The Rosy Picture

I recently had a brief but thought-provoking exchange with a fellow mom-and-blogger about the curious phenomenon of painting a rosy picture of Down syndrome. Then I read this blog post and wondered how many scared, sad, or lonely parents there are out there. I realized that painting a rosy picture may be doing some damage to the Down syndrome community itself.

Damage? Yes, damage.

First, let’s talk about some of the reasons for painting the rosy picture.

1. In general, you don’t like to use Facebook, your blog, your general online presence to complain about stuff. Or it’s just not in your personality in general to discuss things.

2. You fear that if you mention even one negative thing about Down syndrome, a mom with a prenatal diagnosis might snatch that single piece of information, run with it, and have an abortion.

3. You fear that if you mention a frustrating/destructive/negative action, people will immediately blame Down syndrome rather than the likely cause being your kid just acting his age, being over-tired, etc. This fear feeds a lot into Reason 2, as well as into a fear of perpetuating negative stereotypes of Down syndrome and/or disability in general.

4. You fear being judged in some way. If you mention a certain behavior, maybe instead of support you’ll get criticism.

I think all of these reasons are legitimate and valid. I know I particularly fear Reason 3, less so Reason 2 or 4…and I have no fear of complaining in general on Facebook so that’s out for me. (Anyone who has read any of my Facebook posts during a campaign season knows I don’t usually mince words.)

But I think these fears damage our community and prevent us from fully achieving the very goals we seek to achieve: inclusion, equality, people seeing the humanity in our children, and supporting each other through difficult times.

It’s a common complaint amongst Down syndrome moms that we are often told how strong, capable, and wonderful we are for raising our children. We’re doing something other people “couldn’t” do. We chafe at this – as we should – because it others us, and others us unfairly. We’re only doing what anyone else would do. We’re raising our kids, and because they’re ours, of course we love them, praise them, and strive to give them the world.

But I challenge the Down syndrome community to think about this: when we only post how awesome our kids are, how blessed we are to have them, aren’t we perpetuating the “our kids are angels!!!!” and “special needs moms are so strong!!!!” stereotypes? All over Facebook I see posts from my friends with typical children describing tantrums, frustrations, food-throwing, hair-pulling…pictures of kids with a little dirt around the edges, pictures of living rooms with a little clutter. You know, kid stuff. I have also never, ever seen a mom with a typical child post “My child is such a blessing!”

Maybe I just have a special subset of Down syndrome mom friends, but it is a rare day when I hear a gripe, a sadness, an “I’m so frustrated!” in relation to their child with Down syndrome. And I’m not saying a gripe about a Down syndrome related issue, just a gripe in general. An “I wish my daughter would stop throwing tantrums – how long til she turns three???”

Don’t get me wrong – I am just as guilty of this as anyone. For every smiling picture of Rowenna I post on Facebook, I have at least 20 still on the camera where she’s food-covered, hair-askew, giving me a dirty look because she wants to play and not pose. These pictures are cute and often hilarious, painting a picture of what it’s really like to have a two year old in the house. But I don’t post them for fear someone will take it and say “See? That poor kid can’t even feed herself, and her mom is obviously so stressed she can’t clean up.”

I’m willing to complain about the weather, the bills, politics…but I don’t complain about having to go to the doctor again, about having to spend more money than usual to find a pair of shoes to fit over orthotics, or waking up with sore muscles because the day before I lugged around a low-tone toddler longer than I should have. Yet I see friends who have typical kids lovingly gripe about the mundane details of their lives. (And let’s face it, in Down syndrome world, finding the right pair of shoes is kind of a mundane detail, right?)

The pressure to be this way comes from within (see Reasons 3 and 4) and from without. The pressure to constantly paint the rosy picture is strong in the Down syndrome community. The implications are sometimes literally life-and-death (see Reason 2).

But is it fair to ourselves and to our children to paint them as these cherubic children who are a constant stream of cute faces and silly antics? There are real struggles to this life, but hard doesn’t mean bad. Or impossible. Not by a long shot. It’s true that the schedule in the first year or so is crazy intense. It’s true that the fears of health issues, discrimination, and exclusion are real and a part of this life. And that’s ok. The challenges do not negate the good in our kids, nor the value of their lives.

When we hear someone is considering termination for Down syndrome, we are so fond of telling these people on the “outside” that their lives are full of challenges, too. We’re quick to list them – typical kids can get drunk, go to jail, work dead-end jobs, live in their parents’ basements. But we never open up about what our challenges are, and so people are left to imagine and assume what the challenges might be, and they often come up with things that are far from the truth… then use those untruths to spread more untruths about life with Down syndrome. It’s a pretty nasty little cycle, isn’t it?

Beyond that, how can I support other moms if I don’t know they’re hurting or struggling? How can I know I’m not alone in my fears and worries if we never share? This is where the external pressure to be positive kicks in. If I never see anyone share anything “negative,” how do I know it’s ok to do so? And if I do, how do I know I will receive support and not condemnation?

I feel like as individuals within the Down syndrome parenting community we are forced to continuously re-invent the wheel when it comes to our own emotional and spiritual health. Even when someone does reach out and ask, they often get responses of “it could be worse,” “I’ve never had that problem,” or a vague “it gets better.” The internet has been a gift to the Down syndrome community, but also a curse. Because these conversations are taking place online, anyone can read them, and you can almost feel the calculation in every sentence – how much is too much? Am I giving the wrong impression?

It’s rare to hear about the actual mechanisms of acceptance and healing – and I type this knowing full well I have never shared the true depths of grief I reached over my own child’s diagnosis. I guess I’m just wishing I could. How many moms facing a prenatal diagnosis read our blogs and forum posts and feel guilty to the core over the depth of their own grief? A grief they don’t often see or hear discussed, and when they do, it’s the abridged version? And how many parents of older children want to reach out, but find only these rosy cheeked toddlers smiling for the camera alongside cute anecdotes?

And before you think I’m advocating for us to pour out our inner souls all over the internet, or to complain daily, or what have you, I’m not. I’m posing this as food for thought – could it be that in our desire to paint the rosy picture we’re losing people – losing our own? And not forming stronger bonds with each other?

If we cannot be honest in our own community, where can we be honest?

So this is my call to the Down syndrome community: let’s face these fears. Let’s celebrate our kids, let’s share their beauty and worth, but let’s also be open – let’s share our own humanity. Let’s reach out to each other and seek help when we need it, cry if we have to. And beyond that, when a mom does reach out, let’s not cringe and pull away, or offer trite reassurance – let’s offer our fullest support and a warm embrace.

Let’s demystify what it means to raise a child with Down syndrome. Our kids ain’t angels, and neither are we.

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8 responses to this post.

  1. Posted by Emma on August 31, 2012 at 12:54 am

    You just said what I have been thinking for a long time…
    What I have been struggling with lately, is I don’t want to complain about all of the appts and therapies and how hard it is to keep up with all of it, because that is who Ruby is and I don’t want people to think I am complaining about her. I don’t know how to really say it, I guess.
    But, yes, I am struggling right now. The last two years have been hard. Really hard. I know it could be worse, but my pastor even told me, it could be better. I am slowly allowing myself to realize that it is ok to admit that this is hard and there isn’t always a “silver lining”.
    I was really hard on myself for awhile because everything I read said the first year is the hardest, then it gets easier and you start to forget about the Down syndrome. I figured there must be something wrong with me, because the second year was just as hard as the first and her appts didn’t really slow down and I still had Ds on the mind a lot.
    So, I am on board for everyone being honest. No more “canned” happy responses of, it will get better or it could be worse. Real support…

    Reply

  2. I love you, Melissa. I love the way you think and the things you write. I am in total agreement with you on this topic. For me, personally, I try to find a balance with regard to what I post about Finn and our life with Down syndrome. I hope I do it honestly, warts and all, but it’s true that it’s a fine line to walk, and definitely fraught with fear about the implications of being *too* open about the struggles and less-than-pretty side of Ds. I also find myself rather turned off by Ds blogs that focus too much on achievement, and am very conscious of not going overboard on the “look what my kid can do” posts about Finn, because I don’t want him to be valued based on what he can do. It’s not that I’m not extremely proud of Finn every time he masters something or whatnot, but isn’t this one of the greatest lessons we’re given when we have a child with Ds – that nobody should be valued based on how smart they are or beautiful, or what they can achieve?

    Anyway, thank you for writing this. I’m going to share it.

    Reply

  3. Very interesting and I agree with the principle. My initial thought is that I often write about just exactly what’s happening with us: the good, the bad and the ugly. I’ve talked about our various surgeries and how they relate to DS, The Boys’ propensity to catch and keep a cold that turns bronchial then trying to avoid the slippery slope to pneumonia, our failure and the resulting multiple bouts of pneumonia and how it relates to DS. I talk about YEARS of potty-training, the in-their-own-time mentality, and my frustration with the process (x2). I’ve written about not having any me-time as a function of parenting a child with special needs… or 3 in my case. Admittedly, I haven’t written much about our academic failures and skirmishes with our teachers and school district b/c the web is not a private enough venue to discuss this topic honestly and not suffer the consequences of having our district possibly read it and potentially punish us for the disclosure. Then again, we’re only just going into first grade… I’m sure I’ll overcome my bashfulness about that soon. I also write about the incredible sense of joy my children bring me and sometimes — though not nearly as often as my friends with typical children — I talk about my kids’ accomplishments. I also feel like most of what I read is about parents of children with special needs having a really hard time with the care of their children… so I must be visiting different blogs than you!

    I think, as a community we need to be careful to remember and to share that the beautiful side IS there (even in our darkest hour) and, for me at least, it is more beautiful as a result of that extra chromosome. I’m NOT imagining that, and my husband agrees 100%. My children with Down syndrome work harder, and are far happier doing so, than my child without Down syndrome. They try, appreciate and celebrate their achievements openly — and me, hubby and sibling along with them — more than my daughter who does not have DS. (She bums about missing 2 points out of 100 and MyLlittle Man screams, “I did it” when he writes the first letter of his name.) We laugh way more because of them. I hear “I love you” more often and get more hugs from them…. even as they awaken from painful surgery or spend another day in the hospital with pneumonia. We should not forget to share the upside of Down syndrome along with the tough stuff or we’re painting a darker picture than the reality! For us, the good outweighs the bad and the ugly daily!…. Bear in mind, you’re asking me on a day that they’re toileting themselves!

    Reply

  4. I wish so much that you could experience the group that I have had the privledge to be a part of. We have all shared that horrible diagnosis feeling, the horribleness (my own made up word) of having a bad day where it’s 3pm and you realize that you’re still in your pj’s and haven’t even been to the bathroom yet because you’ve been so busy but if you look around the house you’ve got absolutely nothing to show for it, the day to day grind of just having kids… not to mention kids with special needs and have even been to each other’s houses on those days to help through those horrible-nesses.

    I have had the opportunity to rant and rave at the top of my lungs, to scream and cry just because we had a crappy day and I can’t figure out why or how to get through to my little man. I have done these things in complete security and with absolute understanding. And I am beyond grateful. There’s no way I would have survived otherwise.

    I hear what you’re saying in your post and I agree with you wholeheartedly. I encourage you and your community of parents and carers to give it all you’ve got and allow yourselves to be raw with each other. The joy that can come from it is amazing. The bonds you will create are never ending. And what you will do for society (and new parents) as a whole will be to allow them the opportunity to realize that our kids are just that. Kids. Like everyone else’s.

    There will, of course, be the odd ignoramus who blames DS and says, “See what you’ve gotten yourself into?”, and there will, of course, be the new Mums and Dads who take what’s been written or said with way more than a grain of salt and run with it. But there will also be those who will really need to hear what we say. They’ll need to know that while our days may not all be good – our lives are totally amazing. And they are that way just because we HAVE kids. Not because of how (or who) our kids are.

    Feel free to vent to me if need be. 🙂 I love living in reality.

    And by the way… my house (while clean) is almost always messy. I do my best and usually tidy things up when the kids hit the hay but by 7am the next day I’m usually wondering when the tornado blew through and how I missed it.

    Reply

  5. Oh Melissa, this was SO good! You said exactly how I feel. I totally fed into it when I first had Abby, too. I think it was a coping mechanism for a while. But then I saw that I wasn’t being fair to her as a HUMAN with real human things like tantrums, illnesses, etc. It wasn’t being true to myself or whatever readers I have. Good for you. GOOD FOR YOU!

    Reply

  6. Love this post. I think I tend to write positive stuff because I’m a pretty positive person, but oh my GOSH, now that Ellie is 18 months, she’s a typical pain in the butt toddler minus the “toddling.” I’m also probably guilty of writing about achievement in academic stuff…. but I feel like I get a professional pass on that one 😉 Bottom line, and Ellie is my only kid so I can’t compare to a “typical” parenting experience, she seems to be wonderful – like other kids, and at times awful – like other kids. And I want to be real about both.

    Reply

  7. […]  There is good and bad to that, to my way of thinking.  My friend Melissa said it best here: The Rosy Picture.  In any case, I’ve always tried to be honest and frank when writing and talking about Finn […]

    Reply

  8. I love this post. I try to balance the happy, good, cute pictures with the real stuff, without being negative. It’s a hard balance sometimes, which is sad. Like you said, I don’t want other parents to hear my complaints and think how glad they are that they don’t have *my* child, when all I really want to say is that I’m over the tantrums!

    Reply

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