The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (19 page)

Two of Grant’s greatest difficulties were completing work and following directions. Those were due in large part to his ADHD. His trouble with maintaining adequate space and being easily agitated by changes in schedule were both due to his Asperger’s.

To help Grant with his anxiety around shifts in his schedule, Mrs. Trikulous, who would be Grant’s teacher that year, devised a strategy: She would make up a laminated schedule for each day of the week—five altogether—which would help to keep Grant on task.

From the start of the school year, this proved effective at keeping Grant focused and in control. She began referring to him as her “official timekeeper” because he was so hypervigilant about staying on schedule. If reading ran over its allotted time slot, he’d raise his hand.

“Mrs. Trikulous,” he’d say, “we’re still doing reading now, but we were supposed to be done with that five minutes ago and go on to math.”

“Thank you, Grant,” she’d say. “But it’s okay.”

Our meeting before third grade also determined that Grant required frequent movement breaks throughout the day, and during those breaks he would usually seek out sensory stimulation. Grant also had to start participating in more social activities during lunch that encouraged him to respond to limits and engage in activities with other kids. In the classroom, Grant’s teachers would provide him with graphic organizing tools for writing assignments and allow him to take his tests in a quiet setting separate from the classroom, if needed.

While the meeting dealt with these specific techniques for managing Grant’s daytoday classroom behavior, it also focused on the programs the school offered outside the classroom. As mentioned earlier, there are two types of programs for kids with Asperger’s and other disabilities: an Independent Education Plan (IEP) and a 504. Both allow kids like Grant to get special services in school, but the 504 is the less extreme of the two. It allows for them to have certain modifications and accommodations
throughout the day, while an IEP provides for a more tailored education, including more time outside the classroom in special teaching environments, tests that are untimed, and other variations from the regular classroom experience.

During our first meeting in 2007, it was determined that Grant only needed a 504, and a year later, in 2008, we reaffirmed that decision. As part of that program, he met with a counselor once a week for thirty minutes to work on his social skills. The help he got each week with his social skills made it easier for him to understand appropriate behaviors. Sometimes those thirty minutes were spent on his lunch activities, where he’d learn to communicate with and respect others at the table. Other times they were oneonone with the counselor. The goal was to help Grant understand when to talk, when to stop talking, and that it was rude to dominate the conversation.

Grant would also meet with an occupational therapist once a week to address his sensory issues. This work would help with both his ADHD and his Asperger’s. As I listened to the school administrators talking about it, I was amazed at how seemingly simple—yet totally effective—some of the therapies were. One small tactic could begin a chain reaction that would result in a more attuned and attentive Grant. For example, merely placing a weighted beanbag in his lap could calm him. Providing him with that small amount of pressure helped him integrate all the sensations he was experiencing, and with calmer nerves, it was easier for him to focus in class.

The 504 plan also would provide a “sensory diet” in the classroom. The occupational therapist would use an example of an engine to help Grant know what level of energy was appropriate for different situations. She’d ask the question “How does the engine run…” and then fill in a specific setting or situation such as “…in class?” The goal would be to help him figure out that there are times when the engine needs to be quiet and listen, and then there are times, like recess, when it can run high. She would work on cues to help redirect him and would check in with him often, but she would also be careful to give him his own
space when he needed it. Overall she would remind Grant of specific expectations, presenting her directions in a simple manner, both verbally and visually.

Of course, just as in 2007, it was hard not to be concerned about him socially, but as the school year began, it didn’t seem to be a problem. He felt that he had lots of friends at school. Still, I worried about what the kids thought of him.

W
HILE THE SCHOOL WAS
taking tremendous steps to help Grant, the best thing I did for him was to hire Christina, one of his camp counselors, the following year, to come and work with us once a week for an hour. From the start, Christina provided us with helpful exercises and strategies that we could use daily to help Grant work on all of his issues.

The kinds of strategies she devised for his schoolwork were incredibly beneficial, and they weren’t all big changes—they were actually a lot of small things. For instance, when most children are given one of those sheets with multiplication tables and questions, they find the tables useful and go about answering the questions. When Grant was given them, he shut down completely. It was just way too much information for him to digest. Instead, Christina suggested we try flash cards. With those, Grant was able to process one math problem at a time, and because it was more manageable for him, he became more comfortable. As it turned out, this sense of being overwhelmed also had a lot to do with Grant’s anxiety over homework. Following Christina’s lead, we started breaking his assignments down, and with those smaller doses, things began to feel more manageable.

Sometimes her solutions were as simple as a change of venue. Grant was better at speaking than writing and had problems getting his thoughts down on paper. Christina suggested he’d do better on the computer, which had increased his ability to focus in the past. Once he started practicing his
spelling words on the computer, almost immediately the whole process went much more smoothly.

While school was part of what Christina covered with Grant, she would also help with his social issues. One of the most useful tools she gave us was a “social consequences map.” On it there are four columns: (1) my action, (2) how I felt, (3) how others felt, and (4) consequences. She taught us to use this map whenever Grant acted inappropriately so that he could get a broader picture of the consequences for himself and everyone else.

The first time we used the social consequences map was after Grant’s second sleepover with a friend at our house. His first sleepover, with a boy from his class named David, had been a disaster. Grant cried the whole time he was at our house. The problem was that they wanted to play different things, and they didn’t have many shared interests. If David wanted to play a game that Grant didn’t like, Grant would become frustrated by his inability to resolve it, then wander off and cry. He just couldn’t grasp how to handle the situation. David would leave the room from time to time and go play with Garrison. Grant was at a complete loss about how to relate to David, and he didn’t know how to handle the transitions from one thing they might play to another. He didn’t understand about taking turns, doing what each person prefers, or that when you have a guest over, you make them feel welcome by doing some of the things they want to do.

Because of the problems with this first sleepover, we were reluctant to try it again with just anyone. If Grant was going to try once more, we knew it had to be with a friend he really got along with. Eventually we arranged his second sleepover with a boy named Mark, whom Grant just loved. He and Mark had much more in common, and they played together the whole evening—board games, video games, jumping on the trampoline. It was going so well that I was heartened. After the sleepover with David, I’d had this awful feeling that Grant would never be able to relate to other kids and never have close friends.

But my good feeling was abruptly interrupted on the second day. Grant
brought Mark outside and told him it was okay to walk on the pool cover. Grant knew he was not supposed to do that—we had told him a million times. Mark didn’t want to do it, but Grant kept telling him to, over and over. Finally Mark gave in. When I came out, I found Mark’s pants wet, from the pool cover. Mark told me the whole story.

I had to yell at Grant, even though I didn’t want to. I didn’t want this nice kid who played so well with Grant to hear me yelling at my son. I was afraid it would put an end to their friendship.

The next week, when Christina came to the house, I told her about it. That’s when she suggested the social consequences map. I sat down with Grant, and we filled in the columns, with Grant’s action, how he felt doing it, how Mark might have felt, and what the potential social consequences might be. The answer to the fourth one didn’t jump right out at him. Christina said I should also give him my impressions of what belonged in each of the columns.

“Grant,” I said, “I think the social consequences here are that Mark might be mad. And your mom might be mad. And you might not be able to have sleepovers with Mark again. Do you want that to happen?” He shook his head no. The more we used that chart, the more Grant became aware of the impact his actions could have.

From the beginning it was clear that working with Christina was not just about Grant learning, it was about me learning as well. It was about having her coach me through my interactions with Grant and giving me tons of feedback about how I handled situations. Every week Christina would give me summaries to support what we had done with her during our session. For example, a sheet she gave me not long ago referred back to a difficult transition with Grant when she was at our house. He had been reading, and I told him I wanted him to take Christina upstairs and show her his room, where we had just put up his homework charts on the wall. Grant didn’t want to move. He wanted to just keep reading. When I pushed him on it, he got upset.

On the sheet Christina sent me, she wrote: “With the transition today: 1.
I first would have told Grant he has five minutes to keep reading before we go upstairs to check out his room. 2. Give him a oneminute warning, and when the time is up, tell him we are going upstairs to check out his room, and then get his homework done. Obviously, the ultimate goal is that he will get up. 3. I think the more you begin to use transition previewing and time scheduling, the easier the transitions will become. Are you still interested in the daily schedule with him? I think it would be a fun activity for him to decorate a whiteboard and create his own schedule/icons, etc. If you want, I can get some of the materials and create a ‘model’ schedule.”

B
ETWEEN
C
HRISTINA AND THE
teachers at school, I quickly started to amass a list of tactics to rein in Grant’s behavior. While they don’t always work, and some work better than others, by and large they have worked wonders. Here are some of the strategies I’ve learned for helping Grant, from the people at his school, from his camp counselors, from the AANE, from his neurologist, and from my own experience. It’s sort of my Asperger’s cheat sheet, and I’ve found it pretty helpful. I share these with the understanding that every Asperger’s child is different, and what works for one won’t necessarily work for another, but hopefully some of these tricks will help others:

• Preparation: Before we go into new situations, I talk to Grant about what he can expect from the experience and what I expect from him in terms of behavior. This was the tactic I used in the final game of the 2007 World Series. I explained to Grant about the timeline of events ahead of us, about what we were doing there, and about the noises he would be exposed to. It worked like a charm.
  
• Two Choices: Rather than asking Grant broad questions like “What do you want for dinner?” and “What game do you want to play?” I give him only two options to choose from. It helps him engage and decide.
  
• Observation: When I go out in public with the kids, I keep an especially close eye on Grant because he is given to getting distracted and then wandering away.
  
• Don’t Fight Everything: Picking and choosing my battles with Grant helps me maintain my sanity. Grant will try to debate with me and negotiate over every little thing. I no longer waste my time on arguments over the color of the sky, but I dig my heels in when safety is an issue.
  
• Look Me in the Eye: When I need to make sure that Grant is listening to me, I insist that he look me in the eye. Even though I know that makes him uncomfortable, it’s the only way I can be sure he is paying attention to what I am saying. I will not let him go on until he makes eye contact.
  
• Reaction Scale: I use Brenda Dater’s scale of one to five when I feel Grant is overreacting. If he is screaming and crying because he doesn’t want to do his homework, or because we ran out of his favorite cereal, Trix, I will ask him, “Do you think a levelfive reaction is appropriate here? Five is like a call to 911 because your house is on fire.” That lets him know he needs to bring it down, bigtime.
  
• No Body Slams: When Grant expresses his anger by running and slamming his body into me, I tell him, “Please get out of my space,” and that when he can speak to me instead, I’m here for him.
  
• The Palm Rub: When Grant is upset, I rub the palm of his hand. This has a very soothing effect on him. He recognizes how helpful this is. When he is tired or just can’t get his thoughts in order, he will put his hand out for me to rub.
  
• Upcoming Appointments: When Grant has sports practices or parties or Cub Scouts, I start telling him about those appointments days in advance. It helps me get him out the door. He doesn’t adjust well if a practice is called off or a party is canceled, but hopefully we’ll figure out a strategy for dealing with that one of these days.
  
• The Right Time to Talk: When most kids do something wrong, it’s advisable to talk to them about it at that moment, while it’s still fresh. With Grant, that doesn’t work. I often have to wait—sometimes days. And then I have to present it to him first. I’ll say, “Grant, can I have five minutes to talk to you?” Then he’s more likely to listen when I go through how he could have reacted differently.
  
• Social Consequences Map: I use the social consequences map, mentioned above. Little by little, it’s opening his mind to the consequences of his actions.
  
• Grant’s Choice: I will sometimes let Grant choose the dinner a few nights a week, with the agreement that he then has to eat what others choose, the other nights. I also take deep breaths at dinner, and try not to lose my temper when and if Grant gives me a hard time about what’s being served—sometimes even if he chose it.
  
• The Power of Routine: I provide the comfort of structure and routine. Grant appreciates getting up at the same time every day and following the same routine to get ready for school. I try my best not to vary that, and it helps him stay calm and focused.