merry-go-round of medication hoping to find the right one, but a lot of ADHD families go through this, so it was maybe an inevitability.

I did veto stimulants, because they're notorious for causing appetite suppression. As in, the kid loses his appetite and refuses to eat. That's a freaky enough prospect in itself. Kiddo, however, really can't be losing weight. I'm not saying he's skinny, but he might conceivably blow away in a stiff wind. I can't imagine how he could get any skinnier and I'm not interested in finding out.

It's kind of fascinating, the skinniness, because right now this is what we hear every morning after breakfast: "I'm still hungry. Can I have another food?" I try to pack him extra food at lunch so he can get through the day. I have no idea where he puts it all.

So the psychiatrist prescribed a non-stimulant, saying basically, let's see if this one helps. OK. She knows I like to use as little medication as possible, so she said we should be halving the dose with a pill splitter. Fine.

Not fine. The pharmacist said that particular pill should not be split, on orders from the manufacturer, because splitting it releases the entire dose. Naturally, it was Saturday night when I learned this and we couldn't do anything until today.

So I called the psychiatrist, who never called back (I hate when doctors don't call back), and the pharmacist, who reported that he'd gotten through and the psychiatrist said to use the whole pill, and I could come pick it up whenever. Oh, OK, so actually the full dose was fine all along? Gosh, how convenient.

I went to pick it up and discovered that it was pricey. By which I mean the co-pay is $40, for two weeks' worth of pills. Two weeks? So we're supposed to drop thousands of dollars on a medication that might not even work, whose proper dosage appears to be in doubt?

It's bad enough that ADHD parents have to deal with 1. the ADHD and 2. the various amounts of ridicule and contempt from total strangers who think they're horrible parents for medicating their children. Dealing with this nonsense on top of it all is a bit much.

I did not buy the medication yet, because I want to have a serious talk with the psychiatrist first and I will be happy to call as many times as it takes for that to happen. At least we still have some of kiddo's current medication ... for whatever that's worth.

Part 2: Information

Yes, I am aware that a two-part post should really be on successive days. It's been that kind of week. Next week I should be back to my Monday-post schedule.

Anyhow. Two things happened of note: I read an article on ADHD that didn't make me seethe, and I heard Dr. Edward Hallowell speak.

First the article, regarding the new book “The ADHD Explosion" by Stephen Hinshaw and Richard Scheffler. I believe I trashed a Times op-ed by them a few weeks back, so it is much to my surprise that I found the article interesting. Their hypothesis: The rate of ADHD diagnoses varies wildly by state -- from under 5 percent of school-age kids in some states (like my state, for instance) to more than 10 percent in others. That correlates with states that passed No Child Left Behind-style accountability laws linking school funding with students' performance on standardized tests. The states with those laws had the highest rates of diagnoses and medication.

From the article:

ADHD diagnoses of public school students within 200 percent of the federal poverty level jumped 59 percent after accountability legislation passed, Hinshaw reports, compared with less than 10 percent for middle- and high-income children. They saw no comparable trend in private schools, which are not subject to legislation like this.

How do ADHD diagnoses help schools at risk of losing their funding? First, Hinshaw notes, for kids who do have ADHD, it should improve their performance in school, including their test scores. Second, it may help kids who are disruptive in class settle down, which could improve scores for the whole class. Finally, in many areas, the test scores of student with ADHD diagnoses aren’t counted. So even it if it doesn’t help the child, it might help the school.

By the time No Child Left Behind was signed into law, 30 states had already passed these accountability statutes. The maps of those states and the states that have high ADHD rates look remarkably similar — mostly Southern states, with a few in the Midwest. ...

It doesn’t mean that ADHD isn’t a real thing, with a biological basis. Hinshaw and Scheffler are very clear about that. But it does underscore our worry that misdiagnoses are being handed out by doctors with little time, little training in psychiatric disorders, and a lot of pressure to do something to help kids who are failing.

I do appreciate that the authors aren't calling ADHD fake, unlike certain other "experts." But this research sounds striking. I'd want to read the book, obviously, but I do fully believe that there are doctors rushing a diagnosis because they think they're being helpful, or because they have no formal training in the matter. Hence my regular drumbeat of "general practitioners shouldn't diagnose ADHD." It's frustrating to me because rushed or false diagnoses makes legitimate diagnoses, like that of my son, seem less legitimate. If some of the diagnoses are bogus they must all be bogus, right?

Hey, you live with my kid for a week. See what you think. He doesn't run in front of moving vehicles anymore, so, you know, you'd have that going for you.

Here's the thing. I know a psychologist-to-be. (I'm being deliberately sketchy on who.) That person told me once, that if they were treating a kid coming from a lousy home life, who had trouble settling down in class because of the lousy home life, they would prescribe the kid ADHD medication just because it would help the kid settle down. Because assisting the kid with the lousy home life takes too long? I don't know. At any rate, I did already know the "just medicate the kid, whether he's got it or not" attitude is out there. Which is why what this article says sounds right to me.

If you're going to help kids, you have to help what's really wrong with them, if anything, and not just make things more convenient for you.

Also I HATE standardized tests. I hated them when I was the one taking them. I hate them now. I call them "multiple guess tests." They don't prove anything, except how well you take standardized tests. They have nothing to do with true intelligence or education. And I was a "gifted" kid, an honors student, in the top 10 of my graduating class in high school, and I'm saying this. I'll teach my kids to do as well as they can on such tests, because it's part of the school experience, but I'll also teach them the value of independent, critical thinking, which carries a lot more weight in life than "fill in answer A, B, C or D."

... and on to Dr. Hallowell. He gave a talk at a nearby high school and you would not believe how many parents showed up. At first I thought, are these all ADHD parents? because I forgot Hallowell is also a general sort of parenting expert, not just an ADHD expert who also has it himself. (Read his book "Driven to Distraction" if you want a good overall view of the disorder.) This was a more general sort of talk, based off his book "The Childhood Roots of Adult Happiness."

He's a good public speaker, should you ever get the chance to see him -- resonant voice (he said he had a cold but I didn't hear it), good sense of humor. For instance, he described his family background in New England as the "WASP triad" of "alcoholism, mental illness and politeness."

His contention was that $1,500-an-hour (!) tutors to help a kid get from a B-plus to an A aren't necessary (this is some sort of New York thing, apparently?) and that helping a kid grow up to be happy doesn't mean getting them straight As or being their buddy or getting them the best of whatever, but teaching them confidence, initiative, responsibility; keeping them connected to their family, their community and their spiritual tradition; and giving them time for unstructured play. "If we could just have an attack of sanity," he pleaded.

It all sounded pretty sane to me. But then DH and I can be a bit old-school in our parenting. We don't want to be our kids' friends, though they're lovely people. We want them to grow up to be mature, responsible adults who contribute somehow to the larger society. We don't much care if they don't get straight As. You know how much that matters once the child graduates? It doesn't.

I think DH and I can afford to take the long view because we were both "gifted," both in honors/AP classes, and having gone through it, neither of us entirely liked the attitudes that went along with it. There's a difference between getting good grades and actually being smart. We prefer the latter.

This is a roundabout way of saying that I agreed with what Hallowell said and was a little surprised, I guess, that people need to hear it from a professional. I did enjoy the speech, though. I would've bought his book, since he was doing a signing, but they'd run out. Should've bought it before the speech.

Since I do think he has many common-sense things to say, I'll include a link to his website here. Peruse at your leisure.