[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…
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…
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…
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…
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…
[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…
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…
I’m coming to the point of thinking that Moxie may never be a person who has many words. That she may never be a chatterbox who goes off on verbal tangets, may never talk anyone’s head off. She might never put a string of words together on the lace of a sentence. Moxie is…
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…
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…
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…
You know how it is when you become friends with the characters in a book? When they have made their way into your heart and mind and you look forward to your time with them every day and you sadly see the remaining pages of their story growing slimmer and wish it weren’t so? That…
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…
Having been a minority for most of my life, I am the gal you want to have around if you are looking to connect with someone with whom I have a minority connection with. I have absolutely no shyness, no shame: I will pounce on ANYONE that I see walking in the street with a…
I came upon Moxie the other day as she was sitting by herself. The ‘Big, Little’ book was open on her lap, her legs outstretched. She was signing the pictures, signing “tree” then signing ‘flower”, turning the page (with a flourish and slam) and signing on. I thought my heart was going to bust out…
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…
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…
I thought this was a joke – and a pretty stupid and poorly made one at that, if I can speak frankly. But the SOCKS ARE BACK?? Are you freaking kidding me? World Down syndrome Day is again adopting a SOCKS theme?!! Okay, they got rid of the “Odd Socks” bit of flat out offensiveness…
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…
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…
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…
I really appreciate the outpouring of support that came my way after some of the more vitriolic comments from my post regarding stereotypes and Down syndrome. I am grateful for those of you that have been friends with me – virtually or in person – real and true enough to hang in there and work…
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…
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….
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…
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…
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…
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?”…
I think my story in and of itself is a plump one. Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up…
[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…
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…
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…
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…
Robert Saylor was a young man with Down syndrome. He was held down by 3 off duty cops because he refused to leave the movie theater and didn’t have a second ticket for the second time he wanted to watch a movie. He was held down, handcuffed three times and died from being suffocated. They…
I woke up on the nauseous side of the bed this morning, World Down Syndrome Day. Micah came in, hacking and heaving, Mack was drenched in snot and Moxie is not only sick but is on some kick where she pushes me away and wants nothing to do with me. I want to tell her…
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…
Monica and David: the story of a couple with Down syndrome who get married and begin their life together. It was originally aired a couple of years ago but Netflix just picked it up, which means I’m watching it for the first time. It really had me bawling like a small child through much of…
I know someone who still says, “nigger”. That word that is so offensive that I hesitate to even type it, let alone say it. But he does, my Grandpa Knobby. He says it when he feels like saying it. He says it because he thinks it’s funny, he says it because he’s from Texas. He’s…
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…
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…
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…
Most all of you contributed last year to the Leukemia and Lymphoma Society last year, as a part of the run that I was doing in honor of Oliver. Do you remember that? I found out that I was pregnant shortly after committing myself to the endeavor and it was hell on earth a challenge…
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…
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…
I. The beginning of my pregnancy with Moxie feels jumbled, as I recollect it now, some 3 years later. It’s a blur of happenings, events moving swiftly upon each other like quick waves that peak in a tsunami. The blur may be due to the events themselves or may be to the way my mind…
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…
You know it and I know it: Kelle Hampton is hugely popular. She writes marvelous fluff on her blog, Enjoying the Small Things. I think she is an adroit blogger, able to weave remarkable bits of fippery in and around drop-dead awesome photos. The result? A top-notch blog. A top-notch and popular blogger does…
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…
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…
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…