Liz wrote a
wonderful post about her daughter yesterday. You should read it before you continue any further with this one, so that you can see the juxtaposition I've been pondering in my head all day.
This morning, I chaired a meeting to talk about educational planning for one of my students with autism. There are many, many things I love about this student, including his smile, sense of humor, and his really unusual set of abilities. This unusual set of abilities, combined with a kung-fu grip and a penchant for biting and pinching when overstimulated, also makes him extremely challenging to program for in a public setting. The conversation about whether or not the district is capable of educating him in the public schools is always somewhere on the back burner. This morning, it was more on the front burner. Not because of any specific incident, or lack of progress, or unreasonable demands, but because I watched a parent begin to come to terms with the reality of the dreams she had for this baby, and the potential reality of his adult life.
This family has fought tirelessly for this boy, and they continue to do so. Private therapies, recreational opportunities, maintaining as "normal" a family life as possible with a son who is semi-verbal on a good day, and prone to aggressive behavior when he can't communicate. He's lucky; they're very well-off financially, and have always been committed to public education, as this is the setting where he's most likely to generalize social skills and make connections to the community. All things that parents of "typically developing" children take for granted. Playing on the playground, signing up for Little League, tennis lessons, summer camp. Having a friend to the house for a sleep over. My student doesn't have those social connections, and despite everyone's best efforts, as he inches further into adolescence, he still lacks them in a meaningful way. Plus, even compared to my other students with autism in the building, with whom he has some connection, he's kind of an outlier, a very unique case. So when this parent, who has railed against the system to keep her significantly disabled child in the public setting, has fought and fought and fought for access for him, looks at me and asks if we would consider thinking about out of district placements for him, my heart breaks.
Coming to terms with a disability as signficantly involved as my student's is a lot like coming to terms after some one dies. Parents have talked about a grieving process, as they come to learn who their child is, and what he or she will ultimately be capable of in the course of life. It doesn't mean limiting opportunities, just changing what those expectations really are for that child, that future adult. And this family is certainly well aware of his capabilities, and potential adult outcomes. What I saw today was the beginning of the realization that we just may not be able to keep him wtih his peers. He, quite honestly, needs so much more than we can effectively give him. And, all of us at that table this morning knew it. It wasn't an indictment, or blame, more like the start of resignation. And it's incredibly sad for me. The failure of public schools to adequately meet the needs of the students who need the most, despite everyone's best efforts, is shameful. I spend every day trying to negotiate this disparity, these inequalities, and some days are easier than others. This morning was not easy. I'm wrestling with a profound sense of failure, which will only intensify if we do ultimately decide to send him to school elsewhere. It's not my fault, it's not his mother's fault, but it's still upsetting, all the same.
After this meeting, I was pretty emotional, and closed my office door to try and decompress. And I have to thank MJ for being online at that moment, as he really was wonderful, just letting me tap away about how frustrated I was, and sad, and not trying to fix it, or advise me. Just let me be, and was encouraging and strong when I needed a shoulder to lean on, to process the emotional piece of it all. My colleague Karen came by later, and I was able to process the educational side to the meeting, with someone who's both fought to keep kids in school and fought to find them better situations than their neighborhood schoolhouse.
Sometimes, I guess, advocating well for a child requires realizing your limitations as an educator. Sometimes, as with parenting, we just can't do it all.
Labels: life, work