Although I never knew what Tourette Syndrome was until I was in my 30's, I have become very familiar with this disorder in the past 4 or 5 years.
Let me introduce to you my son. Dakota is the coolest little guy! Very handsome, a hard worker for a 10 year old, a mechanical problem solver, and he has a heart of gold!
When he was 6 or 7, I received a phone call from his teacher, letting me know that he appeared to be having trouble with his eyes. He was blinking a little different than normal. I thought maybe he had been playing his favorite computer games a little too much.
Within a few weeks / months of this phone call, Dakota's body started jerking, of all places, in his backside. The family noticed because it was quite attention-grabbing. But with a most serious face, my little man told me something along the lines of, “I'm not doing that, Mom. I still did not know what Tourette's was, but realized that he was very serious and telling me the truth.
I started to watch Dakota after this, and noticed how he would be concentrating intentionally on something, and continue to have the jerking movement, without his even realizing it. I pointed this out to my husband.
Fortunately, my husband had heard of Tourette's, and we looked some information up about it on the internet. My initial reaction was to cry-I knew nothing about this new name in my house. But to my great relief, I learned that it is not a terminal illness, and that it is not harmful, unless someone has a severe condition with Tourette's, and they can possibly harm themselves.
So what is Tourette Syndrome? It is a neurological disorder that causes involuntary movements in a person. It also affects sounds that they make. What feels very unique to me about this disorder is that that moves around the body. For a few weeks, you may see severe eye blinking, and then it moves on to body jerking, and then it moves on to facial contourions, and then it moves on to severe neck and shoulder movement.
Some of the other things I've learned about Tourette's:
– It affects more males than females, and usually begins to show up near the ages of 6-10.
– Some people “outgrow” Tourette's in adulthood.
– It is not a terminal illness that will shorten a person's lifespan.
– Most people do not need medication for this disorder-only if it causes them injury in their lives.
You can read much more about it at http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm . I found this website's information very informative, and after 4 years of living with Tourette's, learned a few more things about the reasons my son probably feels the way he does about certain things.
Since many of us most likely know someone who is affected by Tourette Syndrome, I would like to offer suggestions on how to help a person who has Tourette's, and their family members or friends, as well.
Never joke about Tourette Syndrome. It is no funnier than a person with diabetes, or who is in a wheelchair. People with Tourette's did not choose to be born with this disorder. The two times I've heard “outsiders” talking about Tourette's in my 30's, they were both making fun. I do find this offensive.
You absolutely must have patience with a person who has Tourette's. There are times when Dakota will talk to me, and he stops every few words because of involuntary facial complaints. Another time, believe it or not, every few steps he took, he felt the need to pull his sock up. As silly as it may seem to us, we need to remember that the person with Tourette's is not seeking attention, and is not consciously doing these things. It would be very rude to interrupt their sentences because of our impatience. We need to have the same patience with their speech as we would with a person who has a sever stuttering problem.
There are times when Dakota clears his throat over and over again, and when small sounds come out continuously when he is not talking. We do not criticizeize or “make” him stop, He can not help it.
Treat a person with Tourette's like a normal human being. Never treat them like they have a contagious illness, or like they are weak, or different. They are not mentally retarded because they have Tourette's. They are just like us, and they have feelings that can be hurt if we treat them like they are mentally retarded or “strange”. My little guy takes regular school courses at his own age level, loves to help his dad stack firewood, loves to play in the woods, eats like a horse, has a lot of energy, likes to ride four-wheelers, has a weekend job helping our neighbors with their pets, and likes anything else any other 10 year old boy does! He is a friendly young man, and has lots of friends!
Do not be afraid of the subject if Tourette's comes up in conversation. It is not something to dwell on, but is not something to avoid. I recently learned that a person with Tourette's can have depression and a few other related emotions. The person with the disorder may feel the need to talk about it sometimes. They may need your reassurance that they are great just the way they are! Avoiding the subject when it is brought up may also make them feel like a person with cancer — a subject that people want to stay in denial about.
Relaxing around a person with Tourette's is the best thing we can all do. We can all do our part and treat them the way we would like to be treated.