Category Archives: down syndrome

Blood Sisters Part 3 — Is Amanda’s Guardian Mean, Crazy or Just Stupid?

Falling into the category of, “Making a Hard Loss Harder Than It Has To Be”: #griefsucks #familysucksmore #guardianshipsucks #downsyndromedoesnotequalstupid Mean Sees Amanda just lost her favorite brother, Jon. (Yep, sorry Ted, he is way ahead of you. I am sure … Continue reading

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A Little Respect – Blood Sisters, Part 2

Aretha’s death is puncturing the airwaves just as her voice did. The RESPECT song is a hallmark of the #Metoo movement, and we need it now more than ever. It is the handle of a hammer for women. We will … Continue reading

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They’re Back At It — And We’re Still Blood Sisters

If this seems like something that doesn’t concern you, as my sister Amanda would say, “Think again.” Amanda has Down syndrome. How does this relate to you? Let me explain it. At some point, God willing, you will grow old. … Continue reading

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No I Won’t Back Down: The Medicaid Syndrome

For folks with disabilities, it’s a harrowing time as the GOP holds the ol’ medical insurance globe in their hands and gives it a casual spin. Gotta get this bill passed. It is more important to prove a point — … Continue reading

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Book Sale! The North Side of Down – Excerpt

The true story of two sisters, one with Down syndrome, the misfits in a large, dysfunctional family. When their father dies, the two sisters find their lives quickly unraveling. The North Side of Down is winner of the 2015 Medallion … Continue reading

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Down Syndrome, Guardianship and the Justice System

Down syndrome, formerly called “Mongolian Idiocy” was named for a physician who described the condition in the 1860’s, Dr. John Langdon Down. He wrote: The Mongolian type of idiocy occurs in more than ten per cent of the cases which … Continue reading

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When Your Guardian Acts Like a Creepy Stalker Dude

Amanda: Hellooooooo Me: Holy moly where have you been?! Do you know how long it has been since I talked with you? Amanda: I know! Me: I mean like I was wondering if they threw you in a ditch or … Continue reading

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A Letter From Amanda – After 9 Months

Finally, a real letter from Amanda arrived yesterday. It was a genuine one from her, the first in a year’s time. It was mostly about Mom and Dad and how much she misses them. I understand. I feel connected to … Continue reading

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Amanda Portrait Day 26 – Angel Bears

After Dad died, my friend Cindy gave Amanda and me a set of angel Beanie Baby bears. We named the bears Blaine and Elaine after our parents, and took them to Girl’s Day Out with us. I think Amanda looks … Continue reading

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Amanda Portrait Day 25 – Don’t You Forget About Me

This is Day 25 of posting Amanda’s portrait. I keep posting these images of her because I am so afraid she will be forgotten like others who cannot speak for themselves. I don’t want her to disappear. Today I received … Continue reading

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