The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (18 page)

Each day of camp would begin with a campwide sharing session that
would then lead to a group sharing session. Each child would have time to share. Now that might sound simple enough, but in Grant’s group, there were six kids, and they all had issues with communication and with letting others be heard. It was a challenge for them to listen respectfully to each other without interrupting and to make eye contact when other people were speaking. They worked on this seemingly simple task all summer long.

The campwide morning meetings featured lessons of the week. Those lessons would be broken down into smaller lessons for each group. First they’d discuss a lesson, then they’d do exercises, and the theme of the lesson would be carried throughout their day.

Learning to respect individual space is one example of a lesson. Kids with Asperger’s don’t have the same sense of boundaries around individual space that most people have. In the lesson, counselors would explain that, using the term
personal bubble,
and giving the kids visuals to help them understand. They were taught that different people have differentsized bubbles, and that they can change with your mood. They learned that personal bubbles can hold feelings. If you’re happy, your bubble might be smaller, which would allow friends and family to come closer to you. If you’re angry or upset, your bubble might be larger, which would mean that people needed to stay farther away. After that, they might play a game of tag. A counselor might explain to them that when you’re running, your individual bubble is large, but when someone comes closer, that bubble gets smaller. This was helpful for both the kids who tended to come too close to other people and the ones who didn’t like to be touched.

In drama class, they would put on plays with themes relating to social interaction. Each kid had a character that related to the issues he or she specifically needed to work on. All summer they worked on their plays, learning their lines, practicing being on stage, and roleplaying using props. In arts and crafts, they would make the props and sets for their plays. In order to put the plays on for the parents at the end of the summer, they needed to learn
how to work as a team, letting each person say his or her lines without being interrupted. It required them to stay focused in a way that didn’t come naturally to them.

There was environmental education, which included doing archery and taking nature hikes. Each child was given a task on each hike; for instance, Grant’s job one time was to identify trees. They were also taught how to interact in conversations during their hikes and their walks from one activity to the next. This posed some difficulty for Grant because the camp setting did not shake him from his tendency to wander. Sometimes it would be hard for him to stay with the group. If Grant saw a bird that interested him as they walked, he might just leave the group to go see it. The counselors had to work with him on this.

Grant also confided that he did not want to walk with the group. He wanted to walk alone with one of the counselors. He related better to adults, and he liked getting special attention. He thought that if he just didn’t get up to go when the group left and instead stayed behind, a counselor would have to go back for him and then walk with him alone.

The counselors felt this was important to work on. Their solution was to not wait for Grant if he hung behind like that, or if they needed to wait for him, they wouldn’t talk to him. He had to learn the necessity of interacting with the group and not just with one counselor. If he didn’t keep up with everyone, he’d have to walk to the next activity alone. It was a solution that didn’t work right away, but over time it had a positive effect.

When Grant did interact with the other kids, it was initially very awkward. One time, as a boy was telling him a story, Grant started walking in circles. The other boy followed behind him, around and around, so he could finish what he was saying. Grant needed to be taught that even though he heard every word, the message he sent by walking in circles was that he wasn’t interested in what the other person was saying, and that he was being disrespectful. He didn’t know what his body language said—that his behavior was rude.

His counselors were charged with trying to help him figure all these things out. They would break them down in ways that Grant could remember. The trick was getting him to remind himself to be aware and tell himself, “I always have to remember to do this.” That took time, and reinforcement.

They also worked with him on sensory integration. When you or I sit in a chair, we experience and integrate many different sensations at once without any effort at all. We feel pressure from the chair and our feet touching the floor, we hear the sounds and smell the smells around us, our eyes adjust to the light. Kids with Asperger’s can’t sort out all these sensations and experience them harmoniously. Each one stands out and calls attention away from a central focus. Often, these kids feel overloaded by all the sensations coming at them at once. The camp counselors work with them on strategies to help them adjust.

Camp lasted for eight weeks, and after that Grant had a couple of weeks off before school started. It gave us time to get some strategies in place for the new year. One of the best strategies we took away from that first summer was to give Grant two options to choose from, rather than letting his mind run all over the place with choices. For example, instead of asking him what he wanted for dinner, I would give him two dinner options to choose from. It was very clearcut and helped him focus. We also talked to him about being flexible—not insisting that things could only go his way. That one is an ongoing challenge, but we’re working on it.

Grant did so well at YouthCare, we sent him back the next summer. After camp was over that year, the administrators recommended to me that I hire one of Grant’s counselors to work with him and us privately during the school year. They knew that when Grant got into fourth grade, he’d have more homework than he’d ever had before, and it was going to be difficult for him to juggle if he didn’t have help with focusing, expectations, and time management. Also, having someone who worked so closely with Grant at camp come and work in our house for an hour a week would help to reinforce the lessons
from camp. It would help Grant to keep learning, and to continue to develop his social skills and focusing ability consistently throughout the year. We hired a counselor named Christina Lazdowsky, a graduate student, who would help Grant at home.

Going into the fall after Grant’s first YouthCare summer, it was impossible for me not to think about the distance that both Grant and I had traveled in just a year. Twelve months earlier I could barely string together a sentence that had the word
Asperger’s
in it without breaking down. (Okay, that was still more or less true eight months earlier, too—but I was improving!) Now I was entering the school year cautiously optimistic about applying all that Grant had learned over the summer and building on his successes.

W
ITH GRANT AT CAMP
for the better part of the day during the summer of 2008, I was able to focus a bit more on Gehrig. The beginning of the process was exhausting. I couldn’t imagine what made a kid—a boy—stop eating. Curt blamed me for always worrying about what I looked like, and I blamed the media for always focusing so much attention on Curt’s weight. Either way, between the media and me, I felt there was plenty of blame to go around.

Through the therapy, it came out that Gehrig didn’t have body image issues—he was using food as a way to exert control in his life, the same way that he was getting rid of his Adderall pills in an effort to be in control. I referred to his outpatient program as Gehrig’s summer camp that year. He went to therapy, we went to parents’ therapy, and we all went together.

Was it easy walking into a room with parents who knew who we were? I didn’t care. All I cared about was getting my son healthy. Gehrig was gray and thin. He’d been falling asleep in class during the school year. And he had been distancing himself from his friends. You see, having friends at that age would force him into eating situations. Not having a social life solved that problem.

I don’t think we will ever fully understand why Gehrig starved himself. The summer of 2008 was a long summer. A child with an eating disorder will try to control how long he can outwait you. I spent many, many hours sitting at a table with him, not letting him leave until he ate enough. The dogs had to be put away during mealtime, so Gehrig couldn’t quietly feed his food to them. And he wasn’t allowed to go to the bathroom then, either. I went through this three meals a day, with shakes in between. I dreaded it because I knew I was stuck to the chair until Gehrig decided he was done fighting me. It could take over an hour to eat lunch.

One day that summer, Gehrig and I were talking, and seemingly out of nowhere he asked me bluntly, “Do you stay with Dad because of us kids?”

I didn’t know what to say. I was speechless, so he continued. “Why can’t you and Dad be like normal parents and do what normal parents do?”

It didn’t take much thinking on my part to figure out what he meant by “normal” parents. Sure, he wanted us to have dinner and be friends with other parents, but probably most of all he wanted to see us together. He wanted us to go on dates and hug each other. He was right. Even though Curt and I loved each other, we had let our lives become a routine.

At the end of Gehrig’s outpatient “summer camp,” his counselor called us in. “I think the two of you should talk to someone, a therapist,” she suggested. “You need help communicating. You need to do it for yourselves, and for your kids.”

Curt and I had lived our lives essentially apart for so long, now that he was home all the time we didn’t know how to live together and get along. I expected him to automatically know how to do everything I’d been doing on my own for so many years. It made me angry when he tried to do things his own way. We seemed to always be angry at each other.

On top of that, the counselor informed us that the divorce rate among parents of children with special needs is higher as the parents turn on each
other under the stress of the situation. Neither of us was willing to let that happen.

“Would you take us on?” we begged the counselor. She happily agreed.

And so that was how the summer came to a close. Instead of August screeching to a halt with a stressful playoff race looming, it ended with a different kind of victory. A year later, in 2009, Gehrig entered his ninthgrade year weighing 115. He’d gained almost forty pounds in a year. Even though he didn’t feel he could celebrate, we were proud of him for what he’d overcome. Meanwhile, once a week, Curt and I headed to therapy, as we tried to remember why we’d started this wonderful mess of a family in the first place.

ten

Making a (Flexible) Plan

O
UR JOB AS PARENTS IS TO PREPARE OUR KIDS FOR WHAT IS
ahead of them, to teach them the difference between right and wrong and how to choose wisely. Sometimes, especially in the case of a child with Asperger’s, that’s easier said than done. It takes parenting up to a whole other level.

After Grant’s summer at YouthCare, I realized I needed to play a more active role in making sure he got the special services he needed, in and out of school. Grant was about to enter third grade, and while I had met with people at Grant’s school on a few occasions during the first school year after he was diagnosed, I still had a hard time wrapping my head around the scope of what was required for him not only to excel, which we knew he could and would do in certain areas, but to survive socially in the classroom on a daytoday basis. That said, each time I went in, I felt a little bit better prepared and more cognizant of what they were talking about.

What I didn’t realize that first year but learned through YouthCare was that meeting with Grant’s teachers wasn’t just your runofthemill parent-teacher conference but with more people; this was about tailoring services to
meet Grant’s needs. It was a complex and layered problem that would need to be readdressed and revised—not just throughout the year but throughout his education and ultimately throughout his life. We would have to keep coming up with different life plans for Grant at different stages, because two years down the road, the plan we put into place for third grade would no longer work for him. That fall we began a routine with the school that we keep in place today, revisiting his plan every six months, unless his plan isn’t working out for him, in which case we can meet sooner to discuss his needs.

I have to admit that when I sat down for that first meeting at the school after Grant’s diagnosis, I had no idea what went into getting services for a child. I had no clue about the protocol or what I even wanted to see him getting. This was my first experience with Asperger’s, while Grant’s teachers and the school administrators had dealt with this before, so I decided to sit back, listen, and hope they would guide me with nothing more than the best intentions for a great education for Grant.

As we sat down to plan things out for Grant in the fall of 2008, we looked specifically at how Grant had dealt with the school environment. A big part of how the school administrators and I plan for Grant is that we pay close attention to the specifics of Grant’s personality. Though kids with Asperger’s share certain traits, there is a lot of variation among them, and one of the biggest sources of variation is in how they deal with school. What we found as we looked over Grant’s first school year since the diagnosis was that he had still managed to perform well. The good news for Grant was that because he is bright, his disability didn’t interfere with his ability to be a good student. The bad news was that it did affect his ability to get the most out of school.

To help me understand, they showed me the charts they used to determine a child’s needs. Using one chart, they considered how much the child’s disability affected one or more of his or her life activities in and around school. For Grant, two factors were having an impact on his activities: having ADHD and having Asperger’s.