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Newbie here, with the story of my son

I am new to blogging, but I came across this site, and I thought maybe I had something to contribute!

My son Evan was diagnosed at age 6 in the first grade with TS. He had always had this little thing he did from about age 2, though, which we called “pulling his chicken neck.” 🙂 You know how families are, you attach these weird little words affectionately to things your children do.

We never gave it a thought. It wasn’t until he went to nursery school, and they told us that he really played alone a lot and didn’t interact much with the other kids, that I started to wonder about some of his little odd behaviors. My guard still was not up, though, until regular school.

Evan seemed to be more active, and more out of sorts than my other three children had been. Since he was a late baby for us (our others were 22, 20, and 15 at the time he came along), I thought maybe we had just forgotten how the other children really were at this age.

We were told various things. Evan couldn’t sit still for story time… Evan couldn’t seem to pay attention, and he made noises. It wasn’t until first grade that he began what I know now was yelping that I decided it was time to call the pediatrician’s office.

He then referred us to the neurologist In Hartford. I had taken a recording of Evan yelping, and he was very glad that I did. All he had to do was watch Evan pull his neck and listen to him yelp and crawl over, under and around the chairs in his office to know what was wrong with him.

We decided that we didn’t want to go the medication route and instead enrolled in Yale Child Study Center classes to learn how to manage Evans now-emerging behavior problems. We couldn’t understand his inability to change activities without meltdowns, his stubbornness, his downright refusal to leave the house, or go to the barns at the fairs, or do many sensory things.

We learned the chip program from Yale and used it both at home and at school and were very successful with it. We quickly realized that Evan needed a 504 and was in need of things such as a weighted vest and some pencil grips and a ball to sit on in the classroom. He also needed a ton of help with social skills, which we got.

The schools here in Connecticut were wonderful. Evan was eventually transferred into the special education program and remained there until his junior year of high school. I cannot say enough about all of the PT, OT and speech that Evan had. He had the most wonderful teachers and assistants along the way.

If you saw Evan today you wouldn’t believe it was the same child. Unless you look very closely you would not realize you were seeing him “tic,” but he does. Most definitely. He has had an assortment of motor and vocal tics, and many other conditions that go along with Tourette’s, but he has shined like a diamond through it all! I always worried that friends would be an issue, and girls, and neither were a problem. They accept him for who he is.

Today he is 18, and attends the Hobart School of Welding Technology in Troy, Ohio. He has earned more than $14,000 in scholarships to go there. We couldn’t be more proud of him if we tried! He loves working with his hands and was in the Vo-Ag program the entire 4 years of high school.

The last two years of high school he transitioned out of special ed completely and did just fine.

I just wanted someone to know and have hope and encouragement about your young child with Tourette’s. I used to worry so much, needlessly. My son is having and I am sure will have a full and very happy life.

Never give up hope!

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  1. Great story. It’s a marathon, not a sprint. Love your child unconditionally, get him the help he needs, understand there will be a lot of ups and downs, make sure home is a safe haven, work with the school, and do everything you can to make sure he graduates high school with his dignity and self-worth intact. It’s hard, but the results are so, so worth it. Congratulations on a great outcome – and it’s only the beginning, I’m sure.

  2. Thank you! I needed to hear this today. My guy just turned 8 and it is hard! Thank you for the hope!

  3. All of you are most welcome! It gives me great satisfaction as well to share Evans story so far.. The things I feared the most never came true. It was a lot of work on his part, and on ours, and for sure was not without days where I thought I would lose my mind! I am sure he did too! One day in particular, he had a tic where he would turn his head around over and over so far that his shoulder was killing him and he was crying to us to make it stop on the floor. I thought I would have to take him to the ER but called the Neurologist instead. He said to give him a hot shower, and something warm (moist heat) and put him to bed. That it would stop once he fell asleep and it did, and did not return. Those days and nights are hard for sure. There was the time that the people running our Public Library laughed at him after he walked away from trying to check out his books, and I freaked out. Called the person in charge, and everyone who worked at the library had to take classes on Tourettes and be taught that that reaction on the part of staff was not acceptable! (duh, right?) Everything was not all roses but if you asked me today if I would want Evan to change one thing about him or his life I would say no. His struggles and his work have definitely made him the young man he is today. That’s the best gift. Keep striving to do your best for your child, you will not regret it!

  4. Can’t thank you enough for this post, so reassuring to read this as we struggle with wondering how things will turn out for our 8 year old ticcer. We too are working with speech, OT and behavioral therapists and I see it making a difference. It is work, and stories like this really give me hope that it will pay off and he will turn into a well adjusted adult.

    • Indeed, it is nice to hear something positive. So much in the TS world is about what’s wrong, what schools aren’t doing, what kids are being bullied, what organization wants money … there is not enough of this. Thank you Debbie for this wonderful reminder that our kids CAN and DO succeed!!!

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