The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (20 page)

Regardless of their effectiveness, these tips gave me back something I hadn’t had in a long time: control. The more strategic information I learned about dealing with Grant, the more I began to feel that it was possible to parent my way through Grant’s behavior. It wasn’t easy, and perhaps the hardest parts were the things that went against my natural instincts as a parent. Fighting off those parental reflexes was difficult but essential.

I just kept telling myself that Grant’s brain was wired differently, and in order for these tactics to work, I’d have to do some rewiring on myself.

eleven

Confessions of an Overloaded Mom

T
HOUGH THE TACTICS AND STRATEGIES
I’
VE DESCRIBED
changed the way I dealt with Grant, there was one thing they couldn’t help with: the unpredictability of life. As much as I tried to prepare Grant for everything, to get him ready, to give him the tools he needed to feel comfortable, there were some things I just could not control. It was a hard lesson to learn, and I have Halloween 2008 to thank for teaching it to me.

Being a very organized catalog and Web site shopper (who with four kids has time to do all their shopping in person?), I ordered everyone’s costumes weeks in advance. The catalogs arrived in August, so the kids had plenty of time to pick. I made sure the costumes were at the house early, and I hid them from the youngest kids, who would otherwise wear them every day, rendering them threadbare by the time Halloween rolled around. One by one, the packages were delivered to the house. Except for one. It felt like some horrible cosmic joke: Grant’s costume was the only one that never arrived.

He’d planned to be an American Indian. He’d been learning about Indians and Pilgrims in school, like most Massachusetts kids do each fall. There
is so much history here, and Grant was enthralled with what he was learning. He got completely pulled into the subject, learning everything he could, which inspired his choice of costume. So I went online and ordered it for him.

I waited and waited for it to arrive. The next thing I knew, it was the day before Halloween and Grant had no costume. In a panic I sent an email out to local moms I knew, asking whether anyone had a spare costume. As luck would have it, no one did.

So the night before Halloween, I found myself driving around looking for an Indian costume for Grant. I didn’t think I had much of a chance, but I tried. With a normal kid, I might have been able to switch gears and get him to agree to a different costume, saying, “Hey, this looks much cooler than an Indian costume!” But not a kid with Asperger’s. Not Grant. He was locked in on that, the way he locks in on so many other things. To make matters worse, the school parade was the next day.

Before bed that night, I made a bargain with Grant. “Grant,” I said, “if I have to make that costume myself, you will be an Indian.” He smiled. “But can you please wear something different for the parade? If the costume comes in the mail while you’re at school, I promise I’ll run it over to you. And I promise you’ll be trickortreating as an Indian.”

I could see the wheels turning in his head. He seemed totally stuck and distressed. It’s heartbreaking to see your kid in that state. Making this even more upsetting was that Halloween is one of Grant’s favorite holidays. He often gets so excited that he has trouble sleeping the night before. He might fall asleep, but then he’ll wake up way too early and not be able to fall back asleep.

Sure enough, I heard him padding around at 2:00
A.M.
Curt and I took turns getting out of bed to tell him to get back in, hoping he could log a few more hours of sleep. He’d only had five, and that wouldn’t be enough. At 6:30, when I was getting the older kids up, I found Grant in the living room, sitting on the couch. He was clearly exhausted. I told him to shut his eyes and I would wake him up when he had to leave.

Photographic Insert

This photo was taken at a crowded Chuck E. Cheese while we were still in Arizona. Grant was about two. Looking at this picture, I can vividly remember that the loud noise and commotion would cause him to shut down. Of course, back then I had no idea why.

Grant in 2001. Taking pictures of him was tough back then because if you asked him to smile, he would always say “No.”

Grant with his younger brother, Garrison, in 2003. This was the year I started to notice big behavioral changes in Grant but passed them off because there was a new baby in the house. Still, we wouldn’t have the official diagnosis of Asperger’s for years to come.

This shot was taken in 2003 on Take Your Dad to School Day at Grant’s preschool. Getting him to school that day was incredibly tough because it was a Saturday and he didn’t want to go. He never went to school on Saturdays.

News trucks were crowded outside our house during Thanksgiving, 2003, as we negotiated with the Red Sox about Curt coming to Boston.

The day our family entered Red Sox nation (with Red Sox general manager Theo Epstein on the left and Red Sox owner Larry Lucchino on the right).

Every season the MLB teams would have a family day when the players’ kids would get to play around at Fenway. This photo was taken during Family Day, 2004, our first season in Boston.

Curt with the kids in 2004 at the All-Star Game in Houston. It was the last All-Star Game he played in.
(Clockwise from top right)
Gehrig, Garrison, Grant, and Gabby.

Traveling with the kids during the season was always tough because it was usually just me or me and my mom with all four kids. Airport play places like this one were helpful, but the downside was that Grant couldn’t understand when I said we had to leave. Many times we almost missed our flight because I couldn’t get him to stop playing, he would not listen, or he would run from me.