As I indicated in my related posts, the IEP process at school was not ideal. Things that you wanted to happen immediately, ended up taking months. I was soon to know that the educational system hid behind the facade of an IEP. Teachers pretended to care. Principals pretended to have compassion. It took me some time to understand what was going on. I realized I had to fight to get the proper support which was needed for my son.
It was when my son was in third grade that a few unpredictable events happened, which really opened my eyes about IEP’s. It was after this year that I realized that I had to change my tactics and they needed to be bold.
As I said in an earlier post, my son was exhibiting some unusual behavior. It started with a sniffing nose that didn’t seem to go away. Then in October the sniffing stopped, and was replaced with this odd humming. Soon it was November, which is when my son has his birthday. That year a Harry Potter movie made its debut close to the date of my son’s birthday. We were having a Harry Potter themed birthday. After the birthday dinner, presents, cake and ice cream, we went to the Harry Potter movie.
My son was really excited, and the movie theatre was packed. With all of the excitement the hum was going full force. Within the last couple of weeks I had concluded he wasn’t purposely doing it. It had crossed my mind that it may have been related to all of his health issues. I had concern for the situation, but had not figured out what to do about it. During the movie he was having bursts of humming, which he was embarrassed about. I told him it was okay, and if he coud control it, to do it quietly. He tried, sometimes with success, and sometimes not. It made watching the movie somewhat difficult for him.
We got through the movie and as we were heading to the car, I told my son that we could go to the local department store [to be unnamed, no free advertisements for them], and he could get the new Harry Potter video game. He knew the game was coming out and had already expressed his desire to get it. He didn’t get it for his birthday because I didn’t want to spoil the story of the movie. Anyway, we headed over to the store and zoned in on the video game aisle. My son saw the game, and as he excitedly looked at it the hum changed to the sniffing nose.
I was stunned. It was at that moment I realized that these actions (the sniffing and the humming) were tics and that my son may have Tourette Syndrome. I had done enough reading when my son was first diagnosed with epilepsy to know what Tourette Syndrome was. Shortly after the shock, I immediately felt guilty. There were times when I scolded him for making the sniffs and the sounds. I had been angry at him at times because of the humming. I had asked him repeatedly to stop. I felt like I had let him down and I was a bad mom, which crushed me. I cherished my son. He was a miracle in my life. But I didn’t recognize what was happening. I now had a confirmation that he had no control over this activity. His tic had changed right before my eyes. Moms are supposed to know everything. Moms were supposed to make things better. Moms were supposed to be the child’s protector. I really felt like a failure. It was a time when my son needed me the most and I wasn’t there for him.
Little did I know, the sniffing and the humming was inconsequential compared to what was to come.
This is a post that is a part of series of post. To see more on this topic check out the related posts below.