Sunday, August 24, 2014

your reward shall be in....the lego store

People, things are getting better! And they were really bad there for awhile. The list of interventions over the past few months includes a new doctor to manage medicine, a new counselor, a new ABA therapist who comes to our home, a social worker, and a few occupational therapy sessions. It has taken a lot of time. And money. But people, we are starting to see some results.

Martin went to church today and had fairly good behavior. He has not been to church in weeks because he knocked someone over and regularly yelled and hit. Although school was a nightmare for him back in April and May, he now says he's looking forward to its start tomorrow. Although he sometimes still struggles with following the social rules of the world, he has been going to places like the pool and the YMCA without much incident. It feels like a miracle.

To be more scientific, that miracle has been realized through ABA therapy. You can find a good synopsis of this once-controversial, and now generally accepted therapy, as part of this article. Most basically, ABA involves breaking down daily tasks and behavioral expectations into tiny chunks. When children perform one of these small acts correctly, they receive rewards. When Martin had ABA therapy as a 4-year-old, he was rewarded for answering yes-or-no questions and making two-word sentences. He was then motivated to work for the rewards offered for three words and four and so on. With ABA, Martin learned to talk.

Martin's current ABA therapy is focused on behavior. It establishes a set of expected (or good) behaviors as well as unexpected (or bad) behaviors. As part of the therapy, we check in with Martin every 15 minutes of the day. He gets checkmarks for every 15 minutes of expected behavior. When a certain number of checkmarks add up, Martin gets a reward. On the flip side, we ignore bad behavior. Even if Martin screams at us or hits or kicks, we pay no attention to it. The goal is that Martin learns that bad behavior does not get him what he wants. Good behavior does.

Martin is currently at the lego store because he made it through church this morning. I know that some of you might think, "Wow, buying kids legos to fulfill basic family obligations? No way." If I didn't have a kid with autism, I'd feel the same way. If a kid can apprehend the rules parents can and should create the expectation that these rules be followed. But what if your kid can't apprehend the rules? What if no amount of explanation gets through? What if the only way to learn it is to do it BEFORE understanding it?

Since Martin got through church today and received a reward for it, it will most likely be easier for him to go next week. And we won't need as big a reward as incentive. Perhaps some ice cream after lunch. The hope is that rewards will no longer be necessary within a few weeks. And then we'll have a kid who understands that he's capable of going to (and maybe even enjoying) church.

Right now, we're still breaking down our days into 15 minute blocks. But soon it will be 30 minutes. And then hours. If I really let myself dream, I think about a time in the near future when there are no charts and checks necessary. And Martin is happy. And I'm happy. I will buy a lot of legos now in order to have the chance of such a day in the future.

Wednesday, August 13, 2014

You can go your own way

I just returned from a blissful vacation hiking the California coast. The day I got home I took Martin on a special outing to the roller rink. Martin is an excellent skater. He's had roller skates for a few years and loves to zip around the neighborhood. Everyone smiles when Martin skates.

Even though Martin skates quite often around our house he has rarely been to roller rinks. It was a huge delight for him. When we walked in the door his eyes grew big. "This place is amazing," he said. I helped Martin lace up his skates and started working on my own. Before I could finish mine, Martin was out on the floor.

When I looked up I saw the most magical and scary thing. 150 people skated counterclockwise while Martin went the other way. As people flew by him he simply charged forward with a look of joy, howling at the top of his lungs. He was thrilled. I was fascinated and terrified. 

Martin seemed to have no idea that everyone else was doing things another way. That's quite typical with autism. Folks like Martin simply don't seem to apprehend the rules. There is something quite beautiful about it. But there are also dangers. I rolled onto the skate floor, caught up with Martin, and asked him to pay attention to my eyes. I told him that everyone needed to skate the same way. He would have to join the others skating counterclockwise. He looked at me with total surprise and said okay. He began to skate with everyone else and things were fine for a little while. But after he took a break and entered the floor again, he went the wrong way once more. Again, I told him he needed to go the same way as everyone else and again he looked at me with a little surprise and said okay. 

With autism, you have to say the rules over and over and over. Not only can you not trust that folks with autism will apprehend the rules on their own, but you also can't be sure that the rules will stick in their heads once you've communicated them. Your best chance is to make the rules available visually by creating a social story. Social stories are little books in which the rules are written down and illustrated. I've written many social stories over the past few years: social stories about getting on airplanes, social stories about where it's appropriate to pee, and social stories about going to the zoo. But at the roller rink I didn't have the capacity to make a social story and I could tell that the rules I told Martin with just my voice were never going to stick. If he's ever to learn that he needs to skate counterclockwise, he'll need to see it written down. 

Our society let's certain people go their own way. Great artists. The filthy rich. Toddlers. It's also the case that certain people feel they have no chance to do things in a different way. Imagine if Martin had brown skin. Imagine him growing up into a tall teenage boy who doesn't follow every rule and might not understand when a police officer commands him to do something. It's a question of privilege. Who's allowed to go their own way? By our society? By the police? By the roller rink staff?