awareness, Down syndrome, inclusion, Ivy Joy, the lucky few, tribe

Have the Conversation…

A couple months ago, something happened when I took my kids to the park. It was an experience that I have lived from another side. Experiencing it from this side, from the side of a special needs mama, it broke me. When I posted about it on social media, I learned that I was not the only mom who has lived this from both sides. Here was the post:

“Dear mama at the park:
This afternoon I watched your little boy point and ask you about Ivy. I couldn’t hear what he was wondering… maybe about her feeding tube, or why she looks a little bit different from typical babies. I watched your face color and your furtive look in my direction as you shushed him and took him to the slide. Here’s the thing. I used to be you. The mom who frantically told her children not to stare. The mom who practically ran the other way if my kids mentioned somebody’s differences. I truly believe your actions were not malicious or designed to hurt anybody. Mine never were. But oh how I wish that somebody had gently told me then what I know now. When you shush your child or steer them away from mine, you make my child seem scary. You make differences and disabilities negative. Something to be shied away from. I know that is not your intent, but you are teaching your child to avoid mine and other children like her. I know that your child’s questions embarrass you, but I promise I know he is only five. I know that he is curious and trying to make sense of something he’s never been exposed to before. I won’t be offended. In fact, I would love nothing more to answer his questions. To teach him that he uses his mouth to eat food while Ivy uses a tube to put food right into her tummy. To tell him that she has Down syndrome which just means that she has an extra chromosome – an extra part to her that we don’t have and makes her special. To show him that she is so much like him. She smiles when she sees people, loves music, and cries when she’s hurt. Next time, I hope you’ll give me that chance. Conversations like these are so important. They make our world more inclusive and make space for all of us.”

What hurts me the most is knowing that I have inadvertently made other special needs parents and other people with differences feel the same way. And even though it was because I didn’t know any better, it doesn’t make it okay. Truly, these are the conversations we need to start having out in the open. Different is not bad. Pointing out how somebody is different from us is not bad. As long as it doesn’t stop there. Every single human on this earth is different. Some differences are big and some are small. Some are hidden and some are very obvious. Children notice differences and how we react to them. Are we uncomfortable and nervous? Do we go out of our way to avoid people with differences? Or are we open, accepting, and inclusive?

I think the same thing is true about race. We can’t pretend that we are colorblind. We HAVE TO teach our children about race, and know that it is okay to notice that people have different colored skin than them. I know I am a white woman of privilege, but I imagine that pretending you don’t see disability and ignoring what that means for a person is similar to acting ‘colorblind’. We can’t pretend we don’t see it. We can’t pretend that racism doesn’t exist. Or that we aren’t a product of generations of racism and racist systems. We can open the lines of communication to confront and address these issues.

I don’t have all the answers. I do know that it starts by leaning in and having conversations about these topics. It starts with teaching our children that inclusion means that everybody has a seat at the table, not that everybody is the same. As a teacher, a parent of both typical children and a child with Down syndrome, and a human being, I want to be part of the solution. I’m not sure exactly how, but I am becoming more and more passionate about this issue.

What do you think? How can we engage in these conversations with our children and society as a whole to educate and bring awareness? I’d love to hear your thoughts, because I think this is SO important!

If you are interested in being more aware and involved in this issue, one way to educate yourself is by reading Heather Avis’ new book called “Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs”. It comes out in a week and I can’t wait to get her perspective. She is the mother of three beautiful adopted children, two of whom just happen to have Down syndrome and one who happens to be black. She has so much experience trying to create spaces for her children and I believe her wisdom is going to pave the way for inclusion in so many places. You can pre-order (or order if you’re reading this after June 25th) on Amazon at this link: https://www.amazon.com/Scoot-Over-Make-Some-Room-ebook/dp/B07KDZJZDD

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