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I’m just learning about Tourette Syndrome … help?

I am a mother of a 7-year-old daughter, Siena, who has multiple disabilities. She has Asperger’s, anxiety disorders, language problems, a tic disorder (which now needs to be changed to Tourette’s), sensory issues, etc., and as a result we have a lot of challenges to deal with.

We love her dearly, and my husband and I spend as much time as possible helping her, which of course is difficult as we are both working full time. I am a licensed clinical social worker who provides counseling. Siena is currently receiving help in occupational therapy (OT) and an ongoing social skills group.

The school has refused to help, so we are battling that as well! I am sure these are issues and themes that many parents can relate to! I do not have to much history with TS. Siena has had tics since a young age, and now they keep recycling and have increased in amounts and duration and types. I am newer to this area, so I need to gather more information myself!

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  1. Thank you all for your support and help. I am not new to the world of ASD or the many comorbidities that come along as well. Unfortunately, I am also used to battling the school system! I am not very knowledgable about TS. Siena has always had tics but this has now become a big problem for her. I am also curious to hear more about the neutraceuticals diet. I do need to get her a formal diagnosis of Tourettes. Is there a particular specialist that people have found to be better to use? If anyone lives in NJ I would gladly welcome andy feedback on good MDS.
    Thanks so much for the big welcome. I wish all the best to you and your situations as well.
    Take care.

    • @Angela – Is this the same angela I know from my blog? I’m going to call or email you one day for info.

      @ Jessica – Keep writing. It’s so helpful as I think my son is going to end up down this path. I’m a bit sad about it/anxious as I didn’t expect it. 🙁

  2. Jessica, I can give you a tonne of input on the ASD and its related symptoms (communication, sensory, anxiety and depression, obsessions, executive function, etc. etc.), as my son also falls into this category, but to be honest, we have largely ignored his Tourettes symptoms with the exception of nutraceuticals/food that aid in helping his neurological system to run more efficiently. He does not yet seem bothered with his tics (except a body contraction one he had over the holidays that was making it hard to sleep, but that only lasted a few weeks and hasn’t returned), so our focus has been on his other areas of difficulty that stem from the Aspergers diagnosis. I know different docs describe it a little different, but from what we have been told. the ASD diagnosis of Aspergers is pretty much the founding cause of all the symptoms that your daughter and my son experience. Addressing these symptoms with an integrated approach to strategies and accomodations seems to work best for us. With regard to the school, the U.S., like Canada where we live, has education legislation that prevents a school from refusing to help. You just need to know the write procedures and terminology to fire them into action sometimes. Don’t give up or give in on this area. Improving the school environment/experience for our kids is one of the most impactful for their success in all areas as the anxiety and frustration and nervous system stress they endure at school will be carried to all environments. I would be happy to share some more of what works for us with you if you wish. Just let me know more about what you are looking for feedback on.

  3. Hello, it can be very frustrating and draining when it comes to getting the resources needed for your child. It is a sad fact that Schools and their staff can be resistent to helping your child. I made a small notation of our struggles in my blog on here that is in 4 parts. I have plenty of experience with pushing and prodding my son’s school district to test and put in place accomodations. It was not easy but at the end of many years, my son is more successful and enjoys school with all accomodations in place. I have always made it clear that I don’t need to be friends with anyone working in Special Education, but I will do what is best for my son rather they like it or not! Too many times I was told my son was too smart or would not qualify for the resources I requested. I told them to just do it and when I wanted their opinion, I would ask for it! Having the correct diagnosis of Tourettes in place was key to obtaining the accomodations he needed, so the sooner you have that diagnosis in place for your daughter, the better. I run a local support group “The TSA Greater Sacramento Area Support Group” under the Northern CA chapter. Hopefully you have a group you can attend. Mine are casual and more like friends just gathering to chat. We have a common bond and everyone leaves with a smile and feeling so much better! 🙂
    Christina

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