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Thread: New Here... Mother of a ticking 6-yr-old

  1. #1

    Default New Here... Mother of a ticking 6-yr-old

    Hello! It's my first time on this site...

    Although we have no official diagnosis, we have been pretty sure for a couple of years that our now 6-year-old daughter has TS. At age 3 she started doing a variety of both verbal and physical tics, beginning first with throat clearing and arm and neck jerking movements. Every morning would begin with a long period of throat clearing (often an hour or so), then the physical ticks would start up. Sometimes the tics would continue throughout the day, or perhaps mostly dissappear, but then at the end of the day when she was tired they would return until she fell asleep. Tics always increased with stress or fatigue.

    Although the onset of these tics were concerning (frightening, to be honest -- what parent wants their kid to have to cope with being "different", on top of all the other challenges in life?) they were also very familiar to me. Both my brother and I had similar tics as children. My brother's tics (also head and neck tilting/jerking, and various verbal tics such as hissing) seemed to gradually go away over the years. Mine (mostly finger and toe "snapping", and a sort of "nasal" tic) seem to have gotten stronger over the years, although they wax and wane, and they have always been mild enough that they never particularly interfered with my life. But my daughter's tics were much stronger, much more obvious, than anything my brother or I had ever experienced.

    My husband and I discussed this in depth at the time, and after a great deal of research about "tic disorders" in children and Tourette Syndrome, and discussing our concerns with our family doctor (who mentioned "transient tic disorders" and suggested that they often go away over time) we chose not to seek any form of "official diagnosis" at the time, for a variety of reasons. We live in a rural area, and although I have a great deal of respect many aspects of our medical system, we were concerned that a diagnosis in the fairly nebulous field of "mental / emotional / psychological" medicine -- and the process involved in obtaining one -- might do more damage than good. Also, based on our understanding of what we believed this to be (TS) we wouldn't have chosen to "do anything about it" in any case.

    As (incredibly good) luck will have it, one of my closest friends since university has TS and OCD. It is largely due to this that I knew a lot about TS, and (even years before having children) recognized that I myself had many of its characteristics, although mild. This good friend of ours is also convinced that our daughter has TS. It is extremely comforting and helpful to have this wonderful role model (of someone with fairly severe TS who nevertheless has a rich and full life) as well as having her as a resource to turn to for information and support.

    Since the first appearance of these tics, there have been periods of time when they have been more and less severe. And I'll admit -- like every parent, I suppose -- I hoped that they might just go away altogether, although deep down I didn't believe that would happen. We have been very fortunate to have been able to keep stress levels to a minimum as much as possible, and our daughter has been in a very small (8 kids) supportive and understanding environment at pre-school and for her Kindergarten year. The kids that she has been with up until now have always known (and accepted) her with her tics -- I heard one little boy say to his concerned mother recently "Oh, she just does that. Don't worry." And then the kids continued playing, our daughter ticking away happily.

    But now we are faced with sending her to school this coming September, in a new environment with a new batch of kids who haven't known her for years. And recently, as not-so-good luck will have it, her tics are worse than ever, continuing almost non-stop from the moment she wakes up until last thing at night. I have realized that the time has come for us to educate others -- teachers, classmates, and our daughter herself -- about what is going on with her, in order to help them understand, accept, and hopefully make life easier for her. So I am looking for resources and materials with which to do so.

    I know that this may be controversial, but I am still not sure whether we wish to persue an "official diagnosis" at this time. We live in Nelson, British Columbia, which is about halfway between Vancouver and Calgary (approximately 8 hours from either). We have taken videotapes of our daughter at various times over the past few years in order to have a record of her tic behaviours, to refer to if we choose. Yet we are so sure that this is TS, and I am so familiar with her behaviors (I do them myself) that there doesn't seem to be much point in having a doctor (who quite likely will have very little experience with or understanding of TS) try to come up with a diagnosis. However, if there ARE any good resources in our area -- doctors with a lot of experience with TS, or possibly with TS themselves -- I would very much like to know about them.

    Up until now, our daughter has no sense that there is anything "wrong with her" (or at least has never expressed these sentiments to us). She is a happy, loving, fairly sensitive and somewhat socially awkward child who adores her friends and family. She is very gifted academically. Next year she will be in a multi-age classroom (6 to 12-year-olds) that we have chosen to place her in, partly due to her tics and partly due to her academic abilities. I have spoken to her teacher about our believing that our daughter has TS, and am confident that this teacher will handle this sensitively and responsibly to the best of her abilities. Yet if there are reccomendations of materials for educating teachers and classmates about TS, I would love to hear about them.

    I also need to find materials about how to educate our daugher, so that she knows and understands what is going on with her, and so that she is able (when necessary) to explain her behaviors to others. So far, the topic has only come up a few times -- and after asking her whether she feels like she HAS to do these motions over and over, as though she wants to "get it right" (to which she said yes, and seemed quite pleased that I understood so well) I assured her that it was just fine, and that I (and this other friend of ours, who is a favorite of our daughter's) do the same thing.

    But I know that kids can be cruel, when someone appears to be strange or different from the rest, and I know that sometime soon she will be facing curiosity and questions and -- my heart bleeds knowing this -- misunderstanding, teasing and rejection at times. Thus far we have managed to shield her from any of this, but I know that this can't go on forever. And as her mother, I am scared. I know that she has the advantage of having a very supportive family and extended family that will always accept and support her no matter what. And for that, I am incredibly thankful. I also know that things could be so much worse, and even though I worry about her, I try to remind myself regularly that in the grand scheme of things, we have a happy, wonderful little girl. She just happens to tick.

    Thanks for listening. Any resource / contact suggestions would be much appreciated.

  2. #2
    Join Date
    Jan 2004

    Default New Here... Mother of a ticking 6-yr-old

    Hi Rita:

    Welcome to the bulletin board!

    It sounds like you are providing a very supportive environment for your child. It is great that she has such a positive role model in both you and your friend.

    Whether or not you pursue an 'official diagnosis' is not so much an issue as whether you try to ensure that your daughter has the supports and accommodations she may need in order to be successful and it certainly sounds like you are trying to provide that.

    With regard to educating the teachers, I suggest two things. The first is to get the Educator's Resource Kit available from the TSFC, or recommend that your child's school purchase the kit. The kit includes the Circle of Support video, a handbook for educators, plus it has a workbook so the teachers can work through the kit while learning strategies for dealing with TS and its associated disorders in the classroom. Click here for details.

    The second thing is to contact the TSFC National office and check if there is an in-service presenter in your area. In-service presenters can come to your child's school and do a presentation to the teachers and/or the students about TS and its associated disorders, and including strategies for the classroom. You can also ask the TSFC to send you handouts for both parents and teachers.

    If you are looking for books, etc. for your daughter to help explain TS, check out the message stream on kids books here

    Have you talked to your daughter's preschool teachers or to other parents about your child's tics in the past, or was she just accepted 'as is'?

    Your daughter's acceptance of her own tics and differences will go a long way towards other around her accepting these 'differences'.

    Let us know how she does when she gets into the new school this fall.
    Forum Moderator
    TSFC Homepage

  3. #3
    Join Date
    Apr 2005
    Ottawa, Canada

    Default New Here... Mother of a ticking 6-yr-old

    Welcome to the TSFC Forum, Rita!

    We understand the concerns you and your husband have in deciding how to deal with your daughter's suspected diagnosis.

    As Cathy suggests check with the National office at (800) 361-3120 to find out about local support.

    Check the list of Local Chapters

    Information is power, Rita, and if your daughter indeed has Tourette, by knowing for sure, you can develop strategies that will help her deal with the disorder as she grows up. At a time when she is learning about interpersonal relationships, if she needs to develop skills in explaining her behaviour to people, the best time to develop these skills is at a young age.

    May I suggest you locate a physician with training in Tourette Syndrome within a reasonable distance from Nelson. Not all clinicians have the training to diagnose Tourette, because there is no blood test or other diagnostic tool other than observation.

    We're glad you have joined us and we'll be looking forward to hearing about your progress.

    Let us know how we can help you further.

  4. #4

    Default New Here... Mother of a ticking 6-yr-old

    Thank you both, Steve and Cathy, for such prompt replies and for your suggestions. We will be out of town for this following week, but I will persue these upon return, and order the resources for teachers immediately. I'll be in touch. Thanks again! (Rita)

  5. #5

    Default New Here... Mother of a ticking 6-yr-old

    Yes, we have talked to pre-school teachers and other parents in the past, with regard to her tics. When questioned about them, we have told people that they are involuntary, and to please not draw attention to them, as she wouldn't be able to stop them in any case -- that asking her to stop ticking would only make things worse, and make her feel bad about herself.

    As I said, we have been very fortunate in her pre-school and kindergarten situation and teacher. And in the parents of her peers. But people are starting to ask more and more questions, including the kids themselves, and I am looking for the resources with which to educate them. Although I don't want to make a bigger deal of this than it has to be, I also know that we have reached a point where we can't go on "pretending there's nothing wrong". It is better to educate people and have them understand, rather than to have them wonder (and not ask) and make judgements or assumptions based on ignorance.

    My second child (my daughter is the eldest) was born with a clubfoot, and through many months of leg casts and braces I learned that it was far better to just smile and explain to people about his feet, rather than have them leap to conclusions (as they so often did) about his being a victim of abuse or neglect... (it is hard to believe how many times someone would question how we broke our baby's leg) -- but after all, he was in casts, and that is what people assume.

    Perhaps I should have applied this lesson much sooner to our daughter's behavior. I, and my husband as well, have been in denial. Privately, we both know what is going on, but actually "labelling" the problem for others is something that we have been avoiding. We have tried to minimize the attention drawn to our daughter's tics -- largely successfully thus far -- after all, who wants to call attention to the fact that one's child is "different"? But it is becoming more and more obvious that she IS different, and we need the knowledge and resources to help her.

    I know that we have to change our approach, also that I have to work through my own feelings of fear and frustration (and accept them) in order to help my daughter. Thanks again for listening...

  6. #6
    Join Date
    Apr 2005
    Ottawa, Canada

    Default New Here... Mother of a ticking 6-yr-old

    We will be here for you when you are ready

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