I’ve noted in a couple of posts that Charlie has been saying “no” to getting out of the car, when the destination is a place he doesn’t want to go to and Jim and I do, as he did about a visit to see the High Line in New York via Jersey City. He also did this on Saturday after we’d returned the kayak. We suggested going to swim in the ocean---we were at the beach.. Jim sent down to look at the waves and I stayed with Charlie and 15 minutes passed and Charlie got out on his own and smiled really really big to see the ocean.

Charlie’s had this refusal to get out of the car before. As he’s far past the days of gentle pulls of the hand (any physical effort on our part makes him get annoyed, fast), we’ve had to think of other strategies. Picture schedules have been often suggested: Such a schedule would have, for instance, photos of him at each step of being in the car and getting out of the car. At school, they use a lot of timers and he’s to do whatever is requested in a certain amount of time. We’ve had mixed success using both the picture schedules and the timer at home; for one thing, Charlie associates them with school. That’s not to say he necessarily finds the schedules or the timer negative, but that it’s a school thing vs. a home thing and, like many of us, he has a sense of the distinctions between these.

Jim and I have adopted a strategy that some might construe as “giving in” too much to Charlie. When Charlie won’t get out of the car, or agree immediately to doing something he’d rather not, we’ve acknowledged his position and then waited. We’ve been very careful to keep language to him minimal, only repeating our requests after about five minutes. And, we’ve been very conscious of our own feelings and any non-verbal demands or requests we might be communicating to him. After a short period, we’ve asked him again about doing whatever and if the answer is a “no” or an “all done,” we’ve waited again.

This unscientific method has so far had good data to back it up. Easy-going parental waiting has given Charlie his space, while we’ve still been able to get him to do things that he says he doesn’t want to do but that we (being parents) think he might enjoy and benefit from, if he just let himself try.  Sunday was a day of gloriously beautiful sunshine with a light breeze, just right for riding bikes for bagels. Charlie would have none of that and was very insistent on the car, sitting in his usual spot in the middle of the back and seat and making it clear, no bike ride. We insisted on the bikes, though very quietly, all the while acknowledging what Charlie was feeling himself and not insisting that he ride bikes in five minutes. We did our best not to be or act ruffled. We didn’t place any ultimatums on Charlie (“10 minutes max or no bagels”)---those kind of statements seem to make Charlie upset.

More than a few times, we’ve heard school personnel or therapists say, outright or in passing, that Charlie’s behaviors are better at home because we, his parents, “don’t push him” (to get out of the car fast, for one thing) or we “just give him whatever he wants” or because “he just gets to do fun things.”  This is a sensitive topic, but one I want to address partially because I’ve had a lot of difficulties negotiating these notions with Charlie’s teachers and therapists. The first thing I would say is that, home is home and school is school, and that goes for any child. The second thing is, we parents place plenty of demands on our children, though in a different format and structure. Third, what might seem fun (going to the beach) can in some ways be a reason for anxiety and worry (and outbursts of various sorts) in Charlie.

I guess I would say, Charlie faces plenty of demands and requests from others all the time. He has to do lots of things he’d rather not in general. He does need to be taught and pushed to do these things, but he also must have accommodations that are tailored to his learning and communication needs. I know the world can’t revolve around his needs. But learning to function on “Charlie time” can go a long way.

I’ve made it a goal with myself to be peaceful easy-feeling in my interactions with the school and not throw blame around (however much my maternal instinct rises in me). Teaching is hard work and Charlie is not world’s easiest student to teach. Jim and I have done our best to teach Charlie this summer and we know the challenges. It’s been at the top of our goals to minimize Charlie’s really big tantrums/behaviors/explosions and some adapting to his needs and to his perspective is in order. If we can change what we’re doing to help him learn something, we’ll try it, and then work on building from there.

I know I’m being a bit vague. Jim’s and my strategies are never the sort of thing that fit easily into bullet points. We have several years of teaching experience between us and I think one thing we both know is that teaching is most definitely an art and one that requires being ever flexible and adapting your teaching to where the students are, with the goal of getting them to a place they may not even be aware of or have any desire to go to.

If we hadn’t waited for Charlie to exit from the car on Friday he wouldn’t have had the happy walk up high on the High Line or been able to enjoy a taxi ride through midtown Manhattan. It might seem that we were “caving in” and letting his waiting determine our plans, but we made it clear that there was a bigger goal we wanted Charlie to accomplish, getting to New York. And he did.

Now if Jim and I can get some good two-way communication going with Charlie’s school. We’ll have to work on our strategy for sure.

(And yes, Charlie did get out of the car Sunday morning and had a fine bike ride, with a stop for a mishmash whole wheat bagel.)

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As for why Charlie seems to need a lot of time to transition from one activity to another and, too, to get his mind around one thought to another (riding in the car to get bagels vs. biking to get bagels)---I’m no scientist, but what I’ve read about autism and synaptic connections in the brain suggests to me that those connections don’t happen, or happen very slowly, or happen irregularly and inconsistently, in Charlie. A new study in the September 4th Cell suggests that a brain protein (srGAP2) can affect how cells “change shape, migrate, or differentiate.” srGAP2 has been implicated in a type of severe mental retardation syndrome, the 3p- syndrome, and scientists now plan to study whether it might be involved in other forms of mental retardation and in autism.

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