Tag Archives | advocacy


I’m sad. Recently, an exchange of words took place on Facebook, twitter, blogs, and large, national sites like The Mighty and Huffington Post. I’m sad because this is an opportunity missed. See, people with disabilities have been harnessing the power of the internet for a long time now in hopes of getting their own words […]

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Down Syndrome Awareness 2015

October is Down Syndrome Awareness Month. Last year, I wrote a post with things to be aware of beyond Down syndrome itself. You can read it here. I read through the post again and went to do some fact checking before merely re-using the same post. I was hoping to need to do a major […]

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To Be Continued

Disclaimer: Though we are choosing to advocate against a self-contained placement for Rowenna at this time, this is not a judgment on anyone who has chosen that for their child. We simply do not feel it is an appropriate placement for our daughter at this time based both on our observations at home and the […]

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Hear that? It’s the sound of my balloon bursting. Until now, we have had an amicable relationship with our school district. We felt very in sync with their suggestions for Rowenna, and we loved her placements for the last two years. We know many children who have various diagnoses, and many of them did an […]

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Open Letter to NDSC

On October 16, you sent an email to your membership asking “Are We ‘Aware’ Enough Already?” and provided a somewhat flip answer to the question. I’m not sure if your email was in response to some of the excellent blog posts written about the need to move beyond awareness (at least one of which has […]

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Down Syndrome Awareness

October is Down Syndrome Awareness Month. So, let’s get that bit out of the way: Down syndrome is a thing, my oldest child has it, so…be aware. This month, social media will be flooded with extra pictures of people with Ds and many will choose to share facts and figures. That is good, but I’m […]

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A Little Bit about NDSAN

In 1975, Robin and David Steele visited a group home for children with disabilities and met 3 year old Martha Ann. At the time, they knew little about the adoption process, and even less about Down syndrome, but they knew Martha would one day be part of their family. Over time, the couple eventually adopted […]

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Blog Hop: A Truth, A Tip, and a Picture

Blog hop time! Hopping with the wonderful bloggers at the International Alliance of Writers for Down Syndrome. We’re offering up a truth, a tip, and a picture. Scroll down to the bottom of the screen to see the other writers participating in the hop! A Truth: There is a need – a deep need – […]

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Uncomfortable Truths

Three months ago today, a man died. His name is Robert Ethan Saylor (“Ethan”) and he died over a movie ticket. After watching a movie along with his personal care assistant (PCA), he remained inside the building while his PCA went to get the car. Mr. Saylor went back inside the theater to watch another […]

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No Ordinary Boy

A friend sent me her copy of No Ordinary Boy, a non-fiction personal narrative about a mother raising a child with a complex disability. It’s a slim volume, so while Rowenna took a long nap, I settled down to read. It’s a beautiful book – heart-wrenching without being overly sentimental, spare prose offers you a […]

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