I have a kid with Down syndrome. So what? Everyone who is in my life knows that by now, and by being around us they know what that really means. Which, frankly, isn't a whole lot. It means he's doing things more slowly, can't communicate as well as other kids his age, yada yada. This post isn't about that.
When I'm in adult social situations, around people I've never met before, having a kid with Down syndrome becomes more complicated. It's complicated because most people know nothing about Down syndrome and what they think they know is usually extremely outdated or just plain, wrong. So, I usually don't mention my youngest son's diagnosis when I'm out and about in these new people situations. Let me be clear, I am NOT embarrassed about it. I just can't stand the feeling of all of the air being sucked out of the room with a giant "Whoosh" when it does get mentioned. Then, I have to quickly assure them that I wasn't given a prison sentence with my child and that there are many things about it that are positive (being faced with my own ego, taking life a little slower, celebrating the milestones more, gaining perspective, etc.) But, it's really annoying to have to do this and most of the time I just want to have a cocktail and enjoy the adult conversation.
I was recently out with a group of Moms for a Girls Night Out at a restaurant. These Moms and I all have one thing in common: We all have a child with Down syndrome. The waiter was coming back and forth bringing us things and engaging in flirty, clever quips with us. Once we all arrived, he asked if we were celebrating something special. A few responded that No, we were just out to get away from the kids. Then one friend says, "Well, actually"... and I tensed up. Here it comes. "We all have a child with Down syndrome!" Whoosh!! And there goes the air. He covered well, but he didn't respond with the same jovial nature he had responded on all previous exchanges.
There are times when I'm out in a new social situation where the conversation is long enough, relevant enough or deep enough that it warrants me sharing a little more about my life. But, I always hate that first moment- the moment before they realize that it's all good. I was at a friend's birthday party, and was having a fun and fascinating conversation, wine glass in hand, with a group of people- a mix of a couple friends and a couple of people new to me. The conversation turned to kids and parenting. The way the conversation was going, I was either going to have to change the subject or mention my son's diagnosis, so I said something along the lines of, "My youngest son is 3 and just started walking. He has Down syndrome, so it has taken him a little longer to "get there". The guy I was talking to, immediately lost his smile and shifted to his serious face. One of my friends quickly saved the moment by saying, "Jen has a great blog where she writes about her experiences with her kids." Up walks a woman I don't know, who hears the tail end of this statement, and she practically shouts, "You're a MOMMY BLOGGER??!!"
Me: Umm...yeah, I guess so.
Her: I LOVE MOMMY BLOGS!!
My friend: (introducing us) So-and-so this is Jen
Her: OMG!! You're Jen?? Of "Jen's List"????!!!!
Me. No!! Oh God NO. I mean...I've gotta hand it to Jen of Jen's list, but that is definitely not me. No, I just write about....my kids.
I decide that there is no way I'm bringing up the meat of what I write about in my blog. Based on how loud and how enthusiastic she was, I didn't see THAT conversation going in any direction that would have been good for me.
Sometimes I wonder if I like the mystery. Like I've got a good "secret" to share- something that's just a little bit different from everyone else. Almost everyone has a story. And like every good story, it takes time to unfold. I have friends who tragically lost their spouses, friends whose parents were taken from them at a young age, and even recently learned that a friend ended up in a cult called the Folkolare because she didn't have enough extra curricular activities. These are things you just don't blurt out upon first meeting someone. Because if you do, you will be met with the Whoosh of air leaving the room. And those of us who have "stories"? We don't really want to have to do damage control over the perception of our lives.
So, what should you start off with in a conversation with someone new? I think I'll try opening with this one, "One time, I accidentally asked a woman if she was drag queen."
Now, "the Whoosh" that accompanies that is a fun one to explain away...
7 comments:
I held my breath reading this. Yep, I totally get what you're saying. When Sammi was a baby, I felt the need to bring up her diagnosis at any given moment. I guess it was because *I* needed to talk about it. And it sure did make for some odd moments. And now, in all honesty, I don't even think about it when I'm talking to people outside the *fold.* I don't bring it up because it's not relevant. I was "interviewed" by my company's training class the other day (it was part of a project where the new employees had to go and find out 3 interesting facts about as many people as they could, so they could get to know others in the company). The first fact I mentioned about myself was that I was a blogger. And each time, I was invariably asked what I blog about. I said, "disability, education, parenting, with a healthy dose of *whatever* thrown in." Specifics weren't relevant at the time. And not like I feel that it's something to *keep* from mentioning, I just don't feel the need for that *whoosh* either. LOL - that's a great way to describe it...*whoosh*... :-)
Loved you backpedaling from the Jen's list thing...hahaha
Oh my, yes! I have so experienced the "whoosh" and I, too, am tired of it. Thankfully (?), the fact that I have 8 kids usually supersedes any awkwardness about Down syndrome. ;) I generally don't bring THAT little tidbit of information up, either.
I love your line: "We don't really want to have to do damage control over the perception of our lives." I will certainly have to borrow this one, credits to my niece. Great perspective, Jennie. Thank you
even recently learned that a friend ended up in a cult called the Folkolare because she didn't have enough extra curricular activities
I think you should tell strangers THAT story. Sounds a bit out there....
I'd say that your blog is a bit unique, they should check it out.
But I'd have a hard time omitting that info about the driving angst of why you blog. But I KNOW WHAT YOU MEAN
A behavioral therapist from club 21 recommended just leaving the conversation open with statement and then asking do you have any questions? (Directed at the strangers staring at the park).
I have a hard time not jumping onto a soap box trying to leave a tidbit for someone who might get asked someday. Like posting www.downsyndromepregnancy.org everywhere--a solid place for someone to go for more info.
But I get long long winded
And never go out
But new schools & parents this fall soooooo it's starting again. People I will see in the school community for the next 20 years at district fundraisers etc though might as well get a mini lecture.
Even if I have to hear the "well I worked in spec ed & keep your son with HIS OWN kind" And "my friends child is in gen ed & its not working" then I say yes it's not an easy path and strategize how to convert them to inclusion kool aid drinkers like me over the next year...
Start & create inclusion mini series of lectures and showing by example.
And at school for you? You RAN THE CARNIVAL. You get ANY THING YOU WANT
Including preschool NOW.
I'm sooooo not kidding. That is LA. You do the work you get what you want, especially if you have a fame connection or two for hot auction items too.
Tara lol! "Thankfully ? "
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