The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (17 page)

Dinner became more of a nightmare than ever before. Between Grant not wanting to eat certain foods and Gehrig not eating anything, I was defeated before I got to the table. Besides, how could I enforce dinner rules for Gabby and Garrison if I couldn’t make the others eat?

C
URT RETURNED HOME FROM
spring training, and before I knew it the 2008 season had begun. I think the people of New England love opening day so much because they know it means that spring is here and the cold, snowy winter is coming to an end. But for me, as the baseball season started, I felt like I was a bomb waiting to go off. All I needed was the spark.

I knew something was wrong, and my feeling got stronger and stronger.
I never thought for one second,
He’s a boy and this doesn’t happen with boys.
I knew something was going on. I kept talking to people about it—my friends, my parents, Curt, doctors. The only person who seemed to understand what I was saying was my mom. Meanwhile, Curt continued to think that nothing was wrong, which just infuriated me more.

On top of all the kids’ issues, Curt was feuding with the Red Sox over an injury he’d sustained during the 2007 season. As he had in past offseasons, Curt ramped up his throwing and exercising, starting in just before the new year began. One day in early 2008, he came home from one of his workouts and told me that his shoulder hurt. Of course, as soon as the Red Sox found out, they were furious.

Curt went for Xrays and an MRI on the shoulder. The Red Sox didn’t believe there was any kind of a tear, in contrast to the opinion of Dr. Craig Morgan, the surgeon who had performed careersaving surgeries on Curt’s shoulder in 1995 and 1999. That’s when the disagreement with management started. Curt knew there was something seriously wrong with his shoulder and thought he needed surgery. He brought the films to a few different doctors for other opinions, but none of them could see anything on them either. As the 2008 season inched closer, the Red Sox decided that Curt would rehab the arm until midseason and then see what the doctor’s prognosis was. They were hoping physical therapy would do the trick. Curt knew it wouldn’t.

“I know my arm,” he argued, “and I’m telling you that if you let me have surgery now, I can pitch toward the end of the season, and the season won’t be lost.”

But the Red Sox physicians didn’t agree. Curt had to be at the ballpark every day to maintain their rehab schedule.

In late April the Red Sox were playing the Orioles in Baltimore and I flew down for the night. I was giving a speech in Baltimore about sun safety, and it was a great chance for Curt and me to spend a night together alone. Life as a couple had been getting away from us. We were living two completely sepa
rate lives under the same roof—when Curt was home. When he was away, we didn’t even have the roof in common.

We needed some time alone. Plus, I hadn’t been to as many games lately. For the first ten years of our marriage, I went to just about every home game, and not just the ones he pitched in. I was heavily vested in the teams and being a baseball wife. I always believed the wives were their own team, and the importance of being at games my husband didn’t pitch in was something he imparted to me from the outset, and something I was proud to do. But with our increasingly complicated home life, I hadn’t been going nearly as much this season.

At the same time, Curt’s work required so much that we got very little of him. He had to leave every other week. When he was home, he was out cold when the kids left for school because he was still recovering from getting home late after a game. Then he had to leave for the ballpark at one in the afternoon, before the kids got home from school.

It got to the point where living fortyfive minutes from Fenway became a blessing. That was our alonetogether time each day. I got fortyfive minutes to catch him up on four children. That took about forty minutes, and left about five for a catchup on us. But we had gotten to a place where each of us felt unappreciated by the other for all we did, and it was not fun. Given our competitive natures, it was easy for our conversations to quickly descend into arguments. Someone was on the offense, someone was on the defense, and neither of us gave any ground. The conversations couldn’t go anywhere. I think this happens to a lot of couples who are married for a long time, who have stopped really talking.

My side of our phone conversations became tenminute updates on the house, the kids, and me. At the end of each report, I dared him to question me for my choices and actions. If he did, he was insulting my way of handling motherhood.

Sometimes I’d only call him late at night, or not at all if I was busy. I’d
give him the rundown on what was happening with the kids, who wasn’t behaving, and how tired and frustrated I was. The problem was, I was talking to someone who was at his wits’ end as well. He was frustrated that the team had forced him down a path he knew would get in the way of his ever pitching again. He wanted our calls at night to provide him with a chance to unwind and smile. Instead, he was getting a litany of complaints.

“Why are you calling me with all this bad stuff that I can’t do anything about from here?” he asked one night.

“Because I need you to help me with this,” I said. “I need your help instilling some discipline around here.”

“I hear you,” he said, “but I’m not coming home after a tenday road trip, having only talked to the kids five times, and punishing them. That’s what you need to do.”

That set me off. Curt wanted to hear that everything was fine. But there I was dealing with Grant’s Asperger’s, everyone’s ADHD, and Gehrig’s eating issues all by myself. It left me feeling as if I would always have to face our kids’ major issues alone.

Needless to say, our minihoneymoon in Baltimore was not long enough. In what felt like an instant, we were heading back to reality. As we were getting on the plane to come home, Marlyn, my second set of hands with the kids, called us and said that Gehrig had asked for hamburgers for dinner—and then flushed his down the toilet. The toilet clogged.

That was the spark that set off the time bomb I’d become. “That’s
it
!” I said to Curt. “Something is
wrong
! I know it.”

I had her put Gehrig on the phone, and I yelled at him.
“I want answers!”
I screamed.
“Why would you throw your dinner away like that?!”
He couldn’t give me answers. He didn’t seem to know what to say.

After I hung up with Gehrig, as I was getting on the plane, I called the doctor to make an appointment.

At her office, I filled her in on what had happened since I last spoke to
her. “I know something is wrong,” I told her. “At this point, I don’t want to fight with Curt about this.”

She looked me in the eye. “It’s time for you to be the mother, Shonda!” she said. “Just take control of the situation.”

Wow. It sounded so simple, but it hit me like a thunderclap. I needed that smack on the head. It was humiliating that she had to say it to me, but inspiring as well. Apparently I was doubting my instincts as much as everyone else was. Not anymore. I scheduled another appointment for the following day, and made sure that Curt could go. I knew the only way he would understand was if someone other than me said the words.

The appointment was on a Friday afternoon. I reminded Curt by email and by phone. Two hours before the meeting he called to tell me he couldn’t make it.

“Fine,” I said. “But don’t you dare question me or secondguess anything I tell you after the meeting.”

Fuming, I picked Gehrig up from school and took him to the doctor’s office. Curt was there in the waiting room. We walked in not really speaking to one another. The doctor took Gehrig into the examining room and weighed him. He was seventyeight pounds and thirteen years old. He had lost two pounds since the summer. My fear was confirmed.

The doctor referred us to an eating disorders specialist. When we arrived at his office, the specialist sat us down. “If Gehrig loses one more pound, we’ll have to admit him to the hospital,” he said. “He’ll have to be hooked up to a feeding tube through his nose.”

That thought alone was enough to get Gehrig to eat a little bit. That and the knowledge that he was actually stunting his growth. He wanted to be taller! But he clearly needed more than just that nudge. He needed serious help. He was placed in an intense outpatient program for kids with eating disorders. He would spend three hours a night there, three days a week.

And so would Curt and I. Another subject I didn’t want to become edu
cated on. The saving grace in all of this was that Curt finally got his much-needed shoulder surgery. In June, after a few months of Curt telling the Red Sox over and over that his shoulder wasn’t getting better, they let him have surgery. When they opened him up, they found that his bicep was actually torn, as he’d been claiming since January. Curt’s baseball season was officially over. We would face this one together.

A
S HARD AS THINGS
were with Gehrig, the summer had been one of education for me. I was still learning about Asperger’s and trying to implement whatever I could to help Grant—and me—enjoy life on a daytoday basis. Something as simple as a wall calendar would light him up. He needed structure. He really loved school, and I think the schedule and structure of it were what appealed to him. He loved it so much that he attended “early school,” a recess session before classes, for the entire year! In a house full of kids who despised school, I had Grant waking himself up early in order to get to early school every day. That meant he would arrive at 7:30
A.M.
, even though school didn’t officially start until 9.

I was incredibly excited about Grant starting his camp, and I shared my excitement about YouthCare with him. I had been told that Asperger’s kids do much better in situations where they know what to expect, so I had many conversations with Grant about what he’d find at YouthCare—the swimming, canoeing, tree climbing, hiking, and more. He was excited, too.

We went to orientation several days before the camp started. There we were greeted by a lot of people. Each group would have six kids and two camp leaders. My first thought was,
God bless these people.
I always felt exhausted after one day with Grant; I couldn’t even fathom five days a week for eight weeks straight with a whole camp full of Grants. The camp personnel explained how their day would go, how dropoff and pickup would take place,
and handed us some papers and lists of things the kids would need for the next eight weeks. Grant was looking forward to getting his camp gear together. He didn’t think twice about the fact that he wasn’t going to the same camp as his siblings.

The first day came, and Grant was up early. We arrived and waited near the front in the line of cars. Grant’s camp counselor came out and greeted him.

“Hey, Grant,” he said after I rolled down the window. “You ready for camp?”

“Yes!” Grant exclaimed, and then bounded out of the car. He didn’t even kiss me goodbye. I listened as each counselor he passed chirped, “Good morning, Grant!” They greeted all the kids this way. They already knew all the kids by name.

I waited until he was well on his way, and then drove out of the camp-ground. Not even a mile past the exit, I had to pull over. Without warning tears came streaming down my face, only they were tears of joy. I felt as if, for the first time, I’d finally made a good decision for Grant. He was happy and he was safe, and they wanted him. I let out a sigh of relief that was unlike any I’d known—either before or since. In that moment, I knew that I’d done the right thing as his mother.

As I got the hang of Grant’s daytoday routine, I soon learned that what happened at camp didn’t just stay there. The people involved were interested in utilizing each kid’s experiences to aid parents in helping their kids at home. For example, right from the start of the summer, I received daily notes, sent home with Grant, about what he was working on there. The notes were designed to give the kids goals and to let their parents see their progress. For the most part the notes were encouraging and upbeat. The kids were trying, and for that, they were always praised. I later learned that the staff deliberately use “strengthbased” language, with a ratio of at least eight compliments per criticism, to help build a child’s confidence. Sometimes the note would
say something like “Grant had trouble with transitions today,” but it wasn’t an admonishment, just something to make him, and us, aware of where he needed more work. These daily notes were crucial for me because they often contained little tips that could immediately be introduced into our home in a way that would elicit positive responses from Grant.

If your behavior was good and you really tried to meet your goals, twice during the summer you were invited for an overnight at the campsite. A couple of times during the summer the parents were invited to a conference. Here the counselors would share the strategies that worked and talk about the ones that didn’t work so well. One thing is for sure: I never left the meetings feeling that Grant wasn’t trying really hard.

I was amazed by how young the counselors were—kids in their early twenties. They were giving up the summer between semesters at college or graduate school to work with kids like Grant. Sure, they got paid, but many of them hoped to go into careers helping people with Asperger’s and autism. Besides being really good at what they did, none of them ever seemed to be down. They loved what they were doing and it showed.

Grant didn’t often share a lot about camp. It took mental and physical effort on his part all day, and by the time he got home, he needed to decompress. I’d often leave him alone and let him relax for a while after camp. Usually once he’d relaxed awhile—playing with his Legos or reading about dinosaurs in his room—he was ready for whatever was next in his day, and so revisiting camp didn’t happen much.

When he did talk about camp, the subject he touched on the most was swimming. He seemed to be always concerned about each person in his group doing the best they could in the water. Swimming is an area where Grant shines. He’s a natural at it and it’s a sensory experience he loves. It seemed good for him that he got to be an example and a cheerleader for those who struggled at it.