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Tourette Syndrome roller-coaster ride finally on the upswing

Today, while having a conversation about Tourette Syndrome, my son brought me to tears.  As most parents of TS kids can imagine, this was not the first time I have been brought to tears with regards to his TS.

I will never forget the first time.  My son had just been diagnosed and was only 5 years old.  He asked me if we could buy him some medicine to make him the same as all the other boys in kindergarten.  He asked the question as if he was asking for a cookie.  He believed that his father and I could fix anything.  Until that point, we probably felt the same way.  We were blown away by how helpless we felt when he was first diagnosed.  Looking back, it was a very dark time for us.  I cried almost every day and read anything I could online about Tourette Syndrome.

Then, one day my sister told me about the HBO documentary “I Have Tourettes, But Tourettes Doesn’t Have Me.”  I watched this and noticed that the happiest child in the documentary was the boy who decided he was going to educate as many people as he could.  He was taking control.

This changed everything for me.  I decided that if I couldn’t change my son’s TS, then I would change people’s perception of it.  I wanted to educate as many people as I could so that when people looked at my son they would understand that he had Tourette and not just stare at him.

We had the school nurse go into his classroom and talk about it to his class.  The kids were so receptive to it.  My husband and I gathered as much information as we could and gave it out to anyone we saw.  We even had brochures for the bus drivers.  We purchased a copy of the documentary and had the entire staff of my son’s school watch it.   Every conversation I had always seemed to come back to Tourette Syndrome.  We wanted it to be known by everyone.

Three years later, when my daughter was diagnosed, we were in a much better place.  We felt we knew the disorder and what to expect.  Our daughter made us so proud when she told us that she wanted to educate her class by herself.  She was 12 when she was diagnosed and never asked “why me?”  She was excited to teach as many people as she could about this disorder.  Things were going great.  We had this all under control.

Then our world turned upside down.  At the beginning of the school year, we had two deaths in the family in a very short period of time which triggered all kinds of problems.  The co-morbid symptoms of TS became a huge reality for us.  Suddenly, our son was dealing with high anxiety, OCD, compulsions, ADD and so many troublesome tics.

Our son had major problems in school and we found ourselves searching for psychiatrists, therapists and constantly attending meetings at school.  Handling problems at school had become a full-time job for me.  Things did get much better for him by the end of the school year, but I can’t tell you what a feeling of relief we had when school ended in June.

During all of this, our daughter had become involved the TSA Youth Ambassador program.  She and I went to the conference in Washington, D.C., and had the opportunity to meet with Senators Robert Menendez and Frank Lautenberg from New Jersey.  We also attended a training session at the New Jersey Center for Tourette Syndrome & Associated Disorders for their Patient-Centered Medical Education program.  It is such an empowering feeling to be involved.  Suddenly, we are not so helpless.

And last week, our whole family had the opportunity to meet with Congressman Jon Runyan.  We were there with the NJCTS to ask for his support for the proposed TS legislation, bill H.R. 3760.  It was an awesome experience to be able to share our story with him.

The other day, my son and I were talking about the meeting.  I explained to my son that the reason for meetings like this is to ask for support so that there can be more research into TS.  I told him that we are hoping to find a cure for TS.  He looked at me and said, “I don’t want a cure for TS, TS is what makes me special!”

My eyes instantly filled.  After the awful year that he had in school, I could not believe that he said this! This gave me all the inspiration I needed.  I am eager to continue meeting with our officials so that when a cure is found, my son can see that TS does not make him special.  It is the determination and character he shows every day to overcome his TS that make him special!

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3 Comments

  1. What a great story! We have to be our children’s biggest advocates and with knowledge there is power. My son also was diagnosed at 5. He is now 12 and has been giving mini-lessons to his class since 3rd grade on Tourettes along with the school counselor/nurse. The feedback was amazing and his peers understand now and he has wonderful support from them and the staff. Congratulations on your continuing success educating the public on this disorder 🙂

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