Monday, April 23, 2012

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."


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?

Wednesday, April 11, 2012

The status of things

Whatever bout of insanity convinced us to host Passover, Easter and kiddo's birthday party all in the same weekend has now passed, and should that same urge ever appear again, I will beat it with a stick. One event per weekend from now on, period.

I do suspect the general craziness in the air around here infected kiddo a little bit, because calling him "oppositional" lately would be like suggesting a hurricane was a little wet. He throws Defcon 1 fits over being asked to go potty. He runs off instead of washing his hands for dinner. If you pick him up and bring him over to where he needs to be, he kicks. If you (quite justifiably) send him to his room so he can cool off enough to even begin serving his time out, he throws things at his bedroom door. Thunk thunk thunk.

Last night he goofed around instead of eating dinner and then threw a fit because I wouldn't let him have leftover birthday cake. This morning he and DH got into a huge argument because he wouldn't put his shoes on to go to school. Yes, this is as maddening as it sounds. I finally walked over, sat him on the couch and put the shoes on myself, because no one has time for this crap, and it did seem to defuse things.

The one saving grace of all this is that at least when other family members see what he's really like on bad days, they understand what we're up against. (Or they say, "My parents would never have put up with this," implying, I guess, that we're lousy parents. Ah well.)

Tonight was calmer at least. He did his homework, washed hands for dinner without too much prompting, ate -- well, sort of ate. Not enough to justify dessert, but he got over that. He told us a long, involved story about the scary freezing girl and the guitar that made everyone in the town freeze, and how he broke the guitar and made the girl cry. (I blame the Fresh Beat Band. Also, I miss Phineas and Ferb.) He practiced writing, got ready for bed, and only lost one of his two-book allotment for taking too long.

The timer on my phone is a wonderful thing. My readings indicate that ADHD kids (and adults) have no sense of time, which is why they're always dawdling and getting unfocused and running late and holding people up. So the past couple days, I've been trying to get kiddo acquainted with the concept. I tell him he's got three minutes to do X, set the timer, hold it up and wait. If he doesn't make it, he suffers a consequence.

We did our insurance-approved five sessions with the behavioral therapist and she was under the impression we wouldn't be back afterward, though we weren't thinking things would be solved in five sessions. She's had some good suggestions -- cut down on the toys in his room, thus cutting down on potential distractions; let him pick out part or all of his outfit for the day; try to emphasize positive reinforcement over negative. But mainly her point was, it's on us to manage his behaviors so we see improvement long-term.

She actually went on a bit of a rant toward the end of the last session. We started off talking about how you see small kids walking around with iPhones or iPods or iWhatevers, and morphed into Grown-Up Kids These Days and how their parents indulge them their whole lives and buy them whatever they want and never teach them how to work for anything, and then these kids get to college or get out of college and don't know how to function because, um, they've never worked for anything, and then the parents call her to fix the problem when it's probably past fixing. She said somewhere along the way, between the last generation or two of parents and now, people forgot how to parent effectively.

What's most interesting about that curmudgeonly-sounding rant is that the therapist is probably even younger than I am.

At any rate, we're figuring on bringing kiddo back to her periodically for support and reasurance, and someone to bitch to, so we're going next week.

We finally -- finally -- hallelujah got our insurance to cover occupational therapy; there was literally no one in the state on our insurance plan, so we got clearance for the center to be treated as in-network. Your timeline, folks: He was diagnosed in February, and he's starting sessions in April. I think the Titanic iceberg moved faster than this.

But we took him to the center for an initial evaluation, which he loved, because of the big rope swing and all the giant cushiony things to climb on and the big hammock to slide down. (I thought it looked a little fun myself.) We still have to conference on the full report, but on-the-spot judgment was, he's got some gaps in his physical development, and those gaps are making him, subconsciously, not trust his own body, and so part of how he deals with that is lashing out physically.

So I'm hoping between those two specialists, we'll at least get some more detailed answers.