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Some time ago I posted here for those who are dealing with Tourette Syndrome about a really valuable bit of advice from Lara on BrainTalk.

 

Well, Lara has reposted those words of wisdom and so I felt it would be good to link over to them again.

 

I stress that this is specifically for those who are dealing with Tourette Syndrome

 

I hope that these wise words will help to reduce the stress.... and encourage those that have felt despondent........ to help you see beyond the tics

 

http://neurotalk.psychcentral.com/thread1486.html

:)

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  • 4 years later...

bumping this up for those struggling with acceptance of TS tics

 

here is Lara's post, which I know she wont mind me copying here:

 

Just want to share something with you all, please.

Sometimes I find it hard to express myself on some of the threads. I hear you but I don't always know how to get across how I feel.

 

People with TS tic. It's OK!

 

Sometimes some tics can be self-injurious or problematic, that cannot be denied. Some tics interfere with all manner of things, like reading, writing, walking, breathing, talking etc. etc. etc., (yes, I know) but the majority of the time they are JUST tics.

 

I don't even notice people's tics much anymore. I know this might sound most peculiar to some people, but I also find tics of people I know very well, quite endearing.

 

People tic when they are relaxed. People tic when they are stressed. People tic when they're driving. People need to feel they can tic freely and not feel as if they're being watched, or being studied. It feels good to let it out. People tic 'cause they gotta tic!!!

 

My son sure has bothersome ones but they are only bothersome to ME when they are dangerous or are causing him grief for some reason or another. I think the most grief he faces is from people who don't seem to just see him as _him_ anymore. They see his constant ticcing and it's as if they negate the existance of his 'self'.

 

Every single day I am reminded how comfortable home is for my children. That's because school, for example, causes so much build up of unreleased energy. Kids and staff at school, despite education, still don't see past the tics. They don't see past how much my children have changed tic-wise since they were in Year 1. They don't look!!!

 

I'm not denying that tics can be of concern. I'm not denying that tics can be a right pain. I'm not denying that tics can really affect some people's quality of life. I'm not living in some unrealistic place where I deny the concerns and the pain these _can_ and do present. Believe me, please, I know. However, I think we need to understand in our own minds, that there are many more things that can cause more distress to a person than tics.

 

We need to start with ourselves. Start at the source. Change the way people view TS from here. I truly empathize with you all who are struggling with this in your young children. I have struggled, still do struggle, and will struggle in the future with some issues. I think the greatest thing we can all do though, is to look BEYOND the tics. Hey, maybe the rest of the world might get the same idea!

 

Your children's tics are just part of the tapestry of who they are and who they will become... just a tiny part.

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Thanks for posting that. I really needed to hear that today. I am always worried about what other people think. Instead I need to only worry about my ds. He tells me all the time Mom don't worry about my tics am ok!! I need to learn from my 10 year old.

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Thanks for posting that. I really needed to hear that today. I am always worried about what other people think. Instead I need to only worry about my ds. He tells me all the time Mom don't worry about my tics am ok!! I need to learn from my 10 year old.

 

 

It makes me smile to see your son says that. mine...not so much.. :( I know he hates his tics and he hates when we have to mention them. he's 10 as well, and I can see that he is starting to understand it all, but he feels like 'why is this all happening to him', and he says that. It broke my heart the other night when he said, 'I feel so embarrassed when I have to make my noise in front of everyone'...

 

Really its not as bad as 'he' percieves, I know that it is not a social issue for him, and his friends and the class just kind of go with it, and I think he can control some of it. but I know he feels it inside and knows that he is the only one doing it. This is what makes me wonder if I might hve to try a med at least for the vocal part, altho, not sure if there is one......... :huh:

 

sorry to be a downer, I know this was meant to be an uplifting thread, but, that's my story.

 

Faith

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((((Faith)))))

 

I dont think the post is suggesting that we just sit back and not do anything, especially when the child is being negatively impacted by the tics

 

It is more written from the perspective of people who have a clear TS diagnosis where, nomatter how one can do stuff to try to help, whether meds or natural treatments, inevitably there will still be tics.

 

that is why I stressed it was written specifically for those dealing with Tourette Syndrome.

 

as you know, when my son was newly diagnosed and things were really bad, we did try meds, and sadly things got worse, not better. The combination of his supps, diet, acupuncture and removing triggers has worked wonders in bringing him from severe to mild TS/OCD. However, one of the biggest hurdles for ME to overcome was acceptance that people with TS tic. Once I reached that point, it made life a LOT easier on him especially, and on me.

 

that really is what the post is about...realizing that we should do all we can to make things as "better" as possible....but with TS, we simply have to accept that there will be tics, and not let our obsession with trying to "fix" them cloud our vision of who our children are.

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