Let’s Talk: The Conversation on the Down Syndrome Diagnosis Narrative…

There is so much in this video that I want to dissect about the Down Syndrome diagnosis narrative, but honestly, I don’t feel like making this a resource post… let’s just talk about it as friends do. Is that cool with you?

But first – watch it if you haven’t:

I feel like there are a million things in that video to unpack.

The age stuff, the post-natal note of congratulations with the sour twist. Comments and moms. Post-partum depression. Detachment from her child, the resolution of grief.

But I think in the end what sticks to my mind the most is her expectation of perfection, that somehow having a child with Down syndrome is akin to a death sentence.

I know there are a ton of books out there with this mourning piece in it, and I feel like every parent blog out there has it as well. Very, very few stories of a child with Down syndrome being born into a family are ones in which the child is received with joy – and the few that I personally know of told me later that they were faking it (which isn’t to say everyone who isn’t upset about finding out their child has Down syndrome is faking it; it’s just the people I knew said they were).

And then those of us who have been raising a child with Down syndrome for longer – those of us who are further in on our parenting journey – maybe tend to get a little impatient with the grief narrative. Even as I myself wrote, the initial fear and period of mourning seem ridiculous in hindsight.

I feel like this grief narrative is inextricably tied with the burden of perfection that we have on us. Western Women. You know, that burden that says that we need to be hot mothers, good looking, successful with our careers, keep a clean house and jive with Pinterest. We need to raise unplugged kids that roam with Waldorf and eat organic food while wearing clothes spun by virgin monks in the alps of some holy country where everyone has brown skin and crystals are in abundance.

You know what I’m saying?

There is NO WAY that any of us can do it all.

But we somehow expect ourselves to be able to.

In that sense, disability has absolutely been a gift to me, because once I gave up trying to pass as non-disabled, it was incredibly liberating – I KNEW I would never get to that level of socially-imposed “perfection” that most everyone else I knew was striving for. My grief over my daughter having Down syndrome had nothing to do with that. My grief was to do with the difficult pieces of having a disability: potential for abuse, discrimination, loneliness, isolation, etc.

In striving to change the narrative of a Down syndrome diagnosis, I feel like we also need to be changing the narrative by and for women. I feel like it’s incredibly hard to just change how we feel about having a child that we know (some) people will be judging us for having: that our bodies were imperfect for having grown a child with an extra chromosome, that our age was imperfect, that we caused something to happen, and that our world will judge us as less-than for having produced and delivered a child who not as valued as others.

I’m not sure I think it’s reasonable for us to expect the grief narrative to go away without some real work on other flavors that influence that particular sauce, you know?

I mean, there’s ableism – discrimination and prejudice against people with disabilities – at play, woven right in with all the misogynstic baloney threading Western culture, and our own unrealistic expections on ourselves.

I mean, when we’ve got posts like this on wearing a swimsuit as a mom going viral, when so many of us women are deeply uncomfortable with our mom-bodies and are nervous about wearing something like a swimsuit in summer, how then is it for us when we give birth to a child with Down syndrome?!

There has been other research conducted about mothers of children with Down syndrome, that we are actually happier than mothers of children without Down syndrome. That once we let go of those expectations on what our child should/shouldn’t be doing by such-and-such-a-time, we are able to just relax and enjoy our child.

That might be so. I am not the best person to ask, since having accepted my own disability, I never had much of a bridge to cross with that one, with regard to Moxie.

But I feel that we need to have a more realistic approach to changing the Down Syndrome diagnosis narrative – that, like I said, it’s not just about ableism. It’s not just a fear of Down syndrome. It’s also the expectations that are placed on us women, which is far more disabling than any disability could really be.

What are your thoughts?

Meriah
is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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2 Comments

  • I appreciate all perspectives, but I have to say that I am one of the parents who celebrated my child’s birth and did not grieve his diagnosis (received the morning after he came out of me), and I NEVER faked that. I simply cannot understand, no matter how much I try, why someone would grieve any child for such a diagnosis. I feel it is society’s problem that creates this fear and despair in parents when they receive the diagnosis, and that through loving their child and realizing that he or she is, simply, a child–a beautiful, wonderful, worthy child–do they work their way through it. But why should they have to work their way through it? Why shouldn’t such a diagnosis be just an “Oh, so there will be some health issues we should keep an eye on, and we’re also going to make sure your baby gets all the services and therapies he/she needs from day one,” and just get on with celebrating the birth of a wanted child?

    I don’t want to minimize the experiences of grief that many parents of children with Down syndrome go through, but I say that were it not for society perpetuating the immense negativity against it, perhaps there wouldn’t be these unpleasant experiences to begin with. Not all people view Ds as a negative–I can’t tell you how many of my friends and family were happy when I told them my son’s diagnosis. I literally had people say, “Oh, that’s wonderful!” and “How great!” NOT the usual responses that all the stories seem to tell. Perhaps that’s why I’ve never grieved for “the child I thought I was getting and didn’t” and all that b.s. I got the child I always wanted and he has shiny brown hair, soulful brown eyes that sparkle with mischief, a smile that captivates bikers and hardened thieves, and also Down syndrome. And even though I had a lot to learn about Ds itself, I never had to learn to love my baby. He was and remains everything I’ve always wanted, period.

    Parents shouldn’t apologize for their feelings of fear and worry–that’s what being a parent is! But to turn that into “I grieved my child’s diagnosis” or “I had to learn to love my child”…that’s society’s fault. When you fear for your child’s future because of a Down syndrome (or other) diagnosis, or worry that they will be sick or not have a good or happy life, that is being a parent. We need to teach people that those feelings are not grief but normal parenthood fears. We also need to teach them not to listen to society’s fearmongering AND we need to change the dialogue that society perpetuates from one of dire horribleness to one of optimistic acceptance. That is how we change minds, hearts, fears…that is how we stop grieving the birth of our babies who aren’t what we may have expected.

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