Shouting Their Worth: World Down Syndrome Day

Before Xander

Recently, a former student sent me a paper from years ago in which she interviewed me about my view of disability. I vaguely recalled the interview and knew I was not going to like my answers. At that point in my life, I was engaged, I had just started my career, and I felt like I could take the world for all it was worth. I didn’t really know anyone with any kind of disability. Back then, individuals with disabilities were a novelty to me. 

I knew the person I am now – the mom who loves her son with Down Syndrome – was going to be ashamed of the way that I perceived disability. In the paper, I said the things I valued most about myself were my intellect and social capabilities and how those are the things that I would never want to give up. I talked about how my quality of life would be significantly diminished without these things.

Those words sit heavy on my heart.

Xander’s arrival and diagnosis

Thanksgiving Day 2016, after five months of marriage, we found out we were pregnant! We did all the normal testing and were starting to get excited. I didn’t think anything of the testing that was done because I hadn’t experienced a huge disappointment or sadness at that point in my life. The testing came back high risk for Down syndrome. We talked a lot about it, and spent a lot of time reasoning that “high risk” actually isn’t really that high. It was only 1 in 220. Sharing the test results with family and friends was hard and many affirmed our thoughts: it really wasn’t that high.

In the first moments after Xander made his arrival (two weeks early!), I had forgotten about our “high risk” test results. When I remembered and noticed his low muscle tone, slightly almond shaped eyes, or his difficulty eating, I pushed the thoughts away and hoped that despite what I saw in front of me he didn’t have Down syndrome. Seven long days later, the doctor called with confirmation that Xander has Down syndrome. 

A Good and Perfect Gift. 

Self-pity colored those first days. My thought-life was dominated by endless doctors and therapy appointments, the low likelihood of Xander living totally independently and anxiety about the kids who will make fun of him at school. Amy Julia Becker’s story in A Good and Perfect Gift, opened my eyes to the possibilities Xander, and the ways that he would (and will!) change me and our family. After reading a lot and connecting with other moms, now, most days when I look at Xander, I see his potential, I see his sense of humor, I see how much he looks like me, I see determination, I see indiscriminate love for people. And then other days are just a mixed bag.

Thanks to people like Heather Avis and her tribe of moms of kids with Down syndrome, many families aren’t meeting a Down syndrome diagnosis with fear. Instead, we are filled with hope and possibility. Nationally there is a movement of connection for families of kids with Down syndrome, and here in the Seacoast we are connecting too! Check out the NH Down Syndrome Association and The Lucky Few. I am beyond grateful to the mamas who go before me in this journey.

Let’s shift the narrative by shouting their worth.

Friends often ask me how I want them to talk with their kids about Xander, here are my four tips: 

1. Let them talk about it. Please don’t shush your child, that makes it more awkward! Ask them to explain what they notice, and address that.
2. Help them overcome the barriers they are perceiving. I want Xander to be friends with your kids, this starts with you accepting him, then teaching your kids to.  
3. Ask me! If you’re not sure how to explain my kiddo’s differences, you could ask me to help explain.
4. Don’t point out differences. Kids are way more accepting than we are, let’s let them be that way. 

I am passionate about making the world a better place for families and children who experience disability. Most people don’t have a significant relationship with someone who has a developmental disability. But that doesn’t mean you can’t start one! Your proximity is the most valuable thing that can change your comfort level in interacting with children and families affected by disability.