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.

Kindergarten: The preview

So our district does something called Countdown to Kindergarten, in which the kiddies get an hourlong tour of the school and the classrooms, get to ride a school bus (the first week) and get to have a peanut-free snack with the kindergarten kids (the second week). This seemed like a good thing, so I signed kiddo up.

Incidentally: I am totally in favor of kids with peanut allergies not dying, but planning lunches and snacks around said allergies can be frustrating. In that kiddo is supposed to be getting more protein, and nuts and peanut butter are among the few types of protein he'll willingly eat. If I could get the kid to like a turkey and Swiss on whole wheat, it would be less of a pain. Also (said the school nurse at orientation) you can't bring cupcakes or cookies or whatever to the school unless you can vouch for every single ingredient in them, and you're supposed to call ahead 48 hours before you're planning on bringing in the whatever so that they can pull the allergy records for the class and see what you need to watch for. Lemon ice is always fine, apparently.

If it seems like parents are more neurotic than they were a generation ago, it's because most parents a generation ago could give their kids PBnJs for lunch -- or bring in cupcakes for the kid's birthday -- without worrying about accidentally killing another kid. Just saying.

The night before Countdown, I lay awake and worried. Because of the school bus. Kiddo has had a tendency to run in front of vehicles lately. I imagined him getting away from the coordinator, running circles around the bus, the driver not noticing ...

He was of course thrilled to be going to the big school, and while we were waiting in the office with his usual security-blanket Matchbox car, another little boy came in with his mom, and while the other mom (nice) and I chatted, the two of them instantly bonded over the car, rolling back and forth to each other across the floor (until they started to throw it to each other and then I had to step in).

The coordinator turned out to be a PTA member who's been doing this program for years. I quietly explained to her that I knew parents weren't supposed to stick around, but that my son has ADHD and is liable to run, especially around buses. She said no problem, we'll keep an eye on him. And then promptly made him the line leader, so he would stay right in front and they'd know exactly where he was. Smart. He was delighted to be line leader, even if he didn't know what it meant.

They all trooped off, I ran errands for an hour, I came back, he was fine. The coordinator explained to me that her teenage son has it too, so she knew how to handle it. The more I talk to people, the more ADHD kids I find. Just never kiddo's age, I guess.

Week #2 was less dramatic. I packed an apple and a yogurt smoothie and sent him off. He was line leader again, and he had a good time. 

So at least we know he can handle kindergarten for an hour at a time, right?

They also did kindergarten screenings last week -- apparently this is new. They use the Brigance program to see if kids are gifted or have learning disabilities, or anything else they should worry about, and then the results help them determine the makeup of the classes as well as whether any kids are going to need extra help in anything in September. It seems like a good idea to me, but then we already know our kid needs help (and I remind every school official I meet that he's already approved for a 504. Because I am that mom). I'm genuinely curious to see what the test comes up with. The parents had to wait in the lobby while the kids were tested, so I can't say what they were doing, but the survey we were asked to fill out had questions like, "Does your child know his first and last name? Can he stand on one foot? Can he count to 10? 20? 30? Can he play well with other children?" That sort of thing. Basic knowledge, basic social skills. They'll send us the results. The official running the testing did say he'd done well, and seemed to find him quite charming, as many adults do.

Of course, he's always charming when he's meeting new people or something interesting is going on. Less so when he's bored, upset or being asked to do schoolwork.

I think the next thing we're supposed to worry about is buying all the supplies on the checklist, but I am so waiting until August on that one.

The gym doctors

That's what kiddo calls his occupational therapists. (His behavioral therapist is known as "the talking doctor," or "the doctor with the play room and the three cars"). I can understand it, considering the facility is about the coolest looking kiddie gym I've ever seen -- and I've been to a few kiddie birthday parties at this point so that's saying something. There's a rope swing hanging from the ceiling. There are giant pillow-type things you can climb on. There's a mini ball pit. There's a separate room with a rope ladder leading to a series of room-length hammocks that you are meant to climb into and out of. There's a fabric swing also hanging from the ceiling that looks a little like a giant kangaroo pouch, and when kiddo nestles in it, only his face peers out. All the floors are padded, and shoes are not allowed.

He goes twice a week now. They're working on strengthening his core, and teaching him to breathe properly, and helping him with fine motor skills. He loves it. Hell, I'd love it. I keep wondering whether I can get some occupational therapy too. By which I mean the rope swing.

Here's the routine: We hang out in the waiting room for 40 minutes or so while he does his thing with his therapist (he has a different one for each day; they're both quite nice), then for the last 10 minutes or so, the therapist brings us in to discuss his progress and also so any younger siblings can play on the equipment too. Which is why when I ran in at the end of the last session, having come from work, I found kiddette and kiddo both clambering through the giant hammocks, giggling madly.

Generally the parents don't talk to each other in the waiting room. I'm not sure if this is customary. Do people not want to discuss with anyone what their kid has? Or would they just rather check email than chitchat? I bring a book. Sometimes another parent and I will smile at each other if our kids are socializing post-session.

By which I mean, if my kid is being his normal self. It's both adorable and a little exasperating that he thinks every single other person on the planet should be his friend. The last time I brought him to the playground, he kept sidling up to the teenagers shooting hoops so he could tell them all about his jump rope skills. The teens were pretty good-humored about it, but still. I tried explaining to him that those kids were way too old for him, and then he would manage to jump-rope their way again.

So whenever we go to therapy, if we happen to be riding up in the elevator with another family, he will promptly adopt that family and tell them all about what the elevator does and who he is and what he's doing there and he'll run down the hall with the other kid and explain to the kid how to open the door to the facility and then they'll run around the waiting room together and etc.

I swear, he's either going to be a politician or an actor. Or maybe a tour guide.

His therapists -- sorry, gym doctors -- have suggested some simple things we can do with him at home, like blowing bubbles or drinking a smoothie through a straw, to help him with his breath. Turns out he loves yogurt smoothies. They also suggested letting him use a straw to blow bubbles during bathtime. That was quite a hit.

They've noted that he likes to burrow under things, or wrap himself in things, and say that helps him ground himself and we should encourage it. So if he's sitting on the couch, we surround him with couch cushions and put a blanket over the whole thing. He seems to like that.

Also, exercise is good (obviously). So most mornings, we do push-ups, then a few yoga poses. He likes Warrior One. I want extra credit for doing all these things while already dressed in my work outfits, which are not push-up friendly.

The gym doctors keep saying he's doing great and that this will help him improve his behaviors. We'll see, I guess. At least he's enjoying himself.

Needing a vacation from the vacation

I mean, I suppose we should've seen it coming. Kiddo goes wonky when off routine. But you get in vacation mode and you start to check out mentally and in between the packing up clothes and the did I remember sunscreen? and the oh shoot is the toaster unplugged? and making sure you have directions and all that, remembering your child has ADHD and will not be in vacation mode doesn't necessarily top the list. Apparently.

We were at one of those adorable old-fashioned family resorts where everyone eats in the big dining room and there are games and a lake to play on and the staff puts on a show at night. Think the resort in "Dirty Dancing," except, you know, no dirty dancing. Though there was a Mardi Gras parade through the dining room featuring Spider-Man. DH's family used to vacation there every year, and we were back for Grandma's birthday (and the staff remembered them. Impressive).

But there was too much going on, I guess, or too much to look at, or maybe everything smelled too different, who knows. All of kiddo's "behaviors" ramped up to the nth degree.

First, kiddo figured out how to open the cabin room door. And ran out. Repeatedly. Kiddette frequently followed, because she thinks everything her big brother does is cool, especially when it's not. One or three of us would have to sprint after them and catch them. Preschoolers: Faster than you think.

Then, mealtimes. At every single meal, kiddo would push off from the table and run. At random. For no good reason. One time he got all the way out of the main building, into the parking lot and in front of a (parked) shuttle bus. Needless to say, this freaked us out a bit.

Also, bladder control. He had three accidents in two days, twice because he just wasn't noticing that he had to go. The final time wasn't entirely his fault -- he did ask to go potty after dinner, and I hustled him down the hall to the restroom. Which, for the first time all weekend, actually had a line in it. And the people in the stalls must have been writing their memoirs in there, because those doors stayed good and closed. And I pleaded with kiddo to hold it but I knew it was a lost cause, and eventually he just couldn't anymore. The old biddies in back of us clucked sympathetically and I had a brief desire to tell them where they could stick their sympathy.

And then I had to haul his wet self back to the dining room to grab the bag where I was keeping extra pants and underwear, and then haul it back to the restroom to change him (again), and this was the point where I finally lost it entirely and yelled at him, and became utterly convinced that we were never going to be able to take a vacation with him anywhere ever.

Also, they had to sing Happy Birthday to Grandma while we were in the bathroom, because they couldn't hold up the kitchen staff.

Four adults. One ADHD kid. And we couldn't keep him in line.

We did discuss the issue with his therapist this week, who suggested in future to arrive at the destination a day early, then reestablish a normal routine with him, just low-key going about the day, without immediately jumping into sightseeing or other activities. That would reset him, I guess. Bottom line is, there is no vacation from his condition. We don't get to pretend he's a normal 5-year-old.

The therapist also said quieter, nature-centric spots would be better for him than amusement parks, because that would be way too much overstimulation. Disney, for instance, would be like Vegas to him. (So much for hitting Disney next year.) I don't mind nature-centric spots. So at least that's an option.

Still, I don't think I'm in any hurry to take another vacation.

My advocacy week

I had not one but two research-related events last week, both of which I attended after work, meaning DH had to put the kids to bed. Plus my regular Pilates class another night. DH is a trouper and a half.

First was a workshop on writing an IEP, courtesy of the Statewide Parent Advocacy Network. As of now, kiddo's district says he'll fall under a 504 plan, not an IEP, when he starts kindergarten in the fall. However, one of our sources in these matters says 504 plans are "for shit." So in case that's true, I figure we better be ready to push for an IEP.

A 504 (as I'm understanding it now) specifies certain accommodations they can make in the classroom so that he can focus on learning the material; an IEP starts with the presumption that the child needs extra help educationally in order to learn the material. An IEP is educationally based; a 504 is based in civil rights law. An IEP also has more legal authority behind it and offers more services.

On the other hand, IEP protections end once the child is out of school, but 504 protections extend to the workplace in adulthood, assuming you're willing to disclose what you've got. So .. yay?

The workshop was pretty good, once I found the place. On account of I got lost (my specialty) and there was no number listed on the front of the building, which as far as I'm concerned, is a mean trick to pull on someone who's prone to getting lost. Fortunately they started a few minutes late.

The woman running it was quite nice and ready to answer whatever questions got thrown at her, and there were many. She also mentioned that her son, now in his 20s, is autistic and non-verbal. And I bow down to her, not just for dealing with a much more intense situation than what we've got, but for being so upbeat about it. I am so very much non-upbeat. I wonder if she gives workshops on that.

Actually, every other parent (and grandparent) there was dealing with a more stressful situation than me. One child who's not only non-verbal but runs into the street when he gets off the school bus, and the school is stalling on helping him not get run over.  One child who was abused at school, regressed and is now home-schooled. 

What's frustrating is that every time I hear from another parent or read comments from parents of special-needs kids online, it's always the same thing: The school doesn't care. The school won't help. The teacher thinks he's lazy/making it up/badly parented. It's so clear you have to fight for everything, even if what you're asking for is legally mandated.

I have no problem fighting for things, of course. But it is an annoyance, and cuts into my lunch break.

Anyway: An IEP should maintain high expectations, not lower standards; should be as specific as possible (will learn 20 new words this marking period); should specify the child's strengths, needs and services that will meet those needs; should include extracurricular activities, since kids are entitled to participate in them; should specify which skills the child needs to develop in order to participate in the school community and make progress; should mandate the child practice a skill X times a week so that he doesn't lose it; and should specify how data will be collected in order to measure progress. Also, there should be regular progress reports. And apparently the average IEP is 40-100 pages long. (Single-spaced?)

 And in case I needed another reminder to ease up on my kid, one of the several teachers present for professional hours had brought her son along. He looked to be about 3 or 4, was completely adorable, and basically treated the whole room like his own personal playground for the entire workshop. He sent his race cars spinning across the floor. He ran around and climbed on chairs. He kept yanking magazines off the shelf in the back and dropping them on the floor. He took an especial liking to me and kept trying to share his lollipop with me. Periodically his mom would try to rein him in and he'd freak, and then she'd let him bounce off again. Everyone in the room was pretty tolerant of the whole thing, but I did keep thinking: Geez, my kid's got ADHD and he'd be grounded till puberty for pulling this stuff. After the workshop ended, the teacher made a joke about how she'd get a babysitter next time, and because I'm nice, I didn't say, "Yeah, you think?"

... And then came the other event, the regular meeting for a certain support group. You'll note this time the group is nameless. This was the second meeting I was attending, by way of giving them a fair chance. Here's how the first meeting went: It was me and the chapter coordinator and her son. Period. For an hour and a half. While her son bounced off the walls, she and I chatted, comparing notes a little bit. I kept sneaking glances at the door: Really? No one else is coming? She didn't seem to have any material prepared. In fact she didn't have any handouts from her organization to give me, and mumbled something about how she'd bring them next time. (I'd already downloaded them.) She explained how she's been fighting to get her son a 504 but that it probably won't happen this school year. She also seemed to take a perverse pride in how her son was just like her, and how they could stay up all night together, since neither one of them sleeps well.

Oh yeah, did I mention she also has ADHD?

I don't mean to trash her -- she was perfectly nice. It's just that I blew off dinner and seeing my kids before bedtime so that I could come to this meeting, in the hopes that I could get suggestions on resources (I was still trying to get OT lined up at that point) or suggestions on dealing with kiddo, or hell, friends for kiddo. Because wouldn't it be good for him to be around other kids like him? What I got was an hour and a half of awkward small talk with one person. I hate small talk.

As she was closing up the building, she remarked that she'd thought a clinical psychologist was going to be giving a presentation tonight, "but I guess that's next month."

Argh.

So despite everyone I shared this story with finding it hilarious (except DH), I thought, all right, maybe it was just an off month. It's the only local chapter around here. I'll try again.

I got held up at work and showed up half an hour late. And it didn't matter, because it was the chapter coordinator, one other woman ... and me. (No son this time.) The other woman had the same baffled look on her face that I must've had. They were discussing apps that were helpful for ADHD. The chapter head uses one of those computer pen things for her job, so she was showing us how it worked ... kind of. She forgot the USB cable. And she was showing us things on her laptop ... sort of. When the connection worked.

 I volunteered a couple of apps I love, like Evernote. But that's a good one for everybody, not just ADHDers.

Anyway, the meeting devolved into the chapter head chatting about her son, and how she hadn't slept in two days, and how the school said he couldn't have a 504 until third grade, which even I know is bogus. And how she'd been fighting with the district, and at the last meeting with them, she handed them her business cards to give to the other parents, "for when you screw them like you screwed me." She was proud of that statement. I tried not to cringe.

No clinical psychologist showed up. Obviously.

The other woman and I chatted in the parking lot after the meeting. It was her first meeting, and she'd had to get a babysitter for it, and it was a long drive for her. She wasn't sure it was worth it. Both of us were boggled by the total lack of people. "There have to be other families dealing with this around here, right?" We asked each other. "Where are they?" We exchanged info, figuring we could at least talk to each other about things.

So I think I'm going to write to the national arm of this group and say, Really? This is the best you've got for me? Because I'd like to join up, but I'm not paying dues for this.

So, one useful meeting, one not-as-useful meeting. One out of two ain't bad, right, Meat Loaf?