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What is the hardest thing about having TS (+)

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  • What is the hardest thing about having TS (+)

    Hi, I am Crystal and I am a mother of a 7 1/2 year old son who has TS+. I was wondering in your opinions, what is the hardest thing about having TS(+)? I would like some understanding about how it personally affects kids and teens. I guess I would like to kind of see what the future may bring to my son.

    Chase is currently not on any MEDS. I am waiting until I talk to a psychiatrist who specializes in TS before making any decisions. He was diagnosed with TS, anxiety disorder, ADHD, and Learning/language difficulties. This was in March 2007.

    Thanks for any input on this subject!!!
    CRYSTAL

  • #2
    Re: What is the hardest thing about having TS (+)

    I've had TS since i was 7 also ocd and learning disorders. Kids deal with TS diferent ways, but i'd have to say the biggest challenge for me growing up was fitting in with people. I had very few friends it was teh 1 thing that was easy for kids to pick on. My learning disorder also i needed special classes in which everyone would make fun of the kids in there. That was my biggest probelm just trying to get kids to understand it was something i could not help. Which over time brought my self esteem really low and made it harder for me to cope with having the TS. But all kids are different some kids may not even have any troubles with it. That was just the challenge i went threw with it. Also the thing that helped me if maybe you will ever need it was a group therapy kinda thing for other kids with TS thats what helped me to get threw everything and learn how to fit in better with it. Hope everything works out for you

    Jessica

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    • #3
      Re: What is the hardest thing about having TS (+)

      Thanks for answering this Jessica. My son doesn't have many friends either. He hangs around with 2 kids for any length of time. Anyone else and he's frustrated and annoyed after 10 mins or so. One of the boys he hangs out with is 3 years older than him and is sympathetic about Chase being different and I do believe his mother talked to him a little about TS. The other boy is in Chase's class and he is a loner also. I think they connect because they are different. I am glad Chase has these 2 friends in his life, which only happened over the past few months.

      I am worried about him getting teased. I have told him that if anyone is teasing him that he should tell his teacher. His school is well aware of his problems and they have been really supportive. The recess supervisors are even encouraging Chase to socialize during recess.

      I appreciate you sharing you info with me. It kind of gives me an idea of what Chase's future may bring.
      CRYSTAL

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      • #4
        Re: What is the hardest thing about having TS (+)

        Hi

        My oldest son is now 15 (diagnosed at 9) and over the years he has had a few close friends/playmates. Now as a teen he still has 4 people he spends his time with whether at school or online through chatting or playing web based games. Two are guys he has met through school and two are guys who have TS. He tends to connect with those who understand him and those who share the same interest in computer games. He has met one of his friends with TS through this forum and the other through our support groups.

        I struggled when he was younger with why he was having so many issues with not keeping friends (pre-diagnosis) but I discovered his symptoms caused him to have the attitude "my way or the highway" which I can relate to because I was described the same way by peers and co-workers over the years. Increased self-awareness was how things changed for me and that is what I work on with my boys. I coach them on how their words and actions impact others because they never pick up on the social cues such as facial expressions and body language...TS should be classified as a non-verbal disability.

        I believe once our kids can internalize their symptoms and can figure out what they want and need, they can sift through real friendships and you will find they will have true friends who stick by them. I have experienced this in my relationships and I have been watching my son figure things out.
        Janet

        TSFC Homepage

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        • #5
          Re: What is the hardest thing about having TS (+)

          I struggled when he was younger with why he was having so many issues with not
          keeping friends (pre-diagnosis) but I discovered his symptoms caused him to have
          the attitude "my way or the highway" which I can relate to because I was
          described the same way by peers and co-workers over the years. Increased
          self-awareness was how things changed for me and that is what I work on with my
          boys. I coach them on how their words and actions impact others because they
          never pick up on the social cues such as facial expressions and body
          language...TS should be classified as a non-verbal disability
          Are you my long lost twin? This sounds exactly like my situation and I am more aware about how I appear. I am now trying to be a positive role model which is hard at times but can do it. I appear calmer and when I am ready to blow up I will leave the room and have my own "time out". That way I am not blowing up at the kids.

          I just started to read "The Explosive Child" by Ross Greene. I heard it was a good book to read.

          Thanks for posting... all these posts are really helping me out.
          CRYSTAL

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          • #6
            Re: What is the hardest thing about having TS (+)

            I appear calmer and when I am ready to blow up I will leave the room and have my own "time out". That way I am not blowing up at the kids.
            Crystal it is really funny that you stated this because if you read through any older threads about explosive behavior or moods (I am not sure where) I shared the same best practice. It is funny -peculiar not haha- that many of us have so many things in common.
            Janet

            TSFC Homepage

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            • #7
              Re: What is the hardest thing about having TS (+)

              LOL!!! Yes it is amazing how all of us sound alike. I guess that's because we all understand each other and know how it feels to be challenged as a parent.
              CRYSTAL

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              • #8
                Re: What is the hardest thing about having TS (+)


                I hate just standing out.I have had ts seens I was 4 so I dont know what its like to be normal and to fit in.

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                • #9
                  Re: What is the hardest thing about having TS (+)

                  My four children (5-13) have TS and TS plus, as does my husband. In speaking with them over the years, their most challenging moments tend to be:

                  - explaining TS to friends and worrying about their reactions
                  - giving up, even temporarily, enjoyable activites due to tic interference (piano)
                  - the way tics/OCD can permeate even the simplist activity and make it frustrating (brushing their teeth a certain way or number of times)
                  - the sense that no matter their accomplishment or unique qualities, they are the "child (or adult) with TS". They feel their moments in the spotlight are overshadowed by their label ("can you believe the kid with TS... got a goal, aced the exam, climbed the mountain....")

                  Luckily, they have each other. I have seen their outlooks change as they mature and open up about their experiences. They are lovely children in general.

                  Linda

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                  • #10
                    Re: What is the hardest thing about having TS (+)

                    I think what my son finds most difficult is the fact that sometimes his symptoms will make it so he is unable to take part in some things. It seems to be most frustrating for him if he was able to do something in the past but must forgo the activity another time due to the waxing and waning of his symptoms. When this happens he will express his anger and wishes he didn't have TS.

                    Another thing he expresses difficulty with is when he is given extra help that will set him apart from others. He had an aide in school from grades 3 - 7 and did not always like it. Especially in grade 7 he often wished he was "just like everyone else" and really seemed to resent having the aide.

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                    • #11
                      Re: What is the hardest thing about having TS (+)

                      my son, with TS+ also has a hard time with friends. He actually seems to be okay with it though. He prefers to have only 2-3 friends in his circle. He doesn't want to go to birthday parties and is just fine with having his own with just family. I think the hardest part for me these last few years has been trying to encourage my son to enjoy life with his Sensory Integration Dysfunction, but it is VERY hard for him. He cannot enjoy even going out to dinner because of the noise and smells, as well the movie theaters are out of the question. It has restricted his life in A LOT of ways...

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                      • #12
                        Re: What is the hardest thing about having TS (+)

                        I have found this is quite common that our kids with TS prefer to have 2-3 in their group of friends. Often times it is correlated to the symptoms of their disorder. Those who are more chatty and sociable -the right brain kids-have lots of kids attracted to them... others who are more black and white and logical often have smaller groups.

                        When our kids make a friend, they are loyal friends. Have you found that with the kids he does spend his time with?
                        Janet

                        TSFC Homepage

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                        • #13
                          Re: What is the hardest thing about having TS (+)

                          I'm one of those people Janet described, having a small group of friends that I am loyal to and who are loyal to me and a good support group.

                          I can easily say my most difficult moments growing up and even still nowadays in my adulthood refer to socializing. I was teased as a child, so I didn't get many friends who didn't judge me or teach me how to get along with people. They simply tolerated me to the point where I got so annoying (behavior wise, not tic wise) they simply left. All the way up through HS I suffered a lack of social skills, and until I met my best friend of 9+ years and going, no one had directed me on how to behave and what to not say at certain times. All the people I knew and tried to be friends with just ended up ignoring my uneducated opinions and frustrations, or getting angry with me and left me feeling guilty without really knowing how to solve the problem.

                          As an adult, I'm much better off and although I still say things that might not be appropriate at times, I at least now know why I get looked at wierdly and can adjust my comments and opinions much better than before. Also, I have a much better support system among friends than I did before, so this has made my transition into adulthood that much easier.

                          Despite all that, I still have defence mechanisms that arise when I think I'm being ignored or not given fair chance to voice a concern or comment due to my childhood years of teasing. Those will never go away, as they've been engrained into my subconcious and I will have to deal with the emotional scars left from my childhood as well from social rejection.

                          But fear not, I am still here and I am surrounded by awesome friends and family whom I wouldn't have if I hadn't gone through all that. So there's hope for people with social skill problems yet! HUZZAH!!
                          Last edited by Poplover01; July 18, 2007, 02:38 PM.
                          Marisa

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                          • #14
                            Re: What is the hardest thing about having TS (+)

                            I feel that the toughtest things about TS is the following

                            -Having people make fun of you because of tics or because of you seeming "weird"
                            -The associated disorders (OCD,ADHD etc.)
                            -Having to answer someone when they ask about your tics and trying to come up with a logical response that they would understand.

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                            • #15
                              Re: What is the hardest thing about having TS (+)

                              hi I guess I am the person that janet mentioned a few years ago I find me I find that finding good friends was hard when I lived in quebec because little people shared a common interest with me and usually called me names and stuff and I only had a few though since I moved to hanover in ontario I have met some great people I find that with tourettes one of the best things to do is to inform the class maybe have a teacher or school guidance counceller explain it to the class and when you tic the best way to react to it is to not react at all just act like it did not happen and over time they may go away I find stress causes tics for me

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