Friday, May 18, 2012

What We Wish You'd Say.

When our CVS results came back positive for Down syndrome, I found myself in a new parenting world.  Since I was only 11 weeks pregnant, I hadn't really spent much time in the "typical" parenting world, but that's where I always assumed I'd land.

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

"I would feel great hearing 'Your son is adorable! He has Down Syndrome right. He's perfect! Could I borrow him!' This would let me know a few things: 1) That you think my son is adorable( any mom loves to hear that), 2) That you know that he has Down Syndrome , 3) That him having Down Syndrome doesnt make him any less perfect than a 'typical' child 4) That you're so sincere that you want him for yourself!!" - Asha

Just some food for thought.

Have a great weekend!
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  1. Love Babycenter. :-) Great food for thought! And about that comment that you got, there are a few ways to take that - that she'd hope you'd think she was extra special for "opting out" of testing and that would make her feel good, or that she sees the lives of our little ones as worthy. I hope it was the latter...

    1. I really do think it was the latter, and that she didn't even consider that a) her comment could have been taken poorly or b) that I might not want to discuss prenatal testing while I was busy playing with Ellie at the park. But her INTENT was so clearly good, and I realized that this kind of thing happens to me all the time!

  2. Haha, love it. It's so hard because you know some people are just trying so hard to say the right thing and then totally miss.

  3. Great recommendations! I love the comment about wishing strangers would tell the child that they are friendly or sweet, rather than the generalization. I experienced frustration with this today, when someone who hasn't seen me since pre-Cora said that she will be a good sweet girl who loves her mama forever. The truth is, I hope this is the case. I don't want her to be a rascal just to break a stereotype. She is good and sweet. But she's kind of rascally too. And it's annoying nonetheless, coming from someone who's never even met her in person.

  4. i think you got it right - people who make comments, however awkward (as long as they're not completely and directly rude) probably have good intentions. I'm horrible at coming up with things to say sometimes and rather than just keeping my mouth shut, end up saying something weird. Uh-oh!

    I try to give them the benefit of the doubt and maybe rephrase it for them. For example, "well, he's not ALWAYS happy - he has his moods, just like his siblings." Other times, you just gotta smile and nod... great post!

  5. Funny you mention the 'with Down syndrome' comment in the beginning, as I always feel like correcting people when I hear that... but most of the time bite my tongue and try to focus on the 'bigger picture' of what they're trying to say ;)

    With an 8 week old, I haven't had to deal with the DS commentary as yet. Most people just see a newborn and comment on how beautiful he is. If they do notice the DS, no one has said anything yet, but I imagine it's in my future. Honestly, it scares me a little and I'm hoping I don't have to develop too much of a thick skin! Hopefully I get to hear all the lovely things the Babycenter mums spoke of :) Thanks Megan x

  6. It's such a funny thing to think about, because I am 100 percent sure that I have made thoughtless but well-meaning comments MANY times in my life. I am a talker, and I stick my foot in my mouth on a regular basis. I try to give people the benefit of the doubt - they mean well ...

    I haven't gotten any comments from strangers yet, but I hear "Did you know when you were pregnant?" and "he must have a mild case" the most from acquaintances.

  7. I grew up in a home with my mom's 3 handicapped siblings--2 are blind and 1 is mentally retarded. This was in the "Life Goes On" era, and although so many people had good intentions, so often the conversations were hurtful or left me angry, even at a very young age. You are an amazing mom--your honesty is admirable.

  8. I always try to take comments, especially from strangers, nicest way possible. I think people want to connect and ask questions, but just don't know how to.

  9. Thank you for sharing your wonderful thoughts. I agree that most of the time people are just trying to be kind and helpful with what they say - that's why most times I don't take offense.


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