Day #082Let me just get this out there right now. I had a really rough time adjusting my attitude last night as I put Julia to bed. I’m not sure if it was the last of the stomach bug she’s been dealing with or the contrarianism that her whimsical toddler brain has developed, but let’s just say she was a hot, crabby mess. Don’t buy all of the angelic pictures of squeaky-clean and smiling kids with Ds that you saw on Facebook last week. They can be just as much of a pill as a typical kid.

I’m glad to say the night ended better than it started, but it was Mom that closed the deal and finally got her chilled out.

I watched all of the publicity and exposure that Down syndrome got on March 21st – World Down Syndrome Day (editor’s note: 3/21 is a play on Trisomy 21 – the genetic condition that is the basis of Down syndrome), and I am still blown away at the number of lives that have been touched in one way or another by these extraordinary people. I read the blogs by writers far more articulate than I calling for change and action – not just awareness.

We spent the day visiting Julia’s cardiologist and endocrinologist for her six month check ups. Everything is good, but now the battle front has shifted from heart valves and thyroid hormone counts to attitudes in schools and workplaces – stuff we weren’t even thinking of two years ago as Julia was recovering from her surgery.

As we have settled into the routine and begun to push into the possibilities of her preschool, I’ve honestly been a little mystified at the latent attitudes that would put my kid in a box in terms of her aggregate potential. At one time or another, sometimes from a well-meaning friend and other times from a school administrator refusing to execute the plain meaning of federal law, we and other parents have been told that we need to adjust our expectations of what our children will be able to accomplish.

Our children are often denied even the most basic physical and occupational therapies by insurance companies because they are deemed to have a developmental delay and will not progress in a way that is economically feasible. There are professional educators that have written off our children in the classroom because they have decided they will spend their adult lives never having regular contact with typical peers.

Some call it coming to terms with reality. I say it ain’t reality yet. There are challenges, to be sure, but my deepest conviction is that we have not even scratched the surface in terms of the contribution to the welfare of a community that any kid with Down syndrome can make. Perhaps we need to start redefining our terms of what those contributions are beyond earning potential and worldly accomplishment.

So one week after World Down Syndrome Day, I offer you one more voice of a parent of a kid with Down syndrome and how you can help turn the tide: We can handle the medical issues our kids have. We can push through the ill-executed policies of the school bureaucracy. We can deal with the realities of their condition as they unfold. In the end, every day is World Down Syndrome Day for us.

However…

What’s the one thing that keeps a parent of a kid with Down syndrome up at night? What has, more than once, jolted this father out of a sound sleep? The thought of Julia living her adult life excluded from the vibrance and rhythm of day-to-day life that the rest of the planet takes for granted. We’re afraid that our culture will not slow down and see the beauty that we see every day and decide to invite them in to stay.

So what do we ask? Meet our kids, look them in the eye, tell them from your heart that they, like every other human being on the planet, are hard-wired for struggle in life. But they are worthy of love and belonging.

Be not only aware of Ds, but act on that awareness. Make space – real, substantive space – in your life and your family’s life to know our kids and everyone with Down syndrome deeply, and gently resist the attitudes and institutions that keep them segregated from the mainstream of life.

I think you’ll find – as many have – the effort has a return on investment that will surprise you.

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3 Responses to World Down Syndrome Day Plus One Week – Now What?

  1. Jennifer Munson says:

    Isn’t that the truth? Thank you for, once again, writing so movingly about the frustration and hopes that we have. The difficult irony, for me, is that the one struggle we have raising a daughter with Ds is that the prevailing sentiment still is that we suffer, that her life is not worth living, and that we must be miserable–when nothing could be further from the truth.

    I’m enormously grateful for the changes that have been made over the past thirty years. Nevertheless, when there is ostensibly enough demand for a test to specifically target Ds prenatally for it to be developed, we still have a long way to go.

  2. Chris says:

    Oh crap, Jen. I forgot to even mention that – and the fact that since the mapping of the 21st Chromosome and the development of the first trimester screen, most of the research funding from the NIH has dried up.

    I may need to insert a paragraph!

  3. Jennifer Munson says:

    Just re-read this because it was so good. I’m so grateful for your musings on the subject of parenting our beautiful little ones.

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