Thursday, March 11, 2010

Pulling the brain together

Tomorrow is supposed to be the first pre-IEP meeting, that touch-base where I hit up Joey's case manager with things I think the school folks should be thinking about as we start to do the IEP jig. These things are still mostly vague nigglings of things being wrong. Some are more solid ground, some are harder to lay a finger on. These are things I am still trying to process enough to express, because time seems to flash by before I can get a grasp on anything these days. It is time to rev the processing a bit, and get moving on the new powerpoint, because Joey is going to a new school next year. The new people kind of know who he is, because I get titchy about playing phone tag with the school principal (which I am still doing!) and kinda complained to the director of student services, who kinda let it be known that balls better start rolling or heads would. I understand they have sent some folks over to observe Joey, and that's fine. But even if they spent the whole day with him, they have seen him for, oh, seven hours, max. They need to know who this child is, and who I am, and what expectations we have for Joey and for the school.

One thing about making a powerpoint, it brings focus to the processing. It also is an exercise in balance. We want people to know both the good and the not-so-good, the strengths Joey has as well as his weaknesses. We want folks to know what kind of grasp we have of the situation and of Joey. We aren't one of those parents who never shows up for meetings and uses the school to baby-sit the kid. We expect progress, we expect support, we expect education.

We have been pleased with Joey's team these last few years, and we're going to be sorry to lose people who not only know Joey so well, but have a solid sense of how to support him and keep him on the straight and narrow. We've also been lucky enough to have an aide who can sign, and that helps more than people understand. With all the good, I'm a bit in a funk about the bad. Its a shock to see Joey not doing things, unable to do things, he was doing, or at least trying, in kindergarden. There is a lot of frustration that need to be addressed. Social issues of group play and dynamics, skills he needs to get on in the world, need to be considered. How do you teach a child how to figure out what a group of kids is playing? The isolation needs to be addressed.

With the warm days, we have been playing more outside, and have more neighborhood children around. One of these children is an older child with Asperger's Syndrome. I was supervising the little group of children, watching their game. It had something to do with farmers and bunnies, and chasing each other, and being tossed into a stew pot. It was really amusing. Then Joey came home. Joey didn't understand about the rabbit thing. He reverted to the little game he's been playing this week, where he pretends to have a pet mouse in a cage. Our aspie neighbor didn't miss a beat- he was the farmer, the other kids were rabbits, except Joey was a mouse, no problem. The game continued, but it became clear that Joey couldn't figure it out, and in the end, though he was in a swirl of children, he was very much alone. Attempts to get him to join the game were met with blank looks and confusion. Even trying to shift the game to meet his own didn't work. Our aspie neighbor wasn't totally blended in, but he wasn't completely isolated, either. He worked with the kids around him, they worked with him to all play together. Joey can't do that yet.

I want to know why. That may seem very obvious to many of you, but for me in the up-close, it isn't. It isn't as simple as being autistic. And why am I concerned? After all, I remember wandering off from other kids at that age, not interested in what they were playing, feeling isolated from the children around me. If he wants to be alone, is that so bad? Yet I can tell you that this is affecting him in ways that need to be addressed. It feeds into the frustration. It is feeding into some psychological issues that are being expressed in negativity. It is heartbreaking to hear Joey suddenly yell out, "I am a STUPID BOY!" every time he thinks he has done something wrong. He wants to join the game. You can see him trying to join in, trying to play with the other kids, trying to figure it out... and giving up.

I've got to pull my brain together and figure out how to help him keep trying, how to help him learn how to do this. We can't give up.


leefreems said...

I'm just learning about how to deal with social interaction deficits and have found Michele Garcia Winner's 'social thinking' materials and website filled with information. if you haven't already done so check her out.


farmwifetwo said...

You could always start by having him watch the game first and describe to him what's going on. Discuss with him options of what he can do and how to interact.

I don't know his verbal level so I'm just tossing ideas.

I believe starting with structured activities works the best. Learning to follow instructions in a small group setting led by an adult. We did library programs, Scouts, swimming, karate etc. These helped a lot and he's (eldest) doing very well at school.

Little boy has a peer group at school - his classmates - that take turns being his "buddy" at recess. He leads - PEC's on a belt - what to play. Watching him play hide and go seek a couple of weeks ago with his bro and his bro's friend... You would never have known which one was the one with the severe autism. Again, b/c the rules have been taught.

I have the RDI book for children to adults. The workbook. Maybe it has ideas in it?? Truth is I've never read it end to end. Maybe I should.

Stimey said...

I'm sorry I'm late and just catching up. I know this sense of discouragement too. It must be doubly hard when you're leaving a good situation and heading into the unknown.

Here's something about the play situation you describe. Joey wasn't able to play, but the kids included him. And that's so huge. Yes, he still has to figure out the Joey piece, but how encouraging that these other children are so willing to work with and for him.

I don't know that I have a lot of ideas for you. There are days that I could have written much of this post myself. But I do have hugs to send you.

I also am working with a speech therapist on social curiosity and social thinking (as a parent coaching thing). It's really interesting. We'll see how well it goes.

Good luck, friend.

Stimey said...

Oh, I forgot! You know what? Remember how you gave me a copy of your power point years ago? Well, I do mine as a three-page handout, but everyone on every team I've ever dealt with has loved it, including the county guy we sicced a lawyer on.

I've passed the idea on to many others as well and they have received similar positivity with it. So, even when it's tough, remember that you're making a difference, have made a difference, and will continue to make a difference. You are the best mom for Joey, and you will figure it out.