The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (25 page)

We were under no illusions that things would be perfect after Curt’s retirement; lord knows that having Curt home during the summer of 2008 had eliminated those idealistic notions. But we did know that things would get better, not just because he was around but because for the first time in years we were listening to each other. And it was only by understanding each other better that we’d be able to truly help Grant.

A
T THE BEGINNING OF
2009, before Curt had made his formal decision to retire, both YouthCare and the Asperger’s Association of New England
were planning their big galas, both of which were to be held in the spring. Each asked if we would attend.

Despite everything that had happened since Grant’s diagnosis, I still had not spoken in public about Grant’s Asperger’s. It had taken me over a year to really open up about it—to myself and to others—but the experience with YouthCare camp had changed all that. It gave me the peace of mind and confidence that I needed to speak publicly about Asperger’s. YouthCare had made me feel positive about Grant’s future for the first time since his diagnosis. Whereas for so long I had struggled to envision what his future might look like, that summer, as I learned new ways to connect with Grant and build a more positive relationship, I also learned new ways of understanding how he would grow. This was all part of a long, ongoing journey, but at least now we were on the right path.

This newfound optimism made me feel as though I could finally begin to open up about what Curt and I had been through with Grant. So when both YouthCare and the AANE approached me, they managed to catch me at just the right time.

Becoming an advocate for Asperger’s was something that had occurred to me before, but for a long time it was a role I was hesitant to take on. From my work with ALS and the SHADE Foundation, I had a sense of what being publicly associated with a cause would require both from me and from my family. Whereas both ALS and the SHADE Foundation were about my feelings, my experiences, and my desire to help, Asperger’s was not as simple. This wasn’t about just me; this was about Grant. Even if I’d been ready to talk about this right away (which I wasn’t), there was no way I was going to risk talking in public about something my son was going through until I was certain that he understood this himself. In short, I needed to go through this as a normal mother, not as the wife of a famous baseball player.

However, my mind kept drifting back to that overwhelming sense of isolation I’d felt in the beginning. For so long I’d struggled on my own, keeping
much of my fear and confusion bottled up. The more I thought about it, the more I came around to the realization that it was better for those of us struggling with this to be open with each other about it and to help other people become aware. There was comfort in community, and there were also strategies to be shared. Moreover, if I could help raise money so that other people could benefit from the kinds of services that were making such a difference in Grant’s life and mine, then I wanted to take part in that.

I had come to feel tremendous gratitude for both the Asperger’s Association and YouthCare. They were helping our family—and while things weren’t quite running smoothly just yet, they were already more peaceful. In addition to the tips and information the Asperger’s Association had provided, we also understood that there were people we could speak to about this, people who spoke from their own experience, who’d helped quell the sense of aloneness and the fears around having a child with these particular perplexing differences. Meanwhile, YouthCare was heavensent in its own way, a place where these kids with huge social issues could go and experience summer camp while learning strategies to help them not only now but later in life.

So when both organizations asked us to come, we really didn’t have to think twice. We gladly marked the dates on our calendars. The more we thought about it, the more we realized how important it was to both of us that money be raised so that many more kids would be able to benefit from important, helpful programs. We decided to become cochairs for both events. One of my crazy faults is that I don’t like to just put my name on things. Some people might look at that as an issue with control, but it also means that if an event has my name on it and it doesn’t go well, I have only myself to blame. Still, it felt good to be part of these events. While I’d done plenty of charity work before, now that my son and our family were recipients of these organizations’ services, I understood for the first time just how important it was to make them more available.

Being cochair comes with a set of responsibilities such as helping to get
auction items, finding sponsors, and inviting guests, and after a few meetings in preparation for the events, it occurred to me that I should talk about Grant and what he’d been going through. It seemed funny to me that my mind went there, because one of my initial apprehensions about hosting these events was that I would be called upon to talk about Grant, and I didn’t know whether I should or could.

It wasn’t a decision I could make on my own. I spoke to Curt and Grant first to see how they felt about it. I knew that Grant understood about his Asperger’s and that it was what made him a little bit different. As he told a fellow camper who was having problems one day, “Hey, do you know why we’re here? We both have some things to work on.” (Leave it to Grant to come up with the two sentences that pretty much sum everything up.)

Both Curt and Grant said that, yes, I could talk about Grant, so I committed myself to the speech, as hard as that was. Even though our friends knew that Grant had Asperger’s, it would be the first time we would talk publicly. For some reason I had the feeling that if I said the words out loud, I would finally be okay with admitting that things in our house were different, and that was okay.

A few days before the event, I sat down in front of the computer, and the words just came to me. I had been holding in so many emotions, and they just poured out. I had wanted to write about it before, but couldn’t. I vividly remember sitting down and trying just after the diagnosis, but I was too numb, and my arms felt too heavy to write. I had way too much sadness to be able to think straight. This time, though, I could write about where I was back then. About how far I felt I’d come in a year and half. About what it was like to be in a place where I was so overwhelmed, so frustrated, so confused, so afraid, that when I sat down at the computer, all I could do was stare at the computer cursor as it blinked on the white background. Now I could write about how, when I finally opened my eyes to this experience, life became much sweeter—how I can finally see the light, and it is beautiful.

It felt so good to write. I knew that I would be reaching people who were experiencing the kind of pain I had been through months before, when Grant was diagnosed. After I write a speech, my wonderful husband usually reads it, rereads it, and then adds to it. (I swear, he could have a second career as a writer or editor. He has a magical way with the English language.) I knew not to practice it out loud. I had learned from prior experiences that such emotionally potent material had to be read aloud for the first time in its intended arena. Not to mention that I wouldn’t have been able to get through it without crying. The speech was emotional, funny, and thankful. When you speak from the heart you can never go wrong.

The YouthCare event came first. Many of the guests had no prior connection to Asperger’s, but even so the event was beautiful and ran magnificently. When I gave my speech, I could feel the whole room respond. People were really moved, and they laughed in all the right spots, too, which made me feel good. As predicted, I wasn’t able to get through it without crying, but I don’t think anyone minded.

Curt spoke after me. He is very good off the cuff, or at least he was until he started explaining how funny some of Grant’s behavior can be.

“My wife, Shonda, farted in a mall,” he began. Immediately I wanted to die. “Grant turned to her and yelled,
‘Hey, Mom, you farted!’
Most kids know better than to do that, but not kids with Asperger’s.”

I could have killed him. Although people appreciated having an opportunity to laugh. Looking back on it now, it is not so much the embarrassment that I remember, it’s how perfect that story was. Sometimes I’ll be going through things with Grant, and he will do something that so perfectly sums up what it means to have Asperger’s that all I can do is laugh. The cause behind the event was a subject that was heavy, but this was a party.

At the end of the night, I noted how good and therapeutic it had felt to talk publicly about Grant’s Asperger’s. Our friends were supportive and let us know they were proud of us that night. They had also been on this journey
with us, but that night I let them in more than ever before. You really don’t ever know what’s going on inside someone else’s house.

I was set to give the next speech just ten days later, at the Asperger’s Association event. The words were sort of the same, but the audience was different. This was an audience filled with people directly affected by Asperger’s—either themselves or their children. In my speech, I talked about the struggles, the battles, how it was a different life than I had ever expected, but now the only life I would want. I almost got to the end of that one without crying, but then I started choking up.

Curt followed me again, this time with a Top Ten list: The Top Ten things you learn or experience with an Asperger’s child:

• 10. It is humanly possible to say “Stop” four hundred times in a ten-second time frame.
  
• 9. You know the exact time you will be exhausted every day: within fifteen seconds of waking up your child with Asperger’s.
  
• 8. At fifteen your Asperger’s child will likely have an IQ twice as high as yours and let you know exactly when and how you were wrong every day.
  
• 7. Everyone at the grocery store, swimming pool, or other public gathering place knows your child’s name, even if you didn’t tell anyone.
  
• 6. Be prepared to never have the last word in any conversation ever.
  
• 5. Pray that if they have any nervous tics or habits, they don’t include picking their nose.
  
• 4. Be prepared to be presented with more information than any human has the right to know about Legos, Star Wars, bulldogs, Bakugan, Pokémon, dinosaurs, YuGiOh!, World of Warcraft, Webkinz, the human skin, bowel movements, and body hair—and hope your child only picks one.
  
• 3. Do not fart in public if you don’t want everyone within earshot to know who, where, and what just happened.
  
• 2. Get ready for serious doses of unconditional love. The heart of an Asperger’s child is not bound by society’s norms, not limited to lessons we were told or taught, not confused or embarrassed by anything the heart emits. Theirs is a brand of unconditional love we should all pray at night to be exposed to, or to be able to extend ourselves.
  
• 1. Be prepared to go further than you dreamed, work harder than you thought possible, to love, and to cry, but at the end of the day wrap your arms around a true gift from God.
  

Once again it brought muchneeded humor to the occasion, but as Curt spoke I noticed something else about him. Usually Curt and I hold hands when the other is speaking. It may seem silly, but it’s our way of making each other feel supported and not alone with a little hand squeeze. As I listened to Curt give the speech, I noticed that he was becoming emotional.

This was one of the first times I’d seen him really react to Grant’s situation and witnessed just how much this diagnosis had meant to him. Through everything—my therapy, our therapy, retirement—I’d spent a lot of time thinking about how my experience with Grant had changed me, but suddenly, at this incredibly public event, I was reminded of how much Curt’s feelings had been affected. Watching him up there in front of the crowd, I saw that he, too, had struggled with his sense of himself as a parent. After all, this was the same man who’d idolized and revered his father—who’d put his father on a pedestal in the same way that I’d done with my mother. Just as Grant had forced me to look at myself in the mirror, he’d forced Curt to do the same. Curt is the most intense competitor I’ve ever known, and feeling like he doesn’t measure up is not an emotion that he wears easily.

And yet here he was speaking candidly about Grant in this new life that
we were living with baseball behind him. In a flash everything became dramatically real. Curt wouldn’t be leaving for weeks at a time for much of the year anymore. He would see more and more how Grant reacted at home. This was his new reality, and telling the world about it made it really his.

What I didn’t expect from the night was to have so many people thanking us for speaking. They told us that hearing our story was like listening to their own. As I was walking out the door, a woman was waiting to speak to me. She was young and tearyeyed. She was trying to say thankyou to me, but you could see that she was very fragile emotionally. It didn’t take much for me to realize that this woman was where I’d been a year before. She felt alone, scared, and surrounded by people who didn’t understand that Asperger’s wasn’t merely an excuse for bad behavior. She needed to know that she was not alone, that things would be okay, and that her child would have a prosperous future and friends. I listened to her fears and anxiety, and as her words slowed down, I found myself reaching to hug her, and saying the words that I had been unable to say to myself until a few months earlier: “Everything will be okay.”

I
N SPRING 2009 THE
baseball season began, but now Curt was facing it in an entirely new way: as a Little League coach. For the first time, having just retired, Curt would have a chance to coach a kids’ team.

I was curious about what kind of team he would put together, since he really didn’t know the kids. His baseball season had always been during the kids’ baseball and softball season, and that left very few games for him to attend. He and the other coaches had their “draft,” and when he came home afterward, I asked to see his roster. I wanted to know the team had been assembled fairly. Some parentcoaches strategize about how to get the best team every year. I worried about what kind of team Curt would get, not knowing any of the kids.