In the year 2011, Tourette Canada released a set of videos about real people Tourette Syndrome with the help our award-winning advertising partner, Saatchi & Saatchi Canada. In this blog series, we check-in with the people from these videos to see where they are now and how the videos affected them.
In our first post in this series, we connect with Danielle. You may remember Danielle from this @Random video about her son Ethan. Please check back on the blog on Friday when we will share our interview with Ethan.
Tourette Canada: You said you had trouble disclosing your TS and that your son helped you with this. How do you feel today? Are you still reluctant to speak about your Tourette?
Danielle: When I speak about my TS it is generally related to Ethan. Or when I was a child. I still do have tics, and sometimes I will say something to my husband about having how they are bothering lately, or to Ethan. To be honest, even though I consider myself an advocate within the TS community, I don’t remember the last time I spoke to a stranger about my TS. Maybe that’s a good thing? Maybe it’s because it’s not very noticeable so I never felt the direct need to.
TC: How did others respond once the @random film about you and your son was released?
D: The support from the people who saw it was mostly amazing! I think we still have some people in our family who just don’t see that TS shows itself in many different ways. And that may always be the case. We, as in society, tend to want to show off our successes and hide what society perceives as failures, and being different is a failure to many. This documentary was a beautiful, shocking, and very truthful way to show the world about TS and its ups and downs and its successes!
TC: Your son is older now. How has this affected his Tourette, if at all?
D: I think like with most things, he has a better understanding of his TS. The problem is I almost think it is too late. Ethan presented very well in school, for the most part. He was, a good looking, athletic, funny boy. I think he had to learn all this at his own expense in a way. It’s tough enough being a kid in school, but then having to navigate the education system when you have TS, LD, and ADD and are in need of supports it is a trillion times harder.
TC: As a mother, how did it feel to learn your son had TS?
D: To be honest, I was relieved because I was undiagnosed until I was 24. I remember going through my childhood wondering what the heck could be wrong with me? And I was afraid to say anything to anyone about it because my family would just laugh at me. I would get picked on, or teased at times, but I think I was my own worst enemy. The things I would say to myself I could never imagine Ethan saying about himself. So I was thankful and relieved that we could tell him that it was not him, that he not “crazy” .
TC: What would you say to other mothers who have learned their son or daughter has TS?
D: I would tell them I am sorry. And this is really shitty! I would tell them to take care of themselves because they are important too! TS is different in everybody, so take people’s advice on how to deal with their situation with a grain of salt. Listen to your gut. It’s usually right. That’s how I got my sons diagnosis at 5. And learn to laugh at life because there will be time when that is all you have left. And I would let them know I am here if they need to vent, or need help in any way. I have met some great friends through the this TS community!
TC: When you watch the @random film about Ethan back today, how does it make you feel?
D: I feel so proud of him! He has grown up to be such a great young man in such a short time. He graduated in June, and is taking some time off to figure out what he wants to do with his life. He is thinking about volunteering overseas somewhere! Life is all about experiences, so we totally support that. I think having the privilege to be in this film and help others has allowed Ethan to feel very differently about his TS. Ethan is extremely humble about achievements for the most part, and most of his friends and teachers etc. would not know that he was in that documentary if it wasn’t for me and my husband. He said he didn’t want to brag about this opportunity. He just quietly goes around and does these things. Just like his rugby accomplishments, or music accomplishments. Anyways, I watch this documentary, and I feel the same way I felt then – that he is going to be ok.
Let us know what you think down below!