Thursday, February 23, 2012

Step 2: Working the phones

Kiddo needs behavioral therapy and occupational therapy. Well, OK. No occupational therapists within 100 miles of us accept our insurance. Less OK. Our insurer says we can apply for an in-network exemption, if we can prove medical necessity. So I've been calling around to see if any OTs are willing to work with that. There are two possibilities, if we can manage to quit playing phone tag with each other.

I've also been yelling at having a polite and cordial discussion with the hospital that diagnosed him. I asked whether they would be sending us a written confirmation of the diagnosis, since the insurer asked for it, the school district asked for it, basically everyone would like a copy, please. The hospital said, "Oh, well, we sent you a report in 2010. We don't send reports for follow-up visits."

I said, "Yes, but the doctor didn't say he had ADHD in 2010. She said she saw borderline behaviors that might be explained by the recent move and school switch. This time, she said he had it."

"Oh, OK, I'll leave a message for the doctor."

A few days later I got a call from a different staff person. "You know we don't send reports for follow-up visits ..."

"Yes, but he wasn't DIAGNOSED in 2010 blah blah ad nauseam."

"Oh, that's not in the message here." Pause. "And I see nothing has been sent to the pediatrician's office yet, but it was supposed to be sent."

"Can I ask a question? Why does it feel like there is all this paperwork that is supposed to be done that isn't getting done? Why is it that I have to say the same thing to multiple people just to get what I want?"

Injured tone of voice. "Well, I said I'm going to send out the letter."

Look, I get that the hospital staff is probably massively overworked, and I'm sympathetic. But I'm still going to be dragon lady if I have to, because he's my son, and that's my job.

Also: Still waiting for the letter.

The folks at the school district have been helpful. Apparently there are two routes here: a 504 plan, in which they would provide certain services and classroom modifications for kiddo, and an IEP, which is (as I understand it) more involved, requires a special education teacher and can only be approved after an evaluation by the district's Child Study Team. The 504 coordinator wasn't sure which category we fell under, but she said she would check into it.

There are two behavioral therapists on our insurance in our immediate area, and one isn't accepting new patients. Fortunately the other is, so that's set up for next week.

When not on the phone, I've been studying. I found CHADD's site, which is seeming helpful. My friend C. recommended an instructional video called "The F.A.T. City Workshop," designed to teach parents and teachers what it's like in the classroom for kids with learning disabilities. It's pretty interesting, and also pretty long, which is why I fell asleep the other night trying to watch it all, laptop open next to me on the bed. I also found this site, which seems pretty informative. I say "seems" because geez, I've got a lot of reading to do here. Not even including the book my parents sent us by the American Academy of Pediatrics. (Got it, thanks, guys.)

And how is kiddo through all this? He went to Defcon 1 tonight because the pasta he's decided he doesn't like was touching! his! plate! He calmed down noticeably when we told him he could finish his tantrum in his room. And then he ate all his asparagus. I have trouble getting too worked up about the picky eating when the only thing he eats off his dinner plate happens to be the vegetable.

He still thinks it's hilarious to run away instead of going to the bathroom, or instead of washing hands for dinner. Or to run into his sister's room when he's supposed to be getting ready for bed. Or just to run around randomly. Fortunately he's a little better about running in parking lots.

And he remembered how to write "music," and it even looked like a word. So ... tiny point for me?

Thursday, February 16, 2012

And then I became ... an advocate

Since people keep telling me that I'll be a good advocate for my son. It's flattering, but it's also beginning to feel like a T-shirt slogan. Or like a thing I add to my resume, under "extracurricular activities."

Anyway. We almost didn't need to have kiddo physically in the office for the appointment, since the doctor was mainly going over the results of the questionnaires we and his teachers had filled out, referring back to the tests she'd run at his first visit in 2010 and asking us to describe his behavior. Like his way of running around in the parking lot during school pick-up. Or the tantrums he throws when we deviate from his routine by, say, asking him to brush his teeth first instead of his sister. Or the other tantrums he throws when she won't play with him to his liking. Or the big meltdown he had at school last week or so, when he asked other kids to help him clean up the Legos (that he'd been playing with by himself) and no one did.

He hung out in her office while we talked, seemingly oblivious, playing with a bin full of toys they'd brought in.

She was briefly alarmed when we described his issues with eye contact -- as in, he avoids it -- but he doesn't show any other signs of Asperger's so she let it go. Basically, she concluded, yes to ADHD, with possible signs of OCD too (which would explain why he needs his fuzzy green blankie folded in thirds across his pillow in order to go to bed, and has been known to flip out when the blankie isn't folded correctly). "It's a complex case," she said a couple of times. Well, just what I wanted to hear.

She also was a little antsy -- mentioning several times how she was late for her next appointment -- but since we'd been forced to switch the appointment to a different day to accommodate her fabulously busy schedule, I was not exactly dripping with sympathy. You're overbooked, your problem. Not my kid's.

We're supposed to start behavioral therapy and occupational therapy, just as soon as we can find people who do such things, and she promptly handed us off to a social worker who would give us a list of numbers to call. (I guess they throw you a diagnosis and then you're on your own.) As we were walking down the hall to the social worker's office, she said to us, "Parenting him is going to be a challenge!" Well. Me from four years ago thanks you very much for that timely warning. Perhaps next you'd like to warn me about what the weather will have been like last month?

The director of our preschool, whose son also has ADHD, suggested we contact the school district's Child Study Team now to see if there's some way they can start working with us before he enters kindergarten; apparently they have occupational therapists on staff. Her point was, don't wait till July or August to call because then they'll never get back to us. She also said to make sure they know he's been "classified" as ADHD, and also make sure the doctor specifically uses that term in the paperwork. (She's really been most helpful through all this.)

The doctor did suggest really emphasizing positive reinforcement -- which we do already, with his daily star chart -- and getting him to quit running off by making a game out of it: Say "Freeze!" and reward him if he does. DH quickly worked out rules for our new game; if we say "Freeze!" and he freezes, he gets a point. If he doesn't, we get a point. Best of 7 wins, and the winner gets a cookie. DH is keeping score.
 Since he'd already missed his class Valentine's Day party for this appointment, we took him to lunch (oh thank Heaven he eats grilled cheese sandwiches now and we don't have to make waiters' heads explode by ordering them cold), and then I took him to the mall to use some of his accumulated Toys R Us gift cards. Now I knew this was dicey, since a mall can be a fairly overstimulating place even if you don't have ADHD. But it was the middle of the day, so, worth a shot. We did have to play a few rounds of "Freeze!" but it worked more often than it didn't. He was sweet enough to insist we also pick out a toy for his sister. Then -- and I knew this was even dicier -- I took him to H&M so I could clear out a gift card of my own. (Really, I would not have done this if I hadn't already known what I wanted. I am the world's slowest shopper.) He was ... mostly good. Aside from playing hide and seek with me in the clothing. To get him to stay in one place while I paid, I made him put his hands on the counter and count to 50.

"I got to 50!" he announced.

"Well, I'm not done paying yet. Keep counting."

The teen cashier, who'd previously looked a little annoyed at his run-and-hide shenanigans, now looked like she was trying not to laugh.

The mall has a kiddie play area at one end, with little slides and ride-on animals and things, and kiddo had spied it from the upper level so we walked over there. He was fine at first, and then another family walked in, with a girl a little younger than kiddo and a toddler. Kiddo immediately latched on to the girl, introducing himself, but was perplexed when she didn't do the same. He chased her around, calling out, "What's your name?" then turned to the other parents in bafflement: "Why won't she tell me her name?" They thought it was funny at first, but he kept at it, clearly freaking her a little bit, and I had to yank him away. (The other family quickly left.)

"You can't make people be friends with you," I told him.

"But I want her to be friends with me," he said plaintively.

I can tell that this is going to be the worst part of the whole thing. He wants to play with other kids so badly, but he doesn't get when he's coming on too strong, or being too demanding, and he's going to scare kids off. "It's going to keep breaking my heart, watching him get his heart broken," I told DH later.

Maybe that's something a behavioral therapist can help with. You know, once we find one.

Tuesday, February 14, 2012

"He meets the criteria"

You know, if my kid was going to score in the 90s on something, I'd rather it not be the hyperactivity scale. *sigh* More later.

Monday, February 13, 2012

Nearly test day

Otherwise known as, the day we figure out whether kiddo has ADHD or just secretly enjoys screwing with us. That day was actually supposed to be Wednesday, but the hospital called last week and said, "Hey, the doctor wants to know why you're coming in again, and oh also, can you reschedule the appointment?" After a day of phone tag and snottily demanding an explanation because of the inconvenience, I got, "Oh, the doctor has to go to a meeting then." Oh, and that's our problem why?

It's not even the inconvenience, although yes, switching to a Valentine's Day appointment is an inconvenience, and not exactly the romantic outing I had in mind. It's feeling like a chump because I made this appointment in November and that still didn't guarantee we'd actually get it, clearly. It's feeling like my kid's potential problems are not even in the least interesting to the doctor. It's feeling like this is the level of total indifference we're going to be dealing with from everyone, till the end of time, if kiddo really does have it. Or else they'll say, hey, don't give your bratty kid so much soda, you crap parents, and then I will grab the nearest can of Coke, shake it vigorously and spray it all over that person, and then have to foot their cleaning bill.

I suppose the bright side is, it's one day less to wait. And restaurants are awful on Valentine's Day anyway. Not to mention every other holiday and pseudo-holiday. The last time we went out to eat on Mother's Day, at a regular restaurant of ours even, the service and experience were so godawful I swore we would never do it again.

I haven't been doing much ADHD-related research lately because I didn't want to get obsessive about it (yet). Still, of note recently: This report from NPR (courtesy of cousin H.), which notes that an elimination diet alone can't cure ADHD but can help reduce symptoms -- and frankly, eating more fruits, veggies, whole wheat and low-fat dairy is good advice for anyone. Getting enough protein in him has actually been a bit of a worry, because he doesn't like deli meat, rarely eats roasted chicken and can't have peanut butter at his nut-free school. (Though he does eat PBnJs on weekends, which feels a little subversive -- like his teachers are going to ring the doorbell and complain.) I've been experimenting with Greek yogurt, which both kids seem to like, and it's less runny than the regular kind, so kiddette is less likely to spill it all over her outfit. Also chia seeds, which are supposed to be a good source of protein and fiber and a gazillion other things, and no, we are not eating our way through a Chia Pet -- I got some flavored varieties at a health food store. The kids seem indifferent.

Seriously, though, every time I read any kind of article about improving heart health or brain health or weight loss or, I don't know, spleen health, all the articles say the same thing: Cut out the processed crap, eat more fresh produce, go easy on red meat, opt for low-fat dairy. Etc. etc. etc. How many times do people need to hear it?

I'm not that militant -- I did just let kiddo have a "burger sandwich" and fries for lunch, as a reward for surviving his dentist appointment. But that's a treat, not his regular diet.

Meantime, he's not any better at that whole impulse-control thing than he was before. We went here over the weekend -- it's a nice little museum -- to check out the Lego art exhibit, which yes, was pretty cool. Kiddo is fascinated by Legos; they're the first thing he reaches for when he walks into his classroom. He was thrilled by the exhibit. And by the other exhibits. And by all the rooms to run around in. And by all the people. Which would be why he ran from the basement play area all the way up to the second floor to see the train exhibit again. DH had to run after him the whole way, and DH is 6'2'', which means he can't duck and weave his way through crowds too well. So he wasn't especially happy with kiddo, and we started to leave. And then kiddo ran off again. I chased him down, thoroughly yelled at him and got him out of there.

I'm never completely thrilled with yelling at him in public, since that's probably one of the 1,000 things parents are Not Supposed To Do anymore on account of it wrecks the poor child's self-esteem. But you know, sometimes you're a little entitled.

And now, a point in his favor: We went to Trader Joe's the next day and he was a perfect little angel. Didn't run away, didn't play his usual game of hide-behind-the-food-displays, didn't whine about riding in the cart. Why? Because my friend M. came along, and kiddo chattered away to her the whole time about all the foods there he liked. Clearly, all I need to do to get him to behave is bring company. Do people ever do food shopping playdates?

So we'll see what happens tomorrow. It'll be nice to have some sort of answer. I think.

Wednesday, February 1, 2012

And he stayed seated for the whole movie

Which was the most impressive part, to me. Kiddo can't even stay seated through dinner. Or breakfast. DH took him to his very first Yankee game a few months back, and they spent more time strolling around the stadium than actually watching the game. (Although the Yanks lost, so arguably that was the right move.)

This was part of the reason I waited so long to bring him to a movie theater. Because even the five people at a half-empty matinee showing are going to get annoyed if your kid starts bopping up and down the aisles. Hey, I'd be annoyed if I were one of those five people.

The other reason, of course, being that it needs to be the right movie. As in, not a total piece of unredeemed garbage. Like, say, a Chipmunks movie. (Sorry, Jason Lee.) Or a Smurfs movie. (Sorry, NPH.) Or a Yogi Bear movie. (Sorry, Tom Cavanagh. No, actually I'm not.) Because I have to sit through it too, and I swore years ago that I wouldn't waste movie-theater money on bad movies. This is because I saw "Godzilla" in the theater and I still want Matthew Broderick to give me my money back.

"Beauty and the Beast 3D" seemed workable. Not so much the 3D, but because it's a classic, and the animation is well done, and oh all right, I love the movie. I know people freak about the whole Disney princess thing but 1. I don't see why that would apply to boys and 2. I love the movie. Belle is a brunette who is smart and loves books. In other words ... she's me! Well, me if I really, really liked yellow.

 So we went to the movie. He didn't quite get the purpose of the previews. (Considering what some of them were, neither did I.) Nor did he get the point of the special glasses, and refused to wear them. We had this whispered conversation about five times during the movie:

"Sweetie, you have to wear the glasses or you'll miss stuff!"

"No, I don't want to wear the glasses!"

And eventually I gave up. (To his credit, he really was whispering, so at least he listened when I warned him early on to talk quietly.) Though they didn't add too much 3D to the movie -- layered backgrounds, mostly -- so it was possible to watch minus the glasses.

And the movie is still great, like a lovely Broadway musical. Kiddo seemed to get into it. Near the end, he whispered, "Is the Beast dead?" And then a little girl in the audience asked her mommy the same thing, sounding near tears. Poor dear.

Kiddo reported afterward that he liked Beauty, and Mrs. Potts, and Chip, and also the part where Beauty throws a snowball and it hits the Beast on the head and she laughs at him. Figures the snowball fight would catch his eye.

So I'm going to declare our first moviegoing expedition a success, and look forward to the next one. Which will not be "Phantom Menace" in 3D. Jar Jar in 2D is bad enough.