Down Syndrome: Listening as Acceptance

She looked at LP carefully and my throat caught a little.  Here we go.  I made myself smile.

“So… he has Down syndrome?”
“Yes.”

From here, it usually goes few ways:

Awkward, nervous babble with a high likelihood of devolving into something hurtful or insulting.  Or, a connecting story of someone else’s experience with disability or Down syndrome. Those connecting stories are sometimes amazing.  Sometimes they suck.  (Hint: If it starts to sound like one of those “I have a black friend” moments, then it is best to stop and reconsider.)  Then there is the twenty questions game.  Will he walk?  Talk?  Eat?  Understand?

What actually happened, I did not expect.

“So tell me… What is it like?”

Thunk.  I was floored.

Like negative space surrounding an object, what that mom didn’t say let her question stand alone without assumption or judgment.  She wanted to know what he was like, what our life was like, no footnotes or edits.

So I told her what it was like for us.  I told her that things may change down the road, but for now our lives were filled with extraordinary ordinariness.  I tried to explain that there was no one experience of Down syndrome.  We talked about homebirth and breastfeeding, the powerful strength that assumption can have on a child’s future.  She smiled at LP and there was no pity in her face.  Maybe she was secretly thinking something hurtful or unkind, but I wouldn’t know, because she listened more than she spoke.

A little glimpse of what it's like at our house.

A little glimpse of what it’s like at our house.

That mother accepted all I had to say without question, simply because it was my experience.  Listening, in and of itself, can be an act of acceptance, when it is undertaken with no agenda.

If there were more people listening like that mother in the park, I wouldn’t worry so much about my son’s future.

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27 Comments on “Down Syndrome: Listening as Acceptance”

  1. Theresa Shea says:

    Do you find that people want to know if YOU knew about your boy’s Down syndrome advance? Just like how folks now ask if you know what you’re having when they see you’re pregnant? The ability to “know” things, or to think we know things, has altered our perceptions somewhat. I followed the predictable route of homebirthing to homeschooling–both of which were NOT on my pre-pregnant agenda. Love the photo.

    • jisun says:

      I didn’t know you were a home birth and schooler! Yes, we absolutely got questions about knowing prenatally, with the obvious assumption that we should have aborted. I completely agree that the idea of knowing has permeated our psyches and taken us in troubling places.

      I laughed at the end of your comment because I, too, would have never believed I’d end up here. :)

      • vandeblogger says:

        I get asked ALL the time if we knew about Daniel having Down syndrome ahead of time. (No.) I want to say, “You do realize that is basically the LEAST relevant thing you could ask me, right?”

      • Theresa Shea says:

        My children have taken me places that I NEVER expected to go. I had homebirths because of my extreme anger that the medical profession, by pushing (okay, offering) prenatal testing, had “ruined” my pregnancy. My blood test showed elevated chances of having a child with Down syndrome. So there were other steps I could take. I had been so happy to be pregnant, and I felt so healthy, and then . . . How bad could it be? Was I strong enough? Was the *#@& test even reliable. And how stupid was I to not have explored the test more BEFORE naively extending my arm?

        My kids were born when I was 35, 37, and 39. After that first “scare,” I never went back to the doctor. My midwife was amazing. So in some ways I thank the medical profession for pushing me towards having my babies at home. I wasn’t sick. I was pregnant. Had something gone wrong, I would have gladly gone to the hospital.

        In any event, it’s funny how homebirthing DOES so often lead to homeschooling. We skipped kindergarten. Then 1st grade. And . . . My oldest is now in grade 10; he’s 15 and in school for the first time. By the end of this week he might be a “dropout,” and I support him 100%. Below is a link to an article I wrote about homeschooling for my University. If you read it, you will see that I had my own unique educational path. To this day I do not have a high school diploma, but I have a Ph.D. There are SO MANY ways to live a life.

        Ironically, when I tell people that I homeschool my kids (I tell them less and less because it’s always the SAME conversation that follows), they usually say, “I could never do that.” One day I will respond, “Yes, you couldn’t.” Of course, they all assume that I’m patient and kind and smart and … but I’m not (well, maybe sometimes). Homeschooling is the 7 day weekend. la la

        http://www.newtrail.ualberta.ca/en/Archive/Winter2011/Features/Features%20Current/LearningCurve.aspx

        • jisun says:

          Yeah, I think homebirthing is so off the beaten track already, for us, the idea of leaving school seemed like much less of a biggie. Plus, our family already thinks we are fringe lunatics, so no worry about upsetting them. ;)

          “Yes, you couldn’t.” I love that! I too, am finding myself exasperated at the “I could never do that” statement. I understand where it comes from because I felt it too, but now that I’m on the other side, well… you can’t unring that bell.

          I loved what you wrote about learning, that is exactly how we feel! I want them to learn things because they want to, not because they have to. Have you seen that WIRED article that is going around about free schooling? The link is on my Facebook page, it speaks to the entire idea of “natural learning”, if you haven’t read it, you might really like it. :)

          • Theresa Shea says:

            I’ll check out the WIRED article. I’m feeling sad at the moment that my 15 year old is IN school. Cram and forget, that’s what he’s going to do. My solace is that his brain has not developed this as a response. I blame my poor memory on a childhood of cram and forget schooling. In one ear, retain until exam, out the other. My son’s only 2 months in to grade 10, and I’m having a hard time imagining continuing for another EIGHT months! Sheesh. I’m leaning towards doing some online learning if he’s adamant about wanting a diploma.

            Homeschooling in the young years is so fantastic. We used to travel as a pack, going to this activity and that, or just hanging out at local haunts that had emptied of school children. Now it’s hard to find something that all the kids want to participate in. I think the BEST part of homeschooling in the early years is the slow start to days. NOT having to get up and BE anywhere is absolutely wonderful. I still feel like I’m getting away with something.

            • jisun says:

              Yes, as I type this message into my phone, the kids are not up yet and I’m about to make pancakes in my robe! :)

              So glad to have “met” you, I hope I get to hear more about how high school goes for your son. I imagine I’d feel the same as you do. Good luck to you both!

              • Theresa Shea says:

                Ditto to having “met” you. My day with the 2 at home is carving pumpkins and getting costumes in order. Right now my daughter is playing the piano and my son is reading a book. The time to just “be” or to just “be bored” is precious. AND the time to stay in your robe is precious too. I don’t know how much money we’ve saved on clothes by homeschooling!

      • Lori says:

        When they ask if I knew before she was born that Katie would have Ds, I say, “Yes.” That shuts them up!

  2. bgavenda says:

    Thank you! I haven’t yet had this experience, but its probably because I just don’t give people the chance to ask those ridiculous questions like one we had recently, “Does he understand regular language?” Um, no. He only understands pig latin. I love that you had someone want to know about you. How amazing! If only everyone would be so kind.

  3. Lisa says:

    Awesome, just awesome :)

  4. lclilienthal says:

    The older Cooper gets, the more extraordinary experiences like this happen to us. I am certain it will be the same for you and that cute baby.

    • jisun says:

      This is so interesting because I fear the opposite, that as he gets older people might be less accepting. This is the problem of having fear based on no information, I suppose. So glad you commented, it makes me so happy to read that you’re having more of the good experiences as the years go by!

  5. vandeblogger says:

    I love this story. I had an encounter tonight at a restaurant that I thought might be awkward, but instead she told me she’s also a special needs mom and that her son is turning 50 this month. I always find it’s a relief to discover that I’m talking to someone who understands.

  6. Mardra says:

    Rock on, Stranger. You can stay.

  7. My brother has Down Syndrome. I also love when people ask questions without an agenda!
    My blog is about toys for children with Special Needs. One of my recent posts was entitled “(Trisomy) 21 Favorites to Celebrate Down Syndrome Awareness Month!”
    If you have a chance to look at it, I’d love to hear your thoughts!
    Happy Down Syndrome Awareness Month!

  8. Lori says:

    The Down Syndrome Association of Toronto has shared a link to this post on their Facebook page. You’ve gone international! Congratulations and I’m glad the buzz about you is spreading up here in Canada.


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