Our family started celebrating World Down syndrome (WDS) day six years ago after our second daughter Emalee was born rockin’ that “little extra chromosome”. To say we were surprised would be an understatement. Even after the initial shock wore off, I went through a long period where I mourned the loss of the child that I thought I was going to have, and the life I had imagined as a family of four. All of my visions and plans as a mother came to a screeching halt. Will we be able to raise our daughter in a bilingual household like I had intended? What about school? Will she have friends? What about her older sister Maya? How will this all effect her?!
Spoiler alert, everything turned out fine. Better than fine in fact. Maya at the age of 9 is turning into the most empathetic but fierce advocate for her sister. Emalee is the life of any party, she’s making wonderful friendships, and despite my initial worries, speaks both English and Japanese. Yes, the first year of our Down syndrome journey felt like complete chaos, and today, I still feel like I’m in survival mode most days, but isn’t that life? (Especially mom life?)
Now that we’re six years into our unexpected journey, I can confidently say that we can’t imagine, nor would we want our life any other way.
Down syndrome is SO much more than what doctors and textbook definitions will tell you. Our daughter, with her extra chromosome, has gifted us with a new appreciation for life, a new definition of happiness, and a community of lifelong friends, to name a few.
My hope and motivation for spreading awareness about Down syndrome is to show the world that this diagnosis is not something to fear or shy away from. It should be embraced and celebrated because there is so much joy, beauty, confidence, and determination that comes along with it -- qualities that everyone can learn from.
As a mother of a child with a disability, it’s my privilege as well as my duty to advocate for a society that celebrates diversity and inclusion. I strongly believe that the best way to achieve such a society is to have open discussions and teach our children about these concepts from an early age, and I’d love to introduce some ways that you can incorporate them as well.
1) It’s okay to ask questions!
It’s a pretty common occurrence when a child notices someone with a visible difference, tries to point it out or ask a question about it, and the parents, whether embarrassed or unsure of what to say (often both!), dismiss the behaviour as "rude" and quickly flee the scene. Even though the intention is almost always good, avoiding these opportunities for engagement actually runs the risk of teaching kids that people who are different should be avoided. Instead, try initiating a conversation between that person and your child. It’s been my experience that most disabled people are receptive to interactions that come from genuine curiosity, and kids have an innate desire to ask questions and learn! Having open discussions about different abilities and normalizing disability helps towards creating a more inclusive society, which benefits everyone!
2) Practice kindness & empathy.
I think that one of the most important things that we can teach our kids is how to be kind and empathetic and this comes with practice. From helping them to describe or label their own emotions from a young age, to celebrating the things that make us similar or unique, there are many opportunities to incorporate compassion and appreciation of differences into our daily life. I find that books and toys are a great way to initiate these conversations. There are so many great books (ex. 47 Strings & Different - A Great Thing To Be!) and many companies are now creating beautiful dolls with disabilities (our girls love their Miniland Dolls with Down syndrome). One other important thing to remember; be kind to yourself too! Don’t forget to treat yourself with the same care and kindness that you would your loved ones. No one is perfect and it’s ok to make mistakes and learn from them.
3) Stand up for real inclusion.
Inclusion; we read about it, hear about it and talk about it, but what does it really mean? Inclusion isn’t tolerance, a favour to someone else, or a program, and it isn’t just about physical proximity. Merely sharing the same space with a disabled person or trying to incorporate people into something that already exists isn’t really inclusion either. True inclusion happens when things are created with every person in mind; where everyone’s presence is valued, and all opinions are given equal consideration. If you don’t see inclusion happening around you, or if you’re unsure, speak up, ask questions, make suggestions, and initiate change!
We’d love for you to join us in celebrating the Down syndrome community on March 21st. You can do so by wearing fun, funky, mismatched socks to celebrate uniqueness and individuality, and by telling others about Down syndrome (or just share this post)!
But the truth is, advocacy work is an ongoing effort. Something as simple as purchasing diverse books and toys, to treating others the way we want to be treated ourselves, can make someone feel seen and accepted. It doesn’t have to be a grand gesture, even one small act of kindness can help to elevate someone’s entire mood - kindness is truly magic!
In the wise words of Maya Angelou, “People will forget what you said. People will forget what you did. But people will never forget how you made them feel.” So let’s be kind; it’s a gift that everyone can afford to give, and that everyone deserves to receive.Nao lives with her family in Toronto, Canada and is a proud mama of two girls, Maya and Emalee.
Emalee surprised everyone in 2015 when she was born with an extra chromosome, but has since been exceeding expectations, breaking stereotypes, and changing perceptions with a lot of smiles and sass.
Nao continues to advocate and work hard toward disproving society’s (and her own) presumptions and stereotypes about people with disabilities, not comparing Emalee to other children, and continuing to remind the world that each child has their own unique strengths and abilities.
You can follow Emalee and her daily cheer and sass on Instagram: @rightnao.
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