And so it begins

The boy child had his first official session of cognitive behavioral therapy today with the child psychologist, Dr. H, and by all accounts it went pretty well. Dr. H took the boy outside a few times to see how he reacted, but the boy was having a pretty good day with regard to the outdoors so he didn't get to see much.

They did a writing exercise wherein Dr. H asked, "What's the worst thing that could happen to you outside?" The boy child wrote, "I could get stung by a wasp, stung by a bee or bitten by a mosquito." Dr. H wrote underneath, "But I've never been stung by a wasp and I've only been stung by a bee once - in 1st grade." Then Dr. H asked, "What's the worst thing that's ever happened to you outdoors?" The boy wrote, "I was stung by an entire nest of yellow jackets." Which is not exactly what happened, but more about that later. Under that, Dr. H wrote, "But that was when I was three years old and it hasn't happened since." Then Dr. H asked, "What's the best thing that could happen to you outdoors?" The boy wrote, "I could play with my friends and play sports." Below that, Dr. H wrote, "Every day."

What actually happened when the boy child was three was that he was in the backyard scooting around in this plastic truck my parents had gotten him, and he was barefoot. Unbeknownst to us, some ground hornets had taken up residence in one of our sprinkler system reservoir thingies. It had a cap on it with a little hole, and some hornets got down in there and built a nest. When the boy rolled over it, a couple of them flew out (NOT the entire nest) and one stung him on his toe. Later, DH went out to investigate and the hornets swarmed and stung him (he was okay though - just ouchy for a while). The boy was safely in the house, watching out the window as this happened. We think he's melded the two memories in his mind so that he thinks HE was swarmed and stung multiple times. So we're going to have to talk with him about that and try to separate out the reality of what happened.

At any rate, the boy child really likes Dr. H and DH and I like him, too. I personally find that he has a comforting way of putting things into perspective. I told him about the field trip on Wednesday and the subsequent setback with the fire drill, and he pointed out that while the boy child was upset after the drill, he WAS able to walk to the car with me after school without running and screaming and soforth. I didn't have to carry him or pull the car up to the front door of the school. He didn't cower under his desk, refusing to go outside at all in case there might be bugs. So if you created a scale with possible levels of severity, the boy's reaction was really not all that bad. I feel somewhat better thinking about it in those terms.

DH and I have started to put feelers out for networking and support groups in our area. We'll have access to more services like this once the boy child is in the system at school. Apparently, there are a lot of services in our district for Autism/PDD. Good news!

Field trip

The boy child had a school field trip today, and I went along ostensibly to chaperone but actually to act as his personal aide for the day. The first hour of the field trip was to be spent at a neighborhood park, and the second hour at a nearby grocery store.

The park was the problem. You see, since toddlerhood the boy child has been afraid of flying insects. The severity of this fear has waxed and waned, sometimes approaching and even surpassing the level of a phobia (picture a solid hour spent curled into the fetal position, absolutely inconsolable, screaming himself hoarse because he saw a fly in the house), sometimes forgotten altogether for months at a time. Right now, at this particular time, the fear is so severe that the boy child now refuses to go outside for recess. Refuses to go outside at all, in fact, unless he is wearing long pants and a hooded sweatshirt that covers his arms, neck and head. And even then he cowers against me, jumping and screaming if so much as a leaf skitters past on the sidewalk. It was the extreme nature of this fear that led us to consult a psychologist in the first place, which resulted in the Asperger's diagnosis.

And so, I went along to the park. I met the boy child as he got off the bus and assumed the position we've adopted for walking outdoors, him pressed into my side and my arm wrapped around him, shielding him from any bugs that might be in the area. He was fully zipped and hooded but otherwise didn't seem all that anxious. In fact, as we walked into the park, he drifted from my side and walked with a friend instead. He and his friend chose a spot at a picnic table and, after making sure there were no bugs on the bench, the boy child sat down and ate his lunch with no sign of anxiety whatsoever. Awesome!

Even better, after lunch the kids were given leave to play, and the boy child and his friend darted off to the swings. It was quite windy today and his hood kept blowing off, so he finally decided to leave it off altogether. This was HUGE for the boy child. "I'm feeling brave enough to do this!" he told me excitedly.

My biggest concern when the boy child was on the swings was whether or not to offer to push him. Had we been alone at the park, or around kids he didn't know, I would have stepped in and done it immediately. You see, the boy child doesn't really have the hang of how to work the swings. He knows there's something to do with moving your legs forward and back, and leaning this way and that, but he's never been able to figure out how to put it all together. But I soon found out that he wasn't particularly embarrassed about it. "I don't really know how to swing," he told his friend, who was very kind and tried to instruct him. "That's something Jennifer is going to work on with you," I said, referring to his occupational therapist. "Oh boy!" the boy child exclaimed. "I can't wait until my therapist teaches me how to do this! Hey mom, can you give me just ONE push?" So I did.

And then they were off again, running around the playscape, laughing and playing tag and acting like ordinary boys. The boy child showed no fear whatsoever. It was like all of his anxiety had been magically washed away. At one point he unzipped his sweatshirt. "I'm feeling really brave today!" he exclaimed. And some point after that, when he was all sweaty (it's in the 80s here), he actually...

Took. It. Off!

I'm not sure I can express what a huge, HUGE step this was. He was outside! And having fun! And he TOOK OFF HIS JACKET! The jacket that's been his suit of armor for more than a month now! I could not believe it. "I'm feeling extra, extra brave today, Mom!" he shrieked. "I feel so alive!" (Yes, he really says things like that. HOW CUTE IS HE?!) So I held his jacket for him, and while I saw him fidget with his bare arms and suddenly blousy t-shirt a few times, he wasn't afraid. "I'm so proud of you!" I yelled when he ran past. "I'm even more proud of myself!" he yelled back.

After the grocery store part of the field trip I headed back to the school because it was almost time for dismissal. As I sat in my car in the parking lot, reading a book, I heard the school's fire alarm go off. Oh, great. The boy child spent most of his kindergarten year in a constant state of anxiety because on his very first day of school, the fire alarm went off. He still had a lot of trouble with loud noises back then, and he was sure every day when he went to school that it would happen again. Which, of course, it did from time to time. Fire drills reduced him to tears. Once the alarm went off when he was in the bathroom at school, and he went through all of kindergarten and most of first grade refusing to use the school bathroom because of it. He's gotten somewhat better about fire drills since, but he still doesn't like them. And he was having such a good day today! Drat!

So when dismissal time finally rolled around shortly thereafter and I went inside to pick him up, the boy child was fully zippered and hooded again, hunched into himself. And then he tearfully told me that while he was outside during the fire drill, a bunch of bees were swarming around him. And so now, all the bravery that he felt earlier, all the joy he found in playing outside for the first time in over a month, has vanished as though it never happened. We're right back to square one, and he is terrified to even walk from the car to the front door of the house.

And I? Am pissed. Not at him, of course. And I guess I can't be mad at the school for conducting a safety drill. I mean, that's a GOOD thing, right? I don't know who I'm mad at exactly, but I'm just so frustrated that for one brief and glorious instant my child was without fear and felt so good about himself, and now even that tiny speck of hope has been snatched away again.

The doctor

I am sick with a chest cold or upper respiratory infection or something, and the boy child is very concerned. Part of his concern is that he doesn't want to get close enough to me to catch my germs. The boy child's perseverative thoughts/behaviors -- the OCD-type characteristics that go along with Asperger's -- don't usually involve germs and handwashing and whatnot, but if someone is ill, he keeps his distance as much as possible.

And yet, because of his extensive knowledge of medicine and biology, he is interested. Yesterday he interviewed me in great detail, asking the specifics of each of my symptoms and writing them down in a notebook. Several minutes later, he handed me his "prescription" written on a baseball-shaped sticky note:

DO

• drink lots of water
• eat SOFT food like soup or yogurt
• rest a lot
• relax

DON'T

• drink milk
• eat chewey or crunchy foods
• be active

Today he interviewed me again, asking whether each symptom I'd reported yesterday was more or less severe today, and whether there were any new symptoms. He offered to come up with another Do/Don't list based on the changes I reported, but I told him I thought the one he already gave me was working great.

It's nice having a doctor in the house!

Welcome to Donkey Burger

What is "donkey burger", you ask? It's the phrase my nine-year-old son uses to refer to his Asperger Syndrome. (Think about it for a minute - you'll get it.) He has decided that if someone is hassling him about his tics or his avoidance of bugs or any of his other myriad quirks, he will just say, "Lay off, dude! I have Donkey Burger!"

It's as good a name as any.

We had a feeling almost from the start that something was not quite right with the boy child, but it was never anything you could put your finger on and say, "Aha! That's an unmistakable characteristic of XYZ Syndrome!" As a newborn, he didn't like to be swaddled or cuddled. He had problems nursing, slept a lot, and would sometimes scream as if in pain for no apparent reason. So we learned to let him lie on our laps rather than cuddling him, supplemented nursing with formula to bring and keep his weight up where it should be, and dosed him with various anti-colic remedies. And he was a truly delightful baby with a predictable sleep schedule, a laugh like a squeaky gate, and a fondness for visual contrast and silly noises.

The boy child didn't walk until he was 15 months old, which is not all that late, really. When he got his DTP shot shortly thereafter, he stopped walking again for a week or so. Once he was mobile, he loved to explore and touch everything. He studied things - opening a door over and over and over again to figure out how it worked, practicing new skills over and over until he had perfected them. His approach to everything - crawling, walking, talking - was deliberate and methodical.

As he blossomed from toddler to preschooler, a few more issues became apparent. The boy child had an ungainly gait. Getting him dressed was difficult, because he had poor body awareness and was not able to anticipate what came next - first one leg goes in the hole, then the other leg goes in the other hole, then we pull it up, etc. He was not able to accurately put his body into a position that allowed me to reach and dress him easily. He either stood too far away, or flailed around to the point that he would accidentally hit me or undo what I had already done. So he learned to stand or lie still as I fluttered around him, pulling arms and legs and heads through holes (but the latter quickly, because he didn't like anything touching his face). He complained about the tags in his clothes and I had to cut them out. Loud noises upset him tremendously, as did any change in his routine. But still, he remained a pleasant and generally cheerful child. He began to develop an astounding vocabulary and taught himself to read at age three.

When the boy child was not quite five years old, we enrolled him in half-day preschool three days a week to prepare him for kindergarten. Preschool was very difficult for the boy child. The atmosphere was chaotic and noisy. Once when I arrived to pick him up, I found him crouched under a table with his hands pressed against his ears. He had problems playing on the playground equipment. He didn't like to walk on unstable surfaces or surfaces that he could see through. He continued to have motor planning difficulties and low body awareness. He didn't seem particularly interested in children his own age, preferring instead adults or children who were much younger than him.

The boy child has always lived in his own head much of the time. We used to joke that he had the opposite of ADD - it's impossible to distract him when he's focused on something. Because of this, the first thing I considered when we became aware that something was up, was autism. But the boy was so interactive! He enjoyed humor, he conversed with us and joked with us, he was aware of his surroundings most of the time. He didn't zone out to the point of being completely unreachable - he was just hard to engage sometimes. And so instead, we looked at sensory processing issues and thought we had found our answer.

In the summer between first and second grade, we had the boy child evaluated for Sensory Integration Dysfunction and he came up positive. He began working with an occupational therapist on fine and gross motor skills, dyspraxia, and social interaction and made tremendous progress. We attributed all of his quirks - the extreme interest in and knowledge of various scientific subjects, his preference for reference books rather than fiction, his difficulty making friends, his poor handwriting, etc. - to SID and attempted to address them with occupational therapy.

However, there were some underlying issues that weren't going away. The boy child showed signs of obsessive thoughts and compulsive behavior. When stressed, he developed tics - throat clearing, shrugging, finger snapping, neck rolling, blinking, etc. He developed extreme phobias that greatly interfered with his quality of life. A trip to the pediatrician had us gearing up for a possible diagnosis of anxiety disorder, obsessive-compulsive disorder, specific phobia, and/or possibly Tourette Syndrome.

And then we visited a child psychologist who deals with this sort of thing. And just yesterday, we got an actual diagnosis - one that has suddenly completed the puzzle of the boy child, rendering all of his unique characteristics comprehensible. The boy child has Asperger Syndrome/Pervasive Developmental Disorder. And it makes so much sense now. Now we can move forward with getting him services at school, and we can come up with a plan to cope with the perseverative thoughts/behaviors, and the boy child has a shot at learning how to cope with all of this before nature decides to throw hormones and whatnot into the mix.

Now, we have Donkey Burger.