The Third Quarter – Is This Embarrassing You?


Tomorrow, October 27, will mark THREE MONTHS since I have talked to my sister Amanda. This will be the longest span of time in our lives that we have ever gone without communicating.

The court system is hopelessly apathetic. I have contacted every resource I can come up with who might have an interest in advocating for a 46 year old woman with Down syndrome, who is not allowed to ask for what she wants.

The irony is that her “keepers” — her guardian and his wife and others who support this form of torture — either don’t understand or don’t care that they are chipping away at her psyche.

The reasons don’t matter. The excuses began last summer. First they blamed Amanda, saying she has  “bad habits”. When they couldn’t sell that, they shifted the blame to me with preposterous accusations, or simply avoided any explanation.

The guardian’s feelings are hurt, I am sure, because of my very outspoken attack on his mistreatment of our sister. He is encouraged by a slew of other troublemakers. But the bottom line is, Amanda is suffering due to this agenda.

Everyone knows what he is doing to her is wrong. But no one will say a thing.

No one cares.

No one wants to make waves.

Meanwhile I keep on clanging that bell, much to the chagrin of friends and relatives who wish I would just shut up and go away.

How could I live with myself then?

If I am embarrassing you, if you think this cause isn’t a significant one, it’s time for you to reevaluate your standards.

Those who know me especially should think about this. I am someone who does not like conflict. I have maintained a strict policy of non-judgement throughout my entire life. I have been easygoing to a fault — usually too much so. I have spent decades looking after Amanda, never having any problems getting her to do as asked, and having a great time with her. Until they started targeting her, I was silent about other siblings. I like the quiet. I am happiest in the woods, left alone with my animals. I am not, by nature, an aggressive person, let alone the roaring, ranting, furious bitch that this situation has rendered.

Uhmm… When someone executes an extreme behavior change, it could mean that something is wrong here. Ya think?

People with Down syndrome harbor deep attachments and depend heavily on rituals. 1/4 of all people with Ds will develop dementia as they age. This condition can be hastened through the forced separation from loved ones, through the breaking apart of their treasured habits, through the crushing of their value system.

Amanda is not going to fight this. She won’t say a word. If she is not allowed to talk about me, she won’t. If she is not allowed to write me, she won’t. If she is not allowed to call me, she won’t.

But her heart is still a living, beating entity. And I live there.

She will tamp down her spirit, because it is expected. She will do the church thing. She will have fun. She will laugh. But inside, she will be suffering, deeply, and quietly, in a way that no one will be able to see.

In short, Ted forcing us apart, to cater to his own spite and desire for revenge, or cloying to the hateful agenda of others, could be making Amanda very ill.

Amanda may seem fine, but nobody really knows. Do they?

She SEEMS fine.

But if you can’t be sure, is it worth the risk of doing permanent damage?

There is no way you can wipe someone out of her life and expect it not to affect her.

Note: Mental Health Issues and Down Syndrome:

Older adults present with increased vulnerability to:

  • Generalized anxiety
  • Depression, social withdrawal, loss of interest, and diminished self-care
  • Regression with decline in cognitive and social skills
  • Dementia

All these changes in behavior often seem to occur as a reaction to (or triggered by) a psychosocial or environmental stressor, e.g., illness in, separation from, or loss, of a key attachment figure.

This is pretty much the epitome of selfishness.

But all that matters is he gets to make his point, right? Oh, Lord, God, Guardian.


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!
This entry was posted in abuse, amanda, down syndrome, empathy and tagged , , . Bookmark the permalink.

2 Responses to The Third Quarter – Is This Embarrassing You?

  1. Kerry J says:

    It makes me heartsick to read this and know the pain you are going through. I wish Ted would come to a place of compassion (what a great Christian – not!). Love you heaps.


    • I think the rage is crowding out any sense of pain. Nothing makes me angrier than witnessing bullies in action. I wish Ted would go back to his old self. He was a wonderful person as an atheist. I hope Amanda is able to have good days regardless of the crazy.


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