The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (29 page)

I brought Grant to his game the next Saturday and did what Christina had recommended—reminding him of his goal in the prior game and how everyone was so proud of him for it. Even though Grant had quickly lost his enthusiasm about the goal he’d scored, I had high hopes that he’d engage again on the field. Maybe he’d connected with the sport in a new way that would keep him just a little more focused.

Except that didn’t happen. For some reason, he just walked into the middle of the field, sat down, and started playing with the laces on his soccer shoes. He untied his shoes on the field in front of the team, and he didn’t seem to care that the other kids would notice he didn’t know how to retie them. He just focused on what made him comfortable, and at that moment what made him comfortable was playing with his shoelaces.

I sent Gehrig to go tell the coach to pull Grant, but before Gehrig even got there, they pulled him. Everyone was shouting,
“Grant! Grant! Grant!”

I walked over toward the coaches. “We just took him out because we’re afraid he’s going to get hurt,” one of them said.

“I know,” I said. “I was going to tell you to take him out. I mean, if he’s that despondent, there’s no reason to have him in the game.”

Here was a boy who’d scored a goal days before, and now he was sitting in the middle of field as if he had no idea that a game was going on. I had a lump in my throat. It may have been because we were coming up on Halloween, and he couldn’t take his focus off of that. Who knew? With Grant, it could be anything.

I was baffled by it all. I still couldn’t get over how quickly I went from that feeling of having my breath taken away and feeling so proud, to feeling confused and emotionally spent.

The icing on the cake: It was our turn to bring the popsicles for the team, and while everyone else played the game, Grant opened up the popsicles and played with them on the sidelines. When I got home, I felt completely wrung out. I had to sit down and regroup. I kept replaying the scenes of both games over and over in my mind. It hadn’t sunken in with me yet—and it may never—that you can’t apply logic to a lot of Grant’s behavior. Even though I’d been learning about how randomly kids with Asperger’s can behave from one minute to the next, for any number of reasons I still found myself trying to figure out what had gone wrong on that soccer field.

As I tried to digest how the scene had played out, I also found myself reviewing my behavior on the sidelines. Unusual as Grant’s behavior was from one game to the next, what was truly difficult for me was not talking about his Asperger’s to other parents. This was something I’d done a lot since his diagnosis, but I wish I hadn’t. I’d found that I needed to explain why he didn’t play like the other kids, though I knew full well that I was doing it for me, not for him. I knew that it only served to quell my own insecurities.

There was a difficult truth that I wasn’t admitting to myself: I often felt embarrassed by Grant. That led to feeling ashamed and guilty about feeling embarrassed. So much of youth sports is about the community that you form with the other parents and kids on the team. As much as I’d improved in dealing with Grant in situations that involved other people, I was best with him in situations that involved total strangers. When it came to people who knew me or Curt, like parents at games, I was still struggling with what those people thought of me and my son. Through little fault of their own, other parents seemed to bring out the worst in my selfconsciousness.

Still, there were some parents who would go for the jugular when it came to Grant’s behavior on the field. Of course, it never helped anything to hear people who didn’t even know Grant wonder why Curt Schilling’s kid wasn’t a better athlete.

“Why doesn’t he know how to hold his glove?”

“Why isn’t he a better batter?”

“Why doesn’t he understand the rules?”

They weren’t spending time with Grant. They knew nothing about him. So I’d tell them—partially to shut them up but more accurately to apologize for him. And that was something I needed to stop doing.

Of course, no one ever says or has said anything like that to Curt, at least not to his face. For his part, Curt cares very little about the level at which our kids perform on the athletic field. His only concerns are effort and ethics. He wants our children to play the games they play with honesty and integrity, but above all to have fun, no matter what they’re doing. With Grant and sports, those are challenges, because some of his behavior can make it seem as if he is a “bad sport” or not hustling, which couldn’t be further from the truth. Grant does what Grant
needs
to do at any given moment, and as someone who played professional sports for a living, witnessing that in Grant was Curt’s biggest challenge.

After I’d replayed the whole apologizingforGrant scene in my head sev
eral times, I was all too aware that while Grant’s behavior was appropriate to his Asperger’s, mine was not. It was a hard realization to come to, but it was truly a wakeup call.

Since then, I’ve been better about not apologizing for Grant and letting him just be himself. It hasn’t been easy, though, and I sometimes feel like I’m living in the last scene of the movie
Little Miss Sunshine
. In it, a little girl who is not classically pretty and not at all prepared enters a beauty pageant. Her grandfather helps her with the talent portion of the competition by teaching her to do a striptease. As she performs, the rest of her family is shocked, and everyone in the pageant’s audience is appalled. In an attempt to make it seem as if there’s nothing wrong or unusual with their young daughter’s raunchy act, the parents jump up on stage with their daughter and dance. That’s where I am now. I often feel like going out onto the field and doing a songand-dance number to divert attention from Grant’s antics.

Really, I never know what he’s going to do next. Just recently, he was playing basketball and his team was throwing the ball in. He was behind his defender—and making rabbit ears. To whom, I have no idea. For two seconds, I cringed. Then I just started to laugh, and so did my mom.

I suppose my ability to laugh is a sign that I’m coming along. Even though he was operating on his own wavelength on the basketball court, as we left that day I realized that I was really proud of Grant for just going out there. And that’s progress.

For all his struggles with sports, I have to give Grant credit for trying them. In his own way, he’s given everything his best shot, even when he needed to be pushed headfirst into these things. They’ve certainly filled a different role in his life than I’d originally expected, but that doesn’t mean they haven’t been useful to his development, because they have.

Ultimately, his general ambivalence about sports makes it hard to predict how he’d feel about quitting, if that’s what we decide he should do. There are some moments when he seems really interested in playing, but there are many
more moments when he doesn’t. If you ask him whether he wants to be signed up for soccer, he’ll say yes, but then when you try to get him to leave the house for a soccer practice, after he screams
“Why did you sign me up for soccer?”
—well, good luck. Of course, that has a lot to do with his resistance to transitions, but once he’s at the practice, he spends a good amount of time just spacing out.

What makes this a truly agonizing decision is that in the end it really is about safety. We’d be happy to let him continue to hang out at midfield and untie his shoelaces if we weren’t concerned that his aloofness was a danger to him. Safety is a hard thing to compromise on, and no matter what Curt and I decide, that will undoubtedly be a big factor. We’ve come to find out that many children with Asperger’s play individual sports like golf, swimming, and martial arts, and they excel because of their ability to focus so intently and obsessively on one thing. Maybe we’ll focus more on his swimming, which he loves. Maybe that could be his thing. Maybe he’d be more consistently excited about that. We’ll figure it out, I’m sure.

O
NE OF THE REASONS
I wanted Grant to play sports was that he didn’t have many close connections, even at home. I had this idea that if he were a good athlete, he would find more common ground with all of us in the family and with other kids his age. I thought it would be one way for him to learn how to interact and get along with other kids, starting with his siblings. I figured sports was sort of a universal language—certainly the language of our family.

And I worry that with sports out of his life, it will distance him from his siblings even more. I wonder how he’ll feel when he’s the only one of our kids not playing. He definitely notices when there’s excitement in the house about something one of the kids has done at a game—like when Gabby hit that grand slam. Will he feel left out of having chances to achieve things like that?

So far, though, playing sports hasn’t given him too much to connect with his siblings on, and no amount of basketball, baseball, or soccer seems to help his ability to interact with them. He still barely notices when he’s annoying them, and they have to put up with a lot. It’s bad enough that I have to give in to Grant so often and let him choose the radio station we listen to, the DVD we watch, what we have for dinner. On top of that, Gehrig, Gabby, and Garrison have to deal with Grant’s constant talking, and a lack of privacy when they have friends over.

Most kids don’t want their little brothers around, no matter what they’re like. Little brothers act like it’s their job to bug older siblings and their friends. But it’s not as if Gehrig and Gabby can just tell Grant to go away, because he won’t. He doesn’t realize he’s doing anything wrong.

When the older kids have parties in our garage, we have to get Grant out of the house, because he walks into the garage and starts hanging out as if he’s one of the gang. He’ll just join the older kids and start talking. And talking. And talking. He repeats himself again and again. He listens to the older kids and picks up humor that’s probably not even appropriate for them, and then repeats that humor ad nauseam. Sometimes he’ll start fighting with Gehrig right in front of Gehrig’s friends, and then hitting the friends to try to get them to play with him. Gehrig’s friends are as patient as possible, but they also want their privacy when they’re hanging out together. They’re fourteenyearold boys. They don’t want to have to deal with a tenyearold, especially one who has no sense of other people’s boundaries.

Gabby goes out to other friends’ houses a lot, but when she’s at home with friends over, Grant decides it’s a good idea to go and tell them stories that have no relevance to anything they might care about. He’s oblivious to hints they make in an effort to get him to leave the room. He doesn’t understand that his siblings might want to have some space for spending time with their friends—alone.

It’s hardest on Garrison. He’s Grant’s constant playmate, and a very passive kid who idealizes both his big brothers. But like most kids, when Garrison has a friend over, he wants it to be
his
playdate. What I find is that when Garrison has a playdate at home, Grant takes it over, often making them do what he wants to do. The kid who is visiting doesn’t know what to think, and sometimes feels bossed around by Grant.

The solution for me is usually to send Garrison out for playdates, or to schedule the ones at home when Grant isn’t going to be there. On the flip side, when Grant has playdates at home, we need Garrison around in case Grant wanders away from his friend. Garrison is usually more than happy to pick up where Grant left off. But I wonder, how much longer will he be interested in that?

Here’s the hardest lesson of all: How can you teach patience when you have none yourself? Not to mention that Grant is now at an age where social interaction is beginning to have a huge impact on how he feels about himself. We’ve often spoken with the older kids and tried to explain to them that Grant honestly doesn’t intend to be mean, it’s just his way of coping, his way of communicating, and Grant’s way is and always will be different from ours. It’s probably not realistic for us to expect kids of twelve and fourteen to “get it,” since we’re still trying to get it ourselves. They’ve definitely changed the way they interact with Grant, and they keep trying to improve in this area. But it remains a big challenge. Our greatest triumph in this area so far has been getting Gehrig and Gabby to come to us to help resolve a “Grant incident” rather than getting into a shouting match with him.

Grant’s difficulty understanding how to have twoway interactions isn’t limited to his siblings. There have begun to be some problems with kids outside our family. For instance, his friend had a birthday party recently. Grant had become obsessed with Chaotic cards and he got a starter pack for his friend as his birthday gift. But Grant insisted on bringing his own deck to the party, too. I tried to tell him that it wasn’t a good idea.

“Grant, this isn’t your party,” I told him. “It’s your friend’s party. You need to let him have the attention and decide what games everyone is going to play.” But Grant wouldn’t listen to me.

Sure enough, it turned out to have been a bad idea. The birthday boy’s friends made fun of Grant and his cards—apparently most of the tenyearolds have outgrown them. But not Grant.

Even though the other kids were being mean, Grant didn’t want to leave, because it was his friend’s party. Still, he was hurt that the friend didn’t stand up for him. Grant cried the whole way home. The part that confused me was that he wasn’t crying because
he
had been made fun of. In his mind, at least, the problem was that they were making fun of the cards. It was almost as if the cards were Grant’s babies, and someone was calling them ugly.

It was a classic Asperger’s obsession with something, an attachment to his things that went far beyond that of our other kids to their toys. We try and take that into account when it comes to playing with others and sharing. To complicate things, he often switches obsessions unpredictably, at the drop of a hat. It makes for a very interesting Christmas each year. It’s not out of the ordinary for Grant to assemble a Christmas wish list (replete with an appendix, a table of contents, and MapQuest directions to stores where said items can be purchased) and then a week later not want a single thing on the list. By then he will have found another passion, or another interest, leading to a completely new list.