{"id":1371,"date":"2012-10-02T12:35:11","date_gmt":"2012-10-02T16:35:11","guid":{"rendered":"https:\/\/njcts.org\/tsparents\/?p=1371"},"modified":"2012-10-02T12:35:11","modified_gmt":"2012-10-02T16:35:11","slug":"a-moms-proud-vantage-point-of-a-daughter-advocating-for-tourette-syndrome","status":"publish","type":"post","link":"https:\/\/njcts.org\/tsparents\/a-moms-proud-vantage-point-of-a-daughter-advocating-for-tourette-syndrome\/","title":{"rendered":"A mom’s proud vantage point of a daughter advocating for Tourette Syndrome"},"content":{"rendered":"

\"\"<\/a>I’m not a blogger.\u00a0I’m not a writer.\u00a0I’m not a poster on social media.\u00a0 I’m just a mom…a proud mom of a child with Tourette Syndrome. And\u00a0last Monday,\u00a0my 15-year old daughter gave a presentation on\u00a0TS to\u00a055 faculty members at her former 4th\/5th grade school.\u00a0\u00a0<\/p>\n

She hasn’t seen most, if any, of these teachers in almost five years. How would she appear to them?\u00a0 Would they notice how tall she is?\u00a0Would they comment on her braceless smile?\u00a0 Or would they catch a glimpse of her quick blinking eyes and small grimaces?\u00a0 Would they notice she has TS, and that’s why she’s presenting to them?\u00a0 They have no idea how prepared she is.<\/p>\n

I sit in the back of the open-spaced media center, leaning up against a bookcase.\u00a0 I can see her entirely from my vantage point.\u00a0\u00a0<\/p>\n

Perfect…just me watching her.\u00a0 I prefer being in the back of the room, where the attention is off of me and she has the stage.\u00a0 She’s comfortable up there gazing at the crowd.\u00a0 The room gets quiet, and you can hear a pin drop.\u00a0 She starts to speak with her sweet voice.\u00a0\u00a0<\/p>\n

She’s confident and assured.\u00a0 She knows her material and knows it well.\u00a0 How could she not. \u00a0She’s been experiencing TS since she was seven.\u00a0 She’s the expert…it’s empowering to be the expert.<\/p>\n

\"\"<\/a>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.\u00a0\u00a0<\/p>\n

She throws in short stories of personal experiences.\u00a0 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.<\/p>\n

She engages the large group in an activity.\u00a0 For one minute she demonstrates to this group of educators what it’s like to have TS. Groans from the audience:<\/p>\n

“That was impossible to do!”<\/p>\n

“Is this what she experiences every day?”<\/p>\n

“Wow…I had no idea.”<\/p><\/blockquote>\n

She smiles big…proudly…like she’s won the 4-foot trophy with the gold statue at the top.\u00a0 “Ah-hah,” she thinks.\u00a0“Now they get it!\u00a0 Now they have a glimpse into my world!\u00a0 Maybe they’ll be more patient and understanding with others experiencing TS.”<\/p>\n

She comes to the last slide.\u00a0 As the mom, I think I’m going to be better this time.\u00a0 I can never make it past this last slide without a quivering of the lip or pooling in my eyes.\u00a0 But this time I’m going to be better.\u00a0 She’s honest and genuine when she speaks.\u00a0 She’s not angry, but sweet…oh so sweet.\u00a0 She reads the slide:<\/p>\n

“I’m sorry that TS bothers you.\u00a0 It bothers me more.”<\/p><\/blockquote>\n

Swoosh!\u00a0 The tears fall down my cheeks.\u00a0 Does anyone see…I hope not.\u00a0 I quickly pat my face and sniffle my nose.\u00a0 She gets me every time.\u00a0 I’m so proud of her…I can tell others are, too, when they approach her.\u00a0 She is remarkable, this daughter of mine.\u00a0 How lucky I am that she is who she is —\u00a0TS and all.\u00a0\u00a0<\/p>\n

I’m so proud.<\/p>\n

\n\t\t\t
\n\t\t\t <\/div><\/div>\n\t\t