Hey look! I got a digital camera for Christmas!

Here's my first picture with the new camera. Derek is thrilled.
So is Allen:

'Cause it's Christmas! Derek wanted me to take the following pictures.

His "glove:"

Bus:

Ball:Eyeball:Lunchbox:

Smokey, Allen and EZ Cheez. You can get them the fanciest smoked salmon and they'll sniff it and walk away. But EZ Cheez. EZ Cheez!

But the really great part of getting this camera is that now I can take pictures of Lego sets to sell on eBay and get the money to pay for Derek's continued speech therapy. Friday was our last visit with our beloved therapist at the Scottish Rite Clinic (free and doesn't discriminate based on income!!). The object of their program is to get kids ready for school and since Derek is in school and doing well, it was time to leave the SR program. Plus, our therapist got a full time position at OHSU, so it was sort of a natural time to break things off. We're looking at several therapists, none of which our insurance covers, naturally. So Allen agreed to sell his Lego sets. There's an entire room of our house dedicated to the Legos and they should fetch a couple thousand dollars when we're all done. But first a working digital camera was necessary. Next, I'll parcel them out and sell the Legos online. And have more interesting blog posts. Unlike this one, which is quickly going downhill into boring details. Look, more pictures!

Merry Christmas!! Love, Karen and family.

School Conference and Thanksgiving

Monday was our parent teacher conference at school. I'm pleased to report that Derek is meeting or exceeding all literacy benchmarks for his age AND has made friends of a sort. He shows a strong preference to a boy named Tyler in class and Tyler's parents would like us to get together for playdates and such. Yay!

I wish wish wish my digital camera was working because I would love to post pictures of some of Derek's writing. He is writing and drawing on practically everything these days. He can write the words "penny" and "moon" and likes to write jibberish all over the paper. He gets worksheets at school that have a letter, then a line of other letters and his job is to pick out the letter that matches the first letter. He recreates these at home and makes me do them. He also likes to draw on himself and the walls and somehow always draws his best artwork there. Yesterday it was a picture of a person sleeping in a carseat on his arm. A few weeks ago he drew an expressive person on my bedroom wall and it's still there, partly because I am lazy, but mostly because I am impressed. I think since school started he has spent more time drawing than lining up toys. Holy cow! She's a powerful sorceress, this Ms. McCormick.

Derek is with typical kids for Music and PE and is doing well. Some humming and weird vocalizing, but overall very well behaved.

Overall, I think Derek is in a really good placement for Kindergarten, about the best it could be given our financial and geographic constraints. And for that I give Thanksgivings.

Still Eating at the Table - Woot!

Just wanted to let both of you know that we are still eating at the table with good consistency. Yay for us!

Errands after school are really hard, though. Derek is exhausted and cranky and I've been dealing with plenty of crap at work, so patience is in short supply on both sides. Some afternoons are mostly temper tantrum, recovery, temper tantrum, recovery, temper tantrum, etc. But we had a good day yesterday. We didn't go anywhere because I did the grocery shopping before he came home from school. I wasn't feeling cranky or spacey from work, he didn't have to behave properly in the overwhelming grocery store.

Derek is excited about traffic lights these days. He used to have a compulsive thing where he would only walk down the street if the light up ahead was red. He hasn't done that in awhile. Now he likes to make his vehicles wait for the light when he's playing. He's really bossy and makes us all wait incredibly long. If there were real traffic lights that long, I'd fire the traffic engineer. Derek also comments on the state of the traffic lights as we are driving.

I went to yoga class in ages yesterday. My work got a grant to bring in a yoga class to the students and the teacher has extended complimentary yoga classes to the staff. The teacher is excellent and I enjoyed myself very much. My therapist will be proud of my excellent self care. Derek got to hang out with Sean and Uncle Adam, which he usually seems to like. Once it becomes part of the routine, I hope everybody will look forward to Wednesdays.

Next time I will try to comment more on the tantrums and think about how they could be prevented.

Eating Salad at the Table

One advantage of autism can be the lack of imitation. When I was a kid I wanted to be like my mom, so I decided that I did not like tomatoes. Years later as an adult I ate a fresh tomato and loved it. Think of all the delicious fresh garden tomatoes I missed out on for twenty years.

Neither Allen nor I like melon or raisins. If our kid were typical, we'd probably have a completely melon and raisin free house, missing out on all that iron my mom goes on and on about every time I say I don't like raisins. Our child would go places and be rude not eating other peoples melon and raisin fruit salads. But lucky for us, he cares naught for what we like and decides whether he likes or dislikes something all on his own and will eat raisins, melons and peas with abandon where ever they are served.

Since I introduced the idea to him, three years ago or more, Derek hasn't liked anything leafy - green salad, collard greens, beet greens, mustard greens, kale, creamed spinach. Barely a bite. This has resulted in a lot of brocolli and cauliflower consumption at our house outside of green bean and asparagus season. But suddenly this last weekend Derek got excited about salad.

I was going through the vegetable drawer and found some spinach. Derek wandered by and exclaimed "Salad!" He tore off a bite and ate a bit of raw spinach. Who is this? Who stole my child and replaced him with this changeling?

Yesterday we're in the produce section walking toward the wall of salad. "Salad!" he exclaims again and runs over to choose a bag. He even chooses one of the larger bags of your basic green salad mix. I'm still a bit suspicious, so I suggest he choose the smaller bag.

This is where the other part of the title comes in. For the last couple years, Derek hasn't liked to eat at a table. He'll eat while wandering or while watching TV or while playing, but hardly ever at the table and it's a losing battle to get him to sit at one. Last week after school, he ordering me around a pretend school day. He'd pretend to hand me a colored ticket and insist I go to that station. It occurs to me that I can hijack this system school has drilled into his head and make our kitchen table like a station at school. I made a little purple envelope and two purple tickets. Now I give him that ticket and say "Go to purple" and he will go sit at the table.

The potential flaw in the plan is not in the system, but in the person implementing the system. I've made countless resolutions to get Derek to sit at the table, to eat real meals, and so on. I'll get enthusiastic for a week and then slack off and things are back to the status quo. And the guilt and self-berating begins. However, I think I have a new perspective on this. For the last five years I've been pretty consistent about bedtime. I take him through almost the same routine almost every night. So if I can do that, I can establish and consistently take him through a dinnertime routine. School has established this ticket system for me, so I don't have to train him on that. It's good for both of us to sit down together for dinner, so it will reinforce itself soon, like bedtime does. And now I've got both of you gentle readers to remind me. Yay!

So yesterday I implemented the new system. He sat down to dinner. I served salad. He ate some. A flake of snow fell in hell.

Throwing

Derek's been using throwing lately as a way to express that he's upset with something, cleaning up especially, sometimes if the dog eats his food, or I don't understand him. It's not okay and we tell him so, but the behavior continues. I was looking into social stories the other day for Allen and his cousin, and it occured to me that this would be a good way to explain to Derek that it's okay to throw sometimes, playing catch and so forth, but not when you're angry. (Here's a link to the site, if you have no idea what a social story is)

So here is the draft of his story:

Derek Throws: The Pleasure and the Peril

Sometimes throwing is good and fun to do. Sometimes throwing is not okay.

Catch is a fun game. I like to play catch. I know that someone is ready to play catch when they are looking at me and have their arms out, ready to catch. Then it's best to throw the ball right to the person. Then they will throw the ball back and we are playing a fun game of catch!

Sometimes I have to put some garbage in the garbage can or some clothes in a laundry basket. It can be fun to throw the clothes or the garbage in their place. I might even practice making baskets by throwing beanbags into a basket.

It is not okay to throw things when I am angry, sad, or frustrated. I might break the thing I throw or hurt another person. Instead of throwing, I could cry, say "I'm mad!", hit the floor or a pillow with my hands, or take a break.

Throwing things can be lots of fun, if I do the kinds of throwing that are okay.


Ta-da! What do you think, y'all?

Hey guess what!

One of the contestants on America's Next Top Model has Aspergers! Off to bed early, Bebe, Mommy's ogt an addiction to feed.

Gender

I talked before about how we are working on getting Derek to use "me" and "you" properly. And we have seen improvements. Hooray! (Did I tell you about the weird sentences that this would produce? The strangest of all was "I use your penis.")

Our next challenge is getting him to use gendered third person pronouns properly. Right now it's pretty random. He, she, it, is all mixed up and rather arbitrary.

At the crux of using the right gender to refer to people is realizing what gender they are. And I don't think Derek really gets it. He's seen Allen and I naked and has noticed that Allen has a penis and I don't. The old school way to explain gender is the "boys have a penis and girls have a vagina." However, though that is how people tend to get put in gender categories, it's not how we know that people we meet on the street are girls or boys. It's all those secondary sex characteristics that people display. In this day and age they are such subtle cues, too. I'm having trouble figuring out what "rules" for gender to present to Derek. Girls wear skirts, but not all the time. Men have beards, but not all of them. Long or short hair gives you no clue these days. Girls just kinda look like girls and boys just kinda look like boys.

Perhaps we should go be Amish. Oh wait, no Homestar Runner.

Word Wall

This is the time when I wish I had a digital camera that worked.

Derek's teacher has a "Word Wall": a place where she posts words that the whole class knows how to read - two are added every week. (He's starting to read. Have I mentioned that this blows my mind?) Derek made his own "Word Wall" at home this weekend. It has the words "I", "am" "the" and "little." I is quite clear. Am is almost legible. But the other two are pretty much jibberish. Eh. It's fun that he's taking things home.

He's also very excited about lunch. He's playing at packing a lunch and reinacting the school routine at home. He sets his lunch out and puts his lunch box in a laundry basket. He'll pack a lunch for me and make me sit down too. He tells me to "Eat your sandwich." (Notice correct pronoun!)

Other things from school showing up at home: telling the dog to say the months of the year, pretending to hand me pennies and dimes and telling me how much they're worth, "Sit on chairs, not under tables," a new clean up song. Perhaps they sing "Allouette" at school because he's often humming the tune. He doesn't tell me directly, rather he'll reinact things or say seemingly random echolalic phrases and that's how I know something about what's happening. I need to be a bit of a detective. I'm not sure how he feels about the things he is reinacting at home. Are these things he enjoys or things that cause him anxiety?

At home, he's decided that The Blow's "Bonus Album" is his favorite CD and insists on having it playing whenever we drive somewhere. He's also displaying some new play scenarios, like his figures going to the Harley store. He's added motorcycles to his list of things he can/will draw. We stand the drawings up and there's your Harley store. He also loves going on motorcycle rides with Allen. A couple weeks ago they went to the park together on the motorcycle while I was working and when I came home Derek was very talkative and engaged.

That's all for now, but I got a list at home of blog topics, including a reaction to the book "George and Sam" and some thoughts about Derek's diagnosis on the year and a half aniversary.

Kindergarten

Derek started Kindergarten this year in a special class. It’s the middle ground between the life skills classroom and general education. The class is made up of autistic children from Kindergarten to third grade and there is one adult for every two children, the material and class time is highly structured, and everybody knows how to deal with and reach children with communication disorders like this.

Reports have been good. The teacher’s mostly write “Nice dayJ” in the communication log. He doesn’t have much to say about school once he gets home, but he responds well when I tell him it’s time to get dressed for school and comes home tired every day. So I think he enjoys it.

Last night was back to school night. I started the night feeling a bit creeped out being in a school and with lots of upscale parents, continued to feel rather out of place as the school foundation talked about their fundraising projects, like flipping a house in the neighborhood and holding a $50/ticket auction, but the presentation from the teacher was good and she said that working in a school like this has been really great. The teachers in general are supported well. There’s a music teacher, a PE teacher, and a librarian all on staff, which is unusual in any public school these days, apparently, let alone the cash-strapped Portland Public Schools.

(And just that afternoon I was bitching to a friend about how my librarian duties have a lower priority than my janitorial duties on a daily basis and how that makes me cranky about my job. So I know the teachers there are happier in their jobs than I am in mine. But that’s another story.)

The special ed classrooms are integrated into the school and the children there are the school’s children, not just special ed’s kids. They get exactly the same curriculum as the general ed classrooms, not ten year old hand-me-downs. This is fantastic because the idea of these classrooms is that the children in them need behavior and communication accommodations, there is no need for them to be behind their peers academically or have ancient books. They can step right into the general ed classrooms, they’re in the same place in the same books. One of my biggest concerns placing Derek in this classroom was that he wouldn’t get much contact with typical children, like he did in his preschool, that he’d be shut away, separate from the rest of school. I’m still a little worried, but hopeful overall. I was also glad that the classroom has toys and colorful bulletin boards and art hanging from the ceiling. It’s not dreary and bleak.

I also learned that Derek has picked out a few kids in the class that he favors. He wants to sit by them in circle time and pokes them to get their attention. This is good news! Last year in preschool he didn’t seem to have much preference or desire for playmates. I’d ask about who to invite for a playdate or over for a birthday and his teacher would have a hard time coming up with anybody.

And it’s for free! (Well, except for the fundraising and selling and donating and auctioning and appealing and flipping the neighborhood house.)

Baby's First Pun

Derek’s had a bit of an obsession with lights and light bulbs lately. He keeps moving the light bulbs to different sockets around the house, so we’ll find the refrigerator light bulb in the hanging lamp downstairs, or he’ll insist we put the burned out bulbs back in the sockets in the basement. He’ll turn the lamps sideways to get at the bulbs and carry them around the house. And since we are trying to save the world one three-dollar energy efficient tiny twisted florescent tube bulb at a time, Allen and I get a little cranky when we find broken ones stuffed in odd corners.

So Allen and I were nearly comatose Saturday while Derek’s jumping around being silly. He gets one sock from his sock pile – just one, he makes a note of – and then starts jumping around on our bed and messing with the lamp. And then it comes onto me all at once – sock, socket!

Me: “No socks in the socket! Are you crazy?!”

Derek: [Manic giggle] “No socks in the socket!”

[Hilarity ensues]

It's the country life for us

This weekend we visited Allen's relatives living just outside of Bend. Each year on this weekend they have a large family reunion/cook out. I made pie and people loved it. Allen made Derek take a nap and I loved it. The dog ran around like a maniac and we all loved it.

The property out there is a sort of a compound. There's a central single-wide mobile home and several additional trailers, greenhouses, and mysterious buildings. (Tornado shelters?) We slept in one of the RVs. I was mostly grateful that it was horizontal and free, but Derek adored the accomodations. He'd wake up in the morning and chatter on and on about the trailer - the curtain, his bed, the dog's spot, a sink, the light with no light bulb, the mirror, the windows, the doors, the local puppy coming to visit and going in and out and in and out and in and out, oh, oh!! There is not a snooty bone in my kid's body.

Yay for Speech Therapy

I was in a bit of a funk over several things, over a lot of the summer, and was getting a real good funk on when our speech therapists transition from temporary to permanent employee or some such ended and we had our first appointment with her in ages. It brought me out of the funk a bit and helped me re-focus on Derek and get over myself a bit. I saw her be successful interacting with Derek and that gave me some hope that I can also be successful interacting with Derek and not have most of my day consist of yelling "Derek! Bebe!" across the room progressively louder and louder and getting no response whatsoever. I can chase him around the yard with a frog puppet. I can hide toys so he has to ask for them. I can bring a new set of toys in so he can transition from his tired old theme that has me about to stick a fork in my eye to a new and exciting play theme. I have a strategy to respond to him mentioning for the 3,465,987th time that the neighbors cut down their giant tree. (The strategy is to respond like he's sharing a memory - remember that time the neighbor's cut down their tree and it radically changed the shade in and view from and into our yard? Yeah, I do. And it makes me annoyed.)

In other news, my computer is breaking. Today I found the blue screen of death when I came down in the morning. So I'm backing up a lot. Also on our list of new electronic equipment is a digital camera and a printer. They're broken, too.

This weekend we'll be going to my husband's step father's biological father's new wife's family reunion in Bend. Also know as the chase-Derek-in-the-high-desert 10k relay.

Sometimes we're happy

Sometimes we're sad. Sometimes we don't wear pants. Sometimes we're bored to tears and want to stick our heads in the oven. Yay summer!

I know I haven't blogged in forever. Oy. Sorry about that. So here's some brief updates:

Sucky things:

I had big plans for the summer: new health insurance that would get us access to new therapists who would teach me things about how to set up a home therapy program, make realistic, challenging, meaningful goals and then achieve them. Then I ran into an insurance catch-22 and couldn't go through with those plans.

Over the summer Derek seems to have regressed a bit. He's better off than he was this time last year, but not doing some of the things that he was doing in June. I think the change from the familiar routine to practically no structure or routine has him a little disoriented. I was chatting with another mom who has two typical kids experiencing the same disorientation and crankiness, so it's not just Derek, but it has impacted his social and verbal skill gains. Bleh.

Playground pushing. More of it and harder. He pushed a toddler down some concrete steps the other day. And today pushed an older kid over so hard he knocked the wind out of her.

Good things:

Derek is interested in playing catch. We've been tossing a ball and balloons back and forth for several turns, much more than previously!

I've been going to therapy on my own, which has been really helpful, shockingly enough to me. It's useful for me to sit back and look at my own patterns of behavior and the reasons behind them. Then I can remedy the situation.

I've also investigated some support groups of other parents dealing with autistic children in the area, and it looks like that will be a positive experience.

I've been working on Derek's pronoun confusion and it's starting to show. He thinks one of my names is "me" and one of his names is "you". So if he says "Fire on me!" he means that I'm the one on fire, not himself. If he says "It's mine!" he means it's for me, not himself. See how this can get a bit confusing? And it's worse to explain it or correct him. It turns into a "Who's on first?" routine. So the speech therapist and I concocted a strategy to try to show him what he means. When he says "Fire on me!", even though he makes a gesture to throw the fire on me I act like the fire is on him. When he says "Come get me!" and tries to chase me, I act like he asked me to chase him. See? And I've noticed him using the correct pronoun more often, even in interactions where it's just him and me.

The car is fixed.

Don't make me pull this grocery cart over . . . .

You know what I've about had it up to here with?

Compulsive behavior.

The other night Derek had a complete meltdown in the middle of the grocery store because we couldn't go on checkout 7. And in one of my less proud parenting moments, I nearly joined him. For chrissake, what do you do in that situation? Stand there and unload the groceries at the closed checkstand? Ask a clerk to open it? Leave the groceries? Leave some money on the checkstand to cover it and walk out? Leave him at home to set the house on fire and go grocery shopping by myself? Yell at him to suck it up and go through the checkstand that's open and give anybody who wants to think about criticizing me the death stare? That last one will get the job done, but cleaning up the bodies, and the ensuing indictments and prosecution, is a little messy. Perhaps there is a solution that avoids the rigidity all together?

Other compulsions, so y'all know what I'm dealing with here:

Only wants to ride certain numbered buses at certain times.

Refuses certain types of transportations sometimes, but not others. (For instance, usually okay with the bike, but not always)

Won't go down some aisles in the store.

Refuses to ride yellow or blue line trains. Will only ride the red line.

Will not walk down the street when a light up ahead is green, only when the light is red. Actually getting better about this, but it's still a very slow process to get down a busy street. Downtown Portland is nearly impossible.

Sliding doors. He must be the one who controls them, so we have to wait for them to close completely before we can go, at busy times, that's five minutes or more.

Insists that stove dials be turned to a certain number (not always the number I want) until I yell at him that it's not his job and he runs away crying.

Must control what number of minutes the microwave is set for. Often too much or too little.

How do I convince him it DOESN'T MATTER which checkout we go through, just that we go through one? It DOESN'T MATTER which bus we take, only that we get to speech therapy on time? That the number on the stove dial or the microwave dial DEPENDS on what we're cooking, not on his whim? And how can I get my groceries delivered for free so I don't have to put up with this crap?

(That's lipstick in the picture, by the way)

Autism Tai Chi

In the movie Twin Warriors, Jet Li's character, Junbao discovers the principles of Tai Chi. He tries to push a ball into a barrel of water, but the harder he pushes, the more the ball resists, flying higher and higher into the air. He tries to knock down a punching bag with a weighted bottom. Again, the harder he hits, the more momentum comes back at him, opposing the force and intention that he originally wanted. He discovers that by leveraging the force an object already has, he can be a more effective fighter for less effort.

Today I made a connection with this principle of tai chi and dealing with autistic symptoms with this principle in mind. We had a family outing to Lowe's today to pick up a few things. Derek wanted to go through checkout number 10, but it wasn't open. He was leaning out of the cart and grabbing the racks to resist that checkout aisle. We could have fussed and yelled and forced him to go through the checkout he didn't want to and dealt with an epic meltdown. But instead Allen made a game out of Derek's resistance, rocking back as Derek pushed away, then rocking forward again, back and forth, back and forth. Derek actually started to think this game was kinda fun. But he still didn't want to go through checkout eleven. So we put our things on the counter and I pushed the cart through checkout ten, coming around to pick up the stuff at checkout eleven. That little bit of accommodation and "indulgence" saved us from a lot of misery.

The same principle applies to dealing with self-stimulatory behaviors. For Derek this is stuff like humming, pushing buttons, and flicking light switches. I've learned, slowly but well, that these things satisfy a need for him, not a want, and can't be forced into submission. They need to be recognized and worked through, not against. I try to make them into an opportunity for connection and social interaction. For instance, when he's humming, I hum along with him and then change something about it—hum higher or lower, faster or slower, change the tune, add words, put his hand on my lips to feel the vibration, etc. When he flicks light switches I'll pretend to be scared of the dark, or try to scare him with a playful "Boo!" when he switches on the light. And from there I try to move into an interaction, leveraging the "undesirable" behavior into desirable.

Patience, grasshopper.

A lovely moment between Derek and Iguana, when I finally stopped using the flash and got a picture in which Derek doesn't look quite so stoned.

One of Derek's favorite interactive games is the Iguana-Pig Feud. Iguana is usually going along minding his own business when Pig comes along and tries to eat Iguana's body parts. Hilarity ensues. Sometimes Iguana makes a compromise with Pig, offering a different body part instead of the one he would like. Iguana often runs away and Pig gives chase. Iguana's newest trick is to hide on top of Pig. That's a pretty fancy trick for somebody who has a hard time taking someone else's perspective. Sometimes Lizard gets into the act. (Lizard is the puppet in the set that is actually an iguana. Iguana is actually a gecko, I believe.) Lizard says "Lizard, Lizard" and also enjoys Iguana's tail and chases and Iguana sometimes hides from Lizard by hopping on Lizard's back. Iguana is also sometimes a transition object or cuddly guy. Once I thought we lost Iguana. We retraced our steps from our last walk, looked all over the house, and told the neighbors about our terrible loss in case they saw anything. A few days later the neighbors inquired about Iguana and I told them about how you can find anything on EBay and how Iguana may soon be miraculously found.

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.

What I like about him

I'm attending a class on person-centered planning to help prepare for the (eek!) IEP process. The object of the class is to take the content Allen and I are experts in, knowing our child the best of anyone, and organize it into a structure that we can present to professionals to communicate our plan for Derek's development and the sorts of services he needs and allow the professionals to get to know him in a way that's based more on attributes and strengths than deficits and problems.

In our first class we went around and introduced ourselves and talked about our children. Most of us said what sort of disability our child has. Then we wrote down the gifts and accomplishments and went around again. The pictures we got of our children changed dramatically. Here is my list of what I like about Derek:

Easy on the eyes.
Loves to hug and cuddle.
Persistent, tenacious, determined. (I was going to say stubborn, but it's all about spin here.)
Independent, entertains himself well.
Can be quite good in boring, kid-unfriendly situations such as courtrooms and master's thesis presentations.
Fantastic in the car, bus, train, bike trailer. Enjoys traveling and rarely fusses on long trips.
Very smart about mechanical/computer cause and effect relationships.
Gets what he wants despite serious communications challenges.
Resourceful and observant. (I was going to say sneaky, but again, spin.)
Sings on key and has an excellent memory for songs.

I think there are more, but I'll leave it at that for now. I also have to think about what makes a good day and a bad day and what is important to Derek before next class. Hmm.

Little People

This summer we got the Little People school bus and it has been in the top five favorite toys ever since. Here all seven Little People are pictured in a jewelry box. Turns out I don't actually have a good picture of the bus. I'll need to remedy that. It's a great little toy.

First of all, it rolls. And you can line it up with other cars and trucks the same size. The Little People can get on it and off it. It used to say several stock phrases and sing "Wheels on the Bus." Then it got dipped in hot bleachy water after an intimate encounter with some dog poop. Thank God. This was the gorgeous silver lining to scrubbing feces out of Lego people.

Now the Little People pretend to go many of the places Derek goes in real life. They go to OMSI, get pizza, get haircuts, go to the grocery store and the merry go round, and wait for the bus. (I'm waiting for the day they run to the bus stop bench and say "Goddamn it, missed the bus!" the way Derek and I do.)

Eating pizza can stretch for about an hour. Each of the six Little People had their own color of playdoh that got opened, squashed, and put in the oven for a few seconds. Then each was transferred in front of a Little person. Then Derek cut them all. And counted them several different ways and came up with several different numbers. (Perhaps you all will believe me if I tell you there were six Little people and 13 pieces of pizza. Derek did not. Apparently the number of Little People at the table is one of those lies your parents tell you, like how they used to be cool and listen to rock and roll.)

In other news, I met with the special ed preschool teacher today to add one day a week of preschool. Officially the reason is that he's making slow progress and he didn't get the STAR program when he first started. Feh. I think that a big part of the reason that early diagnosis of autism is so important is that it takes awhile to learn to negotiate the bureaucracy. This one was pretty easy. All I did was request it and in a matter of days we met and signed the papers. I did have a bunch of evidence from the speech therapist and another parent if I needed it, though. And then I forgot to get the picture schedule materials, which was the main reason I needed to visit in person. Doh!

And here's a picture of my dog for no particular reason:

Someday he will die, but I'll always have this to remember him by.

Butter Obession

Here is a list of places in my house where I have found sticks of butter:

Between the couch cushions
Under the chair cushions
In the end table drawer
At the bottom of the toy box
In the laundry basket
Under the couch
Between a chest and the wall
Derek's dresser drawer
In the crap trough between my bed and the wall
My bed before I got in it
My bed after I got in it
Within an old tarp in the basement
The refrigerator

I don't know why Derek has this obsession with hiding butter. He used to hide many other foods around the house, so as you were cleaning you would find random stashes of sippy cups with green milk, caches of nuts, or peporoni sticks. When he was about 18 months old, we used to joke that the other children at day care might talk more, but our kid had survival skillz. Now it is just butter. We have no idea why.

Kitty Kitty

About a month ago Derek crawled under the china hutch. This is one of the cat's fortified anti-dog positions*, so when Derek crawled under there, he looked like the cat and I called him kitty-kitty. I expanded on the idea and fed him goldfish crackers from a tiny bowl. He ate them without hands and meowed a lot. A phase was born.

He also likes being scratched and petted and cuddled like a kitty. He also insists on being called kitty-kitty. So I'll say "Derek, time to get dressed," and he'll say "Meeeoow!" so I'll have to say "Kitty, time to get dressed" to get results.

I was parent-helping at preschool a week ago or so. Derek started randomly meowing at the table and the teacher barked back. Pretty soon all the kids at the table were meowing or barking at Derek and each other. They seemed to be pleased that they could engage Derek in a game. Derek was really happy to be part of the snack time conversation, giggling and quivering.

I think he's figured out that he can just meow when a response is required of him. When you put him on the phone to say hi, he will meow. He also uses this technique with all those pesky strangers that ask incomprehensible questions. So you get conversations with people like this:

Stranger: Hi little boy, do you like grocery shopping?

Derek: Meoooow

Stranger: Helping your mom, huh?

Derek: Meoooow

Stranger: How old are you?

Derek: Meoooow

Stranger: What's your name?

Derek: Meoooow

Stranger: Nice coat, do you like motorcycles?

Derek: Meoooow

Etc.





*Smokey Cat's Dog-Invasion Diary, Day 123: A random pile of boxes dropped by the humans has further fortified my bunker under the china hutch. Executed three successful strikes on dog's nose. Victory is eminent!

We Begin

It really began about a year ago when I noticed that Derek really wasn't doing the things that other kids his age do, mainly talking. He was three and a half and spoke a few words and phrases a day. I got the feeling this was more than late blooming. By late March/early April I had the diagnosis: Autism Spectrum Disorder. Since then we've been navigating maze after maze and plumbing mystery after mystery. Why does he do that? What should we do about it? How much money do you want for that? How can I get something like that, but for free?

I decided to start this blog to keep a record of Derek's progress. He improves day by day, but sometimes so incrementally it can be hard to notice. The memory of screaming before dinner may fade away and I'll need a reminder of how hideous it used to be. Or I'll wonder if he used to always burp over and over before bedtime. Plus, people who work with him can get to know him as more than a bundle of problems they get paid to solve, friends and relatives from far away can check in on his progress, or random strangers can think "Thank God I'm not her." Whatever does some good in the world, eh?