Your child has been diagnosed with Tourette Syndrome (Or you suspect they may have Tourette or some other tic disorder [we can talk about how to get a diagnosis in another post], now what?
One of the most common errors I see parents make when they find out their child has TS is to go batshit crazy with being upset, imagining that their child will now live some terrible life with this terrible syndrome and woe woe woe.
- TS can for sure be challenging, and for some disabling if it is on the more severe end of the scale, but for most people with TS it does not have to be a tragic life. Most people with TS can have fantastic, mostly normal lives! Many of us are gainfully employed assets to our companies, we volunteer to help those in need, we marry our loves, we have children, we just may do it while making noises and weird movements.
- TS Does come with a goody bag of repetitive use injuries, with motor tics we may repeat the same movement thousands of times a day, it hurts! We may express the pain. For most people there are treatments for the physical pain we experience such as nerve blocks, Botox, splints, etc. It’s not fun but it also typically speaking is not life ending.
- Bullying can also be an issue and this is one you CAN help your kiddo with by learning as much as you can about TS from trusted sources (cross check facts because no one person knows all and there is a lot of misinformation!). Once YOU know what TS is and how it works, you can ADVOCATE for your child and teach them how to advocate for themselves! Understanding how to stay calm, and the correct language to use, and being OPEN about their TS will get rid of a LOT of bullying. Bullies only succeed where there is a way in, so seal up the foundational cracks. YES, your child is different, but different is ok!
- Depression can also be an issue – we know we are different. We know people look at us, laugh at us, talk about us, find us annoying. We see it, we hear it… hell it is in MOVIES. The problem with movies, media, etc. is that they still use TS as the butt of far too many jokes, ESPECIALLY Coprolalia (which we will talk about more in depth later). It is OK to laugh at ourselves, and WITH our people but not to be the butt of every stupid TS joke out there. Teach your kids to try and have a sense of humor about their TS, but to also know that when they see or hear upsetting things its ok to talk about it. Try to be their safe space or help find someone who can be. (We often joke about MY TS at home (( my wife and I )) as a way to acknowledge it. My brain is a bit weird, and while it sometimes sucks hard – other times it is just too funny not to laugh at.
NOW – this also brings up the whole “do I tell my child? Maybe he/she can’t handle it, I don’t want them to know they are different!”
My answer here is always YES. Tell your child. WE ALREADY KNOW that we are NOT NORMAL. We already FEEL the eyes, the laughs, the judgments. We already feel ALONE. TELLING your child and being their support means that they are LESS likely to suffer with depression, isolation, bullying, and punishment. ALWAYS tell your child. Learn as much as you can first, find out what TS really is all about. THEN, have the conversation and be honest. “Hey, so you know how you do that thing with your neck? Do you want to know why?” etc. open it up! Believe me without it being open we feel SO MUCH SHAME.
THEN once it is open? DO NOT FOCUS ON YOUR CHILDS TICS! The more attention you draw to the tics, the worse the tics will get. Half the time when we tic, we are unaware we are doing it. YOU are more aware than we are unless it is a tic that hurts. SO, you see me in the corner moving my neck like a giraffe trying to grab that leaf? Just leave it be. I don’t need you to say “Oh man look at what you are doing! Stop it!” etc. IF your child wants to talk about it, be an ear – otherwise do your best to ignore their tics.
Ignoring tics can be challenging because they often look like misbehavior, or intentional, plus they can be annoying as hell! BUT – believe me – telling your child to “Stop it” or giving them shit for it will only make it worse because here is the thing… we cannot stop it no matter what threat you throw at us! It is not a choice even if it looks like it is, so we are suffering and do not need you to punish us on top of that. Imagine how hard that would be? Think about breathing or blinking – now imagine someone telling you to stop it, but you literally cannot stop! You spend all your time focused on it to try and stop it and when you fail (because you will fail) you get punished. ☹ heartbreaking. So, don’t do that.
Talk to your child’s teachers and principal – explain that your child has been diagnosed. It helps to take information packets with you to leave with them too! Encourage them to ask questions if they have any, and to not punish the child’s behaviors. Sometimes the teachers will still punish your child, if that is the case you may need to change schools, home school, or work it out with the school. Unfortunately, every human will handle it differently.
This month I will post links to different websites, orgs, etc. that can help with educating schools, family members, etc. who need it. SOME will even have an advocate contact the school and teach them.
ALSO, it can be quite helpful if your child has been open with classmates! This helps to protect from bullying and pave the way to open communication and understanding. Some kids like to give a little talk or send an email out etc. that explain who they are and that they have TS before the first day of school.
I will ALWAYS advocate for being OPEN about having Tourette Syndrome, it breaks down those judgments and walls, and helps society to understand us and accept us for who we are.
Thanks for reading!