A few months ago I found myself in line at the grocery store in front of a mom and her 16 year-old son with Down syndrome.
Since having both my kids, I have done a lot of reading on parenting. Lots of people seem to have opinions on what’s acceptable behavior and what’s not. Among the disabled community, there is a lot of talk about people who stare at our children. These writers often suggest meaningful ways to turn curiosity into a teaching moment, something that will make everyone feel good at the end of the experience.
I used to pride myself on not being a “starer.” You know who I am talking about- the people in the grocery store who cannot help themselves but to openly gawk at someone who is different, sometimes even making a rude comment to emphasize their shock/awe/disgust.
Most days, I am still the polite person my mother raised me to be and my common sense keeps in line. However, since having Elisa, I have caught myself staring when I have unexpectedly seen someone with Down syndrome.
This was the case with the young man and mom in line behind me. I knew I was staring. I was intently listening to him speak and watching his actions. Finally, I said to his mother, “Does he have Down syndrome? My daughter was born and diagnosed last year. It’s always good to see older children doing so well.”
Elisa’s diagnosis was a complete surprise. We had no idea she had Down syndrome until she was born. Things became very tense in the delivery room as the nurses called in the neonatal team for her evaluation. Minutes after we were told they suspected Down syndrome, we discovered she had a severe heart defect and she was sent off to the NICU. We didn’t have much time to process or research the diagnosis. We weren’t connected to other parents or anyone in the DS community to tell us we would be fine. We were scared. Some days, we still are. These first 20 months have been hard and we have no idea what we will encounter ahead.
That being said, when I am out and see people with Down syndrome in our community, I openly stare. It’s embarrassing. It’s happened at church, the Y, the Ronald McDonald House we stayed at during Elisa’s open heart surgery. My husband is mortified by me. Sometimes, I am staring because I am trying to determine IF they have Down syndrome. Most days, I stare because I want to see how they are doing, like I am looking in a crystal ball to see what Elisa’s future might look like. I am not proud of this and do try to not make people feel uncomfortable. It’s just that we are still in the beginning of our journey and any opportunity to see what might be ahead for us, I seize it. Most times, I introduce myself to the person I am staring at and tell them why I seem to have no manners. I speak with their parents and caregivers and ask for tips. And I apologize over and over for staring. But I just can’t help it.
A&E recently aired the show Born This Way, a series following the lives of seven young adults with Down syndrome. Overall, I think it was a great show and really helped people relate to individuals with Down syndrome. I watched it voraciously. I kept the episodes on my DVR so I could see them multiple times. Don’t get me wrong- I was interested in the story line and loved discussing the characters at length with Elisa’s godmother- but I wasn’t watching it for the drama. I was watching it as a case study. What did these parents do to help their children get to a place where they could hold jobs and have romantic relationships and a group of friends? At one point, I thought about trying to reach out to one of the star’s parents to find out what speech therapy techniques they used because their child’s diction was so clear.
I know, I sound like a crazy person.
I just want what is best for my daughter and am willing to learn from anyone who is willing to teach me how to maximize her potential. And the Down syndrome community is the only guidebook I have to navigate this journey. So, please, bear with me if I’m awkwardly staring at you- I am not judging you or your beautiful child but trying to learn from your example.
Down syndrome is hard, harder than any challenge God has put into my lap thus far. I am blessed to be a part of the Down syndrome community and recognize that it will be my responsibility to help the new moms that come after me. I can only hope when that time comes I can be lucky enough to find one of them staring at me, looking for answers. Until then, I am sure I will keep embarrassing myself while making new friends and finding new mentors.