Road tripping

Well, of course I was worrying about leaving the kids for multiple nights. A lot of moms would worry about such things even if their oldest were not ADHD and known for bouncing off walls/running in front of cars/throwing fits over being asked to wash his hands. That particular extra factor was just the cherry on top of the large sundae of worry. In fact my original plan was that we would go away for part of one day, no overnights. DH talked me out of it, on account of it was our 10th anniversary, and that plan was lame. (I would like to note that there are plenty of nice day-trip spots in Jersey. Just saying.)

Grandma and Grandpa were up for whatever, and saw nothing to worry about. I privately worried that Grandma and Grandpa were not exactly the swiftest of runners. The kids' favorite battle tactic? Running in opposite directions. They're like little Ping-Pong balls, with legs.

So we arranged backup. Kiddo's nanny would come for two days to help out, and the grandparents would be on their own after that. And then I was cool with making hotel reservations.

I won't bother with suspense: Aside from an occasional time out, the kids were fine. They went to the pool, they went to the library, they went to the kiddie play place at the mall. They helped kiddo work on his writing skills. They read books, they baked cookies, they cheered kiddo on during his swim lesson. A grand old time was had by all. Because the thing I keep forgetting is, the kids always behave better for other people than they do for us. This is both useful, and immensely aggravating.

Meantime DH and I were in Boston, touring Fenway Park ("we have to go extra slow for the Yankee fans," said the tour guide, ha ha ha) and the Sam Adams brewery (it was us, a bunch of thirsty college kids and one poor pair of parents whose kiddies kept wailing in their strollers, not that I would bring my kiddies to what is essentially a 20-minute talk and a beer tasting) and getting massively stuck in Boston traffic. Because I forgot the cardinal rule of cities: Don't drive in them. Also met up with cousin E. for dinner at the Seaport, which was great fun and also instructive, because their son has Asperger's and she knows quite a bit about parent advocacy at this point. Her main point was, the school districts won't necessarily volunteer all the resources that are available to you; you need to research them, and then push for them.

I heard precisely one actual Boston accent, from the cafe cashier who I was going to ask about restrooms, but who clearly assumed I was going to ask about parking meters. "Sure, you need quahtahs?" she said. Hee.

We also drove all the way up Cape Cod and back, which you can do in one day if you're willing to skip a few towns. The Sandwich Glass Museum is interesting, with all kinds of lovely glass objects on display, and glassblowing demonstrations. We also stopped at the Edward Gorey House, which was charmingly odd, and I learned that Gorey had seven cats and loved "Buffy the Vampire Slayer," which is just cool. Fun/morbid fact: There are little gravestones in the garden representing the victims of "The Ghashlycrumb Tinies." I brought home several books for kiddo (no, not "Ghashlycrumb"), which may or may not make me a horrible mother, but he's made me read "The Epiplectic Bicycle" to him three times today so I'm leaning toward not-horrible. We ended up in Provincetown, which is this delightfully weird mix of funky shops, ice cream stands, kiddie attractions (a pirate museum! Really!) and drag queens on the sidewalk advertising the 10 p.m. show.

The antiques show in Rhode Island on the way home was less enjoyable, what with all the fisheye stares from all the expensively dressed attendees who correctly guessed that we were not in their tax bracket. Of course we couldn't afford anything there -- I usually can't in antique shops. I happen to like looking at antiques, because they're beautiful, and they're a reminder of a past way of life. Except to this crowd, apparently, who seemed to think of antiques as commodities to be bought, and could not believe my temerity in standing in their way when there were things to acquire. One of them practically nudged me aside with his cane. A disheartening experience, but the only downside to a really nice trip.

And the house is still standing, and kiddo and kiddette were not bothered in the slightest by our absence, and kiddo has already broken the little pirate ship I bought for kiddette. Because he's, you know, a pirate. Many thanks to Grandma and Grandpa, who made this trip possible, and I expect you'll sleep well tonight.

The prep work

So less than a month till we're supposed to sit down with the school district's 504 coordinator and write out the plan, and I'm frantically reading everything I can about 504 plans so I know what one should look like and what to expect and what to watch out for. So I don't sound like a total idiot, basically. Just like cramming for a final, minus the all-nighters and the cold pizza for breakfast. (Oh, don't judge me. That was college.)

I found one useful site here; it has sample 504 plans and resources from a couple other school districts. ADDitude magazine had a handy checklist (which I can't find the precise link for) offering suggestions for how to handle certain behaviors -- for instance, seating an easily distracted student near the teacher, or giving them written and verbal instructions if they're having trouble following verbal instructions alone. If the student loses books, allowing them to keep an extra set at home. That sort of thing. It's fairly common-sense stuff, but might be useful to put in writing anyway. 

Still, it doesn't help matters that every time I talk to somebody about 504 plans I get a variation on, "Well, they don't really do much. You should push for an IEP." Now, that may well be true. 504 plans come with a certain amount of legal backing but no extra financial backing, and most schools won't want to spend the money, especially if they're strapped (and aren't they all strapped?). I've read some accounts online in which parents couldn't even get their school to agree to a 504, so having the approval before he even starts school is something. But every time I hear "they don't really do much," what I'm really hearing is, "I can't believe you fell for that 504 BS, you chump." So it's not encouraging.

I really don't know whether the 504 will be enough for kiddo. Some days he's great. Other days, he head-butts his nanny at the pool. Or repeatedly runs off through the fields while we're blueberry picking, then takes off toward the entrance of the farm -- as in, toward the road -- because there's a sprinkler on out there and he's hot, thus encouraging kiddette to run too -- right into the parking lot. (Sometimes the biggest problem is that kiddette does everything her brother does. It's like having two kids with ADHD. And they're both surprisingly fast.)

He's definitely smart, and notices things. Last week, we were a little late for OT because a traffic light was out on our regular route, and we had to crawl through a detour. Yesterday, he not only remembered we'd been delayed, but he remembered the exact light that had been out, and he cheered when he saw it was working again.

I did check in with the school about the Brigance screenings -- the administrator who'd run the test called back within hours (they always return calls at this school, which strikes me as a good sign) and gave me a category breakdown of how he'd done. Turns out he'd done pretty well. Scored high on colors, syntax and numbers -- she asked him to count to 30 and he went to 41. (I've gotten him to go to 100, actually.) His visual motor skills are a little off -- he had trouble tracing shapes. And he didn't always know the proper names for things. She suggested working with him on word play and helping him practice writing. She also said he was friendly and enthusiastic.

I think he'll be able to learn at school. If he can sit still long enough to do it. And if he doesn't get, let's say oppositional with the teacher. Or the other kids. Or anybody else.

So I'll keep studying up and we'll see how things go.

ADHD: Celebrity edition

Because I find it reassuring that there are people who have grown up with the disorder, with or without being diagnosed, with or without going on meds, who become incredibly successful adults. Also, my suspicion is ADHDers are almost naturally drawn toward the arts and entertainment fields, because they tend to be so creative and crave attention, and because a 9-to-5 TPS Reports office job is not going to appeal to them. So here is the absolute beginnings of a comprehensive list of which celebs have it.

I tried to find interviews with said celebs in which they acknowledged having ADD/ADHD, but in some cases that wasn't possible -- just a lot of blogs name-checking each other's posts saying that so-and-so has it. Robin Williams, for instance: I couldn't find a single legit article saying definitively that he has it (I'll keep checking), but I found a whole lot of people who think he has it because he's so off the wall in stand-up and in interviews. I agree it's entirely possible -- yeah, I've seen his stand-up too -- but I kind of want him to say so himself.

A few names below come from an article in ADDitude magazine, which is a pretty useful resource, but then I couldn't find any corroborating articles elsewhere, so in a couple cases, this is the only source. Just FYI.

Disclaimer: Just because I include someone on this list does not mean I .. 1. like their music; 2. agree with their politics; 3. follow their team.

So here we go, in alphabetical order:

Glenn Beck: You know him, you love him ... or you hate him intensely. Either way, he's got it, and managed to build himself a bit of a media empire, so that's something. Here's the transcript of an interview with Ty Pennington a few years back in which they both discuss their ADD issues and medications. (More on Ty below.)

Terry Bradshaw: As in, the four-time Super Bowl champ. He goes into his ADD a little bit in this article, which yes, I realize is on the 700 Club website, but it's the best I found.

Russell Brand: Currently famous for breaking Katy Perry's heart, but he is a pretty big-deal comedian/author back in the U.K. Also, he was funny in "Forgetting Sarah Marshall," so there you have it. Unfortunately, the only mention of his ADD I found was this review of his new talk show, which you'll notice is less than positive. Sorry, Russell.

Sir Richard Branson: Per ADDitude and nowhere else definitive, although Mr. Virgin Airlines does talk about growing up dyslexic in this clip.

 James Carville: Per ADDitude, and apparently he also said so on CNN, although I can't find the clip. Super-Dem strategist and pundit, credited with getting Bill Clinton elected, and notable for his marriage to Republican strategist Mary Matalin, which I mention because I did kind of like the movie "Speechless," which was sort-of kind-of allegedly not at all based on their relationship.

Scott Eyre: The MLB pitcher -- most recently on the Phillies -- was diagnosed while he was playing for the Toronto Blue Jays, and he's made a point of speaking out about it to help other kids. Interview here.

Adam Levine: Probably the most notable right now, because he's everywhere, and also Maroon 5 has a new album, and he's been doing PSAs for "The Own It Project" (ownyouradhd.com), which is supposed to encourage adults who think they still have ADHD to take control of it. Basic info on it is here, and here he talks about what it was like to grow up with ADHD.

Howie Mandel: And OCD too, apparently. The actor/comedian/game show host/"America's Got Talent" judge is pretty open about it, I think to his credit. He talks about it here and in this clip from "Ellen."

Jamie Oliver: Per ADDitude. And I already think he's awesome for trying to make school lunches healthier.

Ty Pennington: Sorry about "The Revolution," Ty, but thanks for being so willing to talk about growing up with ADHD in, for instance, this article and this ABC News interview.

Michael Phelps: Mr. Mega Olympic Swimmer is making a pretty good case for my kid's swimming lessons. He told the New York Times about how swimming helped him find himself.

Britney Spears: *Sigh.* I'm inclined to argue that she's not helping the cause, but let's see how she does on "The X Factor." Anyway, this is per an anonymous source, so ... grain of salt? 

Justin Timberlake: Yet another grain of salt, because the only article I can find in which he says he has it is this one from Collider, and it's one sentence about him having ADD and OCD, and then a whole bunch of quotes about "The Love Guru," which I refuse to believe people were actually interested in even when it did come out. Every other mention is other websites citing this article, and then saying snarky things about Justin Timberlake. Memo to bloggers: I don't think he cares if you hate him.

Andres Torres: Not only does the Mets player (born in NJ!) speak out about his struggles, and how he improved as a ballplayer after he started actively managing his condition, but there's a documentary in the works about him and how he's an inspiration to others. See here for an interview and here for a preview of the film.

Shane Victorino: And we're back to the Phillies. He's also been speaking out about it, for instance here, as part of the same campaign as Adam Levine. Here's his PSA.

I'll add more names as I find them, should any more be findable. 

Mr. Personality

Kiddo has his problems but friendliness is not one of them. His nanny has been taking him to the pool practically every day, and since this is apparently where all the SAHMs are hanging out with their kids, he's met all the kids his age in the neighborhood. They've become buds. He even crashed a birthday party there last week. The mom said, "Oh, I should've invited him!" and offered him cake and ice cream.

I'm very glad for this, because at least some of those kids should be in kindergarten with him come September, and because repeated social interactions are part of what he needs to work on (he's roughhorsed a few times and gotten busted by the lifeguard), and because we're paying pool dues so someone ought to be taking advantage.

He's also in a group session now at OT, with a few other boys more or less his age, the idea being to get them all working on social interactions as well as the other tasks. I don't entirely know what they're doing in there, except I hear a lot of giggling and running and occasionally a thud into the waiting room door. His therapist says he's been showing good listening skills and has been pretty good about transitioning to different tasks. Of course, the session just gets him wound up, not tired out (he's the Energizer bunny in shorts and Lightning McQueen sneakers), so after the session yesterday, he and another boy from his group were still goofing around in the waiting room, and then kiddo pulled a classic wrestling move on him and knocked him over. Which didn't seem to bother the other boy in the slightest, but it bothered me a little. (Also: Where did he learn that? Seriously, he looked like The Rock for a second.) And then he ran out into the hallway while I was still talking to his therapist, which he does after every session, and then I have to give chase. So you could say the impulsivity is still there. Next time I'm just telling the therapist to text me and I'm hauling him out of there.

But no matter where we are, he thinks he's among friends. We get lunch together after the group sessions, because they end at lunchtime and the facility is a good 35-minute trip from home. He gets a grilled cheese sandwich; I get a salad. Yesterday we were sitting next to another family, a mom, two boys and (I assume) their grandma. And kiddo turned to them and just started talking. About why they'd been speaking Spanish (he seems to think it's just a fun language you hear on "Dora" and not one people actually speak). About his lunch. About my lunch. About his toy school bus. One of the other boys chimed in about his toys. Then they started trying to make each other laugh. They made funny faces at each other. Kiddo leaned back in his seat and bicycled his legs near his face. They made weird sounds at each other and laughed hysterically. The other mom and I kept looking at each other and grinning.

It did get to be a bit much when kiddo and the other boy started chasing each other around the chairs. But at least lunch was about over.

I'm beginning to worry that we have a Class Clown on our hands. But that's probably what happens when two smartasses marry. (Serves us right, in other words.)

The real issue is that he gets all worked up by the attention and takes whatever he's doing a half-step too far, and gets in trouble. But we'll see what happens in September, I guess.

Overdiagnose this!

So The Atlantic had an interesting article out the other day titled "Are You Listening? Your Child May Not Actually Have ADHD." First of all, ha ha ha, laugh riot of a headline. What do they title an article about blindness -- "Hey, Look At This"?

The point of the article is that, per the FDA, prescriptions for ADHD medications jumped 43 percent from 2002 to 2010, but a recent Penn State study of 1,473 ADHD, autistic and neurotypical kids found that the kids scored roughly the same on a diagnostic test as kids from 1983. Ergo ipso facto etc., the number of kids with ADHD is the same as in 1983 (their baseline info), so the soaring meds rate must be because ADHD is overdiagnosed. The end.

OK, really, one study? One study that didn't even just focus on ADHD kids? That used precisely one diagnostic test as the basis for its conclusion?

Hey, I'm perfectly willing to believe that there were just as many ADHD kids in 1983 as now. Except back then they were called troublemakers, problem kids, bad seeds or stupid, and were either kicked out of school or just failed out. I went through the public school system, and believe me, if you're at all different or quirky, if you have trouble learning the slightest thing in the standard pre-approved way, you get trashed for it, or you get ignored, or you fail. And for the record, I was a "gifted" kid in honors classes.

I didn't know any kids with ADHD growing up. But I did know kids who were smart and creative but struggled anyway, who were great in all classes but one, or who did the homework and learned the material but froze at test time and failed. And if anyone with an ounce of expertise had bothered to really look at these kids, maybe they would have seen something that explained the problem, and could have helped improve things. But hey, easier to write the kids off as stupid, right?

The article also says: "For one thing, it's become one of the world's most overdiagnosed diseases, increasing by an average 5.5 percent a year in the United States. There's no comprehensive clinical test for ADD and ADHD -- usually, doctors simply assess the disorder by intuition and rules of thumb."

Uh, no?  We went through a whole series of tests the first time we brought kiddo to the hospital, observing his motor skills, his problem-solving skills, his ability to transition, checking his reflexes and his hearing and his ability to make eye contact, in addition to the questionnaires his teachers and we had to fill out about specific behaviors. And then we did the questionnaires again the next year when his behaviors had gotten worse. I don't think the neurologist was diagnosing him by "intuition."

The writer's basis for that comment is an Atlantic article from April, titled "Study: Why Attention Deficit Disorder Is Over-Diagnosed." (Oh, and nice stock photo of a stoned-looking kid they used to illustrate it.) Seems a university study of 473 psychotherapists/psychiatrists in Germany determined that they were making ADHD diagnoses even though most of the "case vignettes" they were given didn't meet the diagnostic criteria. Says the article, "Many mental health practitioners seem to proceed heuristically and base their decisions on unclear rules of thumb."

So if I'm reading this correctly ... these doctors were given a piece of paper describing a mythical child's alleged symptoms, told to make a diagnosis, then knocked for diagnosing something that wasn't there?

Come on, my pediatrician won't even diagnose my kid with a cold unless I physically bring him in.
 
I'm sorry, but I don't buy this. These studies don't seem comprehensive to me. Not enough people participating, not enough variables taken into account. Way too skimpy to make sweeping conclusions like "ADHD is overdiagnosed!"

And I wouldn't get so worked up about it except I've heard "ADHD is overdiagnosed!" from a few people myself, usually in the context of "The teachers don't know how to discipline anymore and they just want the kids on meds to shut them up!" And I feel like the corollary to that is "The parents don't know how to discipline anymore and they're throwing a pill at the problem!"

Yeah? Here's the thing. My son has ADHD and he isn't on meds. Maybe he'll need them in the future, in which case we'll deal with it then. But clearly the automatic assumption with people is, ADHD = drugs. And then the next assumption is, ADHD drugs = zombie  children. And because I know some kids who are on meds, I know that isn't true either. The meds are supposed to focus them, not brainwash them.

I never like it when people make assumptions about things based on their own biases. I especially don't like it when it involves my son.

Good news, and maybe good news

Week 1 of Operation Nanny was a success. She's a sweetheart and she keeps him incredibly active -- they're basically living on the playground. She tired him out so much on the first day, in fact, that his OT ended the session early, on account of he was too wiped to do the exercises properly. We're a little in awe, because we can't remember the last time anyone tired him out (or outlasted him, for that matter).

So this does seem to have been the right move. He even still seems excited about kindergarten in the fall.

The bad part is that kiddette has figured out what's going on and appears to be jealous of her brother, because man is she acting up at school. She's pinching people. She's disobedient. She's giving teachers the Look of Death.

I'll explain: All of the women in my family can do the Look of Death (as DH calls it). It is a seethingly baleful glare that says, "Don't mess with me or I will destroy you." It is an especially intimidating look and I have occasionally found it useful. (No, not on DH. I wouldn't, and he's immune.) I expected kiddette to develop the look at some point, it being part of her heritage and all. I don't quite think I was expecting her to develop it at age 2. Umm ... hooray, she's a fast learner?

Admittedly, that look coming from a toddler is actually a little funny.

Anyway, her teachers find the look off-putting. One of them decided to give her a look right back. There was a stare-down. I kind of wish someone had taken video of this. I keep picturing it like a showdown at the OK Corral, with some Ennio Morricone whistle-twang music in the background. Fortunately, perhaps, for all of us, kiddette quit first and looked away.

I just can't wait until that child is 14. Oh, the slammed doors and the stomping feet and the teenage Look of Death, which will not be nearly as cute as the toddler version.

Aside from that, we got the test results back from the Brigance screening the district did a few weeks ago. Nothing incredibly detailed -- just the final score. The letter notes that they assessed for "reporting and printing personal data, gross and visual motor skills, counting, number readiness and uppercase letter identification," as well as checking for "handedness, pencil grasps, hearing and speaking." The categories were Partially Proficient, Proficient and Advanced Proficient. Advanced Proficient was a score of 80 and up for his age group; kiddo got an 85.5.

Well, OK. We knew he was smart. Because even if we hadn't figured that one out for ourselves, every single doctor or therapist he's ever been to has made a point of telling us that. It's nice to see that the testing reflected as much ...

Except that sometimes, per my research, districts will say to parents of an ADHD child, "But your child is smart. He doesn't need any special services." Completely overlooking the fact that ADHD kids tend to be very smart and creative. Their problems lie elsewhere.

Also, no breakdown by individual score means I don't know if he was doing well across the board, or if he was great during some parts of the assessment and entirely blew it on others. The highs and the lows could have averaged out to a good score, hiding the fact that there were any lows. Meaning there could be something he's not good at that he doesn't get help for, because hey, the final score was good, right? No problems here.  (This is also per my research.)

So I will probably call the school and ask if they have the full breakdown, and they will probably think I am crazy for complaining about a good score. C'est la vie.

In closing, I'd like to wish DH a Happy Father's Day, even though I think he's afraid to read this blog, because he's a wonderful husband and daddy and he's willing to do the grilling today when Grandma and Grandpa come up to visit. (His grill; I don't touch it.) I hope he has a lovely day.

Leaving school

At least temporarily. Kiddo's last day for the summer was Friday. Tomorrow a nanny will start. She's getting her degree in occupational therapy, she's interned at his OT facility, she's home for the summer and she seems good with kids. Kiddette even took right to her, and kiddette takes right to nobody. Normally she studies unknown people, poker-faced, until she's decided the person meets with her approval, but this time she was practically climbing into the girl's lap.

The nanny said she could work with kiddo on physical things and suggested she could check in with her sister (a teacher) on classwork to use. But mainly what I want is for kiddo to get a break. Because I'm sick of this scene:

ME: OK, kiddo, time to get up.

KIDDO: Where are we going?

ME: School.

KIDDO: Nooooooooo! I don't want to!!!! Can we go somewhere else first? Can I stay home?


It's a nice enough school, where he's been going. If kiddo were, as they say, "neurotypical," I think things would be fine. (Kiddette, in fact, is doing perfectly well there and will keep attending.) But he's not. And they just flat out don't know what to do with him. And when I make suggestions, they either don't have the staff to do it, need approval from corporate or don't do it consistently, across the board, and then it doesn't work.

For instance, the star chart, which someone there threw out after a week because they didn't think it was working. And never told us (or the director, apparently). So we spent most of the next week reminding kiddo to get more stars on his chart, and he kept telling us it had been thrown in the garbage, and we didn't believe him.

Eventually, we brought in our own dry-erase chart for him. But even still I don't know that it was being used properly, or consistently. What makes me think that? A couple weeks ago, kiddo was being spoken to about the chart, and he went up to it and erased the whole thing.

We started giving him an extra blankie to bring to school as sort of a comfort item, so he could have it when he needed to calm down. After he had some sort of spectacular meltdown at school one day, he explained to us that he'd asked the teacher for his blankie and the teacher said no. Could he have made that up? Sure. But we'd also been sending small toys and books in his backpack to use if he got enough stars that day; it's plausible that someone might have mistaken the blankie for just another prize, instead of something he could have whenever he wanted.

He was hitting teachers. Pulling their hair. Kicking them. Running around the classroom, not listening. Refusing to do classwork. All this while we were seeing improved behavior at home, in public, around relatives -- basically everywhere else except school.

And here's the bottom line: As I say, it's a nice school. They really made the extra effort to teach him to write, and he more or less can now, and I appreciate that. But what we really need for him is day care. Because we both work. I'd almost rather blow off the "school" portion and just focus on the day care. Otherwise, he's going to enter kindergarten in September already hating school and hating classwork and refusing to do things and hitting people, and we can't have that. I've read online other parents' accounts of their ADHD kids having school troubles, and a lot of what they describe seems eerily similar to what we've been dealing with, and these other kids are way older than 5.

 What everyone involved needs is a break. Before kiddo actually becomes the bad kid he's probably being seen as.

We did reserve his spot there for September, because kindergarten is half-day, and they do aftercare. I'm hoping by then we'll have made some sort of progress, and the break will have made a difference.

Because he shouldn't be flipping out this much about going to school when he's 5. Just no.