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Another EA looking for help..

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  • Another EA looking for help..

    Well Hello all !

    First may I start by saying you have a fantastic site here. I have spent quite a bit of time floating around reading some VERY interesting threads. I am currently working with a nine year old who has complex motor tics and one maybe two (mild) vocal tics. She is such a ray of sunshine. I felt the click with her right away. In the short time I have been working with her I have watched helplessly as she has escalated twice. I have been taking her out of class 2-3 times a week. Sometimes we run school errands, sometimes we just hang out and talk. It is my understanding that she is pretty new to this (under a year) so we are not sure of what is to come. She has a FANTASTIC support system both inside and outside of school. She is very lucky. What I was hoping to find was some strategies that have worked for other people to help her "take a break" from her tics. When she plays a musical instrument she barely ever tics ( unless she is really stressed or tired). She seems to really enjoy the "break" from the tics. Other EA's I have talked to have suggested playing different types of music while she tries to work. I haven't had the chance to try it out yet but plan on it soon. If anyone out there has any activities or things they or their loved ones do to "take a break" PLEASE let me know. She is going through a really rough patch recently and hasn't been sleeping well if at all. When she can come to school in the afternoon, she is still her resilient bubbly self, all smiles, but I can see she is soooo tired and trying so hard to keep it under control. Then I may not see her again for 4 or 5 days. It breaks my heart. Anyways, I would really appreciate any ideas anyone may have that might help. Thank you so much for your time.

  • #2
    Re: Another EA looking for help..


    Welcome to the forum and hats off for finding us.

    What you are describing I have lived through. As you may understand tolerance levels are lower in general for those with TS since everything just seems more intense. If she has TS+ that just complicates the situation.

    Sleep and rest patterns make a big difference on the tic and stress or anxiety. The emotions can build from within just by not being able to "perform" like others and the spin out begins.

    Sometimes children can't rest well due to stresses or confusions about the new diagnosis. Sometimes the med's can cause some problems.
    Sometimes children just don't understand enough about the TS and become more stressed by trying to control it or suppress it.

    Complex motor tics can be painful to experience and create even more stress since you would like them to stop.
    What you are seeing must be due to a trigger of some kind. The key is to find the trigger, then learn how to manage it. Has anyone suggested getting an OT? You can get the school involved to provide some services that could help. Often as parents new to this topic we just do not know what is available for our children.

    Has anyone worked with her to explain what TS is and how it is alright to tic?
    Her family maybe having some problems dealing with it but sometimes we forget the children have their own road to travel too learning how to cope.

    Music is a good start, music she likes while doing some art work might help.
    See if she likes to paint, draw etc and get the supplies together with her. Build her self esteem despite the tics.

    Bike riding, swimming, basically repetitive motion sometimes helps. The key is some things work for one while they don't work for others.

    Mine likes reading, computers, video games and sometimes this helps or the tics become heightened.

    You may also want to check with the teacher to see how she is doing before getting her. In our case my son's tics would increase when he had to leave the classroom or stop what he was doing like a project in class to meet with someone. Having that option made a difference for him and did not single him out in front of the other class mates.
    It is like changing gears and this can be hard with someone with TS or TS+

    Please keep us posted and may I suggest you contact a chapter near you for additional resources too. Sometimes when a child meets someone with TS they learn how to deal better and the tics improve. You may be able to pick up some good material on the subject also.

    I hope you consider offering this forum to her parent(s) to visit now that you have found us. It has made a big difference for our own family.


    • #3
      Re: Another EA looking for help..

      Hello again,

      We definately know the latest trigger. Her teacher has just gone off on maternity and there is definately stress over the new teacher. The new teacher is very nice and is catching up quickly on the situation. I do know my student has at least 4 doctors that she is seeing now, although I haven't had a chance to figure out what kind of doctors they are. As for her parents, they are right on the money and supporting and exploring every avenue they can find. Being so new to the situation I don't think I'd feel comfortable "putting my 2 cents in" just yet. I haven't even had the chance to meet with them yet. I am just catching up to the loop in the school and keep in close sontact with her team members there. She is just starting to question what is happening to her, it is all still pretty new and now I think she is coming up to the time where she is ready to explore what is happening to her. There is obviously some concern about her exploring this on her own. At her age it is unsure how she will take some of the information she will find. She may feel prepared with reading the possible tics she [I]could[I] develop or she could stress herself out more thinking of what may lay ahead for her. It's a gamble. Thankfully I have been instructed to leave that exploration to her and her family and I will simply ask her to bring me a copy of the things she learns as she goes. Thanks for the art tip, I'll try it out and se what happens. By all means keep the suggestions coming.

      Thanks again


      • #4
        Re: Another EA looking for help..

        I just have to say how impressed I am at your level of concern and support for this child. She is truly lucky to have someone like you on her side. My children are definitely not in the same league of need as this young girl, but if they were I'd be very thankful to have someone like you on our team. I hope you receive all the support and suggestions you need here.



        • #5
          Re: Another EA looking for help..

          Thank you cookiemonster, I really appreciate that. It's really nice to hear. I try to do the best I can with all the kids I work with. I treat them the way I would expect people to treat my own kids if they ever need a little extra help or understanding. Have a great day!