My son & tourettes

[lynnie1264]

Hi all!!!

Just thought I'd write something about how my 8 yr old son feels about TS. As I have mentioned before his is classed as mild... thought as usual every day can be different. At first he was abit confused as to why his neck was moving, and why his face would contort sometimes. After his diagnosis he seemed to accept that it was ok, our pediatrician was great and didn't make a big deal of it which is good. My little boy thought the Dr was cool.

When we decided to eliminate certain things he was fine about it. However I went into his room that night and he was rather upset. I asked what was wrong and he started to cry and said "I hate having tourettes." Immediately I thought the worst, oh no it's really affecting him now I figured. My heart was breaking... until I got to the bottom of why he hated it. It was because he had to eat special food... I felt relieved to say the least. The tics weren't the issue. His other worry was that he would "have to get on a plane and travel to the other side of the country and stay in hospital" without me there. He thought that from watching real life medical shows where kids were really ill, like cancer etc, and he thought that would happen to him. That's when I realised that most of his worries were coming from things he didn't understand... so I explained to him {I thought I already had} that TS didn't require him to ever be in hospital, maybe some Dr visits, and that he certainly wasn't going to die or lose his intelligence. {and he is pretty smart} He went to sleep a happy boy after that.

 

A week or so later his grade had a special under 8's day at school. As a

I watched him making some kind of food bracelet I notived the little girl beside him was displaying a few ticks too, they were obvious. I asked him later if he knew that girl and he told me it was his friend and said "did you know she does funny things with her face too?" Turns out there is another boy in his class who has arm tics... the wonderful thing is that it had never come up in conversation, it wasn't important. None of these kids get teased at school, it's just who they are.

I thought that was beautiful.

 

When we were having morning tea the same day I overheard my boy telling his friend "you know when I do that thing with my neck? ... well that's my tourettes." He was smiling as he said it with a mouth full of food {manners? } and his friend says "cool!"

 

Sorry for the ramble on but I just wanted to say that we may think our kids understand TS but we need to make sure they know they won't die from it or anything like that.

Also I wanted to let you know that isn't always a huge deal to our kids or their mates. We {or I} can get so caught up in how we feel that we can under estimate our kids .

 

Take care everyone,

Lyn.

[Betty04]

Hi,

 

 

Thanks for sharing your experiences. It is reassuring that maybe what I worry about is much worse than what my son's experiences will be! Betty