Before Ellie's diagnosis, my interaction with kids with special needs had been limited to a professional basis - teaching special education, knowing Capernaum kids in Young Life, participating in a practicum experience for Adapted Physical Activity in college, and so on. I never realized the number of comments parents of children with special needs receive related specifically to their child's disability. I wonder if I've ever made an offhand remark to a parent, thinking I'm being positive or helpful, that I've long forgotten but the parent never forgot.
I've made it a policy to assume the best when strangers comment about Ellie. If someone is staring at Ellie, I usually guess it's because she's cute, or screaming nonstop, or chatting, or covered in avocado or other food. I tend to think that Ellie gets "looks" for the same positive and negative reasons as other children her age. I haven't gotten any negative comments about her, aside from dirty looks when she screams in inappropriate locations. Most comments are typical baby comments, and about 75 percent are about the pigtails.
Recently, however, I've been getting more comments relating to Ellie's Down syndrome. Not one of these comments has been negative, but a recent one had me thinking.
|The park had an airplane. Ellie flew it.|
Ellie and I were at the park when another mom approached me.
"I hope it's okay if I ask a personal question, but did you know she was Down syndrome when you were pregnant?"
I chose to focus on the question itself, although this particular phrase always makes me want to tell people that Ellie is a child with Down syndrome, not the end all and be all of Down syndrome itself.
"I think that's great. I was 35 when I had my daughter, and I refused amnio."
The woman who approached me was kind and personable, but the conversation made me realize that "comments from strangers" is one uniqueness of special needs parenting. I know, I know, parents of typical kids get comments too, but the "I refused amnio" comment is different.
I chose to hear intent. I believe the intent was, "I think your daughter is valuable. Her presence on this earth is good."
But part of me wanted to scream, "Of course my kid has value!"
I was content playing with my daughter at the park, and I honestly wasn't in the mood for a heavy discussion, offensive or not.
These odd conversations probably stem from the moments people want to say the right thing. When I say awkward things, it's usually from a place of good intention. People want to say something constructive, or kind, or helpful, but sometimes they miss the mark.
Personally, I wish people would just say hi to Ellie. Or mention something about her that has nothing to do with Down syndrome. I don't mind hearing personal stories about Down syndrome, about family members, etc. I like to hear about the connections, not generalizations. And while I am happy to educate about DS or share my experience, there are times that I don't feel like sharing just for the sake of sharing, because I'm with my child, letting her be a child. But, if the conversation starts with a personal connection to someone with Down syndrome, I'll stop almost anything to chat. (Edited to add: I'm talking about strangers here. If I know you, ask away!)
My opinion is just one voice, however, and I can't speak for the entire Down syndrome community.
Not being the world's leading authority on Down syndrome (or anything else for that matter) I did what I always do when I have a big, community wide question. I turned to what I call the "Down syndrome mommies club" and asked other moms what they wish people would say, and to give examples of positive interactions with strangers.
|Funhouse mirror = creepy.|
Here are their responses:
"My favorite is when they just say how cute she is or how beautiful she is. And if they are going to say something about her being sweet or friendly, I wish they would just say, 'You are so friendly or sweet.' Then, I would feel like they are complimenting her and not just making some kind of consolation comment." - Tricia
"I enjoy when men fist or knuckle bump Jake because it feels so much like what they would do for any kid." - Sue
"Good: Does he have Down syndrome? My nephew has Down syndrome. Does he do any sign language? My nephew's first sign was 'ice cream.'
Bad: Does he have Down syndrome? You are so blessed. They are so sweet and loving. (And no further explanation of how the person has come upon this knowledge.)" - Susan
"Actually, a little girl about a year or two older than Sammi came up to me at a playground a few weeks ago and said, about Samantha, 'Her face looks like another little girl I know, M., who I was friends with in preschool!' I happen to know 'M.' and know she has Down syndrome, so I thought it was pretty cool and very sweet that a) she recognized that, and b) she mentioned she was friends with 'M.'" - Becca
"I took [both kids with Down syndrome] out today for their audiology appointments- the audiologist is super sweet, and she made a comment that with the two of them we got 'double lucky'. I thought that was sweet, and did pipe in that we 'chose' Lina... since Evan was so awesome we decided to go for another." - Amy
"Now that I think people can tell he has Ds, I've only gotten extremely positive comments. Lots of 'he's so cute,' or, 'what a sweet, happy little guy!' Do I think people go out of their way to say things sometimes because he has Down syndrome? Yep, I do. But if people want to go out of their way to be nice my little guy, I'm cool with that." - Leigh Ann
"She gushed about how lucky I was, that she always wanted a child with DS. She and her husband have been talking about adopting their next child and she's trying to convince him to adopt a child with DS. Etc. She was so enthusiastic and excited and more than a little bit jealous, genuinely so. It felt good to meet someone who saw my son as the treasure he is." - Heather
"I admit, I enjoy the attention Ty gets in public (whether they say anything about Ds or not), because I know it makes Ty feel special! I'd rather any well-intentioned comment than none at all, to be honest!" - Kerry
Just some food for thought.
Have a great weekend!