Monday, October 4, 2010

Making a Connection

So, Ethan's been going for outpatient speech for about three months now. I thought it would be a good idea since he really experienced a language explosion awhile back and Birth to 3 technically only allows for an hour hour of speech a week. I thought it would be a good idea, but now I'm not so sure. Ironically, Ethan's outpatient speech appointment is usually the place and time he uses the least amount of language.

Way back at the beginning of Ethan's therapies, I talked about going back and forth between which kind of therapy to sign him up for, ABA (the structured, standard type of ASD therapy) vs. Floortime (the play-based, less proven, let-the-child-take-the-lead mindset). In the end we chose ABA, but a kinder, gentler, more intuitive program that still lets the child be a child, and I've never regretted the decision. Most of the people Ethan sees subscribe to this method. Most, but not all.

Picture this: old school ABA would be a child sitting at a table or in chair, looking at flashcards, doing repetitive tasks that are reinforced with some sort of treat. I am not denying that there are children who need this type of therapy. But I also know it's not right for Ethan.

Ethan's outpatient speech therapist, Jen, is a lovely woman who is open to new ideas and is kind and friendly. She's great at what she does. What she has is a fountain of knowledge about how kids with autism are "supposed" to receive speech therapy. And so when Ethan goes into the room, he sits in a chair for a half-hour. She uses PECS (a picture communication system) to talk about everything we're going to do, because kids with ASD like to know what's coming and PECS is often a useful way of demonstrating that. Even saying hello and goodbye is on the picture schedule. Every word is slowly enunciated. Every action is meticulously planned. Last week it was showing him how to use three different types of toy foods on the pretend stove. Everything is rote and when he's in there and not acting passive aggressive (his behavior of choice at this appointment) I can almost see the gears turning in his head. He's not learning, he's just deciding to repeat exactly what they're telling him to do because he wants them to stop bugging him. The joy has gone out of it.

Again, some kids need this and some kids will only learn by this type of method. But I know Ethan is capable of more. I know because I've seen it. The challenge is, sometimes I know some tinkering is in order but I'm not sure what. I thought getting him out of the chair would work, so I asked them to be a bit more casual and let him play on the floor. In other situations this works, but now I think he's SO nervous coming to this appointment, and feels SO much pressure, all he does is play with the puzzle-piece mat beneath him and try to connect the pieces over and over.

I can understand how he feels. I imagine walking into a room and having someone say in a sing-songy voice, "Hello Deb. What would you like to do today? Let's look at our pictures. First we're going to say hello. Hello Deb!" (Ethan usually looks at the "Hello" PECS picture on his schedule and says "Bye-Bye" because he wants out of there). I imagine the person speaking slowly, almost soothingly and hypnotically, "Would-you-like-to-play-with-dollhouse-or-toy-food?" "Which-one?" Then waiting. Then not getting an answer so saying "Okay. I choose food." Then having someone tell me I can only choose a certain three foods and then must put them in a certain pot and then in a certain place in the stove that's functioning as the pretend oven and then making a ding! sound when it's done, and then do the same thing in the same way with another type of food, and then another, because that meets the objective of learning to play flexibly in three different ways.

Ethan's not having much of this, because he's not feeling it. He's not making a connection. "I wish," said his main therapist, Jessica, when I told her about some of this, "that she would just throw some of the things out of the window about how you should do speech with a kid with autism and just talk to him. Just say hi. You don't need a picture for that."

Which is why I could just hug Jessica. Which is why I'm so grateful we've had her around for almost a year now (but will - sniff! - soon say goodbye when Ethan turns three).

This morning Ethan had an appointment at home with Theresa and Amber, who are great. Out of all of his therapists, I'd say Theresa is the most strict with the classic ABA stuff, though, and sometimes it causes Ethan to tense up. At first he didn't want to leave his keyboard, which is typical. Usually once he decides he's ready to start, though, he'll plunge into his routine. We do pictures but it's not so much for communicating...they aren't the offical PECS pics, just photos of toys around the house. It gives him an idea of what's coming and gives him some choices.

"What do you want to play?" asked Theresa, and Ethan went over to his trains and began taking them out. He had a gleam in his eye. He likes his trains, and yeah, he usually plays with them the same way, but he loves them. They make him happy.

"Wait, we have to put more pictures on your schedule," said Theresa. "What are we going to do next?"

"Trains!" cried Ethan. He was setting up the tracks, motivated.

"What else do you want to do, Ethan?" asked Theresa. "We have to fill up your schedule. Do you want to do Potato Head, or Etch a Sketch?" This is a conversation we might have on any given day, but something today was different.

Theresa took the box of train stuff away from Ethan until he answered her question. His eyes filled with tears and he began crying in earnest. "Move please, move please!" he asked her, wanting the trains back.

"Remember, I have a two-year-old, too. I'm used to these tantrums," she said to me as I stood watching from the other room.

I couldn't answer at first because there were tears in my eyes and a catch in my throat that I was trying to swallow. I don't think this is just a tantrum, is what was racing through my mind. My boy just wants to play with trains like any other kid. He doesn't want to have to go through a schedule. Maybe that's good and he enjoys that on another day but today he just wants to live in the moment and play with his trains and not plan everything out and have to talk about what he's going to do before he does it. He just. wants. to. play.

I murmured a few words about him wanting to enjoy his trains and Amber got my point. She took the laminated board and all of his pictures, turned them upside down, and raked them into a little pile out of sight. "You know what? Let's forget about the schedule this morning," she said.

And so we did. And Ethan played with trains, and his gear toy, and his puzzles and more puzzles. There were no more tantrums. There was lots of spontaneous conversation and best of all, smiles. Fun. Excitement.

The best kind of learning and relating is accompanied by an emotional connection. That goes for all of us. That goes for all of life. How many times do we talk about how difficult it is to do something 'if our heart's not in it?' That goes for God, too, for things of a spiritual nature. I think about this all of the time. God is not the demanding God insisting I check off my checklist of good Christian deeds to earn the favor. God is the parent longing for us to make the connection, longing to see His children play rather than strive and stress, and make good choices because they want to, not because they have to.


Anonymous said...

i know you've made suggestions to the speech therapist already, but you might talk with her more about your concerns. if she is truly open she should be willing to take a more individualized approach with Ethan. otherwise it might be time to move on.

i love your insights in the last paragraph. i pray for an "into-it-heart" when it comes to living the way He wants me to.


Deb said...

Thanks for the insights. I keep going back and forth on this. I need to learn how to be more assertive, because I'm sure this won't be the last time I need to speak up forcibly about Ethan's care.

Thanks for sharing...still praying for you and your family during this time of waiting and trusting!