Eye surgery part II, or: Haven't we done this already?

This time, of course, it was kiddette's turn, for her partially blocked tear ducts that have been regularly making her look like she has pinkeye, even though she doesn't. Ick. Also: How can you teach someone to apply eye makeup when her eyes are always crusted over? Thinking way too far ahead, I know.

We waffled a bit on whether to do it, because this didn't have the medical urgency of kiddo's strabismus, but after needing to give her antibiotics three times in two months, we decided it was in fact urgent enough. Otherwise, every single time she got the least bit congested, her eyes would suffer. (The name of the procedure is balloon catheter dacryocystoplasty, which is such a gibberishy phrase that even as the opthalmologist was about to do it, I couldn't remember how to pronounce it.)

We grumpily dragged ourselves out of bed and hauled her over to the surgery center at 6:30 a.m. She, of course, was completely, cheerily awake, despite no breakfast and no idea what was going on. That's kiddette for you. Then we sat around and waited because they were running behind. Kiddette studied the newspaper over my shoulder, climbed onto my lap, then lowered her head for an upside-down look at the other people in the waiting room.

We got her checked in and weighed, and waited some more, except now I was in the fabulous white zip-up jumpsuit they make you wear when you enter an operating room. Not my best look, really. I noted to DH that now I knew what he felt like after kiddette was born, and the staff made him wear that thing to see me. Except the shoe bootie things actually fit me. He only got about half his shoes into them, and then they ripped. You'd think those things would come in husband size.

More than an hour after surgery was supposed to start, kiddette and I walked down the hall to the operating room. Well, I walked. She took a few steps and went jump jump jump jump!, then a few more steps, then jump jump!, then a few more steps ... one of the nurses fell into step with us and we lifted kiddette by the arms so she could get a good jump in.

We got her sitting up on the operating table and she went into serious poker face mode, studying everyone around her. They were all quite taken by her perfect posture and her calmness. I had to go into my usual explanation about how she's always like this when she first meets someone, or encounters a new situation. Eventually the sleep mask began to kick in, and they tried to lower her down to the table, and she resisted -- not because she was scared or upset. Because she didn't want to lie down.

The opthalmologist walked me out, asking if I was OK. Well, yeah. I'd already been through this anesthesia thing with kiddo. I wonder sometimes if I'm supposed to be more hysterical than I am, just to fit in with the other moms.

She also raved about kiddette, how poised, how good she was, etc., noting that most kids in that situation scream and cry and carry on. (For the record: By the time kiddo realized what was going on, and started to freak out, he was asleep.) I'm telling you now, if this kid ever goes into politics, we are doomed. She's smart, she's tough, she fears nothing, and she just charmed the pants off a room full of medical staff. And she has big blue eyes.

They were done in less than an hour. Now kiddette was unhappy. As would be expected. But they gave her some Tylenol, and some apple juice, and some more apple juice, and then an ice pop, which was her first one ever but she got the hang of it pretty quickly and hoovered it down. The nurses agreed her appetite seemed to be fine, gave her kiddie sunglasses and sent us home.

We have two different kinds of eye drops to give her, four times a day, for a week. Fortunately what with all the fake pinkeye, she and I are pretty well versed in the giving of eye drops. I balance her head on my legs, aim and fire. I say, "OK, now go blink blink!" And she says, "Blink blink!" Which is a little bit of a "Say goodnight, Gracie" moment, and makes me giggle, which is why I keep doing it.

At any rate, she seems entirely back to normal today, what with the bouncing off the walls and the gobbling of food and the attack-hugs she's so good at. So I'm hoping this is it for kiddie surgery. Eye surgery, anyway. I guess there's no guarantee on the other body parts.

Book reviews: ADHD edition

I've been reading up on this whole ADHD thing, because studying is something I'm good at. The CHADD website has been useful, as is the website for ADDitude magazine. Plus I'm still going through the American Academy of Pediatrics' book on the subject. So I thought, I'm learning all this stuff, but what about kiddo? What does he need to know about what he's got?

ADDitude, in a special downloadable supplement, recommended two books for his age group, and I am not kidding, one of them is called "Shelley the Hyperactive Turtle." This sounds like a junior-version parody of an After School Special. And yet it is real. The hyperactive turtle in question also looks an awful lot like Franklin the Turtle, but since the book is from 1989 originally, I'm assuming Franklin, Bear and Beaver never bothered to sue. 

If you can get past the title and the Franklin-ness, the book is fine. It pretty accurately describes what a hyperactive, uh, turtle would be acting like, and goes through the process of Shelley going to the doctor, getting diagnosed, getting therapy and medication. It's written on a level kiddo can more or less understand, except he seemed way too amused by the early scenes of Shelley acting up. I hope Shelley wasn't giving him ideas.

The other book is called "Eddie Enough!" I liked it better -- more detailed writing, nice black and white illustrations -- even though it's written slightly above kiddo's head. The main character is a few years older, and is describing things like art class and lunch in the cafeteria and going to the nurse's office, none of which kiddo is familiar with yet. And he was, again, way too amused by Eddie's misbehavior. Even more amused by the other characters making fun of Eddie. I guess that whole empathy thing comes later?

I will say I think the author isn't quite managing to sound like a third-grader. "To make a long story longer, as Grandma would say ..." doesn't scream "third-grade narrator" to me. But it's a minor quibble.

The plot otherwise mirrors the other book -- kid can't slow down, kid has trouble in school, kid gets help from sympathetic adults, kid goes to therapy and gets medication, kid is happy. Plus it has a nice little postscript from Eddie about how if you're reading this book, then you or someone you know may have ADHD and you can get help for it, just like he did. Which yes, I've also been reading to kiddo, for whatever it's worth.

I think my only real quibble with either book is the medication, just because kiddo doesn't happen to be on any right now. Since I know it does help a lot of kids, I'm not opposed to going with medication if it becomes necessary (though I should note, his therapist is), but until and unless we get to that point, I'd hate for him to think he needs a pill just to be like Shelley and Eddie. Though so far he hasn't noticed that part.

Still, this is a good starting point. He even likes the books. Not as much as he currently likes "The Cat in the Hat," because he seems to be overidentifying with Thing One and Thing Two (for some reason). But he likes them enough.

Stress and tantrums

So I hit the garage door with my car the other day. That may not be the most embarrassing thing I've ever done in my life (riding halfway down a hill on my friend's bike before realizing I didn't know where the brakes were -- that still wins), but it's at least top five. As they say on "Thomas the Tank Engine," "Luckily, no one was hurt." Except, you know, the garage door. A little bit.

It had been, let's say, not the best week. Work stress. Kiddo stress. Hearing nothing from the OT's office. Feeling like I was getting funny looks from people every single time I brought him out in public and he ran around, or acted up, or blatantly blew off something I said to him, or got in some kid's face. I've been thinking I should have a T-shirt made that says, "I'm Not a Rotten Little Brat, I Have ADHD" and that way I can just point to the T-shirt and shrug.

Which is a stupid idea, of course. That's way too long to fit on a T-shirt.

On top of it all, I was exhausted for some reason -- neither caffeine nor Snickers bars were waking me up. So on the morning of kiddo's next therapy session, I got him into the car, told DH I'd see him there, backed the car up and smack hit the closed door.

This, obviously, caused confusion and delay. As in, we were way late for the appointment. But the therapist to her credit was unruffled, and did as much with us as she could in the time she had.

She did have a good suggestion for the running in the parking lot: Give him something to hang on to that clips on to DH's belt, something he'd want to hold on to, so that he'll walk next to DH. Like a voluntary leash, so to speak. I went through an entire toy store and this is what I came up with:

Isn't he just the cutest little Wookiee you ever saw? (Hey, it was either Chewie, Darth Vader, Darth Maul or Yoda. And kiddo would've found all of the others scary. Including Yoda, who he still doesn't believe is a good guy. Geek fail.) And yes, he does the Wookiee growl.

Kiddo and I tested Chewie out over the weekend, as we went to the movies ("Arrietty," liked it), to the playground and to various stores. It works more often than not, although occasionally I had to remind kiddo to keep holding Chewie. I'm sure this looks a little ridiculous, but so does running after him yelling "Get back here now!"

We've continued doing time outs in the chair in the dining room, although we had to switch corners, since he decided it would be fun to hit the framed Ansel Adams print on the wall next to him. I had visions of glass everywhere. A couple of times, he's gotten so worked up he's flat out refused to even sit on the chair, at which point I haul him up to his room so he can cool off, then bring him back down for a time out. I did that today, after he'd whacked his sister in the back of the head with a Nerf football, and then when I went upstairs to retrieve him, I found him on the floor, nestled in the blankets from his bed, sound asleep. I guess the time change wasn't easy on him.

Because that had only been the latest in a long line of tantrums today. He threw a fit this morning when I made him use the bathroom before getting dressed, instead of after breakfast. He threw another fit when I made eggs for breakfast. He threw another one when I told them TV time was over.

I've learned the thing to do when he throws a fit is to wait him out. When he stood in the bathroom sulking, furiously declaring "I am NOT going potty, I am NOT," I said, "OK, then I guess we'll just keep standing here." And after a few minutes, he did his business.

When he utterly flipped out about the idea of eggs -- "I don't like eggs, they're not good for me, I am NOT eating eggs, I am NOT, I am NOT" -- I shrugged and said, "OK, kiddette and I will eat them. But you have to try them before I make you cereal."

"Nooo! I am NOT."

"Uh-huh." I continued scrambling the eggs.

"I want cereal!"

"Well, you're going to have to wait until I make the eggs."

"I am NOT eating eggs!"

"Hey, remember the man in 'Green Eggs and Ham' and how he didn't want eggs, but then he tried them and he liked them?"

"Yes ..."

"Well, maybe if you try the eggs, you'll like them."

"I am NOT!"

"Uh-huh."

So I put the eggs down in front of kiddette, who immediately started to inhale them (bless her, she eats everything except falafel and mushrooms), and kiddo, who stared at them in utter despair. And then he sadly picked up his fork and ate some. He paused. "I like it," he said grumpily. "Can I have more?"

Yeah, Dr. Seuss and I have your number, kid.

So I can handle one or two of those scenes a day. But some days there are more than that, and then my patience runs out. I'd love to know how other people stay patient through all this, and is the secret martinis?

Anyway, the important thing is, the garage door is only a little dented on the inside, and now we have Chewie to guide us. So maybe things will be better this week.

Progress is my middle name!

Oh come on, admit it, you loved "Back to the Future" too. In fact, so many people loved "Back to the Future" that when I Googled the above phrase to make sure I wasn't misremembering it, I got pages and pages of people quoting the same line in their blog posts. So now I'm an '80s movie geek and derivative. Happy Leap Day to you too.

Anyway, the progress. We met with our behavioral therapist this week ("our," of course, because she's therapy-ing DH and me as much as she is kiddo). Seems nice. She talked to us for a bit to get a sense of what was going on, though she seemed more interested in the possible OCD than the ADHD. I was a bit on edge because I knew she was watching us interact with kiddo the whole time -- and of course that's part of her job. I just dislike being watched. (I also suspect the unbelievably opaque sliding windows at the desk in the front office are a way to secretly observe the people in the waiting room. Although it's possible I've just watched way too many episodes of "24.") Kiddo was mostly behaving, sitting next to me on the couch, except when he started kicking my foot. I quietly said, "That's one," which more or less worked, which is good because I'm not sure you can really give a kid a time out in the middle of a doctor's appointment.

She had several suggestions, among them to do time outs in a chair in a quiet corner, rather than in his room. I kind of already knew we were supposed to be doing that -- "Supernanny" says so -- but getting him to stay in his room has been such a trial I didn't dare move him out in the open. She also said to leave the timer in sight, so he knows how much time is left. He did end up getting a time out that night and we plopped him on the spare dining room chair in the corner -- and he stayed there. The whole time. It was positively weird. I'll be even more impressed if he does it again.

The other major thing to work on is his tendency to run around in parking lots. Which is, obviously, bad. She said DH should let kiddo walk on his own as long as he's staying nearby, but the second he starts to run off, he has to hold Daddy's hand, and then no prize waiting for him in the car. It sounded like he did all right with that today.

As for the occupational therapist, seems most of them don't want to deal with insurance at all, let alone your attempt to get their services covered by insurance. So the one place I contacted, which is fairly close to our house, has just stopped returning my calls. Yeah, OK, I get it, you people can afford to have crappy customer service, moving on. (Seriously, I couldn't even get a live person on the phone. It just went right to voicemail.) I emailed the second facility, which appeared to be run by an actual nice human being, and am waiting to hear back.

The hospital finally sent us the diagnostic report -- mailed and emailed, even -- so I can send that on to the school district. Now it's possible that the plan was always to send it to us, and the holdup was just the doctor needing to compile and sign off on the final document. In which case the office staff could have just been out of the loop. Theoretically. It's also possible that they really weren't ever going to send us anything, on the grounds that it was "just a followup visit," and the only reason they did was that I was mean to them. Because sometimes people only do their jobs when you make them.

The report doesn't mention OCD, but does mention Oppositional Defiant Disorder, which also kind of makes sense. Aside from the behavioral therapy, the doctor also recommends fish oil. (Way ahead of you there, Doc.) No mention of occupational therapy, even though she specifically wrote us a prescription for it. So, not the most comprehensive report. Meaning either she just oops forgot to add that part while she was writing it, or she threw this thing together in a hurry because she hadn't been planning on writing one in the first place.

Really, I am so done with the hospital. I'm hoping the behavioral therapist more or less gets us where we need to be.

Cousin H. says dealing with this with her son was a full-time job for the first couple of years. I can completely see how that would be the case. Unfortunately I already have a full-time job, so time management is going to be a bit of an issue.

I am resolutely not thinking about all the years ahead in which we'll be dealing with these aggravations, because if I did, I would be extremely annoyed.

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?

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.

"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.