One of the hardest things about being a parent of a child with Tourette Syndrome is explaining what neurological and involuntary means repeatedly… I’d be lying if I said I wasn’t surprised how many grown adults still struggle with understanding what that actually means even when we break it down in the the most simple terms and explanations. Most CHILDREN understand this better! Why? Because kids are awesome and adults can be… judgmental and biased. We sure could all learn a LOT from kids. When something is involuntary… that means someone is UNABLE to CONTROL it. This alone should be all we need to say to make sure Ellie’s disability is met with respect and kindness but that’s not always the case.
When we in great length explain that coprolalia (Ellie’s cussing aspect of Tourette Syndrome) is out of her control… people still don’t get it. We don’t need their approval or critical thinking skills to be in tact for US to know the truth (more.. people.. need.. to.. trust.. SCIENCE), but there is just some weird barrier there for a lot of grown ups we were not expecting to experience.
Here are some very simple ways to understand what a tic feels like for someone with Tourette Syndrome, and what makes it so unstoppable and so uncontrollable:
Tics can feel as natural as blinking… so what would it feel like NOT to blink? How long could you last before it becomes really uncomfortable?
What about a hiccup? Have you ever tried to hold back or stop a hiccup and it comes out even more painful than it needed to, because you suppressed it?
Or a burp. Or an itch that you needed to scratch. These tics are like uncontrollable urges that NEED to happen in order for the person to feel “alleviated” so holding them back can be physically painful… not to mention emotionally uncomfortable as well.
This cycle of urge and alleviation is what makes tics uncontrollable and involuntary. So yes… even the vocal tics including cuss words are a part of this! We can’t understand what it’s like to experience this but we CAN CHOOSE to rewire our brains to view these tics as INVOLUNTARY and NOT BEHAVIORAL.
YES! Us!!!! All of us without Tourette Syndrome, we have the ability to rewire our own brains to view these tics we witness (jumping, snapping, screaming, cussing, kicking, neck switching, ALL OF IT) as involuntary. It is SO second nature to see a “bad” or “annoying” action and say.. that’s a choice! What a bad choice. What a bad kid. What bad parents. But the second you examine your own biases and abled-body privilege, check it at the door and make yourself see a hidden disability for what it is… you become a hero and a helper. WE NEED more heroes and helpers in this world especially when it comes to kids and adults with hidden disabilities.
Before we knew about Ellie’s Tourette Syndrome, I would wonder.. why does she make so much noise? It’s driving me crazy! So much clicking and snapping and sniffing and throat clearing and it was just… hard to tolerate. The second that I registered that these behaviors were actually tics and that she may actually have a neurological disorder… everything about the way I saw and listened to these tics changed. Is it still hard on the days when she is just going and going and going? YES… but my actual view of her and how I process her tics is different and she needs that from me. She NEEDS my worldview of her tics to be educated, mature and understanding.
Tics are not behavioral, they are not choices. They are involuntary and neurological. Be a helper and hero and support people who have to deal with hidden disabilities and tell them… I BELIEVE YOU and I will SUPPORT YOU!