The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (28 page)

Instead, I was greeted by a crying, inconsolable boy. Grant cried and cried for hours. He couldn’t see that he’d done a great job and played his best—better than he ever had before. He could only see that he’d failed to hit a grand slam. He’d set a goal for himself and didn’t achieve it; that was his singular focus. There was no budging him out of his narrow line of thinking. His heart was broken.

“Honey, I can’t handle another dog right now anyway,” I said. “But maybe we can get something else.”

I really didn’t want another rodent. Fish don’t last very long in our house. But we had recently been to the pet store to pick up dog food, and Grant was completely taken with the birds.

“Can I have a bird?” he asked excitedly.
Sure, why not,
I thought.
How much trouble can a bird be?

The last day of school, we went and got a bird. He had one in particular in mind. He picked it out, and we took it home. We named it Griffin—of course, a name beginning with
G
. Grant was so excited.

The next morning I woke up, and the bird was riding one of the dogs. After that it was pretty clear that Grant couldn’t handle the bird himself. We moved it into Curt’s office, and now it’s everyone else’s responsibility—which is to say, mostly mine. If you ask me, a bird is sort of a silly pet. You can’t cuddle with it. But even though Grant and Griffin can’t snuggle, Grant loves that bird and talks about it all the time. He takes a certain pride in it, which almost makes changing the newspaper in its cage worth it. It does make me feel good for him, though. Good enough to deal with the bird for twenty years, I’m not so sure, but that’s how long they live. (I asked.)

I have no idea how long we’ll be able to go before Grant resumes hounding us for a dog. Curt has been talking about not making him wait until he’s
thirteen because he already shows a lot of mature concern for the dogs, always reminding us to feed them and give them water. That makes me nervous. But still, as chaotic as the pets—specifically the dogs—can be, there’s no denying the impact they can have on Grant when it comes to reining in his Asperger’s. When Grant runs in the door after school each day, he goes immediately to check in with the dogs and the bird. When he’s sad and no human can console him, he snuggles with a dog or two and suddenly he’s pacified. I also saw this very clearly when we went to take our 2009 Christmas photos.

For many years, I had a hard time getting Grant to cooperate when we took family pictures, and it was nearly impossible to get a good one for the annual family Christmas card. Every year we knew that there would be a good chance we wouldn’t get much time out of Grant for picture taking. When he was in the frame, he would be fidgeting and sliding all over the floor while we tried to hold him up and keep him still, let alone get him to smile and look at the camera. Thank goodness for modern technology—we were able to take Grant’s image from other photos and swap them into new ones. Other people we know with Asperger’s kids laugh when we talk about that because they know it all too well. One mother told me, “There have been years when we just left our son out of the picture. It wasn’t worth the fight.”

This year, though, I had pictures taken of the kids individually—each with a dog. Well, Grant was suddenly cooperative. With a dog in the frame, there was no problem. He was calm and rational, standing there in his Christmas sweater with a gigantic happy smile on his face and Rufus, the sharpei/pug, at his side.

fourteen

Good-bye to All that

F
OR ALL THE PROGRESS THAT
C
URT AND
I
HAVE MADE WITH
Grant, I’d be lying if I said there weren’t still setbacks, and recently we’ve had to face a big one as we’ve come to realize that after the fourth grade, we might have to take Grant out of organized sports for good.

There’s something about age eleven that makes parents and kids go a little bit bonkers when it comes to sports. Suddenly everyone starts taking games much more seriously at that age. During his sports seasons in 2009, Grant had a hard time keeping up with what was happening on the field, and we began to think it might not be safe for him. He and the other kids had finally reached sizes where some of Grant’s foibles on the field—like just sitting there, in the middle of a game—could lead to him getting seriously hurt.

This has been a decision that we’ve really struggled with, and our minds are not made up. We haven’t quite finished processing it ourselves. If and when we decide to take him out, we’ll sit Grant down and explain our decision to him. I think we both feel that ultimately Grant needs to be the one making the decision, or at least it needs to seem that way. It’s sad, because sports can
help a kid like Grant learn to work with other people, and it’s a good opportunity for socialization and making friends. Playing sports teaches kids good values. They learn how to be part of a team, and they learn sportsmanship. I know that for me, sports kept me doing well in school because if I didn’t go to class, I couldn’t play. I wanted to play, so I made it my business to do whatever was necessary to earn that right. Playing sports, you learn your limits, and how to reach past them, and how to recover from mistakes and move on.

As I’m sure you can imagine, with one member of the family being a professional athlete, sports are a big part of our life. It’s strange to think of one of us being completely removed from participating in athletics, even though it might make sense. Even before I had a family, or even knew Curt, they were a big part of my life. I was raised watching just about every sport and playing field hockey, basketball, and softball. My mom played softball into her forties, with my dad coaching her. Sports played a part in nearly every conversation we had in our family. I even played my dad in a oneonone basketball game for the chance to get my driver’s license.

As a result of all this, sports were a cornerstone of the way I envisioned myself behaving as a parent. I saw myself as the perfect athletecoachmother. When we started our family, I assumed that sports would not just be Curt’s job; they would be our life. I also assumed that being married to Curt, we’d produce at least a couple of serious athletes. I couldn’t wait to coach them, and I thought that because of my interest in sports, I’d be able to coach all my kids at some level. With the other three, that has turned out to be the case. But with Grant, not so much.

Originally I’d suspected that Grant would be a natural athlete because he was big, and because he liked to run and throw his body into people (remember the failed Pop Warner football experiment). Simply in terms of build, he looked like he could be an athlete. But from an early age, way before Grant was diagnosed with Asperger’s, I could never figure out how to engage him, at least not consistently. In his first year of soccer, he scored goal after goal—
until someone took the ball away from him just once, and then he refused to play offense. Some games he’d be on, but during others, I’d find him standing in the middle of the field, completely lost and disconnected from everything around him, almost as if he had forgotten he was in the game at all.

Meanwhile in basketball, there was too much running and too much going on for Grant to grasp it quickly enough, and football was dominated by instructions that needed far too much focus for someone as prone to spacing out as Grant.

In some respects, Grant’s problem with baseball was just the opposite of his problems with basketball and football. Whereas basketball and football have too much frenetic energy, baseball has too little, which plays into Grant’s tendency to be easily distracted. If Grant played in the outfield, there would be a good chance that he had no idea what was going on at the plate. And, of course, in baseball there’s a completely unrealistic pressure applied to Grant because of his father that further complicates how he’s treated by his teammates and coaches.

In the end, whatever sport he’s playing, Grant spends a good bit of the time literally in his own world. Occasionally his coaches have to call timeouts because Grant has forgotten he’s in a game at all and just zoned out. The coaches are afraid he’ll get hurt, just standing there in the middle of the field. I don’t blame them.

Just getting Grant to a practice or game has always been a challenge. Since Grant’s diagnosis, my approach has changed, and there have been some good results. I’ve started informing him about a practice or a game a full day before, to begin prepping him for the change in routine. For a while it was still hard, really hard, to get him out the door, so I started telling him (again) about his practice or game hours before he needed to get dressed, allowing him time to stress out if need be, but also allowing me chances to get him into his uniform before his mood would change. Even with all this preparation, every game was an eighthour ordeal.

Once we arrived at the field, it often became like many other things—he’d suddenly be fine. We’d remind him that he had to listen to the coaches and that it was not appropriate to take timeouts in my lounge chair on the opposite side of the playing field from his teammates. We’d also let him know what his teammates expected of him.

It helped that now Curt was there at Grant’s games. He seemed to appreciate having his father there, and sometimes focused a little bit better with Curt present. But by the time they got home, Grant’s mind was elsewhere. Grant doesn’t think much about sports when he’s not actually playing a game, as there’s so much other stuff running around in that busy mind. Still, he’s become more amenable to sports overall, and we’ve been able to enjoy watching him grow together.

Perhaps the most confusing thing for us as we tried to parent him through sports with Asperger’s was that just as we thought he’d given up, every now and then he’d show interest in a particular aspect of a game. He would do this just often enough to make us think that he’d turned a corner. But it wouldn’t last very long—often not even through a game, or half a game. It was the classic Asperger’s focusing problem.

During his last soccer season in 2009, Grant talked the coach into letting him play goalie one day. I came very close to finding out the price of a new net, as Grant busied himself twisting his body in it, while his team was on offense. One time he got tangled up in the net and was unable to free himself in time to stop a goal. Never mind that everyone on the sidelines was yelling his name,
“Grant! Wake up, Grant!”
Afterward, he couldn’t understand why his teammates had yelled at him. He thought they were being rude.

I never knew what I would get when I brought Grant to one of his practices or games. I never knew whether I would wind up proud or embarrassed. In one of his last soccer games, I felt a little of both. During that game, Grant’s team was winning by a lot. I saw one of Grant’s coaches call him over. He pointed and then positioned Grant in the direction of the
goal. I knew what this meant: They were setting Grant up to take a shot.

For a second I could feel myself getting excited, thinking how great it was that they were giving him a chance to feel this. Grant went in and never moved from the spot where they told him to go. The ball came to him, and he shot and scored. All the parents on the sidelines cheered louder than I had heard them all season.

Grant immediately started jumping up and down. It was one of those special moments that just takes my breath away. For this incredible moment he was sharing in success at the same time as everyone around him. His happiness was in sync with everyone else’s. It meant more than any goal, home run, touchdown, or basketball shot any of my kids had made before. It warmed my heart to the point that I wanted to cry, I was so proud and so happy for Grant. Everyone was happy for him. The whole team was shouting,
“Yay, Grant! Yay, Grant!”

I was expecting the feelgood moment to continue when Grant came off the field. I ran over to him to give him a big hug, but he was unfazed and seemed to watch my enthusiasm with a sense of bemusement and distance.

“Grant,” I said, “that was amazing! You did great.”

Still, nothing. I couldn’t believe it. Even though he’d jumped up and down at the moment he’d scored, now it somehow didn’t matter. It was almost as if he’d forgotten he’d scored. It was puzzling, to say the least. I came down from my soccer goal high with an abrupt crash. I thought that for at least one bright and shining moment, Grant had wanted what every kid wanted—to score a goal—but I was wrong. He’d scored and he’d been excited, but it had been so fleeting. If I’ve learned one thing about being a sports parent it’s that the fun of having your child score a goal isn’t just the actual scoring, it’s being able to share the moment with them and talk about it when they’re off the field.

As it happened, I had brought Christina from YouthCare with me to that game. She had wanted to witness what happened with Grant around sports so that she could come up with strategies to help him.

“What do you make of his lack of excitement?” I asked her.

She didn’t seem surprised at all. “Kids with Asperger’s live only in the particular moment they’re in,” she explained. “The moment where he scored a goal, jumped up and down, and then highfived his teammates has passed. All you can do is, the next game, remind him about the goal he scored and try to remind him of how good that felt. It might work and it might not work.”

She also suggested videotaping his games. “It would give you a chance to share the moment with him and also to show him what is expected in that environment. Talk to him about the positive things he did in the game and what the effects of those were. Then refresh his memory before the next game and see if it keeps him on task and more focused.”

This was one of those sobering moments when I realized once again that Grant really
is
different. He will always be different, whether or not he scores goals. Scoring is not going to be an indication that everything we’ve been going through with him is behind us. It never will be. For me, I now realize, that’s the hardest lesson of all, the one that I resisted learning. Asperger’s doesn’t go away. This is who Grant is, and we need to accept him and love him, in all his quirky, emotional, adorable oddness.