The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (9 page)

five

The Trouble with “Circle Time”

T
HE KIDS TOOK WELL TO
B
OSTON, ESPECIALLY AFTER THE
2004 World Series and the enthusiastic reception we all got from the Red Sox Nation. It took awhile for the excitement to settle down, but when it did, my attention was drawn to things I’d been missing—namely, Grant’s increasingly problematic behavior.

Now that he was getting older, we expected that he would be easier to get through to, and that he would listen when he was told to behave in certain ways. But that wasn’t happening. In the fall of 2005, his kindergarten teacher told us that she couldn’t get him to join in with the other kids in the regular morning gathering on the rug.

“He refuses to come sit with the class for ‘circle time,’” she said to me. This made no sense to Curt and me. We had tried to instill in all our kids that you listen to adults who are in charge. We couldn’t understand why Grant was disrespecting his teacher. I went back to his preschool to ask whether he’d given them a hard time about that, and his teacher there told me the same thing.

“Yeah,” she said, “he never wanted to come to circle time. He fought us on that.”

We sat Grant down to talk about it, but it wasn’t easy. He was looking all over the place. When you talk to Grant, if the subject matter isn’t one he’s interested in, he refuses to make eye contact beyond a blink. He’s always been that way.

“Grant,” I said, trying to hold his gaze, “until you are willing to sit in circle time every day, we’re taking away your Littlest Pet Shop toys.” At the time, he collected these little magnetic toys. He had buckets full of them. He was always collecting tiny little things. Without hesitation, Grant burst into tears. He cried and cried—to the point that you’d think he’d just lost his best friend. It seemed as if he was overreacting, which he did, often. But he was so affected by the loss of those toys that he finally went to circle time.

And yet at the same time that he struggled with listening to adults at school, he displayed a level of caring and understanding that was far beyond his years. That year in kindergarten, Grant started removing my purse from my shoulder and carrying it for me. He would also open doors for me. I couldn’t understand how this child—who would constantly rebuff me in public—had learned to be so chivalrous. It didn’t make sense. Curt and I had always tried to teach our children good manners, but this was a bit extreme. Finally, I learned that it was because of William.

In kindergarten, Grant palled around with a child named William who had spinal muscular atrophy (SMA) and had been in a wheelchair since the age of one. According to his teacher, Grant insisted upon carrying William’s bag and opening doors at school for William and his wheelchair. That practice had carried over to me.

One day I overheard Grant talking to his aunt Allison while we were dropping him off at school. He pointed at William and told her, “Aunt Allison, that’s my best friend, William. God made him not to walk.’” After Grant got out of the car, Allison was choked up just talking about Grant’s statement.

These moments, as wonderful as they are in retrospect, were the moments that confused me the most as a parent who was trying to understand her child. Before I knew about Asperger’s, before I knew exactly what it was that made Grant different, the thing I kept coming back to was that he seemed like one big youthful, energetic contradiction. He would do something that would make you angry, and in the same breath he would tell you he loved you. This tendency made me refer to Grant as a child who would pinch you while he was hugging you.

School was a perfect example of this. He would struggle listening to adults, and he would fight us every step of the way as we tried to convince him to be more respectful, but then he’d turn around and display a thoughtfulness and a caring that no one else his age was able to. Yet for some reason, one never seemed to carry over to the other. He just never knew when to say when, and that obliviousness shifted the behavior from good to bad.

For years before Grant was diagnosed, this neverending sea of contradictions was a constant source of confusion. The contradictions are what make you think this is just a phase, that somehow the “bad” part or the “odd” part of the contradiction will one day just stop, leaving only the “good” part behind. Isn’t it funny how willing we are to assume that bad behavior is somehow different, but good behavior is normal? When I think back to what things were like before I knew about Asperger’s, my mind goes to those parking lots and airports where I almost lost it. The tears and the screaming, the nights when I couldn’t sleep because of what he’d done in school that day, or what I worried he might do the next. I also think about how often Grant would do something good, something that other kids just didn’t do. The times when he would say a word or a phrase that would show a level of understanding and complexity that exceeded what I myself thought.

In those moments, I was always caught speechless, trying to understand how the same child who just uttered those words could have had a meltdown in the grocery store over pork chops two nights before. It didn’t make sense.
The only answer I could come up with was that this was just who my child was, and I had better get used to it.

H
AVING GIVEN UP ON
trying to change his behavior, I resorted to giving in. Out of sheer frustration, I often compensated for Grant’s issues in ways that favored him over the other kids. If we were somewhere and Grant started to scream about something, like choosing the movie to be played in the car, I didn’t care whose turn it was to pick the movie—it was now Grant’s turn. Eventually it was always Grant’s turn. Whatever it took to keep him calm and quiet, I went with.

I had spent too many days negotiating with a four-year-old to get him to eat, get dressed, get in the car—you name it. Naturally, the other kids began to resent all the times Grant got his way. They ran out of patience with him, and how could I blame them?
I
was out of patience, too.

Grant and Gehrig butted heads the most. When Grant was in the first grade, he told his teachers that his brother didn’t love him. You can imagine our embarrassment when we heard that. It sounded so terrible. We scolded Gehrig that night.

“Your brother thinks you don’t love him,” we said. “How does that make you feel?” In Gehrig’s defense, he didn’t know—none of us knew then—that Grant didn’t have a way to filter sarcasm the way everyone else can. Normal kids joke around or they say things casually that sound like fighting words but aren’t. Grant could only take things literally, but no one had any idea that that was the case.

That phone call from Grant’s teacher got Curt and me to pay more attention to how the other kids were treating Grant. We noticed that the two older kids fought for Garrison’s attention rather than Grant’s because Garrison was cool and easy to be around.

The more I paid attention, the more I noticed that everyone yelled at Grant. A lot. Everyone was frustrated with him and didn’t know what to do
other than yell. Curt would come home from being on the road, and he’d yell at Grant. More than anyone’s yelling, Curt’s was like nails on a chalkboard to me. I couldn’t stand it.

In addition to the issues with his siblings, Grant had other, more practical issues, like not being able to tie his shoes. That year we taught him how three times. Oddly, each time we tried, by the next day, he could not remember. He would immediately feel frustrated if I asked him to try again, or even tried to suggest that he might want to practice. Because it would bring up so much frustration, we would wait months at a time before asking him to try once more. Fortunately for Grant, Velcro shoes were in.

While we resorted to getting those shoes for him, we were still puzzled and concerned about his inability to tie his shoes. It bugged me, especially since I had worked at Foot Locker all through college. I’d seen kids his age tying their own shoes. It was a big accomplishment they liked to show off. Why couldn’t Grant do that?

I worried that the other kids would notice he wasn’t wearing laceup shoes. He never seemed to worry about it himself, even though I did. He did have some laceups, which he wore for sports. I’d have to tie them for him, and I’d doubleknot them so that in the middle of a game, he wouldn’t be faced with having to have his mom come tie his shoes.

After a while, I learned to go more with my gut in terms of knowing which situations I shouldn’t push with Grant. He was not always predictable, and I learned to recognize the feeling that maybe a situation just wasn’t right for him.

That year we visited our old neighbors the Bauers in Arizona, who had kids around the same age as ours. Susan, their mother, asked if Grant could spend the night with them. They had recently gotten a new pool and their kids were old enough that they didn’t need a pool fence.

I tried to be polite about it. “I wish I could let him,” I told her, “but without a pool fence, I’m just not certain Grant wouldn’t get in. I don’t feel comfortable about it.”

“Oh, Shonda, don’t worry about it,” she assured me. “There’s no way. Do you really think he’d go in if we told him not to?”

We were standing in the house, looking out at the pool. The kids were done with swimming, and on to snacks. No sooner did my friend finish assuring me there would be no problem than Grant ran over and jumped into the pool. One of the earliest lessons that we taught him around the pool was that he should never go in if there were no adults around. But no matter how many times we tried to instill this in Grant, he didn’t learn. His jumping in by himself that afternoon confirmed my fear.

“Grant, get out of the pool!”
I yelled. Over and over I told him,
“You should know better!”
But he couldn’t seem to understand what the problem was. He knew how to swim, and he figured that was all that mattered. He couldn’t process that he could hit his head and no one would see. He couldn’t process that there were rules and he was simply ignoring them.

I collected incidents like that. They were moments that left me uneasy about leaving Grant with other grownups. There were very few people I would let him go with. I said no to some people I actually think are great parents. But no matter how good they were, I never wanted them to have to be two thoughts ahead of Grant—and I couldn’t trust that they would be.

A funny story about those neighbors: One day Susan and I were at the fence talking. Grant walked right past us and went into her house. He came back eating a PopTart.

“What did you just do?” I asked. I was mortified that he was helping himself to their food.

“I just got a PopTart,” he said, not getting what was wrong with that.

“Why did you get it from their house?” I asked.

“Because they have better PopTarts,” he answered.

As strange as that logic was, it was the kind of logic he operated on, and no matter what we did, getting him to listen was an uphill battle.

Of all those battles, bedtime was the worst. There was no keeping Grant
down and in bed all night. With my other kids, I’d put them to sleep, and occasionally they’d wake up asking for water, needing to go to the bathroom, or frightened from a nightmare. Grant, on the other hand, would get out of bed fifteen times at bedtime, almost without fail. It seemed as if he had to jump on that last nerve of mine just before bed. He would try to negotiate with me every night about going to bed. He wanted to stay up and play with his Legos, read some more, watch TV—anything but go to sleep. Curt played a madeup game called “Thumb Wars” with Grant each night at bedtime, which was basically just thumb wrestling. If Curt didn’t, or they forgot, it was not odd at all for Grant to stroll into our bedroom at 3
A.M.
and wake us up. Curt would yell,
“Grant, what the hell are you doing?”
In a very calm voice, Grant would reply, “You forgot Thumb Wars, Dad.”

I discussed this with a friend whose kids were difficult around bedtime, too.

“I put locks on their doors that can only be opened from the outside,” she said. “At first they might be very upset about it, but then they get used to it.”

I have to admit, it felt a little extreme. But I was desperate. The boy simply would not stay in his bed. So I put a hook and latch on the outside of Grant’s door.

The first week, he cried, screamed, and banged on the door every night. I found it impossible to ignore, and the guilt was just overwhelming. Sometimes I would find myself sitting outside his door until I knew he was asleep, so I could unlatch it. Having a lock there unnerved me—what if something were seriously wrong with him and he couldn’t get out? What if there were a fire and Grant couldn’t get out and I didn’t have time to get to him?

While eventually Grant got sort of used to it, now
I
couldn’t sleep. As long as that latch was down, I couldn’t go to bed. After a couple of weeks, I decided I needed to find another way. What that would be, I had no idea.

While the sleeping situation was awful, the most heartbreaking thing I noticed about Grant was that if he got hurt, there was no way I could console
him. He wouldn’t let me—or anyone—so much as touch him. I couldn’t pick him up and hug him, which is what you instinctively do as a parent when your child is hurt. It was that way from the time Grant was really small—maybe two years old—and continues to this day.

I remember one time shortly after we moved to Boston, Grant was playing outside with Gehrig. I had been trying to help those two bond, and it hadn’t been easy. Grant badly wanted to have a relationship with his older brother, but they didn’t seem to mix well (and still struggle at it today). That afternoon, when Grant was four or five and Gehrig was nine or ten, they got into a fight in the yard. They had been wrestling and they swung at each other. Grant came running inside, screaming and crying.

“Come here,” I said. “Let me hold you.” And I reached for him. But as soon as I did, he screamed louder.

“No!”
he yelled.
“No! No!”