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Looking for guidance and support for my newly diagnosed son

My 12 year old son was diagnosed with Tourette in early 2015. He experiences mostly physical tics. He also deals with ADHD, OCD, some anxiety but mostly ODD. We live in a remote area with little to no support on this matter. I have researched and read all that I can, in addition to traveling many hours to a specialist which didn’t offer any help.

I am desperate to find some guidance, support and answers on how to help him, as well as our family, control his behavior. He is a loving, very intelligent, active person but his lack of impulse control and other classic symptoms get in the way of letting that come through.

Although it is difficult for me to share, I really need to try other avenues for help and think that this might be a great place to start. Who knows what doors it could open.

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9 Comments

  1. I have been reading The Defiant Child. Its proven to be very helpful to me but I am hoping to find something for my son to read as well. Its hard to know what information to give him and what is too much. I do feel like helping him understand what is happening would help him control some of it but also too much information could give him power he shouldn’t have.

    I have TMJ, that is a great idea to look into. I can see how that would help.

    • Hi, Im in the same boat and my son whos 11 has just been diagnosed with TS, he has complex tic disorder, he is also defiant and aggressive to us, He hits himself, which is very distressing for us. We have been refferred to see a specialist soon, but we feel like we are going a little bit crazy, Its been going on for yrs and changing constantly. Its not easy to deal with at all.

      • Hi CeriD. I hope the specialist can offer some hope to all of you. It is super hard to know what to do. I question a lot weather or not my son can control some of his behaviors. It just seems unreal to me at times that he can’t. I’m never sure how to respond. The book “Defiant Child” has been helpful as it sets up many situations, but it would be great to have a counselor with me in each scenario telling me what to say/do. From some of the things I have read and heard, things may get worse through puberty but can really calm down after. So maybe there is some light at the end of the tunnel.

  2. I’m not sure how much guidance that I could offer, but I would like to offer support. I have a TS teen who will be 14 this month. I have had a difficult time finding any kind of support in my area as well. It’s easy to feel like we are the only ones with this type of situation. My son is prone to violent outbursts, but only to his sister (half) who he was separated from last April (psychiatry recommended). I am looking for support also, and there isn’t much offered in my area. It would just be nice to have someone who may have had some similar experiences to talk to. He also has OCD and is online-schooled.

    • It would certainly be great to share experiences. My son has some anxiety, OCD as well. He seems to be classic ODD though. It is so hard not to engage in the agruments and outbursts. How do you get them to understand you are on their side and they don’t need to feel defensive with everything you say to them?

      Sorry to hear of the separation of the children. That must be hard for you. Are you on-line school because of TS?

  3. We are in the same boat but have a lot more support. I’m currently getting help from the book 10 Days to a Less Defiant Child by Jeffrey Bernstein. We also have had success with TMJ treatments that secondarily reduce TS symptoms.

  4. maybe some of the tics are connected to the anxiety, Being different comes can make most of us anxious then you add in the tics as well as ocd. Maybe starting there with the anxiety will help them help with the other challenges.

  5. We did visit a TS specialist in Massachusetts but they were not able to provide us with any support within our area. I never thought of CHADD. I will certainly look there. Trying to find some help for him with the ODD. Have been looking for self help books. Tried counseling but they didn’t seem to be dealing with the problem. They were focused on anxiety. His most recent tic, turning his neck, is causing alot of discomfort so now I need to look into that as well. Thank you so much for your reply. It is very nice to see a response. An early Christmas present to have someone reach out. Thank you.

  6. Good Evening,

    Have you contacted your local TS Association, or the one closest to your area. They will be able to give you information and point you in the right direction. Also have you checked out CHADD for the ADHD and OCD. There is a wealth of information there. There is also the support groups here on NJCTS, please check them out if you haven’t. There are so many of us who remember our child/children’s initial diagnoses.

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