The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (16 page)

The first thing I learned about it was how close it was to our house—only about fifteen minutes away. Considering all the trouble Grant had gotten into at regular day camp, I liked the idea of him being close enough for me to inter
vene if things didn’t go well. I thought,
Well, of all the camps in Boston, at least this one is close by
.

But there was so much more to it. When I did a little research into it, and then met with people there, I discovered that YouthCare was truly one of a kind. The camp has been around for about twenty years, working with kids with Asperger’s and autism since way before the conditions were diagnosed so commonly. The people there are dedicated to those kids and are incredibly knowledgeable about their issues. Scott McLeod, the executive director, has been involved with YouthCare for nineteen years and has run the organization for six. That’s commitment. These people clearly believe that what they’re doing is important.

The more I learned, the more I wanted Grant to benefit from this incredible system. I quickly applied for enrollment in the summer camp, and after a short time, they called and asked for an interview. I felt as if I had hit the jackpot. A summer camp experience for kids with Asperger’s, where they’d teach them skills for coping in life, and it was only fifteen minutes away? It sounded like a dream come true

I took Grant to the interview, and for the first time in my life, I was afraid he would be too well behaved and that because they wouldn’t recognize his issues they wouldn’t take him. Grant is very highfunctioning, and he can be very charming, especially with adults. Besides, this seemed too good to be true. Something just had to go wrong.

We arrived at the interview and began to talk to the administrator. Grant did what he does all the time: He touched every single thing in that office. He didn’t look at the administrator and could barely respond to her questions. He was in his own world. Walking into this room filled with all this new stuff just drew his attention away from what was going on.

I had no idea what the administrator was thinking. I couldn’t help but anxiously wonder,
Would we get in or not?
After we’d been in her office a while, she clued me in.

“I have one spot open,” she said. “There’s a group that has five boys with different variations of social issues. Grant would be a year younger than the others, but I still think he’d be a perfect fit.”

I was so excited, and proud, too. I felt as if Grant had just been accepted to Harvard.

I later told her, “You know, I had been afraid Grant would be too charming and wellbehaved at the meeting, camouflaging his issues. I was afraid he wouldn’t get in.”

“Oh, no,” she said. “I could tell within two minutes of seeing him that Grant had Asperger’s.”

I was floored. What took me almost seven years to figure out took her just two minutes. At once I felt grateful, hopeful—and like an incompetent parent. All over again.

With the acceptance at the camp came a new realization: It was time for Curt and me to tell Grant about his Asperger’s. It had been building for months now as I piled on more and more information, and both Curt and I finally felt ready to tackle the task of talking to him. We’d been talking to several other families about how they’d handled it and we felt confident that now was the time. All of us in the family (with the exception of Garrison, who also didn’t know) had been changing their attitudes toward Grant for the last few months, and he needed to understand why. Also, we were going to start giving him certain kinds of advice to help him, and it only made sense for us to tell him why. Not to mention that he would be going to a special camp, and would probably ask why none of his siblings were going.

We also decided that this was something that could not be done oneonone with Grant. We didn’t want it to seem as though we were hiding this or that it was private. Of course, Gehrig and Gabby knew, but we wanted Grant to see from the beginning that we were all in this together to help him. Grant’s Asperger’s was something we needed to deal with as a family, and one night at dinner with the whole family we broke the news.

“Grant, your mind works a little differently from ours,” Curt explained. “It’s because your brain is wired differently. It’s not bad—it’s just different.”

“You’re very smart,” I added. “You’re very funny and loving, too. But sometimes you do stuff that people just don’t understand, and that has to do with your different brain wiring.”

As an example, we mentioned the way he often talked over everyone. “You know how we’re always stopping you from talking, and trying to get you to give others a chance?” I asked.

“Yeah,” he said, nodding his head.

“Well, that’s the sort of thing that most people know how to do. It just comes to them naturally. For you, it’s different.”

Surprisingly, Grant was not fazed at all. Garrison either. I was pleased.

“As a family, we’ve decided to all help you when you’re doing something that other people might not understand,” Curt told him. He seemed fine with that. We decided to try and come up with a family code word. Whenever we said that word, Grant would know to stop whatever it was he was doing.

This is where the conversation took a sharp turn away from the mature, intellectual discussion I’d been hoping for.

“Hey, how about we say ‘Turd knocker,’ so you’ll know to stop!” Gehrig suggested.

“Or what if we say, ‘You’re a booger,’” Gabby said, laughing. This code word thing was not going to happen.

I had prepared myself for the possibility that Grant would be upset by this topic, but surprisingly, he was excited. He seemed to feel good about the whole family taking such an interest in him. He loved the attention and didn’t give a second thought to having been told he was different. It seemed he really didn’t care.

As I cleared the table that night, I kept thinking,
That was just too easy.
It had been a long time since something felt too easy when it came to Grant.

nine

One Happy Camper

W
HILE
I
FELT
I
WAS MAKING A LOT OF PROGRESS IN UNDERSTANDING
Asperger’s and opening myself up to the ideas and techniques that I needed to relearn as a parent, the bad news was that once again I was doing it all without Curt. In February 2008 he went to spring training, so he wasn’t around to learn alongside me or to help with Grant. He also wasn’t there to see what was happening with Gehrig at dinnertime.

Dinnertime in my house had never been terribly easy. Because of all our traveling as a baseball family, my kids got very used to eating at restaurants on the run and ordering whatever they wanted from room service in hotels. The menu rarely strayed far from grilled cheese, peanut butter and jelly, and of course, ballpark hot dogs. The concept of everyone eating the same food, at our own dinner table, was introduced late in the game—probably not until we moved to Massachusetts. My kids have very limited palates, which, I’m sorry to say, they get from their father. Vegetables are a very hard sell all around.

We always had an especially hard time getting Grant to eat what was
being served. Before his diagnosis, we had no idea why, but he would arbitrarily refuse to eat certain foods. After we found out about Asperger’s, we came to understand that some foods he won’t eat because of his sensory issues, which cause him to hate certain textures. But there have always been other foods he’d reject that we knew he loved—mashed potatoes, for instance. He’d become completely obsessed with a food like that for a while and want to eat it at every meal, every day. Then all at once he’d snap out of the obsession and refuse to eat it. Sometimes he’d request a food for dinner—pork chops, maybe. And then when it was being served that very night, he’d recoil from it. Of course, he’d probably wait until you put it on the table to change his mind.

Even when he wasn’t digging his heels in and refusing to eat, Grant was usually too busy talking to take in enough nourishment. He talked and talked and talked over everybody. One of the byproducts of his inability to read social cues is that he didn’t understand how to have a normal conversation. In the same way he didn’t know to give other kids turns sliding down the slide at a pool, he didn’t know to let other people speak.

In the past, our misguided way of dealing with Grant’s refusal to eat was to yell at him.

“Grant, eat that!”
I would shout.

“No!”
he’d shout back.

“Eat that now or you’re not leaving the table!”
Curt would shout. For some reason, I’d get angry at Curt for shouting, even though I was doing the same exact thing. Maybe it was because he was so much louder than I was. So we’d scream and make Grant eat. He’d cry and cry. And then he’d throw it up. Right there, at the table.

Once we understood that there was a reason Grant was being so strange about food, the first thing we did was stop yelling at him, but it would be a while before we learned how to get him to eat enough and stop talking over everyone. Still, at least the yelling stopped.

But just as the yelling at dinner was stopping, a new problem was starting;
namely, Gehrig was now refusing to eat. Only it wasn’t as obvious as that.

I’d first noticed that there was something strange going on with Gehrig and food during the spring of 2007, around the time he was diagnosed with ADHD. Seemingly out of the blue, I’d realized that both Grant and Gabby both ate more then Gehrig did. I mentioned it once in a while.

“Gehrig, how can you not finish that hamburger?” I’d ask him as he pushed aside the food I’d gotten him at the McDonald’s drivethrough. “Garrison is five, and even he can eat a McDonald’s cheeseburger. Why can’t you?”

When we were at sporting events, I would listen to stories parents told about their boys—Gehrig’s age—starting to eat everything in the house. I rationalized to myself that Gehrig had been a May baby. He was a little bit younger than some of the kids, so maybe it was okay that he was a later bloomer. But I didn’t completely buy my own argument. I started to talk to my mom, my girlfriends, and Curt about it. No one else seemed alarmed, but my gut just didn’t feel right. Once again I felt people secondguessing my instincts as a mother, and I didn’t like that. So I made an appointment with the doctor at the beginning of that summer.

“I don’t think Gehrig eats enough for his age,” I said to the doctor.

“Well,” she said, after examining him carefully, “if he doesn’t gain a pound or grow an inch by the end of the summer, we’ll run some tests. But don’t worry about it.”

That worked for me. I could give it a couple of months. But then, when I got home, my mind went right to the bad place. I had met too many families with sick kids in all my years of baseball and had filled out too much paperwork around my melanoma diagnosis to forget that weight loss and loss of appetite are symptoms of some forms of cancer. I didn’t want to put my mind there, but those thoughts couldn’t help but linger.

That was also the summer Gehrig’s younger sister grew five inches. I swear, in the past she would grow and two days later he would wake up and be the same height. It bothered Gehrig terribly that Gabby was now taller
than he was. No matter how many times I tried to explain that sometimes girls grow earlier than boys, it didn’t ease Gehrig’s pain.

That summer, when Gehrig played Pop Warner football, he seemed to have a better appetite. That made me feel a little better. At the end of the summer I took him to the doctor again. He’d grown half an inch and gained one pound.

“He didn’t lose weight,” the doctor pointed out. “He may not have grown or gained a lot, but he is moving in the right direction.”

She didn’t feel that there was a problem. I was able to exhale for the first time in a while. Sitting all summer with this gnawing suspicion that something was seriously wrong had worn on me. When the 2007 school year started and Gehrig resumed throwing away his Adderall pills, I called the doctor to ask whether it was possible that it could really leave a bad taste in his mouth.

“Absolutely not,” she said.

I couldn’t understand why Gehrig was trying to control this so much. He and I got into fights over it.

“You need to take the medication, Gehrig,” I argued.

“Why do I have to?!”
he’d shout.
“I don’t want to!”

“Well, at least stop throwing them away in places where your little brothers and the dogs can get them,” I said, and gave up on trying to get him to take his medicine.

Things had continued on like that until around February 2008. Then one night I was eating at a restaurant with Gehrig, his friend Joey, and Joey’s mother, and I watched silently as Gehrig pushed his food all over the plate without ever taking a bite. Meanwhile, Joey seemed to inhale his food in what seemed like a series of large gulps.

“Why aren’t you eating?” I finally asked.

“I don’t like this food,” he answered. It was a comment I had been hearing way too often.

I was upset. I’d just watched his friend eat everything on his plate and then start picking at ours. I went home that night and called Curt at spring training.

“Curt, something is just not right with Gehrig and his eating,” I said.

“Don’t worry about it, Shonda,” Curt said dismissively. “He’ll eat when he’s hungry.”

I was right back to where I’d been ten months before, when I wanted to take Gehrig in for ADHD testing, and four months before, when I’d noticed differences in Grant. Once again Curt was doubting my instincts, and it made me so mad I wanted to scream.

I searched my mind for reasons Gehrig might have stopped eating. Was he upset that Curt had left again for spring training? Was it because Grant was now getting more attention and being treated more leniently because of his Asperger’s? Was it because of a girl? I just wanted to make sure he knew he could talk to me about anything. Over the next two months, I would ride Gehrig all the time about eating. I didn’t care
what
he ate, as long as he did. He could eat cereal for breakfast, lunch, and dinner if he wanted for all I cared.