The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (23 page)

I can’t begin to explain how much I’ve learned about Grant and about myself in the years since his diagnosis. My marriage to Curt and my relationships with my other kids are stronger than ever thanks to Grant.
(Photograph by Passaretti Photography)

While this might have seemed like a reasonable solution, I had overlooked one crucial thing: the importance of Grant’s regular schedule. He had a very regimented routine in the morning, as was the case for the entire day. He gets up at 7:00, gets himself ready for school by doing things in a particular order, and then goes to the “early school” session, which is kind of like a big recess before class starts. The kids love “early school,” and Grant is usually there by 7:30.

Of course, it wasn’t that I totally forgot about the significance of Grant’s routine; as a parent you’re always making compromises in one way or another. That day I thought the right call would be to sacrifice his routine for sleep. I figured there was more to be gained that day in giving Grant extra sleep than in adhering to his rigid schedule. Boy was I wrong.

I let him sleep an extra thirty minutes, and then tried waking him. But he wouldn’t respond. He was that tired. After three failed attempts at getting him up, I decided his rest was more important than recess and let him sleep until 8:30. School was starting at 9:05.

When Grant woke up, the first thing that upset him was that there were different cartoons on television than he was used to. (Yes, even a shift in his cartoon lineup can lead to problems.) I was able to get him up and out, though, with a Star Wars Clone costume tucked into his backpack for the parade. But when we got to the school, instead of dropping him off out back as usual, I took him to the front. As I drove around to the entrance, Grant stiffened and started to yell.

“Where are you going?!”
he shouted.

“School starts in five minutes,” I said. “I can’t take you in back where all the buses are now. You’ll have to go in from here.”

He kept yelling,
“What?! What?!”
all the while smacking his hands on the seat. It was clear to me that he was trying to get stimulation from somewhere.

“Grant, this is where you’re going to go in today,” I explained again.
Suddenly tears were running down his face. I didn’t know what to do with myself. I wanted to jump out of the car and run away. I wasn’t expecting this, and I had no idea how to react. I knew I couldn’t do what I might have done in the past—yell,
“Grant, get out of the car!”
No, my son was distraught, and it wasn’t his fault. His schedule and his normal routine had been changed on him.

I remembered about rubbing his palm, and I took his hand and started to rub it. Slowly he settled down.

“We don’t have to go in until you’re ready,” I told him. It took ten minutes to get him relaxed. Each second, I was afraid he’d fall apart again. He was that fragile.

When he finally pulled himself together, I asked him, “What was the biggest problem for you here?”

“I’ve never gone to school at this time,” he said, “and I didn’t know what to do.”

My heart broke. That, in a nutshell, was what I was still struggling to understand about Asperger’s. As much progress as I’d made, I still wasn’t seeing the world through his eyes. Something as small as entering the building through a different door at a different time had caused him that much confusion and anxiety. What I naively thought would help him—letting him sleep late—had in fact messed him up. I was scared for him because I could feel his nerves and I had no idea what to do. I wanted someone to say to me, “Here is what you do in a situation like this.” But there is no onesizefitsall solution for these kinds of crises in Asperger’s kids. All I could do was take a deep breath and pray that whatever I said would be right.

Grant dried his eyes with his sleeves and told me he was ready. Mrs. Trikulous was a gem. I had called the school to let them know what was going on and that Grant might be late. Mrs. Trikulous came and met us at the library entrance and then walked him to class.

I wanted to cry when I got back into the car. I couldn’t believe what had
happened. My intentions had been so good. I had only been out of bed a few hours, and already I was drained. And now I had to go and find a costume. I needed to have an Indian costume when Grant got home. I couldn’t go through another event like this one.

Luckily I had planned to have lunch with a group of my girlfriends that day, and when I shared the story with them, like good friends and mothers, they all jumped into gear. One contributed feathers for a headdress. Another contributed face paint. Others offered jewelry, belts, shoes, and so on. By trickortreating time, I had the best little Indian costume you could ask for. We even temporarily dyed Grant’s hair black. He looked great. Thank goodness for my mom and friends. Grant had a great Halloween. He liked being an Indian so much, he wanted to do the same thing the next year, and he did. Which certainly made my life easier!

What I was starting to learn, and what would ultimately prove just as important a skill as any of the tactics that Christina and the school would eventually teach me, was how to be adaptable. Sure, it’s a parenting skill that I’d cultivated by dealing with my other kids, but Grant requires a level of adaptation that is far more intense. Simply put, adaptation is what has allowed me to parent my way through situations like Halloween 2008. It’s the only real defense against the unpredictability of life.

Apparently adaptation was also something that my mom was learning when it came to Grant. Grant was Jack in a production of
Jack and the Bean-stalk
at school, and it was very important to him that he make the character believable. He said he needed a brown poncho. He was very excited about being in this play, and also that they were videotaping it so he would have it for years to come.

I had a brown poncho and let him wear it on the day of the show. It went over beautifully, and Grant did a magnificent job. He knew all his lines and was totally comfortable and confident on stage. I felt so proud, watching him.

After the production, that poncho came home all balled up in his back
pack, and I decided to send it to the dry cleaners. Two days later, Grant said to me, “You’re not going to believe this, but the video recorder didn’t work, so they’re doing the play again tomorrow morning.” Which was great—except that now the poncho, his top prop, was at the dry cleaners and we wouldn’t be able to get it back in time.

He sobbed for at least an hour. I tried to come up with alternatives, searching the house for something else to use or to turn into a poncho. But Grant was beside himself. Curled up in the fetal position, he alternated between crying hysterically and staring off into space. I was seriously thinking this little prop hangup might keep him from participating in the play. He couldn’t figure out how he could do it without his poncho. He didn’t want to feel this way, but he couldn’t help himself. With any other kid you could say, “Pretend this is a brown poncho,” but for Grant this change in a minor detail was essentially crippling. I had no solutions for him. We were both stuck.

At just the right moment, my mother called. “Mom, have you got any material I can sew together—a sheet or something?” I asked.

“I’ll look,” she said. “I must have something. I’ll come right over.” About thirty minutes later, my mom showed up with some brown material. I took out my sewing machine and we got to work. We stood him up, sewed the arms, and cut a hole where his head would go. We purposely made the bottom jagged. Grant didn’t like it at first, but after twenty minutes of convincing, he agreed that this was a much better poncho.

Later, after Grant went to bed, I asked my mom, “Where did you get that material?” I was expecting her to say it was an extra linen from one of her many moves. But no.

“It was the curtain from our spare bedroom,” she said. She had torn a panel down just for Grant. Now
that
is a grandmother who understands Asperger’s.

And here’s the kicker: The teacher wound up running out of time the next
day, so she had to postpone the taping of the play until that Friday. However, we were headed for Puerto Rico that day. Shockingly, Grant was a good sport about this.

“It’s okay, Mom,” he said.

I still haven’t told my mom, though. I wonder how she’ll feel about losing her curtain, considering that the poncho never got used.

D
ESPITE ALL THE PROGRESS
I was making, I was still struggling on a daily basis—not with Grant but with me. I was having an incredibly hard time keeping myself together. Dealing with Grant could be exhausting, but this was about much more than his behavior. This was about me and my behavior. This was about asking for help.

Curt and I had been going to couples therapy for a couple of months and we were making tremendous progress. For the first time in ages it felt like we were listening to each other better and communicating in a way that was totally different. In addition, Curt could see what I was going through every day with Grant. He was starting to view everything with eyes unclouded by baseball or distance, and it began to have a remarkable impact on how he acted around Grant.

While those were all very positive developments, they did not change the way I felt emotionally. During that fateful summer of 2007, just before Grant was diagnosed, I halfkiddingly predicted that either one or both of us would soon wind up on meds. In November of 2007, the second half of that prophecy had come true. I’d called our family doctor, who is also the kids’ pediatrician, Dr. Shaughnessy, and told her I was ready for some help. I was tired of feeling angry and miserable so frequently. Too often I felt on the verge of ripping everyone’s heads off. I didn’t know whether my entrance into perimenopause might have played a role, but what did it matter? I was a wreck.

She prescribed Lexapro. I didn’t ask questions. I assumed it was an antianxiety drug, but for all I knew she could have been giving me jelly beans. I didn’t really care. As long as the pills offered just one bit of calming, I was ready to take them.

For so long, so many doctors—including Dr. Shaughnessy and going back to Dr. Rosenberger, who first diagnosed Grant’s Asperger’s—had recommended I get help. I kept mistaking their suggestions for insults, a sign they thought I was failing at my job of fulltime stayathome mom and wife—the only jobs I had. My response, when I wasn’t too offended to get an answer out, would be a very impatient “I don’t have time.”

The selfconsciousness that I’d always felt as the wife of a ballplayer stretched to new heights following Grant’s diagnosis. Though finding out the truth about Grant had been a huge relief when it came to the practical things and managing his behavior, it had torn me up internally. I was down on myself for all that was happening with the kids and their many diagnoses. I blamed myself for not noticing that Grant was really different and not getting him help sooner. I’d lie in bed at night unable to fall asleep because I couldn’t stop thinking about all the times I’d treated him completely the opposite of the way I was supposed to treat him. The times when I’d yelled, the times when I’d punished—now that I understood more about how he processed the world, those scenes haunted me on a nightly basis. Instead of happy memories of Grant’s childhood, the past seemed to hold only examples of my own parental ignorance.

While the medication helped me cope with all this, it did not solve everything. Over 2008, my intense scrutiny of myself had continued to snowball. I didn’t cut myself any slack for playing the role of both parents much of the time, and for so long without the help of babysitters or a nanny. If I admitted to myself and the world that this hectic life was getting to me, that I was sad, would it seem I was ungrateful? I feared that was the case, so I resorted to acting. I tried to look as happy as people expected the wife of a successful
professional athlete should look. My husband did something that millions of little boys dream of doing. We had plenty of money. I didn’t have to have a job. I had four beautiful kids. What did I have to complain about?

On top of all that, I kept measuring myself against other parents. I looked around at other people’s kids who were straightA students and/or great athletes and felt like I was a failure as a parent—a failure at my favorite job, the one I took the most pride in. I was convinced that only the people who had parenting down could produce kids who were on the honor roll and the all-star team, the ones who were great at music or art. I clearly didn’t have parenting down.

I thought about ways in which I had failed as a parent. In the summers, I took the kids to amusement parks, zoos, and on road trips instead of making them read and learn. Could that have messed them up? I wondered. I obsessed over this.

But worse than the comparisons I would make to other parents were the comparisons I made to my own mother. I knew that ideal I’d always held. I knew the kind of mother I’d wanted to be. And as I looked at the way my family was turning out, all I could see were my failings. My mother I was not.

I feared that the doctors who were telling me to get help knew my secret, that I was a lousy parent. In hindsight I realize that they were merely noticing how overwhelmed I was in my life, and how difficult it would be for anyone to handle the kinds of things I had dealt with for years—cancer, ADHD, anorexia, Asperger’s, all the while being apart from my husband so much of the year, which had its own emotional challenges.

In the end, it wasn’t anything specific that triggered my decision to seek therapy on my own. There was no rock bottom or eureka moment. Part of it was that the couples counseling with Curt had made me more comfortable with the idea of psychotherapy. Part of it was that I was just ready. But in September of 2008, I waved the white flag and finally called Dr. Shaughnessy for a referral to a psychotherapist.

“I need help,” I said, my voice cracking a bit as I tried to hold back tears. She recommended Dr. Weather. I started therapy in January 2009, and I continue to go to this day.

Looking back, I don’t know how I didn’t know this, but I was depressed. I had thought the Lexapro was an antianxiety medication, but it turned out to be for depression. It’s hard to believe I was unaware of it. I hid it from everyone, including me. I told myself that I never had time to be depressed, and that notion kept me busy and moving. I knew I was struggling with a lot, but I just kept smiling and trying to keep it a secret that I was really a mess inside. I convinced myself that I had it under control. For a long time I thought that if I admitted what was going on in my mind and asked for help, it would signal defeat for me. I had this idea that I had control over whether or not I got depressed, which couldn’t have been further from the truth.