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The Road We've Shared

The Road We've Shared

The online community by and for parents and caregivers of adults who have Down syndrome

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Author: Stephanie

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Research

New Study: Detecting sleep apnea in adults with Down syndrome using WatchPAT

By Stephanie
On July 19, 2022

A new study from the Netherlands looks at detecting sleep apnea using a home sleeping testing system. The WatchPAT system uses ” a wrist-worn watch, a finger probe and a snoring sensor.” The report discusses how important it is to detect and treat sleep…

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#sleep apnea
Unwanted: How a Mother Learned to Turn Shame, Grief, and Fear into Purpose, Passion, and Empowerment – A to Z Blogging Challenge
A to Z Blogging Challenge 2022

Unwanted: How a Mother Learned to Turn Shame, Grief, and Fear into Purpose, Passion, and Empowerment – A to Z Blogging Challenge

By Stephanie
On April 25, 2022April 27, 2022

Linda Smith has an interesting story that includes behind-the-scenes of Las Vegas and philanthropy at a major level. Unwanted follows her from poverty and abuse as a child to disability advocate as an adult.  You can listen to a podcast she did…

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The Eternal Son – A to Z Blogging Challenge
A to Z Blogging Challenge 2022

The Eternal Son – A to Z Blogging Challenge

By Stephanie
On April 23, 2022April 27, 2022

Eternal Son offers American readers a rare insight into life with Down syndrome in Brazil. The author, CRISTOVÃO TEZZA, is one of Brazil’s foremost contemporary novelists, and the book won multiple awards.  In this multi-award-winning autobiographical novel, Cristovão Tezza draws readers into…

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Shut Away: When Down Syndrome Was a Life Sentence – A to Z Blogging Challenge
A to Z Blogging Challenge 2022

Shut Away: When Down Syndrome Was a Life Sentence – A to Z Blogging Challenge

By Stephanie
On April 22, 2022April 27, 2022

Written from a sibling’s perspective Shut Away gives a glimpse into institutional life. “How many brothers and sisters do you have?” It was one of the first questions kids asked each other when Catherine McKercher was a child. She never knew how…

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#institutions
Reasons to Smile: Celebrating People Living with Down Syndrome – A to Z Blogging Challenge
A to Z Blogging Challenge 2022

Reasons to Smile: Celebrating People Living with Down Syndrome – A to Z Blogging Challenge

By Stephanie
On April 21, 2022April 20, 2022

Reasons to Smile is one of my favorites for two reasons: 1) the beautiful photos that accompany each short story, and 2) that not one, but two of my favorite guys are featured in it. [Shoutout to two of the original gang…

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Quandary –  Memoirs of a Mongol without a Pony – A to Z Blogging Challenge
A to Z Blogging Challenge 2022

Quandary – Memoirs of a Mongol without a Pony – A to Z Blogging Challenge

By Stephanie
On April 20, 2022April 20, 2022

I chose this title, Memoirs of a Mongol without a Pony, to represent the letter Q for quandary because of the title and cover photo.  Mongol is an outdated term considered offensive when used to describe Down syndrome: “The condition was originally…

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Portrait of the Artist’s Mother: Dignity, Creativity and Disability – A to Z Blogging Challenge
A to Z Blogging Challenge 2022

Portrait of the Artist’s Mother: Dignity, Creativity and Disability – A to Z Blogging Challenge

By Stephanie
On April 19, 2022April 20, 2022

“Portrait of the Artist’s Mother is a memoir and an examination of the politics of disability. The author describes the pressure from medical institutions to undergo screening during pregnancy and assumptions that a child with Trisomy 21 should not live, even though people…

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One Day at a Time: Living With Down Syndrome – A to Z Blogging Challenge
A to Z Blogging Challenge 2022

One Day at a Time: Living With Down Syndrome – A to Z Blogging Challenge

By Stephanie
On April 18, 2022April 20, 2022

This is a short, 42 page read with religious overtones.  (Many of the memoirs that cover Down syndrome mention religion or religious beliefs – but that’s another post.) “One Day at a Time explores and explains the personal life of a mother…

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Nothing Special: The Mostly True, Sometimes Funny Tales of Two Sisters – A to Z Blogging Challenge
A to Z Blogging Challenge 2022

Nothing Special: The Mostly True, Sometimes Funny Tales of Two Sisters – A to Z Blogging Challenge

By Stephanie
On April 16, 2022April 20, 2022

The job of sibling is sometimes difficult, regardless of what labels are applied to members of the family.  This perspective, when told honestly, can give us important information of the status quo and how to help not just the individual with Down…

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My Life with Mosaic Down Syndrome – A to Z Blogging Challenge
A to Z Blogging Challenge 2022 Mosaic Down Syndrome

My Life with Mosaic Down Syndrome – A to Z Blogging Challenge

By Stephanie
On April 15, 2022April 20, 2022

My Life with Mosaic Down Syndrome by Robyn D. Batezel gives readers a glimpse into a type of Down syndrome that is rare and not very well understood.  Facts about Mosaic Down Syndrome from the International Mosaic Down syndrome Association. Mosaic Down…

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#Mosaic Down Syndrome

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  • New Study: Detecting sleep apnea in adults with Down syndrome using WatchPAT
  • Unwanted: How a Mother Learned to Turn Shame, Grief, and Fear into Purpose, Passion, and Empowerment – A to Z Blogging Challenge
  • The Eternal Son – A to Z Blogging Challenge
  • Shut Away: When Down Syndrome Was a Life Sentence – A to Z Blogging Challenge
  • Reasons to Smile: Celebrating People Living with Down Syndrome – A to Z Blogging Challenge

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  • Home
  • About Us
    • Strategic Planning
  • Justice For Ethan
    • The Civil Case – A Summary
    • Press Release – Ethan Saylor Memorial Film Festival
    • Ethan’s Law – The Movie
    • A Brief Summary of the Story
  • Blog
  • Count Us In!
    • Research: Why Does it Matter to You and Your Families?
  • Research Corner
    • Stress and Depression Linked to Onset of Cognitive Decline and Alzheimer’s Disease in People with Down Syndrome
    • Alzheimer’s Disease – Dr. Brian Chicoine
    • Health & Aging with Down syndrome
    • Vaccine targeting AD with Down syndrome
    • Debate Over Antidementia Drugs
    • All about the Down syndrome registry
  • Down Syndrome in Children’s Literature
    • Children’s Library