Why My Sister With Down Syndrome Is Smarter Than Her “Normal” Brother

My latest installment of, “When the Witless Go To Washington” — or maybe, “You Can’t Outwit the Wittiest”? Or, “No One is Dumber Than Dan”? This actually happened.

As I explained in previous posts, our brother Jon died in August and the whole ugly clan went out to Washington to gather. My hopes to spend quality time with my sister Amanda were crushed, due to a bunch of non-reasons, the only actual one being that they are a bunch of bullies.

Dan asked Judy, Jon’s wife, to have me leave so they could visit. Obviously I didn’t know they were bringing Amanda.

DownSyndrome2

They gave her some story and she outed them.   #DownSyndromeDoesntMeanStupid

#WhichOneHasTheHandicap

#AnExtraChromosoneIsNotASignOfIgnorance   

#ExplainThatOne

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When Your Siblings Become Cartoons To Promote Human Rights

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This is my illustration of an event that happened at my brother Jon’s memorial service on August 10. My sister Amanda has Down syndrome and we are both brokenhearted over his death. We loved Jon. I wanted to take her out for pizza to give her some relief. Unfortunately, even though she is my blood sister, and she is 47 years old, and she badly wanted to go, even NEEDED to go, I had to ask permission from her guardian to do so.

This is what happened.

There are a couple of embellishments — there were no darts present. Those are figurative. Ruthie did not say that I could not take her because I did not pay. She did use those words another time. That quote is from a prior conversation that I had with Ruthie, it did not occur on that day. The rest of the quotes are verbatim.

The whole story is in a couple of prior blog posts, because I am damned mad about it.

There is no reason for this cruelty to Amanda. If you are that sick in your mind and you can’t handle being her guardian, then don’t do it.

If I get enough likes about my drawings of siblings, the Ugly Americans, I might continue doing them. It is a great way to vent. Maybe it will give them a new perspective on how they appear to others.

….Yeah, right.

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Toxic Siblings, and the Bailey Legacy

Lately, I have seriously considered permanently changing my name.

Because I am an artist and writer, I have always just kept my own name to avoid confusion, even maintaining it through an eleven-year marriage, now defunct.

There is the matter of my “blood sister,” Amanda Bailey. She is the youngest of eight siblings. She has Down syndrome and I had a good part in raising her, and I have remained a Bailey for her sake as much as my own.

But I also maintained a lot of pride due to my heritage, handed down through my father, who loved being a Bailey, which boasts of some historical significance back home. His grandfather was the second white man to settle on Drummond Island, the remote, craggy rock on the tip of the Upper Peninsula. George Warren Bailey was the island’s first in a barrage of Baileys, a prolific, rowdy, hard-drinking bunch, many red-headed, good natured, and big-hearted. They were a tight group. An aunt was like a mother, a cousin was a brother. The stories of relatives intermingled as naturally as one borne of an immediate family.

My brother Jon lived these qualities, carrying them along with him to the Pacific Northwest, buoyantly happy, loving and gentle despite his burly size.

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Mom, Judy, Dad and Jon

Unfortunately, my remaining siblings, save Amanda, have kept none of the traits forged by the Baileys, except for the “rowdy” and “hard-drinking” parts.

They have grown selfish, unbearably cruel, self-righteous and entitled. They are bloated, self-indulgent, loud, and petulant. I look at them from across an abyss, gazing over an ever-widening distance at a pack of vicious, smug and belligerent strangers I no longer recognize.

Gone from Dad’s branch is the care for the earth, respect for the space and time of others, common decency.

What is left is only greed, and a jaundiced adherence to a religion that bears no resemblance to the gospel they love to herald; at least as it was, according to Christ.

Their performance at Jon’s memorial service made me physically ill. I had to leave the building. It was after Robin, the oldest sister, arrived sweaty and gasping for air at Jon’s deathbed after lumbering up the hilly streets of Seattle.

As in other situations where someone is rendered frail, and having no choice in the matter, she had showed up, “To help.”

Jon’s wife, Judy, was mortified. Jon did not get along with Robin and, had he been conscious, would not have wanted her there.

“Don’t leave her alone in the room with him!” I screeched, when Judy called me that day.

Not to be denied, because she was on God’s mission, Robin then insinuated herself into meetings with the funeral director. She demanded an open casket. She informed everyone within earshot that she had engaged in, “a fist fight” with one of her sisters, and there was sure to be trouble at the memorial.

Luckily, the funeral director, no stranger to toxic families, immediately escorted the exhausted widow from the room for a private consultation.

Judy wanted a cremation. No open casket for her husband of 27 years. Thanks to the insightful director, Judy was able to fulfill her wishes. Otherwise, she would have folded to the Bailey Bulldozer.

However, Judy, being a normal and generous human being, made the mistake of offering free time to anyone who wanted to talk at the service.

The siblings, one by one, stood up and extolled Jon, and themselves, on and on and on, for literally hours.

Declining to impose myself into the onslaught over the poor guests, who did not know my siblings, I stayed outside. I greeted stragglers, escorting them to the door, showing them the guest book. It seemed like over the next hour, every time I entered the building, Raechel was still talking.

Besides her, there were five other siblings lined up waiting to speak.

Elderly guests eventually began to excuse themselves, finding their way to the door with their walkers and canes, tired of sitting on the hard chairs. Others who had been a part of Jon’s life and career gave up the desire to speak in the process of listening to the Michigan Baileys drone on.

And then, there was the scene in the parking lot, where Amanda’s guardian, the second oldest brother Ted, informed me that she could NOT go to the movies with Judy and me. “I don’t trust you,” he said.

Jon had not cared much for Ted. Until recently, I never really understood why.

I had my arm around Amanda. She was snugged up against me, leaning on me, and when he said those words I felt her shoulders sink, just a little. Her disappointment and grief was ebbing into me, and I was just beginning to feel the swirling of my own true rage.

Suddenly, Raechel, the second oldest sister, injected herself, mincing around behind me, and found it necessary to start grabbing me by the arm and trying to pull me away from Amanda.

Was this the start of the “fist fight” Robin was talking about? It was obvious that Amanda and I had been set up. They dangled her like the proverbial carrot — Or maybe, they were dangling me, and it was Amanda who was the target to be punished. Perhaps she had committed another sin along the way, like leaving clothes on the bathroom floor.  Whatever the psychotic rationale was for their cruelty, they knew I wouldn’t tolerate it. They all were eagerly looking forward to the inevitable confrontation.

Yanking away at my wrist, Raechel may have deserved a punch in the face, but my hands were full. Brawling is not my style, but I am no longer of a mind to put up with assault of any type.

Whatever Amanda wanted, or asked for, was of no consequence to any of them. She had just lost her brother. She had not seen me, her favorite sibling, in over two years. Who cares? Her desires, her needs, were not part of the agenda.

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Amanda at the memorial

Their behavior during Jon’s illness and aftermath provides a perfect example of my siblings’ lack of insight into their effect on others, and their horrible behavior in times of crisis. This day was supposed to be about Jon, to honor him. To celebrate his life. Ted and Raechel transformed it into an opportunity to bully and torture Amanda. Their warped version will lay the blame on Amanda, who by default is completely innocent. Or, they will blame me, and make up outrageous lies to do it. These people, these siblings, are the worst. I have endured death threats, sexual advances, theft, slander, physical assaults and verbal abuse, jealous tirades and attempted sabotage in my profession, for years, from the lot of them.

I am so sick of these self-righteous boors, who are far too stupid to comprehend when they are trampling over the most delicate and fragile of creations – and if you point it out to them, they are too self-absorbed to care.

They are the worst that our country has to offer; almost a cliché of the Ugly American. Materialistic. Selfish. Obsessed with Stuff and using every coy trick and lie to cover their bad behavior.

So I wanted to change my name. This is not my family. I want no part of them.

I contemplated the legalities of disowning them. After all, I didn’t want any of them — except Amanda — showing up at MY funeral.

(Gee, if I were dead, maybe Amanda and I would finally get a chance to spend some time together.)

In the days and weeks following Jon’s service, I stayed near Judy, hoping to ease the transition where she was forced to wake up to an empty house. I made her breakfast. I invented ways to get her out and into the community. We went to the movies, in Amanda’s honor. We went shopping for groceries. We went for little drives up in the mountains. In the evening, we watched her favorite stupid reality show, “Bachelor In Paradise,” and laughing at their orchestrated romantic agony. Together we shouted and yelled at the moron who is currently president. We wept over Aretha and John McCain.

And we wept over Jon. A lot.

During these weeks I was fortunate enough to meet and spend time with people who had known my brother, Jon. Some, I had known from years prior. But I met a lot more of them. Many of them stopped by to check on Judy and just visit, and share memories. We attended the wedding of the intern who had replaced Jon in the field. I met Judy’s cousin, who told me he had known Jon since he was 15. “He was like an uncle to me. He straightened me out.”

The message, again and again, was clear. Jon Bailey, a good man. Jon Bailey, yes, I knew him. You are a Bailey? Jon’s sister. Oh, I knew him. Wonderful person. Just loved him. No one else like him. Jeez, I would not have made it, if it were not for Jon Bailey.

It was Jon who took on our Dad’s legacy. It lived through him. Family that goes beyond blood. Family as community. Hard work. Caring for the earth, and each other.  Telling the truth. Acts of kindness. Humor. Generosity. Admitting your mistakes. Apologizing when warranted. The quality that Dad had instilled in me, repeated again and again, “Do the right thing.”

Jon lived it.

In his absence, Jon was giving me back my name.

So today when the delivery came and the driver approached with a clipboard. “Needcha to sign.”

“What’s my sign?” I said. “I’m a Scorpio. Say, this is quite a gig you have here.”

He laughed, and held out the pen.

I took it and wrote, in big, confident script.

N.J. BAILEY.

We’d make Dad proud.

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Jon and me in Idaho, November 13, 2000

P.S. Re: Amanda. This is not rocket science. They can get her new glasses, take her to church, take her to the doctor, make her lose weight, whatever. But they are preventing her from expressing herself, they are smothering and censoring her past, and they are denying her contact with her closest sister. And now, they are preventing her from grieving her brother in the way that she chooses and needs to. She is already having a terrible time with the loss of her mom and dad, and now she has to deal with this, and they are attempting to take me away from her as well. This is a human rights violation and it is emotional abuse, and this is every bit as serious as if they were beating her or starving her or forcing her to take drugs. And instead of getting all offended over my yelling about it, and worrying about their own egos, they should damn well start listening to what I am telling them. Emotional abuse is very damaging, it can cause her major physical and psychological harm, and it is unacceptable. Just because the law is allowing it, does not make this okay. Just because they are managing to hide it from others besides me, or because I am the only one talking about this, DOES NOT MAKE IT OKAY!!!

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Down Syndrome, Guardianship Abuse: A Timeline

Once a guardian figures out he is an oligarch and answers to no one, including the law, there are no limits to his behavior.

This is a rundown on how the situation escalated with my sister, Amanda, who has Down syndrome.

The late Senator John McCain said, “America didn’t invent human rights. Those rights are common to all people: Nations, cultures, and religions cannot choose to simply opt out of them.”

I wish that were true. Unfortunately, America opts out of human rights. Cultures opt out of human rights. And, religion opts out of human rights. At least when it comes to Down syndrome.

My sister Amanda doesn’t have the right to call me any time she wants. She doesn’t have the right to have pizza with me. And now they are trying to tell us she can’t call me Blood Sister.

A lot of people ask why our siblings hate me so much. I don’t have the answer other than to say that it’s been going on for decades. I never really understood it, but I have always been different.

  • I like animals and prefer to keep to myself.
  • I wanted to stay in the woods rather than go to gatherings.
  • I never had kids.
  • I am not obsessed with food.
  • I was Dad’s favorite — we shared a love of the outdoors and books and Lewis and Clark lore.

I never understood the hostility. I mostly ignored them and just did my own thing.

Probably the worst thing about me, at least in their eyes, is that I do not subscribe to religious zealotry. I am interested in the concepts of God. And I like the story of Jesus. But I just don’t believe that only one religion is the right one. I think there is plenty of room for diversity and that the most important quality in any belief system is empathy.

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1970: Amanda and I have been good pals throughout our lives. It started the day she was born. Since then, we developed a close relationship, calling each other “blood sister” and maintaining a habit of regular “girls’ days out” with movies and pizza. We both looked forward to our outings. Beyond that, we are true friends, confiding and trusting each other and holding each other up. She has my back. I have hers. There is never an ugly word about me that comes out of her mouth. This sets her apart from my other siblings…. Her inherent kindness. Her gentleness.

Amanda Day 21

2013: When my father died, two siblings dragged her through a court battle vying for her guardianship. She had become an asset. I was mortified. I did my best to comfort her and lobbied hard for my brother to win, who was Amanda’s choice. During these months we co-wrote our book, “The North Side of Down.”

northsideofdown

Our brother Ted won the guardianship and for awhile, all was well. He took Amanda to live with him in Arizona in 2013, and although I missed her terribly, I had no worries. I did my best to support Ted in his efforts to get Amanda healthy and get along with her.

2014, 2015: When he brought her back to Michigan the following two summers, Amanda went on road trips with Clifford my trick horse and me, helping me out as sound technician as she always had. We resumed our movies and pizza celebrations. We even did a couple of book signings! Amanda is one of the few people with Down syndrome to ever write, or co-write, a book.

2016: Then, the situation changed. This was thanks to the influence of my brother Dan, who was immersed in a dispute with me over property that Dad left to me. Dan was harboring a grudge and decided to put a bug in Ted’s ear. He said that I was no good. That I could not be trusted. And he was not going all the way to Arizona just to pick up Amanda and bring her back to Michigan so that I could hang out with her all summer.

I must add that by this time, our oldest sister Robin, who has an MSW and had disrupted the family by filing for guardianship, had dribbled some poison into Ted’s ear as well. She told Ted that I am not good for Amanda.

When I learned this, I laughed. Robin is the biggest villain in our story.  Of course she is going to be disgruntled. But he gave credit to her opinions as a social worker.

And then there is the second oldest sister, Raechel, who is as toxic as the others, or perhaps more so. She was all to eager to hop on board, as was the third sister, Rebecca.

So Ted had all these people yanking him in one direction, away from me, based on age-old family jealousy and old baggage.

I was not too worried. Ted had been one of my best friends throughout his life. I knew he had my back.

But I was wrong.

He decided to pull the plug on Amanda staying with me, that summer in 2016. He caved in to the pressure and he dishonored my relationship with my blood sister.

He had the added ammunition that the judge who assigned guardianship in 2013 gave me a lecture in the courtroom. She told me that since my life was not in order, I was not a candidate for guardianship.

I had not filed for guardianship. But unbeknownst to me, Amanda had requested me.

I was in bankruptcy. I had lost my farm. It was during the low point in our economy and I had two publishing deals go bad. I badly needed to restore my life to some order, but I elected to take care of Mom, then Dad, then Amanda after their deaths.

So the judge’s lecture was not entirely incorrect, and it was certainly for Amanda’s benefit, explaining why her request was denied. But the one who was influenced was Ted.

And while the judge also said I was Amanda’s best friend, Ted must have missed that part.

The one thing the law does protect, supposedly, is that a ward can worship as he or she chooses. If Amanda wants to call me Blood Sister, she has the legal right to do so. If she wants to worship God one day and Buddha the next, no one can legally order her not to.

As the restrictions began in 2016, I was at first confused, and tried to be polite about it. But they were flinging Bible verses at me and the way they treated me, and spoke of Amanda, was so degrading that before long I could not control my rage. How dare these people interfere with our relationship! How dare they abuse a disabled woman by telling her that her past is meaningless! How dare they shove their religious beliefs down both our throats!

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Since then, the infighting over Amanda’s rights has escalated. I continue to grow angrier as other siblings spread vicious lies about why Amanda is being kept away from me. Raechel is the worst. She started trolling readers and art clients of mine, telling them outrageous untruths and then denying it when I confronted her. (BTW, if you comment on this public forum, you are essentially giving her your contact information. Post at your own risk! If you hear from her, please notify me immediately.)

The madder I get, the harder they wrap that noose around Amanda, which only serves to enrage me further. My love for her, and hers for me, is non-negotiable. My rage is akin to one a parent might feel. So, the problem is growing exponentially.

2018: Our oldest brother Jon died shortly after a lung cancer diagnosis. Ted allowed our brother’s memorial service to fall under this head game, virtually yanking Amanda away from me, tormenting her during the service and then making a scene afterward.

It’s bad enough she had to endure the loss of Jon, whom we both adored. But thanks to this pack of vampires, she lost precious hours with me, as well. I had not seen her in two years. We never even had the chance to mourn together.

All because the guardian has to be the big boss.

His actions have insulted me beyond repair. But worse, he has virtually beaten Amanda into submission; a position that does not suit her rollicking self, forcing her to exist in a half-life for the sharp-witted, fun loving person that she is.

Religion can be a sickness. It is used as a weapon in situations like this, wielded as a sword of superiority over those who may not believe the same way.

And with the way they behave, what reasonable person would?

As I have explained numerous times, to everyone involved, that to tear Amanda away from her lifetime’s significant people (and with our parents gone, I am still the most significant) is jeopardizing her health. People with Down syndrome develop deep attachments and to rip them away from their key people can result in dementia.

We just wanted to go to the movies, for God’s sake!

The law is not on Amanda’s side. The government could care less about what happens with her. Her siblings delight in torturing me, and don’t give a damn about the implications to her health.

So, here we are. Ted is a fool. He bought into the propaganda. He continues to allow it to escalate, tossing slabs of raw meat to the frothing, insatiably rabid Bailey crowd.

In many ways, this makes him even worse than they are. They’re lost souls, incapable of empathy. But he once was better than them. Now, he has elected to give in to their hatred. He has exhibited no character, no strength, and no concern for anyone besides himself. He has betrayed Amanda and he has betrayed me. And he has betrayed our parents, who trusted him implicitly with her care, as did I.

Meanwhile, where does this leave Amanda?

As Voltaire said, “Those who can make you believe absurdities, can make you commit atrocities.”

www.stopguardianshipabuse.com

 

 

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Clicker Training A Mare To Tolerate Clippers

Sophie is a Morgan mare who, at the impressive age of 36, has developed Cushing’s Disease. This has led to her inability to fully lose her winter coat despite 90+ degree temperatures in Eastern Washington. Her owner wanted to clip the hair off and give her some relief from the heat. But the owner, Allison, said that Sophie was afraid of the clippers.

sophie Morgan.jpg

Since Sophie is a Cushings mare, and therefore cannot tolerate a lot of sugar, we picked up a bag of black oiled sunflower seeds. Allison had never fed the seeds and hadn’t heard of giving them to horses.

Black oiled sunflower seeds offer a lot of benefits to older horses. They are easy to digest and they can help put weight on, as well as promoting shiny coats and strong hoofs.

We tied Sophie up on a long lead and began by offering her a couple of handfuls of seeds. Once she started looking for more, I began showing her what the click means. The process is to click, treat, click, treat. It didn’t take long before she started looking for food after the click.

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At her advanced age, Sophie doesn’t see very well. Therefore, I wanted to make sure she comprehended what was happening and nothing startled her.

I graduated to having her touch my closed fist with her nose. When her nose made contact, I would click for that. Once I had her successfully targeting my fist, reaching for it at different heights and positions, I knew she had a good understanding of the clicker and was ready to proceed to the next step.

Upon the sight of the clippers, Sophie immediately tensed up. Initially I was going to ask Allison to clip her while I handled the click and treats. But even before the clippers were turned on, the mare lunged violently backwards against her rope.

We had to regroup. I took the clippers and just rested them against her withers, clicked and treated her with a handful of seeds.

Every time I clicked, I had to walk away a couple of steps to get the seeds, which were sitting in a bowl nearby. I realized that this was adding a form of negative reinforcement on top of the positive reinforcement promised by the click.

Cool.

Once she was okay with the silent clippers and long dragging cord resting against her skin, I turned it on so she could hear the sound. I clicked her for standing calmly with the clippers running, without touching her with them.

Then, I touched her on the neck, holding the clippers against her skin so she could feel the vibration. The blade was away from her skin. She shivered but she stood there so I clicked immediately.

We progressed from there. I used a high rate of reinforcement and just kept on shoveling those seeds into her.

Finally, she was willing to permit me to shave a small area of her bridle path, where the halter goes. I took a couple of swipes of hair off her neck and she was okay with that.

I used a lot of scratching and petting and kept talking to her. At the end of the session, I asked Allison to try clipping her. Allison stood timidly and poked at her with the clippers, and the mare jumped.

I then explained, “If you ask from a place of fear, the answer will always be no.”

I went back a week later and Sophie remembered her lesson. We were able to get a good amount of hair off her neck and shoulder, before the blades went dull. By the time I left, we had weaned Sophie off the clicker, and were just using treats. Allison was able to clip her. It’s been years since she has seen Sophie’s summer coat, so I hope she sends photos!

 

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Down Syndrome, and Freedom of Speech — The Truth Isn’t The Truth

Who will be your guardian?

Who will take control when you are deemed unfit to make decisions?

For my sister Amanda, who has Down syndrome, this has already been decided. She is not allowed to mourn for her brother in the way she chooses.

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She was not permitted to hear a status update about him on the phone. The guardian took the phone away from her.

She asked for a moment. Her wish was not respected.

She was not permitted to grieve with her brother’s wife Judy, and me. She hadn’t seen Judy in a couple of years. She hadn’t seen me in over two years.

Our siblings set up a stage for drama at our brother’s memorial. Her guardian, and his wife, knew that we were going to ask for a few hours together.

His reason for cutting us off? There wasn’t one. He merely said, “I don’t trust you.”

Don’t trust what?!

Instead of pointing out what this is doing to her, I decided to trot out my resume. “Don’t trust me?!! I raised her. I taught her to tie her shoes. I taught her to read. I walked her to school. She’s my blood sister.”

I was informed that I did not raise her.

“Mom and Dad raised her,” he said.

Really? Were you there? Who took care of her when Dad was working all those hours and Mom was sleeping the day away? It sure as hell wasn’t you!

I was instructed to stop calling her, “Blood sister.”

“We’ve been calling each other that for 40 years!” I said.

“Look up the meaning.”

What arrogance! Why not just say what you mean, instead of telling someone to look it up?

If you look up the meaning, “Blood sister,” means, “Sisters related by blood.”

Which, we are.

This effort to censor us, to accuse us, to smother us, to crush our spirits and drive a wedge and keep us separated, to deny our long history and distort the truth, to say truth is not truth — this is abuse.

It is abusive to Amanda, and it is abusive to me.

People with Down syndrome, or in fact, anyone with an assigned guardian, do not have any rights. There is no freedom of speech.

These siblings did their best to make Jon’s memorial not about Jon. We wanted to grieve for Jon. Ted was not close to Jon. Ruthie did not even know him.

Amanda and I love Jon. We deserved the right to celebrate his life with Judy, his wife, in our own way.

We miss him dearly. We needed that time together.

They took my brother’s memorial service, and they turned it into something ugly. Something about power and spite. Something about hatred.

All because Amanda and I asked for a few hours together.

Don’t sign anything that says, “guardian.”

Don’t ever accept a guardian. They change.

Right-wing evangelicals are cult members. That is all this is. It is not based on anything but hypocrisy. They try to destroy someone’s past, because it doesn’t fit their fucked-up agenda. They think all that matters is the afterlife. Therefore they have no use for moments and hours here, and precious time slips away. They think it is okay to rob Amanda of time with her loved ones.

Amanda has Down syndrome. She is nearly 47 years old. Statistically, she has less than 10 years left to live.

If I see her every two years from now on, that means I may see her only four more times in my life.

Maybe less.

This Ruthie woman, whom I used to love, was standing in the parking lot following Jon’s service, and she called me a, “horrible person.”

Really? This was not YOUR brother.

You never knew him.

Not really.

I’m horrible? Which one of us is abusing my sister?

She is not YOUR sister!

And, she makes Amanda wear ugly church lady clothes.

And a bad wig.

My cool, hip sister, my wisecracking Blood Sister, is now living in a state of full scrutiny. She is subdued, quiet, cautious.

They decided to torment her further by taking her to Judy’s house two days after the service. They tricked me into leaving. They lied to Amanda, telling her I had gone back to Michigan. Amanda went into my room and found my suitcase in there.

Busted.

How do you think that made her feel?

And, it was an effort to create a rift between Judy and me.

They are very good at stirring up trouble among others.

What harm would there be, in allowing Amanda and Judy and me a few hours to spend just hanging out? Without these hyper-vigilant, insulting people anywhere near us? Even Mom and Dad understood that Amanda needed her own space and gave her the freedom to forge her own relationships.

They weren’t perfect parents. But, they were real, old-fashioned Christians. Not religious zealots.

These siblings are harboring long term grudges toward me. They think they can get to me by punishing Amanda. But it is Amanda who is suffering. They think she is too stupid to know what’s going on.

Or, they just don’t care.

People can change. The person you think you know, may not stay the same once they become your guardian.

Don’t assign a guardian. Find some other alternative.

StopGuardianshipAbuse.com 

 

 

 

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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

  1. Mean

Sees Amanda just lost her favorite brother, Jon. (Yep, sorry Ted, he is way ahead of you. I am sure she still loves and forgives you though. God knows why.) Despite this traumatic loss, denies her the right to grieve with her blood sister (that would be me), and Jon’s wife.

Knows he is abusing her in deep and indelible ways, and perhaps creating irreparable damage to her psyche. Doesn’t care.

2. Crazy:

Got religion. Thinks there is only one way to look at the world. Thinks there is only one religion that matters. Thinks he is now all knowing and all powerful. Thinks God will help him through this mess and God has given him the power of the guardianship so he can do whatever he wants with Amanda, including mentally tormenting her and treating her like a prisoner.

Thinks he will find all the answers in the Bible.

Jesus, who knows what he thinks?

3. Stupid:

  • See number 2.
  • Has no perception of the damage he is doing. Does not understand that people with Down syndrome form deep attachments and when these are ripped apart, they can be catapulted into a state of dementia.
  • Thinks Amanda does not need me and that he and Ruthie can fill my role.
  • Thinks Amanda will get over missing me because now she has them.
  • Thinks Amanda can be subdued and will forget about me if they give her enough pills.
  • Thinks she will “get used to” life without me.
  • Thinks Amanda is too dumb to understand or remember what they are doing to her.
  • Thinks Amanda does not harbor anger or resentment, and so it’s okay for him to do whatever, because she is a pussycat.
  • Thinks he knows better than anyone else what is best for Amanda.
  • Thinks Amanda has to learn a lesson that she can’t always have what she wants. Thinks this will be good for her.
  • Thinks he can teach me some kind of lesson by keeping us apart.
  • Thinks forcing her to stay away from me at gatherings, preventing her from having quality time with me, and attempting to destroy our history together by censoring language and memories does not constitute abuse.
  • Only mental professional involved (if there is one) is either a) his own evil sister Robin or b) some cult member of the same church.
  • Thinks only his own feelings matter.
  • Thinks Amanda looks good in ugly clothes.

 

None of these reasons are any excuse for abusing Amanda…. My blood sister.

And it doesn’t matter whether you like me or not. She does, and I am still her sister. #leaveusalone

Stop Guardianship Abuse

 

AmandaMeSoo

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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 include women with disabilities, some of whom are still silenced and smothered in a Handmaid’s Tale-esque fashion hidden from the public eye.

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Aretha, pastel by Nancy

Have you ever attended a memorial service for a beloved sibling, and meanwhile a second treasured family member was also taken from you?

This is what just happened to my sister, Amanda.

She lost two people.

Amanda has Down syndrome.

She made the sad trip with her guardian Ted Bailey, all the way from Arizona to Washington state, to mourn the untimely passing of our oldest brother, Jon.

Cancer took him suddenly. He was diagnosed with a malignant tumor, his first chemo treatment scheduled for Thursday August 2, and on Sunday August 5, he was gone.

After conferring with Jon’s wife Judy, we decided to prepare Amanda with a phone call, and explain to her that Jon was in ICU. I told Amanda it didn’t look good, but we were giving him every chance.

She was horrified, but she took it bravely. She asked me to call her with updates. I promised that I would. I called her the next day with the bad news that we were deciding to remove the tube and let him go.

She immediately started crying, naturally. She began asking me questions about who was present in the room. I was naming names. His wife Judy. His son, Erik.

Just then, I heard her say, “No! Ted! Please! Let me have my moment!”

But because Amanda has no rights, her guardian snatched the phone away from her. “You are upsetting Amanda.”

I’m upsetting Amanda?! I think the situation is upsetting Amanda. In fact, the situation had both of us, and many other people, damned upset. Can you say, “shoot the messenger”?

“Put her back on the phone,” I said. “We are not done talking.”

“Amanda needs to calm down.”

“She doesn’t need to calm down! She can cry if she wants to! And we are talking! She asked you to give her a moment! Our brother is dying and she needs to talk about this!”

Every protest of his was greeted by escalated screaming from me. He finally hung up on me.

This is the type of person Amanda has to put up with, now. He did not raise her. He may be our brother but he did not grow up with her. During all her early years, he was not there.

When our mother was ill, he was not there. The day she died, Ted was not there.

When our father was ill, he was not there. The day he died, Ted was not there.

I was there.

Jon was not Ted’s favorite brother. But he was our favorite.

I promptly told Ted he could take his control issues and shove them in a place that rarely sees daylight. I did not put it quite that politely.

Amanda had one big thing to look forward to, upon arriving in Seattle at this terrible time in her life.

She could do a Girl’s Day Out with us, Judy and me, as we used to do when Jon lived in Michigan. We were the Three Musketeers.

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We would laugh and cry together, reminiscing about those times. We would come away no less sad, but knowing that we had shared in our sadness. We still have each other.

Amanda is 48 years old. She has spent years and years doing Girl’s Days Out with me.

But Amanda was prevented from having this experience, this chance to mourn with her “Blood Sister and Blood Sister In Law”.

Why? Because the guardian was having a tantrum, presumably because I cussed him out over the phone.

He took his crybaby mentality, and he made Amanda pay for it.

People with Down syndrome develop deep attachments. When they are ripped away from loved ones, they are more susceptible to dementia. As it is, about one in four people with Ds end up with Alzheimer’s or some similar illness.

In other words, Ted’s actions are more than upsetting. They are jeopardizing Amanda’s health.

Oh, and as an aside, TED BAILEY should probably do his research on just how far he can overstep his boundaries as (not a human being) guardian. Because the one human right the court will grant Amanda is the right to worship as she chooses. She could be an atheist if she wants to. She can be a Buddhist. She can be pagan. And she can call me, “Blood Sister” until the cows come home. So you not only have no moral right to censor that, you also have no legal right to do so.

As I explained in my prior post, these siblings managed to turn Jon’s memorial into a drama-filled circus show. They yammered on for so long at the podium that they prevented other friends and community members from saying anything. They drove people out of the service. At the end, they made a scene in the parking lot when one sister RAECHEL KOLB assaulted me physically. But the worst part was, despite being asked nicely by both Judy and me, Ted denied Amanda the one thing — THE ONE THING — that would help her the most on this terrible day.

Instead of treating her with dignity and RESPECT, he turned Jon’s memorial into a self-serving effort to further his freak-show, control-riddled, right-wing evangelical agenda.

This is who Amanda gets to answer to, now.

It gets worse.

On Tuesday, our brother DAN BAILEY called Judy at home. He requested a visit with her. Since I am staying at Jon’s house with Judy, he asked that I not be present for the meeting.

I am fine with that. I prefer not to be anywhere near DAN BAILEY, a financial planner who lives in Cadillac. He is angry with me about a dispute over a section of Dad’s Drummond Island property, wherein he is attempting to commandeer a lot that Dad had designated to Amanda and me. The space isn’t fancy, but rife with memories as it includes Clifford’s horse corral, and the trailer Amanda and I have stayed in together, over so many years.

Dan Bailey has a lot of issues. He initiated problems between Ted and me when he took a trip to Arizona to pick up Amanda in 2016. Ted’s wife RUTHIE BAILEY told me I couldn’t keep Amanda at my house unless I paid for the flight to go get her.

It all boils down to money, doesn’t it? The law does not protect Amanda. The way to protect Amanda is to hire an aggressive lawyer.

That summer, I saw Amanda once, for two hours. That was our last visit until Jon’s memorial.

On Tuesday, when I left Jon’s to go sightseeing by myself, Dan sneaked Amanda in to see Judy.

Apparently he lied to Amanda and told her I had already flown back to Michigan.

Dudes, we are not stupid. You are attempting to hurt me. But you are really hurting Amanda. You are committing emotional abuse. And you are an affront to all women.

You should listen to that song as Aretha sang it. I am sure you will be hearing it now. RESPECT….

Because when she got to Jon’s house, Amanda checked for herself. She marched into that spare bedroom and saw my luggage and some of my clothes laid out on the bed.

She came right back out and told Dan, “Nancy’s suitcase is still here.”

You can fool some of the people some of the time, DAN BAILEY. TED BAILEY. But you can’t outwit a smart woman, even if she has Down syndrome.

Amanda knows she is getting screwed.

We see you.

And now the world will see you, too.

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BTW, if you want to read the story Amanda and I wrote together, click this link. We split the royalties 50/50. If we sell enough books, maybe we can afford that lawyer after all.

northsideofdown

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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. You will lose some of your faculties. You will know what it is like to be dependent upon someone else, such as someone who has Power of Attorney over you.

Or, a Guardian.

With the way the law stands right now, the guardian could decide not to let your wife, children or siblings visit you. Even if you ask for them. Even if you beg for them. The guardian chooses.

If the guardian has a grudge against one of your family members, who has called him out for being an asshole, guess who pays?

Not him.

You do.

He will also have complete and free access to all your finances and possessions. If he decides to empty your bank account and take himself for a joy ride to Seattle, he is free to legally do that.

You can do nothing about it.

If he decides to give you drugs to “keep you calm” and shut you up, guess what? You have no recourse.

My brother Jon, who died August 5th, gave my narcissistic siblings an opportunity to play a little game with Amanda and me.

And oh boy, did they play it well.

They knew full well that Amanda and I had waited over 3 years for a chance to do a Girl’s Day Out… A movie and pizza.

We both hoped this was our chance.

We also both loved Jon, whom as it turns out, was the only decent person in the remaining immediate family.

This was our chance to cry together, have our memories together, and help each other through the horrific loss.

The key word is, “Together.”

At Jon’s memorial, I first spot Amanda, and she gets up and hobbles across the room. She is having a lot of problems with her knee, which apparently are not being addressed. She is using a cane. She grabs me and hugs me so tight, and we both weep, whispering that we miss each other and love each other.

(The other thing not being addressed, which I have noticed before, is her clothing. She is dressed like a sister wife. It’s horrible. Purple and black paisley from Polyester Town, and a bad wig. Really she deserves better. But I digress.)

Meanwhile her guardian TED BAILEY is hovering about six feet away, watching every move, not even allowing us this one private, healing moment.

northsideofdown

The North Side of Down —  Winner of the 2015 BRAG Medallion. We Tell It Like It Is! “If people wanted to be remembered warmly, they should have behaved better.”

We are having the conversation when the second oldest sister RAECHEL BAILEY KOLB who is for some reason compelled to stick her face in every situation, comes up and with a high, verging-on-hysterical-I-am-actually-trying-to-pull-you-away-from-her-under-the-guise-of-getting-you-to-participate voice, asks me to come and help her move some chairs.

I had sent RAECHEL an email specifically asking her to stay away from me at this event.

“I am talking to Amanda.” I do not look at her.

Then, the guardian’s wife, RUTHIE BAILEY comes charging over and barks at me. “She needs to get off her leg!”

Amanda covers with her typical graciousness. She turns to me. “Would you like to sit with me?”

She holds out her hand. I take it and we find a chair. We talk some more about travel. I tell her about my fiasco getting to Seattle, and staying in the motel with my 50-lb chest of drawers on wheels that I had to lunk down two flights of stairs. We laugh. Our conversation is monitored by RAECHEL’s HUSBAND, ED. I don’t care. Whatever.

It comes time for Amanda to find a seat. I help her get to the front row. RAECHEL informs me that Amanda is to sit on the end, and I can sit there too if I so desire. Great! Cool! I sit Amanda down and prepared to sit next to her.

The Guardian TED BAILEY marches up. “Nancy I am sitting beside Amanda.”

“Of course,” I say graciously. But I forget to genuflect.

Not wishing to sit near any other siblings, I walk to the back of the room.

I do not stay in the service. The first person to get up and start talking is ROBIN. The oldest. Jon could not stand ROBIN. I get up and walk out of the building. I decide to just hang out, outside, until the speaking part is over and maybe when the food comes out I can talk to Amanda a little more.

The speaking goes on and ON and on. I greet stragglers outside, introducing myself. Many of them are elderly and I help them through the door and guide them to the guest book. I then step back out.

Finally, the thing ends and people start getting food. Naturally, Amanda is surrounded by siblings and in-laws whom I have no wish to interact with. That’s okay. Everyone should be allowed equal time.  Now and then she turns her head and gazes at me wistfully from across the room. I wave, give her thumbs up, and go on mingling. There is a great photo show featuring Jon in various stages of his life, that his son has made, so many memories flashing across the big screen.

One time, Amanda hobbles to the bathroom leaning on RAECHEL BAILEY, looking like a prisoner being marched out of the courtroom. As she passes, she mouths, “I love you,” at me. I laugh and smile.

At the end of the event, even though I do not want to talk with her, I politely ask RUTHIE BAILEY what day they are leaving for Michigan.

“I think Thursday.”

It was Sunday. Cool. “That gives us plenty of time for a Girl’s Day Out!”

RUTHIE BAILEY throws her hands up. “Don’t mention that!”

“What? Why? We want to do the movies and pizza. With Judy. The Three Musketeers. Like the old days.”

“Yes!” Amanda agrees.

“You will have to ask Ted. He’s the guardian.”

There are few people in the world I want to talk to LESS than TED BAILEY. These include all three of the R’s.

But it was for Amanda, so I suck it up. “Ted! I am instructed to ask you if we can have a day for Girl’s Day Out. Judy, Amanda and me. Pizza and a movie.”

“I’m sorry.” he snips.

He turns to walk away.

“So that’s it?”

“I’m sorry.”

“Wait a minute.”

I run outside after him. Judy hollers at me to stop. I am on a mission. I am not about to just lie down for this. I have not seen my sister in 3 years and that was for only two hours.  Since then, we have been through guardianship Hell when we were forced to stop communicating for 9 months, until I filed a petition in court.

Amanda has suffered a lot. She has come a long way. I am not about to let her down.

“I don’t trust you,” he snips.

“That’s my blood sister!”

“I don’t approve of that terminology.”

“WHAT?!!! We’ve been calling each other Blood Sisters since she was eight or nine years old!”

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Grizzly Adams, “Blood Brothers”

“Look up the meaning.”

(The meaning for ‘blood sister’ is, ‘sisters related by blood.’ Which, we are. However, it probably has some weird superstitious implication these days, smothered under the hyper-religious, like other good things such as chocolate and R rated movies. TED AND RUTHIE belong to an evangelical church that apparently has fallen over the edge into the Cult abyss.)

By the way, he does not have the right to impose his religious beliefs on Amanda. Her freedom to worship as she chooses is protected by law. Therefore, she can call me “Blood Sister” until the cows come home. He can’t stop her. At least, not legally.

Just then, who approaches me for the third time, now after being specifically asked not to, but RAECHEL BAILEY. I am standing with my arm around Amanda. I am so shocked by the confrontation, I have left the building so suddenly, that I am still holding a glass of lemonade in my left hand. I am talking about how I raised Amanda and taught her to tie her shoes and walked her to school and taught her to read. Amanda is standing silently with her shoulder snugged in under my arm.

RAECHEL digs her talons into my wrist and starts trying to pry my hand off of Amanda’s shoulder.

“Don’t touch me!” I snap.

“Let her go!”

“You let ME go!”

“You’re not the guardian!”

“Get off of me right now,” I warn for the third time.

“Let her go,” she is still clawing and tugging.

I fling the lemonade. The contents of the entire cup splash on her face and head and dribble down. Some of it gets on Amanda’s shoulder, but because she is wearing ugly polyester, it is easy for me to brush off.

“You are horrible people,” I say to TED AND RUTHIE.

“YOU are a horrible person,” RUTHIE snaps back.

“To hell with all of you.”

I storm away. I walk up the street, leaving the lot of poisoned siblings behind, as well as my poor Blood Sister, who has been cast with the great misfortune of being assigned to people like TED and RUTHIE… People who only care for their own agenda, their own feelings, their own warped sense of propriety. People who abuse her in deep and emotional ways, who won’t let her see a movie with her sister when their brother dies. People who try to erase her past by forbidding phrases that mean so much to her, like “Girl’s Day Out” and, “Blood Sister.” People who won’t let her sit with the person she most wants to see in the world. People who have no qualms about doling out traumatic events like this, shoveling pain on her, and blaming everyone else but themselves, when in truth THEY are the ones who could so easily fix it.

Amanda and I wrote an award-winning book together, “The North Side of Down.” We share the meager royalties, 50/50. I expected the R’s to be angry about the book but Ted fully supported it at the time. I never thought he would betray me by jumping on board with them. Things became complicated when he got religion.

People change.

If you are not careful, when you are old, you could end up with a guardian like this. Be very careful where you sign your name.

And for the love of God, if you have a child with a disability, make provisions for them in case anything happens to you.

 

P.S.  RAECHEL, who physically assaulted me in the parking lot by grabbing and jerking my hand, actually called the police and asked them to arrest me about the lemonade. I explained to the officer that maybe he should arrest her. He opted to just take the report.

You see, these people think the same rules don’t apply to them.

Be careful about giving away your power.

— Signed,

Amanda’s Blood Sister

…To be continued.

0813182026

 

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It Ain’t Dyin’ I’m Talking About, It’s Livin’

It’s ironic that I have to follow up my last post, “When the Curtain Grows Thin”, which was about messages we receive from loved ones who have left their earthly shell and gone to what Jon would call the Happy Hunting Grounds.

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Jon is my brother, the oldest and undoubtedly the wisest, wisdom gained through the cracks and chisels of a rough-and-tumble life that at times left crumbles of personal devastation in its wake.

At 6 foot one and I don’t know how many pounds, he seemed immortal. He was a wall. A big, sometimes scary wall, ham-handed but with an intelligence that ran deep and cut through the stereotype of a backwoodsman. He grew up in Northern Michigan, where the loons wailed and freighters chugged through the St Mary’s in our backyard. He joined the Navy and served on the USS Ticonderoga, sailing to Singapore and parts unknown, and his ship even picked up one of the Apollos when it splashed down. (No, not THAT Apollo.)

He moved on to Whidbey Island and was stationed there and made a career as a Naval air control officer. After retirement, he went to work on the irrigation systems in the high desert east of the Cascades.

He was 11 years older than me, and even though he left home when I was young, he was still an indelible presence. He was loud, funny, with an inherent kindness. He gave me my first very own dog, a black Lab named Lucia, when I was twelve. What twelve year old girl wouldn’t adore a brother like that?

He adopted the Pacific Northwest, melting into the mountain lifestyle as naturally as one born there. Over years, and decades, he hiked miles up through high country and killed elk every fall. He would pack the meat out and cook it, making elk stew and steak and ground up patties. From the antlers, he made me a whip and a kitchen knife, the handles carefully crafted and smooth as silk. Later he adopted a couple of horses, and used them to trail the elk herds up into the rocky heights. He said if he had realized how easy it was, he would never have spent all those years climbing on foot! He had a natural way with animals and always owned Labradors. We argued over what was better; the Lab or the “stupid G.S.Ds”.

I could go on and on about him. The times we went horseback riding. The day he got on my sturdy little Morgan, Clifford, and admitted with surprise as he strode right out, “Hey! This is a great little horse!” The time, for my birthday, he drove me all the way from Washington up into the Idaho panhandle because I had always wanted to see it. Our shared love for the Larry McMurtry miniseries, “Lonesome Dove.” (We often recited the lines back and forth to each other. I can’t watch it without thinking of him.) The many times he stood up for me against crazy, mean-spirited siblings. The times he listened carefully when I had a problem, and gave me advice in words that cut with truth. The time, during one of my book signing events, he got up to the podium and talked about me. He told how I had always been a writer, and how I was trying to write, making marks and dashes on the paper, before I had even learned the alphabet.

He told me things about myself I never knew.

“Life is a roller coaster, Nancy. Some days you go up, and some days you go down. On your way down, remember that you are just about to go up again.”

His greatest gift to me, besides his sons, the handsome and charming, eerily smart Blaine and the tall and silent, eerily insightful Erik, and Lucia the dog, was his wife Judy. His choice surprised me. She was short, natural, quiet; more pleasant-faced sidekick than sex symbol. But she complimented his big, flashy self perfectly. She loves wolves and animals, and he told her shortly after they met that of all his siblings, she would get along best with his sister, Nancy.

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Jon, Judy and me, April 2013

He was completely unpretentious in his wisdom. As he said, he was, “Part Grizzly Bear, Part Wildcat.”

Of all my siblings, he had the deepest understanding and respect for my sister Amanda, the best knack for teasing her and the best insight to explain her motives to someone else.

“He’s a rootin’ tootin’ boy.” Amanda summed him up perfectly.

I am not sure what life is going to be like now. I am pretty sure I don’t really want to think about it yet. I am dumbfounded. I don’t know he is gone. I am not sure how I will react when I figure it out. And this is all stream of consciousness; there is so much more to say about someone who took up so much space.

He stormed through life, stomping into a room, filling it with his presence. And yet he managed to leave no trace. How did he do that? I only know that he lived… Voraciously, fiercely, and with vigor. Of all the brothers I could have had, even though he left too soon, I am so glad I was awarded this one.

…Been quite a party, ain’t it, Woodrow?

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