The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (13 page)

“Her pants are too short,” I heard one girl whisper to another in a pack of about five of them. They all giggled as they gave me the onceover.

“And what kind of outfit is that?” another asked, just loud enough for me to hear.

I was devastated. Completely humiliated. I spent most of the rest of the day hiding in the bathroom, except for when I knew I was needed in the meetings. I cried and cried. I felt like an outcast. The day seemed to take forever to end.

After feeling the way I did that day, I was determined never to let any child of mine feel that way or treat anyone that way. While Gehrig and Gabby had ADHD, I didn’t worry too much about them being stigmatized for it, since there are so many kids who struggle with that. But now that Grant had
autism, how was he going to get along? How was he going to avoid being labeled as different? Ever since I’d been a parent, I’d been raising my kids so that they wouldn’t have to know the pain of being different. I’d been confident that my parenting skills were enough to get them through whatever obstacles they faced. Now, with this diagnosis, suddenly I wasn’t so sure. All I could think of was myself in the seventh grade, sitting in the bathroom stall at school, waiting for the school day to end, and how I never wanted Grant to feel the way I had.

S
CHOOL STARTED TWO WEEKS
later. We had yet to receive all the details from Grant’s tests at the neurologist’s office, so we’d made another appointment for both Curt and me to go a few weeks into the school year. One day before our followup appointment with the doctor, I was at Grant’s school when I bumped into a school administrator in the parking lot.

“So Grant has Asperger’s syndrome, right?” she asked.

“Asperger’s syndrome?” I replied. I had heard the term before, but I didn’t really know what it meant. “No, the neurologist didn’t say that to me.” I suddenly felt panicked. “He said something about Grant being on the autism spectrum, but we’re going for another meeting soon.”

I was frazzled. Was this another thing I needed to look up online and learn about? I tried to keep myself together and resisted the urge to run to the computer. All that had gotten me last time was worried. With our appointment close enough, I figured I could wait and find out for sure what was going on.

When the date finally rolled around, I was relieved that Curt was there to come with me. Now he, too, could hear this straight from the doctor. In addition to giving us more details about Grant’s situation, the doctor also confirmed what the school administrator had said: Grant had Asperger’s syndrome. I asked the doctor to explain it to us so that Curt and I could both hear it.

The doctor explained that Asperger’s is the result of different wiring in the brain’s frontal lobe. It makes certain things—especially social cues and interactions—very challenging for kids who suffer from it. Yet they are some of the most empathetic, loving, and intelligent people in the world. They tend to be very bright, too. Albert Einstein, Benjamin Franklin, George Washington, Napoleon, Abraham Lincoln, and Harry Truman are all believed to have had Asperger’s. He told us there are also sensory issues—explaining why Grant needs to touch things, and also why he likes to slam himself into people. There are problems with certain kinds of processing, especially when tasks require multiple steps. And transitions can be difficult. We knew that last part all too well, considering how hard it had always been to get Grant from point A to point B, even if ice cream or Legos were at point B.

One of the most surprising things the doctor said was that we shouldn’t write this information in Grant’s school file. That made no sense to me. He didn’t think we should put a label on him. I didn’t know how he would get help with his problems at school if his school didn’t know he had Asperger’s. I wanted to tell them, not only because they could help him, but selfishly, as well: I needed them to know that the challenging aspects of Grant’s personality were not the result of bad parenting on my part. I’m not sure why this was so important to me, but it was.

The most eyeopening thing the neurologist pointed out was that Grant wasn’t acting out or being difficult on purpose. He acted the way he did because of the way his brain was wired. He couldn’t help himself, and our yelling at him was not only unhelpful, it was making matters worse. In his world, in his brain, his actions, reactions, and outbursts were perfectly normal. They were all he knew how to do.

Suddenly my mind flipped through a slideshow of every time I’d lost my patience with Grant and screamed at him. I felt awful. Grant had never meant to be mean. He’d never intended to be disrespectful. He did all the things he
did because his brain told him to. In response, we’d yelled and yelled at him. That was going to have to stop. Our yelling days were over.

Toward the end of the meeting, the doctor switched gears. “Shonda,” he said, “I think you should consider getting some help.”

I was stunned. “What do you mean, ‘help’?” I snapped. “Maybe some medication, maybe talk to someone.”

I felt a flame rush up through me. It was the heat of anger. I was mortified. Who was this guy to tell me I needed help? In front of Curt? I felt as if he was criticizing me, saying, “Oh, Curt, you’re fine, but your wife? She’s totally nuts!” I had been pushing myself day after day for years, juggling a family that had three kids with ADHD, one of whom apparently had Asperger’s—not to mention a husband who also had ADHD and was never around. And now this professional was telling me I wasn’t doing a very good job of it. I could barely contain myself.

“I beg your pardon?” I said, my voice bristling with annoyance.

“I just mean that you have so much on your plate. This might be easier for you to handle if you had something or someone to help you emotionally.”

Maybe the timing was off. I had just finished taking in all this information about Grant. I wasn’t ready for this doctor to turn the focus on me. I couldn’t hear his words as anything but harsh judgment. It seemed he was basically saying, “You seem like you’re about to crack, lady.” Maybe it wouldn’t have been so bad if he hadn’t said it in front of Curt.

It took everything I had not to storm out of there. I had just gone through this long journey—mostly alone—and finally discovered that, just as I’d suspected, something was really wrong with Grant. And now the doctor and Curt were making me feel as if I was crazy. I was exasperated. Had we done anything right for our kids?

As we drove home that day, we pulled up to a stoplight right behind a car with a bumper sticker boasting, “My son is an honor roll student at Medfield High!” It was all I could do not to turn into Michael Douglas’s character in
Falling Down
. I wanted to slam my foot onto the gas pedal, through the floorboard, and into the car in front of me. But I quickly came to my senses. Those people weren’t to blame for feeling proud, and what was happening with my kids wasn’t their fault. It was mine. Or at least I saw it as mine. Absent someone telling me otherwise, and with a husband I had to kiss good night via AT&T every night, how could I not think this way?

On the ride home, we decided it would be important to tell Gehrig and Gabby about Grant’s diagnosis. Because they were the two oldest, we needed them to start changing how they treated Grant immediately. In time we would find the right way to tell Grant, but in the short term, we needed his older siblings to change their behavior.

We were anxious about how they’d take the news. We were wrestling with our own feelings about it, and we had no idea what it would mean to the kids, who, to our knowledge, had even less awareness than we did about Asperger’s. But we had to tell them because we needed them to behave differently toward Grant. The way we had all been reacting to him—mostly yelling—had to stop right then and there.

Back in Medfield, we brought Gehrig and Gabby into Curt’s office and told them we needed to talk to them about something. Like most kids, their first reaction was “What did I do? Am I in trouble?”

“No, no,” Curt assured them. “This is about Grant. We had some tests done on him, and the results show that he is on the spectrum of autism. He has Asperger’s.”

Both kids had a look of complete shock on their faces. Gabby suddenly started crying.

Interestingly, the kids had more awareness about Asperger’s than we did. Who would have guessed that kids would know more than adults about a thing like that? But they’d had kids with autism in their classes since they started school. They’d been exposed to it. They knew firsthand what the differences looked like.

“Actually, it makes sense to me,” Gehrig said. “I never could understand why Grant couldn’t finish a game with me, or why he’d get bored so quickly when we were doing something together.”

Suddenly Gehrig seemed sad. “I feel so bad for all the times I was mean to him,” he said. “I realize now that he couldn’t help it.”

Gabby’s reaction was much more emotional. She kept crying. “I feel horrible for all the times I ever yelled at him to get out of my room,” she said, “and for all the times I yelled at him to leave my friends and me alone because he wouldn’t stop bothering everyone.”

The four of us talked about how Grant’s brain is wired differently and about the aspects of Grant’s behavior that now made more sense in light of the diagnosis. For instance, we discussed his meltdowns.

“He has those because he can’t process what’s happening, and he feels as if he’s not in control,” I explained. “It’s going to be important for us to give him his space. And no more calling him a baby or making fun of him. That only makes things worse.”

We talked about how the yelling and the namecalling were all in the past. “Now we need to come together as a family and help him,” Curt said. “We have to guide him, and also protect him.” But most of all, the yelling had to stop, and we needed to start showing more love and patience.

The kids agreed.

Then Gabby said, “I’m afraid that Grant is going to grow up to be lonely and different.” I gave her a hug, and cried myself. Though she was only ten, she’d given voice to the same fears I’d felt ever since I’d typed the word
autism
into Google.

Despite our collective anxiety, seeing Gehrig’s and Gabby’s reactions told me that Curt and I had done the right thing by telling them first. They were both mature enough to use this information to help their brother, at least until the whole family had a better understanding of the kinds of changes this diagnosis would bring.

The lingering question now was how and when to tell Grant. While we wanted desperately for him to understand what he was going through, we also wanted to make sure we handled this with the utmost care, and in order to do that we needed to have a better sense of the facts ourselves. Together Curt and I decided to wait until we could do more research into the right way of sharing the news with Grant. That would give us time to get a better handle on Asperger’s in general and make sure that when we finally did tell Grant, we’d do it in a way that would be right for him.

I
T DIDN’T TAKE ME
long to look around online and realize that where the diagnosis of straight autism had seemed off, the profile of kids with Asperger’s fit Grant perfectly. I felt as if the people writing on those websites had met Grant and described him to a tee.

The syndrome was named for Dr. Hans Asperger, a pediatrician in Vienna, who in 1944 was the first to write about this neurological condition that he had noticed in some children he had observed. What I read over and over again was that kids with Asperger’s have different neurological wiring than most people, and that it dramatically affects their ability to understand social cues and their processing of various kinds of sensory stimuli. It isn’t an illness but a developmental disorder. And it isn’t something you cure—it’s something you learn to accommodate and compensate for.

The first and most obvious characteristic is an inability to read social cues. Kids with Asperger’s find it hard—painful, even—to look people in the eye, and even when they can, they don’t pick up on other people’s facial expressions. As a consequence, many of them don’t know how to have reciprocal conversations, and lack a normal sense of personal boundaries.

I thought about Grant chasing and poking kids older than he was—kids he didn’t know, who didn’t want to be bothered, and didn’t understand why this kid was poking them—and also about the way he used to like to scare us.
There was also his penchant for talking incessantly at dinner without letting anyone respond to him or break in, and his insistence on telling the same “funny” story over and over. It didn’t matter that we kept saying, “We heard it already, Grant. It’s not funny anymore.”

The other most common feature of Asperger’s is sensory issues. Kids with Asperger’s don’t have normal integrated sensory experiences. Instead, they experience the sensations around any given situation in a disjointed way. That makes some kids need to go further into certain sensations, while others need to withdraw from them. That’s part of why Grant can’t handle certain textures of food and why he strongly resists foods he’s not familiar with.

Scenes from the last seven years of my life kept fading in and out as I revisited them with newfound understanding. Suddenly I understood why Grant liked apples but vehemently hated applesauce. It also explained why he could never handle a lot of noise, and why he had such a hard time at ball games, always covering his ears and rocking until he could put himself to sleep. It was also why we couldn’t take him to concerts. We tried many times to go as a family to hear live music, but Grant would freak out every time, screaming,
“I want to go home, now!”
Grant also has big issues with touch. After reading what I did, I began to understand why he needed to touch everything—
everything
—wherever we were, and why he needed to slam his body into me. I have also since learned that he sleeps better at night when he has a special extraheavy blanket. The pressure helps to calm his nerves.

There’s also a tendency among Asperger’s kids to wander off and be fearless, regardless of the setting and safety concerns. For a long time I’ve known that when we go places, I need to have my attention locked in on Grant because if he suddenly sees a dog he wants to pet, he’ll just wander that way and get lost from us. (He has a crazy love for all animals, as do most kids with Asperger’s. Somehow, animals calm them.) A trick I’d begun practicing before the diagnosis was either to dress him in a really bright color or to put all the kids in the same shirt when we traveled. That way if he disappeared, I would
have no question about what he was wearing. Plus, other people would tend to take notice that the kids were dressed alike, which made it easier to get people to help me find him.