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.

Two Little Men From School Are We...

For some reason, the boys decided to do this morning's routine in operetta. I think Joey started it; as I came out of the bathroom, he started singing "Good morning! Good morning! We're up and getting ready for schoo-ool!" and dashed off to his bathroom to start dressing. Andy was a bit slower, a bit grumpier, nothing like he will be this weekend. Then he heard Joey singing, "It's picture day! I'll have my picture TA-ken!"

Andy hopped in with both feet, picking out a shirt and singing along. They sang to the cats. They sang about putting on their coats. They sang about Mom making their snacks. We had a short squeak because Joey got so into the singing, he forgot to put on his shoes and it looked like we would be late to the bus stop; but then he got them on, and sang (with a very earnestly sad face) that he was late for the bus and might miss it and miss picture day. But then we got to the stop, and here came the bus, and all was well with the world.

Nothing like a little music to start a beautiful day.

Monday, March 08, 2010

My Mommy Sense Was Tingling

OK, ever have that moment when you're thinking, Well, the child has a cold, but there's something just not quite right about this, but if I take them to a doctor, they're going to tell me I'm nuts because the fever will be gone by the time we get there, as it always is, and maybe what I think is a rash is really just too-small clothes and teeter on the brink of taking the child or not? And then you decide to take the child, because its better to be laughed at and have it be a false alarm than to ignore your Parent Sense and have it be serious?

Yeah, I'm having one of those days. What's even funnier is that when we got there, and the PA saw him, she was confused by the rash, which is localized. She peeked in his throat that Andy says isn't sore, and decided it was just a little redder than she liked, and so they took a swab, just to be on the safe side... in other words, her Doctor Sense was in tune with my Mommy Sense, even though Andy perked up and had no fever.

Yep. He's got strep. Who knew? Glad I took him. Now we had medicine, and he can get on the mend.

Sunday, March 07, 2010

Trigger of the Month: Death

Ever since our fish died. death has been a trigger around here. When playing along, all of the sudden, Andy's toys die. He'll be rolling along in a little narrative (very difficult to follow because he still does not speak clearly) and suddenly, he'll come out with. "Oh, but he died. He's dead." Joey is playing nicely, or talking about numbers or something, when suddenly he comes out, "y fish died." Andy runs down to check the fish in the middle of the night. We haven't told them Henri is gone; we noted that sometimes he hides in the little statues in the fish tank, and have let the matter drop. Extensive conversations on the topic have yet to turn out well. Toys also kill each other, or "died" each other, only to come back and "get better." We talk about death, separation, the permanence of death, the moving along of life and the natural aspects of death in life. We try to keep it simple all the same. I even pulled out a Mr. Rogers episode about a dead bird, trying to give them a safe discussion. We watched Charlotte's Web. When it pops up and causes anxiety, the usual modes for diffusing anxiety just don't seem to be working.

Death is one of topics that mythology works best for, but when you have a child who prefers tangibles to metaphor, myth is not the best tool for communicating an idea. So we stick to the tangibles: the fish were here, and we loved them and took good care of them. Now they are gone, and we miss them. We will think about them, and remember them, and we can still love them. This seems to be the most help when the spiral begins.

Its still a little bit of a shocker when you are going along in a conversation, and suddenly the topic of the conversation is "He died. But he's OK now."