My son is a third grader but functions much like a six-month-old child, and he is legally obligated to be enrolled in school, and the public school district is legally obligated to educate him. But my problem, or the school’s problem, is that my son is never going to function any better than he is right now, so how do you educate the ineducable? Why do we educate him?
Not so long ago, my son would not have survived to be in school, and he is not alone. More and more children are surviving devastatingly severe disabilities with the help of better medications, better medical equipment and all types of intelligent support. So then what?
Safety tops the school’s list of priorities followed by progress. How do we measure progress in an individual that does not make any? We start by making goals. Once a year we have a meeting where we compile an Individualized Education Plan (IEP). Every three years, it is a more detailed “Triennial IEP” that includes a psycho-educational assessment along with all the usual teachers, therapists, administrators, and if you are lucky, a cheerleader or two to keep your spirit up as you fight for what you think your child needs or doesn’t need. The intent of the meeting is to set goals for your child and to decide what services your child will need to meet those goals. But what do you do when everyone around the table has run out of ideas for new goals because the old goals could not be met and had to be discarded?
My son has not met the goal of paying attention to the teacher consistently for twenty second periods. A goal of touching a button on command three out of five times was abandoned. Once a goal was determined to be undoable, we tried to take the goal down to the lowest level possible. My idea of a goal being to maintain current skill level was said to not be a real goal as progress is supposed to be made. So what now?
Why do we go through this routine every year? This is all fresh in my mind as our school district is currently out of compliance with my son’s IEP. It is frustrating because I have to ensure the district complies with services and instructions in the IEP. Of course, safety, feeding and medication schedules are critical needs for my son, and these instructions are never put off or ignored but when it gets down to teaching my son, there seems to always be a delay in an assessment or in attaining equipment someone deems necessary for my son’s success.
There is only one reason that I accept all of this frustration that is put upon me, my son, his teacher and aides, and really quite a large number of people, and that reason is because most disabled children will benefit from this system of assessment, goal setting, and follow-up. The system makes the teacher and those involved be creative and accountable for their time and their skill with the children in the classroom. There are children that will learn to read, count, and write with great effort made by the children, teachers, and therapists guided by choices laid out in the IEP. Having to be extra observant and critical with my son to try and find his strengths and build upon them will inevitably make these people better able to help children not as impaired as mine. But does the system help my son?
Riding the short bus and being at school stimulates my son, and I believe it helps him to be comfortable outside of his familiar area at home. I could list off many ways my son’s visibility at the school and in the community helps society in general, but taking just my son into consideration, other than the stimulation, his being at school really just helps me stay sane as he’s safely cared for, and not at home, for six hours a day during the school year. Every IEP meeting holds a shimmer of hope that some new idea might come forward to help my son progress, and I have not given up hope that my son may improve some day in some area, but I have learned to love him, adore him, exactly as he is, and if he ever learns to push a button which may allow him to communicate some thing to us, then I will be the first to make him practice and push him forward.
We educate the ineducable because it is nearly impossible to gage who may be silent just waiting for the right therapist to suggest the right technique to make a communication breakthrough. We educate the ineducable because we have decided all children are equal in the right to the best possible education. Perhaps my son and I are put through much more than we have to be, but it is the best system we have right now, and my greatest responsibility is to keep my son as healthy emotionally and physically as possible. With this system, I have the final word on what happens to my son while he is not in my care, and I have ensured that every possible avenue has been assessed for his growth. We all grow from the experience, and that can’t be a bad thing.
