The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (30 page)

When we returned from the party, Curt tried to talk to Grant, but he buried his head in the couch and flopped around, screaming into the cushions. We tried days later to talk to him about it, but he still refused—the wound was still too fresh. Eventually we hope to have a conversation with him about how he could have brought about a different outcome. We’ll want to help him try to understand why taking the cards wasn’t such a good idea after all.

Still, as problematic as Grant’s obsession with Chaotic cards proved to be
in this case, I have faith that some of his interests will eventually lead him to find likeminded friends. There are plenty of kids who don’t have Asperger’s who still get focused on things that are no longer “age appropriate.” I can only hope that some of the work we’re doing with Grant will help him to meet kids who are into similar things, so that when he comes into contact with them, he’ll be able to spot a kindred spirit. In the meantime, I try to tell myself that being a nerd isn’t the end of the world. I mean, look at Curt. He turned out all right.

fifteen

Lessons for a Mother from a Son

I
MAGINE YOU’RE IN THE MIDDLE OF GIVING A PRESENTATION
to a huge audience of all the most important people at your job, and your mind suddenly goes blank. You know you’re supposed to say something, that the crowd in the room is waiting for you to say something, but for one reason or another you just can’t muster the words that are expected of you. You look down at your notes, at your PowerPoint slide. You search the room, trying to read the faces of the people around you, but they all hold the same vacant, emotionless stare. Your mental processes go on total anxiety overload. Your thoughts and feelings become nearly impossible to distinguish and blend together into one seemingly inseparable reaction that’s impossible to contain.

This is what kids with Asperger’s feel like every day, in every situation that comes up that they are not prepared for. This is why they like schedules and routines. It’s comforting for them to have details they can count on when they feel otherwise out of control. Schedules and routines help them feel prepared. They like things to perfectly match their expectations, and have a very difficult time dealing with any variation on what they thought was coming.

But life doesn’t come with an activity schedule, and this more than anything else is what preparing for a future with Grant is all about. Probably the most difficult aspect of Grant’s Asperger’s is accepting the permanence of it. That, and the guilt I bear about having missed the clues for so long and treated him harshly under the assumption that he was simply disrespectful of me. I will probably wrestle with that for the rest of my life. I don’t know if I’ll ever forgive myself.

But as hard as it has been to come to terms with the past, what I’ve come to realize is that we are only at the beginning of understanding Asperger’s, and it’s going to take many years of trying things to figure out how to help Grant cope and succeed. There will most likely be a good deal of trial and error, since there are still many things unknown about Asperger’s, plus everevolving and conflicting schools of thought. One set of doctors would insist that we cut certain foods from his diet and prescribe homeopathic remedies. Another would prescribe various pharmaceuticals. On the advice of other parents who have tried diet change with no great results, we’ve decided to spare ourselves the added drama of trying to wean Grant off the many common foods that contain wheat and dairy. We’re of the mind that there’s no wonder drug for Asperger’s, although Grant does take Adderall, which helps a ton with his ADHD.

There is no onesizefitsall solution. One of Grant’s teachers recently said to me, “If you’ve met one kid with Asperger’s, you’ve only met one.” Some characteristics are consistent from one Asperger’s kid to another, but each case is unique. Whether with sports or animals, transferring schoolwork to the computer or breaking his homework into smaller chunks, we’ll have to keep finding what works for Grant in particular.

While learning what’s behind Grant’s unusual behavior has been helpful and has taught us how
not
to react to him, it’s still often a mystery knowing how
to
react. And often the techniques that work with him on most days just don’t work on others. That’s the thing about Asperger’s, you never know what
you’re going to get. We keep our fingers crossed with each interaction with Grant, hoping it goes smoothly. But every single one has the potential to turn into a disagreement.

A couple of recent flareups took me by surprise. The first happened at the dentist’s office. The last time we went, Grant was perfectly charming and obedient, which was not the norm. Like most kids, Grant was never particularly fond of the chair or the dentist, and his Asperger’s makes it extremely difficult for him to get through an appointment. After that last appointment, I thought maybe we had come to a new place with him and dentistry. But this time he was completely out of control. The dentist couldn’t even get him to open his mouth so she could count his teeth. He’d open it long enough to scream, and then shut it. And he flipflopped in the chair.

It wasn’t until the dentist negotiated with him to choose a flavor of tooth-paste and brush his own teeth that he came around. Maybe it was because she gave him something he could do on his terms—choose a flavor, and brush his own teeth. Still, I didn’t see that one coming. And by the time he mellowed out, I thought I was going to lose it.

The second incident was dinner at IHOP. I went there with the three boys on a night when Gabby and Curt had other obligations. The kids all love pancakes, and there are many other things on the menu, too, which makes it an easy option for Grant, who is always so difficult to please at dinner. You never know what foods he’s into refusing and which he’s stuck on, hoping to eat them every night, as on his recent steak streak. Taking him to a place where he’d have choices seemed to eliminate one problem for the evening. I thought it was a nobrainer; no matter what he was into, it was probably on the IHOP menu.

For some reason, though, Grant decided on the drive that he didn’t want to go to dinner there. Just like that, even though I had prepared him by telling him the plan earlier, and he seemed fine with it. Even though I now know this is a characteristic of kids with Asperger’s, it still amazes me how rigid Grant can be. I have to remind myself that it’s not because he wants to be a pain in
the neck. It’s because of his processing issues and his neurological inclination toward emotional overload. “I’m not eating there,” Grant said. I just continued to drive. He said it over and over again. When we pulled up to the restaurant, I said, “Okay, out of the car.”

“No!”
he insisted.

So I took Gehrig and Garrison in. We were parked in view of the front door, so I could watch him from inside. After about fifteen minutes, Grant came in and was fuming.
“You left me in the car!”
he yelled, and then refused to sit with us. He sat at a table across the aisle instead.

“Would you like something to eat?” I asked, trying to neutralize the situation. In the past I would have scolded him, but instead I just let him sit there, knowing that harsh words would only escalate the problem and further ruin Grant’s appetite. At that point I figured that during the extra time in the car he might have gotten hungry and/or sorted out his feelings. But apparently not.

“No!”
he yelled.
“I’m not eating!”

I quietly asked the waitress to bring him some pancakes anyway. In the past it’s been hard for him to resist eating when everyone around him was, although that has never kept him from yelling at me when the food arrived, anyway—even when he has gone ahead and eaten it. But that stage was apparently over, because that night he still wasn’t willing to touch his food.
“I told you I’m not eating it!”
he yelled.

I told the waitress to just put it down, and when she did, Grant pushed it to the other side of the table.
Great,
I thought.
Now he’s made the waitress feel uncomfortable.

I didn’t know what to do with myself. Just then, Gehrig looked at me. “Mom,” he asked, “how do you do this every day?”

I was touched by Gehrig’s recognizing my struggle, and for a moment, felt less alone. “Deep breaths,” I answered.

When we got home that night, sure enough, Grant asked me for something to eat.

“Okay,” I said, “but you’re going to have to make it yourself, buddy.” That was it—once again he was set off.

“I told you I wasn’t willing to eat there and you made me go!”
he shouted, completely unaware of the fact that there were three other people who were perfectly willing to eat at IHOP. In other homes, when the mom says, “We’re going to dinner there and that’s it,”
that’s it.
But not in our house, not with Grant. Sometimes there’s just no way for me to win.

As frustrating as confrontations like these can be, one of the more helpful side effects of Grant getting older is that he’s beginning to have more selfawareness (sometimes) about his behavior and realize that his actions have an impact on the other people around him. Occasionally he’ll come to me a few hours or even days after one of his blowups, once he’s had some time to process everything.

“Mom,” he’ll ask sheepishly, “are you mad?”

That gives us a chance to talk about the situation on his terms, which would never work in the heat of the moment. When a kid with Asperger’s is lost in his emotions, you don’t stand a chance of helping him understand what’s going on and what’s wrong with his behavior. When you go back later and revisit the situation, you have an opportunity to talk about other choices they might make the next time. In those instances, I can resolve things with Grant—but not without getting completely drained. Still, the mere fact that we’re able to have those conversations is encouraging, and a perfect example of something that we wouldn’t have been able to do even a year ago.

W
HILE
G
RANT’S
A
SPERGER’S CAN
be exasperating, there are aspects of it that lead to moments of great laughter, too. Perhaps the best part of growing more comfortable with it is that I feel as if for the first time in a long time I’m able to loosen up and laugh.

One of his funnier characteristics is his penchant for blurting out painfully honest statements. If Grant has a thought or a feeling, he can’t hold it in. It’s one of the reasons he and so many other kids with Asperger’s have difficulty in social situations. They say the things that other people just think but keep to themselves for fear of hurting someone’s feelings.

For example, there’s a woman who comes to clean our house on Thursdays. She has a lot of stories to tell, and she likes to talk.
A lot.
One day, when she was there and chatting, Grant went right up to her and said, “Man, do you ever stop talking?” I tried hard not to laugh. It was especially funny to me because it was exactly what I had been thinking.

Curt has fallen victim to Grant’s blurting, too. Curt has a tendency to rush through meals, eating very quickly. One time when we were in Puerto Rico, we went to a Japanese restaurant where they had a hibachi. They cook your food right in front of you and serve many courses, cooking the whole time. Well, by the time the food was on the table, Curt was practically done with his portion. We all noticed it, but only Grant said anything about it.

“You’ve gotta slow down, Dad,” he said. “What’s your hurry?”

At school, Grant recently learned that chewing tobacco is a drug. Curt unfortunately chews it, and one day, when the two of them were together, Curt stopped at a convenience store to get some. Well, when Grant heard Curt ask for the tobacco, he became very vocal.

“I can’t believe this place sells you drugs?!” he shouted at the top of his lungs, over and over again. Curt kept trying to quiet him, but he wouldn’t stop.

It’s hard not to get mad at him in moments like that. It can seem as if he’s being disrespectful. But like me, Curt is coming to accept that Grant says those things simply because he doesn’t have the same mental filters we have. When he says things like that, we try to guide him by telling him, “That’s not a very nice thing to say.” In the moment, we both attempt to keep a straight face so that he knows we’re serious. But when Grant isn’t around, we laugh out loud every time we retell the stories.

Maybe it’s funnier when he’s brutally honest with other people, though. Not long ago, I went bathing suit shopping. We were going on vacation. I hadn’t worn a bathing suit in years—not since I’d had melanoma.

Grant was with me at the store. I grabbed a few suits and tried one on. When I came out of the dressing room to look at myself in the mirror, I asked Grant, “So, what do you think?”

“Well,” he said, “You look like a fortyyearold trying to look fifty.” My jaw dropped.

“What did you just say?” I asked, shocked and insulted. Then I composed myself. “Did you mean that I looked like a fortyyearold who was trying to look thirty?”

“No,” he said. “You look like you’re trying to look fifty.” Well, I guess that was his honest opinion. He didn’t mean to hurt my feelings. But you can be sure I skipped the bikinis and went right for the onepiece suits.

It’s not all Don Rickles humor, though. Grant’s incredible sweetness can also be a source of some very funny and touching moments—like the note that I got from his fourthgrade teacher, Miss Hayes.

“Grant made me chuckle when he figured out I was a ‘Miss,’” she wrote.

“He was very concerned for me that I don’t have a husband. It was genuinely very innocent and cute. I should have him talk to my mom about it. Together they could worry.”

When Grant was in the third grade he kept pestering Mrs. Trikulous to let him read a story he had written. She kept putting him off, telling him it was not the time for his story to be read, not to mention that the story he’d written was something he’d done of his own volition—it hadn’t been a classroom assignment. But he kept on and on until finally she relented and let him read his story. She was quickly bowled over by the story he’d written. He’d made every kid in the class a heroic character in a fantasy tale. And he’d done it all for the sake of making his classmates smile, which he did.