What got my attention though was the boy's response to being silenced;
Christian concluded his talk by telling the audience that his self-advocacy work had taught him, "Nothing for me, without me," and left the microphone.
That's something for his parents to be really proud of.
I started thinking about this in more detail, thinking about how my wife and I have been going to IEP meetings without our sons and how the things we've been doing for them have been "without them". I think there's a big flaw in our plans.
The Initial IEP Meetings
There's no doubt that the initial IEP meetings need to be conducted without the child being present simply because they're a time of deep emotional stress for the parents and teachers. In those early days, one of the parents is often in grief and the other is most probably in denial. The teachers are guarded because they don't know how the parents are going to react and whether or not they're going to sue them or try to force a different curriculum or unrealistic expectations upon them.
Those early IEP days were a time of struggle when parents and teachers alike went through whole boxes of tissues and where voices were raised and threats were made. It's not an environment I'd want my children exposed to. Thankfully after the first couple of years, things settled down for us and we all realised that while we were coming from different directions with different budgets and expectations, we were actually working towards the same long term goals. Our IEP meetings today a breezy, chatting and fairly productive.
Getting the Child Involved
This brings us back to the line; "Nothing for me, without me". It's a common cry within the autistic community. For example, there was a big outcry directed at "Autism Speaks" because they did not have a single autistic member on their board. I'm not sure if that's changed now but I have checked on the web and if they've rectified the problem, they're not being very vocal about it.
I started to think about the whole IEP process. It's aimed at understanding where our child is struggling and finding things that will help him to achieve his educational goals. Who better than our son, to tell us what he finds challenging and what will and won't help? Why are we ignoring him in the IEP process?
I think that perhaps, given that my eldest is thirteen, I need to sit down and discuss the situation with him. If he wants to be involved, then I think we need to make it clear to the school. It might be time to start including him on his own advocacy.
After all, it's something that he'll be doing for the rest of his life. He might as well learn it now.
