Wrapping Loose Ends: "Odd Socks", NDSS, IDSC, Down Syndrome Blogs and Some Cute Photos

Sooooooo…. the World Down Syndrome Day Committee changed their campaign from “Odd Socks” to um, “Lots of Socks”.

I am frankly perplexed and mystified by this committee’s connection between socks and Down syndrome.

I mean, really.

 

She doesn't get it  either
She doesn’t get it either

What does a a cloth foot garment have in common with the presence of an extra chromosome?

 

I really wish they’d just keep the socks in a drawer where they belong and focus on something simple and classy.

 

Like 3-21.

 

Just 3-21.

 

That’s easy, it means something – both the date and the fact that it’s 3 copies of a the 21st chromosome (= Down syndrome!). It’s interesting.

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I like these t-shirts from Rhyme and Reason – great design. If they made that bold 3-21 one plump-mama compatible (with a girl-cut and v neck), I might actually wear it every day. As it is, it’s  the type of t-shirt that makes people curious (in a good way), I think – which is part of what raising awareness is about. Right? Right.

 

A percentage of each t-shirt sale goes to NDSS which brings me to my question about Nella’s Triple Crown and where the money goes. I wrote to the NDSS and asked if they had something that breaks it down a little better than what’s on their site (I included a link); they wrote back with the same link and said if I wanted more information, I could ask for it [insert facepalm]. I suppose I could be writing back to them now instead of writing this post, and get into it with them but I don’t feel like it. If they didn’t care to read my email thoroughly enough the first round, that says something to me.

 

Their graphs are pretty vague and general and don’t say much about a lot.

I think the odds are good that they are not outright doing anything bad with the money

– frankly, there isn’t enough to be building golden staff toilets or stashing it in the Caymans or whatever.

 

The odds are also good that the money can be spent a lot more thoughtfully and productively.

 

I can safely make this assumption as there is a great deal of community dissatisfaction with the NDSS and because we don’t actually see a lot from them in the way of results.When uproars happen like they did in the case of the Today Show and the whole “we’re safe” thing – where is the NDSS? When some celebrity or another goes and insults people with Down syndrome, where is the NDSS? I’m asking this because it’s all over facebook – I’m only giving voice to what I hear over there and what I see in action.

 

The IDSC is a great comparison: these guys bust ass on a dime! They have virtually no budget – it’s purely volunteer – and they are all over the place!

 

Ra!
Ra!

I wish the NDSS were even a fraction as active and visible.

 

I think for those of us that would like to see that – or for specific money being used in ways we think are valuable, we need to be writing and telling them how we’d like to see money being used. We help raise money too, after all – directly and indirectly. We do have a say. So, if you want or think more money needs to be spent in research, WRITE. And be public about it – the more of us that are aware of what each other is doing, and the more in synch we are, the more results we are sure to have.

That’s part of raising awareness too, right? Right.

Here’s how to make your opinion known to the NDSS:

facebook: https://www.facebook.com/NationalDownSyndromeSociety

twitter: https://twitter.com/NDSS

email: info@ndss.org

phone: 800-221-4602

 

…and while you are at it, can you ask them to PLEASE put a link up to Down syndrome Blogs?

I’d really love to see a link to Down syndrome Blogs on their site so that people – especially new parents – can hear the voices of many, find families to connect with on their own. When I asked the NDSS if they could PLEASE put the link up, they said they “didn’t have room for it”. But come on. It’s a small link. Maybe they can be convinced.

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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.
Meriah

@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
A comprehensive collection of resources for new parents of children with Down syndrome - https://t.co/WfzGfpmWm6 - 2 days ago
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12 Comments

  • love everything you’ve said! Can you imagine if NDSS followed the lead of UK/Australia and advocated for inclusion on a national level? I really don’t see what NDSS has done for us

  • Older comment– Moxie and her tricycle– best photos of the week!!! Made me giggle!!!
    Next– the socks for World Down Syndrome Day? What in the world??????? I just doesn’t even make the tiniest bit of logical sense in any way. 3:21– enough said.
    Next- NDSS. Oh, NDSS. Let’s just say that Matt Lauer had said to the couple, “Let’s get to the good news.” Then let’s just say the couple said, “We’re safe, the baby is not homosexual.” Hmmmm. I wonder if GLAAD would have been ALL OVER that. Instead, we are stuck with the NDSS, a mostly silent and mostly non-active “advocacy” organization. Drives me INSANE! I love, love, love, love IDSC, though. Thanks for raising this again. Will be emailing them to ask them to please add the DS Blogs to the list. It’s kind of the least we can do. We all do their work for them trying to advocate and educate– you would think they would appreciate the awareness we create. Xoxoxoxoxo Jen

  • I don’t get the socks thing. Maybe they already had all this sock campaign stuff and that is why it is still sock related. Still lots of socks is strange and makes no sense but it is better than odd socks.

    Yeah, where does the money go? When we do our annual Buddy Walk, I list the various programs through our local organization that are benefiting. In fact, they have it written in their pamphlet. Now I realize that DSACT is a lot smaller than NDSS, but I cannot imagine you are the first person to ask this question. I laughed out loud at their response to you because it reminded me of a recent email “conversation” with the Board of Nursing. What is it with these entities and vagueness?

    Love IDSC! I work with Stop Disability Slurs which is purely volunteer. We have written more letters/blogs, etc than NDSS. Anyway, love IDSC.

  • I have been working with Sara Weir at the NDSS Ambassador program she started. Because of her tireless effort,we are pushing hard to get the ABLE Act passed. Are you aware of this important act? Have you called you Senators and Congress person and requested that they support it? We need active community support and voices to get it passed.

    • Yes, Brad, I am very aware of it and also aware of it’s import. I’m wondering if that is the only thing that NDSS is working on? Is this national-level organization only capable of focusing on one thing?

      I’m not really expecting a full answer from you and I don’t mean this post as an attack on the NDSS. Rather, it’s an expressed hope that they step up in some other important areas

      • Meriah –

        I don’t think this is a fair assessment. I count 14 staff members on their website. I am guessing you have more than 13 faithful followers on your site. I challenge you to collectively do the following:

        1) Create a PR campaign that generates over 500k national participants and as much local media buzz as the Buddy Walks (all while funneling most of that money to all the local organizations that host them).

        2) Support and keep tally on the hundreds of local organizations at a national level and work with them to share best practices, resources, etc.

        3) Create a Buddy Walk on Washington to generate governmental awareness, and develop relationships with members of Congress, build national awareness and create arrangements and plants so that people will fly in to support this and have an agenda, place to stay, and their Congress-person’s office is aware and able to listen to them once they arrive.

        4) Respond to various political and social issues as they arise in an adhoc manner.

        5) Attempt to rally our diverse constituency without being divisive or stepping on too many 3rd rails of personal politics

        6) Manage a multi-channel marketing campaign that involves FB, Twitter, a Website, monthly newsletters of substance, a My Great Story campaign, and engagement on broad based media by reaching out to televisions stations and news outlets.

        7) Advocate for greater inclusion in Education, Employment and Housing while fighting off cuts to Safety Net programs – and not at the general policy level, but by crawling through the minutia of all of the various bills and acts being proposed and debated each day by hundreds of legislative members and thousands of staffers.

        Again, I don’t think they are perfect. I was concerned on their stance on Prenatal Testing and how Dr Skotko was removed from their BOD. My response was simple – I called and spoke to Sara and gave her my point of view and asked for clarification.

        She was thankful because of all the people who were complaining on the net – I was the only person to pick up the phone and provide feedback. I would recommend trying it – I bet you will get a lot more traction.

        Brad

        • Brad, as I said in the post, I DID contact them, and included a link. They responded, referring me to the SAME LINK…
          I’m not terribly impressed with what I’ve seen from them. I don’t think there is wrongdoing going on; I’m just not impressed.

  • Meriah,

    Thanks for pushing this issue…I am really hacked that the organization that advocates for inclusion of Down’s syndrome children wants to exclude Down’s syndrome bloggers! No room? Sheesh…that’s a nonsense answer. You and a couple bloggers could drive enough traffic to that site alone to justify the 250 square pixels they would sacrifice.

    Here’s why I’m hacked. When Little Bird was diagnosed at birth, my wife and I didn’t know where to turn. The info on the big DS websites was overwhelming, cold, and impersonal. In the blogging community I found moms and dads with children with DS that had real experience…and real-time help for those of us just starting. The guilds and associations wanted our dues, the bloggers wanted our babies happy.

    Now, I’ve got nothing against the big guilds and associations…they are crucial to Little Birds development and inclusion. But, since its not just about Little Bird, but all the DS babies that come next, I have started a boycott of NDSS until they do two things: release financials and link to DS Bloggers.

    You can read about in on my blog. Here’s the shortlink, hope u don’t mind:

    http://wp.me/p37gLn-6U

    I not asking anyone to join me unless they feel compelled to do so, since i know NDSS does good things, but I feel that what NDSS is doing re transparency and inclusion of the DS Blogroll is just not right.

    Thanks for keeping us up to date on NDSS, and give that little one of yours a hug from Little Bird….adorable!

    Peace,
    LBD

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