The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (14 page)

Asperger’s kids often have an inability to focus consistently, and they become easily distracted. When Grant is playing sports, he will sometimes suddenly become distracted. He’ll be standing out in the field with no idea what is going on. On the other hand, kids like Grant can become sharply focused on things they’re interested in. He can get lost in his Legos and Chaotic cards for hours on end. This singlemindedness often leads Asperger’s kids to excel in fields that interest them—often science and computers (or in Grant’s case, dinosaurs). It’s insane that Curt missed this for so long, given that I could have replaced Grant’s name with Curt’s in the sentences above. It’s one of the reasons I think he was so good in highpressure situations. His ability to lock in and focus at those times was incredible.

The inability to stay focused except on certain subjects has another effect: It makes it hard for kids with Asperger’s to engage in tasks that have multiple steps. For Grant and many other kids, the first place this difficulty shows up is in a failure to learn how to tie their shoes.

Instructions as simple as “Go upstairs, brush your teeth, and put your PJs on” were for Grant a complicated threestep process. The process had to be broken down: Go upstairs. Brush your teeth. Put your PJs on. Once he got it, he had to repeat it exactly the same way so he wouldn’t be anxious about getting it wrong. Go upstairs. Brush his teeth. Put his PJs on. Rinse and repeat, every single night.

Because Asperger’s kids have difficulty processing more than one thing at a time, they also don’t handle transitions well. They don’t know what information and tasks they’ll need to process when they’re called upon to go different places, or shift to different scenarios, so they prefer to stay put. Just try getting Grant to go anywhere, whether it’s soccer practice or the ice cream shop after he’s told you he wants ice cream. He hates moving from point A to
point B. It was an especially big problem when Curt was still playing and we often traveled to see him, whether at spring training or at an away game. Every car or plane trip with Grant was first met with a protest on his part. Now I know why. I read that experts suggest letting kids with Asperger’s know way in advance about any transitions they will need to make, so they can adjust more easily.

One characteristic that makes many outsiders think Asperger’s is just an excuse for stubborn behavior, or for parents who are simply indulgent, is that the kids can often only deal with things on their own terms. This is also the characteristic that unfortunately can get people with Asperger’s fired from jobs later in life if they don’t learn to control it. The perfect example of this occurred when Grant went through his neurological testing. He negotiated every detail of the tests with the woman administering them. He would only read what she asked if he could sit with his feet in the air. I now know he wasn’t just giving her a hard time. He was trying to feel safe; he needed to know that he was in control of all the sensory input coming at him, so that nothing would take his senses by surprise.

It was both comforting and upsetting to read these Web sites. On the one hand they offered a clear explanation of why my son acted the way he did. On the other hand it hurt to realize how clueless I’d been about my own child and how I hadn’t been doing right by him. I could only read so much, a little at a time.

D
ESPITE THE INITIAL CONFUSION
, guilt, and regret that I felt, it was amazing how one piece of information could change so much. Getting Grant’s diagnosis transformed everything—our understanding of him, our reactions to him, and our approach to his care and education. There was a shift in perspective under way from the minute I heard the words
spectrum of autism
and then
Asperger’s syndrome
.

The first thing I did was to ignore the neurologist’s suggestion not to label Grant in his school file. I understood his rationale, but I knew it didn’t make sense for me. In fact, I took the opposite approach: I didn’t know how to begin to handle Grant’s Asperger’s, so I went right to the school, told them all about it, and asked them for help. I felt I had to let them know. How else were they going to be able to help him? Besides, that school administrator I’d talked to in the parking lot before Grant’s official diagnosis could clearly see what was going on with him.

My instinct was right. It turned out that the school had services available for kids with Asperger’s and autism. It’s a public school—all my kids go to public school—and I was pleased to learn that those kinds of services were available there. I’ve always felt it was important for my kids to be in public schools, to be part of the community.

Grant could go on either an Independent Education Plan (IEP) or a 504 plan. Both programs would take him out of the classroom occasionally for special services and provide accommodations—like an aide to help him focus—inside the classroom. But an IEP is more geared toward learning issues. Gran’t issues are more behavioral and don’t affect his ability to learn, so he was assigned a 504. That could change as he gets older. We’ll see.

The administrator was incredibly helpful, and I knew almost immediately that ignoring the doctor in this case had been the right move. She called a team meeting with Grant’s teachers, the principal, and the specialist who worked fulltime at the school, to put together a plan that would help Grant get what he needed. I figured the meeting would give me a good chance to learn techniques to help Grant from the professionals themselves as they outlined the regimen that would be best for him. I had the idea before I went that I was composed and put together enough to talk with strangers about Grant’s diagnosis, but then I got to the meeting and started falling apart.

In between sniffles, I sat quietly and listened to each of them speak.
Everything they said felt like it was coming at me too quickly. They each had so much to say, and they just rattled it all off. So many different thoughts run through your head at a moment like that.
He’s going to be one of those kids people make fun of. His life will be so much more challenging than other kids’. I won’t be able to protect him from the other kids.

I was still worried about even telling Grant that he had Asperger’s. We hadn’t done that yet, and now there were going to be changes in his schedule at school. But we were only two weeks into the school year, so his routine wasn’t firmly set. And the people at the meeting assured me that many kids left the classroom during the day to go to “specials.” It’s quite different now than it was when I was in school. Back then, everyone knew when a kid was leaving to go get help with speech or reading, and it was a little embarrassing. These days, though, they also refer to “specials” outside the regular classroom as “clubs.” They promised me he’d just see it as part of his schedule, but I was still a wreck.

Of course, because of baseball Curt wasn’t there with me, and I had to shoulder this all by myself. It didn’t take long for everyone at the table to see that this information was more than I could handle. Human nature kicked in, and this band of educators shifted gears into their roles as women and mothers. They reached out to me as moms and tried to make me feel better.

“He will be fine,” several of them said, almost in unison. “We’ll help him.” Ironically, I have friends whose children have learning issues or are on the autistic spectrum and so have IEPs. Each of my friends offered to go with me. They’ve been in this game for years, and probably would have provided tremendous support for me at the meeting. But I told them no, I could handle it, thank you, that I was just going for an evaluation. I think deep down I was scared and thought that if they were there, they would push me too much. I needed to experience this at my own pace. In my mind, I hadn’t fully accepted what was happening. And I didn’t know how to learn. I’d never been the kind of person who goes out and reads everything there is to know about some
thing like this. I wanted something that was simple and straightforward enough that I could deal with it in my current emotional state.

After the meeting, a woman named Kathy handed me the number of another Medfield mom. “Call Christine,” she said. “She knows what you’re going through. She has a child a year ahead of yours.”

I couldn’t even properly thank her because I was so afraid I would start crying again. What is it about kindness when you are on the verge of tears that can make you fall apart so easily? As much as I appreciated the gesture, I wasn’t ready to reach out and talk to another mother. I was too anxious about the diagnosis to learn too much about it all at once. I could only take information in piecemeal, in stages, and I wasn’t ready for the next stage yet.

This was going to take a major adjustment on my part. Life was not going according to plan. I wasn’t ready, and honestly I didn’t realize how big an adjustment I had to make. The neurologist’s advice that I get myself some help kept echoing in my head. There was no way I was going to take his advice. It still felt like an insult. Besides, I was the one who always held things together for everyone else’s benefit. If I were to face my grief I would fall apart, and then who would help everyone else keep it together? Seeking help of any kind for myself was out of the question. I kept thinking,
I’m going to continue to appear to be the person people expect me to be. I’m going to be the wife who is smiling in the stands and cheering my husband on, and I’m going to do it without anybody knowing what’s going on at home, and in my heart.

eight

Opening Up

A
LL THIS DRAMA WITH OUR FAMILY WAS OCCURRING AT THE
same time as a very different kind of drama—namely, that of the intense and exciting baseball season—and postseason—of 2007, when Curt played a big role in taking the Red Sox to another World Series victory.

The whole summer before Grant’s diagnosis, as each week of summer camp and Pop Warner football seemed to reveal something else worrisome about his behavior, baseball had been my salvation. It provided me with a muchneeded source of fun and distraction—at least as long as Curt and the team were doing well. And that season, they definitely were. One thing you have to get used to when you come to the Red Sox is that there is a pretty good chance your season won’t be limited to the typical 162 games. Ownership did its best to put a winning team on the field, and the Red Sox fans expected nothing less from their players (a noticeable change since 2004). It was just the kind of environment my husband thrives on.

And despite all the craziness with our family, it was the kind of environment I thrived on as well. What wouldn’t be fun about my summer? Most days
I had the option of either watching my kids play sports or, when they didn’t have a game, watching the Red Sox. Sometimes, if the kids didn’t have games or activities, we could even fit in a road trip or two. A couple of nights at a hotel watching movies and ordering from room service—oh, and a baseball game thrown in (for everyone but Grant, of course)—sounded pretty good to the kids and me. It was a great chance for us to regroup as a family. I loved disappearing from our life like that. No one could find me, and it almost felt like everyone knew not to call.

Of course, it was not all fun and games on the road when Curt was pitching. On days when he pitched a night game, that meant he slept till noon, got up and ate his same meal of Ellio’s pizza, and then took a nap. In a small hotel room, that usually meant I had to take the kids out for a walk so he could rest, although we had to make sure we were back in time for each of the kids to wish Curt good luck, and for me to give him one of my corny poems. That had been our longstanding ritual for many years, whether we were home or away.

That particular summer, when I was so overwhelmed with all this news about my kids, going to the ballpark was my one indulgence. Being in public provided an opportunity for me to be “on.” I became a different person, a person for whom everything was always just fine. When Curt had pitched for other teams, a few of the fans had known who the wives were and occasionally said hello. But Red Sox Nation was different. From the minute we were traded, they knew a lot about me. And they all felt as if they really
knew
me. I couldn’t maneuver my way through the stadium without making lots of small talk with fans. And that summer the fans thankfully kept me busy. I’ve always loved my conversations with the fans, but that summer, for the first time, I felt like I really needed them. Who would have wanted to hear my problems when the Red Sox were in first place? In Red Sox world, that’s like being sad on Christmas.

So that’s what I did that summer when everything was falling apart. I went to the ballpark and smiled my way through the pain I was feeling before and after Grant’s diagnosis in August. I didn’t have to think about what was
going on off the field or what would happen when the lights on the field went dark. If I could go to the ballpark and pretend everything was okay, then I wouldn’t have to feel or think about what was really going on. I wouldn’t have to feel so guilty about not noticing Grant’s differences sooner or not getting him diagnosed earlier.

Not even some of my closest friends knew the full extent of what I was going through, and in public I did everything I could to keep it all to myself. My parents taught me at an early age that you never knew what was going on in someone else’s home and so you should never assume anything. Growing up in a row house, if your neighbors were arguing, chances were you heard it. No one ever mentioned those arguments in public, though. People kept those things to themselves. That summer I learned what my parents meant—you never know what’s really going on in someone else’s home, and in their inner life.

W
E DECIDED TO TAKE
the kids out of school for that World Series. We knew that Curt’s career was coming to an end, and even if he came back for 2008, there was no guarantee that we would make it back to the World Series again. We wanted the kids to be a part of this experience and see as much as they could.