“Coordination”: harmonious combination or interaction, as of functions or parts.”
My son sees a lot of therapists and teachers in one week. He sees occupational therapists (OTs), speech therapists (STs), his Applied Behavioral Analysis (ABA) tutors, his summer preschool teacher, and his social skills class coordinator. When I can work it into the schedule, like last spring, we will do a gym class. And during the school year, there is the school OT and ST.
For the most part, these people do not know each other. When they do know each other, it’s only casual and not part of an in-depth understanding of what one does with my son over the other. So, truthfully, when I see the autism puzzle pieces that are supposed to symbolize autism, I think of the lack of coordination of his care.
Each discipline is doing something different with my child. Each therapist/teacher though, is a variation on the theme – the goal – of making my son the best functioning child he can be. Unfortunately, in the real world no one knows what the other is doing. I can’t help but know that this affects the quality of therapy/teaching my son receives.
For example, this last week in ST, they gave us a new therapist. No one warned us in advance. He was fairly calm about the whole thing but I did have to go into the speech room with him because he was uncomfortable going with two people he did not know.
It turned out that this new ST hadn’t read T’s file at all. She was surprised that he could read because she was trying to test his speech by cards with words on them. He’d been reading all the answers on the cards. Halfway through the session, she asked if he could read. “Yes,” I told her, “he’s been reading since he was two.” Then, she called him by the wrong name. Three times.
I want to do something about this lack of coordination. I must admit that I have been a bit unprepared and un-coordinated myself. Every week, I get a report from ABA about my son’s progress within the programs on which he is currently working. I keep the reports. I follow along in the meetings. I don’t use the reports as a tool to provide his OTs and STs and teachers with so they have an opportunity to see his pace within the program in which he spends the majority of his time.
Truthfully, I rather doubt that if I passed these reports around that the STs and OTs would read them, much less work with that knowledge to better teach my son within their own specialties. I don’t say that in a way to put them down. I just know the reality is that their jobs are from 9-5. I doubt they get paid to take work home and read reports from other providers.
The exception is our OT who has read about and requested additional information concerning my son. However, even in her case, her time is limited. She can’t run around training the ABA tutors to use brushing and joint compression or the other OT tricks that calm and organize my son. The ABA tutors, likewise are working with other children when not with my son so they cannot go to his OT sessions to learn.
If they did coordinate, how would this affect what was taught? For one thing, they would know how much he could read, write, speak, what kind of breaks he needs, how to help him calm down and organize to focus for studying, teach him how to make eye contact, take turns, and comprehend. This would affect how much and what was taught and how to teach it so it would stick.
It’s really up to me to coordinate amongst them. But who wants a mom butting in when they have all had training and education and I’ve got none in their areas of expertise? How scary is that? I’m like a fly watching the bees gather pollen to make nectar. I have to watch and then report to other bees how it’s done? I want to get it right.
I want to be able to take the brushing and joint compression from OT and pass it on in ABA for when my son melts down. I want to be able to take the method of running a program and obtaining compliance from ABA and provide it to the STs. I want the STs to use the ABA reinforcement program while teaching my son how to improve his communication. I want to take the litany of “w-h” questions taught in a good ST session to ABA and make sure they know these questions have been mastered and the ST is moving on to more complex and abstract concepts such as “making wishes”.
So what does all that mean? I guess I can try to pass my limited knowledge of information around. Otherwise, I will just have to sit back and wait for my son to teach the teachers and therapists what he knows so they can teach him more of what he needs. As usual, two steps forward – one back. Someday, I hope for two steps forward and no steps back.