Home » Life lesson » Introduction to Cri du Chat Syndrome

Introduction to Cri du Chat Syndrome

A month ago, I shared the Cri du chat awareness video with Emily’s resource teacher.

Emily appears in this video 4 times which, to her, is the equivalent of being a movie star!

……

Since she was little, I have allowed Emily to make her own decisions.  I have allowed her to fall, to get hurt sometimes, to taste vinegar and lemon juice…..  but most importantly, I have allowed her to learn how to make a decision!

Within a couple of days of us having the awareness video, she told me she wanted to present it to her class….

Wow!!!

I didn’t see that one coming.

Emily knows she has a rare syndrome, she knows she is different and she knows that different is awesome because normal is boring!!!  🙂

Sometimes, she is sad about being different… she wants friends and a boyfriend but quickly she’s back being her happy self…

Emily, to my knowledge, has never talked about her syndrome at school.

Where we live, kids with special needs are included in regular class.  This means Emily is in a regular 8th grade class…  the kids obviously know she is different but I have no idea if they know how much she’s achieved in her life.

Around the same time as Emily decided she wanted to share the video with her class, she was assigned an ELA (English Language Art) project and decided to make it about her syndrome.  She  decided to make a brochure about the 2013 conference in New York City.  We printed all the materials that was available to us and sent it to school with her.  She worked with her EA (Educational Assistant) on building a brochure.

Yesterday, there was a note in Emily’s communication book, her presentation date is June 12th 8:30am and she will introduce the awareness video before talking about her diagnosis and her upcoming trip to NYC, including the conference!

I am so nervous right now!

I will be there, I will try to the best of my abilities to make a video of Emily standing in front of her classmates and talk about herself, her syndrome, her reality!!!

I will be there for her if she gets questions that she can’t handle…  I will be there for her regardless of how it goes…

Remember my public speaking post…..?  How scared I was…. this tops it!  This is beyond anything I ever though I would see one day!  Between now and June 12th at 8:30am… I have to reach into my drama class experience once again and act as if everything is fine…. as if I am not nervous about this new adventure…

I am not afraid that she will not do well, I am worried about her classmates reactions…

Please send positive energy our way so those 14 year old react like friends to Emily’s efforts and achievements…

Would let your child open up like that to their classmates?

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11 thoughts on “Introduction to Cri du Chat Syndrome

  1. Bravo!! Mom and Emily!!! I look forward to hearing about the presentation and please congratulate Emily for her creative skills…she IS a movie star!! May I reblog this post?

  2. Pingback: Able Sail | Lessons from my daughter

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