Saturday, May 08, 2010

The Hardest Half Minute

When I take pics and film of my guys, it is a rare thing to see them doing anything but being their smiling, happy little selves, being boys and doing stuff boys do. When I send out movies and slide shows of my kids, it becomes hard for some folks to believe that our lives are so divergent from normal. It spreads a sort of myth that my kids just do "more of the same".

I don't use the word "myth" lightly, as many of my students can tell you. That general misuse of the term to indicate "complete falsehood" makes properly talking about myth difficult. Myth is not false. Myth is about deeper Truth. Perhaps Truth on the Slant. An oblique view of realities, in terms that are understandable to the audience. The image I put out of Joey and Andy, that "like other kids, only more" is an oblique look at the Truth of living with my kids. But what does it mean to have "more of the same"? Does intensity make a difference?

I took footage of about 30 seconds of the start of a spiral today. Joey fell and scraped his knees, poor little guy, and the instant overload commenced. Few get to see this part of Joey, that "everything is perfect until something goes wrong; then I'm completely D.O.N.E." side. Those who do see it, see it so often, we're used to it, it just becomes par for the course, and you know what to do to mitigate and have the best chances of avoiding meltdown.

However, our new school folks have not seen it. The folks who think none of their little darlings would tease a special needs child have no clue what this looks like, or what to do; and it becomes so matter-of-course to the old crew that I think it gets overlooked. It is a part of our lives left undocumented, and I worry about it being ignored. Ignoring it can cause a whole host of problems; not having safeguards in place to deal with the unexpected spiral means meltdowns are on the way. Meltdowns are scary- for Joey as well for anyone around him. They are also avoidable, if you know what you doing and how to diffuse a situation (which is hard enough to do when you are prepared and keeping it mind!) I'd say, prepared, you have about an 80-90% chance of averting meltdown. Unprepared? Eep.

So I took about 30 seconds of footage of the beginnings of a spiral. I didn't catch the first initial shock and scream from the actual fall. I started with him hugging on his Dad and getting hugged, and yet things were still not right. He was D.O.N.E. It goes up to when he decides "I'm leaving now" (and says so), and I have to stop filming to go catch him. We didn't melt, and I'll probably never get footage of a melt. I'm too busy trying to help him to be filming something like that. But this was enough to see the storm clouds brewing. Hopefully dark clouds on the horizon are enough to indicate the strength of a potential storm.

Watching those 30 seconds was hard. I look over the clips, and erase ones that are better tossed to oblivion- unfortunate angles, bad focus, accidental exposures, that sort of thing. I also wanted to get an idea of what I had captured, because to be honest, I was paying more attention to Joey than to the camera, even though it was in my hand; those little markers that say "I'm about to melt!" are important to catch. I think it is important to get across to the school what skills we need worked on and able to generalize to home, and the potential issues over things we consider insignificant. It is also important to document the issue so we can measure improvements- or track regressions. I'm nervous about next year in a big way. The questions asked by the new teachers at the IEP made plain how unprepared they are.

It is all the harder to watch because we are through the early spring regressions, and have made our leap forward. Joey helped his Grandma make her bed- mattress cover and all. He is better able to locate objects in a room, even bringing things from one room to another. He is improving in his ability to control himself and cope. His language use is looking up. His attitudes are generally improving. He's doing so well. It makes the harder moments that much harder to witness, and to get others to understand. We've come so far, and yet have so far to go; we can't get stuck in a rut in the middle. Not now.


Niksmom said...

I know how difficult it is to not only try to capture those moments on video but to watch them later. We've had to do that to document some of Nik's nocturnal wakings and SIB's to show to doctor's who don't believe us when we tell them it's genuine PAIN not just "behavioral."'s so vital to have those things documented. Is there anyone that can help you by maybe taking video of a longer length which would allow you to stay focused on Joey & what he needs while still capturing the arc of the storm? Or, have someone (like Grandma?) standing by to take off WITH Joey when he decides he's done?

It sounds like the only way school is going to acknowledge that they don't know what to do is when they actually experience it. You are wise to try to help them prepare a bit better. Good luck.

Maddy said...

I know exactly what you mean.