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  • Daughter with tS

    Hi I am from Ontario and have a daughter newly diagnosed with TS and we are pretty sure she has ADHD with it. We are seeing Dr. Pearce in TO but we are just starting the process.
    I am a single parent of 4 and I also suffer from severe depression and I am having an extremely hard time coping with all of this. Right now I am struggling with what is TS and what is normal kid stuff.
    My child also has seperation anxiety and is not able to even go stay overnight at her dads and trying to explain TS to him is pointless because he really doesn't get it.
    Another problem is trying to explain to my other kids that she has a problem and that she is not just a spoiled brat (3 older brothers).
    To add to all of this she is going thru puberty at the same time and is very messed up.
    Like I said we are new to this so if anyone has any suggestions or info please please let me know.

    Thanks Jams

  • #2
    Daughter with tS

    Hello Jams and welcome to the TSFC Forum.

    Our friendly Forum volunteer staff and members are here to help you through your discovery process with information and support.

    Being overwhelmed at this time is normal, so you need to take the learning process one step at a time.

    We can help you sort through some of the options you might have and provide you with some tools to help your daughter.

    The Forum contains a wealth of information, so feel free to read through the postings, where you can search for specific topics by using the Search tool at the top of the page.

    You can also post a reply to any of the ongoing discussion if you need more information on the topic under discussion or post a new discussion of your own.

    You may wish to contact and join the local support group in Toronto.

    Have you discussed the diagnosis of Tourette and the stress it is causing you with your own therapist who is treating your depression?

    Are the other children in your family old enough to understand that the manifestations of Tourette are involuntary, and that the tics and other behaviors are not attention seeking behaviors?

    Have a look at this Forum posting which can be a stating point for your information on Tourette. You may wish to print out the information brochure on What is Tourette, referred to there, and use it to acquaint your family with what Tourette is all about

    We'll be very happy to help work your way through the journey of discovery of Tourette, so go ahead and ask all your questions here.

    Thanks for joining The TSFC Forum and we'll look forward to continuing the conversation.
    Steve
    TouretteLinks Forum

    Comment


    • #3
      daughter with TS

      Thank you for answering my post so quickly.
      My boys are 14,20 and 21. My 21 yr old lives with his dad and my 20 yr olds girlfriend lives with me also. I have alot of info that I have given to my 20yr old and he and his girlfriend kind of looked thru the info but still think she is faking or playing on it. My 14 yr old also thinks she is just a brat that I let get away with everything. I must also say that since we were diagnosed I have seen things in my 14 yr old that make me question if possibly he has some symptoms (whistlings strange noises and jekel and hyde anger ).
      My 20yr old also has learning disabilities and a very bad temper so right now I am dealing with not only her problems but how my boys react to her. And I don't know how to explain to everyone in my family, friends and school how to deal with this, I get so many dirty looks like ya right your crazy she is just a bad kid and you should punish her or she just wants attention.
      I am also finding it very hard to explain to my daughter that what she is going thru has a name and we will do anything to help her cope but we are so frustrated because we are new to this and she is so mad and angry all the time.
      People are so cruel and mean because one of my daughters tics is spitting and she has had parents yell at her for it even though they have been informed and the kids are the worst because my daughter has been actually SPIT ON a few times.
      So I am trying to cope and help my daughter cope through this but any suggestions would be greatly appreciated.

      Thanks again Jams.

      Comment


      • #4
        Daughter with tS

        Jams,

        I don't believe you mentioned the age of your daughter who has been diagnosed with Tourette.

        I am also finding it very hard to explain to my daughter that what she is going thru has a name
        This is probably the most important part of assisting your daughter understand and come to terms with her disorder. The greatest frustration for a person with Tourette is thinking they are the only one in the world doing these things. Without an understanding that the disorder is involuntary, they come to believe they are somehow weak or inferior.

        The key to her being able to successfully deal with her Tourette and face the challenges of growing up, forming relationships and a making s career is for her to gain self confidence. This confidence will come from understanding her Tourette and knowing she has the support of her family and friends.

        Perhaps your therapist or physician can of assistance in informing/educating your adult children, provided they are willing to listen, to help them understand that Tourette it isn't just "bad habits or behavior", "stubbornness", or "drama".

        Could there be some denial on their part?

        "A member of my family couldn't possibly have something like this!"

        Could it be fear?:

        "I don't want this to be true so I refuse to let it be true."

        Or, could it be about power struggles?:

        "She thinks this is a problem and I hate/am angry with her so I'll refuse to accept this" .


        Family supports family in time of need.

        Would it be different if the situation were reversed or if the need for support was in connection with a medical issue like cancer or diabetes?

        People are so cruel and mean because one of my daughters tics is spitting
        This is where a pro active approach with a pre rehearsed and pre planned strategy can help prevent these reactions from other parents.

        Some parents have found it helpful to role play an explanation of Tourette with the child with the diagnosis. Using the information referred to earlier in the FAQ's on the TSFC web page and perhaps printing the "What is Tourette Syndrome" brochure and handing it to uninformed individuals can ward off problems before they start.
        Steve
        TouretteLinks Forum

        Comment


        • #5
          Daughter with TS

          hi this is jams daughter and i am 11 years old for some reason i feel anger and i have to let it out on my brothers and they always say that tourettes are not real and they always hurt my feelings do you know what i can do about this?please reply to me because i am in desprit need of help!!!please help me!!!my mom and i thank you for all the help you can give us!!!



          ~thank you~

          Comment


          • #6
            Daughter with tS

            Jam's daughter,

            Welcome to the Forum, and thanks for adding your remarks.

            Those of us who have lived with Tourette have encountered situations where people have been intolerant.

            It's understandable that you would feel frustrated and angry. Your challenge will be to provide your brothers with information about your diagnosis.

            Try explaining that your doctor has made a diagnosis, and that you are not making this up. Show them one of the brochures on Tourette so they can learn that it is an involuntary disorder in the brain.

            This doesn't mean a person with Tourette is crazy but rather the wiring circuits in the brain are different from most people.

            Maybe they don't realize they are hurting your feelings by their teasing. You might want to say something like, "You know, it huts my feelings when you ........".

            It is obvious your Mom cares about you very much and is trying to get information to help your family deal with this new information.

            You may find it helpful to meet other young people diagnosed with Tourette.

            We have a section on the Forum where young people can share information, plus your Mom may want to check out the local TSFC support group in Toronto.

            What's most important to understand at this point is that you are not alone. There are thousands of people with Tourette, and most enjoy normal lives.

            Feel free to join with your Mom to ask your questions here, where we can share our experiences with you in the hopes that this information will help you deal with your Tourette.
            Steve
            TouretteLinks Forum

            Comment


            • #7
              Daughter with tS

              Hi Jams

              Welcome to our BB and I am glad you posted to share your story. You will find many great people online with us who can share their strategies and stories. The forum has many topic threads so have a read through in areas that trigger your interest and feel free to post a reply to any topic that cathces your eye. We love when old topics become active again :D

              I would suggest that you take Steve's advice and get in touch with the local chapter of the TSFC. I have TS but was only diagnosed through my son's diagnosis. I believed I could handle it on my own and then I realized I needed support... someone face to face to talk to who could relate to what I was going through. That is what the local TSFC did for me... unfortunately it took me almost 7 months to get the nerve to contact them... it was the best thing I ever did.

              Please stay connected with us and keep us posted and make this a regular place to visit.
              Janet

              TSFC Homepage

              Comment


              • #8
                jams

                Thank you so much I need all the help I can get. I will continue to use this BB for info and to learn from other peoples experiences on how to cope.

                Thanks again

                Jams

                Comment


                • #9
                  Daughter with tS

                  I wanted to say Hi to you Jams!! and to your daughter.

                  There's a video, from HBO, called 'I have Tourette's, but Tourette's doesn't have me". You guys might find that helpful to watch and/or show people. here's a link to a site for more information and for ordering.. http://www.tsa-usa.org/news/HBO_order_DVD.htm


                  You guys sound way overwhelmed and I can't blame ya! It can help to break things down into smaller parts and work on them one at a time, usually starting with the one that is causing the most impact. Jam, you probably can't change your sons' opinions and behaviors right away, so I'm thinking it would be best to start with your daughter. Although not a symptom of TS, she posted that she's having anger issues and feels the need to take it out on her brothers. This may be the best place to start. If she can learn to redirect her anger elsewhere then they won't feel so defensive and may come around and even wish to help.

                  Maybe the therapist could help with some anger management techniques? This could be helpful too when out in the world dealing with non-understanding people.
                  Meditation was a favorite of my boyfriends. I like working out at a gym. Since working out is also great for depression, maybe you guys could have some mother-daughter bonding by working out together, or walking every afternoon.. ??

                  I hope as you post more, we're able to come up with more ideas for ya!
                  ((((Hug))))

                  Comment


                  • #10
                    Daughter with tS

                    We also got the DVD "I have Tourettes" for our 9 year old daughter and plan on showing it to her class later this week. It was great for her (and us) to see other kids with it since we don't know anyone else who is affected. This was very helpful and my daughter watched it over and over. It is great to see these kids overcome (like your daughter surely will also) their obstacles and the kids they are underneath.

                    Comment


                    • #11
                      Daughter with tS

                      Hey Jams and daughter!

                      My name is Steph, and I am 17 years old and have TS. I think it would be a great idea for your daughter to have her own username, which will make it less confusing as to who is typing (I think Steve mentioned this before possibly). The Youth section is also a great place to get advice from other teens around your age. I have a sister who is 11, and I was 11 not too long ago, so I am always here to help you out if you have any questions. It's also a great place to just talk about what you're struggling with, you'd be surprised how many people have gone through the same stuff as you! I know I was when I joined the forum back in the fall. Hopefully you'll be joining soon, I'm sure the other teens would love to talk to you as well!
                      Steph
                      ~be a miracle~

                      Comment


                      • #12
                        Daughter with tS

                        any updates? I'm wondering how things are going, if things are improving, and if so, what worked???
                        Hope everything's OK!!! (((Hugs)))

                        Comment


                        • #13
                          Daughter with TS

                          Haejinn
                          Not much to update at this time we go on the 15th for pyramid test and to discuss seperation anxiety hopefully we can get some meds that will help with this. Meds she is on now is doing nothing and tics are getting worse.
                          Some stress has been lifted cuz my older son and girlfriend have moved out but tics and moods have not improved yet. Will keep in touch.


                          Steph
                          Nice to here from you every little bit of info or suggestions helps.
                          As for my daughter she has lost interest for now, so when I mention to her that she should go on the youth forum and talk to people her own age she says no not interested right now.
                          I will continue to give her info from this BB and hopefully she will join the youth forum with her own username soon.

                          Thanks again

                          Jams

                          Comment


                          • #14
                            Daughter with tS

                            thanks for the update! I'm glad to read that at the least, some stress has been lifted and the doctor appointment is so close now. (((Hug)))

                            Comment


                            • #15
                              Daughter with TS

                              Bit of dissapointment our DR appt has been cancelled due to DR being sick. We go back on Apr 5 now so it is a bit of a setback.

                              Watched a very good show on ABC last night called miracle workers and one story was about a 19 yr old girl with severe TS it was so sad but a miracle happened with a new brain surgery she was completely cured and now leads a normal happy life tic free.
                              Totaly awesome show.

                              Talk to everyone later.

                              Jams

                              Comment

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