My son has a number of different health issues and learning disabilities. His kindergarten teacher after about four months recommended that we get an IEP in place for him. Unfortunately our family had to relocate to a new state. It also meant my son would have to leave his school in Ohio, go to school with my sister’s children for a few weeks as we were finding a place to live, and then eventually enroll in his new school (HES).
Once we were registered at HES, I met with the principal, the nurse, and my son’s kindergarten teacher for the purpose of explaining what type of support my son needed as a result of his health issues, which at that time included epilepsy and tremors. I also informed them that the Ohio school was in the process of getting the IEP set up. HES said they would evaluate the situation and get back with me.
Meanwhile I was looking for a new neurologist to work with my son. His seizures were not controlled yet. The harder seizures stopped when a vagal nerve stimulator (VNS) was implanted. Yet, he was still having many seizures throughout the day. We had tried numerous anti-epileptic drugs and had no positive success. When we relocated to this area, we were close to Mayo Clinic where we had a referral from my son’s Ohio neurologist. We tried working with Mayo for about six months. I soon learned they did not have a clue what to do. They kept looking for a typical case, which would have a typical treatment plan. My son’s condition was far from typical. So I went on a search again, and found a neurologist that specialized in pediatric epilepsy that practiced near us. It took him about eight months to find the right combination of medications to reduce the number of seizures. He also had my son referred to a neuropsychologist who ran tests on my son to determine if there were learning disabilities or other comorbid conditions such as ADHD or Autism.
By this time my son was in first grade. In first grade his teacher had a baby and as a result of this situation part of the year was covered by a substitute teacher (looking back this was the beginning of issues with school). In first grade they finally got him on an IEP and it indicated they would provide special help with reading, language, and OT for his tremors. At the end of second grade his teacher told me that by the end of the year my son was starting to struggle with math, and she suggested that I get this addressed in his IEP.
About the same time we received the test results from the neuropsychologist. There really wasn’t anything unexpected there. They indicated he was above average on the intelligence test. There were signs of reading difficulties, characteristics of anxiety and attention issues. The area he did the best in was abstract problem solving. Along with the results of the tests, the neuropsychologist provided me with specific information about what my son would need to support him in school, both from a medical perspective and an educational perspective. This document was a real blessing because it took the control out of the school’s hands. Besides being supported for reading, they indicated he would need help in math, and his tremors were drastically affecting his ability to physically write, which in turn was affecting his ability to compose a report or do written communication. They recommended that alternative tools be used for writing. They suggested that we start teaching my son how to type as soon as possible or use a voice recognition software. They also recommended that any school work sheets that were used in his class needed to be adjusted so that all writing areas were magnified. And finally he should be given special assistance for any type of testing that was done, including help with reading, writing, a quiet environment and an extended time frame.
I used the neuropsychologist report for everything my son needed. I took the assessment out of the hands of the school, and I had very specific instructions that were necessary for my son to succeed in school. I soon learned that the school system was very good at going through the motions to make it appear they were doing what they were supposed to do. The key word here is “appear.”
As an example, the recommendation regarding learning some alternative tools to compose written communications occurred when he was in second grade. By the time my son left this school after fifth grade, he had not received any extra teaching for keyboarding. Each year all of the students would have a 2 or 3 week course in the media center for key boarding. In reality my son needed more than 90 minutes a week for 2 or 3 weeks. The school also appeared to pursue a voice recognition software. They kept saying it wasn’t working because my son’s voice was affected by his VNS every five minutes and they couldn’t get the software trained to properly work. Plus they said they could not teach my son how to edit his work using the voice recognition software. After a year and a half of these excuses I bought my own personal copy of the software. Within one weekend I had my son dictating a report and editing it. It wasn’t perfect, but it was communication, and it was far better than writing words on paper that my son, or anybody else, could not read. It also gave him the experience of composing a sentence, and building it into a paragraph, which he had not every experienced before.
Over the summer I hired my son’s second grade teacher to tutor him in reading and comprehension. We also saw an occupational therapist to work with his fine motor skills and to address some sensory integration issues that had been diagnosed.
Finally my son had reached the third grade which was a major turning point in my son’s education. His issues with reading and writing had progressively gotten worse. He was about a year behind in reading. He also was still not able to physically write. And then a new health issue appeared, which sent us down a path that I have been finding it hard to diverge from.
to be continued . . .
Snowflakes 