The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (12 page)

During each practice, I would talk on the phone to Curt, who was usually at the Red Sox clubhouse getting ready for a game.

“I don’t think this is a good idea,” I told him over and over. “For some reason, this isn’t working.”

“No, this is
exactly
what he needs,” Curt said. Of course, Curt wasn’t sitting there for two hours every night just praying that this night was going to be easier than the last one.

I kept taking Grant to Pop Warner football, but things didn’t get any better. As they moved into working on specific football plays, Grant wouldn’t follow directions. He wouldn’t listen, and he wouldn’t look where he needed to, especially if someone was trying to make eye contact with him.

So there we were, night after night. More and more often, Grant would get knocked down and then not move from the field. I started to notice that the other parents were getting frustrated. The coaches were finding it very difficult to keep him focused during the games. While he was there, he’d do annoying things like throw his helmet or squirt the other kids with water or, always inappropriately, try to be funny. The kids didn’t think it was funny, and neither did the parents, who took Pop Warner football very seriously.

I thought I had a solution: I’d get Curt involved with Grant. “Curt, go throw a football with Grant,” I suggested. “Maybe if you show some interest, it’ll start to click for him.” I also hoped this would help the two of them connect. I hoped that maybe football would become their thing together.

So one afternoon when Curt was back home for a few days, he went outside with Grant and the football. And I swear, Curt was not out there ten minutes before he walked back in, looking really frustrated.

“He’s not processing anything,” Curt said.

“What do you mean, ‘He’s not processing anything’?”
I yelled. I was annoyed at Curt for coming right back in. I felt like he hadn’t given it enough effort, and I didn’t understand how he could so quickly throw up his hands.

“I mean that he’s not processing anything that I’m saying,” Curt explained. “He’s not getting any of it.”

There was something about what he said—the word
processing,
in particular—it seemed to make sense. Grant couldn’t process social cues, he couldn’t process when the joke was over, he clearly couldn’t process facial expressions, he didn’t process instructions by camp counselors or other figures of authority, he didn’t process what was socially acceptable and what was not. I instantly went over to the computer and started Googling.

I put in the words
not processing information,
and all these links came up about autism. But that made no sense to me. I knew kids with autism, and Grant didn’t seem autistic. Before I knew it, I’d been reading online for an hour, and I wasn’t sure what it meant.

Fortunately, back in May, I’d made that appointment for Grant to see a neurologist because his school thought he might have ADHD. Judging from some aspects of Grant’s behavior, ADHD seemed like a logical diagnosis. He never sat still. He was more hyperactive and easily distracted than any of the others. As a friend once said to me, “Did you ever notice that Grant doesn’t walk into any room? He runs, jumps, hops, and swings from lamps before slamming into you to stop.” If that didn’t seem to fit the bill for ADHD, then I didn’t know what would.

The appointment was one week away. I used that time to brace myself to ask the doctor a question I wasn’t sure I wanted the answer to: Could Grant be autistic?

seven

The Missing Piece

B
EFORE THE WORD AUTISM POPPED UP ON THE SCREEN
, I’
D ALREADY
skipped the formal diagnosis and gone straight to what my heart and my head were telling me: Grant had ADHD. ADHD just seemed to be in the air in our house.

All that changed after I typed the words
not processing information
into Google. Let me tell you, a little bit of information about something like autism can be a bad thing. And all the things people write online about their horrible experiences can be very dangerous to a nervous mother who’s trying to figure out how to do the right thing for her son.

In truth, I had begun to doubt my unprofessional ADHD diagnosis for Grant three weeks prior to the appointment with the neurologist, when he had to undergo three hours of testing—written and verbal tests. After the three hours were up, Grant came out of the office with the woman who had administered the tests. She looked as if she’d just gone fifteen rounds with Muhammad Ali.

“Grant tried to negotiate every single thing that I asked him to do,” she said.

“Everything?” I asked, cringing.

“Every single thing,” she replied in a tryingtobenice voice, but clearly exhausted. “He’d say, ‘I will only read this paragraph if I can lay on the couch with my feet up in the air.’ He fought me on every request. This is by far the hardest I have had to work to get these tests completed with any patient.”

The day of the neurologist’s appointment, Curt was away, so I had to take Grant on my own. My father came along to drive me, because I’d had foot surgery and wasn’t healing well. (I think that may have been God’s way of protecting me: not letting me be alone, making sure I had moral support.)

The neurologist, Dr. Rosenberger, brought me, alone, into his office. The first piece of news was no surprise at all: Grant did in fact have ADHD. The doctor would prescribe Adderall. But there was more.

“Grant is on the autistic spectrum,” he said. He then drew a scale for me that showed lowfunctioning autism at one end and highfunctioning at the other. “Grant is at the highfunctioning end of this.”

I was looking at this thing, and hearing the doctor talk, but not really. I suddenly felt like I was in a tunnel, and I just kept thinking to myself,
Try to focus and process what he’s saying.
I was having a hard time, though. The word
autism
had not really been in my vocabulary. It was always something other parents’ children had, and I had been hoping against hope that all my Googling had brought up the wrong results. But now there was this doctor in front of me saying my son had it, which made this all too real. Even though it made so much sense, I did not want to hear what the doctor was saying. Tears started pouring from my eyes before I could realize that I was crying.

When I stepped out of the doctor’s office and met Grant and my dad in the waiting room, it was very obvious that I had been crying. I stopped for a few minutes, but then the tears were streaming again. Grant reached for my hand and held it, trying to comfort me. I didn’t say anything to him about what had just happened. He was seven years old. What was I going to tell
him? How was it that I was just learning my sevenyearold child was autistic? Wasn’t that something I should have known, or been told, years ago? In an odd way, you’d think I would want to just hug him, yet I actually felt the opposite. I couldn’t hug. My arms suddenly felt like I couldn’t lift them. I just kept turning over the same words in my head: How am I going to tell him?

And then how was I going to tell Curt? Of course, he wasn’t just off at an office somewhere, he was on the road pitching for the Red Sox. I couldn’t think. I was completely numb. I couldn’t really communicate. Everything was changing in that moment, and in the moments when I became fully conscious, my heart was heavy and aching. It was the biggest heartache I had ever felt in my life.

When I got home, I told the babysitter and I told my mother. And I cried every time I said the word
autism
. I didn’t call Curt. I couldn’t tell him on the phone. I needed to tell him in person. I needed to see the reaction on his face. I’d see him that night. Every year I made a trip with one of the kids to see their dad at an away game, and it just so happened that this annual trip would be tonight. This time it was Garrison’s turn. Once I got there, I’d tell Curt.

In the hours before I saw him, I was nervous about telling him what I’d learned from the neurologist. Part of me suspected that he wouldn’t believe it—he’d think the diagnosis was wrong. In the past, when I’d talked about aspects of Grant’s behavior, Curt either didn’t see it or didn’t understand it.

When we got to the hotel, Curt took one look at me and knew something was up.

“I can tell something is wrong,” he said. “What is it?”

“I need to talk to you,” I said.

“Tell me,” he begged.

I took a deep breath and looked Curt in the eye. “Grant has autism spectrum disorder,” I said.

Curt looked at me and nodded his head. Then he said, “That makes so much sense.”

I couldn’t believe how easy that was. It seemed too easy. My feelings were mixed. I was relieved that Curt got it, that he didn’t argue with me. I couldn’t have argued with him then, I was too emotionally raw. But it also felt anticlimactic. Here I had been on this threeyear journey of discovering Grant’s differences since he was about four, and it had been this huge struggle, a struggle I’d been fighting with Curt about, trying to get him to see. And then all I had to do was say the words, tell him what the neurologist said, and like that, he accepted it. In a way I felt angry that Curt hadn’t gone through everything I had to get to that place of knowing and understanding, that I’d had to do it all on my own.

While telling Curt did bring a huge wave of relief, it also cleared the way for me to go to a new well of anxiety, a place where, because I didn’t know much about autism, I began to envision all the horrible futures Grant might have in store for him. What would it mean for him as he got older? Would he be able to function and socialize? Would he make friends? My mind irrationally moved from one tragic image to the next as I focused on what Grant wouldn’t be and what he had lost. I pictured him with no friends, not being able to get along in the world or hold a job someday. I pictured him totally alone.

“We’ll get through this, Shonda,” Curt said as he held me. “We can get through anything.”

We’d made a pact when we first got married: No matter how bad things ever got, neither one of us could leave. We’d need each other to get through this.

When the tears subsided they were replaced with visions of the past, visions I had to come to terms with. Every time I’d run out of patience with Grant, all the yelling, the punishing, the feelings of frustration, the anger—he’d endured all of this, although he’d never done anything intentionally to deserve it. He wasn’t ignoring me when I yelled; he just wasn’t processing what I’d said. So from sadness I shifted into guilt. It’s the guilt that all par
ents feel no matter what their kids are like, only magnified through the lens of this diagnosis that gave shape and definition to his actions. Suddenly his behavior was explainable, while mine was not. How confused Grant must have been. How lost. How could I, his mother, the person who was supposed to love him above all else, have failed him so completely?

Sitting there with Curt, turning over the last seven years of my life, I was struck by the overwhelming and profound realization that every parent has had at one time or another: There is no such thing as a perfect child. Growing up, imagining my life as a mother, of course I envisioned my children as perfect. My mother had me walk a chalk line. I was taught by the best. Then, when I met Curt, it raised the bar even higher. Some people might not expect genius from a baseball player, but Curt is a very intelligent and wellread man, a serious bookworm who plows through volume after volume of history, especially of World War II. He’s also a total computer geek and into complicated board games that I can’t even begin to understand. So not only did I imagine that our kids would be natural athletes; they’d also be brilliant.

And yet despite my visions of perfection, I was shocked to learn that while my kids were all great in their own ways, not one of them was a star student or a serious athlete, which could be awkward when they showed up on a playing field and the other parents expected them to be outstanding because of their last name.

Though it’s one thing to make peace with your kids not being academically or athletically exceptional and realize how they are each special in their own ways, it’s another thing entirely to come to terms with one of your children being significantly different. This is every parent’s worst nightmare, that their child will be labeled different in some way, whether it’s a physical disability, social awkwardness, or coming from the wrong side of the tracks. The child who is different stands out and faces huge social and emotional consequences. The other kids notice who is different. Just the word
different
seems to be a bad thing, carrying all sorts of assumptions and stigmas.
Different
means hardship,
different
means struggle. It may seem like a reductive way of looking at the world, but as pretty much any parent will tell you, children can be incredibly cruel, and nothing attracts that cruelty like a kid who is labeled
different.

As I turned over the word
different
in my head, I found myself thinking of junior high. Throughout my elementary years, I had been in school with only kids from my neighborhood, Dundalk. Nobody in Dundalk had a lot. We all got by, but nobody was anywhere near well off. Then, in junior high, we were put together with kids from all over the area in a school outside our neighborhood. This new diversity meant that there were now kids with more money. I lived in a row house, and they lived in individual houses. I was made very aware of that difference, among others.

It didn’t have an impact on me, though, until a big student council event I took part in during seventh grade. I dressed up for our big district meeting. Since I didn’t have anything too special to wear in my own closet, I borrowed some clothes from my mom. I felt very puttogether when I left the house that morning, and I couldn’t wait to get to school and go to that meeting.

When I got there, though, I encountered a group of wealthier girls, gathered together and wearing the latest designer jeans.