Life is an endlessly-evolving narrative, one with twists and turns and moments of suspense. Sometimes I think my son's life purpose is to make sure the twists and the suspenseful moments are the norm rather than the exception.
We had a fun incident with his transportation a few weeks ago, and by fun I mean the kind where you want to bang your forehead on your desk repeatedly. The kind of fun that makes you wonder if there is a school administrator anywhere who actually knows what their legal requirements are when an IEP is in place. The kind of fun any parent of a special needs child gets to experience on a regular basis. Which is why most of us lean toward rampant alcoholism.
There are important factors to note in regards to public school transportation services and special needs children. If a child's behavior is an adjunct of that child's disability and that behavior does not constitute a danger to the child or to others, the school is required to provide the service. However, on the day that my son decided to make a big noisy stink because he thought maybe doing so would bring his mother home faster, the school prinicipal decided to remove him from his bus despite the fact that neither his driver nor the aide on the bus thought that his behavior was a danger. The school called me to come get him. Immediately. Except I am at work, which they fully well know is an hour's drive away. SG is at work as well, a 45 minute drive. My mother was on that day the closest adult who could get him and she would need a half hour to get to the school to collect him. The principal insisted he be picked up immediately.
What am I supposed to do?
"What would you like me to do?" I ask, a shrill tone creeping into my voice.
"Well, if I had a child with your son's behavioral issues I would have a better backup plan," she informs me.
After I curtly advised her that my mother would arrive as soon as possible, I hung up the phone and started picking chunks of my brain off the walls and floor of my office.
I've since spoken with the district assistant superintendent twice, the director of transportation twice, and this morning we had a followup IEP meeting. At various points throughout these conversations I have raised my voice at least four times and managed to limit my use of the phrase "call my fucking lawyer" to just once, though I'd be prouder of myself if I hadn't said that at all.
I just hate this shit. I hate the feelings of helpless anger and shame when I have to deal with the district's inability to understand either my son as an individual or their own legal responsibilities in regards to his educational services. I hate feeling judged by someone who doesn't have a son like mine, who has never a day in her life had to try to have three or four different backup plans in case things spiral south for her child. I hate feeling like I have to defend our family and the fact that we do have backup plans - about four or five of them - but that sometimes circumstances dictate that none of them are workable at the moment. I hate losing my temper and my composure when I'm talking to people to whom my child's well-being isn't as high a priority as I think it ought to be. And as silly as it may sound, I hate the thought that people somehow think my son's autism is some kind of failure on the part of this family.
I hate that they don't get him. That it seems to me they see only his behavior and his diagnoses and not the person. That they don't see his sense of humor -- or when they do notice it, all they can do is say "but he's so morbid" and act horrified.
I want the best for my son, but I often feel I don't know how to provide that or even to find out exactly what it might entail. I envision a future where instead of the world insisting that my son find a way to conform himself to the needs of the system, the system find a way to understand what my son wants and needs and the best way to help him be his own best person.
His teachers and his support team at school don't have an easy job, I realize that. I don't expect saints and martyrs. And for the most part I believe that his teacher and the people who are supposed to be helping him really do care about his best interests. I just wish it were easier for us to know what those best interests are.