New keyboard, new conversation, new pictures, new sickness

Sorry about not writing more often. My keyboard was slowly breaking as the space bar and the w key gradually needed more and more pressure and bangs before they would work. This week it took four or five hard slams before I could get a space or a w, and you just don't realize how much you use those keys until you can't. Like straining your neck.

Here's me and Derek's best conversation yet:

Derek: (hands me a pretend something)
Me: What's this?
Derek: Ladybugs!
Me: (pretend to eat ladybugs)
Derek: No!
Me: Okay. (Dumped ladybugs in his juice)
Derek: Oh! Swimming!

I thought of two solutions for the hitting and pushing at preschool. The first was some cards with pictures of the rules drawn in my own fine artistic hand. No hitting! No pushing! His preschool teacher told the kid he'd been bugging on Friday that when Derek started hitting or pushing him, he could tell Derek to stop and then go get these cards. For the second, I realized that a more socially appropriate way to get the same sensory input for Derek is a high-five game. Gimme five! On the other side! Through the hole! Break the stick! Up high! Down low! Too slow, Joe! Break the pickle! Little tickle! So I suggested that the other kids can try to engage Derek in a game like that. (Anybody watch that Family Guy episode where Peter pretends to be retarded and gets an aide at home who offer high fives all the time?) The tactics actually worked really well on Monday. The teacher has a fire truck tent set up in one of the rooms as part of community helpers week, and Derek and this kid played together in the tent for about twenty minutes. I think this is another personal Guinness record for Derek.

The hitting and pushing in crowded situations is a different animal, I believe, after some insight from Jennifer. She saw Derek do some pushing at a charter school information night. She thought it looked like a "get away from me now, I'm overwhelmed" sort of push. It was a loud, noisy, small room with lots of children and twice as many adults. Music Together is also overwhelming to his senses. I used to be able to prep him with the brushing technique that the Occupational Therapist taught us, but he hasn't let me do it to him at all for several weeks.

Unfortunately, the Bebe is sick again. It was only two weeks ago that he recovered from his last fever and now he has another. While Derek's laid out on the couch, I'm cleaning and cooking like mad. It's the only chance I'll have to do it, and if I get sick I don't want to be wallowing in my own filth with no supplies for a week again. I'm also getting very familiar with all the kid's TV theme songs and they are stuck in my head and come out at weird moments at work. I tried to explain this one show, apparently one of Jim Henson's last hallucinations to a co-worker the other day. See, there's this psychedelic bus with a engine that sings during transitions and these Hoobs have come to Earth to find out all about life here. They have their own hoobety-doop sayings and whenever they see each other they say "Hooble-doop, hooble-doop, gooooooo Hooble-doops." It's groovy, baby. Allen and I are looking for an herbal supplement or something to strengthen Derek's immune system so we don't have to be subjected to so many theme songs anymore.

Wrestlemania

A few weeks ago Allen took his cousin Sean to see WWE Raw when it came to Portland. Sean is 16 and also autistic. Perservations: wrestling and the weather. So going to Raw got Sean about as thrilled as Sean gets. He smiled real broad and did some wrestling poses in the mirror.

Derek likes a more real-life approach to wrestling. This week at Music Together he mainly wanted to run laps around the room and crawl around head butting other kids in the belly. So he spent a lot of time wheelbarrow walking and wrestling. I drew pictures of his bad behavior and big no signs over them. "No running!" I said. "Yes running!" he said. "No running!" "Yes running!" "No running!" "Yes running!" No running!" "Yes running!" "No running!" "Yes running!" "No running!" "Yes running!" "No running!" "Yes running!" "Gagh!" "Tee hee!" Full of beans.

Derek's also exhibiting pushing and hitting behavior at preschool. I was parent helping today, and all day he would approach kids and push them. At snack he had to leave the table for a bit because he wouldn't stop hitting the kid next to him. Now on the one hand, it's great he's making social overtures. On the other, they are sooooooo inept, he has to be discouraged. I'm trying to figure out how to get him to make overtures that are both acceptable to other people, and that he's capable of doing. Many people over many months have told him to say "hi" or "let's play," but he doesn't want to use words. It needs to be more basic than words, but less violent than head butting.

The behavior may be related to his diet. We started the GFCF diet January 1. This last weekend we didn't have any infractions and I made an effort to keep soy consumption down. His preschool teacher was commenting early this week that he's talking more and looking at faces more. He's also being a bit more of a pain in the butt, but in a funny, happy, teasey way. Then Wednesday he ate several bites of cheese toast while Allen and I were having a conversation. Then Thursday he poured himself a glass of milk and drank half of it while I was distracted by something so stupid I don't even remember what it was now. And the later part of this week was marked by rigid thinking and head butting. So maybe this is an indication that the GFCF diet is working. Epsom salt baths are supposed to help purify the body after an infraction, so I tried that tonight. We'll see how the rest of the weekend goes.

School Shopping

Best phrase today: "Little People on bus, go to store." I asked him if he wanted to play with the bus or go to the store. He told me he wanted to take the Little People bus with him to the store.

School shopping: We went to a "Meet the Teachers" night at Trillium Charter School. This school boasts a democratically run, mixed-grade, small class, project and theme based curriculum. The room with the teachers was full and chaotic. Derek did okay for about fifteen minutes before starting to push other kids. We found some quieter spots and he set to finding and playing with all the tape players and computers. Some kids like the animals, he likes the buttons.

I saw Sebastian's mom Jennifer there and we kvetched on the way home about this whole overwhelming process. It's hard to know exactly what your kid will be like in 6-9 months when they start school. (Hell, I don't even know what job I'll have in 6-9 months, but that's another story. At least Allen knows what job he'll have.) So first of all it's hard to choose the perfect school, and who knows what school you'll get into, anyway, given the lottery process for some and application process for others. And it's nigh on impossible to write three years worth of goals and accommodations on an IEP 6 months before the three years start. Jennifer reminded me of the Multnomah County Developmental Disabilities Office and how I have a social worker there who can help us get stuff like respite care and grants for therapy. Plus, there's Autism Specialist that's connected to the schools, but not to the school district that I can bring in to help make the decision about kindergarten. So now I have a big old to do list.

Derek and I had a good day today. We vegged a bit after I came home from work, then we set off for the grocery store. Derek did quite well – no stimming on doors or refusing to go down an aisle. He made some choices regarding foods he wanted, like cereal and popsicles. Then we headed over to the park. We didn't have the best Floortime experience there, but it was COLD, and we did our best, so I forgive us. Back home we had a snack and some computer time, then a good dinner, and off to Trillium. Not the best ever transition to the bath, but he got in there and liked it eventually. Then pajamas, stories, and peacefully off to sleep. (His toothbrushing is improving immensely. He gets the brush in his mouth and moves it around some almost every night and even goes for toothpaste sometimes. He used to never allow anything like a brush near his mouth. The secret: electric toothbrush.)

I think I am nearly all better after the evil flu, though I still have the sea lion cough and the alarm rings damn early in the morning. It's so nice to hear from my fans, so I will do my best to post more.

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.

Throwing the Baby in the Bathwater

For a few months Derek has been firmly against baths. Once he learned to verbally protest, bedtime in general became one big verbal protest. But about a month ago, Allen made up a game that Derek loves and gets him in the bath. We pick him up and swing him around to throw him in the bath. 1….2….3….Wait a minute! You still have your shirt on! So then he takes his shirt off and we pick him up again. 1….2….3….Wait a minute! You still have your pants on! This is HILARIOUS! We can also pretend to throw him in other things that are not the bath, like a chair or a bed, or the sink. Then he takes over: "Wait a minute! That's not a bath. It's a chair!" I think he made his own personal Guinness record for phrase length with "Wait a minute! There's no water in the bath!" I think he needed some help putting this one together, but notice that it doesn't follow a formula like the other phrases. So many reasons to like this game: the vestibular stimulation from the "pre-throw", the parents being SOOOOO stupid, the endless variations that still follow the logical formula, and the way it eases the transition into the bath and to bed by drawing it out.

In other news, I must apologize for my poor blogging lately. This past week was unusual and exhausting. My work is hiring two new teachers and transitioning to a new semester. We also got hooked up with a new speech therapist (for free!) at the Scottish Rite clinic. We get to see her twice a week! Yay! So far her office is a hit. Allen took Derek Wednesday (I had to sit in on teacher interviews). When he came in on Friday he asks "Where's the bus?" and starts rooting through cupboards for the bus. The therapist let him root through and got him to ask her to go get it. Then Derek played with a good variety of things while the therapist and I talked: the bus, a stove, a marble run, a ball ramp thingie. The ball ramp thingie had three colored balls and four colored holes for the balls to fall through. Derek would match up the red ball to the red hole and push it through, green ball to green hole, yellow ball to yellow hole. Then Allen started "messing up" the color matches, and Derek started scrambling to re-match them. It was a really funny game, nonverbal except for Derek's deep belly laugh and squeals. Then they put the marbles in the ball ramp thingie, then tried to put the big balls in the marble run. Hilarity ensued. Until we had to leave. Then sadness ensued. But the therapist's conclusion was that he already has some really good skills and has a great sense of humor.