Cri du chat | 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?

I don’t have a lot of “me” time and lately I have used all of it to write this blog!

In a typical week, I would say I have almost 2 hours to myself on Saturday morning between 9 and 11am when Emily is working with her tutor.

During that time, I could go to the market, take the dog to the park, pick-up some grocery, start the laundry….. so many things I could be doing but instead of all that….

Instead of all that….. I drive to a small coffee shop not far from the Sylvan learning Centre and I order a breakfast sandwich (with bacon) and a cafe latte.

I sit there and I read, plan vacations or just play with my phone. Once my food and drink are done, I get back to my car and go sit in the parking lot by the Centre and stay there until Emily is ready to come home.

For me to be alone is a luxury! I have so little of this time with myself that I treasure this 2 hours a week!

I don’t really mind the fact that I always have someone with me, I just miss the little things…. stretching in a bed on my own, sitting on the toilet and expecting the door to the bathroom to stay closed, showering, getting dress…..!

Normally my 2 hour is spent really selflessly, reading something of absolutely no importance. That’s how I want to spend those 2 hours….

This morning, I decided that I needed to fill this form the school sent home a couple of weeks ago….. maybe a month ago….

It’s not a form, it’s a document….. 15 pages, 30-35 items per page. All actions that I need to determine if Emily can or can’t do.

It’s called a Function Independent Skills Handbook (FISH assessment)

It’s meant to help determine what Emily’s teacher & resource teacher will be focusing on next year when she transitions to High School.

It’s depressing… not as depressing as the last time I filled it and definitely not nearly as depressing as the first ever assessment we filled for Emily but still…

When I started answering the questions, I figured I should wait until it was cocktail time to do this but I had ignored it long enough so I just kept going…

Well, it is official…. she can’t cook, do laundry, clean around the house or do any type of woodwork 🙂

And I don’t know if she can operate an audio-tape player…..??? That one made me laugh out loud in the coffee shop! I don’t think Emily has ever seen a tape (cassette) player… Do they still exist? She can certainly manage a CD player, DVD player, XBOX, Play station and Wii but a tape player…. LOL!!! I have no idea!!!

Ok, so that one line item helped making that painful task a little bit less painful!

Still, I decided years ago to look at Emily for Emily and not to compare her to a chart….

Every time I have to chart her, it hurts…!

So today my happy though is………. a tape player? Really? Also, all the questions about speakings……. she got those, she can now speak!!!!

I will ignore all the “can’t” or “requires help” items….

I will move on to the pile of laundry…. maybe I should try to teach both Jon and Emily how to split the colors and remove the delicates…. or not!

It’s a challenge for both of them!

If you were to look at one of your loved ones (with or without a disability) and list all of their challenges in life, would you be able to turn-around, set them aside and concentrate on the positive or would you be focusing on all the things they can’t do?

Try to imagine having to repeat this exercise on a regular basis… could you continue to focus on what they can do, on those small things you love about them and not concentrate on the challenges and negativity….?