cri du chat syndrome | Lessons from my daughter

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!

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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?

This post is not about Josh….. it’s about another boy! Let’s call him Brad!

As long as I can remember, Emily has said that school is awesome!

Whenever the “awesome” is not the first word she says when I pick her up, it means something happened. As she is getting older and has more words, it is easier to figure out what happened but back when she was 9…. this was not an easy task!

Going back to 3rd grade… suddenly Emily is not quite herself and I can’t figure out why. Lucky for me, I take Emily to school every morning and I walk her in the school to get her set-up for the day.

It’s been a couple of days of Emily acting a little strange…

As I am dropping her off, her teacher asked me if Emily told me what happened…

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Now I am quite concerned.

It took the teacher a day or so to figure it out herself as Emily didn’t speak-up.

Brad was sitting behind Emily in the class. Emily’s hair at the time were always pulled back in a ponytail. This little boy had the whole class convinced he had a lighter in his pocket and he told Emily that he was going to light her hair on fire… Of all the things he could have said to her, to set her up on fire was probably the worst.

Emily is afraid of fire, I have a friend who has a theory as to why but that is a story for another time. Since Emily was little, we haven’t been able to have candles at home or at a restaurant… She is REALLY afraid of fire!!!

Can you imagine her discomfort when Brad told her he was going to set her up on fire? Who says things like that???

All the students knew Emily was nervous and scared but all of them kept to themselves except one little girl… at the end of the day, she told the teacher why Emily was acting so strange.

Tank you little girl! I don’t know who you are and Emily couldn’t tell me who sat next to her but for that little girl I am grateful!

Once we knew what happened, the teacher separated Emily and Brad. I thought I was clear in my expectation that Brad was not to come near Emily. Emily had a full-time teacher assistant for her in the classroom… you would think it would be simple to keep an eye on her.

A couple of days later, when I picked Emily up after school, she was glowing. Her day had been awesome, Brad was her friend once again and even told her he LOVED her…..

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My heart was racing so fast and I was so upset at that statement that it took all my years of drama class to act as if I was happy for her. I didn’t want Emily to think she did something wrong but I needed to get to the bottom of this. When did he talk to her, where was her teacher and her T.A. Was anyone else around….

The next day, I arranged to meet with her teacher before class. She (the teacher) was glad to report that Brad was himself again and had a talk with Emily…

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Am I the only one seeing something extremely wrong here…?

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At that point my blood was boiling! I was so mad that it took me some deep breathing exercises to calm down. Than I ask Emily’s teacher if she was aware of the family violence cycle…. You know, I love you, I hurt you, I bring you flowers, I apologize, I love you again…. the next step is more hurt and normally it gets worst…

She looked at me puzzled… Puzzled?!?!?!

Now, I don’t know Brad’s family but at this point in my head, I do not want him near my daughter. Emily is vulnerable, she only sees the good in people and she is a target… a perfect target!!!

I believe that day that my concerns finally registered with Emily’s teacher and with her T.A.

Brad was kept at a distance, I tried to the best of my abilities to explain to Emily that Brad was not a friend and that she needed to stay away from him. That at anytime, the kid who said he was going to set her up on fire could be back, that this “I love you” phase was cute but not permanent. I think she understood… But I will never know.

The following year, he wasn’t in her class and they haven’t shared a class since. They haven’t shared any activities.

We don’t know where Brad is and I think it is better this way! I don’t know if they would recognize each other…

Josh was one type of bully and Brad was a completely different story but still a bully!!!

Did I over-react? Should I have given him another chance to get close to Emily? What would you have done?