Our Experience . . . (continued 3)

As I indicated in my earlier blog, third grade was a significant year for my son.  It is then that he started to exhibit some medical unusual symptoms. During the second half of the year my son was experiencing extreme body movements along with pain-sounding yelling.  The neurologist and neuropsychologist debated if these were non epileptic seizures or Tourette Syndrome or a combination of both.  What we did know is the EEG of these events did not have the pattern of an epileptic seizure.  We worked closely with the neuropyschologist to provide a plan for the school with direction about how to deal with these events.  In addition we set up a plan for my son to see the neuropsychologist on a frequent basis.

Keep in mind, my son’s first kindergarten teacher recognized he had learning disabilities.  By the time he was in first grade that got him reading and language support.  In second grade the school added some occupational therapy support.  Then his second grade teacher had reported that at the end of the year my son was having difficulty with math.  Even though I brought his second grade teacher to my next IEP, no actions were taken. 

During the second half of third grade the topic for math that was being covered in the classroom was learning addition and subtraction facts.  In my opinion this is what triggered the movement and vocal tics that my son was experiencing.  The way the students were being taught the math facts was via one minute timed test on a specific set of math facts, which progressively got harder as you worked your way through the sets.  Each student had a goal of how many correct math facts they could do in one minute, which included taking into consideration their writing speed.  As time went on, I finally figured out that it was these tests that were causing my son anxiety and the result was these extreme movement tics and vocal tics.  Just bringing out the green piece of  paper that the tests were given on would cause a round of these tics.

When this first started my son missed quite a lot of school because he had these movements at night for hours at a time and he had a difficult time functioning the next day due to lack of sleep.  The other big issue was his safety.  There was no way to truly predict when he would have a bout of these movements.  He would fall down or have his arms jerk.  The potential for him to harm himself was high.  Eventually the school understood there were certain things needed to be in place before he went back to school. 

My son needed a private place in the class room that was safe and provided privacy when he was having a round of tics.  They placed a bean bag behind a screened area. This really didn’t give him privacy.  The whole class knew he was having problems when he went behind the screen.  They could also hear his screams.  You can imagine the embarrassment he felt.  Just another thing raising his anxiety.

 They also provided an aide to be there for him so that he did not harm himself.  This turned out to be a big mistake.  She made him anxious and was very judgemental without having any experience with either non epileptic seizures or Tourette Syndrome.  She would constantly tell me son while he was having a bout of tics that he was okay.  To my son, he didn’t feel okay.  The movements were drastic and very real to him.  Telling him he was okay was like accusing him of faking his condition.

My son returned to school slowly, increasing the number of hours as time went by.  While he was in this part-time mode the school provided a tutor for him.  Unfortunately the tutor was his third grade teacher.  At the time I didn’t realize she was part of the problem.  During these tutoring sessions they required me to be present.  The only subject she worked on was Math.  She kept pulling out the green paper timed tests and my son would immediately begin to have these tics.  I finally asked her if she could teach this math without the timed test.  In my opinion, there had to be a way to teach him the math facts without doing these stressful timed tests.  She absolutely refused to adjust her teaching method, and obviously my son continued to have bouts of tics.

Here was an example of a very obvious problem and our school failed to adapt to the situation.  These math facts become a repeating theme in the next couple of years.  The unfortunate thing is my son had figured out addition and subtraction on his own before he even went to pre-school.  As a result of this situation in third grade he started to fall behind in math.  The school had all the information to take action as a response to intervention and instead failed.  The weight of that failure is now on my son’s shoulders.  The math story does not end here.

Continued . . .

Our Experience… continued (part 2)

Our new school appeared to be very nice.  The principal immediately set up a meeting to discuss my son.  Besides himself, the school nurse, a counselor, and a couple of different teachers attended.  I explained to the group that we were originally in Ohio, temporarily transferred to a Wisconsin school for about three weeks and were now living in this school district.  I explained to him that my son’s kindergarten teacher had already recognized that my son had learning disabilities and that they were just starting the process of getting my son some support when we had to move.

It was during this meeting that the principal indicated that they only request records from my son’s previous school, which was the three week school.  In the end it was obvious to me that the three week school had not received any records from Ohio yet and as a result of this had no indication regarding arrangements to be made. 

The remainder of the meeting that day consisted of a discussion about my son’s epilepsy and we watched a video, where his seizures had been captured on tape.  I wanted to make sure that the school could recognize the seizures, because my son’s seizures did not present themselves in a typical, grand mal-like fashion.  I also wanted them to understand what the vagal nerve stimulator was, which my son had, and what to do with it if a seizure should occur.  In the end a health plan was put into place to cover how to deal with the seizures.  At that time, no more discussion occurred about learning disabilities.

It took me about a year to find a good neurologist to take my son’s case.  Originally we went to Mayo Clinic, which was one of the reasons we chose this area to live.  After about three appointments at Mayo, it was obvious I was getting nowhere with them.  Meanwhile my son was having seizures twenty or more times a day.  I finally found a neurologist in a nearby city.  He did a short-term EEG, followed by a stay in the hospital for a long-term video EEG and a MRI.  In the end the neurologist confirmed that my son’s seizures originated in the front left lobe of the brain, with a tendency to spread to other parts of the brain (this is sometimes referred to as the Jacksonian Spread).  He then prescribed two medications.  After about four weeks we still had no relief and he changed one of the two seizure medications.  Within about two weeks my son’s seizures had drastically reduced.

This neurologist also spent time explaining that other things can come with seizures, such as learning disabilities, ADHD, and other things.  He then scheduled my son to be tested by a neuropsychologist.  She would do extensive testing, and provide recommendations for accommodations for school.

By this time, my son was approaching the end of first grade.  The school finally recognized that my son needed an IEP, which was classified as Other Health Impairment, due to the epilepsy.  They told me that they would do some testing to determine my son’s needs.  I shared with them that my son was being tested by a neuropsychologist.  The school sounded grateful when I told them I would share the findings with them as soon as I got the results. I think in the end there was only one additional test the school ran that was not covered by the neuropsychologist.  Thankfully the neuropsychologist gave us detailed recommendations for services or accommodations needed for my son.

Once the school drafted the first IEP they were pretty diligent in including the recommendations from the neuropsychologist.  Besides day to day accommodations, they included access to a reading specialist, a language specialist, and an occupational therapist.  My reaction to this was:  so far, so good.

Soon my son was in second grade and was still having a few small seizures each day, but non as drastic as they were in kindergarten.  By the end of second grade his teacher talked to me privately and said that my son was also struggling with math, especially with the topics being learned at the end of the year.  I asked her for her opinion about shifting my son out of the main stream class and into special education.  She thought it was a good idea and came to my next IEP meeting, which occurred at the end of second grade.

From this IEP meeting, I started catching onto the games played with the “IEP.”  In our experience more time was spent figuring out how to fund accommodations rather than identifying the needs for my son.  The  IEP carry over process from year to year was done in a nonchalant manner and became more watered down as time went by.  I was new to all of this and did not know what to do.  At that time, I thought my son’s education was in the hands of experts who should know what needs to be done.  The big catch was they appeared to be so nice and caring, but in reality they were trying to just “deal” with me, and then do their own thing. 

I was very concerned for my son and knew how critical reading and math were.  I knew that if you successfully learned how to read and do math you could be successful in life.  So I took the matter into my own hands and that summer hired a tutor to work with my son.  The tutor happened to be my son’s second grade teacher. She was successful of getting my son to advance by two reading levels.

Third grade became a pivotal year for us.  A lot happened and the real nature of  the broken school system began to show its under-belly.

Continued . . .