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Parents of Teen with TS, OCD and Sensory Issues

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  • Parents of Teen with TS, OCD and Sensory Issues

    Hi Everyone. I'm new at the forum.
    I would love to correspond with other parents of teens with TS to share ideas on behavior issues, medication and therapies. Also interested in families who have struggles or successes with OCD and Sensory Dysfunction.

    Look forward to all your replies.
    :D
    Tictalkmom
    Being different is special.

  • #2
    Parents of Teen with TS, OCD and Sensory Issues

    What is sensory disfunction? Sorry I am learning all the new terms LOL

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    • #3
      Answer to your inquiry: Sensory Dysfunction

      Thank you for your inquiry.
      Sensory Dysfunction (SD) in laymens terms (I'm not a health care professional):

      The inability to efficiently process sensory information (from your five senses: Hearing, Vision, Smell, Taste and Touch). Some people are can be Hyper Sensitive (over sensitive) or Hypo Sensitive (under sensitive) to sensory stimulous.

      In our situation, the sense of Touch has been very much affected. My kids may interpret a poke on the arm as a hurtful experience. They may over-react to being touched, which can set of their fight-or-flight response. For example, I cannot go behind my dd and give her a big hug because she will find this extremely upsetting, but if she were to solicit a hug from me, or know I was going to give her a hug, she could then tollerate the experience. It is not something they can control at all. There are techniques to teach their brain to learn to cope better, but I have yet to find the therapy to support this (dispite what I have read).

      I hope this information wasn't too overwhelming, but I'm glad you asked.
      Diane
      :D :D
      Tictalkmom
      Being different is special.

      Comment


      • #4
        Sensory Dysfunction

        Hi Diane

        I noticed that your sign in says you are from Ontario, as am I. Have your children been diagnosed with Sensory Dysfunction or have you done a lot of reading and figured this out for yourself? The reason I am asking is that I beleive sensory issues, particulary touch for my ds as well, are impacting on his day to day life. I think that Sensory Integration Therapy would help him and I know that it is Occupational Therapist (OT's) who do this, yet I have no idea how to access the service. My son receives weekly OT at school through CCAC, however, they say they will not do "sensory" stuff. Just wondering if you had a different experience.
        Mom2sb

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        • #5
          Sensory Dysfunction

          Hi Mom2sb

          Thanks for asking. It's like "which came first, the chicken or the egg".
          Both our dd started with symptoms of sensory dysfunction, particularly the tactile issues. It was hugely impacting their activities of daily living in a negative way and still rears it's ugly head. We learned of this "disorder" through word of mouth and by reading many books. We didn't require a diagnosis to prove they had SD because we knew that's what was going on (our dd's are textbook cenarios). Eventually, through getting diagnosed with Obsessive Compulsive Disorder, we were directed to an OT service at the Anxiety centre where are dd was getting treatment. I was able to make a self-referral, but did require a physicians referral which my family doctor made on our behalf. They tried some "brushing" techniques that we worked on for about 3 months but didn't find any significant changes that were positive. Unfortunately, there were more services they could try, but our dd's were deemed as high functioning and we were basically told that they don't have the staff to work with us (it's a specialized service and limited OT's with the particular training). The treatments are usually used on children with Autism. It was very dissapointing because we are no further ahead then we were 5 years ago with the SD portion of our family dynamics. Our dd's have learned some coping mechanisms of their own, but when there are any changes in routine in our home (good or bad), their sensory system gets all out of wack and then their OCD and Tourettes just flares up. To answer one of your questions, the OT did diagnose our dd's with Sensory Integration Dysfunction.

          You should talk with the CCAC and ask if the have any contacts for OT outside the school system, or you can contact your local hospital and inquire as to where you might find these services. Then, you could ask your physician to make a referral for you.

          There is so much talk about "early intervention" out there and I know for fact that it is really important, but unfortunately it's difficult to find services and there is such a shortage of healthcare providers that specialize in these illnesses; that it creates a waiting-list nightmare.

          There is a really good book called : The Out of Sinc Child. It's all about SD and it's an easy to follow book. It helped me to understand our children a little more, and now I'm more in tune with them when they are having problems and I can negotiate better because I can better relate to what they are going through.

          I also have sensory dysfunction since I was a child and some things are an issue with me still. It's like our brain cannot filter out all the "extra" stimulous that is coming into our brains and our mechanisms to deal with the excess sensory input goes into overload.

          I'm from the Hamilton area if this is of any help. I can direct you to services if you are within the same community.
          Take care and thanks for asking.
          Tictalkmom
          Being different is special.

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