The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (15 page)

Of course, Grant made things more complicated. I tried to take him to see game three. Curt was not pitching, and the Sox were up two games to zero. But it didn’t work. He was restless and noisy, and to make matters worse, Garrison had started following his lead, so my dad took Grant home for me. To Grant, this game wasn’t any different. That it was something really special didn’t compute for him. As far as he was concerned, it might as well have been a Little League game.

After we won game three, my parents and I came up with a plan for game four: They would bring Grant and Garrison in during the seventh inning. Though I’d only just begun to learn about Asperger’s, I knew how important
it is to explain an environment and expectations before the child arrives in a particular situation. That improves your chances of having some control—although there are no guarantees.

After the seventh inning stretch, I took Grant up in the stands and explained to him, with each and every play, what he could expect. My parents and I told him what a big deal the World Series was and how many people were watching the game around the world. As the final innings progressed, I talked him through play by play so that he could try to get a sense of what was coming next. I knew that when the last out was made, it would be very loud, and there was a good chance Grant wouldn’t be able to handle the noise. I let him know that it would become very loud because people would be cheering, and there might also be fireworks.

When the last out was made, I literally held my breath for a second and silently prayed,
Please don’t freak out,
before I looked at Grant. When I finally looked over at him, I was shocked to see him jumping up and down. He started screaming himself, and then he began hugging everyone. He was just excited. He was even more excited than the rest of us.

For a minute I felt as if I were frozen in time. After the last few months, just being able to sit back and watch Grant’s euphoria made me almost as happy as the fact that we’d just won the World Series. Nothing will ever compare to witnessing Grant’s excitement and joy, and the feeling of relief that came over me. In that moment it didn’t matter that Grant couldn’t name anyone on the team, or that he hadn’t been able to sit through games before. Right then he was sharing his pure joy with us, and it warmed my heart as nothing else could. The fact that he was able to share this moment with all of us, that he was able to be just as excited as the millions of other Red Sox fans who were losing their minds, told me that we were going to get through this.

What I will remember the most about that night was seeing all the players’ kids on the field, hugging their dads, taking pictures with all our friends and teammates. It was a real celebration for everyone. Everyone but Grant.
He had discovered himself on FanOVision in center field and was running back and forth, watching himself on the screen. He couldn’t connect to what was happening on the field with all of us. But that was okay. I remember thinking,
He’s happy. He’s different, but he’s okay.

T
HE DOWNSIDE TO ALL
the baseball excitement that year was that it meant Curt was unavailable for serious parenting almost all the way into November, which made it all the more difficult to implement the necessary changes that Grant’s Asperger’s diagnosis required of both of us as parents. The World Series win was followed by a parade, and before I knew it, Thanksgiving, Christmas, and New Year’s were right around the corner. We had to read and learn and get involved in special programs, but we also had to find the time to do it together as parents.

It was an adjustment for the rest of the family as well. Even though we still hadn’t told Grant, there were changes we all had to get used to. The most pronounced change was that the yelling stopped. I understood very clearly that when we were trying to get Grant to do something, no matter how frustrating it got, I couldn’t lose my patience and raise my voice. Neither could Curt. It took awhile, but that fall I worked hard to keep my voice in check. (I have now become so patient, there are times I’m sure people want to check my pulse and make sure I’m alive—especially bystanders who see Grant giving me a hard time.)

A couple of days after the New Year, with no more distractions to keep me from digging in, I started learning more about Asperger’s. My research began online, and as I started looking for resources around us, up popped an email address for a contact in our area. Lo and behold, it was the address of Christine, the mom the administrator had told me to call back in September. Without thinking, I sent Christine an email. To me, an email seemed safer and less complicated than a phone call. On the phone it would be awkward and
difficult if I couldn’t handle what she had to say, or if I felt I had to keep the conversation going. I hate dead air, so I talk constantly when I meet a new person. Just my luck, though—that email address no longer worked. I found a certain relief in that, and took it as a sign that I must not really be ready to talk to someone outside my immediate circle.

But in my mind, I couldn’t let go of it. I had a whole cold, gray January to ruminate on it. I had nothing but time during that month of the year. Curt wouldn’t be leaving for spring training until February. It was one of those rare occasions when we were a twoparent home with no holidays. With the extra breathing room, I couldn’t stop thinking about how I should call that woman Christine.
Make the phone call,
I kept telling myself.
You are ready.
Finally, one afternoon I looked up her phone number and gave her a call.

Talking to her, I immediately felt more at ease. I was no longer alone. We shared stories about our sons. What I remember most was that she said her son had a couple of good friends that he played with. I was so afraid of Grant not having friends. Ever since that first failed playdate back when he was in preschool, I had been avoiding playdates for Grant, and I was excited to learn that it could work. Here was a part of his life that might possibly be normal and typical. Until that moment, every piece of information that I’d heard or read had been about the ways he’d always be different.

We talked for a good hour. Christine told me about her connection with the Asperger’s Association of New England, and filled me in on how many kids in our town alone were on the spectrum of autism. I was quite shocked. Not only was I not alone on this ship, but I had
lots
of company—nearby, no less. The one thing I had been avoiding for months was what I needed most: to connect with other people facing the same thing. I needed to hear someone say that Grant would ultimately be okay, and I needed that to come not from a doctor or a teacher but from a parent who knew from her own experience. I needed to hear someone tell me, “Yes, life will be challenging at times, but he will be okay.”

Back during my first meeting about Grant with Dr. Rosenberger, he told me that Grant would most likely grow up and get married and have kids. He would probably marry someone who shared his interests. For months I’d been struggling to see this actually happening, but after talking to Christine, all that changed.

That phone call was followed shortly thereafter by a call I made to the Asperger’s Association of New England, where a woman named Brenda Dater answered. I asked her several questions, and I could feel myself starting to loosen up. Never once did Brenda mention that she knew who I was or to whom I was married. She never acknowledged she knew until I talked about it first. She knew how I was feeling and talked to me like a friend.

Brenda had
two
children with Asperger’s. I was having such a hard time with one, I couldn’t imagine how she handled two. Yet she was happy and proud. Her optimism was infectious and I knew immediately that I needed to find some of her upbeat spirit. Brenda offered to come over and show me some techniques that helped her family. A week later she arrived and we sat talking for two hours. I have to say that what she did in a day, every day, seemed like an awful lot of work. She talked about how kids with Asperger’s take comfort in having schedules, and how she makes sure she sets and sticks to a clearcut agenda for her kids. I imagined her house filled with schedules and charts.

One of the most valuable lessons I took away from that day with Brenda was what she called her “one to five.” It was a scale of emotional responses, and the idea was to help the child correlate his or her reactions to the appropriate number. For example, not liking what you’re told to do—like having to turn off your computer game and brush your teeth when you’d rather not—warranted a levelone reaction: maybe a little resistance and whining. Nothing short of a fire or other emergency warranted a levelfive reaction, which might include screaming, crying inconsolably, and what I would call a total meltdown. It’s natural for kids with Asperger’s to go straight to level five over the smallest things, and Grant was no exception.

The onetofive scale was a concrete way for me to give Grant a sense of what was appropriate behavior. Did it work the first time? No. But now I only have to say, “Is not being able to get the toy you want right now cause for level-five behavior or levelone?”

Suddenly I felt as if I’d been hired for a new job. We had just finished orientation for my new motherhood position, and I had a lot of retraining to go through. It wasn’t easy to remember all of it, but I was trying. From the moment I started talking to Christine and Brenda, I felt as if I was taking my life back. No one else was going to help Grant. I had to.

A
FTER
B
RENDA
D
ATER CAME
to my house, she told me I should try to attend a support group meeting. It seemed like a good idea. But I wasn’t going to go alone. I’d learned my lesson after attending that meeting at the school, where I totally broke down.

Since Curt was at spring training, and my mother was eager to learn all she could about Grant and his issues, she agreed to go with me. We showed up at the meeting with about four couples. On the table were six or seven really thick books about Asperger’s. Each of the people in attendance was giving a review of a book. I just sat quietly and listened as they all spoke eloquently. I felt like I was sitting in on a graduatelevel course on the subject. My mom and I later laughed in the car. “Can you imagine what dumb asses we probably looked like to them?” I said. “I looked at those books and thought, ‘Let me know when the comic book version comes out.’”

But when my mother and I weren’t laughing at ourselves, we compared notes on the parts that were really informative. In truth the meeting wasn’t at all stuffy. There was a lot of humor as people shared funny stories about the ways Asperger’s had made their kids do strange things. There were poignant moments, too, when people shared their frustrations and struggles. It was a reality check for me to discover that there were others with bigger struggles
than I had. It made me feel grateful that my child liked school, his teachers liked him, and his school administrators were good to me.

The group discussed various aspects of Asperger’s. They talked about how some people think it’s the result of early childhood vaccinations, although people in the group generally believed that to be a myth. I figure, my other kids got the same vaccinations, and they don’t have Asperger’s. Also, the group touched on the diet changes that some in the world of alternative medicine recommend—namely, a glutenfree, caseinefree diet—as a way of managing or even “curing” Asperger’s. The consensus of the group was that even if there are benefits, they are not significant enough to warrant the difficulty of trying to keep your kid away from most normal foods. Not to mention the stigma of a special diet added to the stigma of being different.

One topic came up that caught me way off guard, though. Someone in the group mentioned that Asperger’s kids have a high incidence of teen suicide. At the moment I heard it, I thought about how lucky I was that Grant was only in the third grade, and so I didn’t have to worry now about him being ostracized as a teen and feeling so bad he’d want to kill himself. Other than that thought, I didn’t react in the meeting.

I didn’t think much more about the meeting until the next day. I was on the Asperger’s Association Web site looking up something we’d talked about. Something there led me to a link about Asperger’s kids and teen suicide, and I lost it. Once again I was crying. I was so sad and scared. I called Curt and told him about it.

“Curt, how will I ever protect Grant from the world?” I asked, sobbing.

“Who has the right to ever make anyone feel that low about himself?”

Curt tried to console me, longdistance, but I couldn’t get that awful topic out of my head. It brought up the memory of my maternal grandfather, who had killed himself when I was sixteen. I’m haunted by that day, when my father and I came home from the beach to find a cop car parked in front of
the house. My father was driving, and I remember vividly how we both jumped out of the car and sprinted for the door, where we found my mother inside the house, lying on the floor screaming near where my grandfather, a recovering alcoholic, had shot himself. A policeman was trying to get my mother to drink water. They sent me upstairs, and as I walked slowly up to my room, my mother’s cries pierced my ears, lingering in the air for what seemed like days.

I couldn’t seem to think straight, when the phone rang. It was Brenda. “So what did you think of the meeting?” she asked.

“Well,” I said, “I’m really struggling. That bit about teen suicide really scared me.”

Brenda tried to calm me down. “It doesn’t have to be like that, Shonda,” she told me. “We are making changes in this world. We’re making progress, and hopefully there will be more awareness and acceptance by the time Grant is in his teens.” She assured me I had done a good thing by coming to the meeting. “You’re doing a good job for Grant, preparing him for the world.”

O
VER THE NEXT MONTH
, I talked to several more people about Asperger’s—some who had kids on the spectrum and some who didn’t. Many kept recommending a special camp called YouthCare, which was affiliated with Massachusetts General Hospital. When one person mentioned to me that I should check out YouthCare I thought,
Okay, sure,
and added it to my long list of things to look into. But when a second and a third person also recommended YouthCare, I realized I had to take this recommendation seriously.