Tag Archives: guardian

Down Syndrome – And The Chokehold of Guardianship

In what amounts to the most heartbreaking scene I have ever witnessed, Amanda tearfully complied. This 48 year old woman with Down syndrome had to endure the public humiliation of being treated like a child. But she did it with dignity. She got up, walked out of the restaurant with Ted and his wife, and meanwhile, I restrained myself from punching anyone in the throat. Continue reading

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But She’s Got Down Syndrome, Right?

I just got off the phone with a lawyer in Arizona. We talked at length about Amanda’s case. I explained that Amanda has Down syndrome and she wants to move back to Michigan and live with me. I told him … Continue reading

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The Audacity of My Sister, Amanda

My youngest sister Amanda has Down syndrome and, if you have been following her story you already know she is enmeshed in a guardianship situation that is rife with controversy. Amanda is 48 years old and I am currently crowdfunding … 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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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 23 – Like a Prayer

This ethereal photo of Amanda was taken on her birthday. We had a Girl’s Day Out and she was served a free cake, complete with candle, at the restaurant. I told her to, “Make a wish!” and she immediately put … Continue reading

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Amanda Portrait – Day 18 – Profile, 2 – And Dad

On this day in 2013, my dear Dad breathed his last — and left a wake of pure chaos. Apparently, he was the one policing factor that kept family members behaving at least somewhat like human beings. Unfortunately, his kids … Continue reading

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Amanda Portrait – Day 5

It is tempting to paint Amanda as a child, because she was so pretty and photogenic. But it is important to remember that she is not a child. Today, she is shown as a woman. This is how she was … Continue reading

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