Sibling’s Experience with Tourette Syndrome Helps Enlighten Others

by Dollie Johnson

Imagine the first day of class you walk in feeling anxious and probably a little nervous. As you find a seat and get your belongings situated, you notice that the boy sitting next to you is continuously clearing his throat, or the girl behind you keeps making weird facial expressions.

You might even be at a ball game cheering for your home team when you notice that a man in the seat behind you is mumbling curse words, and every now and then he may get loud enough to where others around him may hear, not just you. If you were to ask any of these people if they are alright, chances are they may just have a sore throat, be mad at the person in front of you, or upset that your team is losing the ball game. However, they might also tell you, “I am sorry if I have bothered you but I have Tourette Syndrome”.

Approximately 200,000 children in the US have a severe form of Tourette’s with as many as 1 in 100 displaying a milder form. Tourette Syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics. Tics have two categories: motor or vocal. Some common motor tics are eye blinking, facial grimacing, jaw movements, head bobbing/jerking, shoulder shrugging, neck stretching and arm jerking. Some common vocal tics are sniffing, throat clearing, grunting, hooting and shouts. Some vocal tics are more complicated and can include words or phrases. Often these words or phrases don’t sound like they are a part of a conversation – the words are barked or grunted and will often appear to be inappropriate. In a minority of cases the words are profane (i.e., swear words, ethnic slurs and other socially unacceptable words or phrases). The cause of Tourette’s syndrome is unknown; however, it is believed to be genetic. The onset is usually between the ages of 3 and 9. Tourette’s is present in all ethnicities and affects males 3 to 4 times more than females.

My brother, Edward Epps, was diagnosed with Tourette Syndrome at the age of three. I was diagnosed with it as well four years later, at the age of five. The beginning of my parents’ journey with Tourette’s was often very difficult. Thirty three years ago, Tourette’s was not a common condition and most people had never heard of it. Not only was my brother misdiagnosed several times, but my parents felt like they had no one and nowhere to turn. Finally, when the right diagnosis was given, the journey of raising a child that has Tourette’s seemed more hopeful. When I was five years old and showing signs of Tourette’s as well, my parents immediately knew what it was. Growing up, my brother was the only other person I knew who “did the same things I did”. Tics are involuntary and cannot be controlled. There were times I would sit and wonder ‘why is my body making me do these things, why am I different?’ It gets even harder when those around you notice, ask and even stare. I had a friend ask her mother once why I got to say bad words and didn’t get in trouble for it. I can look back on the situation and laugh about it now, but when you are a child it is very hard. Not being able to control your actions is a daunting situation.

There is currently no cure for Tourette’s syndrome. The majority of people with Tourette’s do not need medication, and unfortunately there is no one medication that is helpful to all people affected by Tourette’s. Supportive therapy and counseling have proven to be most effective in helping those diagnosed with Tourette’s cope with their tics. Living with Tourette’s is different for everyone and typically does not affect one’s quality of life. It is important for those living with Tourette’s to educate themselves about the disorder and figure out which coping mechanisms work best for themselves.

As my brother and I grew older Tourette’s became more common. I can remember several times parents from our area bringing to our house their children who had just been diagnosed in order to talk with my brother and me about Tourette’s. I’m sure it helped my parents as well to talk to other parents who were also raising a child with Tourette’s. The majority of people with Tourette’s are able to grow up and live happy, normal lives and are able to do and participate in whatever their hearts desire.

My brother and I are now adults with children of our own. Since Tourette’s is hereditary, there is that chance of us passing it along to our children. My children are two years old and 8 months old, but it is unknown if they will have Tourette’s because they are too young to exhibit signs just yet. My brother’s children are ten and five. We believe that his youngest, Braxton, also has Tourette’s. To be diagnosed with Tourette’s one must have motor and vocal tics present for at least one year. We first noticed symptoms in Braxton when he was three; he began to grunt and eventually started shrugging his shoulders. Since then he has had many tics come and go. It is difficult for a child this young to understand what’s going on. His mother, Stacey asked him one day why he was jerking his arm and he said “I don’t know mama, my body is making me do it”.

Although my brother knows what to look for and expect as a parent of a child with Tourette’s, that doesn’t make his job any easier. It is important for parents to be patient and supportive. A kid with Tourette’s is not showing signs of bad behavior and should not get in trouble for what they cannot control. Educating yourself, your child, as well as those around you about the disorder is the best way to handle the situation. Contacting your doctor should always be the first step if your child is showing any signs of concern.