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An Offer For Parents Of A Child With Tourette Syndrome

Hi all,

I’m going to spend the rest of December sending hand-written letters to kids with Tourette’s. If you have a child with Tourette Syndrome, and you think a note from me could be a good thing, please contact me and provide:

  • A mailing address
  • The child’s name and age
  • Tell me something about the child, and how he or she is handling TS

I’m hoping to write and mail everything by Christmas, but I’ll go for however long it takes if the response is larger than anticipated.

thanks!

Josh

Comments on this entry are closed.

  • Kim krug December 7, 2013, 11:35 am

    My daughter Morgan is 14 years old and has Tourette’s. She is not embarrassed by it, even though she has coprolalia also, which can be very challenging in jr. High. She actually knows more kids in the school because they are curious about her and she loves to educate people about it. She is very active and does cross country and track through school and volleyball through our park district. She also is on student council and plans on getting the whole school involved on may 15th for Tourette’s awareness month. She loves to go to camp twitch and shout in Georgia and be with so many other kids just like her. Thanks

  • Kathleen Linn December 7, 2013, 2:39 pm

    Sweet idea, Josh. You do a lot of good!

  • Brooke Pena December 7, 2013, 3:06 pm

    This is such a wonderful offer and idea. Thank you! Instead of writing directly to my son, would you be willing to write to the students at his school – Cumberland Academy of Georgia, 650 Mt. Vernon Highway NE, Atlanta, GA 30328. My son just started there this week after being treated poorly by another special needs school which was not understanding of his coprolalia, making his condition worse. He also has ASD. The school was founded by a mother whose son has Aspergers and no private schools in the area would accept him. They are kind to their students, about 80 total now from 4-12th grade who have ADHD, high functioning autism, and some with Tourette’s like my son, & they are doing much better after having to leave other special needs schools. The school is eager to continue learning about TS. ASD is higher in the TS population, FYI. I’m attending a TS conference here in February hosted by Brad Cohen, Breaking Boundaries. Cannot wait!

    • Josh Hanagarne December 9, 2013, 10:52 am

      Brooke, it might be better if I could actually speak to the school somehow, vs writing, even if it was just on Skype or something. Will you please send me an email and we’ll see if we can set something up?

  • Tanya newing December 8, 2013, 3:00 pm

    Hi, can you write to England??
    My son is Ryan, he is 12,
    Ryans tics are mainly verbal and it bothers others a whole lot more than it bothers him. Ryan has never been accepted in school or with his peers. He has had an awful time. In August Ryan flew to china to stay with my brother, for a much needed break from it all.
    He is coming home for Christmas and to stay. I will fight for Ryan like iv never fought before.
    Ryan is an amazing kid, he keeps going although his confidence is sadly so low, I believe his is afraid of who he really is.
    A letter would be amazing
    What a sweet thing you are doing

  • Jennifer Fairbanks December 9, 2013, 10:08 am

    Josh,

    My name is Jennifer and I have a 12 year old son named Cory David with Tourette’s/ADHD/ODD/OCD. Cory David’s tics have gotten worse since he started puberty, which I expected…however, it’s causing him other issues with his body. His knee is giving out now and we need to go see an ortho about fixing it. Sometimes when he is walking, his knee will just give out and he will fall down. This makes Nerf gun fights with his friends rather challenging! He tries to make light of it at school so the kids won’t tease him too much. When he gets home from school he lets all his frustrations out and unwinds by playing video games with his step dad. He is so smart, and such a good boy. He tries very hard to make everyone happy and would love for the kids at school to accept him with his special needs. I think what you are doing is a great thing for so many kids Josh! Thank you!! Have a safe and happy holiday season!!

    Jennifer Fairbanks

    • Josh Hanagarne December 9, 2013, 10:50 am

      Absolutely. I took your address out of the comment, but I wrote it down.

  • Jennell Pirtle December 10, 2013, 1:09 pm

    I have an 11 yo daughter with a new diagnosis of TS. She is struggling a bit here in small town Wisconsin because there is no one else she can relate to with her symptoms. A letter of encouragement would be great. Email and we can exchange information. Thank you!!

  • Danielle Wms December 12, 2013, 8:04 am

    My son Ne’Hemiah (Nemo) is 7, he was dx last yr in kindergarten. Nemo is an amazing kid but just trying to get him to get his self worth back is really hard and very sad. He had a very verbally abusive male teacher who constantly yelled, and shouted insults to my son. After trying for over a month to get an unsuccessful transfer to another class, my son got off the bus jerking his head back and forth. The next day he was seen by his dr and a neurologist who dx the TS and ADHD. The very next day I informed the school staff about his condition and the teacher walked off the job and resigned two days later. Now my son has ODD/ODD as well as anxiety and depression. I tried to get an IEP for him last year but it was denied because they said he was too smart, but his academics and behavior are not the same thing. He is having trouble with kids in his class counting his tics and his teacher keeps writing him up for verbal tics. I pray that maybe you can call the school and help me educate them. Not every kids tics are the same and they just don’t understand that. My Nemo is an AWESOME LOVING and CREATIVE lego builder