I know some folks find the whole warrior metaphor ugly and inappropriate- but I'm not battling autism. I'm battling the need for Joey's autism to be accepted, understood, and properly supported in school. We have been bitterly reminded of the consequences of losing that battle lately. Joey cannot afford for me to fail, and it becomes increasingly clear that other folks trying to help him have limited capacity to fight, for a variety of reasons (including, unfortunately, job security).
The good news is that we have been mostly blessed with awesome teachers, not just now, but all along the way. A school is only as good as the teacher in front of you. Unfortunately, we are also stuck being something of a pioneer through our system- insisting on services, having a child with Joey's communication issues and social difficulties in "mainstream" classrooms, and even having a child like Joey who doesn't fit what people expect of an autistic child- these things work both for and (mostly) against us. We have teachers who love our Joey and are willing to try. That willingness has proven to be essential and vital to Joey's success, but also reveals basic discrepancies in training, understanding, and experience in many situations. Like the general population, school faculty far too often have limited exposure to and understanding of autism. And then they find a child like Joey, and it completely blows all of their basic training on the subject out of the water.
People forget the Joey has disabilities of a nature that are not readily apparent until need for support becomes dire. Or they miss the meaning of what Joey is trying to do and say. It makes for misunderstanding, surprise, and broad-siding that can have drastic consequences.
Allow me to conjure you an example.
One of the exercises at school is to give the children a "prompt" and have them write about it. Some weeks ago, the "prompt" was about Your Saddest Moment. We can discuss elsewhere why this might be a challenging and inappropriate writing prompt to present to my son, especially in the face of the difficulties we are having with him and his emotional well-being and coping, but hey, I wasn't there. To get the children started, the teacher offered her own example: her fish died.
Joey had a fish, and it died. He often perseverates on this in bursts, and has a great deal of trouble processing the idea of death. In fact, I can say with some certainly that this assignment was likely about three weeks ago, when Joey came home with perseverations on historical figures and the birth and death dates, their means of death, and then started looking up obituaries of random people on the internet.
So her fish died. Joey has a fish that died, and it made him feel sad. I bet the class talked a bit about the death of the fish and why it made the teacher sad.
Now she is surprised that he sometimes come into her room and tries to open up conversation with "I'm sorry your fish died."
The other day, when he did this, she attempted to seize the moment to show Joey why this might not be a good way to open a conversation. She reminded him that the subject made her feel sad, and asked if he was wanting her to feel sad.
His response? "Well, you can just kill me, then."
He picked up on the fact that the teacher was trying to tell him he had made a mistake, and that the mistake had hurt her feelings. HIs attempt to connect and capitalize on common ground had failed. His instant response was to be sad himself, and try to make it better by suggesting a phrase that he associated with being sad and feeling depressed: "Kill me now."
In shock at his words, she responded by arguing with him- she wasn't going to do that, etc. And so he moved on to a new shock phrase, to get her attention and make her stop... and unfortunately, that phrase was, with a smile of sorts still upon his face and a conversational tone, "Then I'll just kill you."
You can see where this might get ugly.
Fortunately, the teacher did not over-react and take this as a real and immanent threat. However, it was also fairly clear that she does not speak Joey, and had no idea how the conversation had gotten to that point. She had no clue that she was teetering on the edge, and playing with fire- that such a response, even with his apparent calm, was a huge bonfire signal of "DANGER, WILL ROBINSON! DANGER! ALERT! ALERT!"
I assume at that point it was time to start the day and the natural distraction of having to attend to the schedule and daily tasks averted disaster, since the meeting was the first I had heard of this incident. That such an exchange might have been important enough to report to me and to the other staff immediately was something that seems overlooked even in the midst of the meeting.
Yes, we are starting on an FBA, which will take at least a month to complete, and who knows what might happen in that (very busy with schedule changes) month. But somehow, it is incidents like these that ring in my head with the potential for disaster. It is stark reminder that I could win every single battle- go in and throw fits and stomp my feet and get the school to do study after study and make plan after plan- and still lose this war to their basic and profound ignorance and lack of training, understanding, and experience. And BIP only works if it is just right, and followed with understanding and acceptance. And I have no magic wand to wave and get people the experience and exposure they need, right now.