October is Down Syndrome Awareness Month, and what I would normally write are bullet point facts about Down syndrome explaining the parts of that 47th chromosome and what it means for my daughter to have it. I would probably write about why I feel it is so important to advocate for Tessa and others so glamorously sporting an extra chromosome. I would intensely push for people to stop using the word “retard.” And in mercy I would normally plea for acceptance and respect for my daughter, ultimately giving people two options: either be nice or don’t be.
And you know what? That is crap. Let me tell you why…
(This is one of the posts where clicking publish took a while…)
For three years I based my advocacy efforts on accepting and respecting my child with special needs. I threw her into the hands of the world as a child with Down syndrome before I ever gave anyone a chance to know her as a child, even though my message was always rooted on treating her equally–driving home the point that everyone should accept her and accept her Down syndrome. After all, wasn’t that the right thing to do?
What I unknowingly did was join in the hierarchy of the human race, where people with special needs don’t necessarily have the highest rank. I was rooting for the underdog with Tessa in the forefront, but only speaking to a small population of people that is greatly out numbered by a larger population people who would always accept Tessa–Down syndrome or not.
What was my goal? What did I want from everyone? I was focusing on one part of her that I wanted that small population and everyone else to overlook…Down syndrome. Like I had created so some of invisible five-step list (expectation, rather) for each person that would encounter Tessa:
- Meet Tessa
- Learn that she has Down syndrome
- Act like you didn’t learn she has Down syndrome
- Get on over all of that
- Be her friend
In a way I don’t totally disagree with my steps here, friends. However I don’t see myself with such automatic expectations for my youngest Kendal, now do I? I expect Kendal to be treated with respect and to be treated kindly, despite the fact that she is a total control freak. I do not expect anyone to accept Kendal for any one specific reason. That is where the problem lays. I was begging people to accept Down syndrome, as though I was saying “Love Tessa. Love her even though she has Down syndrome” without saying it at all, blindly robbing her of the chance to be seen as a person. Therefore, was I any better than the people I was trying so hard to make an impact on?
Accepting Down syndrome. That is what it was all about. I wrote of it numerous times. And if it would not be accepted, I would write about the unfairness of that. It is easy to get caught up in wanting everyone to see your child as a child, despite having a disability, because a part of our society says that that is how they should be seen. Getting caught up meant focusing specifically on everyone accepting her disability.
My goals for her are unfolding as I find our place in the Down syndrome community (where I am often very misunderstood), and more importantly in the world of motherhood. Have I not been honoring what I originally set out for–for people to like her for her? Don’t we want that for all of our children and loved ones, regardless of lingering circumstances?
So here is what I will say for this Down Syndrome Awareness Month: Don’t accept my daughter’s Down syndrome.
Be aware that Down syndrome exists (and more than just the 31 days of October). Learn about it. Ask about it.
We do not need to accept Down syndrome. We need to accept each other. Accept her for her. Respect her as a human being. Trust her. Listen to her. Befriend her. Understand her. Defend her. Love her if you want. Invite her to birthday parties and sleep overs. Tell her when she is wrong. Be honest with her. (You know, all of the things our parents wanted for us when we were little…) Just don’t do any of it because she has Down syndrome.
In honor of Down Syndrome Awareness Month–all October long, we are selling 47 Strings: Tessa’s Special Code for just $12!
Head on over to Little Creek Press and grab your copy!