Good Day/Bad Day

First my mom came to visit, then the evil flu had us lying on the couch watching TV for a week. And now I am trying desperately to dig myself out from under the giant mountain of housework that accumulated while I was sick, despite hardly moving around or cooking anything. Kid can still pee while he's sick.

Two recent sensory related observations: Derek ate a good meal and jumped on the trampoline and afterwards his handwriting was fantastic. He was very patient in the cart at Office Depot while eating gummi worms. (Calmed by the chewy? Or maybe he just likes candy?)

Anybody ever get depressed because of the flu? I started realizing that it's been just about a year since somebody first mentioned that Derek could have autism. I remember the doctor gave him a good prognosis when she first diagnosed him. Now I am worried that we didn't do enough to help him out in the last year. Here's the biggie we still don't have: a complete, comprehensive plan in which a team of therapists, doctors, teachers, and us lovely parents are working together to help Derek overcome the autistic tendencies that hold him back from fully engaging with life. I'm still very slowly putting together this crazy quilt of therapies and feeling overwhelmed and inadequate.

I'm putting together Derek's application to Metropolitan Learning Center, a K-12 alternative school here in Portland. Allen (dh) and Jenny (bff) both went there in high school. They emphasize a humane, respectful, free, and compassionate environment in which students are encouraged to make responsible choices and engage in experiential fieldwork and community service. This sounds like it might be a great choice for Derek. But there's been some buzz in the Portland autism circles that MLC might not let in autistic children, going for more charismatic, precocious, and articulate types. Some worry the school environment might be too chaotic for ASD kids. I'm not really sure, but I'm preparing the packet anyway. Kindergarten seems like such a huge choice for Derek and our family. Whatever happens now determines his life forever!! Aaaaahhhhhhhh!!!!!

So I went to the person-centered planning class to help sort all this out. Unfortunately, I was on day one of the flu, so I mostly concentrating on sitting upright. But I do remember that the teacher said to get as specific and detailed as you can when describing a good day and a bad day and the things that are important to Derek. There's a distinction between what's important TO Derek and what's important FOR Derek. For instance, a great day in Derek's mind would be eight hours of Homestarrunner and another four messing around with the VCR. Meals would consist of bacon, popcorn, and popsicles. I would collapse in a puddle of crazy. I think it's important for Derek to eat proper, balanced meals at a table, engage in two-way communication with human beings to the best of his ability, have some structure and predictability in his day, and satisfy those sensory needs with vigorous exercise and massage. Two very different viewpoints on a day.

So here is a compromise version of a good day:

Wake up dry and refreshed. After some cuddling and conversation, Derek potties, chooses clothes that suit the weather and his mood, and puts on socks and shoes without fuss. We have exactly what he wants for breakfast in stock and he helps prepare it and pack it to take to morning preschool.

He wants to take the bicycle and the day is bright and sunny. We are moving smoothly and on time. At preschool he eats his food and starts playing.

There aren't too many kids at school and a helper gets to have some one on one time. The play doh is out and he enjoys the proprioceptive and tactile input. His fellow preschoolers initiate a game and Derek is regulated enough to respond. He gets a job to do at clean up time and loves it. Everyone is eating a snack he can eat and he likes. He eats a lot. Dance includes the parachute. He goes potty when he needs to and stays dry and clean.

Daddy arrives on time. They have a good lunch of bacon, eggs, and grits. They play together on the trampoline or tickling.

Etc.



And here is a compromise version of a bad day:

Wakes up wet and cranky. Refuses to potty or get dressed. Some weird mismatched outfit has to be forced on his stiff body. The shoes he wants have been misplaced and a desperate search does not find them. Unsatisfactory shoes are forced on and the day's first meltdown begins. I'm brusque and impatient as I force him out the door, late again.

He does not want to go on the bicycle, but we are too late to take the bus. I fold him stiffly into the bike trailer while yelling a few choice expletives in case the entire neighborhood didn't know we were having a bad day.

Upon arrival at school, we have forgotten his helmet. Things are not as they should be in his mind and it is distressing. He pees his pants before I am out the door.

At preschool he has trouble sharing his very favorite toy and gets in an altercation with another kid. He doesn't like his snack and tries to sneak snack that is not on his diet. He poops his pants. His nose runs and people try to wipe it. It's raining so the class does not go outside, but stays inside for large motor. There are more children than usual and the room is noisy and chaotic.

Daddy is late for pick-up but Derek can't have the lunch food because it is not on his diet. He's whisked straight to afternoon preschool.

Etc.

The versions aren't finished, but I'm tired and you get the idea.

And to add another stick to the camel's load, I got a call from the Music Together teacher yesterday. We missed last week because of the flu. Derek pushes the other kids in Music Together class now and then. He gets excited about the music and the people and stimulation and tries to make social overtures. And it never ends well. Especially when with this other kid named Owen. Owen is very sensitive and cries whenever Derek knocks him over. And Derek is clueless. No matter what I say or do, Derek will not understand that is actions make this boy sad, and therefore he shouldn't go near the kid. So while we were gone with the flu last week, Owen's mom talks to the teacher about how Owen had trouble sleeping after class the last time because Derek made him cry. So the teacher calls me to ask if I can come in a little before class and talk about it. I dread this kind of thing. Somehow I have to explain to somebody how my kid is a jerk and I can't do a much about it, but I do feel bad and will try to avoid their kid as much as possible.

So today I bust my ass to get to class early, throwing poor Derek off the usual routine. Owen and his mom come in just as class is starting. I'm super anxious that Derek would run over poor Owen, casting his asshole reputation in stone and reserving my place next to Chuck Manson's mom on the Express Flight to Hell. Derek's full of beans all class, running laps around the room, colliding some with other kids, who brush it off. The teacher brings out the stretchy band—a giant rubber band with colorful fabric around it. Derek loves the way the band goes in and out and around. He gets in the middle of the circle to roll around and watch the stretchy band do its dance. This places him within arms reach of Owen and across the room from me. I freak out and try to get him to get on the outside of the circle, within arms reach of me and across the room from Owen. Derek gets upset at the suggestion and we end up in the hall, Derek in tears. It's a low point for me, too. Derek won't understand if we leave. He hasn't done anything bad—yet. I'm just upset at the possibility. Meanwhile, Allison, mother of Asher, the only kid in the room older than Derek, comes in the room. She wanted to let me know that she felt for me and Derek, and, basically, stood in solidarity with us. She had spent a lot of similar time outside of crowded rooms with Asher, since he is autistic, too. It nearly made me cry. She hopes we won't switch classes, since she enjoys seeing us there.