The Po Show

Living in the Moment

Thanks, Richie, for the reminder in your comment on my last post, that we all work for the moment, the good moment, and that's all we really have.

Actually though, my first inclination upon reading that was to mentally whine, "But I don't WAAAAANT just a moment! I want it all good, I want it to STAY good, I don't WAAAAAAAANT to have to keep fighting every other moment for the next moment to be good!" Is that too much to fucking ask?????

I guess it is. And I guess the comforting part of this is that the BAD moments, they pass too. And the next one can be good. Yesterday Matthew came home with his behavioral chart, and he'd gotten a perfect score, all points awarded. A great day. This behavioral chart is really a major challenge, and in a good way. It's elements are:

Matthew will:

1. Work out problems with others without losing control
2. Show good effort in classwork, including difficult assignments
3. Worry about himself, not what others are doing
4. Stand and walk in line as asked
5. Use strategies to help negotiate changes in routine

This represents some huge goals for him. From the time he was in daycare, our foremost goal for him was "Don't hit anybody," and everything else was secondary. That's still true to a certain extent, but this chart forces him to examine all his actions throughout the day. Or that's the hope anyway, to get him to think and take a moment before swinging and tantruming.

Rich, IEP = Individual Educational Program, and it's the plan worked out each year for special education kids by the school district and the parents. Each is individual to the kid (hence the name :)) and it codifies the educational goals (including socio-emotional goals) that the kid is supposed to work toward in the coming school year. For those of us with special needs kids, it basically comes down to what services the school district is going to give our kid to try and bring them up to "appropriate" standards. Matthew currently receives Occupational Therapy, Counseling (with the school psychologist, which includes a social skills group), the services of a Special Education Teacher (who is in his classroom for part of every day, since he is in an inclusion class that is composed of both special ed and "regular" kids), pull out instruction (for reading and writing, though they're dropping the reading because he's at grade level, which is great), and he gets a one to one aide.

The one to one aide is the major element. He's had one since kindergarten, and it's the one service I feel makes or breaks his school success. He needs someone there to help him navigate the day: to keep him on track during classwork, to facilitate his interactions with the other kids, to take him outside and let him walk around when he starts to lose it. And to help defuse him, to watch for his triggers, to see when he's starting to lose it and to help him deal BEFORE he blows and reaches the point of no return. Because MAN, dealing with him now that he's 9 and almost 5 feet tall is a lot harder than dealing with him when he was 2.

They more or less don't offer full-day one to one aides here in NY. They don't give them very willingly period, and in some school districts it's next to impossible to get them. This is pretty standard, since what service could be more expensive than hiring a human just for one kid? So Matthew has his aide 3 hours a day. And he really needs her. Almost every single time he's had a major incident, it was when his aide wasn't there.

So anyway, that's why I was so incredibly pissed when we received his IEP and "Teaching Assistant 1:1" was not listed under his services. Yesterday I got in touch with our case manager, who is the school psychologist, to complain. She had the Chairperson of the Special Education Board call me, and she assured me that he was going to have his aide. They listed it under "Notations" as "Enhanced Staffing, 3 hours per day" to give them wiggle room (basically, if Matthew didn't need the aide at the moment, she could then help out other kids, which happens anyway; I've seen it). I told her I still wanted it codified. She said it wasn't necessary.

I finally laid it out on the table that look, we might be moving and I WANTED it explicitly written down that Matthew was to have a one to one aide, so that the next school district we went to would have to give him one. She said, okay, in the event we're moving, they'd be happy to rewrite the IEP before we left.

I hung up the phone, not really having done much, but feeling like SuperMom nonetheless. I hadn't backed down, I had stated what I wanted for my kid, and I'd (sort of) gotten it.

Now that's a good moment.