October is Down syndrome awareness month.
If You’re Going to Read a Post About Down Syndrome, Read This One
My son and my daughter have Down syndrome and every year, for the past seven years I have used this month to share Down syndrome with others. 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.
This month I thought about what it is I want the world to know about Down syndrome. This lead me to think about all the lies that have been disguised as truths and how those lies have 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 character traits and health issues complied 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 your 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.
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 we will forever be trying to make them something they are not. Like good ol’ Einstein once said, “But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”
As soon as our babies are given a Down syndrome diagnosis we are inundated with one million ways to make our kids...fish who climb trees!
These services, often called “Early Intervention” have only been around since the 70’s. Since the 70’s people! It’s only been within the last 50 years that society can begin to see any kind of worth for people with Down syndrome…but really, just barely. In the beginning, this Early Intervention has helped to keep people with Down syndrome out of institutions by offering new parents hope that their child will in fact do, A-Z. And friends, who our kids with Down syndrome are today is a freaking miracle, largely thanks to things such are Early Intervention.
And I’m so thankful. I really am. So often people will comment about how we’ve come so far with Down syndrome. And while I agree, I see the pendulum swinging in a direction I believe is continuing to strip people with Down syndrome of their worth.
Over the past eight years I have met with so many parents who have a child with Down syndrome. So. Many. Parents. And I’veworked 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 difficult thing about having a child with Down syndrome is not the child with Down syndrome, it is this never ending pressure to make people with Down syndrome more like people without it. And I fear this is the unspoken goal of all the interventions and therapies offered to our kids.
And you know what, it took me eight years to recognize, it is not my goal!
Dear world, my children are not typical children.
Dear world, my children have Down syndrome.
Dear world, please, please, please stop trying to change that.
This month, as we set aside 31 days to spread the word about all things Down syndrome there is one thing I want to say, one thing stirring up in the deepest parts of me:
My children are who they are, please stop trying to change it and start making room for it in your life.
If our goal for Early Intervention and all the therapies that follow is to help our child be the best dang fish they can be, then swim on good friends. But when to goal for all the early intervention and therapies and supplements and vitamins is to make a fish more like a bird, friends, we are missing it!
Can we all just think about this for a minute? Can we all just enjoy our kids exactly as they are before we start therapizing and servicing away the very thing that makes them them? 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?
I am so sick and tired of making my daughter and son do things that she/he hates to do and that are too difficult for her/him, all in the name of “normalizing” them…ugh!
The other day I was sitting across the table from my daughter, working on one of the hundreds of things that are difficult for her, and we both wanted to rip our hair out. The thing is though, my daughter is a freaking gem. She is kind and funny and easy to be around. She is so brave and so smart. As I sat there, both of us frustrated and discouraged I thought, “Why am I making her do this anyway? So she can be more like other kids and less like Down syndrome?”
It’s crazy guys! Without a doubt, one of Macyn’s greatest attributes is her extra chromosome (August’s too, of course!).
And we are missing it!
And It is not her fault that we are missing it.
Yes! Go to speech therapy and do TalkTools and get your toddlers feet fitted for braces and spend the hours in physical therapy and always, always, ALWAYS, maintain huge expectation for your child with Down syndrome. Friends, do all the things!
But please, please, please let them have Down syndrome.