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A mom’s proud vantage point of a daughter advocating for Tourette Syndrome

I’m not a blogger. I’m not a writer. I’m not a poster on social media.  I’m just a mom…a proud mom of a child with Tourette Syndrome. And last Monday, my 15-year old daughter gave a presentation on TS to 55 faculty members at her former 4th/5th grade school.  

She hasn’t seen most, if any, of these teachers in almost five years. How would she appear to them?  Would they notice how tall she is? Would they comment on her braceless smile?  Or would they catch a glimpse of her quick blinking eyes and small grimaces?  Would they notice she has TS, and that’s why she’s presenting to them?  They have no idea how prepared she is.

I sit in the back of the open-spaced media center, leaning up against a bookcase.  I can see her entirely from my vantage point.  

Perfect…just me watching her.  I prefer being in the back of the room, where the attention is off of me and she has the stage.  She’s comfortable up there gazing at the crowd.  The room gets quiet, and you can hear a pin drop.  She starts to speak with her sweet voice.  

She’s confident and assured.  She knows her material and knows it well.  How could she not.  She’s been experiencing TS since she was seven.  She’s the expert…it’s empowering to be the expert.

We all watch as she moves from slide to slide, explaining in detail what Tourette Syndrome is, how it’s genetic and how it can appear.  

She throws in short stories of personal experiences.  She giggles…not an inappropriate chortle, but a happy one because she’s on THIS side of TS…the expert side…the side that knows how far she’s come and wants the world to know that she can beat TS; it doesn’t have to beat her.

She engages the large group in an activity.  For one minute she demonstrates to this group of educators what it’s like to have TS. Groans from the audience:

“That was impossible to do!”

“Is this what she experiences every day?”

“Wow…I had no idea.”

She smiles big…proudly…like she’s won the 4-foot trophy with the gold statue at the top.  “Ah-hah,” she thinks. “Now they get it!  Now they have a glimpse into my world!  Maybe they’ll be more patient and understanding with others experiencing TS.”

She comes to the last slide.  As the mom, I think I’m going to be better this time.  I can never make it past this last slide without a quivering of the lip or pooling in my eyes.  But this time I’m going to be better.  She’s honest and genuine when she speaks.  She’s not angry, but sweet…oh so sweet.  She reads the slide:

“I’m sorry that TS bothers you.  It bothers me more.”

Swoosh!  The tears fall down my cheeks.  Does anyone see…I hope not.  I quickly pat my face and sniffle my nose.  She gets me every time.  I’m so proud of her…I can tell others are, too, when they approach her.  She is remarkable, this daughter of mine.  How lucky I am that she is who she is — TS and all.  

I’m so proud.

0 Comments

  1. OMG!!!! Your daughter is awesome!!!!!! Would you guys come to Milford-PA to do a presentation at my 8 years old daughter school? Please let me know! Thank you!!!

    • Not sure where Milford, PA is but we do have PA Youth Ambassadors that do exactly what Sarah does for TS. Based on where you live, I can see if I can get someone out to your school. It really has made a difference.

        • *far northEast* …Ok, I really want this to happen. What is the next step? What do I have to do? I already spoke with the head of the S.E. Department at her school and they are ok with it! Education to all around not only my daughter but all the kids out there with TS, is the best thing we can do to help them. <3 Thank you so much!!

          • Livia, the bridge crossing from NJ into PA is in the far northwest portion of NJ. :) Milford itself is in the far northeast portion of PA. Anyway, if you are interested in this, please contact the New Jersey Center for Tourette Syndrome at 908-575-7350 to see if they can set this up for you. It’s possible you might be referred to the PA chapter, however. Can’t hurt to ask!

  2. Carole, You should be so proud of her! Sarah is a terrific advocate for all those with TS. I am sure her presentation made an impact on the audience. This kind of advocacy is so important. Keep spreading the word.

    • Barbara, as you well know, the Youth Ambassador program is remarkable! Can’t say enough about all these young men and women who are giving of their time to educate peers and adults on the “real-deal” about TS. We’re so lucky we know two of them!!

  3. This is just wonderful. Good on ya! You should be very proud of your daughter, and I’m sure she’s very proud of you as her mum. She wouldn’t be the way she is today if it wasn’t for you. I’m sure this would have been a rippa of a presentation to watch! Do you have video of it?

    • I haven’t video taped it yet, and am disappointed that I haven’t prepared for that. I hope to soon…great idea…thanks!

      • Carole, if Sarah has another presentation lined up soon, let me know and I’ll make sure I come prepared to videotape it next time. We have the capability for that.

        — Jeff

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