Our story: these hands. Guest Post by Mark W. Leach
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Our story: these hands. Guest Post by Mark W. Leach

The hands of people can tell you many things. The hands of those with Down syndrome are no different. Beyond the insight provided from palm reading, noticing a person’s hands can tell you a bit of their story: dirt under the fingernails of someone who works in the garden; calloused palms of someone who pulls ropes…

“Special” is the new “Retard”

“Special” is the new “Retard”

[vc_row][vc_column][vc_column_text]R-Word Awareness Day highlights the mission of many allies and advocates of people with developmental disabilities in “spreading the word to end the word.” And by that, it is meant to end the use of the word, “retard.” I hosted blog hops for two years in a row. There are many, many outstanding posts on the page, and…

Walk With Me
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Walk With Me

4 years ago, I wrote a post called The Choice to Suffer. In it, I was talking about how caring for an elderly man in the advanced stages of Alzheimer’s helped me to heal. I was about as wounded as a soul can get when I met him, and he taught me how to hold hands…

Some Thoughts on Senate Bill 334, Abortion & Disability
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Some Thoughts on Senate Bill 334, Abortion & Disability

A new proposal by a state senator seeks to make it criminal to abort a fetus on the basis of its disability or gender. Since women rarely abort in the United States on the basis of gender, it appears (as David Perry aptly stated), as if gender is simply a smokescreen for the real Trojan…

Dolls with Down syndrome
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Dolls with Down syndrome

Note: this is a sponsored post. All opinions are my own. ___________ When I was a kid I loved Barbie. Oh, secretly of course, I knew loving that mainstream bit of blonde freakishness with her otherworldly proportions, built-in high heeled feet and rock-hard (nipple-less!) bosoms would not win admiration for me from my parents, but…yeah. I loved…

Down syndrome Acceptance Month

Down syndrome Acceptance Month

October is Down syndrome Awareness Month here in the United States. I’m personally not out to promote awareness anymore, because we are there already. We are aware. We are aware that people with Down syndrome are the same as people without: deserving of equal rights, opportunities and privileges. We are aware of what features associated…

What the Down syndrome Community and Ostriches Have in Common…

What the Down syndrome Community and Ostriches Have in Common…

[vc_row][vc_column][vc_column_text]My favorite lil’ online guy over there, Noah’s Dad, was posting in a Down syndrome Educational Support group on Facebook, trying to get people over to some post of his about information for parents who have received a prenatal diagnosis of Down syndrome. When asked why he was reinventing the wheel with this when Lettercase…

Disciplining My Daughter with Down syndrome
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Disciplining My Daughter with Down syndrome

Somehow, somewhere along the line, I stopped disciplining Moxie the same as I discipline Micah, or rather even, the same as I disciplined Micah when he was Moxie’s age. And I don’t know what happened exactly to change that. I suspect that her  inexhaustible appetite for adventure and mischief  had something to do with it – she…

An Open Letter to Parents of Kids with “Special Needs”

An Open Letter to Parents of Kids with “Special Needs”

Dear Friend, This letter isn’t about appreciating your child. It’s not about loving your child, it’s not about protecting your child or about fighting for access for your child.  I know you do all of that already. This is also not about pointing fingers or trying to shame or make you feel bad.  You don’t…

An Open Letter to Parents of Kids with Special Needs

Dear Friend, This letter isn’t about appreciating your child. It’s not about loving your child, it’s not about protecting your child or about fighting for access for your child.  I know you do all of that already. This is also not about pointing fingers or trying to shame or make you feel bad.  You don’t…

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3.21

Today is Spring Equinox. It’s Persian Naw Ruz and Baha’i New Year – it’s the end of the month-long Baha’i annual Fast. Today is a day of celebration across cultural and religious lines, no more so than in the Down syndrome community. For those of us who love someone with a little extra, it really…

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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. ****  Message from Blurb, best Book-making company EVER: Blurb lets you make books about anything that interests you. Want…

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My 3 on the 21st

This is part of the monthly Community Blog Hop, 3 on the 21st. A truth, a tip and a photo. Read more about it here. And join yourself! *** One truth: Disability isn’t a big deal. Disability is a natural part of the human experience – it’s a chance and an opportunity to explore the world…

(3) on the 21: A Blog Hop

This monthly blog hop is a community project. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (below). (3): One truth (about Down syndrome/our…

The National Down syndrome Adoption Network Needs YOU! – Guest Post by Melissa Stoltz

This is an unbelievable post on some levels – it is incredible that such a small, underfunded organization does so much. It’s incredible that most of us don’t know about it. It’s incredible that the national organizations supporting Down syndrome do not support the mighty work that these women do. It’s incredible that this is…

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…About That Bit On “Learning to Go Slower” Because You Have a Child With Down syndrome…

Before I had Moxie – when I was searching online for something positive about Down syndrome, something that I could sink into with a sigh of relief, “oh, it’s going to be okay”, I came upon reasons why parents were grateful that they have a child with Down syndrome. Learning to slow down was often…

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Up Syndrome by Megan Abner, a Woman with Down syndrome

I’ve written a bit about how I’d love to have more adults with Down syndrome speaking and writing of their life experience, views on therapy and disability – much like the Autistics do within the Autism Community. I mean, we can sit around and talk about Down syndrome all day long but we’ll never know…

For the Record

There was a big ole comment/post/flurry storm over that last post, On the Pedestal. It’s pretty clear that some of my words have (intentionally or not) been twisted, and some other things are just misunderstandings. And others  – well,  others are just products of my crass, inarticulate, shoot-from-the-hip and raised abroad self. So, for the…

On the Pedestal: the Down syndrome Community, Stereotypes and Glow-Spins

As you read this post, please be aware that this is a muddle through a thought process that has evolved. The second part to this post is HERE.  ***************** There was a couple that visited our local Down syndrome Connection. The woman was pregnant, they had a 2 year old daughter who was also present….

Top 5 Reasons I Wish I Was at the NDSC Conference
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Top 5 Reasons I Wish I Was at the NDSC Conference

The NDSC Conference is happening right this very minute, over in Denver (which I can’t think of without getting John Denver on auto-looping-ear-worm-play in my head) and boy do I want to be there right now! These are my top 5 reasons why, listed in random order of importance: 1. People: EVERY-BODY except Melissa is…

Down Syndrome: More Alike Than Different..and Yet
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Down Syndrome: More Alike Than Different..and Yet

I understand the need – necessity even – of campaigns like ‘More Alike Than Different‘. We want others to see our kids as we do; bright and beautiful, a truth perhaps for all  mothers. In the case of mothers of kids with Down syndrome, the urge is perhaps stronger as we know our kid is…

I Never Knew I Wanted a Child with Down syndrome Until I Had One
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I Never Knew I Wanted a Child with Down syndrome Until I Had One

What feels like a million years ago, I was on the Baby Center Down syndrome Board. I was immersing myself in the questions, the comments, the endless threads. The talk, the chatter, the crying, the heartache. The “brag”s. One signature struck me in particular, “I never knew I wanted a child with Down syndrome until…

A Down syndrome Prenatal Diagnosis, Sevenly and YOU

A Down syndrome Prenatal Diagnosis, Sevenly and YOU

The table that we sat at was round, made of wood. The doctor had a New Jersey accent that would slice hard cheese, his face was weathered, lined with the wrinkles that come from age and golfing without adequate sunscreen.   “She’ll be a burden for life,” he said, “do you have any other kids?”…

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"It's Not that Complicated, Is It" – by the Unknown Contributor

[repost from the Unknown Contributor – because she said it perfectly] It’s Not that Complicated, Is It? The Ethan Saylor case has dominated my mind, my heart, and my Facebook feed for a few weeks now. I have read just about everything news agencies, bloggers, and organizations have published on it. (Is your Facebook feed…

He Deserved to Die: He Had the Temerity to Be Born with Down Syndrome

When a young man with Down syndrome is held down by 3 off duty police officers inside a movie theatre over his refusal to purchase a second ticket and he dies because of their actions, what does this say? When the largest national organization for Down syndrome meets with the Department of Justice and comes…

Down syndrome is the Hoodie in the Room: "Robert Ethan Saylor, Disabled Man Who Died In Custody, Had Heart Problem"

Down syndrome is the Hoodie in the Room: "Robert Ethan Saylor, Disabled Man Who Died In Custody, Had Heart Problem"

The recent HuffPo article on the Robert Saylor case really pissed me off. Did you read it? Robert Ethan Saylor, Disabled Man Who Died In Custody, Had Heart Problem. Let me get this straight: a young black man in BART station in Oakland (the very one in which my husband works, I might add) gets…

Down syndrome is the Hoodie in the Room: “Robert Ethan Saylor, Disabled Man Who Died In Custody, Had Heart Problem”

The recent HuffPo article on the Robert Saylor case really pissed me off. Did you read it? Robert Ethan Saylor, Disabled Man Who Died In Custody, Had Heart Problem. Let me get this straight: a young black man in BART station in Oakland (the very one in which my husband works, I might add) gets…

3 for 21: A Bite Sized Blog Hop for Down Syndrome and Change
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3 for 21: A Bite Sized Blog Hop for Down Syndrome and Change

Returning from the bathroom the other day, I saw that My One True Darling Man had given baby Mack some mashed up banana in my absence. This was it; his first bite of food – my last baby eating something for the very first time. An event of real significance and I was not there…

… the Post in Which I am a Defenseless Turtle at the IEP/Transition Meeting
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… the Post in Which I am a Defenseless Turtle at the IEP/Transition Meeting

So I’m sitting here with a sleeping Mac in my lap. I’m crying over him, big fat tears plopping all over his legs. I’m trying to figure out why exactly I’m so upset. The administrator’s parting comment over Micah reading Rumpelstiltskin (the book he brought along to read on his own during the meeting) rings…

Kelle Hampton and the Down syndrome Unicorn Effect
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Kelle Hampton and the Down syndrome Unicorn Effect

By now most of the internet knows that blogger Kelle Hampton caught some major flack for posting a full frontal of her daughter, Nella on instagram. If you don’t know about it yet, here’s an article from Today. While I personally think a full frontal of a child, any child, crosses the line, I do…

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The Raw Feeling of Truth, A Guest Post and Slice of Life

I’m feeling pretty vulnerable today. I am guest posting on Amy Julia Becker’s blog, Thin Places. She is running a series by women regarding their choices in prenatal testing – my contribution is I Regretted My Amnio. The post was an honest one and as such, I feel exposed and kind of raw – like…

An Open Letter to the World Down Syndrome Day Committee About The “Odd Socks” Campaign

Dear World Down Syndrome Day Committee,   Last year was the first year that March 21st was officially recognized as World Down syndrome Day. March 21st. 3/21, 3 copies of the 21st chromosome: Down syndrome. How clever! I loved that. It made me glow with satisfaction.   I wish I could say I feel the…

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"Nella's Triple Crown" and Is It Wrong to Ask Where the Money Goes?

I have no doubt that this post is going to make me seem like a great queen bitch, but yesterday was Martin Luther King Jr Day, and as he so famously said, “our lives begin to be over the day the we are silent about things that matter.”   One thing that matters a lot…

Telling a 4 Year Old That His Sister Has Down Syndrome

The other day, Micah was thinking about Mac and what would be going on when he would be three years old. “Well, when Mac is three years old, he’ll be starting to talk, just like Moxie,” he said with a confident nod, his little voice full of assurance. I stopped for a moment, wondering if…