How parents cope?

[Vanessa2]

I just read another post which mentioned dealing or not not dealing well with their child's tic. I admit, I don't believe I deal very well and wish I could find a more positive outlook. So, if anyone is interested in posting their thoughts positive or not... Maybe it would give some of us struggling parents a different perspective.

thx

[Lynn777]

Hi! Sorry you are not coping well. I Probably shouldn't even respond because what you need is help & positive support. I too do not respond well to my sons tics and basically cope with earplugs, wine, music, Valium & lots of psychotherapy. That said, I do believe at this point in time the tics are about 80% my problem & 20% his problem. He is rather un-fazed by them & they have very minimal impact on his life. He is happy, active, kind hearted & smart. If I could concentrate on that & stop looking at him as one big walking, talking tic, I'm sure I could see this situation differently, move on and cope better. Perspective is huge. So is prayer & faith (in my humble opinion)

 

I know there are other's that will be more helpful. I understand how you feel, you are not alone & hopefully we will all cope better in the very near future!

 

Beat wishes,

Lynn

[Chemar]

I have mentioned on other threads that the best cure for my attitude toward my son's tics was when a friend basically made me look at a forum for parents whose kids had terminal illnesses.

 

another was something written by a friend that I quoted before, but bears repeating

 

 

It's OK To Tic

 

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.

 

 

 

and

without prayer, I really don't think I would have coped!

[CSP]

This experience will always leave you a different person then before, and just letting go of what we thought our child would grow up to be like. Not settling for something less, just different.

 

God knows we all cope with pain differently, I am the worst person in our family that deals with this, but I also see everyone else would give up on him and let him eat and drink all the things that would be really bad for him. So I look at this as I am the one doing all the work keeping him healthy everyone else just goes on living like he is just fine. That is actually a good thing in our house because as the mom I know I will always feel their pain no matter what that pain is. I see that my son always comes to me when he is not feeling well, even tho he loves his dad very much, he wants me to take care of his needs. He may argue with me over a vit. but thats ok, no one else would do this for him.

 

Do I still lose is when he has a bad day or week, (YES) I just do what I can to make sure he feels less of my worry. I now can enjoy the fruits of my labor as

my husband and I receive comments from men in our community that adore our son. His boss says he is a hard worker, the 25 year firefighters would love for him to have their back in a fire, our parish priest blessed and gave him a medal of the patron saint of firefighters on All Saints Day.

Why??? Is it because they can see and hear him ticcing and marvel at how he copes and still keeps a smile on his face. I really don't know... but is sure keeps me going.

 

He is 17 and at 12 yo when he first exploded I never would have believe this is where he would be. I would not cange anything on how I coped because it is all in God's plan for my son. I may feel like crap and think I did not handle something the right way, but I know there is always some "GRACE" out of this suffering.

One of the best reasons for looking at this as a blessing is to be right there with you all felling your pain, praying for you, and just knowing their are others out there that suffer more, and I have great compassion for them too that I may never have had if life was just a piece of cake.

 

cp

[KileyAnn]

My husband has Tourettes and I have to say that it has shaped his whole personality in such a positive way. I truely believe that he would never be the amazing, kind-hearted, sensitive, caring person that he is if he did not have TS. He is the most handsome man, has a GREAT job, and we have 2 absolutely beautiful children together. He has everything in the world going for him. Yes, he tics, but he is such an amazing person that everyone in his life just sees past it. He had hard times when he was younger and his mom was probably feeling like most of you are on this board. With lots of love, security at home, and by finding something that he was interested in and good at (sports) he got through the tough times. He told me that when he went to college he made a life changing decision. He decided that the tics will not interfere with his life anymore. He was done giving them any attention and was going to live his life to the fullest. It worked for him! He is 33 years old and the happiest person I know! I think everything happens for a reason and I just know that he has TS because it has made him a better man. I know it seems so hard to believe righ now but I promise you all that everything will turn out okay.

[Chemar]

It was so encouraging to read your post KileyAnn as my son, now 21 yo has shown that same attitude and gratitude for how he has developed because of TS. A stepping stone, not a stumbling block.

 

 

 

My husband has Tourettes and I have to say that it has shaped his whole personality in such a positive way. I truely believe that he would never be the amazing, kind-hearted, sensitive, caring person that he is if he did not have TS. He is the most handsome man, has a GREAT job, and we have 2 absolutely beautiful children together. He has everything in the world going for him. Yes, he tics, but he is such an amazing person that everyone in his life just sees past it. He had hard times when he was younger and his mom was probably feeling like most of you are on this board. With lots of love, security at home, and by finding something that he was interested in and good at (sports) he got through the tough times. He told me that when he went to college he made a life changing decision. He decided that the tics will not interfere with his life anymore. He was done giving them any attention and was going to live his life to the fullest. It worked for him! He is 33 years old and the happiest person I know! I think everything happens for a reason and I just know that he has TS because it has made him a better man. I know it seems so hard to believe righ now but I promise you all that everything will turn out okay.

[Lynn777]

Kiley Ann,

 

Thanks! That was one of the most encouraging posts I have read thus far. I thank you for taking the time to remind us that our kids are people and not just their tics. Reminding us that attitude and upbringing means alot!

 

You are right, at times it is hard to believe right now, but we need more posts like this to remind us new comers that it can turn out okay!

 

My greatest wish for my son is that he is happy in his own skin, if I knew that was going to be the outcome, I'd be okay. It seems that's where your husband is and that is fantastic!

 

Thank you, thank you thank you!

 

~Lynn

Edited November 30, 2010 by Lynn777

[mythree]

Thank you Kiley Ann,

 

That was such a great post to read. It is very uplifting to hear it from a persons point of view who has grown up with this and had done fantastic. Thank you for posting this. It was very nice to read this perspective.

thanks!

Lisa

[Chrisnick]

I am one that does not deal with my son's tics well either...in addition to having his tics he is also VERY CLINGY so he wants to sit right next to you, be in the same room with you at all times. So when he gets home from school he wants to be with me all the time. I try to act unfazed so that to him it seems like - it does not matter to me - I want him to feel like at home, he can be himself. sometimes tho, it is nerve wracking. The motor tics bother him more - the vocal tics bother me more - he has flip flopped so now his motor tics are more prevalent - those bother him physically the most - he comments that he hates his life because he can't stop moving his neck and head - and after all day of that he is in pain -he gets frustrated and the tears and the crying starts.. I feel so helpless. The only time he gets any peace is when he is sleeping. So I am so happy at bedtime he is at rest. I feel so frustrated because I dont know where to go next.. but we cant stop - we have to keep researching, finding doctors, trying new strategies.

 

As one post said...I think of the kids that have a terminal illness - one in which no matter what you do you will still lose your child. Things could always be worse - My son will grow up with tics - but he will grow up. We all have to be thankful for that.

 

Bountiful prayers to all of you

[Rick43]

Hi everyone,

 

As some of you know, I am 43 and have had tics all my life. I will admit very freely that I have gone through periods of having no issue at all with it to being very close to depression. I have accepted that for me I will always have it, and try my best to not complain anymore.

 

One thing I've struggled with (and still do) is admitting to people that I have it. I've done much better in the past year, as most friends and family all have heard about it directly from me.

 

I have yet to tell one person at work however, even tho everyone tells me I need to.

 

May sound silly, but I don't want to be discriminated against for things like promotions, etc.

 

I almost started telling people , but didn't because I still have faith that my diet and bontech will minimize it to the point where it's not obvious.

 

Anyway, not a perfect approach, but if nothing else, I'm staying as positive as I can that I will finally find a solution.

 

And yes, I have 3 kids (5, 3, 1) and would happily take this 10x what I have now if it meant none of them have to deal with it. But, if they do, at least I know exactly what they are dealing with and hopefully I'll know exactly how to adjust the diet to help from the get go.

 

Rick