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Thread: New to Forum - My Son is 12yrs Old

  1. #1
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    Default New to Forum - My Son is 12yrs Old

    Hi there.
    I thought that I would say "hi". I only discovered the Forum today. I have been searching for some support from other parents or persons who understand TS. My son Brady is almost 12. He was diagnosed with Tourettes at age 9 when his seemingly minor facial tics and neck movements exploded into a flurry of vocal tics. Within a few weeks of symptoms increasing he was diagnosed with TS. He had just started in a new school and was experiencing some anxiety around this change. Once he settled in, we saw the tics diminish and lapse in to a very low grade state with minor exacerbations over the years. As we head in to school now, I find myself suddenly feeling anxious. His vocal tics have returned after several years of relative relief. He is now very aware of them and asking why he is "different"? He wonders why if tics are common, he doesn't see anyone else with them? The tics are worse at night when he is not "busy and distracted" (his description). He is having trouble settling in to sleep as the intensity of his tics seem to startle him.

    We have never actually told him he has TS because as soon as he was diagnosed the tics eased off. Now that he is asking we have begun to educate him. I have read that TS symptoms can increase in intensity over adolescence. Each time his tics get worse I wonder whether they will continue to get worse instead of lapse like they always have. It seems like they have been steadily increasing in intensity. I worry about school and all the potentially hard times ahead, socially. He has a great group friends and he is an avid basketball player but next year is high school and we all know how hard that is for many teens, tics or not.

    He seems ready to start to get some intervention and so we have scheduled an appt with a CBIT trained therapist who works with kids. Is there anything else I should consider? He has not needed much classmate education or intervention at school for the last 2 school years but I guess I need to change that next week. I have never considered medication but I worry that the sleep disruption will be something that makes his tics worse.

    I wish he knew someone else with TS or tics because that would make him feel less different.
    Thanks for letting me share.

    Maddie

  2. #2
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    Default Re: New to Forum - My Son is 12yrs Old

    Quote Originally Posted by Maddie
    I wish he knew someone else with TS or tics because that would make him feel less different.
    Hello Maddie and thanks for joining the Forum. You've raised a number of important questions that I hope we can address.

    The most significant development is that your son will be seen by a CBIT trained therapist. That experience should provide him and your family with a wealth of information about the dynamics of your son's symptoms along with effective strategies to manage them.

    Your son is not as isolated as he may think and giving him the opportunity to meet other kids and adults living with Tourette can help him gain perspective which in turn can help his self esteem. Have you investigated contacting and meeting with a local Tourette Canada affiliate or Chapter?

    We have never actually told him he has TS because as soon as he was diagnosed the tics eased off.
    Your son will benefit from knowing why he is experiencing his symptoms, because not knowing may be contributing to his confusion and frustration.

    Knowing what's going on allows him to do his own research, to understand he is not alone and to learn appropriate strategies to manage and deal with his situation. If he were diabetic or had, say, a peanut allergy, wouldn't it make sense to give him as much information as possible, to allow him to take the necessary steps to live with his disorder?

    The tics are worse at night when he is not "busy and distracted" (his description).
    Your son is demonstrating insight about his symptoms which is important, particularly with the advent of CBIT therapy. Self awareness is the most important factor in evaluating a child's potential to benefit from behavior therapy, next to being motivated to learn.

    When a person with Tourette is engaged in an activity requiring focused attention, tics often virtually vanish, due to the way the part of the brain (basal ganglia) thought to be where Tourette originates, manages movement and focus.

    You may find this article interesting: Much More Being Learned About Tourette Syndrome.

    As you will learn in your son's CBIT therapy, tics, while involuntary, are influenced by environmental factors. These factors include such things as being stressed, excited, anxious or fatigued. Any of these can make tics more frequent and or intense, so by mitigating environmental factors, tic triggers can often be better managed.

    Our Forum contains considerable material on CBIT HERE

    I would especially invite you to download the overview article on CBIT HERE and then view the videos by Dr. Douglas Woods on the subject, especially video #1 HERE that will assist in demystifying the actual dynamics of Tourette Syndrome.

    He has a great group friends and he is an avid basketball player
    Tourette should not be what identifies your son, but rather the active, sociable, creative and intelligent young man that he is. Tourette does not affect the wonderful person that he is, does not affect intelligence, cognitive ability, personality, or potential in life.

    The best thing happening for your son is the opportunity to learn some important strategies to manage his tic symptoms with his CBIT therapy, which should provide him with effective tools for life.

    How are other members of your family dealing with and reacting to your son's symptoms in and around the home?

    Have there been any associated disorders combined with the Tourette diagnosis?

  3. #3
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    Default Re: New to Forum - My Son is 12yrs Old

    Hi Steve,
    Thank you for your thoughtful response and the information and links contained within.

    I am glad to hear that CBIT is a good place for us to look for something that may prove beneficial for Brady. I agree that he is ready now for information, support and tools that may make things better for him. I guess we never really felt the need to identify to him that he had Tourettes because he wasn't asking about his tics and they were generally mild, with exacerbations disappearing as fast as they came on. The difference for all of us now is that he, himself, is wondering. We have begun to help him understand what is Tourettes and how to talk to his friends about it. Up until now, we have done all the talking with his friend's parents and his teachers. I knew the time would come where he would need to be able to educate people himself so we are fully prepared to help him with this. I have read the words that you have advised others to use when describing their tics. We will start there.

    I haven't been able to locate an active chapter of Tourettes Canada in the Vancouver, BC area. There seems to have been one at one point but I am uncertain if it is active. Any advice you have in this regard would be helpful.

    As for his family, Brady has a 15 year old brother who is a good support for him, but he needs to learn more about TS. We will be including him in what we learn. The boys get along well and his brother is a very patient guy. My husband is the easygoing one who really seems to take everything in stride. He is not perturbed by the presence of Brady's tics and he has always felt that they will continue to ebb and flow and that we shouldn't get too worried about them. He is a stay at home dad so he spends a lot of time with Brady. Essentially, I am the one who is incredibly anxious regarding Brady's tics. It's not that I am bothered by the tics. Not at all. They are a part of him. My anxiety is about having a child struggle and always wondering how he will cope? What will his life be like? Your previous response though will certainly guide me in this regard. My husband is a great one for me to discuss this with - he always says that we have a happy, well-adjusted kid so why don't I just hold on to that and see THAT as his future and not the tics that may or may not be there (and which, as you pointed out, don't define him anyways).

    You ask about the presence of any associated conditions...well...Brady is a very anxious child who has a bonafide anxiety disorder. That is why we made the decision 6 years ago to have my husband stay home. We have been helping him to manage his anxiety conservatively for years now, but along with the CBIT we have consulted a child psychologist (who was recommended by the CBIT practitioner) to see him for his anxiety. Apart from that, he has sleep disturbances - hard for him to fall asleep despite being tired; frequent night-waking. He has become much more self-reliant in the last year or so in this regard. He describes being very anxious at night (his worries are catastrophic in nature - fires, floods, earthquakes, drought...etcetera). His dad and I believe he will benefit from seeing a child psychologist.

    Thanks again for your interest, kind and informative words. I am very glad to have found this forum and will continue to check out the different threads/specific topics & groups.

    With appreciation,
    Madeleine

  4. #4
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    Default Re: New to Forum - My Son is 12yrs Old

    Madeleine,

    Thank you for your kind words, and I hope you will continue the dialogue here on the Forum about Brady's progress. It sounds like Brady has a sound family support system which is important for his learning to manage his symptoms as he continues to mature.

    My anxiety is about having a child struggle and always wondering how he will cope? What will his life be like?
    His life can be what he makes it. The majority of people with a Tourette diagnosis live perfectly happy, productive and fulfilling lives, using a variety of skills to integrate into their chosen environment. Along with the management skills Brady will learn in his CBIT therapy, learning to advocate for himself and to negotiate for his special needs will give him the tools he will need in social, academic and eventual workplace situations.

    Tics are not always the major concern, as tics, with cautious optimism, may eventually stabilize and even subside in some cases; however associated disorders may persist, so your having Brady receive counseling for his anxiety issues are a wise choice.

    Some of your concerns may be allayed by looking at the many stories and reports about people successfully living with Tourette in our Awareness section.

    I haven't been able to locate an active chapter of Tourettes Canada in the Vancouver, BC area.
    To my knowledge there is a Resource Unit in the Vancouver area which you may want to confirm by calling the Tourette Canada National Office if you don't succeed in contacting the Resource Unit.

    Please let me know how you make out with these contacts.

    If you can spare about an hour, I would suggest listening to an archived NJCTS webinar titled Tourette Syndrome and Developmental Disabilities by Dr. Lawrence Brown. This webinar explores the significance of associated disorders when taken in context of a Tourette diagnosis, which you may find insightful.

    Before downloading the Free webinar, please see this Forum post for information about technical requirements and the Codec you need to install.

    When is Brady scheduled for his first CBIT session and is the family participating in the interviews?

  5. #5
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    Default Re: New to Forum - My Son is 12yrs Old

    Quote Originally Posted by Steve View Post



    To my knowledge there is a Resource Unit in the Vancouver area which you may want to confirm by calling the Tourette Canada National Office if you don't succeed in contacting the Resource Unit.

    Please let me know how you make out with these contacts.
    Thanks for sending her our way,Steve. The Vancouver Resource Unit is running, and eager to provide support locally! Welcome to the family, Madeleine

  6. #6
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    Default Re: New to Forum - My Son is 12yrs Old

    Hi Steve,

    Thanks for all of your information and support over these past couple of days. I appreciate you taking the time to personally welcome and support me in my questions/concerns/anxieties. i will be spending some time familiarizing myself with the resources provided. I am grateful for the link to the Vancouver Resource Unit.

    You ask about Brady's first CBIT session....it is next Saturday and it will hopefully be the whole family. If not initially, then subsequently. From what I understand from the practitioner, family involvement is likely essential to Brady's success at this stage in his life. We have a lot of learning to do over here!

    Kindly,
    Madeleine

  7. #7
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    Default Re: New to Forum - My Son is 12yrs Old

    Social support is very important for the successful application of CBIT strategies, with encouragement and positive reinforcement.

    When providing support for application of competing responses, the tone should to be positive and geared to reinforcing the use of the competing response, which, according to your description of your family's positive and supportive dynamic should be no problem.

    As you probably noticed, you received a response from the Vancouver Resource Unit.

    We will be looking forward to hearing about Brady's progress.

    Understanding that distance may be an issue, you may consider attending the Tourette Canada National Conference in Niagara Falls this October, where you can meet other families and Brady could meet other kids living with Tourette.

  8. #8
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    Default Re: New to Forum - My Son is 12yrs Old

    Hi again Maddie,

    BC childrens contacted us recently and I thought it might be of interest to you.

    "The Neuropsychiatry Clinic at BC Children's Hospital is currently accepting referrals for Tic Busters: A Group Based Intervention for Managing Tics (More information is available in the attached document). The next group will begin in October, so intake is currently under way.

    Criteria for group eligibility is as follows:
    - Children aged 9-12 who meet criteria for a tic disorder
    - Tics are currently significantly interfering with some aspect of day-to-day life
    - Other mental health conditions are either secondary to Tic Disorder, or if another disorder is the primary diagnosis is currently well managed
    - Low average or higher intellectual functioning
    - Parent involvement in group session is critical

    Parents are asked to have a health care provider submit referrals on the attached Outpatient Groups Referral Form, being sure to include any relevant documentation (e.g., assessment report)."
    I will attach more info hereTic Busters Announcement - Fall 2015 [76166].pdf


    If you are interested let me know and I will privately send you the referral form as it is too large to post in the forum


    Best,

    Kayla

  9. #9
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    Default Re: New to Forum - My Son is 12yrs Old

    I wish he knew someone else with TS or tics because that would make him feel less different.
    Thanks for letting me share.
    Maddie
    HI Maddie,
    I'd also like to welcome you to the forum even if I'm also new here.
    I empathize deeply with you regarding your desire to do everything you can for your son's wellbeing. I hope yo can find a bit of consolation in the fact that today TS is diagnosed early, many different avenues of help for children and teens are now available including support groups and hopefully in time the next step will be a better understanding of it all by the rest of the population.

    Regarding your last quote, knowing someone with TS or another Tic affliction might not make him feel less different but would probably make him feel less alone. That can have a very empowering and uplifting effect in having a friend who actually understands what you're going through without having to educate him/her on your condition.

    All the best wishes to him (and you) regarding all the new steps he will be taking this year

    Gary

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