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  • New mom on board

    Hello everyone,

    I'm so happy to have this forum and resource available to my family. I posted here last spring about my 4 year old daughter who was experiencing tics for some time, both vocal and motor. We have recently had her reassessed by the ped. neurologist and she has in fact been diagnosed with Tourettes. She also has some OC behaviours and we have alot of challenges with her behaviour at home.

    We have 2 other children, a 6 year old son and 12 month old daughter.

    I'm really feeling the need to connect with other parents and other children for my daughter. She's a bright and loving little girl with a ton of energy, ideas and opinions! She's very aware of her tics and considers herself "different" from others. She has told us that her body and brain is different than ours because she has "stuff" that she nees to do to feel "perfect".

    She is in JK and adores school! Her teachers give her rave reviews and tell me that she is doing wonderfully. I fear that this will eventually change as she progresses through the system and I'm very worried about her future in school.

    Since her diagnosis is so new, we haven't discussed her Tourettes with her teachers. They haven't reported seeing any tics, but I understand that the JK class can be busy and she is only there for 2.5 hrs/day. I'm trying to prepare myself for this meeting, not exactly sure what information I should have and what I should be telling them. I don't like labels.

    Right now, not much has changed. We tell her that there are other people that have to do things too, just like her. Her tics are a normal part of her and that makes sense to us.
    We're struggling with some of her ritualistic tics and behaviour. Sometimes she can become angry and hostile if we unknowingly interrupt her tics by talking (to her or around her) or touching her. We try to understand her feelings, but we want her to respect our bodies and feelings also. This is an issue for us right now.

    We're just trying to find our way!

    Looking forward to learning and sharing.


  • #2
    Re: New mom on board

    Hello Jen!

    Glad you have found the TSFC Forum helpful. We are here for you to talk about your concerns for your daughter and ways to help her deal with her new diagnosis.

    She is fortunate to have a Mom interested in gaining information about her diagnosis as family support is the most important component in helping a child adjust.

    With family support and the information you gather, your daughter can be assured of having the best possible advantage for a happy life.

    Let us know haw we can help.
    TouretteLinks Forum


    • #3
      Re: New mom on board

      Thanks Steve for the welcome.


      • #4
        Re: New mom on board

        Hi JenLGA. Welcome to the forum. I just wanted to say hi and let you know that this is the greatest forum I have come across for helping in learning about TS and TS+. I have received so much help and support in learning how to help my son who has TS+ and you will find lots of support and help if you ask. This is a wonderful forum. I started off by reading old postings and boy did it open my eyes to a lot of things that had happened in the past and nobody picked up on, including us and his teachers. I also really enjoy the book that you can order from the TSFC "The parents handbook" I think it's called. Anyway welcome to the forum and if you have questions just ask. If the people here don't know the answer they will lead you in the right direction for answers.


        • #5
          Re: New mom on board


          Again welcome...

          What you are describing are natural hurdles and fears we all have as parents in the beginning. The balance comes in time once you better recognize the triggers, tics, and tolerance levels of your child.

          I strongly recommend keeping a journal on daily events, mood swings, sleep patterns. This is invaluable information when you spend a few minutes with a specialist and need more guidance. I always make a copy for the physician to keep and some have their own formats they provided.

          The school concerns have been addressed on another thread and there are a lot of older posts that I am certain you can relate too during your quest for answers.

          The book mentioned is wonderful and recommend you spend some time reading some posts in the Tic Parade section.

          You will find that all children are not alike through this journey and yet they have a common thread that ties them all together. It could be patterns, reactions, or tolerance levels and there are stages you experience as your child grows and develops.

          Right now the diagnosis is new for you and your family but it is also new to your daughter. It is common for a child to feel out of place or just different when facing TS but bringing them back in by them better understanding we are all different and that is ok helps find the balance you need.

          You can experience shorter fuse responses, lashing out maybe a better expression due to the frustration your daughter is feeling. TS does not have controlled responses when ticing. It is the complete opposite. For your daughter she maybe seeing the tics are interfering and she maybe trying to control or suppress them. That reaction can increase frustration levels, reduce general tolerance of everything around you and in some like my own son years ago cause rage attacks or reactions that are not acceptable to everyone in the home or at school.

          This stage for my son was basically a time to find himself and his own identity since he felt he lost control of himself because of his tics. He saw them at the time as a disruption and the reason everyone thought he was different.

          Acceptance at an early age is very important for any child and it is not until much later in development they begin to embrace their individuality and independence. So, this step is harder for younger children to understand.

          What I suggest that worked for us is do some reading, journalize everything, learn to discuss triggers and remove those you can with your daughter after the episode. Recognize the lower tolerance to life and build on that tolerance with time, education and support.

          I found we went through our own process of acceptance but my son went through his too and neither were the same. It is important you see this struggle and provide some hugs and short discussions. This makes feelings improve and creates a bond we think as parents already exists but may not. The tics can reduce, the tolerance levels rise and the compulsive responses curb.

          My son has TS+ including compulsive behaviors and sensory issues. I let him reach out to me or reach my arms out to him but never touch without him knowing. If the tics are bad during a particular moment while he is doing something like watching TV or playing a game I suggest something else we can do together which naturally improves the tics as he leaves the trigger.

          Respecting others in the home during these bad spells is also important, not directing hits, punches or words takes times if this is what you are experiencing. With some maturity and guidance and better understanding this too will improve.

          Once acceptance is accomplished, tics seem more natural or even rare, life is calmer as everyone knows their place in the family and do not have expectations of each other or of themselves that can not be reached at that stage of development.

          The books suggested is great to provide some direction and answers.

          Have you found a local support group in your area?

          Is there anyone in your daughter's school that has TS?

          These are all very important questions to ask to find the resources you need and support necessary.

          Please keep us posted on your progress and experiences.


          • #6
            Re: New mom on board

            Hi Jen

            Welcome back. I am glad you came back to chat with us. The fact that you are here and posting your questions and concerns is great.

            She is in JK and adores school! Her teachers give her rave reviews and tell me that she is doing wonderfully. I fear that this will eventually change as she progresses through the system and I'm very worried about her future in school.
            I had these same fears when my oldest was diagnosed. I have three other boys, one diagnosed and my twin are being assessed. I have come to realize that when our kids get in the classroom and they connect with a teacher they do fine. Their personalities often out shine their obstacles.

            I would encourage you to read and prepare yourself with as much info as possible and then have the meeting with the teacher. keep in mind that often times when children have TS and they have the symptoms of the other co-morbid disorders such as OCD and or ADHD, that it's not the tics that interrupt their lives, but these other symptoms. It is common that girls with TS present with OCD symptoms and that is what will cause her to get stuck and strive for perfection. The teachers working with her will need to have this awareness so they will understand and can accommodate.

            The trick to managing the school system is that you as the parent need to stay the most informed. KNOWLEDGE is POWER, so stay more knowledgeable about TS and your daughter's needs than the teachers. The Educators hand book and the Family hand book are two phenomenal resources that you need ... the rest you will get over time as well as partnering with us on this forum. We have so much info to share through our combined experiences it is unbelievable.

            Stay connected with us and remember any question, any time.

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