As I mentioned in my previous post, 6th grade for my son went fairly well.   My son had adapted to the Middle School really well.  He also enjoyed his special education teacher.  There were a few red flags including the focus of his IEP meetings was about accommodations for state testing, there was a discouragement to participate in parent teacher conferences, and a debate about the number of excused absences.

Finally 7th grade rolled around and the year did not start off the greatest.  My son was having extreme tic episodes that would go on for hours.  We had been in and out of emergency several times, with no real help except sedation.  Of course these events resulted in absences from school.  At this point the school was requiring a doctor’s excuse for the absences.  This was a bit ridiculous because we did not run to the doctor every time my son had episodes of tics.  If so, we would be at the doctor’s office every day.  This requirement was really becoming a burden on myself and my family.  It was requiring us to go to unnecessary doctor appointments  which in turn resulted in additional medical expenses, more missed days of school, and missed work for me.  The situation was frustrating. 

At one point I showed the school nurse and my son’s Special Education teacher a video of the tic events which were happening.  They understood the seriousness of the situation.  I explained to them that we had to figure out a way to keep the education process going.  Their suggestion was to get more help from the medical community, which in turn meant more doctor appointments.  My son was already seeing a very good neurologist and a neuropsychologist.  I was really desperate for help and started to go along with the recommendation that involved, as the nurse described, a community approach to my son’s circumstance.  They were suggesting involving  government agencies, the school and social workers into the process.  Once again, there was an expectation that the solution was to change my son.  I tried to point out to them that my son’s medical condition was not going to change, at least not in the near future.  Instead we needed to identify a way to accommodate him.

Here is where the enlightenment happened to me.  I was expecting them to think outside of the box in regard to accommodating my son.  For instance, we could have tutoring, or other methods of getting the materials to my son, other than via classroom attendance.  We needed to fit his education around his availability.  I could not predict when he was going to have these bad tic events.  Also, if he was in school, there is no way he was learning anything or was engaged during these tic events.  It was really teaching him a bad lesson in life — such as going through the motions is enough. 

Since the team was not capable of thinking outside of the box, especially with no major bureaucracy involved,  I realized that the only reason I was going along with the school’s recommendations was to get them off my back about my son’s absences.  It had nothing to do with my son’s well-being.  We already had the best doctors in the field.  It had nothing to do with his education.  It had more to do with bureaucracy such as attendance policies.  I also realized I didn’t need government agencies imploding into our lives and adding additional stresses on the situation. 

I then began re-evaluating the education that my son was receiving.  For the last several years I had concluded that they were not pushing my son enough in school.  He was capable of doing so much more.  While evaluating the situation it occurred to me that the schools were not even meeting the educational goals in my son’s IEP.  A goal is supposed to be able to be achieved in a school year or less time.  In the last four years, I think my son had only achieved two of his IEP goals.  The remainder of the goals just kept rolling over from year to year, or worse, and just disappeared.  I realized they were making no progress.  As an example, my son was studying addition and subtraction facts for the last four years.  He had made no progress in math since third grade, which was the year he started having tics and the year they moved him into special education classes.  I just didn’t understand how no progress had been made in four years.  On top of it all, this is a boy who had figured out addition on his own before he started kindergarten.  Math was supposed to be one of his strengths. 

It was these events that brought me to the conclusion that my son was not being educated in this school system.  He was not making any progress.  He wasn’t being given the same opportunities as other children.  I asked myself who is going to pay the price for my son’s lack of education.  The school?  No.  Instead it would be my son.  I was concerned that if he didn’t get a basic education what was going to happen to him when he became an adult.  To be honest I was totally stressed out about this situation.  I knew my son was just being passed from grade to grade with no tangible goal in mind, other than how to move him through the school system with the least effort and at the least cost.  I knew then that I needed to intervene.  I berated myself that I hadn’t intervene sooner.  Once again I thought our educational system had my son’s best interest in mind and that they were the experts to creating a successful educational environment for my son.  Well, I was wrong.

It was at that moment I decided that I had to take matters into my own hands.  I had to make sure my son had a future.

Continued . . .

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