The One Thing I Want the World to Know About My Children With Down Syndrome


My son, August, and my daughter, Macyn, have Down syndrome. Over the years, as I’ve parented my children and stood up as their most passionate advocate, I too have learned so much about Down syndrome.

I’ve thought about what it is I want the world to know about Down syndrome. This led me to think about all the misinformation that has been disguised as truth, and how that misinformation has conjured up unnecessary and unmerited fears, and how those fears have led to the termination of countless lives, or unnecessarily stolen a parent’s joy (even if temporarily), all because of an extra chromosome.

I’ve thought about all the statistics and health issues compiled in a Down syndrome diagnosis, and how I’ve shared a lot of that with my readers and Instagram family over the years.

As I’ve sat down to write post after post in hopes of spreading awareness and answering many of my readers’ questions, I’ve decided the one thing I want you to know about Down syndrome is this:

Down syndrome is not a “problem.” It never was.

Down syndrome does not need a “cure” or a “solution” or to be fixed.

I believe every single “problem” my children with Down syndrome face begins and ends with society discriminating against people with Down syndrome.

If we do not create space for people with Down syndrome to be, I don’t know… people with Down syndrome, then I feel we will forever be trying to make them something they are not.

Over the past eight years, I have met with so many parents who have a child with Down syndrome. So. Many. Parents. And I’ve worked with so many therapists who believe in and adore my kids. So. Many. Therapists. And the thing I am recognizing more and more is the most challenging part about parenting a child with Down syndrome is not the child with Down syndrome, it is a lack of acceptance of people with Down syndrome as they are.

Dear world, my children are not “typical” children.

Dear world, my children have Down syndrome.

Dear world, please, please, please don’t try to change that.

My children are who they are, please start making room for them in your life.

Can we all just think about this for a minute? Can we all just enjoy our kids exactly as they are? Can we just take a deep, accepting breath, and rather than force our kids to fit into a world, let’s demand and expect our world to create the space needed for people with Down syndrome to easily fit into it?

Guys, your child with Down syndrome, that child in your class who has Down syndrome, your neighbor with Down syndrome, they are gifts to this world. Just. As. They. Are.

young boy holding stuffed toy in front of brick wall
Heather’s son, August.

Images via Contributor.

View the complete version of this post on Heather’s website.

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