We took J-man to the doctor yesterday for a physical. The county requires one as part of the paperwork to get him into the school system setting, versus the Early Intervention setting. The office did very well getting us in on time, but the J-man was NOT HAPPY about being there. He certainly knows that the doctor’s office is rarely a fun place for him.

While we were there, the doctor talked to us a good bit about what we were doing in terms of therapies and the like, and what our plans were for the near future. We told her about the special preschool J-man attends, and his speech, developmental, and occupational therapies. We talked about food, and how what he eats is limited by his sensory issues, and she gave us a few tips about getting some extra calcium into him.

She seemed pleased at the progress he is making, and understanding of how far he has come, although he’s still delayed in most areas. J-man wandered around during that portion, so she got to see him not freaking out… and called him adorable. (Of course she did. He IS adorable.)

Then she said, “It’s so great that you are doing this now when he’s
so young. The earlier the therapies start, the better the outcome usually is. You guys are doing a great job.”

It was nice to hear that. It’s especially nice because I never feel like I’m doing enough, but I also have to have a life too, so I’m constantly pulled in two ways. (Or seven…)

When we were finished, and J-man was all dressed again, she asked him if he was ready to go and get in the car. He looked up at her and raised his arms, and said, “GO CAH!”

Go man go!

We had our first meeting with the school system today! Mary and I took the 25-minute drive down to where most all of the county and state child-oriented offices are.

Architectural aside: You can tell that the construction of this building and the passage of the legislation that mandates special ed services might have had something to do with each other. The 70s, brown, prison-crossed-with-bland-military-base-buildings motif of the place was as depressing as I remember it from his first evaluation there two years ago. An army of children could have shat all over the bathroom and you never would be able to tell.

Anyway, the meeting involved his Early Intervention Coordinator and a representative from the school system. As defensive as all parents who go through this are programmed to be from the word go, this went very well. We’ve been told by several people that if you’re going to live in North Carolina and have to get services through the county school system, where we live (Wake County / Raleigh) is the place to be.

No real red flags at this point and we have a pretty decent sense of what our schedule is going to look like between now and the start of the school year. Many parts of the outcome are unknown obviously (where he’ll be placed, what services he’ll qualify for, etc.). Given that the official meeting to determine everything (the IEP meeting) won’t be until less than a month before the school year starts, we’ll be hitting up on some serious time pressure there. Because his birthday and the start of the school year are within a few days of each other, this apparently makes it much easier for him to get a placement closer to our house. There will be much rejoicing if that happens!

The one major issue that gets my Hanes all in a wad is that when school isn’t in session, the special ed kids get no services through the school system unless they are in an extreme situation of regression. I was thinking, Yeah I know school won’t be happening, but surely he can still get some speech and occupational therapy through the county during those times. *Buzzer* Thanks for playing.

Harsh reality of county school services #1 - No school = you’re completely on your own until the next time the bell rings weeks or months from now.

News flash for school systems #1 - The typical degradation over the summer of a child’s knowledge of civics and calculating the time it takes trains to meet in Wisconsin is not as big of a deal in the grand scheme of things as the potential regression of speech in an autistic three-year-old. I’m way more interested in him talking than having that vacation to Disney. Just sayin’.

We do both kinds of school years here: Year-round and “traditional” (end of August to early June, give or take). I would think every special ed parent in the world would want year-round since the breaks between sessions are spaced out and shorter, which means less interruption between services. We can fill in 2-4 weeks off a few times a year with something. It’s the 2 1/2-month expanse of nothing in the traditional calendar that concerns me. Talk about a potential for regression!

Helpful answer to Reality #1 - The “Autism Underground” (pretty much what I’m calling the collective of parents around here who form the most elaborate support network I’ve ever seen) kicks in and offers everything you can think of to help you through those breaks in the action. We’d probably also try to get back in with his current therapy office during those breaks to keep the progress going.

Of course, we’ll also have the new home ‘classroom’ (still a vaporware DIY project). But since the recommendation is for 35 hours per week of total activity time (school + therapy services + work at home on therapy-related activities = 35), losing for any period of time what will make up the majority of that - school - will be rough. We’ll figure it out, but this has been a bit of sticker shock for us.

Confluence of unrelated events that may work to our benefit #1 - J-Man misses the kindergarten cut-off here by a whole day. This means he will be eligible for three years of preschool and not two, all because they couldn’t schedule Mary for induction in August three years ago. That could really work out well toward meeting our primary goal of getting to a place where he can be mainstreamed in a “regular classroom” and get near age-level developmentally by the time he starts kindergarten. Either way, much work lies ahead.

All that said, this part of the IEP process is like the preseason in NFL football. People go out and run a few plays and get acquainted with the game. It’ll be a couple of months until we put the pads on, but all signs so far lead us to feel optimistic that we won’t need to use them.

I found the Amalah blog and laughed till I almost cried. Her son is in Early Intervention too with speech delays, sensory issues, and the like. It really helps to know other people are out there struggling through this. I so needed a good laugh after this past week.

A bucket of Advil hasn’t put a dent in the tent-stake-through-my-eyeballs headache I’ve had lately. Some laughter seemed to help, though. Thanks!

As Mary said, next Tuesday begins a three-part, private evaluation to see whether J-Man has something on the autism spectrum.

After reading endless books on the subject, he doesn’t seem to fit any of the categories for ASDs, but he does fit some of the characteristics of some of them. The DSM-IV (the Gospel According to Mental Medicine) requires kids to meet some number of criteria within a particular diagnosis in order for that diagnosis to be, um, diagnosed. As best we can tell, he doesn’t cross that threshold for any of them. I suppose if it’s any of them, PDD-NOS (a.k.a. “um, we don’t know”) is the most likely one, but who knows.

In case you’re wondering why we’re having this evaluation done - and paying for it out of our own pockets no less - even though we don’t think he is on the spectrum, the truth is that we want to either rule it out or keep it in play based on a thorough evaluation, not the drive-by evals we’ve gotten through Early Intervention (EI). We might as well shake a Magic 8-Ball for all the good those evals have done us.

Don’t get me wrong. We have plenty of good things to say about EI; this just isn’t one of them.

The evaluation will take place over three sessions over a four-week period. The first is just for the parents to be interviewed, listened to, and go over the very long, and pretty depressing, questionnaire we’re filling out. Thank God an evaluator is finally listening to what we think! The second - two weeks later - will be us and Mister Man. The third one I guess is to go over the results.

He absolutely hates evaluations. He doesn’t “test well” apparently. Of course, the Dart Throwing Diagnostic Indicator tests we’ve had so far probably account for a lot of that. If he had the fine motor planning control to flip them off, he probably would have. In the end, it felt like an episode of Dance Fever (”Your moves were sluggish and off the beat. I give it a 42.”) with about as much statistical relevance.

Anyway, this private practice comes highly recommended. We’re finding J-Man’s diagnoses by process of elimination as much as confirmation, so we hope this gives us something definitive one way or the other. In many ways, this won’t change his therapies, but it will give us something more to work with when he graduates into the school system’s programs in a few months.

We’ll keep you posted.