The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (31 page)

Around that time, Grant told me that when he grew up, he wanted to be a policeman so he could always protect me. That melted my heart.

This sweetness and sensitivity toward others is something that I don’t think Grant will outgrow. It seems to be a part of who he is—Asperger’s or not. He likes to know that people he loves are taken care of, and he’s as attuned as ever to people who are in need. We now know that’s the reason Grant gravitates toward kids who have special needs, like William and Stephen. Stephen is Grant’s best friend these days. From one year to the next, the school keeps Stephen and Grant in the same class. Stephen has a special aide in class with him, and the aide keeps an eye on Grant, too.

Grant sometimes takes it upon himself to help Stephen out. One day, as school was ending, the aide told Stephen it was time to get up from circle time and go. Stephen either didn’t hear her or didn’t want to leave. After she’d said it a few times, Grant went over to Stephen and said, “Stephen, go get your bag. Go get your bag, then come back over and sit down. She has told you twice.”

The teacher, holding back her laughter, interrupted. “It’s okay, Grant,” she said. “I’ve got it.”

“No, I beg to differ,” Grant told the teacher in all seriousness. “He didn’t move until I told him to.”

It’s inspiring to witness Grant’s friendship with Stephen. It has had a positive effect on both of them. Grant gets to be very responsible, always keeping an eye out for his friend, and Stephen learns how to be more of a typical little boy. He emulates Grant—which can be both a good thing and a bad thing. Stephen learned to pee standing up from Grant, which might not seem like rocket science, but it is something that helps him feel more like everyone else.

Though Grant does very well in friendships with special needs kids like William and Stephen, he continues to have a harder time with kids who are
considered “normal,” and this remains a huge source of anxiety for me. As he gets older, this inability will become more and more of an issue, because Grant’s maturity in certain areas will be delayed. He is ahead of his years in terms of empathy and emotional insight, but he is very young in other ways.

Last year in third grade, he was into writing short stories in school. It was amazing, because he let his imagination fly and came up with some really great stories about castles and kings. At recess, he’d try to bring his stories to life outside. He’d say, “Okay, guys, so this is the castle,” and he’d point to something on the playground. He’d make a big elaborate plan, and the kids would wait for him to tell them what to do. Then they’d all play out the story that Grant had made up.

But in fourth grade, kids are not as into imagination games—although Grant still is. Now they don’t want to play like that. I feel sad that it’s becoming something that isn’t appropriate for him, because he really loves using his mind in that way. The larger concern is that he’ll still want to play like that as he gets older, and as a result he’ll further isolate himself socially. We don’t know, and no one can tell us for sure, when he’ll “catch up” socially. When he’s twentyfive, it won’t so much matter, but at eight, ten, and twelve, those differences can be enormous.

At the moment, though, these concerns are only in my mind. They make for one of the hardest parts of being Grant’s mom, though I am pleased to report that he was recently the star of the week at his school, which meant that each child had to write him a note. Almost all the kids wrote, “You are always nice to me.” It filled my heart!

At least for now, Grant doesn’t seem to care whether other kids think he’s cool, which is incredibly refreshing for a person like me who has spent far too much of her life being preoccupied with what other people think. Grant marches to the beat of his own drummer (and by the way, he has recently taken to playing the drums—a passion nurtured by my dad’s recent purchase
of the loudest set of drums on earth for him), regardless of the social consequences. This became especially obvious this year when he went to the fourth grade dance—his first dance ever.

I prepared him way in advance. All week I kept telling him, “You know what this Friday is, right? After drums and soccer practice, you have the fourth grade dance.”

He was so excited about the dance that he couldn’t eat. We were having ham slices and potatoes that night, and he loves those, but he just sat there in a daze, unable to put food in his mouth.

Curt said, “You are not going to the dance unless you eat,” and Grant was caught because he really wanted to go to the dance, but he was also too anxious to be able to eat. We negotiated with him and settled on a biscuit.

After dinner, he went upstairs to get ready. He’d already picked out his clothes—he knew just what he wanted to wear, which I thought was cute. After he changed, he came downstairs and said, “Mom, I have to talk to you.”

Uhoh. I couldn’t imagine what it was going to be about. A girl maybe? There was one he had his eye on. He really loved her and had for years. If Grant’s not in nerd mode, he has the potential to be a real lady’s man.

“I want to wear real sneakers, Mom,” he said. “I want to wear sneakers that tie.”

“Okay,” I said. Except he didn’t own any sneakers with laces. Because he can’t tie his shoelaces, we’ve never bought a pair of shoes with laces that aren’t soccer cleats. I’d long ago stopped worrying about the fashion statement of Velcro, but in this instance we were stuck. The best I could do was to grab a pair of Gabby’s basketball sneakers that fortunately didn’t look like girls’ shoes, but they were still too big for him. They were a size seven, and he is only a size four. However, he actually liked that because it meant he could slip in and out of them if he needed to, without having to retie anything.

We went over shoelace tying for a few minutes. After several tries, I
couldn’t believe it: He actually did it! There are some moments in your child’s life that you just know you’ll remember, not because they’re the most important, but because they feel that way. This was one of those moments for me.

I smiled at him as he ran out of the car to the dance that night. I didn’t care that Grant was wearing Gabby’s shoes, or that they were too big. I didn’t worry about whether he would embarrass himself, or whether other kids would make fun of his shoes, whether the teachers would judge me or whether other parents would wonder why I let him out of the house that night. All I cared about was that for the first time Grant had tied his shoes on his own.

Grant went to the dance and had a great time. He texted me from the dance and informed me: “I am never coming home.” I laughed and heaved a sigh of relief. When I went to pick him up afterward, he came bolting out.

The next Monday, when Christina came to work with us, we talked about the shoes. All night, at the dance, kids told Grant that his shoes were too big. But that didn’t seem to bother him at all.

“Grant doesn’t realize that other people might have different thoughts or opinions than he does on any given subject,” Christina said.

In his opinion, the shoes were perfect because they were laceups. That was all that mattered to him about them, and so that was all that mattered to me.

There’s no denying that I admire Grant for not paying other people’s opinions too much mind. It’s the opposite of what I have always done. In fact, I have let other people’s opinions keep me from doing things I really wanted and needed to do. Grant, though, wore the big shoes to the dance and was very proud of himself. Frequently I find myself thinking back to the time the girls in junior high made fun of me for wearing pants that were too short, and I’d spent the whole day hiding in the bathroom. I’d been “normal,” and there was nothing that could have protected me from those girls trying to make me feel “different.” Grant, on the other hand, is comfortable with himself. Nothing and no one can change that.

I
T’S AMAZING HOW MUCH
this experience with Grant has changed me. It has opened my eyes and my heart, it has loosened me up, it has shifted my priorities, and it is beginning to help me stop caring so much about what other people think of me.

As strange as it may sound, in every area of my life there are ways in which I have actually benefited from having a child with Asperger’s. I have become more patient with all the kids I encounter, not just at home but on the teams I coach. I’m taking sports less seriously, and that is making me a better coach. I have coached Gabby’s softball and basketball teams since she started playing, and I will admit that when I started coaching her in softball, I took it much more seriously than I should have or than she did. I was always a fun coach, but I was too serious about her doing well.

I remember that when Gabby was eight, she preferred to get hit with the softball rather than swing. Sometimes she’d let herself get struck out, never taking the bat off her shoulder. Once, after she did that, she came back to the dugout and I said, through gritted teeth, “If you strike out again and don’t take that bat off your shoulder, I am going to be so mad!”

Gabby looked me right in the eye. “Softball is fun, Mom,” she said, “and you’re taking the fun right out of it.” She was right, but it’s taken Grant to make me realize just how right she was.

Dealing with Grant has forced me to hold a mirror up to myself, and the view hasn’t always been flattering. It’s uncomfortable to admit this, but I realize now that before his diagnosis, I really didn’t like myself. I mean, I wasn’t a bad person and my heart was certainly in the right place when it came to my husband, our family, and the people around us, but I always worried too much about how I appeared to everyone watching our life from the sidelines. I was vain, rigid, and uptight. That drew me away from experiencing and appreciating the pure joy that life can bring.

Now I’m no longer afraid of a life I can’t predict or plan out. My kids can wear pajamas to the movies, costumes to the grocery store, or girls’ basketball shoes to a dance. Let people talk. What does it really matter? If I make them good kids who respect people, who cares what they’re wearing?

Grant doesn’t care what other people think—to a fault. That frees him up to live more genuinely. When Grant laughs, it’s an infectious laugh. When he cries, it’s out of genuine sadness. And when he loves, it’s without stipulations or fear. It’s true and deep. When he’s difficult, it’s not out of malice or disrespect. It’s simply a matter of his neurological inability to process certain kinds of information and a need for specific types of physical stimulation. And while my fears about Grant’s social awkwardness keep me up at night, I realize that there’s a lot I can learn from Grant about being true to my own opinions and needs.

Grant made me accountable in ways I hadn’t yet been. He forced me to face and understand people and things that used to leave me terribly uncomfortable. While having a child with Asperger’s is certainly a challenge, I realize that there will always be parents who are facing much greater tragedies. I spent all of Curt’s career meeting families who had lost loved ones and hearing the cries of parents of very sick children. Grant is healthy. All my kids are healthy. And now that I have this new perspective, I feel especially fortunate.

I have stopped comparing my kids to others the way society pressures you to. Now I celebrate my kids’ differences and the qualities that make them unique and special, rather than obsessing over ways in which they need to improve. Instead of waiting for my kids to do something that makes me feel as if I’m succeeding as a parent, I just have faith that I am. I hardly ever get mad at the kids anymore. I realize life is too short, and there are too many good things you might miss about your kids if you’re always fighting with them.

I have become more compassionate toward others. I no longer judge
when I come across people in sour moods, or parents having a hard time controlling their kids. I have been those persons at their wits’ end, I have been that parent, and I have that child.

No one has taught me more effectively than Grant that I can’t control everything in my world. After living in fear for so long about what might go wrong each day, now I wake up every morning excited about what the day may bring—good or bad. I’ve become more patient, and I’ve slowed down. I used to be so busy hurrying to the next stage in life that I never enjoyed the one I was in. Now, when I think that in eleven years I will no longer have kids at home, I get scared, and sad.

Above all, I realize now more than ever that I am a lucky woman. I have a beautiful family with four unique, happy kids, and a great—rejuvenated—marriage with my loving husband. Our year spent in therapy with Dr. Xavier proved to be a decision that may very well have saved our marriage. We learned how to talk and listen to each other. We remembered why we fell in love with each other in the first place. Therapy together was the best thing we could have done, for ourselves and our kids. I never imagined that I’d be more in love with my husband seventeen years into our marriage than when we first met, but I am.

Now I’m more happily married than I have ever been. There is so much love in the house that sometimes our kids are actually grossed out by it. We are friends again and now parents together. If people wonder why Curt retired from baseball and doesn’t miss it, just think about the last year of our lives and that’s pretty much the answer.

Grant and Curt continue to work things out. It’s not without its challenges, but the fact that they both have ADHD, and both have what I consider “nerd hobbies” means that their next intersection of common ground isn’t far off. Curt’s always played games that the boys go in and out of enjoying, so even though sports doesn’t appear to be on Grant’s future schedule, they’ll keep finding things to do together.

I’m not sure how I got here, but I’m smiling, and I’m writing—something I couldn’t do just two years ago, when I first received Grant’s diagnosis. As with any events in our lives that shake us up, it has taken me time to heal and to grieve over what I felt I lost. But having done that, I’m ready to get on a new path. It took a long time to reach this particular point, where I can be open about what’s going on with Grant—with myself and with others. It’s a journey that has only just begun.