He's starting to realize he's different - Advice

Katie - posted on 06/14/2010 ( 1 mom has responded )

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Hello Again,

I wanted to know if anyone had any advice for me.

We had tried not to talk much about my son's tics in front of him. He is 5 and never really seemed self-consious about them. Sometimes even unaware of some of them.
A string of events have led to him being much more aware including a trip to the neurologist, his dad bugging him about them for a while (thankfully he's stopped), and his general curiousity.

Anyhow, as he was putting on his shoes this morning he was having a hard time. He has this tic where he wants to snap his toes much like people snap their fingers, rubbing his big toe and the toe beside it together to try and make a noise. He sorted of tenses up all his other toes when he does it too. He had one shoe on and was trying to wait the tics out to put the other one on.

Now he won't wear socks and won't properly fasten his shoes because he can't tic right when he does. I can't wait for school to be out so he can have a flip flop summer.

So anyway he says to me, "Mommy, why don't the 'feels like it stuff' (thats what he calls his tics) just go away? Does everybody have 'feels like it stuff'?"

I said "Not everybody"

To which he replies, "I knew it, nobody else in my class has 'feels like it stuff.' It's not fair!"

It broke my heart, because up until recently it never seemed to bother him. I guess we couldn't live in ignorant bliss forever, but I really need help figuring out how to explain this in terms my 5 year old understand and be able to deal with.

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Dana - posted on 06/15/2010

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I know how you feel. My son is 9 and his tics started around 5/6 yrs old. He was always aware of them from the start, although it never seemed to bother him. When he was diagnosed I told him he has TS and tried to explain it the best I could for him to understand.
A couple of months ago Matthew asked me when his tics were going to go away. So, it's just now that he's really understanding that he'll always have them. Try reading him the book Tic Talk: Living with Tourettes Syndrome by Dylan Peters. I had to request it from our library but it was worth it. Matthew liked the book because it was written by a child. I also have him in a counseling group that is made up of boys his age. Each child has an issue they are dealing with such as deafness, autism, etc. Even though non have TS, Matthew sees that everyone is dealing with something and they share feelings and ideas on how to handle things that are bothering them. He loves going to the group! Hope this helps. Your son is right, it's not fair, and it sucks (to put it bluntly), but my husband and I keep telling our kids that life is what you make of it, do your best and keep your chin up. Things always seem to work out somehow.

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