Saturday, January 28, 2012

Meet Andrew: A brave 9 year old boy with TS who will be featured in the documentary

Andrew is a brave and smart 9 year old boy. Andrew has excellent talent for playing the drums, a passion for drawing, and Tourette's Syndrome. Andrew has an older sister named Sam who also has Tourette's, and he and his older sister will both be featured in my upcoming documentary, Out of Our Control. What is it like for Andrew, living with Tourette's? He has answered some questions that I asked him to help us find out.

When were you diagnosed and what was it like? 
I was diagnosed when I was 8 but have had tics before that. I knew my sister had TS and I was used to her tics but it was still scary because I had it now.

What are some of your tics?
I drum on everything. I also punch my jaw, crack my jaw, flip my hair in front of my eyes, touch everything, sometimes I punch my legs. I repeat my thoughts and if I am told to stop, I have to do it one more time. I make noises like clearing my throat. I also have this throat tic that makes me swallow before I eat. I also rub my eyes.

What's the hardest part of having Tourette's?
I don't like not being able to stop my tics. I don't like when other people tell me to stop my tics because I can't stop them and then I am treated like I am bad or something. 

Do you think they're a positive side to having Tourette's?
I have my sister who has TS and we get along and understand each other. My mom and dad understand too. I have not met anyone my age yet but my mom is looking.

What do you want others to know about TS?
I can not control my tics. Being asked to stop or told to stop only makes my tics worse. I am not a bad kid.

Do you have associated conditions?
I have OCD and anxiety. I also have sensory tics. I have to touch everything and I have to finish things and I don't like when my mom leaves during the day or night. 

Do you take medication? Has it helped?
I have not tried any medicine yet. I know it did not help my sister and I saw her tics get worse. I don't want that. I do yoga with my mom and sister. Oh we both take melatonin to help us sleep.

Have you ever been bullied or teased because of your TS?
I have not been picked on by kids. My teacher did not understand TS and she was punishing me at school even though my mom tried many times. I was just taken out of school until we move. My teacher made my tics worse.

When do you tic the most? the least?
I tic when I am nervous. My teacher always made me aware of my tics and always told me to stop. She even moved me from my seat because I could not stop but that just made me worse. I tic at bed time and in public places.

What would you say to someone who was just diagnosed?
To make sure your school understands what you have or you will not have a good time in school.

To hear more of Andrew's story and the stories of others like him, keep an eye out for the upcoming documentary, Out of Our ControlThe documentary features 18 people just like Andrew who live with TS every day and their opinion on what it's like to have it. 


  1. My daughter is nine years old and was diagnosed st age five. She also has OCD/ADHD/MDD and sensory disorder. We are moving from florida to georgia because of her school and teachers. It is terrible the way teachers treat kids.

    1. I just don't get how when we tell the teachers that they have a diagnosed disorder they can just ignore the facts because it doesn't fit their curriculum. Makes me so mad...

  2. Makes me so sad when I hear stories like your daughter's and Andrew's. The world still needs so much more tolerance and acceptance, even from the teachers. Hope your daughter's new school is better. Good luck! :)

  3. Oh wow! This is awesome.. so happy to see this. Andrew's teacher was horrible. She was giving him three chances to stop or redirect his tics and would say it loud for all the kids to hear - then she would grab him by the shoulder and take all his things and move him to the back of the class room, put him in a chair that said "quiet zone" .. the damage is done.

  4. I just cannot believe that a teacher would ever treat a kid with Tourette's like that. When I showed my documentary to my senior class, afterwards one of my teachers came up to me and said that she also couldn't believe that a teacher would do something like that. So glad that Andrew does not have to deal with that teacher anymore!!!

  5. My 9 year old son just read this and he was so happy to find someone like him. He and Andrew have many similarities.

  6. My 10,9,8 & 6 yr. olds have all been diagnosed with Autism, adhd and sensory perception disorder, my 8 yr old also with O.D.D. and my 6 yr. old son with tourettes as well. My 6 yr. old son began with head banging as an infant. it progressed to spinning once he could walk, by the time he was 5 he had developed other tics such as repeatedly spitting, every second on the second sometimes lasting for days at a time. Another tic that began around age 5 is repeated finger sniffing. Both my 8 yr. old & 6 yr. old sons have been medicated. I have to say, although I am extremely concerned about the side effects of tbeir medicagions., however both boys are able to function appropriately at home and school during the doses of their medications. They both are on Intuniv and my 8 yr. old also takes focalin. The Intuniv at a of 3 mg. per day dose is enough to control my 6yr. old sons tourettes tics. I was leary at best putting him into kindergarten, fearing he would be teased and embarassed by his tics, but once he began the spitting tic, I was scared he may be removed from school all together for obvious health reasons. A child in a public school cannot sit in class repeatedly spitting all day everyday. But thankfully, his medkcation being gradually increased to the find the appropriate dosage for him, which is the 3 mg. dosage, has worked wonders and his tics are well controlled. The 1st hr. of everyday, the "premedication" time, is less than pleasent for the kids and our family. Neither boy can control any of their behaviors and cannot function well at all. It is extremely sad and very hard to cope with. But once their doses kick in, they function quite well. My 8 yr. old had a 0% ability to learn or retain any information in school prior to being medicated. after the last yr. and a half of being on his medications, he functions at grade level with little to no intervention. I also give melatonin and fish oil supplements to all 4 children. I am not advocating the use of medications, but simply stating what has worked and in what ways for my own children. GODD LUCK & GOD BLESS EVERYONE!