The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (26 page)

I looked at the list. One name popped out.

“You know this kid,” I said.

“Who’s that?” he asked.

“He has Asperger’s,” I answered.

Curt turned that over for a quick second before elaborating. “At the meeting, people were yelling, ‘We’ll talk about him at the end of the draft. He’s a handful.’”

In Curt’s words, my biggest fears for Grant became a reality. They were probably talking about my son that way in another meeting. He very rarely gets the same coach from year to year, and I’m not surprised. One time an exasperated coach said about Grant, “His father’s a Major League Baseball player and he doesn’t even know how to hold a glove?!”

Part of it I understand. Grant is difficult. Kids like Grant can pose serious challenges on the field, where they can be on one minute and in their own world the next. It’s especially hard on a coach who has never been exposed to kids who aren’t typical. In light of this, it really was no surprise that the kid with Asperger’s was avoided by everyone in Curt’s draft but Curt. But it was still very upsetting, especially the things people said about him. I looked at Curt.

“That must be what they say about Grant,” I said. I thought about how misunderstood he must be by people outside our little circle. You can tell people he has Asperger’s, but a lot of the time people don’t understand exactly what that is. And the bottom line is, they don’t want him. I can’t even begin to explain how bad it feels to realize your kid might not be wanted. It’s humbling, to say the least, when you realize you can’t protect your child from this kind of thinking.

Unfortunately, it wasn’t long before I encountered this kind of attitude with Grant’s coach directly. That same season, after Grant had been assigned to a team, I called Grant’s coach to give him a headsup about Grant’s Asperger’s.

“Ah,” he said, “I figured it was something. I just didn’t know what.”

“Yeah,” I said, “some days he’ll be on, and other days he’ll be off and it won’t be so easy.”

Well, not even three weeks into the season, I discovered that Grant would often sit in the dirt and play rather than take the field, or worse, bat, since he had been hit by pitches a few times. It was hard for me to come to the game to watch him dig in the dirt. I called one of Grant’s camp counselors, Joelle, and asked for some advice.

“Don’t let him quit!” she insisted. “Ride out the season. It will be good for him.”

She offered to write a “social story” for him. It was a popular technique at YouthCare. She would write a story mapping out what was going to happen, like “On Tuesday, your team will be playing X other team…” The story would explain batting and fielding, how important it is to be a good teammate and stay alert. It was remarkable. The more he read it, the easier the game would be for him. He would understand the changes and be ready for all transitions.

Joelle also told me to ask the coach if he would mind doing one small thing: Instead of asking Grant if he wanted to play, to which Grant would say no every time, to give him a choice of two options. For instance, ask him whether he would like to bat fifth or eighth. The choice would be his to make—it would be on his terms, which would keep him engaged.

I called the coach and thanked him for coaching. “It’s a big commitment,” I said. Then I asked him if he would mind if I made a suggestion that I had learned from Grant’s counselor. I told him what Joelle had said about giving Grant two options.

“Shonda,” he said, “you know it isn’t always about winning. I don’t have a problem with a kid who comes here and tries. I do have a problem with a kid who doesn’t try.”

I don’t think I could have been more stunned. The man clearly didn’t get
it. He didn’t understand that if it seemed Grant wasn’t trying, it wasn’t because he didn’t care, it was because he had certain neurological issues. To add insult to injury, the coach suggested that Grant played better when Curt was there. Once again I was back to defending my parenting and my choices about Grant’s playing. Out of sheer shock, I said, “I am very shaken up and cry almost every day over these battles.”

“There’s no reason to be upset,” he said. “He’s a nice kid.” I thanked him and hung up. So much for understanding.

A
FEW WEEKS LATER
, C
URT
was interviewed on the radio. The host of the show asked him about the YouthCare event, and why he was involved.

“We have a child with Asperger’s,” he explained. “YouthCare is a great camp for Asperger’s kids and their families.”

He then told the story about the draft for the team he was coaching. He expressed anger over the way the other coaches tried not to get saddled with the Asperger’s kid. His intention was to convey how sad it was to think that his own son could be looked at that way.

That night I had a Medfield baseball/softball board meeting. It was a board that had only one other woman on it besides me, and many men. There were about twelve men there that night with whom I’d worked closely over the past year to raise money for the baseball and softball fields at the local high school. You could feel the tension in the room. The board had made a decision with regard to Grant’s friend Stephen, who has Down’s syndrome: They decided it wasn’t safe for Stephen to play anymore.

Listening to them debate, I felt partially responsible for this drama. Two years before, I was coaching softball and the opposing town had a player with Down’s syndrome. It was beautiful and uplifting to watch her interact with the other girls, and the girls with her. That inspired me to reach out to Stephen’s mother, Reka.

“Have you ever considered letting Stephen play baseball?” I asked.

“No, I haven’t,” she said.

I told her about that special little girl. I talked about how Grant played, and so did his other best friend, William, who suffered from spinal muscular atrophy and was in a wheelchair. William wasn’t able to play the way the other kids did—the strength in his arms had been starting to weaken—but when the season was about to begin, they found a way for William to stay in the game: He would become the “assistant coach,” in charge of the lineup. William is an avid baseball fan, and this was a perfect alternative for him that allowed him to be included.

Reka signed Stephen up then, and he was on the same team with Grant and William. When she went to sign Stephen up this year, she assumed the season would go the way it had last year. But now things were different. The league told Reka this year that it would be dangerous for Stephen to play and that maybe he should play on a special team for handicapped kids. She was devastated. I was, too, because I felt I had set her up for this heartache. Not to mention that the kids were still at an age where they weren’t so likely to get hurt.

I talked to the person who had turned her away. I had known him for years, and he is a nice, nice man. He was upset about the decision but said it became an issue of liability. In talking to him, we both decided that maybe we should invite Reka and her husband, Nick, to a practice and let them decide whether it was too rough for their son. They agreed. I figured I should be observing a practice, too, to see whether Grant could get hurt.

I spoke at the board meeting and explained that Nick and Reka were going to watch a practice. “I assure you that Reka and Nick would never put their son in harm’s way,” I said. “And, by the way, since when did third grade baseball get so competitive that we can’t find a spot for Stephen on the team? None of these kids will ever make it to the big time. I live with a major league player, and believe me, it’s probably never going to happen. And if it is, this third grade season won’t be the one that makes or breaks your nineyearold.”

I just couldn’t believe people could be that serious about the success of their kids’ team in the third grade. Wasn’t it more important at this age to include someone like Stephen? I thought about all that the kids could learn from having him on the team. That was much more important, in my eyes, than winning.

I referred to Curt’s draft experience. “I essentially have that kid you were all talking about,” I said, my voice cracking. “I have a kid with Asperger’s.”

Well, I hit the hot button. I was screamed at by one man who started pointing his finger at me and saying, “I took that kid for two years, and I had other kids’ parents consoling me for the way he acted and the way he spoke to me.” Then more of them jumped in.

“I don’t like the way Curt talked about our Little League on the radio,” one said. “We do a good thing, and we don’t deserve to be painted that way.” It got ugly. Some people spoke to me more disrespectfully than I have ever been spoken to—and for something my husband said, no less. If you know Curt, he has had a lot to say over the years. But they aren’t things that I’ve said, and I shouldn’t be held accountable for them.

I was in shock and complete disbelief. I fought back tears in this room filled mostly with men. I knew that if I cried, it would be clear they’d gotten to me, and I didn’t want to give them the satisfaction. They were so busy yelling at me for the way Curt had portrayed them, yet none of them had the guts or nerve to actually talk to Curt about this. But the truth is, I have been involved in kids’ drafts for years, and it isn’t just our town. There are coaches in every town who act this way.

“That is basically my kid you’re talking about,” I kept telling them.

I eventually had to walk out of the room. You know how sometimes, after a fight, you shake and cry a little? Well, I did both,
a lot,
in the bathroom. Being attacked without any ally to defend me was horrible.

Many of those men later apologized to me for some of the others, saying they were so shocked at their attacks on me that they felt frozen. To this day,
the ones who went after me have not apologized. Nor have they ever had the guts to say anything to Curt about what he said on the radio. No, they came to me.

It’s okay. I don’t need their apologies. Their behavior was an inadvertent gift to me. Ever since Grant’s diagnosis, I’d been living in fear about what other people were saying about him, about how they were judging him. While this meeting had confirmed all those fears in a painful and aggressive way, it was also a powerful wakeup call. It made me angry, but it also showed me just how much people needed to be educated about Asperger’s. Suddenly what had begun with the Asperger’s Association and YouthCare events became a mission. I refused to sit back and have people treat my son badly or speak negatively about him. I was going to become an advocate, for my son, and for others with Asperger’s.

In the end, despite all the fighting and the bickering, there was a happy ending for Stephen and his parents. The board and Stephen’s parents came to an agreement that Stephen wouldn’t play on the field but that he would be the first batter up every inning. He would run the bases and it would never count. Stephen was thrilled. The kids and parents all cheered loudly every time he ran the bases. He smiled the whole way, and then his teammates would greet him at the fence to highfive him. It was thrilling and heartwarming to watch and be a part of that, and to see him included.

There, on the field, I realized that you can’t tell kids how to be kind to people who are different. You have to show them.

thirteen

Like Father, Like Son

O
NCE
C
URT HAD COMPLETELY COMMITTED HIMSELF TO RETIRING
, he was able to see what life was really like with Grant—fulltime. When he retired, Curt had a lot to walk off the field to. His oldest son was about to start high school, his little girl suddenly looked like a teenager, Grant faced challenges each and every day, and Garrison was already in the first grade and not a baby anymore. It was a lot for him to digest and adjust to.

Suddenly Curt could see with his own eyes how Grant drained me and would try to intervene, and sometimes he’d still yell, which I couldn’t stand for. I’d try to listen and let him handle it, learning for himself, for as long as I could. But then that mother bear instinct would take over and I’d try to get him to stop.

“Stop yelling at him!”
I would shout at Curt.
“It doesn’t work!”

While Curt had been working with me to rewire our parenting skills for months, it came as little surprise to both of us that I’d had more practice with it. Though Curt had made tremendous progress with Grant through video games, they still were not connecting on an emotional level.

Finally, one day after Curt and Grant had gone through a few frustrating exchanges, I simply told Curt, “You need to find something in common with Grant.” As you can imagine, telling Curt how to parent went over real well. But the good news was that Curt realized there was something behind what I was saying. That was where the Cub Scouts came in.

I had suggested Cub Scouts because I thought it would expose Grant to great learning experiences with other kids, and it would also give Grant and Curt some special time together. There was a lot of interactive dad and son stuff, which might allow them to find common interests while giving Curt the chance to observe some of Grant’s social tics.

In the beginning, things weren’t exactly smooth. Grant’s aversion to new things made Cub Scouts something of a tough sell, and while there were aspects that got him engaged and excited—campouts, sleepovers, getting badges—there were also more mundane things that just didn’t grab him, so he’d space out instead. But regardless of his hesitation, Curt and I decided it was worth taking a chance. We pushed him into Cub Scouts and hoped for the best. We weren’t let down.

It didn’t take long for Curt and Grant to have some really nice bonding experiences through Cub Scouts. On their first overnight, they built their tent together, brought snacks, and did the whole campfire thing. It was freezing, and for some reason Curt had bought a sleeping bag that would have only fit Grant, so they had to share Grant’s fullsize bag and sleep together. It made me smile to know that Grant had had his dad’s undivided attention for one day. That is not something Curt had done with anybody else in the family. Curt, for his part, came back beaming because Grant had been engaged the entire time and they’d had a blast together.