Take the Knee for Down Syndrome

I wish I could say the whole guardianship issues with my sister Amanda have been resolved thanks to the hearing in May 2017. Actually, we did make some progress. During that hearing, the judge confirmed the original order for guardianship over Amanda, who has Down syndrome. The order specifically stated that Amanda was to be allowed contact with family members through phone and internet. The judge effectively smashed a nearly year-long period of silence wherein the guardian prevented all contact between Amanda and me.

Since that time, thanks to the hearing, I call Amanda just about every week.

Unfortunately, Amanda is now living in Censorship Hell.

Imagine having someone hanging over your every word: Correcting you, stopping you, interrupting you, timing your conversation, even hitting you when you say the wrong things. You’d end up with a pretty serious case of PTSD.

Yesterday was her birthday. She turned 47 years old.


I have so many great birthday memories with Amanda. All those years, all that pizza. I wanted to call her up and talk about what happened when Mom first brought her home from the hospital, and my first glimpse of her, red-faced and dark-eyed, when I was eight years old. I wanted to talk about her first birthday when she put her face in the cake, burying her pink cheeks and gold ringlets in all that white frosting.


I knew she would appreciate other birthday stories like our tradition of yelling out our ages from the hill overlooking the bridge to Canada. Or the time we drove down the back road to Mom and Dad’s house, following a skunk that galloped right up their driveway. I stopped the car and said, “You get out first.”

We had a host of birthday memories to go over. But this day, her tone was serious.

“I’ve got some bad news for you,” she said.

“What is it?”

“One of our friends passed away.”

“Oh no! Who was it?”


Larry was a dear, nature-loving, kindhearted man who had formerly worked with the guardian in Arizona. I had met him in person and we used to hang out a bit. We hooked up on Facebook and he had been very supportive in my fight for Amanda’s rights.

“Oh no! What happened? Was he ill?”

In the middle of her reply, she was cut short by a voice in the background. “Our conversation is being interrupted,” she said. “I’m not supposed to talk about it.”

“What?! Why? Are you okay?”

“Yes,” she sighed. “I’m fine. Just…”

Her voice had changed to one of hesitancy. There was no explanation for why Larry’s death was a taboo subject, but at least it was better than the week prior when she was whacked with a paper towel tube, hard enough that she yelled, “Ouch!” That happened when she was trying to tell me about a visit to the eye doctor. Apparently she is forbidden to give me medical updates.

This is where the guardianship jumps from emotional into the realm of physical abuse.

And this is only the part I know about.

Amanda has a disability. She can’t drive a car or do math. But she is still a bright, quick witted, warm-hearted, spirited individual, an optimist at heart, who is dearly lovable. She deserves every bit of respect that any other person is entitled to. But currently she is deprived of even the most basic of human rights.


In the words of Martin Luther King Jr., “There comes a time when silence is betrayal.”

It’s tragic that Amanda has no family members besides myself who are willing to “take the knee,” and even in some small way, make their disapproval known.

But, you can.

I want you to be aware that no one is safe from this type of predation. No one. You could be in an accident today and fall into the same type of trap. Protect yourself, and others, by helping to change guardianship legislation.


Click this link for more information about how to Stop Guardian Abuse. 



About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
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