The Melting Pot

There was an interesting exchange on Facebook today.  It began with a review of Kelle Hampton’s soon-to-be-released book, Bloom (not an extremely favorable review – and how did she get an advance copy, anyway?!), and segued somewhat into the topic of this whole “Down Syndrome Parenting Community.”

I dunno . . . I think the concept of all of us parents who have kids with Ds being a “community” is a bit of a myth, or at least a stretch.  I think there’s this notion that because we have that in common, it creates this automatic bond between us all.  I think at some point, I even believed it.  For a while, I was even part of this super secret group of a handful or two of Ds moms.  At first it was really cool – even though several of us didn’t know one another at all before the formation of the super secret group, we did sort of instantly bond – or thought we did, anyway.  But as time went on, skirmishes arose and things got ugly and it didn’t work out (well, actually, for all I know, they’re all still going strong, but I parted company many moons ago).  Because the fact of the matter is, (a) groups of women notoriously don’t get along for the long-term (that’s my theory, or observation, anyway – women are emotional and competitive and catty – not that I don’t think women are awesome!  Heck, I am one!), and (b) a group of parents of children with Down syndrome is as varied and diverse as any other group of parents.

Yes, having a child with Down syndrome gives us some common ground . . . sort of.  Children with Down syndrome are also very diverse and varied, so it’s not like every experience raising a child with Down syndrome is the same.  Many of us experienced similar emotions upon receiving our children’s diagnosis; many of our children have experienced the same or similar health issues; on some level, many of us can empathize with each other about the fears and frustrations we experience, and the pain we feel in the face of society’s prejudices towards our kids; many of us have fought the same battles with school districts and can share information and advice with one another regarding things like education and services.  But very often, that’s all many of us have in common – and while that may seem like a lot on paper, in the grand human landscape of life, it’s often very little.  We still all come to the table from diverse backgrounds and belief systems, and we bring with us our own idiosyncratic personalities, values, parenting philosophies, and dreams.  It’s not like when you join this “club,” you’re a dues-paying member who takes a pledge to uphold certain ideals.

My point?  It would be nice if we could all respect each other, but to think that we’re all going to like each other all the time – or even feel supportive of what other parents are putting out there – is unrealistic.  I know I’ve got my detractors, and yeah, it doesn’t feel too good to know that there are people in this “community” who don’t like me or get me.  Likewise, there are parents out there I just can’t relate to, and some I just plain don’t care for.  (And most of them I can just ignore – except for the ones who have a constant spotlight shining on them – those are hard to ignore.)  The awesome, thing, though, is that there are parents out there who you find you actually share more common ground with than just having a kid with Down syndrome, and that’s where actual friendships take root.  And that’s the most I think we can hope for on this twisty, turny path.

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10 Comments on “The Melting Pot”

  1. DS class of 2008
    March 28, 2012 at 9:47 am #

    It’s unfortunate how women tend to tear apart one another and be fearful of those groups with different opinions. Opinions and research will change over time and if we shut our opinions down about a topic or person or therapy or approach, then we all lose. It drives me bonkers specifically when the DS subgroups bully, exclude and label people–it seems obvious why that’s a problem but people cannot understand & relate to my point.

  2. TUC
    March 28, 2012 at 11:59 am #

    I still do think of us as a community… because right now I could rattle off about 100+ names, their kids, their blogs, their life events, where they are in the world, etc. The group hardly changes other than to grow bigger. So in that way I feel we are a virtual community even if we don’t wanna be 🙂

    That said, I feel like certain community members have risen to be the “faces” of the community and their narratives are what the general public hears most about Ds. And obviously their stories, perceptions, feelings, responses… do not represent all of us so there is a feeling of being silenced or dismissed.

    What is frustrating to me is that if you don’t “love it or ignore it”, you get heat. And as you have seen, in some cases the attacks are ridiculously personal and hurtful.

  3. Vonda
    March 28, 2012 at 12:43 pm #

    I couldn’t agree more. And although we are on the same journey, it doesn’t mean we have to like each other. Just like marriage. You marry your spouse, doesn’t mean you have to like the people that come with that person. lol We have our own little local Down syndrome group here, and as much as I’ve tried to “like” every parent in the group, there are times when I realize I can’t….and I say to myself “you know I tried…but if they didn’t have a child with Down syndrome, I know this person would NOT be my friend”. You shouldn’t have to force it. You can’t let the Down syndrome be the only link to friendship and understanding.

  4. ET
    March 28, 2012 at 1:02 pm #

    I am in agreement, Lisa. Sometimes the more I read in these groups, the more anxiety and fear I experience. Being a new parent of a child with Ds, all I wanted to do was to find people like me. I definetly found that and a little more than I bargained for at times. Our children are all so different and I am happy to say that our child doesn’t exhibit every symptom and problem that is discussed. I panic sometimes when I read posts, sometimes I think I am better off just finding out the hard way….I have kind of latched on, so to speak, to a couple of moms (you know this 🙂 who I really value their opinion even though we are miles away. These women take time out of their day to write back to me and that has helped me more than anything else. Thanks for your insight, Lisa!

  5. starrlife
    March 29, 2012 at 4:29 am #

    Interesting post Lisa. I do see and feel a sense of community but not a real hard line around it. I have several interests around my blog and the internet that I enjoy. Perhaps because I don’t have other children I just enjoy getting together with anyone, not just women, that I can talk about my child with. And altho I’m not much of a group joiner I’ve enjoyed beyond words the occasions when I’ve been at a function that was just focused on DS. But I do not abide a lot of backstabbing or judgementalism so I try to stay out of that crowd. As I get older and learn from my daughter I connect to more openness to developmental individualized process and become less defensive and competitive. I can relate to what Vonda said except sometimes I don’t even like my loved ones 🙂 But I do try to accept them just the way they are. Such a challenge. What’s going on on Facebook eh?

    • Lisa
      March 29, 2012 at 4:34 am #

      Are you on Facebook? Let’s be friends 🙂

  6. Andrea
    March 29, 2012 at 5:58 pm #

    “It would be nice if we could all respect each other, but to think that we’re all going to like each other all the time – or even feel supportive of what other parents are putting out there – is unrealistic.”
    I totally agree! I know I got some flack in the comments of your previous Kelle Hampton/Noah’s Dad post, and if I were a better writer, I would have wanted to say it more like what you’ve said here.
    Disagree doesn’t have to mean disrespect, right?

  7. Hannah
    March 29, 2012 at 8:30 pm #

    Well said Lisa, I completely agree. Whilst having a child with Ds is a good starting point, true friendship builds over time, based on a deeper connection then simply an extra chromosome.

    The reality is I think the on-line community in general is trying to advocate for those with Ds, but are doing so at very different levels. Simple answer for me is to respect intentions that are from a good place, but not spend my time connecting with them if they are not providing me with support or deeper reflection.

    Please keep up the writing, I’m always happy to see a new post!



  8. Garden of My Heart
    March 30, 2012 at 4:30 pm #

    I completely agree – and have seen this played out online and off. At first, when you’re scrambling for information because everything is so new, it seems obvious and natural to reach out to the Down syndrome community. You bond instantly over discovering you’re not alone.

    But then you get your sea legs and start to get a feel for who your child is, and as the Down syndrome fades into the background, the differences between your child and others become more apparent…and you realize that your connection was tenuous at best. The moms I consider friends in the Ds community are those with whom I have other, deeper connections – shared faith, similar philosophies on disability in general, appreciation for their sense of humor, appreciation for their world view, etc.

    Thanks for posting!

  9. Sonia
    April 2, 2012 at 1:59 pm #

    I’m happy you wrote this. The only common factor that we have with each other is the Ds factor. However, there are a lot of people in this “community” that I would not consider a friend or would want to be a friend. Just because our kids have Ds does not mean I have to be your new bestie.

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