That one time when: Lessons from the journey

Monday, October 6, 2014

That One Time When is a place where we want to share your stories of how your life has been impacted by someone with Down syndrome! If you would like 
to submit a guest post, just use the "Email Us!" form over there ----->

Today's post is by Ashley Moreno

 We all love Facebook Challenges, don't we? You know the drill: a friend (or sometimes peripheral acquaintance) bends to peer pressure, reposts some viral FB status about being in a horror movie where the cast is comprised of the first nine FB friends (or stalkers) on their sidebar. Or else it's the "25 Things You Probably Don't Know About Me"-- Been skinny dipping? Kissed your significant other's best friend? How did your 1,897 Facebook friends ever think they really knew you without that crucial information?

But once in a while, a Facebook challenge that's truly worthy comes my way. Recently, a dear friend of mine challenged me to post three lessons I've learned on my 9 year, 2 month, and 3 day Down syndrome journey. It was harder than I thought-- I've learned a lot of lessons, most of which seem to revolve around poop. And this girl never passes up the opportunity to tell a good poop story. But this challenge deserved more. This was an opportunity to share some more profound wisdom, summed up in three tidy little points:

1) Slooooooooow doooooooown. Almost nothing is as urgent as you think it is. Your child with Down syndrome often needs a little more time to process things, formulate a plan, and act. Allowing them the time to do that teaches them self-governance skills.

2) You have NO right to force anybody to conform to your expectations of who they should be. Each of us has the right to our own feelings, thoughts, personalities, strengths, and priorities. The fact that they make you uncomfortable or don't conform to your experience is irrelevant.

3) One of the most valuable experiences of human interaction is constructive dialogue. Don't shut someone down because they choose the wrong words. Don't punish another human being for not communicating according to your rules, for not being familiar with the correct terminology, for asking an honest question that you find ridiculous. It has taken the tireless advocacy of generations of parents to bring our children out of the dark corners, to tear down the stigma enough to allow people to approach us and question us. Do we really want to shut down the conversation because someone who's never walked in our shoes dares to say "a Downs child" instead of "a child with Down syndrome"? The alternative is silence....

I probably could have refined those points more, elaborated, waxed more poetic. But then the boy child woke up, and there was poop involved....

Mason and Junie

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