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down syndrome awareness month

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I’m going to come clean here:

When I first saw “Moxie Dolls”, I shuddered. I think it was the use of “z” in “girlz”, I think it was the bright packaging. I’m not sure. I think it was the “z”.

 

But whatever it was, it was a classic case of prejudice – I hadn’t even really looked at the dolls, nor had I visted their website. Check it out – walk over there for me a minute: MOXIE GIRLZ

 

Their slogans: be true * be you!

and

Every girl has the strength to do something amazing. Anything is possible as long as you stay true to yourself and never give up on your dreams!”

 

These dolls are not Barbie. I like them, I like their message, I like pretty much everything about them.

Check this out:

Yes! A doll with CANCER! She is from the True Hope series – how awesome is that.

Rock on, Moxie.

*****

They sent 3 dolls to my own Moxie and they were a HUGE hit in this house. With my boy Micah, too: he calls them “action figures” and highly enjoys having the perform action stunts like jump out of his helicopter. His favorite is Sportz Doll Avery – because he uses her ribbons (from the gymnastics) as Wonder Woman lassos. Ha. Ha. Ha.

 

Moxie herself loves the bath time Sophina best. It’s cute – she has this skirt thing that floats her in the water, with two little openings on each side of the skirt to place her water kitty and her soap bubbles (that you can pull out and blow real bubbles with). Moxie loves all that and she loves playing with her hair.

What is it anyway with little girls and doll hair? I remember being obsessed with that, too.

Were you?

The dolls all have flat feet – no Barbie high-heel arches. The bodies of the dolls are not twisted into some unnatural position, or have startling doll-boobs. With the exception of their big eyes and cosmetically-enhanced faces, they are about as real-life as a doll can get.

 

Which is another thing that I like about them.

***

October was Down syndrome Awareness Month and we are still celebrating it through a  Month with Moxieliving life with moxie.

In honor of this, and still celebrating! – Moxie Girlz will be giving away 3 dolls – separately – to readers of this blog.

To enter, just fill out the Rafflecopter below

a Rafflecopter giveaway

Terms: Open to the US only. Giveaway open for one week, closing at 11:59 on 11/18/12. Winner must have email included in entry.

Month with Moxie: Celebration Giveaway

Moxie was born in May 2010 with a prenatal diagnosis of Down syndrome. She had already miraculously healed from her diffuse fetal hydrops and the holes in her heart. She was named "Moxie" as she had shown that she was full of it: courage. Verve. Vigor.

Moxie has challenged us to do the same: to live our life, our one precious life, with a little moxie.

***

October was Down syndrome Awareness Month and we are still celebrating it through a  Month with Moxieliving life with moxie.

 

We have a host of awesome Awareness Champions that will be helping us all celebrate by giving you really cool products they made or produce.

 

Today's Champion is Kenna, creator of Amathia Soapworks. A bit more about her:

 

Amathia Soapworks became Kenna's version of the 9 to 5 in March of 2011, after over 8 years of formulating, testing, and learning. All of Amathia's products are made in small batches with the highest quality ingredients, while being as close to the Earth as possible. Sustainability and eco-friendly business practices always ties into formulation, packaging, marketing, and sales.

 

Each product and formulation is extensively tested by Kenna, as well as her family and friends, before it is produced for you. If it’s not good enough for her skin, her husband’s skin, or the skin of her children, it is not good enough for anyone.

Moxie is a wondrous blend of citrus, cucumber, and jasmine for the perfect stimulating combination with a sweet undertone. Full of spunk and sass, but mellow and chill when enjoyed in the bath, Moxie was formulated with the assistance of Kenna's toddler whom the soap is named after. The little one chose the base fragrance, each of the colors, and helped paint the shimmery tops on the very first batch. Moxie quickly became her favorite soap for bathtime, and has become a standard part of the Amathia Soapworks line.

***

How cool is this? I mean, really.

To enter, just leave a comment on the Rafflecopter below – extra options are also available. US only. Winner selected randomly in ten days (11/12/12).

 

a Rafflecopter giveaway

******

More Amathia BodyWorks – Please check them out – awesome soaps, awesome prices.

 

 

 

Elections are coming up here in the United States and it seems to be an especially heated one. There is much at stake: health care, veteran and disability services… and more. All sides are riled up, memes are flying and the internets are a'buzz.

I asked my friend Melissa, who blogs at Garden of My Heart if she would write a post on voting, politics and disability. I think the pieces that she talks about are the bottom line that we, parents of children with disabilities (and/or people with disabilities in our own right), need to be concerned about – regardless of what party we are voting for.

I am sharing her guest post in lieu of a link to a post of my own. I think I'm in the hospital right now, recovering from a c-section.

Thank you, Melissa.

*************

It’s easy to be discouraged by today’s political climate. It seems like there is a lot of name calling and lying and just a lot of behavior we wouldn’t tolerate from our own children, much less the men and women we elect to represent us. It’s easy to tune it all out, and it’s definitely easy to simply not participate. In such a polarized climate it is more important than ever for genuine voices speaking personal truth to be heard loud and clear by our elected officials.

 

I challenge you to participate in the upcoming election. There is incredible power in political advocacy, and especially so in disability world where advocacy is a completely bipartisan exercise.

 

Disability affects each and every one of us. We all have a loved one, a friend, a neighbor, a classmate, a coworker who could fall into this category. It is also the only minority group that anyone could possibly join at any time, and since all of us are aging, even if we do not become part of the disability community, we will benefit from the service system in place for the elderly and those with disabilities. Whether you bleed red or blue or otherwise, disability issues affect us all.

 

Indeed, the rights demanded by the disability community all cross over into the so-called typical world – they are issues of human dignity, not simply how much we can get for our tax dollar, or how many services we can acquire. Access to safe and reliable transportation? Access to the workforce, equal pay for equal work? A way of approaching job placement that better pairs workers with jobs? Access to quality health care?

 

These are all things that are a benefit to everyone in our country.

 

And since these are long-term goals, a bipartisan approach is absolutely essential. Elected officials come and go. They are members of certain committees during one term, in positions of lesser power the next. Perhaps someone you thought was an enemy because they are a member of the “wrong” party has a child with a disability and would actually like to do more for disability advocacy but needs a nudge in the right direction. Or maybe they support these programs already but hearing about an additional angle only bolsters their support. (A good example of this is an elected official who is passionate about veteran issues – there is a lot of overlap with disability issues.)

 

Everyone is a potential ally in the disability advocacy movement. It doesn’t matter their party affiliation, their personal politics, or really even their voting record. Everyone needs to hear our voices’ and our children’s voices.

 

At a time when our country feels bitterly divided, it feels good to advocate for something that is a benefit to all.

 

You don't have to be a policy wonk and you don't have to spend your days at the capital. But we have to participate. We have to pick up the phone, pick up our pens, type out an email. We have to invite them to our homes, to our places of work, to our IEP meetings. We have to challenge them, and question them, and ask them to make good on campaign promises.

 

And above all, we have to vote

*****

So now that we’ve talked about some of the warm fuzzies of political action, here are some ways to get active:

-Find out about the accessibility of your polling place. Do they have accommodations for voters who need the ballot read aloud? Braille ballots? Polling booths that are low enough for people of different heights to use? (including those who use a wheelchair) Entry ways wide enough to accommodate a wheelchair?

-Do the people you know have the proper id required to vote? Is there something you can do to help someone vote? A ride to the polls, assistance in obtaining id? (Read more about issues faced by adults with disabilities here.)

-Watch this video from the National Forum on Disability Issues to get a better understanding of Romney’s and Obama’s views on disability issues.

 -Email, write, call, and tweet candidates at all levels of government. Don’t be afraid to ask tough questions and to be persistent in getting real answers. Disability Rights Wisconsin compiled a good list to start with here. (contains Wisconsin specific statistics, but the questions themselves apply nation-wide)

*****

And now! Time for our FINAL October Down syndrome Weekend Blog Hop!

Please select and share either a new post or a favorite past post by adding the direct URL for the post in the linky below.

 

Blog Hop will be open until Sunday, October 28th, 11:59 Pacific. Blog Hop will be archived on the T21 Alliance and Down syndrome Blog Sites (links below).

For more on what a Blog Hop is, for optional prompts and other information, click HERE

 

HOP ON!

******************************

 

 

Blog Hop Code:

There will be a link "get code" at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

 

Blog Hop Button:

Share this Hop! The more the merrier! (note: it works in the sidebar, not the main page – but if you have issues, email me)


THANK YOU!

*****************************

Other relevant links:

Down syndrome Blogs

T 21 Writers Alliance – The International Alliance of Writers for Down syndrome

facebook page

informal facebook group page

 

 31-for-21:

31 for 21 is a daily blogging endeavor to raise awareness about Down syndrome. To participate and/or learn more, please visit 31-for-21 at Big Blueberry Eyes

 

From NDSS:

The National Down syndrome Society has created a Blogger Guide – which includes links to a preferred language guide, resources and lots of suggestions for doing more – and springboarding to greater action. Check it out HERE.

*****************************

October Down syndrome Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!

 

Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.

 

For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.

 

Blog Hop will be open until Sunday, October 21st, 11:59 Pacific. Blog Hop will be archived on the T21 Alliance and Down syndrome Blog Sites (links below).

For more on what a Blog Hop is, for optional prompts and other information, click HERE

 

HOP ON!

******************************

Blog Hop Code:

There will be a link "get code" at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

 

Blog Hop Button:

Share this Hop! The more the merrier! (note: it works in the sidebar, not the main page – but if you have issues, email me)


THANK YOU!

*****************************

Other relevant links:

Down syndrome Blogs

T 21 Writers Alliance – The International Alliance of Writers for Down syndrome

facebook page

informal facebook group page

 

 31-for-21:

31 for 21 is a daily blogging endeavor to raise awareness about Down syndrome. To participate and/or learn more, please visit 31-for-21 at Big Blueberry Eyes

 

From NDSS:

The National Down syndrome Society has created a Blogger Guide – which includes links to a preferred language guide, resources and lots of suggestions for doing more – and springboarding to greater action. Check it out HERE.

*****************************

Many years ago, I took care of an old man with Alzheimer’s.

For over six months, I fed him, gave him his showers, dressed him, kept him company, wiped his butt, took him for walks.

Fended his ‘crazy’ spurts – like when he tried to hit me all the way out of the house, then locked me out and was laughing maniacally through the window (oh yes. Ha. Ha. Ha. ).

the old man

I took care of him because in the initial interview, I took to his wife – I really liked her. With dark circles under her eyes, she was completely overwhelmed, struggling to care for him 24/7.

But man…. the love she showed her husband! The tender way she looked at him! He had no idea who she was but still. She didn’t skip a beat. I wanted to help her. So I joined ship.

his wife

That period taught me a lot, you know. I was in such a raw state in my own life and self that I could not bear to be touched.

But this old man could sometimes only be soothed by my holding his hand. I’d have to hold his hand and get to this place of stillness inside myself and let that energy come across…and only then would he quiet whatever agitation might have stirred up.

But somehow in that all, he taught me how to hold hands. He taught me how to open up to other people again from a trusting heart space.

****

I’d watch him for hours as he gazed outside.

He saw things that I didn’t. I wondered what they were.

the old man, looking out the window
I’d wonder if his glasses were magical, that through them he could view other worlds. I’d wonder at the workings of his mind. The path of emotion that he walked upon.
You could say he was suffering, but while I’ll never know for certain, I don’t think it would be true. He looked just fine to me. His mind was almost gone to another place, that is true, but for the most part, he seemed happy and healthy.
The people that really could have been suffering in this were his family. His many children. His bright wife. But to suffer or not was their choice and they chose to not.

They consciously chose to take his Alzheimer’s in stride and learn and grow as a familial unit. Bond ever-tighter. To request help when they needed it (enter me), but to form a net of pure love and catch this man who meant so much to them.

 Alzheimer’s was a tragedy in that it took this man, while alive, from his family.
It was a gift in that it allowed them an opportunity to grow – in spirit, as a family – that they may not have had otherwise. Who knows? But they saw it that way, they took it that way and let me tell you: it had some results. They were lovely people.
****
 Now my daughter has an extra chromosome.
A lot of people like to say that she’s afflicted, that she’s suffering from the Down syndrome. I don’t know if she is. She doesn’t seem like she is.

 But what do I know? Maybe this is the face of “suffering” and “affliction“?

I like to think that she’s a maverick spirit that wanted to experience the world from a different perspective.
I like to think that she’s pushing me to understand unconditional love.
This little girl will never fit into a box; any box. The very nature of Down syndrome means that you don’t know what is going to happen.
I need to love her as she is. In this very moment. With the future as it unfolds, however that may be. 
I think this is worth learning. And so I thank my lucky stars that this person is in my life.
my little Maverick. In front of the big painting of the Old Man, looking out into his garden through his magic glass and seeing his young self out there
(originally posted on April 9, 2011)

Month with Moxie: Celebration Giveaway

Moxie was born in May 2010 with a prenatal diagnosis of Down syndrome. She had already miraculously healed from her diffuse fetal hydrops and the holes in her heart. She was named "Moxie" as she had shown that she was full of it: courage. Verve. Vigor.

Moxie has challenged us to do the same: to live our life, our one precious life, with a little

moxie.

***

This month is Down syndrome Awareness Month and we are celebrating a Month with Moxieliving life with moxie.

 

We have a host of awesome Awareness Champions that will be helping us all celebrate by giving you really cool products they made or produce.

 

Today's Champion is Gwen, creator of Carlito's Creations. A bit more about her:

 

Gwen is an IT professional with a great love for crafts and recycling. What better way than to combine them both?!?! She came up with this idea while looking for a new ID Tag for her Chihuahua, Carlito, and figured out an inexpensive way to make him an ID tag made from recycled bottle-caps. She started just making them for all her friends' dogs and then decided to branch out and sell them on etsy.

Along with Pet ID Tags, she also makes personalized key-chains and magnets all from recycled bottle-caps. With Carlito as her right-hand man, she is gaining a fan base and having so much fun in the process! Please check out Carlito's Creations on etsy (www.etsy.com/shop/carlitocreations) and on Facebook (www.facebook.com/CarlitosCreations).

For all you Moxie fans, if you order during the month of October, you can use the coupon code GOTMOXIE15 and get 15% off your order!!!!

*******

To enter: just fill out the Rafflecopter below!

a Rafflecopter giveaway

 

Details: Giveaway open to US residents. Open from 10/17/12 – 10/24/12, winners  announced directly via email.

This is one of those posts that I like so much that I'll probably still be whipping it out when all of these kids are 30, married and working. And they'll be all embarrassed, 'grrrrr, could you STOP re-posting that post already?'

I'll probably stop then.

But not before then.

Just cuz I like it.

******

 

hey! it's you!

 

I'm glad you are here, cuz I want to talk

 

see, it seems like people have some silly stereotypes about me – and my peeps with extra chromosomes

 

you wouldn't believe some of the stuff I've heard!

 


 

…like people with Down syndrome always having bowl cuts

 

 

ha!

 

 

Sammi's cracking up over that one, too

 

 

Or that we are happy all the time – because let me tell you, I can howl with the best of them

 

and so can Ellie!


 

and Verity!

 

   

and Coop… when he gets going, I can hear him all the way FROM CALIFORNIA!

 

Ollie says, "sshhh" – oh, okay

 

hmm… what else…? Oh! I know! That we aren't dapper dressers!

 

 

Anthony, the original Mr. Dapper

 

 

Manolo, the Cool Cat

 

Verity, Mistress of The Shades

 

 

…or that we are not beautiful

 

 

my friend Mia is simply stunning

 

 

so, too, is Verity

 

 

and Ollie! (all right, all right, you are HANDSOME, not BEAUTIFUL!)

 

 

where do people get this malarkey from anyway? or how about that we are not strong? that low tone equates a lack of strength?

 

 

tell that to Strong Man, Evan

 

 

..or that we are not tight with our siblings…

 

 

Broden and his bro's

 

…or that our mouths are always open, tongue out!  

 


 

 

yeah, right

 

 

…just try and make me open my mouth!

 

 

…you know… bowl haircuts, tongues, tone, whatever – anything that makes us other than who we really are

 

 

sparkling

 

 

playful

 

uniquely lovely

 

 

spririted

 

 

and with spirit

 

 

We are children. As any other. With or without extra chromosomes. See us beautiful.
It's who we really are.

 

** love and thanks to the mommies who trusted me with the photos of their precious little ones – tune in and follow those with blogs to stay connected **

 

Samantha: The Bates Motel
 
 
 
 
 

Back when I was pregnant with Moxie but without any moxie of my own, I was slip-slithery-sliding all over the place in treacly grounds of depression. I was struggling for a type of..what is the word?Relief. That's it. Relief. I was so consumed with worry about who Moxie would be, about her future. Grappling each and every one of my rather massive stereotypes and let's be honest here, prejudices against Down syndrome.

 

Down syndrome, after all, was the one and only disability I had always been terrified of. Prayed I'd never have a connection with.

 

Nothing helped me. Not the stories about the "good nature" and "sweetness" of people with Ds. Not the "inspirational" stories that left me feeling completely bummed out that it seemed the only thing I could look forward to was Moxie being a bagger at Safeway. Or a stocker at Starbucks. Great, thanks. Not to sneer at any work – all work has meaning and value – but is this something I'd dream of for my child? No.

 

I'd cry daily. Lock myself in my office at work because I knew I couldn't be trusted to stay dry-eyed if someone spoke to me of my growing pregnant belly. And come on, who cries when people ask you how you are while pregnant? "You look great, Meriah" "WAAAAAAAAAAAAAAAAAAAAAAAAAAAA"

 

Finally – finally! – I came upon Conny Wenk. She who should be bottled and passed out like a magical elixir to parents like myself. Because she was magic. Her images gave me comfort, vision. Through the power of her lens, she gifted me with a new image of Down syndrome, one of beauty.

 

Through her work, for the first time in the whole journey of finding my moxie, I found relief.

 

It was her photo series of Laura Bruckmann that did it:

 

    Thank you, Conny.

Seeing a girl that looks like my daughter doing something so lovely. Expressive. Captivating. Entrancing. Means the world to me.  


I guess this is what inspiration is all about.

 
 

Showing me that our kids can be whomever they want to be. They can be powerful They can be grace. They can be movement and yes, they can be beautiful.

 

 

*****

Conny lives in Stuttgart, Germany (the very city my Great Grandpa emigrated to the US from!) and is a professional photographer. Her delightful daughter has Down syndrome and she started a photography note of "A Little Extra" (she also has autism, adoption and 46 plus categories, among others). She captures a stunning variety of families with all the joy and love-life-stuff simply haloing about them like so much a dazzlement of humanized happy sprites.
 
 
Here's Conny's Bio:
 
Photography has always been Conny's great passion. 
 
But thanks to her wonderful daughter, her passion became her profession. 
 
Ten years ago, when Juliana was born and diagnosed with 
Down Syndrome, Conny's world seemed to fall apart. 
 
After she recovered from the initial shock, she began to see with new eyes. 
 
She became aware that real beauty is much more than meets the eye, and how symmetric the face and body are. It‘s the inner beauty. Somebody with a beautiful mind and soul is a very beautiful person. And a happy one! 
 
Conny loves photographing children – no matter how many chromosomes they have. She's also the author of five books about down syndrome who have received acclaim and recognition. These books are cherished by pediatricians, field professionals and parents as they candidly show, through heart warming photography and intimate narratives, the love betrween families and friends and the joy that children with the extra and magical chromosome bring to their lives.

Conny has a 2013 Calendar out, chock-full of her magic. She's going to give you a copy in honor of this month being Down Syndrome Awareness Month. Conny will be shipping this you from Germany, so this giveaway is open to the world.

To enter:
– Leave a comment on this blog: What do you love?

 

(winner decided by random.org)

 

I'm trying to keep this simple, so no extra entries for anything (too hard to count it all and rafflecopter is always breaking down). It would be pretty awesome if  you "like" her page on facebook, show her some love.

And hey, "like" our page too, if you haven't – or do the "follow" thing on twitter.

Giveaway ends: 10/22; winner will be announced via email (so you have to include a way to reach you!) on 10/23, unless I give birth, in which case the winner will be announced as soon as possible.
 

Even if you don't want to participate in the giveaway, how about going to her facebook page and "liking" her? And definitely visit her blog and site. It'll make you happy.

Note: All photos on this post are the images and property of Conny Wenk – also check out her site, The Girl with The Freckles, also a book.


 

October Down syndrome Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!

 

Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.

 

For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.

 

Blog Hop will be open until Sunday, October 14th, 11:59 Pacific. Blog Hop will be archived on the T21 Alliance and Down syndrome Blog Sites (links below).

For more on what a Blog Hop is, for optional prompts and other information, click HERE

HOP ON!

******************************

 

Blog Hop Code:

There will be a link "get code" at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

 

Blog Hop Button:

Share this Hop! The more the merrier! (note: it works in the sidebar, not the main page – but if you have issues, email me)


THANK YOU!

*****************************

Other relevant links:

Down syndrome Blogs

T 21 Writers Alliance – The International Alliance of Writers for Down syndrome

facebook page

informal facebook group page

 

 31-for-21:

31 for 21 is a daily blogging endeavor to raise awareness about Down syndrome. To participate and/or learn more, please visit 31-for-21 at Big Blueberry Eyes

 

From NDSS:

The National Down syndrome Society has created a Blogger Guide – which includes links to a preferred language guide, resources and lots of suggestions for doing more – and springboarding to greater action. Check it out HERE.

*****************************

Month with Moxie: Celebration Giveaway

Moxie was born in May 2010 with a prenatal diagnosis of Down syndrome. She had already miraculously healed from her diffuse fetal hydrops and the holes in her heart. She was named "Moxie" as she had shown that she was full of it: courage. Verve. Vigor.

Moxie has challenged us to do the same: to live our life, our one precious life, with a little

moxie.

***

This month is Down syndrome Awareness Month and we are celebrating a Month with Moxieliving life with moxie.

 

We have a host of awesome Awareness Champions that will be helping us all celebrate by giving you really cool products they made or produce.

 

Today's Champion is kudu-lah, creator of whimsical characters and fun fantasy things who says:


kudu-lah is a husband-wife duo based in New York City. Harnessing the power of AWESOME, Kenny and Jenifer Kudulis, bring you monster-like characters that are inspired by folks seen traveling through the streets and subways of NYC. Each critter has its own name and bio too!

Each individual piece of artwork is lovingly handmade by us with our unique photo transfer process and finished with a UV protector. Each piece is signed, named and dated with the year. Larger pieces are numbered in a limited first edition.

Whether the critters are attacking a ship or hanging out in a picturesque sylvan scene, kudu-lah art is guaranteed to bring a smile to your face. You might even see someone you know in our collection!

… I know I see a little bit of my Moxie in the "moxie"!!

It's fun and quirky

With a dash of happy

and um. "Spice"

It's the perfect little onesie for someone with some moxie

kud-lah will be giving away 4 of these handmade, pink American Apparrel onesies – thank you, kudu-lah!

They are all  infant sizes – 3-6 months – but they will probably fit older children if your child is petite like my 2-year old Moxie. Please visit the kudu-lah shop on etsy and show them some love.

*******

To enter: just fill out the Rafflecopter below!

a Rafflecopter giveaway

 

Details: Giveaway open to US/Canada residents. Open from 10/11/12 – 10/18/12, winners  announced directly via email.

http://www.etsy.com/shop/kudulah

October Down syndrome Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!

 

Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.

 

For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.

 

Blog Hop will be open until Sunday, October 7th, 11:59 Pacific. Blog Hop will be archived on the T21 Alliance and Down syndrome Blog Sites (links below).

For more on what a Blog Hop is, for optional prompts and other information, click HERE

HOP ON!

 

Blog Hop Code:

There will be a link "get code" at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

TO ADD THE HOP CODE:

Just copy and past this:

 

<!– start LinkyTools script –>

<script src="http://www.linkytools.com/basic_linky_include.aspx?id=164825" type="text/javascript"></script>

<!– end LinkyTools script –>

 

Into the HTML view of your post. Switch back to visual. If you don't see it immediately, that's okay. It's usually only visible after you've made it live by posting it.

 

Blog Hop Button:

Share this Hop! The more the merrier! (note: it works in the sidebar, not the main page – but if you have issues, email me)


THANK YOU!

*****************************

Other relevant links:

Down syndrome Blogs

T 21 Writers Alliance – The International Alliance of Writers for Down syndrome

facebook page

informal facebook group page

 

 31-for-21:

31 for 21 is a daily blogging endeavor to raise awareness about Down syndrome. To participate and/or learn more, please visit 31-for-21 at Big Blueberry Eyes

 

From NDSS:

The National Down syndrome Society has created a Blogger Guide – which includes links to a preferred language guide, resources and lots of suggestions for doing more – and springboarding to greater action. Check it out HERE.

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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?

 

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

I am delighted to be guest posting over Mamapedia today. It's a post called,

What to Say When You Hear My Daughter Has Down syndrome.

 

It's an early post that I wrote, shooting straight from my heart and I hope you will go over there and read it (the original post is here: What to Say..)

 

For those of  you that are visiting here from reading my post on Mamapedia, welcome!

It's good to have you and I hope you will stay awhile and we can get to know each other.

A quick blog introduction: this blog is organized into 3 categories: Disability, Travel and Family. If you want to read just one category (or another), simply stay in that section. If you'd like to read more posts on any of the categories, just search the blog for what you are interested in. I'm still catching up on reformatting my 1,000+ posts, so some posts might be a little hard to read. Sorry about that.

 

We can also connect over on facebook, or on twitter, pinterest, instagram (meriahnichols)take your pick – I'm all over the place, but of course, it's just for you.

***

Like Mamapedia said, this is National Down syndrome Awareness Month. Here on this blog, we are having bi-weekly giveaways for our Month with Moxie, celebrating Down syndrome – join in!

So far this week, we have a beautiful silver necklace, gifted from Bella Tu Jewelry (to enter, just click HERE), and also an e-book that I made, with photos and quotes from this blog (see sidebar to download the book or pdf or click HERE). We'll have another giveaway tomorrow from Sweet Redemption. Stay tuned.

 

On Friday, this blog will also be one of the hosts for a Weekend Down Syndrome Blog Hop – come on back and visit some fantastic blogs from the Down syndrome Community.

 

Thanks for stopping by, thanks for all your kind comments on Mamapedia, and thanks for celebrating this month with me.

 

And with Moxie.

 

 

 

I am delighted to be guest posting over at To the Max today, on the Parents website. It's a post called,

What People With Down Syndrome Bring To The World: EVERYTHING and I hope you will go over there and read it.

For those of  you that are visiting here from reading my post there, welcome! I have to say, your timing is impeccable, coming by for a visit right when I'm hosting a celebratory giveaway!

 

It's good to have you and I hope you will stay awhile and we can get to know each other.

 

A quick blog introduction: this blog is organized into 3 categories: Disability, Travel and Family. If you want to read just one category (or another), simply stay in that section. If you'd like to read more posts on any of the categories, just search the blog for what you are interested in. I'm still catching up on reformatting my 1,000+ posts, so some posts might be a little hard to read. Sorry about that.

 

We can also connect over on facebook, or on twitter, pinterest, instagram (meriahnichols)take your pick – I'm all over the place, but of course, it's just for you.

****

Month with Moxie: Celebration Giveaway

Moxie was born in May 2010 with a prenatal diagnosis of Down syndrome. She had already miraculously healed from her diffuse fetal hydrops and the holes in her heart. She was named "Moxie" as she had shown that she was full of it: courage. Verve. Vigor.

 

Moxie has challenged us to do the same: to live our life, our one precious life, with a little moxie.

***

This month is Down syndrome Awareness Month and we are celebrating a Month with Moxieliving life with moxie.

We have a host of awesome Awareness Champions that will be helping us all celebrate by giving you really cool products they made or produce (see below for the full list of the Champions).

 

Today's Champion is Bella Tu: Bella Tu means "beautiful you" in Italian, and this is what owner/creator Lisa says about her art:

 

The art of personal adornment is a way of fulfilling a deep longing for individual expression and beauty. I love making beautiful, fun, funky jewelry that brings joy to people and helps them celebrate who they are. I love that my pieces, especially the necklaces in my word pendant series, can serve as inspiration. To me, Moxie means exhibiting spirit, sass, pluck, or courage in the face of difficulty – and that, is always a beautiful thing to see.

Bella Tu Jewelry is giving away this gorgeous must-have necklace for any daring, plucky person!

This inspirational word pendant measures approximately 0.5" (1.5 cm) wide and 3/4" (2 cm) tall, is handcrafted in fine silver, oxidized, and then hung on a 18" sterling silver chain.


For your own order –
**Word pendants can be custom made. Choose your favorite word or name. The length of the word will dictate the size of the pendant. Message Lisa through her shop for more details **

For this necklace, just leave a comment in the rafflecopter below or in the comment box or on With a Little Moxie/facebook  –

What is beautiful to you?

a Rafflecopter giveaway

 

United States only; Giveaway ends Monday, October 8th at midnight, Pacific time. Winner announced Tuesday, October 9th.

For more on BellaTu:

Shop

Facebook

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Our Down syndrome Awareness Champions for this month are:

Another Celebration Giveaway will be held on Wednesday! Stay tuned.

 

October is National Down syndrome Awareness Month. It's the month in which we – members of the Down syndrome community – reflect on what a tiny little extra chromosome has brought to our lives by way of our children, our friends, our community.

 

It's a special time in which we strive to share parts of our lives, experiences, to bring awareness of what Trisomy 21 actually translates to within the life of an individual, a family.

 

Last year I participated in a marathon blogging event, 31-for-21. I blogged daily about Down syndrome.

 

This year, I will be hosting a weekend Down syndrome Awareness Blog Hop, along with my friend, The Unknown Contributor.

 

I also feel like celebrating.

 

The thing is, having Moxie changed my life. More than in the typical, 'gosh, I had a baby girl, my life has changed!' way. Having her changed my life as it gave me the opportunity to confront many of my greatest fears. It created in me a desire to live my life authentically, with courage, despite how difficult that might be. I quit my job because I had her. I started to do things that felt wonderful, spiritually, because I had her. In fact, feeling good in my spirit became a priority after I had her.

 

***

Sometimes the very thing you fear the most to do is the very thing that will set you free. Live your one precious life with a little moxie

***

I want to celebrate Moxie, I want to celebrate living life with moxie. I want to celebrate all the joy that she has brought to my life, the joy that all children bring. I want to celebrate the gift of an extra chromosome.

 

Since I will be giving birth in October, it's also a time of new life: more celebrating!

 

In the spirit of this, there will be a bi-weekly – and sometimes tri-weekly – giveaway here on this blog. In this "Month with Moxie", celebrating a life lived with moxie, we will be giving away presents from shops with Moxie as well as other Awareness Champions on Mondays, Wednesdays and often also Fridays.

 

It's going to be fun!

Stay tuned.

It's going to be more than a month-long giveaway, from Champions from Etsy, Signing Time, Ergo, Tiny Love and more.

 

It's that time of the year again – October! With the leaves turning crispy and colorful in other states of this country and with the air turning degrees cooler, we are also brought National Down syndrome Awareness Month (courtesy, I believe, of the Reagan Administration).

 

This year, my friend,  the Unknown Contributor, and I will be hosting a Ds Awareness Blog Hop as a part of the T21 Writer's Alliance.

First things first: What is a Blog Hop?
 
A blog hop is when bloggers enter their url and blog name in a “linky”, which comes up as a collected list. From there, bloggers click and follow other members on the list to read their posts.
 
A blog hop is a pretty fantastic way of meeting new bloggers, connecting with friends from your niche.
 

October Down syndrome Weekend Blog Hop

The point of the October Down syndrome Weekend Blog Hop is raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!

 

Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.

 

For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.

 

For Those of You that Like Prompts:

Ellen Stumbo has shared optional prompts for the hops. They are:

Oct 5 – 7:  A defining moment
Oct 12-14: If I knew then what I know now
Oct 19-21: Celebrating milestones
Oct 26-28:  What I look forward to

These (wonderful) prompts are entirely optional: follow them if you'd like.

 

Blog Hop Button:

Share this Hop! The more the merrier!


 

Blog Hop Code:

There will be a link "get code" at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

 

From NDSS:

The National Down syndrome Society has created a Blogger Guide – which includes links to a preferred language guide, resources and lots of suggestions for doing more – and springboarding to greater action. Check it out HERE.

 

And 31-for-21:

31 for 21 is a daily blogging endeavor to raise awareness about Down syndrome. To participate and/or learn more, please visit 31-for-21 at Big Blueberry Eyes

 

THANK YOU!

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Other relevant links:

Down syndrome Blogs

T 21 Writers Alliance – The International Alliance of Writers for Down syndrome

facebook page

informal facebook group page

 

 

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