7 March 2001
|Sometimes you stumble into what you need by blind luck. The nursery school principal gave me Laura's name as a speech therapist for Damian. At our first session, Laura turned me onto a book by her idol, Stanley Greenspan. The book is called The Child with Special Needs. Its our bible now the way Sears Baby Book was when Damian was an infant. Its got a similar philosophical bent.
There are two major approaches to treating autistic spectrum kids. The most popular is called ABA (Applied Behavior Analysis) or Discrete Trial Therapy or even Lovaas after the man who developed it. Essentially, you sit with a child at a table, enticing him with a treat -- a cookie or a toy trying to get him to repeat a word after you. Enough repetitions and its set into the brain and can be used in the real world. You give prompts: "Say cat. Can you say cat?" while showing the kid a picture of a cat. Its concentrated work, five or six hours a day with brief play breaks. This is supposedly the only method thats been documented to work. This is the method everyones been pushing on me.
When I read accounts by high functioning autistic adults, Im saddened by how they describe the world of interpersonal relationships. Its as if theyre standing outside a room where everyones talking in a foreign language and they can only catch every third word. They can play at relationships but they dont fully engage. ABA doesn't come close to addressing this. It teaches a child how to function in the world but not how to connect in more subtle and all-important ways.
It doesnt have to be like this. Not for a child like Damian. I can understand a parents desire to do ABA if their child has no words at all, if that child would rather twirl like a spinning top than play a game of chase. You have to start somewhere, after all. But even then, theres more that can be done.
This is where Greenspan comes in. His approach is variously called Floortime, DIR (Developmental-Individual Difference-Relationship Based) Therapy, or simply Greenspan. The heart of it is floor time: you get down on the floor with your child, see what he or she is playing with, and enter into that world. If hes pushing a car, you can put your hand down to form a hill or blockade or you can take another car and crash it into the kids car with appropriate excited sound effects. Youre there to elicit a reaction.
Greenspan calls it closing circles of communication. I ram my car into yours, opening the circle. You giggle and push your car toward mine to do it again, closing the circle. Now I hand you my car and want to trade cars. You pull yours away. Another circle closed. I put my car on your head, letting it fall down. You sit up to grab the car, reacting to my action. Another circle closed. The idea is to build up to twenty or thirty circles in a row. To expand on the childs play, to set challenges, to push the boundaries of his or her comfort zone.
These days if Damian wants to play a game like Bounce on Mommy or Crawl Through the Daddy Tunnel, Mommy and Daddy wont work properly until Damian has undergone a gamut of preliminaries. Push Daddys nose. Okay, now push your own nose. Okay, now push Daddys chin. Okay, now your ears. He does it with delight, accepts it as part of the game, and ends up with his reward tunnel, bounce, or time aloft as an airplane. And were closing multiple circles, teaching patience and persistence, keeping his engagement and relatedness alive as long as possible.
The only reason this type of therapy doesnt have the same facts-and-figures concrete success rate as ABA is that Greenspan has been so busy he hasnt gotten around to documenting it in a long term study (though there are compelling statistics in the appendix to his book). From my own observation, Im sure it works at least as well as ABA. And it just makes so much sense.
Autism is at its heart a collection of neurological deficits that interfere with development. Greenspan says there are six emotional milestones we achieve as small children. If a child is shaky on one milestone, like two way communication, say, because she has trouble following visual cues, shell have a hard time building on that milestone, have a hard time relating to someone else. So the idea is to go back to the root of your childs issues, and build the bridges he or she will need for future emotional and neurological growth.
Floor play goals change and become more elaborate as your child progresses, and you tailor it for the childs specific needs in various areas of development. You can introduce pretend play at a certain point, which leads to all sorts of scenarios where you can act out and help your child to act out whatevers bothering him.
One day at school I had to pee. Damian was completely involved with a toy. I leaned over him, talked into his ear, told him I was going to the bathroom and Id be right back. He didnt respond. I told him again. Still no response. I went. When I emerged from the bathroom a few minutes later, he was standing in the hallway crying while a teacher tried to reassure him.
When we got home, Damian wanted to play with his big red train. We have an identical but smaller brown train, which I pulled out of the toy box. I said it was the baby train. I ran the baby train around in circles and said, in a high pitched voice, "Mommy! Mommy! I cant find my mommy! Im scared! Wheres my mommy??" Damian took the baby train from me and set it nose to nose with the red train. Kissing. Then he lay Mommy Train down on her side and had Baby Train snuggle in next to her.
Were spending a fortune on new toys these days, trying to expand the play scenarios. How many times can you crash one car into another? Ive taken to doing things like tucking the car into my shirt sleeve so Damian can fish it out, then scooting it around my back and letting it play peek-a-boo around my shoulders. But still. Id love to get rid of the cars.
Our big purchase this weekend was a new dollhouse. Plenty of possibilities there, right? Unfortunately, Damian had a brainstorm: Hey, I can race my tiny dump truck and tiny train through the rooms! I wanted to bang my head against the wall. Trucks and trains again. I grabbed a Bendo dog and had it run after the truck and train, barking like mad. (Floor Time aficionados lose grownup inhibitions fast. You have to remember how to play like a child, full out.) The dog caught the train and I secreted the damned thing behind a potted plant, but Damian pulled the truck out of reach.
I switched to language: "The doggies saying I want I want I want the truck! Can I have it, please please please??? Damian says no, you cant have it!"
Damian shook his head emphatically, agreeing with my voiced no! That may not sound like much, and wouldnt be for a standard-issue neurologically typical kid, but for Damian, it was genuine spontaneous communication and meant he was engaged with me and with Bendo Pup, not just with his teeny truck.
Sounds like hard work, doesnt it? It is. It can be exhilarating when youre on a roll, you and the kid, and youre laughing and coming up with good stuff and hes responding like nobodys business. But sometimes hes shut down and you try one gambit after another and he gives you an oh yeah, cute sort of look before he returns to pushing those dratted trains back and forth, back and forth, back and forth in that mindless soothing pattern. And you keep trying because dammit, you have to get a reaction. But your frustration shows and he shuts down more. So you either loosen up and get an inspiration (hey, maybe Bendo Alex can lie on top of the train! Oops, he fell down on the track!) or you walk away, giving both of you breathing room. A child cant be pulled into the world in a day, not if you want to make the world an enticing place to enter.
Floor time work is intense, no doubt about it. We try to incorporate it into every aspect of life: Damian, can you carry the car key for me then put the key in the door? Damian, can you get the broom and help me sweep this up? Damian, its time to feed the cat. Giving him responsibilities, challenging him, keeping him involved in life. And then there are the three or so hours floor play time. Or running-around playing peek-a-boo time. Or bath-with-interactive-play time. Its draining work. But the rewards -- yes, already, the rewards -- are like gold.
Jami came to baby sit yesterday after a hiatus of a couple of weeks. She noticed a distinct difference in Damians demeanor. He looked at her square in the eyes, and much more often. He got himself snacks instead of acting helpless and whiny when he was hungry. When his Brio track broke, he fixed it and moved on instead of falling apart. He waved and said "Bye, Jami" when she left. (Yes, I modeled it for him, but Ive modeled it a thousand times and he never picked up on it, not till now.)
I see many subtle changes. He wades into the group at school now instead of retreating to the book corner. He even banged his car into Jonathans the other day -- interactive play with another child, oh my.
We count progress in looks exchanged between child and parent, between child and stranger. In the way he doesnt automatically cry when he falls but assesses whether or not it actually hurts. In the fact that he actually sometimes comes when I call his name. In how he helped me unload the groceries into the fridge on Sunday and how he pulls us into his games, demanding not only our presence, but our participation. Wanting to engage. We count progress in so many small ways. Tiny steps toward full engagement in the world, toward full language and full confidence.
Its been a little over a month. We can only measure in teaspoonfuls of change, but that there is change, so very many teaspoons to count, thats real progress.
copyright 2001 Tamar