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.