Chapter 14-Walk With Me

I wish I could raise my hand and say it was my decision to take Josh out of the school system but it wasn’t. My husband was unhappy with Josh’s struggle to maintain body weight. He didn’t like Josh coming home so exhausted he barely had strength to eat.

I don’t remember the exact timing but I think it was when Josh entered Jr. High we were informed Josh needed to get another MMR vaccination. If I remember things correctly the shot was supposed to be given during year five and Josh’s shot had been given to him a few months too early. We were told he needed a booster.

I didn’t argue. I’d learned that arguing accomplished me nothing so I took him to get the vaccination. Less than three days later I witnessed his first major seizure. Nobody will ever convince me the vaccination wasn’t responsible.

He knew it was coming. His eyes started to jump side to side followed by his head jerking to the side. I’m sure the seizure only lasted seconds but it seemed an eternity. When the twitching and jerking stopped he cried as if his heart was broken and I cried with him. I truly sympathize with anybody who suffers from seizures. For me, it wasn’t the action of it that tore me to shreds but his reaction to it.

I’d been through so much. I’d been to Mayo Clinic more times than I can count. I cared for open wounds and recovery from surgeries; I’d taken training as an emergency medical technician that included working the emergency room and done all of it with calmness and confidence. But watching Josh have a full-blown seizure knocked me down.

I grabbed the phone and called my neighbor, all the while crying hysterically. I probably scared her to death. In minutes she and her husband showed up at my door. I will forever be grateful to them for being there and calming me down.

Over the next few weeks the seizures would hit. I always knew when they were coming because Josh knew. And he never once had one he didn’t cry when it was over. We scheduled another trip to Mayo Clinic. He had an EEG and I could write an entire blog on how that was done. Dr. Groover, that wonderful man who I bless often, put Josh on Tegretol and the seizures were soon under control. But our problems with public schooling continued.

At the end of Josh’s second year in Gompers I attended another IEP. And again I asked for home district. I told them I would not allow Josh to go to Joliet High School. Once again I was told Josh would do better at Gompers. Everything was set in place and school was out for the year.

One of my friends is an independent driver who contracts with school districts to transport special needs children. Late in the summer, just a few weeks before school was due to start I met her for breakfast and during our conversation she asked me how Josh was going to get to school. I told her on the bus provided by the school district.

She told me she had talked to the driver and that bus would be transporting a student to Easter Seals and she wondered how Josh would be bussed since the regular bus had this new route. I was surprised so I when I got home I tried calling the school.

Luckily someone was in the office and I asked about the bus and found out the news my friend had told me was true. I asked them why I hadn’t been informed. This was not what I signed at the IEP. I was told that things had changed and again I asked why I hadn’t been called.

No answer. I asked who was driving Josh and found out they had contracted with a retired man from LaSalle-Peru. They couldn’t tell me his route, or how many children he was driving, or if there would be a second person traveling with him to take care of problems should they arise.

They couldn’t tell me if Josh would be the first child picked up or the last. I was getting increasingly frustrated so I asked them if this man had ever changed a diaper or fed a disabled child because if Josh ever got snowed in again who would take care of him? They said that probably wouldn’t ever happen and I said, maybe not but it happened once and I wasn’t willing to risk it a second time.

I was outraged they expected me to put my son in a vehicle with a person I didn’t know, had never met, and didn’t know the credentials on. I asked if I could drive Josh and was told that, of course I could drive my son, but I wouldn’t be reimbursed for my expenses because they already had a contract signed.

I had been so reluctant to make changes in my life. I liked having freedom. I loved going back to school. I wanted so badly to have a life of my own but when they made changes outside of the IEP without informing me beforehand. When they made decisions about his transportation without ever once giving me a chance to be in on the decision I reached my limit.

I’m an easy going person. Most of the time. I am rational and logical and cooperative. Usually. But I can only be pushed so far. I lost my temper and there would be no going back. I let them know my opinion. I hung up and told my husband he was right. Josh wasn’t doing well in public school and I could do it better.

So I withdrew Josh from the school system. I went to the state office. I can’t even remember which one at the moment and signed whatever paper they put in front of me so I could legally keep Josh at home. I was sort of appalled at the whole process.

I remember sitting there, in the office, and asking them if there were any guidelines I had to follow and was told, no, there wasn’t. I left there feeling inadequate, uneducated, and helpless. I was also depressed and saddened that once again my life wasn’t my own.

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