A Tourette Syndrome mother’s long journey, part 3

This is part 3 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son. You can read part 1 here and part 2 here.

The school district my son is in, apparently like many others, are resistant to  accommodations. I had to push and become less than favorable in order to get more support at school for him.

The staff at Spencer’s school were resistant to any diagnosis because they did not want to deal with him. The reasons why people go into education has been lost with many teachers, who only want to work with those who fit into that “perfect student” mold.

Even though my son had the Tourette’s diagnosis, I still had a lot of resistance when it came to getting my son accommodations he needed. Even though it is mandatory to follow an IEP, it takes the parent staying on top of it to make sure it is being followed. I had a special IEP meeting and was thankful to have Susan Connors speak on my behalf via speaker phone.

The principal actually had the nerve to call Susan beforehand to try to get her to convince me to move Spencer to another school. Susan informed me of this beforehand in a private call. I could not believe the audacity to do this, especially given Susan was advocating for my son!

The school he was in was very resistant to accommodations because they were a fundamental school, but clearly this school had some issues of their own. I insisted on and got him an aide in the classroom, but this was unsuccessful because the aides were inconsistent.

I switched my son to another school with more resources, but because of the teacher’s inability to show compassion, my son did not do well in her class. The extra resources he had helped, but it was not adequate for his needs. The good news is that Spencer’s tics were mild after many years of ups and downs with medications.

We found a “cocktail” that works to take the edge off of his disorders, but daily struggles and challenges are a reality. It is not until my son went to a public middle school with full resources under special education that he actually started to enjoy school.

I never thought having multiple classes would help with his struggles in a single class, but it makes perfect sense: He is socially challenged and often turns a situation into something worse because he does not think first. He has never really had friends, just people he knows.

I put him in martial arts classes years ago for two reasons: He could never play on a team sport with his challenges and he needed to exercise. The other is for him to know how to protect himself because he is not so eloquent when reacting to a situation. My getting a call that he has been hurt is hopefully something I can avoid as a mother.

I still get the e-mails and calls here and there about Spencer’s behavior and executive challenges, but it is much better than the beginning days years ago. He will forget or lose anything if it is not attached. He is often confused about homework assignments and  spaces off. He forgets what he is supposed to do when he turns around. He is challenged in being truthful, even when you catch him red-handed.

I best describe Spencer as having a  filter coming in but not going out. He is now a teen, so in combination with his medical condition and male hormones, it difficult to start off any day on the right foot. Struggles to get him out of bed and out the door are draining. I have to micromanage him on everything because if I don’t, it won’t get done.

I have worked on getting him to be more responsible, but this is the biggest struggle with him. He is not a motivated child unless it is for video games or food. If he messes up he will apologize, but I know he will do it again. It takes a conversation to get him to realize he is wrong, and he usually throws in drama. He is truly disabled, but because his disabilities are on the inside, many don’t care to take the time to ask “Why?“ before judging.

I find that the most difficult part of my son is what are essentially his hidden disabilities. He looks like a “normal” child. He is tall, smart, handsome, loving and engaging. He is truly sorry for many of his actions, but I have become numb to his apologies after many years. 

Though I understand he is disabled, it is difficult to not be concerned with how unforgiving his excuses will be in the adult world.  I am constantly reminded of the possibility he may never be able to support himself. It can be depressing and scares me.

I am the kind of mother who expects more out of her children in a world that has become incensed to simple human compassion. I have worked tirelessly to hold my son to a high moral compass with the hope that one day it will click. It  is not easy to constantly hold him accountable when he truly does not get it. I just dig in and do what I need to. I am not the most fun mom by any stretch.

Leave a Reply

Your email address will not be published. Required fields are marked *