world down syndrome day Archives

Stories, Not Socks: Another Way to Celebrate World Down Syndrome Day

If you’ve been reading this blog for a while, you know how outraged I was when the Word Down syndrome Day committee came up with the “Odd Socks” theme to celebrate World Down syndrome Day.
World Down syndrome Day (WDSD) falls on March 21st, which is New Years in Persia and in the Baha’i Faith. It’s also Spring Equinox and the first day of spring. And in this case, 3-21, it represents 3 copies of the 21st chromosome, which is Down syndrome.
Out of all of those cool things surrounding the date, the committee had to choose… socks?
There was an outcry from people in the Down syndrome community and the committee graciously changed the theme from “Odd Socks” to “Lots of Socks.”
They want all of these socks to be fun and oh-so-crazy and represent Down syndrome because, you know, socks look like chromosomes!
This rubs me wrong on so many levels, but simply put, I don’t want socks representing my daughter’s extra chromosome and celebrating her and her tribe through socks does not float my boat.
The money that is now going into sending – yes, sending! – socks back and forth between communities and countries is sickening to me when I think of how little money goes to research and development, local community support, children with Down syndrome in other parts of the world and so forth.
But you know, whatever. Some people really want to do the sock thing. Go for it.

But I won’t be one of them.

I’m going to celebrate my daughter and her tribe this World Down syndrome Day in two ways:

1. Random Acts of Kindness

This is where you practice a suggested 1-3 random acts of kindness, helping to spread love and kindness in honor of everyone with Down syndrome.
How it works:

On March 21st, wear your favorite shirt that celebrates our Down syndrome community.
Choose an act of kindness. Or three!
Have a World Down Syndrome Day postcard printed out if you can, and give it out with the Random Act of Kindness.
Take pictures of your random acts and post them on social media pages with the hashtag #WDSD15.

The NDSC has a great little guide on this, along with ideas. Check it out here.

2. A Day in the Life with Down syndrome

This is a project that I started and I am absolutely thrilled that the Down syndrome Diagnosis Network is now partnering with me on.
The goal of the project is to celebrate a life that is lived with Down syndrome by actually showing what a life lived with Down syndrome is like.
People can write their own blog posts (- and do not need a blog to participate – they can write it directly in the site), upload and embed YouTube videos on their life or typical aspects of their day. They can upload themselves singing a song, or just photos that they took or that typify a day in their life.
And by “they”, I mean a person with Down syndrome. The project is geared towards people with Down syndrome to speak in their own voices, describe their own day.
Families, friends and allies are also welcome to write posts, upload videos and so forth. All stories related to daily life with Down syndrome are welcome.
There is an Instagram account and hashtag #lifewithDs and a facebook page that is promoting the photos and stories – it’s all very cool, very exciting.
Check it out: A Day in the Life with Down syndrome

That’s how I plan on celebrating World Down syndrome Day

I’m going to be looking at photos and reading stories by and for about a life lived with Down syndrome, about a typical day in the life. I am going to post Moxie’s day. I’m going to relish the diversity of our global Down syndrome community, I’m going to share stories and photos with delight. I’m going to practice random acts of kindness, going to try my very best to be a relentless kindness practioner!
And I’m going to keep the socks in the drawer.
*****
More on the site:
A Day in the Life with Down syndrome: http://www.adayinthelifewithdownsyndrome
– tutorials on how to write a blog post, how to embed and add captions to a YouTube video, how to watermark your photos and more are in the Navigation Bar on the site
– there is a team ready and willing to help you upload your own posts – go to “Questions? Contact!” also in the Navigation Bar and we’ll all help
– it’s going to be as awesome as we all make it – please share the site, tag your photos #lifewithDs, add your photos, videos, posts!

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This. “Dear Future Mom”. This…. (bring the tissues!)

In celebration of World Down syndrome Day coming up on 3/21, here’s the best video I’ve seen in a long, long time:

“Dear Future Mom”

I wish I had seen this when I was pregnant with Moxie.

****

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A Day in the Life of a Traveler with Down syndrome

This post is part of the series “A Day in the Life” that is a celebration of World Down syndrome Day – 3/21. For lots of other posts on “A Day in the Life” – or to contribute your own post, please visit Down syndrome Blogs.
***

A Day in the Life of a Traveler with Down syndrome

6:00 – Moxie wakes up first among all the kids, as usual. She stumbles blearily out of the bedroom, signing “Daddy” and sometimes saying “Mama”. She heads straight for Mikey and his arms before mine. Sometimes we play “hot baby”, passing her back and forth between us for hugs. Sometimes she likes that, sometimes she doesn’t – sometimes she just wants something to drink and some blessed cereal. Which she signs for, “cereal”, ‘eat”, “milk”.
7:00 it’s a slow and easy waking for everyone – but by 7, all of the kids are usually awake and either eating or have eaten. Moxie has usually moved into “Dora-Time”.

Dora the Explorer

Dora is Moxie’s heroine, her adored, her beloved. Boots, too. And Backpack, and Map.
She clamours for Dora, or “ohh-waaah” as she calls her, all day long. And I mean that, all day. Long. “ohhh-waaahhh!” and then if you repeat, “Dora?” she nods happily and adds, “boooos” – which sounds a lot like how she says, “poop”, but whatever. The difference is in the context!
If you repeat, “Boots”, she’ll nod happily and move on with “ppppaccckkkk” for “Backpack” and if you say that, she’ll be thrilled to add “ap” for “Map”.
Moxie loves them all but none as so well as she loves that irascible minx, Dora.

watching Dora

So! We were at 7am, just when she usually starts asking for Dora. “oooo-wah?” with so much hope, so much fierce longing in her little voice, that we usually relent. We are pushovers.
8:00 – sometimes we have watched some Dora, courtesy of a downloaded Series 3. Sometimes we have played with some apps on her ipad, but usually she’s had time tethered to her e-friend, the i-Pad, by the time 8 or 9 rolls around which moves us to…

10:00 – this playtime for our little traveler.

If we are camping, she plays around camp with her brothers, if we are by the beach, she plays in the sand,

if we are driving, she plays with her toys, if we are in town, we take a walk to the playground.

Whatever, wherever.

She plays for a couple of hours until…

Lunchtime!

Moxie’s Food Preferences:

Cheerios…

Our little dollop of light would live off of Cheerios if allowed. Scratch that, she’d live off of ice cream if allowed! Her food heaven would consist of cheerios and ice-cream.
Since we want a little more nutrition and plant life in her than what cheerios and ice cream offer, we try tempting her with any number of other things for lunch. She is overall, a pretty good eater. She’ll try almost anything – she likes ceviche, seafood cocktails, Jamaica (a drink made from hibiscus, spices and sugar),

fish tacos.

She will eat anything with rice – she loves rice – and mac n’ cheese. She likes the crispy part of lettuce, tomatoes, cucumbers. She likes many vegetables and likes beans.

She is extremely picky about how you arrange the food on her plate, and woe to the person who doesn’t listen to how she wants things! She’ll wail and refuse food if you have the wrong things touching one another. She’s all about segregation, but the worst part about that is that there isn’t any consistency to it – so you never know if she wants the corn tortilla there… or not. And if she doesn’t, YOU WILL RUE TRYING TO PUT IT THERE.
So we ask, we always, always ask, “Moxie, do you want a tortilla? Yes? Where would you like it? There? No? Okay, how about here?” We wait. We ask. We roll with what she wants.

Now I know for people who don’t have a kid with Down syndrome might think we are spoiling her, or strangers sitting at the next table in a restaurant look at us and sigh, shaking their heads… but you know what? We really don’t give a shit.
Communication doesn’t come easily for her and segregating her food is important to her, so we won’t fight it. Let her be in control of her food arrangement, that’s fine; we’ll be in control of the composition. We don’t need to win all the battles in our relationship.
***
After lunch, we usually rest. That is, we all read or chill out, relax and let sleep come to us if it’s going to come at all. Moxie does usually sleep, and she usually sleeps for a couple of hours.

waking up from nap time, she signs "awake" — waking up from nap time, she signs “awake”

When she wakes up, it’s a mix of play and home-schooling. Moxie sometimes does art, or we go for a walk or we get unpacked or settled in for a night (if we are in hard-traveling mode). It really depends, but this time period, time in between nap and dinner, tends to be the most flexible.

Then there is dinner, which is usually a repeat of lunch before we head on to desert and showtime. Showtime is usually an episode of Star Trek (we are are on Voyager, Season 4), sometimes it’s Magnum, PI. Moxie prefers Magnum and she asks for it, calling it “num”. The theme music is snazzier and hey! The scarves are great and the sunglasses shiny!
It also features lots of water and Moxie is obsessed with water. SHE LOVES HER WATER.
She loves baths! But hates showers! (I want to get her one of those walk-in showers someday; I think she’ll love that – and the cost of walk in baths isn’t out of sight) She loves washing her pits! And climbing into the sink! She loves buckets full of water! And CLEAN; the child loves CLEAN!!
But I digress.
After our show, Moxie either washes up or just brushes her teeth (- which she also looks forward to and accomplishes with no small amount of joyful relish), gets in her sleep clothes (- which she requests in ASL, thankyouverymuch), and snuggles up for some singing. Mikey often sings the kids to sleep.

***

I know that Moxie’s life is unsual – not many middle-class American children with Down syndrome, born of fairly well-educated families receive absolutely no services. Not many families are full-time families, with both parents staying at home. Not many families are trying to travel the Pan American Highway either, in search of their “forever home”.
But that’s the beauty of it all, isn’t it?
That what you find one family espousing, you’ll find another rejecting. Diversity is rampant in the Down syndrome community – diversity of experience, community, culture, beliefs, faith and expression. The one thing that unites us all is that little extra copy of the twenty-first chromosome.
Please head on over to Down syndrome Blogs and read more days from the life.

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