What do you wish your parents did or hate when they do?

I could probably talk forever on topics like these. When I was first being diagnosed I felt like my parents didn't listen to me.

Before I was diagnosed my mom would scream at me to stop tic-ing and wouldn't listen to me when I said I couldn't.

When I was first diagnosed they didn't listen to me when I said I didn't want medication to "make it go away". It wasn't an embarrassment to me and it didn't bother ME.

Eventually I did need medication and they didn't listen to me when I didn't want to switch medication, or when I wanted a different dose.

They didn't listen to me when they took me to an environmental doctor who put me on such a strict diet that i lost 20 pounds in 2 weeks. I didn't want to be on the diet, but it was 'to make me better without medication'. I didn't want to do it, it was awful, and it turned out to not help one bit.

I would definitely have to say that not listening to what I wanted was my biggest issue with my parents.

What about you?

Hello i am on here to help both the promotion of your site as well as finally speak and share my life with tourette affected children and adults and parents their of. I am the only one in my family ever as far as we all know to ever be affected with tourette. I also had a troubled childhood mostly due to the unknown of this disorder by both my parents and myself and others.I feel very similar to you as far as my story goes with the exception of medication.I never took any type of medication and to this day i am against any form of civilized drugs or medicine.My childhood was very difficult but it made me what i am today and i am proud of that.I hope that anyone afflicted with tourette remembers that this is not a major negative issue that will negatively affect your whole life it is a small factor in carving your future and how you handle tough times and trials.

Welcome tavo,
I am glad that you are here and that you have a place to open up safely. I have edited your post to remove my real name. Being an online forum, users have a choice to remain anonymous. For the reason of being respectful and safely respecting people's privacy - and hopefully make everyone feel more comfortable to share their opinions I am asking that you refrain from using people's real names.

I do not mind all that much but I decided to edit it for awareness.

I will let others reply before I do - I dont want to be the only one making posts.

Thanks for the correction and the explanation, i am enjoying the dialog and listening to others talk about their experiences on here and excited to see this site grow. Excellent job setting this all up!

Hi All,

I think this site is great and such a wonderful idea and everybody should try to think of ways we can promote this site. I too had the same issues of parents not listening when I said I couldn't stop the tics, they would yell and scream, I was hit, they ever tried to embarrass me in front of others in an attempt to make it stop. My mothers favourite saying was "get a fucking grip". It was made worse by the fact that my brother had one tic which started just before my tics, but his stopped after a few months. This reinforced to my parents that I wasn't trying hard enough to stop, like my brother had done. Kids at school were horrible calling me disgusting and making fun of everything I did, even if it didn't relate to the TS. I was not overweight yet they called me fat and I later developed eating disorders. Teachers singled me out and openly told me to stop it in front of everybody in class claiming "I was giving her a headache". One girl bullied me to the extent of stealing my things and putting them in places so I couldn't find them, she tired to get me in trouble with teachers and bad mouthing me to others trying to get people to hate me even more. Many of the kids also played on my obvious insecurities and after a suicide attempt at 13 one guy said to me in front of my entire class to "go see a fucking psychiatrist you psycho" to which I remember screaming at him "go to Jenny Craig you fat fuck". Within 12 months he had lost half his body weight. I was still ticcing and wanting to die and despite seeing him around many times, attending the same parties years later we never spoke again. As my tics grew worse, I lost interest in school, which I was a very good student in the first 3 years of high school, but as things worsened, the eating disorder kicked in and the depression and insomnia increased , the desire to take drugs and drink alcohol and "give favours" to boys (i thought this would make them like me) increased and this is all I did for many years. My school work suffered because of it, I remember the only exam I studied for in the entire two years was a science exam due to wagging class, because I was going to fail and would receive no money for my report card for a D, so a friend and I bought a carton of beer (this is at age 16) and 2 packets of cigarettes and stayed up until 2 am. I arrived at school and sat the exam that next day stoned and received a C. I even did my final senior exam with no preparation (you normally sit 3 practice exams through the year, I only completed not even half of 1) I was hung over and stoned. I got a C over all with a B for one part of it.

I am a little of track here so will try to stay focused, my parents did take me to 2 doctors at different stages from age 12 - 13. Both doctors I did not tic in front of out of embarrassment. The first doctor said it was a phase and would pass and the 2nd doctor gave me allergy tests which came back clear, and after that they just gave up. Things got better when my mother left, Dad was no where near as mean about them as she was, he just chose to ignore them unless they got really bad then I would be screamed at by him and my brother. I started smoking weed with him at age 16. This helped my sleeping and the tics a little. Dad is the type of person who thought it was easier to have the two cigarettes and cup of coffee I demanded every morning before I would even get out of bed, to try to get me to go to school, rather than give me proper discipline. He and my brother refused to believe I had TS for almost 2 years after I was "diagnosed", which I initiated myself at age 21. Although I am not formally diagnosed, I have been told by a doctor that in his opinion I more than likely have TS, but it would take longer to determine it for sure and because he was a public system doctor it was out of his realm because he was not allowed to see me more than a certain amount of times.

My father is not a bad man but he has no understanding about this type of thing and no desire to learn. He does not realise how it has effected me despite the amount of times I have told him. Lately I have been bringing it up more and more and he seems to get a slight interest in it at times but I will need to accept that he will never react the way I desire him to and I am trying to let go of the resentment I feel because of this.

your situation was almost the same as mine except my parents dont cures like yours did. But still my dad and sister did the making fun of me thing. My mother tried to be very supportive but did not know what was wrong. My family was a yelling family. My mother and father fought almost everyday. My wife thinks this had something to do with me developing TS. I sit and wonder could this be true. I am not 55 and my tics are still here and some are getting worse. I hate this stupid desease. I should not have to explain myself at this age. but i am glad that I can help kids of all ages. we must all stay in touch and see what we can come up with.

your parents dont cures?? sorry i dont understand? do you think your wife is right? i understand that some psychiatrists say that people develop tics as a way of manifesting what they cant verbally release, or whatever, if that makes sense, but to me this wouldn't be TS it would be something else...a manifestation... i dunno, i don't think i'm really making sense. i hate TS too. i wish there was some way to get word out there what TS really is, not just the exaggerated version people seem to think it is then laugh at the idea that's what we have because we can "control" it at times. people don't understand what it takes to suppress them. *sigh*

ive been seeing someone for a few weeks now and was doing really well at hiding them from him, but started to slip up the more we hang around each other. he asked me about them the other day, but he did it in a horrible condescending way in which i refused to tell him. he asked me 3 times and each time i said "look at the way you are saying it, it doesnt make me inclined to open up, its not making me comfortable to do so". now im worried that i lost my opportunity to tell him at all coz i have real issues at telling people i am intimating involved with because i feel they are sexually a turn off. . could not sleep all last night thinking about this. the thing that annoyed me the most was he has jumpy leg syndrome, are men so ignorant they can't work out things are often deeper than they seem. even after the first time i refused to tell him because of the way he asked it, he still asked it in the same way the 2nd time. grrrr. this is really depressing me.

Luckily I never had issues with my parents with regards to my TS but that's not to say that I haven't had issues with people I go to school with in regards to this disorder or my husband's family. My parents have always been understanding about TS because my brother also has it so I felt safe in my home environment. At school it's a different story, no one has said anything to me but I know what they've been thinking. Last year, before I started taking Abilify to curb my tics, I used to tic a lot in class and although the friends that I have were understanding about the situation I could tell that others that I didn't want to explain my TS to were suspicious that something was going on and were making their own assumptions about me. Luckily something really good came out of this suspicion. I made friends with someone else who has TS. We talk quite frequently about our symptoms and how she struggles with "controlling" herself while in public, which most of us can understand completely.

Personally, I think that some people just take time to get used to having an anomaly, like TS, in their lives, others are just plain selfish and there are those few people out there who genuinely want to understand what TS is all about. Just some thoughts of mine

Jom I really feel for your recent developments. It feels like you are trying to find reason and compassion in unreasonable incompassionate people. Call me a romantic but anyone worth spending your life with would be accepting of you and others. I really don't know how to bring it up in a romantic setting its definately something I also struggle with- I made a seperate thread about it in the past when I had started dating my now ex... but I do know that I have told classmates, teachers, family, friends, and coeworkers about my ts and I can say that everyone worth knowing was supportive and accepting.

Again call me a hopeless romantic but I would want my significant other to be kind hearted about all things and to all people, including me ofcourse. Maybe you are seeing the wrong people. I was lucky that my parents were accepting ... to me anyways. I found out like 10 years later that my father took the diagnosis hard and blamed himself for some reason.

Wow! As a mom of 2 sons with TS reading some of these posts make me cry! I know that sometimes it can be very hard on the parents too. We feel like we have failed at the one thing we should be able to always do....protect our children from anything bad, physically and emotionally. I have always tried to understand my sons knowing no matter how much I try I can never fully understand a moment of their everyday life. I wish I could understand a moment in my sons lives to feel what they feel, but sometimes I wish they could feel a moment in mine too. I read some of these young people on here and their problems and i wish i could fix all of them, to be there for all of them, but i guess all i can say is hang in there. There are good people out there, good teachers and girlfriends and boyfriends who if they can take a moment to get to know who you are, not what you have been diagnosed with, then they will see that, to quote the TS slogan, You may have tourettes but touretts dosent have you!