Friday, June 3, 2011

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.


Courtney said...

It sounds like you've all made big strides in the past 11 years. My favorite line in the post was Bryce's "Sounds about right" - I hope camp is a huge success.

Blue said...

From one proud member of Team Bryce to another...I just want to say how glad I am he has you and Eddie as parents. If every kid had people like you in their life, all childhood would be magical. Bryce is going to be fine. And he'll definitely change the world in some very good least the (fortunate part of the) world that crosses his path.

And we're due for another Nickel Mania trip...I've got a bag of nickels with his name on it :-)

Reluctant Nomad said...

I just read the Connors report from my littlest's teacher yesterday. And bawled through the whole thing.

Normal seems illusive, and sometimes, in my very human soul, I get angry about it.

So I understand the process that you've described here (fear, grieving, anger, denial, reluctant acceptance, cheerleader for your kid). They're all stages I've gone through with my oldest as well.

But in facing it again with the little one, it seems like a bad dream.

So I was glad to hear you describe these stages, it helps me identify that this is a process that I've got to face. And the hope that I'll come out of it happy and healthy on the other side (and so will the kids!).

Sarah said...

There is nothing that can truly prepare us for the stress and worry of parenting, but the infusion of love that we gain when we hold our newborn baby seems to get us through it all. Bryce is going to succeed in life because you and Ed give him love.

Hope the camp is a wonderful starting point for all of you.

Michelle said...

Ah, I wish I'd read this before our run this morning. I don't think you are belatedly proactive-- it just takes a long time to sort these things out. I hope the camp is wonderful in every way.

Anonymous said...

Shelah- thank you for posting this. I am in tears right now... reading about your eleven-year old feels like reading about my eight-year old (with some differences here and there).
Can you tell us more about the camp Bryce is will be attending?
Thanks again!

FoxyJ said...

Growing up I was always a 'quirky' kid. My cousins still treat me as the 'weird one'. I was the kid who refused to go to first grade without my stuffed Shamu, and he had to sit on the rug with me and everything. Then I was the fifth grader who would corner people and recite a half-hour long lecture all about whales with every fact that I knew.

A few years ago I began reading some stuff about Asbergers and suddenly my life made so much more sense. Having a possible diagnosis that "sounds about right" is actually freeing. It's also made it easier for me to become more self aware and to be better able to practice the social skills I need, rather than just sitting around wondering why I always say the wrong thing. I also know that my mom is resistant to the idea that I might have Asbergers--I think she worries that it reflects badly on her. I think you have a good attitude about it; it can be hard to accept it when your kids aren't how you wanted them to be.

Shelah said...

RN- I'm so sorry to hear that you're going through the whole saga again. I hope your transition with your boys is good.

thisisgettinggood- The camp is called Camp Takoda. It's done out of the University of Utah and is based research by William Pelham (formerly of the University of Buffalo). The website is

FoxyJ- Thanks for your story. Maybe I do have some Asperger's success stories around me that I just don't know about. That's really heartening to me. :)

Sarah said...

Thanks for sharing this, Shelah. Bryce is a lucky boy to have you and Ed. There is no doubt that with the two of you he will succeed.

My aunt and uncle (who are just about 5 years older than me) have 5 children. Their oldest daughter has Aspergers. She is about 16 now. It likewise took them a long time to figure it out. In fact, I think Kim (my aunt) was the one who finally read a book about Aspergers and then talked to the doctor to finalize a diagnosis.

I know there are probably many parents you can talk to, but if you need a positive, well-informed mom to talk to, Kim would be an excellent start. They have such a great mix of humor, love, and hard work in their home. From what I've observed, their daughter is very happy and self-confident.

Here's a link to her blog:
She has tagged many of her posts "Aspie corner." Let me know if you want any more contact info.

Patience said...

Here's to a community of friends and family that help all of us be the best people that we can be.

We love you.

Char @ Crap I've Made said...

This is going to be big old long rambling comment. Don't say I didn't warn you. ;)

There's one thing I've learned from our Asperger's journey: none of it is an accident. There's a purpose and a plan to all of it.

I'm CERTAIN that I agreed to this gig before this life. On some level I think I've always known I'd have a kid with special needs. Does that make it easier? Nope. Not at all. But, it reminds me that I *can* do this on days where I feel like I can't.

I "get" him. I knew what to do to soothe the epic freak outs. I still do. Truth be told, the more evaluations I sat through, the more I was sure I had Aspgerger's, too. Kidding....mostly.

From the overpriced basement preschool teacher (who I hated, but I NEEDED a car pool) that had an Asperger's kid herself and gave us the dr's name that finally got us a diagnosis to the fact that Campbell came 3rd and has to be social/do hard all makes sense when I look at the big picture.

I, too, love the "sounds about right" response. These kids are SMART. I've gotten a lot of crap about Campbell knowing about his diagnosis. The kid was in the room. He's brilliant. He didn't miss that fact. The first words out of his mouth after we walked out were "Do I have Asperger's in real life?"

He refused to participate in his preschool graduation last week. The little neighbor girl told her mom "Campbell knew his parts, he just doesn't like people looking at him." I asked him about it and he said "I told her about my Asperger's. She wants to marry me anyway."

The wondering/worrying kills me. I can't let myself do it. It makes me pray for the second coming. ;)

Bryce is going to be OK. Campbell's going to be OK. They have moms just crazy enough to make sure that happens. Love you.

Terry Mastny said...

I have been a part of Bryce's life from the beginning...and his place in my heart has only grown over the years. I'm glad you have come to terms with his Asberger's diagnosis. He needs you and all his other cheerleaders to help him navigate the way to be the best Bryce he can be. I have no doubt that he will be awesome!

Lei said...

Came here looking for a review of Unbroken (do you have one, lol?) and caught this. I'll echo everyone in saying how lucky Bryce is to have you for parents. He has come this far without an "official label" so he will continue to adapt, I'm sure. (((hugs)))

Annie said...

Hey Shelah, Doug's mom has had a new foster child the past 9 months or so who she is in the adoption process with. He is 11 years old as well. I told her about you and she would love to ask you a few questions. Just a heads up, I will give her your email address.

ps. I think you are an awesome mom and are so lucky to have Bryce in your life! That was such a sweet post to read. Thanks for sharing.

pss. FYI, a new gym opened up right by HEB and they have the most wonderful spin bikes ever! Thanks for getting me hooked! :)

kd said...

I found your blog by searching on Camp Takoda. My son sounds very similar to Bryce and I am thinking about enrolling him in the camp. Can you give a quick review of how you and Bryce felt about it, whether it was beneficial? Sorry to post a comment but I'm not sure how else to contact you. Thanks in advance for your thoughts!