A couple of weeks ago posts about IEPs started showing up on many of the blogs I read. It's that time of the year. It's stressful. It's anxiety-producing, and it's mandatory. I haven't written about our IEP meeting because we haven't yet had one. But we have been having lots of meetings and phone calls and discussions -- all leading up to the IEP. And all of it has made me a bit sad. A bit bitter. A bit less naive.
Here's the thing: we are lucky enough to live in a school district that really is trying to do the right thing. They are strong advocates of early intervention and have hired a company that specializes in ABA techniques to provide all pre-school children on the spectrum with in-home services. The program that this company has developed is truly wonderful -- not your typical desk-top, dtt program -- and it is staffed by the most caring people. The school district has also hired an Autism Coordinator to oversee the needs of all children with autism at all age levels. The Director of Special Education is caring and progressive. She and the Autism Coordinator recently went to a 2-day RDI workshop and are investigating how they might employ an RDI consultant to work with families and teachers.
Sounds pretty good, right? I know that many, many families don't have access to these kinds of services and I am thankful that I don't have to educate the people on our IEP team about Oliver's needs.
And yet I am coming to understand that still -- despite all their good intentions -- they see Oliver as just another boy with autism. And since he has autism that means, according to them, that his education should be structured in a certain way. The real trouble started when I began questioning this rationale. This is when I discovered the myth of the IEP "team". Up until this point I had earnestly believed that we, the parents, were part of the "team". But now I see that this is only true if we go along with the rest of the players. Now we are the rogue players. We are the ones questioning the coach, the strategy and even the rules.
It started simply enough. After a year and a half I saw that Oliver still required a tremendous amount of physical prompting when it came to completing the visual schedule. This was irksome for me because I often thought that those working with Oliver, although well-meaning, prompted him too quickly. They didn't allow him time to process, to mentally disengage himself from whatever preceded. But beyond that, Oliver has never really had trouble with transitions in the rest of his life. We rarely find the need to use physical prompting with him. And with RDI I found that he would even gladly engage in an activity that might not be all that interesting to him. All I have to do is ask him to join me. And, to top it off, I don't believe that Oliver is necessarily a visual thinker. So why the visual schedule? Why keep pushing him to do something that is meant to help him compensate for difficulties that he doesn't really have? The answer? Oliver needs to be able to fit into a structured environment and to understand the nature of sequencing; that everything has a beginning, a middle and an end. He needs to transition at the proper pace and not in his own time. When he comes to need less prompting to complete a schedule they will begin to phase it out.
Can anyone say Circular Logic?
I could waste a lot of virtual ink explaining why I believe that teaching him to comply with an artificial schedule rather than helping him learn to take cues from the environment and to enjoy cooperating on a series of activities is a mistake. But rather I'll just say that this one conflict has helped me to understand a greater scheme of things. It has helped me understand how the specific needs of specific children get lost in the system. Even when that system is made up of caring individuals. That is just the nature of things. An Individual Educational Plan is still governed by what the school district believes to be appropriate practice. That's the system.
Not too long ago a woman with the school district repeatedly referred to Oliver as "low-functioning." After the third time in as many conversations I interrupted her and told her that I thought it was inappropriate. To this she responded: "Oh, we just use that as short-hand in reference to a child's communication skills." That's the system, too. They need labels and adjectives as identifiers. But in the end you have people who are making decisions about your child who are only really acquainted with the modifiers. So in our case you have: low-functioning, autistic child = visual schedule, physical prompting, heavy use of reinforcers.
And so we're opting out. I haven't worked out all the details yet. I don't know exactly how I'm going to make this work. But I won't be sending him to school in the Fall. I won't send him until he is ready and I can't say when that will be. But it feels pretty liberating to know that I won't have to compromise anymore about what I think is right. And it feels wonderful to know that we are free to use our own modifiers. And in our case that would be: eager to please, ready to learn Oliver = Homeschooling.