When someone is diagnosed with Tourettes Syndrome, it very rarely comes as just Tourettes. Tourettes is accompanied by a variation of the following; OCD, Anxiety, ADD, ADHD, Learning Difficulties, Sleeping Problems and Mood regulating issues.
The person does not have ALL of these accompanying issues, but they can have any combination tag along.
Hunter has Tourettes Syndrome with OCD and Anxiety Disorder. The first time we noticed something unusual he was 3 years old. He would repeatedly wipe his mouth with his right hand and it happened so often that his lips dried out and he would get sores. We tried telling him to stop, but that only seemed to make it worse. Also at the same time, we were noticing that he seemed to sort his toys. He would line up all of his toy cars in a perfect line, first sorting them by color, and then branching them off of each color in size and type. Our play room floor looked like a web of cars. He would also do the same with matching cards, he would lay them in order going outward. At his Dr's appointment I brought all of this up to his pediatrician. I also mentioned that Hunter would make strange throat noises and if his throwing fits over very little things were normal. They were not. She sent a refferal to the pediatric neurologist and from there he was diagnosed with Tourettes. We were also sent to a Pediatric Psychiatrist where he was further diagnosed with the accompanying OCD and Anxiety.
The Tourettes that is usually shown on television is Coprolalia. This is the very rare form of Tourettes where the person will say profanity or words that are not generally appropriate. Only about 10-15% of vocal tic cases will say inappropriate words.
The hopeful news is that while Tics intensify in ages 8-10 years, they can almost totally disappear after puberty. Only 1 in every 160 children ages 5-17 have Tourettes, and is 3 times more common in boys than girls.
My first experience with Tourettes was when I was 21 years old. I was dating a guy who's daughter had Tourettes syndrome. Her tics were mostly vocal, but it gave me a foundation of understanding and empathy that would later prepare me at least in a small way for what was to come with my own son.
Hunter's tics:
Vocal:
-Throat Clearing
-Snorting
-First part of Jurrasic Park theme song (ya..really)
Physical:
Arm flapping
Face grimmacing
Eye blinking
Because of his OCD, he self soothes by having a routine set in his head of how he wants an activity to go.
Example: "I want to walk into the elevator, and press the button to go to the 2nd floor."
What goes wrong: He steps in the elevator thats filled with people who are looking at him, now he's too scared to press the button. People are patiently waiting for him to press the button, he's still not moving. Nurse pressed the button for him. His routine has been disrupted. This triggers a hysterical fit, as well as activates all of his Tics, both vocal and physical. He begins to obsess, and is unable to speak any other words other that "I wanted to push the button" in between tics and screams for the next 45mins to an Hour. Distractions do not help, comforting him does not help, he can't focus, and I refuse to use electronics as a distraction.
Example 2: Hunter is given a 2 min break between assesments to play toys. He wants to play with the toy cake in the play kitchen. It doesnt matter if the alarm for 2 minutes being done goes off, what's most important to him in his head is that he hasn't finished slicing all the pieces and putting a candle on each and then each slice on a plate. He has set in his mind what he wants accomplished, and the priority is finishing it. If I were to interrupt this, he would have an anxiety attack, or fit.
I never know what will trigger him, because I can't see inside his brain at the routine he has set up for himself. I know that every morning I have to kiss him goodbye three times, and one of those times has to be on his palm because of the story with a raccoon that we read called the Kissing Hand. I know that he has to unbuckle his own seat belt, that if we point out an airplane or fire truck or construction crane, or lizard on a hike, that he better be able to see it easily otherwise if we pass it and he didnt see it, that is another anxiety attack. I know that he's so terrified of Bees that he thinks all flying insects are bees, including butterflies and he will run away screaming hysterically from a monarch until I hold him and calm him to see its actually a butterfly.
THIS is my every day, this is HIS every day. This is Tourettes. If there is one thing I could ask of anyone reading this, is that when you see a child throwing what looks like a tantrum in public, maybe even over a toy or whatever, please do not be quick to judge them. Hunter melts down in Target often and I'm positive that people look at us and think he is spoiled. I feel the looks, the glares. Don't share those videos of "This is why I spank my kids" on facebook and youtube of kids throwing tantrums. Life is hard for every one of us in a different way. Every time we go out somewhere, someone remarks about my son's tics... please try to keep your comments to yourself. I am nearly always one comment away from my own emotional breakdown.
Its the start of Tourettes Awareness Month.. Keep my baby in mind this month.
