{"id":1194,"date":"2012-08-20T08:00:08","date_gmt":"2012-08-20T12:00:08","guid":{"rendered":"https:\/\/njcts.org\/tsparents\/?p=1194"},"modified":"2012-08-20T08:00:08","modified_gmt":"2012-08-20T12:00:08","slug":"tourette-syndrome-roller-coaster-ride-finally-on-the-upswing","status":"publish","type":"post","link":"https:\/\/njcts.org\/tsparents\/tourette-syndrome-roller-coaster-ride-finally-on-the-upswing\/","title":{"rendered":"Tourette Syndrome roller-coaster ride finally on the upswing"},"content":{"rendered":"

Today, while having a conversation about Tourette Syndrome, my son brought me to tears.\u00a0 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.<\/p>\n

I will never forget the first time.\u00a0 My son had just been diagnosed and was only 5 years old.\u00a0 He asked me if we could buy him some medicine to make him the same as all the other boys in kindergarten.\u00a0 He asked the question as if he was asking for a cookie.\u00a0 He believed that his father and I could fix anything.\u00a0 Until that point, we probably felt the same way.\u00a0 We were blown away by how helpless we felt when he was first diagnosed.\u00a0 Looking back, it was a very dark time for us.\u00a0 I cried almost every day and read anything I could online about Tourette Syndrome.<\/p>\n

Then, one day my sister told me about the HBO documentary \u201cI Have Tourettes, But Tourettes Doesn\u2019t Have Me.” \u00a0I 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.\u00a0 He was taking control.<\/p>\n

This changed everything for me.\u00a0 I decided that if I couldn\u2019t change my son\u2019s TS, then I would change people\u2019s perception of it.\u00a0 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.<\/p>\n

We had the school nurse go into his classroom and talk about it to his class.\u00a0 The kids were so receptive to it.\u00a0 My husband and I gathered as much information as we could and gave it out to anyone we saw.\u00a0 We even had brochures for the bus drivers.\u00a0 We purchased a copy of the documentary and had the entire staff of my son\u2019s school watch it.\u00a0\u00a0 Every conversation I had always seemed to come back to Tourette Syndrome.\u00a0 We wanted it to be known by everyone.<\/p>\n

\"\"<\/a>Three years later, when my daughter was diagnosed, we were in a much better place.\u00a0 We felt we knew the disorder and what to expect.\u00a0 Our daughter made us so proud when she told us that she wanted to educate her class by herself. \u00a0She was 12 when she was diagnosed and never asked \u201cwhy me?” \u00a0She was excited to teach as many people as she could about this disorder.\u00a0 Things were going great.\u00a0 We had this all under control.<\/p>\n

Then our world turned upside down.\u00a0 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.\u00a0 The co-morbid symptoms of TS became a huge reality for us.\u00a0 Suddenly, our son was dealing with high anxiety, OCD, compulsions, ADD and so many troublesome tics.<\/p>\n

Our son had major problems in school and we found ourselves searching for psychiatrists, therapists and constantly attending meetings at school.\u00a0 Handling problems at school had become a full-time job for me.\u00a0 Things did get much better for him by the end of the school year, but I can\u2019t tell you what a feeling of relief we had when school ended in June.<\/p>\n

During all of this, our daughter had become involved the TSA Youth Ambassador program.\u00a0 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.\u00a0 We also attended a training session at the New Jersey Center for Tourette Syndrome & Associated Disorders<\/a><\/strong> for their Patient-Centered Medical Education program.\u00a0 It is such an empowering feeling to be involved.\u00a0 Suddenly, we are not so helpless.<\/p>\n

\"\"<\/a>And last week, our whole family had the opportunity to meet with Congressman Jon Runyan.\u00a0 We were there with the NJCTS to ask for his support for the proposed TS legislation, bill H.R. 3760. \u00a0It was an awesome experience to be able to share our story with him.<\/p>\n

The other day, my son and I were talking about the meeting.\u00a0 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.\u00a0 I told him that we are hoping to find a cure for TS.\u00a0 He looked at me and said, \u201cI don\u2019t want a cure for TS, TS is what makes me special!\u201d<\/p>\n

My eyes instantly filled.\u00a0 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.\u00a0 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.\u00a0 It is the determination and character he shows every day to overcome his TS that make him special!<\/p>\n

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