The last eleven years

It had been an uneventful pregnancy. I'd been a little bit sick, gained a little bit of weight, and felt a little bit like a beached whale when I walked into the doctor's office for my 37-week checkup. My doctor was on vacation, so his partner did the exam. "Have you measured small throughout your entire pregnancy?" she asked as she held the tape measure to my belly. "You're only 31 centimeters." She checked the chart, gave me a puzzled look, and scheduled me for an ultrasound four days later. "Try not to worry," she said as I left the office.

I worried. This was before the days of Google, so I did Altavista search after Altavista search, coming up with so many scary articles on low amniotic fluid, IUGR, knotted umbilical cords, and enough other frightening possibilities that I hardly slept at all the next three nights. That Friday, the radiologist estimated that the baby weighed four and a half pounds, and we elected to induce right away. When Bryce was born, tiny, screaming and apparently healthy, we thought we were in the clear.

As first-time parents, we didn't know what to expect. When he wouldn't nurse, we thought it was normal to rent a hospital pump and work on it until he finally caught on (a month of struggle later). When I noticed that he nursed better when Eddie was doing the dishes, I started nursing him sitting on the floor with the water running. When he screamed every time we put him in the car, I just thought that was what babies did.

Bryce was a hard baby and toddler, but we just chalked it up to having two high-strung parents. When he started preschool and the teacher wanted to have him evaluated because he wouldn't play with the other kids and didn't sit at circle time, we thought she was a little high-strung too. Our little boy was perfect-- she just didn't have the energy or the ingenuity to keep up with him. Eventually we did consent to an evaluation, once the principal of his preschool said he wouldn't be allowed to stay unless we did. A woman from the school district had us fill out forms, then she talked to the teacher at length, and then she observed him at school a few times. On the day when she was supposed to observe him in his home environment, I greeted her at the door, and instead of watching him playing with his little sister or dressing up like Buzz Lightyear, she told us right away that she had enough information to determine that he was on the autism spectrum.

Autism? That was crazy. My boy didn't have autism. He had great language skills. He was already reading, in fact. He was just busy, that's all.

But along with a diagnosis of an autism spectrum disorder, the school district would let him go to five days of preschool (including two days at the fancy preschool we were sending him to but really couldn't afford), at no cost to us. At the time Ed was a resident, and we were poor, and free preschool sounded like a pretty good deal, even though we knew in our hearts the diagnosis was wrong. It didn't do much to establish credibility that three or four of our friends with boys Bryce's age were evaluated by the same team of people and also put on the spectrum. It seemed like our town's answer to busy little boys.

The next year of preschool was great. The special ed teachers were incredibly encouraging, and he did really well in the mainstream preschool too. In fact, at the end of the year, the preschool teacher pulled me aside and said, "I know I shouldn't tell you this, but I think that Bryce has ADHD, not PDD-NOS."

We moved to Texas a few weeks later, had him reevaluated by our pediatrician there, and he met the criteria for ADHD but not PDD-NOS (in all fairness, the criteria are pretty subject to interpretation). He started mainstream kindergarten that August.

For the next few years, Bryce did pretty well. He'd have years where he flourished (first and second grades were great) and grades where he didn't, but I figured that was normal. I didn't harbor any illusions that he was an easy kid, and I felt like I spent a lot of time apologizing for him, but I also thought that we were on an upswing. He had as many friends as he wanted to have, which wasn't many, but I figured that not wanting to have a lot of friends was just a guy thing. After all, Eddie never had a best friend, and he'd managed to achieve some pretty great things in life. Bryce was just quirky and a little hard. If he studied presidents obsessively, if he insisted we see every animal in the St. Louis zoo in the same order every single time, that was just one of the quirks of being a kid.

Two years ago we moved to Utah. When we took him to meet his fourth grade teacher, I could see her eyes growing wider and wider as he paced around the room the first time. We added anxiety to his diagnosis. Soon, my nine-year-old was taking three pills every morning. Fifth grade started better, but by the time you're in fifth grade, there's not as much allowance for pacing the classroom, people notice that it's weird when you pick your nose. It became evident that Bryce was not just busy, not just "a little quirky" (as we overheard one of his teachers and the counselors discuss strategies for confronting us while in the hall during parent-teacher conferences), but that he might, in fact, actually be on the autism spectrum.

If it hasn't come across yet, I'll admit that I did not want Bryce to be on the autism spectrum. I didn't feel in my gut that it was right seven years ago when they diagnosed him with PDD-NOS. I didn't want to think about what it would mean for my child-- would he be able to go to normal school? Would he drive? Would he serve a mission? Live on his own? Get married? Hold a job? I knew lots of people with ADHD who did all of those things, but I didn't know a lot of people on the autism spectrum who did. Truth is, I just didn't know a whole lot of people on the autism spectrum at all. Eleven years after the fateful day when we brought him into the world, we were still filled with worry when it came to Bryce.

But over the last year, I've started to give up some of that fear. If we had him reevaluated today, I know he'd meet the qualifications for having Asperger's Syndrome. The things that could have been quirky at four are definitely more than quirky at eleven. But Bryce is also smart, sweet, and endearing in his own way. At times he can come across as incredibly clueless or insensitive, and then there are times like the other night when Isaac was upset over a lost toy, and Bryce took twenty bucks out of his wallet and told me that he wanted to buy Isaac another one.

I want the best for my son. I want him to be with people who appreciate him, quirks and all. I don't want him to be someone's "project." If the best thing I can do is fully embrace a diagnosis of Asperger's, even if it's belatedly, that's what I'm going to do.

A few months ago we talked with Bryce about it. He doesn't like it when I tell people that he has ADHD, so I didn't think he was going to be happy when we told him we thought he had Asperger's. When we told him what Asperger's was and said we thought he had it, his response was "sounds about right." If he's not worried about it, I guess I shouldn't be either.

This summer, in an attempt to be (belatedly) proactive, Bryce is going to eight weeks of camp with other kids like him-- kids with ADHD and Asperger's, kids living in the gray area where no one knows exactly what to call it. His counselors are confident that he'll have a great summer, and I hope he goes back to school in the fall ready to be a success.