When you become a parent, you dream of all the experiences and milestones you’re going to encounter with your child. From the time they’re in the womb you imagine and you daydream all about how great parenting is going to be. Then, reality eventually kicks in and you realize that perhaps it’s not as pristine and clean cut as you imagined, and that’s ok. What I can guarantee you, is that most of us do not daydream about our children ever having Tourette’s Syndrome.
At first, when we went through the process of my son’s ADHD diagnosis, it was quite the battle which you can read about here. I went through a gazillion stages of grief in about 15 minutes, every day. I got over it, though. Next up, how to deal with an additional diagnosis of Tourette’s Syndrome.
Tourette’s Syndrome as defined by National Institute of Health (NIH) “a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.” Ok, that seems simple enough, but what does it really mean? Exactly what it says. My son makes sounds and movements that he can’t control. I really didn’t know much about Tourette’s besides all the nonsense I’d seen in movies. So, I am going to share the facts of TS that we’ve experienced personally and dispel all the nonsense.
It’s Not All Potty Mouth
Despite representation in movies, everyone with TS does not scream obscenities (coprolalia) at unsuspecting people passing by. Verbal tics can manifest in a vast range of ways. My son started with a cough, humming and now whistling. While it’s annoying and sometimes disruptive depending on where we are; it’s certainly not dramatic enough where I’m apologizing to people all the time. (This does not in anyway discount the fact that cursing is a real tic for some people with TS).
Don’t Break Out the Body Armour Just Yet
Just like verbal tics, motor tics can come in different forms as well. While flailing limbs can occur, it’s not that way for everyone. My son simply had a jerk motion he’d do with his head; like tossing back a shot. I’ll admit, it was a bit weird to see him do it, but in reality, it was harmless so I just let him do it.
No Need to Talk Slow
In no way shape or form is TS an indication of a person’s intelligence. My son is an honor roll student even with ADHD and TS. He is an avid reader and is on a higher grade level than the grade he’s actually in. He is like my little walking encyclopedia of random scientific facts and I love it. No need to feel sympathetic to his plight because we’re not sorry.
It’s Not a Crazy Thing
TS is not a mental disorder like many people believe. Though it is often diagnosed by a psychiatrist , it’s not something that is treated like a mental health issue. TS is actually a neurological disorder.
No Folks He Can’t Just Use the Force
As much as my little guy adores Star Wars, he can’t use his Jedi mind tricks to suppress his tics. It’s like having an itch you have to scratch. While he might be able to suppress it for a little while; eventually he’s going to “scratch”. Tics are not something people with TS can just control with willpower. Sorry to disappoint.
While there are resources galore about TS, the reality is every person’s condition is different. There are no hard and cold facts regarding a prognosis. He could outgrow it. He could carry it into adulthood. There’s no way to really know. The Most important lesson we’ve taken away from this experience? Take it one day at a time. While it can be a nuisance, it’s certainly not the end of the world. What my husband and I care about at the end of the day is that he is a happy, well-adjusted kid just like anyone else’s child.
*For more information on Tourette’s Syndrome check out Tourette Association of America.
Such a great article! Thank you for sharing this information with everyone!
When my son was 8 or 9 he started having tics that I did not understand. He did the neck thing like you described with your son. When I would ask him why he was doing it, he kept saying that he couldn’t help it and that his body was telling him to do it. I remember not always handling it as gracefully as you clearly have with your son. I didn’t understand it at all and wanted it to stop!
We took him to the doctor and he told us to keep an eye on him and that many kids at that age develop tics to deal with their body developing… and it usually goes away. It did. I don’t remember when it stopped, but it did go away.
I just wish I would have handled it better while he was going through it.
Aww thank you Jennifer! I think I recognized it because I had my own tics at his age, and I still have them as an adult just not as bad. When it first started happening I was annoyed by the little things he was doing, then it dawned on me “hey you did this type of stuff too.” He’s being treated for the ADHD but the medication he’s taking just so happens to treat the tics too. I’m sure this is just the beginning of the journey with him but I do feel better knowing that it doesn’t mean he’ll have it forever. I definitely don’t think I’m handling it gracefully lol, I feel like we’re just stumbling thru it.
Hands down one of the most helpful blog posts I’ve read in awhile. I learned a couple things I didn’t know about TS. Thanks for sharing, Alicia. You and your son are lucky to have each other!
Have you ladies tried essential oil remedy, if yes did it work, and could you tell me the meds he/she is taking for the tics.?