a little something
Every year I attend several meetings with my son’s teachers. An IEP meeting, a progress reporting meeting, and every three years, the re-evaluation meeting. I hate these meetings. I hate going to my child’s school. I have never felt so powerless, frustrated, guilty, angry, and miserable as I, as a rule, do in those meetings.
I am a teacher, a believer in education. The first IEP meeting I went to coincided with my second year teaching. I am privileged, white, educated, and I know the system inside and out. And yet, mysteriously, I develop a knot in my stomach as soon as we schedule, and it doesn’t go away for a week after the meeting.
For my son’s first IEP meeting, I felt the pressure of needing to ask for the right things. I brought my family physician and two members of the deaf community. These people were kind and helpful, and helped me to advocate for appropriate services for my son. The district agreed with everyone’s points and gave us everything we asked for - mainly, an ASL interpreter to work one on one with Caleb in a special education pull out class for autistic children.
I cried at every IEP through 4th grade, and one of two during 5th grade. For two years I required the teacher to word every single goal as a communication goal. I refused to allow them to give Caleb standardized tests (he has no language - the tests would be ridiculous and show nothing). I felt that my responsibility was to be demanding and get services that my son needed.
If I, with my privilege and knowledge, feel overwhelmed by the IEP process, imagine how it might feel for a parent who doesn’t know the system, whose child is gravely ill, who depends on the school to lengthen their child’s life. Parents of special needs children are like other parents; we want our children to be educated and loved while we are gone. We tend to ignore transformation planning, ptsa’s, sports, music, plays, clubs, and every other part of school. We KNOW that those things are not available to our children. We know that when a school says accessible, what they mean is that they have an elevator and a ramp. We know that when the school mission talks about “All children achieving at high levels,” they don’t mean our kids. They don’t mean that the student on a feeding tube who is likely to die this year will pass the WASL test. They don’t even mean that my deaf and autistic son will learn to use sign language. What they mean is that the school intends that all normal kids will achieve at high levels.
Unfortunately for everyone, when a school says all, but means most, they turn part of their population invisible. They make it so that I have to loath getting the school newsletter, which never has any information about what my child is doing at school. They make it so that parents like me feel alien at school events, and when we bring our inappropriate, difficult, disabled children, they let us know that we are disruptive. If the mere presence of one of a school’s students disrupts a school event, perhaps the event isn’t accessible.
I fought this for a while. I went to PTSA meetings, baked wheat-free cupcakes for Caleb’s class on his birthday, and tried to go to school for happy events - not just for the misery of hearing how much further behind he’s slipping this year, or how many goals from his IEP that he actively resisted meeting. I tried going to see plays where other people’s children performed, music nights where my deaf child always made noise during a solo, and even volunteered for PTSA committees where I could use my grant-writing skills if my son would stop climbing on top of the tree house while I was trying to write. Not any more. I don’t even drop him off at his school if I can avoid it.
On the one hand we are loud like only a deaf child can be, awkward in the way only an autistic person can be, highly, famously visible. On the other, you will find us no where in the school’s mission, their publications, or their events. We are invisible, yet we stand out. Each time I enter Caleb’s school I am reminded that he and I do not belong there.
I haven’t solved this problem; I sit on the other side of the table at other people’s IEP meetings and watch their powerlessness and frustration sadly. I work in a school with highly visible, invisible students roaming the halls. I know about the slippery slope of “almost all students”.
Maybe the real solution is to demand miracles; maybe we should expect ourselves to find ways that all students really can learn enough to pass the WASL. Or maybe the solution has more to do with loving all the kids, as Scheurich and Skrla ask us to. Even if some kids really are harder to love than others, maybe our mission should be about loving them all so well that they find themselves engaged, even ecstatic about learning. If every student is engaged and every student has ecstatic learning experiences every day, then perhaps rigor becomes a byproduct of ecstasy, not a goal to work towards.