Secret Handshakes and Head Nods: The Inner World of the "Down Syndrome Parent"

Having a child with Down syndrome is sort of like being a member of a really small religion… like say, the Baha'i Faith (which I grew up with). It's all so small, so isolated, so misunderstood, so much explaining overall to do that somehow when you connect with another like yourself, you connect in a way that is must be like, wrist-rubbing your blood in a secret club or something.

 

Shaking hands, knowing a password or a head nod, a wink or twitch that shows you are a part of this tribe.

 

Then you get to talk code to one another, usually full of acronyms that sound like passwords. LSA; IEP, ST, OT, PT, what-have-you.

 

You are instantly accepted. Immediately a part of the group.

*****

While dealing with the stupid hurdles The System had set up for me jump through (perhaps just to see how high I CAN leap?), I met a woman, an administrator in said System and immediately noticed her chromosome tattoo (among her many, many others) . I pointed at the tattoo, nodded; she looked at Moxie, nodded. Let me tell you something: those hurdles came down fast.

 

It is amazing to me how we embrace each other within the Down syndrome community. Even in Mexico – when I chased down the little girl at the playground, the small boy in the supermarket – I was immediately accepted by the parents (once they saw Moxie, that is, and realized I wasn't some American psycho freak). Here too. I chased down a young man in who was shopping in a grocery store, talked with him and his Dad at length. Or when I haled the lady with the little girl with Ds at the hot dog joint (you are seeing a pattern here, aren't you?). Yes. I accost people. And they accept me, with open arms.

 

With most parents of kids with Ds, I get the feeling that if I asked if I could camp out in their living room floor for a few weeks, their only concern would be how comfortable I might be, and would offer me a guest room if they had it.

 

This, I have to say, is a fine community to be a part of. It's welcoming, accepting, loving. Good People are in it, the kind that you'd want to call your own.

 

And then – the online communities! Talk about tight-knit forums, groups that hold your back (I don't want to put links because of privacy – but if you would like to know/join, just email me – email address in the 'about us' page). I've made real friendships there with people I've never met.

 

Which brings to mind that interview that Dorie, of Tuesdays with Dorie fame. The one she gave in Oprah. She was asked how she felt having all these "strangers" come into her kitchen and cook with her and she laughed and said something along the lines of, "strangers? these people aren't strangers! I've been cooking with them online for years!"

 

That's really how I feel. I tune in to my friends' blogs and facebook status updates with an eager delight that has everything to do with a connected spirit and nothing whatsoever with something so trivial (in this day and age) as logistics.

 

Yet still. Like Moxie with her friend in the mirror, it would be *really fun* to actually physically meet some day, wouldn't it?

 

Practice our own actual secret handshake and all?

 

****

Note: first published on this blog on July 1, 2011

Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
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@meriahnichols

#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
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19 Comments

  • I had never thought about the Down syndrome community being like the Baha'i community – you're absolutely right!

    We went to a devotional while we were camping last week. I've never met these people before but we were there in their living room, chatting like old friends. I think that's one of the best parts of being Baha'i.

    And I think it's one of the best parts of having a child with Down syndrome!

    Maybe that's why I feel like I know you? We have two different secret handshakes? 😀

    And if you're ever in Wisconsin, you are all welcome at my place!

  • Next time you're passing through this neck of the wood, you guys are all welcome! 🙂 I'll have a bowl of cereal for ya…

  • I feel the same!!! The Down Syndrome Community and my DS mommies are always there for me and even though I don’t personally know them all is like we do! I feel sad when one of our babies is sick, or when one of our moms are going through a rough period, I feel happy for new milestones just like if they’re my own baby’s milestones… and believe or not I do the happy dance every time a new family/mom joins our select club! Oh! and what about blogs??!! I have become a blogadict!! It’s awesome!

    Caroline

  • I'm guessing the tattoo was the three odd shaped things in a row but I know we got a picture of ours and I was at a seminar that explained how they do look different from each other and I'm sure it's tracking all the similarities and differences in them will help solve a lot of medical secrets!

    Psycho American freaks are fun!! What if it was your best friend who saw the tattoo? Here's to many more freaks from America with an understanding of DS and bravery to chat with these families cause many other countries are much less understanding than even ours. Go chat with everyone with lots of different challenges!!

    I love the stalking! I do it a bit but how can you know because uhm I see a lot of markers and similarities all around the world. The second big photo in I'm down with you book looks pretty much exactly like my daughters friend when she was younger. But it's worth the risk cause we should strive for a world where being mistaken for DS is a huge compliment, because it is!!!

    I'm a member by choice of a misunderstood judged religion too that has winks and nods but it's much larger than yours.

    I'm planning in camping at your house already and ours is small but we will find room and slept seven or more visitors for my second baby shower. It can happen and kids don't care and if they do it's too late by bedtime, they are not going to sleep much with visitors in town anyway.

    The online thing is eerie but great too. Read the post from meandmyboysblog, her comment about wanting to blog to reach people she never met is haunting me (in a good way) and for me, I'm thankful to read my thoughts formed by others and others opinions on things I wonder and worry about.

    But I'm most grateful to you all when I think of the parents finding the blogs or whatever when facing the big "decision" in a time crunch and with limited information or too much uncertainty to really find out the truth. For that I pray you and Kelle and everyone, please blog and share away!!! Post about http://www.downsyndromepregancy.com periodically too!!

    Ps people who travel or want to travel need or kinda have a secret handshake too, I was excited to see that!!

  • My step-dad was just telling me the other day about how he saw a father with a child with Ds and wanted to approach him to share about his grand-daughters… but he felt awkward. I laughed and explained how we know we need a signal that instantly show you are "in" the tribe.

    • I could have even introduced you to the woman with the tattoo!

      Next time. For sure. Or better yet, just come down and hang out with us in Mexico/Nicaragua/wherever on the Pan Am Overland!

       

  • Can I thank you for the ease of commenting ? You and I are on the same wavelength about this but you say it so eloquently!  I am not normally a herd/tribe person but DS has changed things in this area for me in many ways. She helps me belong, irony…….

    • I love everything about this post. When we got Lauren's diagnosis during my pregnancy we didn't quite "get it" when people welcomed us the the club we never knew we wanted to be a part of. But it really is the best! 

  • I am one of the parents that usually read the comments, but never comment myself.  I am however finding that being the parent of Ds child sometimes, actually more than you would believe can not be explained to the parents of other children.  Occassionaly I find a parent as in the case of my neighbor's daughter whose son is Autistic who can relate to our family challenges, unfortunately most parents haven't got a clue.  All children are fabulous and a gift from the lord while they are here with us, some just come wrapped in more layers of challenges than others.

     

  • My friend Crittle at  Results Not Typical did a post a while back about a DS gang sign, and how we need a way to tell other families that we're part of the tribe even if our kid isn't with us. Can someone get on that PLEASE? haha. Especially me, I don't have kids, but have spent my time working with kids with special needs for years and years now, so whenever I see a kid with visible special needs out and about, I do a happy dance. I need to find a way to say hi without being totally creepy!!!

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