Happy Canadian Down Syndrome Awareness Week! #SeeTheAbility

This week was a bit of a big deal in our world. You see, today marks the last day of Canadian Down Syndrome Awareness Week! Each year, from November 1^st to 7^th we help educate our friends and family about Down syndrome and celebrate the accomplishments and lives of individuals with Down syndrome. This year, Ella and I were privileged to be able to do a presentation for her class. It was particularly significant this year because Ella was able to share her new book with her friends, some of who played a big role in helping promote the project and raise money for the publication process. You can watch the promotional video here.

How This is Ella came to be

Like most parents, I was very nervous about my daughter’s transition into kindergarten. I wasn’t worried, however, about Ella’s reaction to her new environment. Ella is extremely charismatic, fun-loving and very friendly. I was confident that she would settle in with no problem – she loved school, she loved being with her friends and she loved learning. I knew all of this from her preschool experience. No, I was worried about the reaction of the administration, the teachers and the other students. You see, the idea of “disability” is a social construct. It is a stigma that we have placed on people of historical difference or deviation from what we, as society, consider normal. Often times that deviation or difference or the unknown in general, can be scary or, to a lesser degree, it can spark curiosity, especially when a child has not grown up with diversity – cultural, neurological or socio-economical. Even our son, who was with Ella from the day she was born would sometimes ask questions such as, “when do you think Ella will speak properly?” or “Ella resembles Bea” (another little friend of ours who has Trisomy 21). We knew that going into school, he would not be the only child to take note of Ella’s differences. That being said, we also knew then and continue to believe that Ella is more the same than different. She wants to be accepted and included just like any child and just because she has trouble saying some words, it doesn’t mean that she can’t be a good friend.

To help her peers understand this, I wrote a book entitled, This is Ella. It pointed out some of the things that make Ella different but mostly things about Ella that the children could relate to such as riding a bike, or counting to ten or being silly. The book was a big hit! The children loved it and the teacher loved it.

This is Ella teaches readers that diversity is a beautiful aspect of the world that we live in. Some of us have blue eyes and some of us have brown eyes. Some of us have to practice sitting still while some of us have to practice playing the piano. Some children are good at reading, while others are better at math, or art or playing soccer. We all have different strengths. Each one of us represents a different colour in a beautiful collage and we all have something unique and meaningful to contribute to our communities because community is as much about giving as it is about receiving.

Over the years, many parents of children with Down syndrome who were approaching the school years asked our Down syndrome community about how to educate teachers, parents and classmates about their child’s diagnosis. This is Ella was often referred to and I have had the privilege of sharing it many times over. For this reason, I decided it was finally time to make the book accessible for all. I am more than thrilled to be able to share Ella, and her vivacious spirit, with the world. You can purchase the book here.

OR come purchase a copy in person on November 26^th at the Strathcona Chapters. Ella and I will be there doing story time at 12:15pm and signing books afterwards.

So What is Down syndrome?

Down syndrome, also known as Trisomy 21, is a genetic variation, which results in individuals having an extra copy of the twenty-first chromosome for a total of 47 chromosomes, instead of the typical 46. This can be diagnosed through a simple blood test. Essentially, having Trisomy 21 means there is extra of the genetic material contained in that chromosome. Think about it this way: do you like smoothies? I like to make mine with banana, yogurt, orange juice, and maybe some strawberries. Yummm! Now, what would happen if you added double the amount of strawberries? Your smoothie is going to look redder and taste a little bit different.

In people with Down syndrome, the “extra” manifests itself in different ways. Often these individuals tend to have a flattened nose bridge, almond-shaped eyes that are upward-slanting, low muscle tone, and small hands and feet. Sometimes, their hearts have trouble working on their own or they might have trouble eating. It also often results in developmental delays in speech, cognition, learning, and/or physical development.

Fifty years ago, people with Down syndrome would not have been expected to live very long and would be separated from the rest of society. Most people thought that they couldn’t help them, but that was not true. Today, once we know that a baby has Down syndrome, we can start helping him or her right away. It makes a big difference. People check their hearts to make sure they are working properly; if not, they get them fixed right away. Other people help them learn how to speak, eat, walk, and do any of the other things that they have trouble learning on their own.

Every day we are learning more and more about Down syndrome. We now know that individuals who are born with Down syndrome can do most of the things that people without the extra chromosome can do. They can play, dance, and learn. They can have jobs, live on their own, and contribute to communities in very meaningful ways…just like you.

And what did the presentation look like?

Many parents often comment that they would like to do a presentation for their kids’ class or school but are unsure as to what to do. There are lots of options but just to give you an idea, this is what I did.

I started out by reading This is Ella. This went fabulously! And just as I had imagined as I was writing it, kids were eager to answer the questions posed in the book and interacted well with the material. Then I talked a little bit about Down syndrome. Ella is in grade three now so I showed a video (it would be too long for younger grades). This video  is one of my favourites for not only explaining Down syndrome but giving context to it and helping kids understand how to navigate inclusion.

I then asked some review questions:

• How many chromosomes do most people have?
• How many do people with Down syndrome have?
• Is there a cure for Down syndrome?
• What is the R-word?
• What was an activity that Sam liked to do?
• What was an activity that Alyssa liked to do?

Then I said, “So as you saw from Ella’s book, as you know from Ella in real life, and as you saw from the video kids with Down syndrome like to do, perhaps some of the same things you like to do. I want you to close your eyes and picture three things you like to do with your family and friends.”

This led into the inclusion activity that is laid out in the lesson plan that accompanies the book. As the kids worked on their drawings, Ella and I answered questions and they had some great questions. For example, one child asked why Ella can say some words clearly but not others.

At the end, Ella selected two friends to help her hand out gifts for her classmates: #Seetheability bracelets and tattoos from the CDSS.
And I was sure to explain what #SeeTheAbility means.

Here is what the teacher had to say,