Down Syndrome – And The Chokehold of Guardianship

When she was home in July, the guardian made Amanda cry again. She broke down in the Northwood, one of our favorite restaurant hangouts on Drummond, begging him to “Please, I just want to hang out with Nancy. Please, Ted.”

He said, “I’m sorry.” He stood up and grabbed Amanda by the shoulder, encouraging her to get up and leave with him.

“You’re abusing her right now!” I shouted.

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.

I had traveled north and stayed on the island thanks to contributions from friends who wanted to see Amanda and me have some quality time together. One of the reasons the siblings feel free to crap all over us is because they know I don’t have a lot of money for legal fees. Thanks to the moral and financial support of friends, I was able to afford to get up there, pay for accommodations, and to feed myself and in the meantime try to find a civil way to make peace with Amanda’s guardian.

Before the restaurant incident, after which all bets were off, I had offered him a meeting of the minds. Instead, he stood outside the camper where they were staying, and accused me of all kinds of acts that were complete lies. Because when someone has done nothing wrong, what else can you do? For an example, Amanda was in the cart when the traces broke in a 1999 accident with Trudy where I was pulled out by the reins. I smashed my face to smithereens and needed surgery. Amanda remained sitting in the cart, unhurt. (The whole incident is recorded in my book, “Return to Manitou.”) Ted has decided that this is the very incident that caused Amanda’s blindness in one of her eyes…. Despite the fact that Amanda told him she wasn’t hurt in the accident.

This is the scope of evil that Amanda now lives with. If you can’t find a reason to emotionally batter a person, then make one up. Better yet, base it upon a true incident, and then twist the knife.

Amanda’s been having eye problems since as far back as the early 1990’s when she was still in school. Looks like I will have to see if my ex husband would be willing to write another affidavit to confirm this, too. God knows the other siblings won’t… Actually they probably wouldn’t remember anyway. They didn’t spend that much time around her.

Where was Ted when this accident occurred? Arizona, of course. Man, he sure knows a lot about what goes on around here. Amanda and I both have eye problems, but he must have pretty good vision to be able to see everything with such clarity, from such a distance.

Friends pointed out that the seatbelt is positioned across Amanda’s throat. I politely told her guardian that Amanda needed a booster seat. “She’s such a little person. I’m sure they make some for adults that wouldn’t be too humiliating for her.”

“She’s not a little person!” he snapped. “She’s 4 foot 10 and 150 lbs! She’s fine.”

Can’t tell him anything — even when it comes to her well-being.

One year ago today, he made a scene at Jon’s funeral. Our brother had died. His ashes were in a jar. And yet Ted thought it would be cool to forbid Amanda and me to go out for pizza and a movie with Jon’s widow, Judy, like we used to do in the old days when she lived on Drummond. Why did he forbid this? Same kind of crap. Oh, and Amanda and I are forbidden to keep calling each other “blood sister” — even though we have been using the endearment for 40 years. But he doesn’t approve of that.

It’s the hallmark of a narcissist. If you see that someone has something, take it. If you see a loving relationship, break it up. Anything that has nothing to do with you must come to an end.

Incidentally, during this exchange at Jon’s funeral, our sister Raechel decided to physically assault me, grabbing me by the arm and trying to pull me away from Amanda.

Scene from Jon’s funeral.

This whole group needs a proverbial dousing from a big ol’ tub of lemonade. Cool off, people. Get a little taste of reality. Have some sweet and sour. Pull your heads out. Really…. Don’t you have something better to do than to try to make life miserable for a disabled woman?

All we want is to be left alone, to have our movie and pizza in peace.

If Amanda wasn’t worth a monthly stipend, I daresay things would be a lot different. In short, they would have dumped her on me so fast my head would spin. Like they did our parents. I was glad to be their caretaker — but nobody else was the least bit interested in Amanda back then!

Money talks.

And so does my blog, doesn’t it? During our 2019 meeting, when I asked the guardian what he wanted from me, the answer was, “Stop blogging.”

He wouldn’t say for how long. He wouldn’t make any promises. I was supposed to just stop blogging, indefinitely, and then maybe — just maybe — I could see Amanda again.

So Amanda is held hostage, in his hopes of controlling my first amendment rights.

I don’t negotiate with bullies. Anyway, he doesn’t uphold his agreements. He said he was going to be on Drummond over the 4th, and that I could visit Amanda at that time. My friend Cindy and I drove six hours and spent a boatload of cash to go look for her on the island, to find that we had been tricked. They weren’t there. We drove 12 hours for nothing. Cindy brought gifts she had made for Amanda.

So Ted lies. I will not be making any deals with him. But I told him the answer to his blog conundrum is so simple, and it’s right in his hands. You don’t want your nasty actions featured in a blog? Do the right thing. Give me something GOOD to write about.

I would be happy to share good news. Ecstatic, in fact.

Thanks to the Drummond community. Someone spotted Amanda and let me know she was around. It was later in the month, after the 4th. I had to make another trip up. Everyone knows Amanda and they all know she’s being held hostage. That’s the beauty of a small town!

There is much more to tell about the 2019 summer on Drummond, about the abuse from Amanda’s guardian, about his lies and manipulation. I imagine it will come out as I feel the need to vent. But really, isn’t the next step to file another petition?

This will be my third petition for visitation. The other two were in Michigan and both judges refused to meet Amanda in person.

This time, it will be different.

If you watch the videos you will see that Amanda has no trouble communicating.

As I mentioned, I’ve got an affidavit from my ex, stating that Amanda lived with us every summer for a lot of years, and that our relationship was never anything but nurturing toward her. I am sure he would be also willing to confirm that she was not injured in the cart accident.

It’s pretty bad when the guy you divorced is a more upstanding citizen than your own siblings. But, this is our reality. Amanda adored Bruce. They were very close.

One of the reasons that guardianship is so damaging is because it’s so hard to fight. Arizona has better laws, with more regard for the ward’s feelings, but it’s expensive. The petition alone is $365. This is if I stay here in Michigan and try to conduct a hearing by phone, if they will let me.

I can’t afford travel right now. I shouldn’t have to. They should not be doing to my sister.

I will be selling some Elephant Art as a fundraiser. Meanwhile if you want to just send a contribution, feel free. I’m not too proud to accept the help on behalf of my sister’s well-being. I have to raise $365… As a start. http://paypal.me/cliffysmom

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Posted in abuse, amanda, down syndrome, down's, down's syndrome, empathy, guardianship, The North Side of Down | Tagged , , , , , , , | 3 Comments

Therapy Horses – Passing the Torch

My Junior Horse Kerry 7th Gen felt the weight of responsibility come crashing down onto his withers during the first few days of July. Due to the sudden deaths of both my beloved Morgans, Clifford and Trudy, JR was not only an only horse, he found his role as understudy ushered onto center stage.

JR and I were both in a state of mourning and we were depending heavily on each other for support. I started working with him in 20 minutes sessions two and sometimes even three times a day,

He was not entirely new to public appearances, having accompanied his mentor and great-uncle Clifford to some of the equine expos and other events. He could already play fetch and stand on a mark, nod his head “yes” and “no”, and had learned to bow, too.

But still, the 8 year old newbie had a lot of ground to cover. Like most horses, he was reactive, with the added unpleasant bonus of liking to kick with his hind feet.

Once it became apparent that even with Clifford gone, Sparrow Hospital was still interested in a horse therapy program, my first order of business was to teach JR to keep all his feet on the ground, to look to me for direction and stay focused.

A horse’s reactive nature can be softened with training, as the attention span grows longer and the end result is the goal. I started working with JR on lowering his head. After a couple of weeks of training, we were ready to take JR to his first ‘test run”, a maiden voyage to Sparrow Hospital parking lot to meet staff and see what wheelchairs were all about.

I wasn’t too worried about the wheelchairs. He had met all kinds of people at the Expos. I wasn’t sure how he was going to react to performing in a parking lot. That would be all new to him.

Thanks to our loyal friend Stayner, who brought the Silver Bullet to pick us up, JR was able to travel in comfort and style to the hospital. He came off the trailer in a cold sweat. He was pretty scared. He hadn’t traveled very much, and when he did, it was with a companion. He unloaded just fine and then as soon as I started cueing him to nod his head, and he heard the clicker working, he calmed right down.

It got better. He even played around with his Aunt Judy and pushed the wheelchair.

He is a gregarious sort to begin with so was more than happy to handle the meet-and-greet aspect of the job. He even got to say hello to a couple of patients. He posed for photos, exactly has he had been taught, retrieved his whip, and even executed a perfect bow right there in the parking lot, to much applause.

It was a no-frills visit. JR has never been outfitted with an artist’s beret, or worn silly glasses, or a big peppermint bandanna. He doesn’t have a fancy halter with his name on it, or a colorful hand-painted blanket.

But our mentor was there in spirit, watching from the window, as JR saw his reflection and nickered to it. The image, so much like Clifford, nodded back. And when the car pulled out of the spot right next to the horse trailer, it revealed a smattering of peppermints that had been lying on the ground underneath.

Of all the things to show up! Peppermints, of course, were Clifford’s jackpot treat, and I hadn’t brought any this time. They just make me too emotional. JR instead had apples and carrots and some Twizzlers along with the commercial crunchy horse treats. JR had passed his “exam” with flying colors. This constellation of mints, the sign of goodwill, showed me that we were on the right track, and that Clifford approves… From wherever he is.

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Puppy Boot Camp – Klaus GSD – Day 1 – Jumping Up

Klaus is a German shepherd with a jumping habit that is not so cute anymore as he is now able to get to chest level.

He started clicker training today and we will begin the process of getting rid of the jumping.

The way I do this is to reward him for attention without rewarding the jumping.

I don’t talk to the dog too much or call him too much. Puppies have a strong following instinct. If he has to keep an eye on me, then it puts some responsibility on him and it becomes a good habit.

He also has a bit of gator mouth, so I am eliminating the hard biting the same way I did with Arthur. His bite is getting more gentle already but he will need to be reminded.

We are working on some attention training, including eye contact. This is pretty easy to teach — I just hold the food up by my eye before delivering to him. I like teaching eye contact because you can really see the light bulb go on when the puppy makes the connection. You instantly start to become more important.

Klaus is a joy to work with, like many German shepherds. Great nerve, work ethic, food drive and a sweetie to boot.

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Clifford’s Hug Fest

Clifford’s friend Judy is the nurse who started horse therapy at Sparrow Hospital. We visited the pediatric oncology unit last week. It was Clifford’s second visit there. He clip-clopped across the parking lot and kept looking at the door. He was clearly expecting to go inside the building.

Judy apparently thought he needed more to do because she contacted the City Rescue Mission of Lansing and got him a visit scheduled there. We went yesterday evening. Their facility had a big green lawn in the back complete with fence. There is a beautiful mural on the wall with a unicorn in bright colors.

When the kids came out, most of them had never met a horse in person. A couple of them shied away at first, but the rest couldn’t wait to get their hands on him. I’ve never seen a group of kids so anxious for hands-on contact. They didn’t ask what tricks he could do or anything. The questions were, “Can I touch him? How old is he? What does he like to eat? Can I kiss him, too? Can I take him for a walk?” 

Clifford was eating up the attention, and the lawn. Since the kids were old enough to watch where his feet were going (to avoid getting stepped on) I just let them lead him away. They went off in a small cluster around him. Clifford stepped right out. He was all too happy to oblige.

I felt a little bad for Judy, because she had come prepared with a big treat basket for Clifford, which included oatmeal cookies, apples that she had carefully cut up, baby carrots, Twizzlers, sugar cubes, a bottle of molasses and a box of apple cinnamon toasted oats. She kept asking if it was time to give him treats, but the kids were so hands-on that I didn’t want to spoil it by turning Clifford into his obnoxious treat snarfing Nasty Face. I just let the minutes play out as the kids brushed him with little soft brushes Judy had provided.

It occurred to me that these kids, who were sheltered along with their mothers mostly due to some trauma, needed to have something they could control. Leading him around gave them a little bit of power. His size, big but not too big, his amiable personality and the feel of him — one boy kept saying, “He’s so warm! He’s so warm!”

These kids needed reassurance, and nurturing. Nothing provides that in the same way a horse does. That big wall of muscle and smooth hair, that unique sweet, sharp smell, the soft grinding chewing sounds, the whiskers, the eyelashes, the muzzle so soft it almost isn’t there… All the senses spring to life when interacting with a horse.

Kids who are safe, who have security and stable families, want to sit back and watch a show. These kids needed hugs.

There were other kids inside, younger ones, who for some reason didn’t come out. They were clamoring at the window. The children led Clifford over to the window. When he saw them waving at him, he stepped over there and put his nose against the glass.

Judy said, “Can they come out?”

The director said that she would see. When the door burst open, the little ones came flying outside, rushing straight at the horse with no hesitation. The pudgy hands rested against his sides, and the smiles and wonder on their faces was so heart-warming.

The little children were followed by their mothers: women walking hesitantly into the sunlight, coming forward tentatively, then gradually began smiling, laughing, and hugging Clifford as they saw there was nothing in the atmosphere but pure goodwill.

Judy had provided all the perks, and that included a bunch of Clifford books for the kids. We finally put Clifford to work signing them. One of the boys said he didn’t want my signature. He wanted Clifford to sign it. After Clifford made his mark, he told me, “NOW you can sign it!”

I laughed. He held up a horse hair and asked me if he could keep it, and put it in the book. “Of course!” I said. I reached up on Clifford’s neck and yanked out a few more mane hairs. “Here you go.”

He was leaning and lying across Clifford’s shoulders and I said, “Are you this good with dogs, too?”

“I guess so,” he said.

“Maybe you will be a veterinarian!” I said.

It was the first time anyone had asked me for some of his mane.

The cupcakes disappeared. We were thanked dozens of times.

As a former battered woman, one who has been abused not only physically but emotionally, I had the perspective to see the benefit of our short hours at the center… and how much good can be done by a person like Judy Neiburg. Through Clifford she was showing the ladies there is life out here! See how happy your kids are! There is more to the world than you have ever imagined. It is waiting for you.

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The Evolution of Loki – From Street Dog To Actor Dog

When he showed up, I guessed Loki to be about ten months old. He had the body of a prize fighter, the lightweight division, wasp-waisted and muscular. He flung himself to the end of the retractable leash and went whirring directly under the parked truck in the driveway.

Loki was my newest student in Puppy Boot Camp in 2018. At first glance he could be assessed as a Doberman mix, with the glossy coat and red accents on his face and legs. His front feet were clawed and pointed outward at the ankles like grippers. His greatest feature was his ears: Large, cupped wings that tipped over halfway up, giving him a ridiculously medieval appearance, like a gryphon or some other imp. He was aptly named, this lord of Mischief.

Loki and my border collie, Til

Loki had been adopted by friends of mine who had been through an agonizing loss of their longtime friend, that ache so well known by so many of us who live with dogs. Aiden was black and tan, but that was as far as the resemblance went. Aiden was born older, always dignified, an easy companion for a couple in their retirement years

Loki was a tightened spring. He was everywhere. His favorite habit was to jump in front of your feet and try to grab them. Sometimes he bit pretty hard. You couldn’t walk across the room without the black missile blocking you, attacking your ankles and threatening either bloody feet or a broken hip. He had a habit of curling his lips and savagely snapping at the air, as if he liked the sound of his teeth clicking together in some fantasy where he was eating the villains alive. (Click here to see how I fixed that.)

He didn’t seem to know his name. He had no concept of coming when called. He pulled so hard on the leash that your shoulder would hurt for days. He was reactive to traffic and afraid of cars driving past.

Loki was, in short, a disaster. By the time my friends called me, they had already discussed returning him to the shelter. It was tearing them up: They committed for life to their pets, but they knew they couldn’t live with him the way he was.

I covered a lot of Loki’s training in my blog. During the weeks that I had him, I grew to love the dog. He was gifted with the quick inherent genius of a real working canine. He loved to train. And train we did! I took him everywhere with me and put him through a rigorous daily regimen of reward-based activities.

He learned to come when called, how to not pull on the leash (we got rid of the retractable immediately), how to stay focused and calm in the house, how to stop using human feet for a chew toy, and he even started some agility training. He got along well with my dogs, behaving in a way that was appropriate and didn’t push their buttons. His owners did a great job of following his take-home instructions, and I received happy reports of how he could be trusted off-leash and had grown into a loved family member.

So when I got the call for a project in Detroit needing eight dogs for an ad shoot, Loki’s owner was the first person I got ahold of.

A dog who works on set has to have a few skills. The primary ones are that he must:

  • Be reliable off leash
  • Maintain focus on handler
  • Come when called
  • Stay on a mark

Other talents depend on the needs of each shoot, so can be adapted. Loki is a quick study and had already established a relationship with my six dogs that were already cast.

The scene required a lot of dog-to-dog interaction. It was a tall order, especially being filmed in a new location, a park in the city, with members of the public walking strange dogs past the set.

Loki worked for four hours that day and thanks to his participation, we were able to deliver everything the client asked for.

When the video comes out, I will be sure to post the link.

Congratulations to Loki, and big thanks to his family for their faithful follow-up training! It’s pretty amazing that in one year’s time, you were able to make such a difference in his life.

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Teaching Arthur the German Shepherd to Swim

I grew up in the far north of Michigan, surrounded by inland seas. One favorite activity is taking the dogs swimming. As a kid, I thought most dogs loved to chase sticks and swim and jump in the water. Boy, was I wrong. Some dogs are afraid of the water and some never really do learn to swim.

Arthur the German shepherd puppy is ten months old now and has been riddled with fear-related issues his entire life — so I guess it comes as no surprise that he is afraid of the water.

I at first thought he would just follow in the wake of Terrible Til, my border collie who is his idol. Til swims like he does everything else: At top speed and with seemingly boundless energy.

Alas, however, it was not to be. Arthur does, however, like to earn praise. He likes to jump and I have been coaxing him to try to catch a ball.

Therefore, we are slowly translating this into a lake activity. Arthur will swim one short paddle after the ball, but once his feet leave the bottom he gets really nervous and wants to turn back. If the ball floats out too far — forget it.

Therefore, we are taking it one step (or paddle) at a time… With a little help from Til and Allie the Jack Russell Terrier and Jack Johnson the longhaired chihuahua, and Jasper the Lab Mix. Este the Chihuahua can swim, she just prefers not to.

At some point, I will wade farther out into the lake, but Arthur is so tall now that his head reaches my waistline. So I will have to go out pretty deep to coax him in. My beach body isn’t ready for that just yet! Maybe when I take the horses up north….

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The One Thing You Aren’t Doing For Your Dog

The fact that I have a border collie will right away tell you something. My hands are full. On Wednesday and Thursday, we worked on a commercial ad. This involved a drive to Detroit — over an hour from me — and then working on set at a park by the Opera House and Tiger Stadium. (A subject for another blog.) After getting home, both days, he wanted to go for a run. So, we did. On Friday, he and his pals went swimming. Then he wanted to play frisbee. Yesterday, he went for a several-hour hike. On the way back, he wanted to swim in the river. When we got home, he wanted to take a walk. Then we played frisbee again.

The dog, named Til, is eight years old. Is he ever going to slow down? God I hope not! He keeps me moving.

But I usually am preoccupied by other stuff, so I don’t always have time to spend a whole day entertaining my canine. This has led me to think about the way dogs live, which Thoreau described as, “lives of quiet desperation.” Thoreau was talking about men, not dogs. But when it comes to dogs, I think the description nails it.

Lots of people approach me for help with their dog’s behavioral issues, and it turns out that the one thing most dogs are lacking is enrichment.

I offer loads of helpful tips to keep a canine occupied. There are stuffed Kongs and plenty of other interactive toys. And, not everyone has to live with a border collie. But it turns out that the one thing dogs most need, regardless of breed, is an activity that involves you. There is really no way around it. No chew toy or even a motion-generated treat dispenser is going to take the place of that hour walk in the park. Otherwise, it’s like plunking your two year old kid in front of a TV and expecting the cartoons to raise him.

Awhile back, I wrote a post about a ramble with your dog, which is one excellent way to fill the enrichment void in the lives of so many canine friends. If the weather is bad, there are creative indoor games you can do, like hide and seek or teaching complex behaviors that involve body space, like how to walk backwards up a flight of stairs.

I am as guilty as anyone. My dogs are well-behaved, so it’s easy for me to overlook them. If I tell them to go lie down, they will. But if I am typing away and my border collie creeps up and softly lays his head in my lap, he is sending me a message. Woe to the dogs who send this message in other ways, like eating your drywall or barking nonstop out in the yard.

Enrichment is the one thing, for people and animals, that lends to quality of life. It’s what time on earth is all about. By denying your dog the best part of life, you sell yourself short. The best thing about spending time with your dog is that the benefits go both ways.

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Clifford’s Library Visit in Diamondale: Merriment and Meat Market!

Taking a full grown horse into a library for a literacy program can be an all-encompassing prospect, especially when the horse is Clifford. He is busy. He must be watched or he tends to grab things off shelves or help himself to the refreshment table. Plus, there are the duties. Clifford performs tricks, signs his own biography, and poses for photos with every single person in the room.

Clifford is a rock star. I am the slave. I have to make sure everyone is safe. When posing him with really small children, I have to tell them where to stand, how to hold his halter to cue him to look at the camera, keep their hands out of his mouth, and keep them from going places where they risk their feet getting stepped on.

But I have to hand it to the staff at Diamondale Public Library. They get it done. I didn’t have to do anything. Plus, I almost got a date!

It didn’t take long for this crew to get the rhythm of our photo-posing system. One kid holds the halter. Additional kids, if there are any, hold the lead rope. That way everyone’s hands are occupied and they have a spot to stand.

One crew member stood behind the counter and sold books as Clifford signed them. One person took charge of posing kids with Clifford. All I had to do was take a bunch of pictures, and then go help him sign books when someone needed one.

While we were thus involved, one little boy asked me, “How old are you?”

There were about a hundred people present, coming and going, and they shouted laughter. “How old do you think?” I said.

“Uhmmm… Thirty-two?”

“I LOVE YOU!” I screeched. I ran at him and gave him a huge hug.

“Are you married?” he asked.

“No! Why? Are you available?”

Again, more laughter. I said, “Clifford and I have been together twenty-six years. He is the long term male in my life.”

Clifford and I have been to a lot of libraries over the years. But this group as much as any other totally got the gist of Clifford’s shtick. They just let him be himself and they really enjoyed him! We had a rollicking good time at this Library —  the Clifford way. Thanks to the staff at Dimondale Public Library for making this happen.

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Guardianship: The Truth Takes Courage

My ex husband surprised the heck out of me. We haven’t seen each other in over twelve years and we haven’t spoken. We parted on terms that were not friendly. But today, I received a letter from him about my sister, Amanda.

Amanda has Down syndrome.

For the past six years, since our father died, various siblings have abused her.

And they get away with it.

Part of the reason this happens is because those who know Amanda, and fully know the situation, do not want to get involved. We have relatives who see it happening but they say nothing. Because no one has the stones to call out my siblings, they feel free to have at it.

The other reason is that the law does not acknowledge the type of abuse Amanda suffers, which is an assault on her dignity, separation from loved ones, deception, and other insidious acts.

Amanda’s guardian parades her in front of me at family gatherings, but does not allow us any real quality time together. He helicopters over her, preventing her from making a move without his consent.

The question that always follows these details is, “Why?”

Why Amanda?

Why would anyone treat her this way?

I think with the guardian it began with good intentions. He didn’t know Amanda. He was suddenly thrown into this role with all this responsibility over a disabled person. He didn’t know how smart she was. She was disabled. That was all she knew. His world was turned upside down. I supported him as much as I could. But then I disagreed with one of his decisions, and all hell broke loose. I was insubordinate. He has since found out exactly how insubordinate I am. But he makes Amanda pay for it. He is attempting to beat us into submission using punishment, the old school way for those who don’t know other alternatives to problem-solving — or maybe don’t care. It has become a snowball — the angrier I get, the more he grinds down on Amanda, and the more she suffers, the angrier I get.

I’ve tried reasoning with that one but logic is out the window. He is under the influence of too many mean people.

Our siblings are crazy-makers. I doubt anyone would be able to run this gauntlet of viciousness, deceit, and control without going a little mad.

But Amanda, although shaken by these experiences, marches on.

And she forgives them all.

And still loves them all.

Friends and relatives see this happening to Amanda and they say nothing. Part of the reason they don’t get involved is due to vicious backlash.

One extended family member came forward not long ago and tried to bring some peace to the situation. He was verbally bashed by so many siblings that he backed off.

After all, who needs that?

Amanda misses out on a lot of social opportunities due to the weirdness of the guardianship situation, and the way she is kept in a virtual strait jacket. Relatives who could call her, don’t. They don’t want to deal with it. This included our brother Jon. Amanda missed out on a lot of conversations with him, due to her guardian’s issues.

There are others, too, who stay away for the same reason. I could say it is their loss, but actually it poses a tremendous loss for Amanda. Jon is now gone forever. So I guess the guardian wins?

Considering the circumstances, therefore, I am really impressed by my ex husband’s bravery. He would agree that I never thought of him as particularly brave. Smart, yes. Funny, yes. We shared a pretty long history together — 12 years — before things went south. During those years, as his letter pointed out, he spent a lot of time with Amanda. The two of them bonded.

His letter is an affidavit for me to submit when I file the next petition for Amanda. I won’t go into the ridiculousness of how difficult it is to get a ruling against a guardian, even when you just want to see a movie with the ward, who happens to be your sister!

But it helps, at least in terms of moral support, to have someone who will speak the simple truth.

I had other friends and relatives submit letters to the court in the past, but Bruce’s is especially important because he actually lived with Amanda and me, for days and weeks and months at a time, for over a decade.

He wrote facts the siblings don’t want the court to know. Among other things, he wrote:

  • That I was Amanda’s favorite sibling and she preferred time with me even over those closer to her in age.
  • That while she stayed with us, I put her on a diet and exercise program, and I handled it with care and patience.
  • That I took her to the doctor.
  • That I was instrumental in helping her learn to read and write.

There is so much more. He said that I would be an exceptional guardian, and he pointed out many reasons why.

The thing that makes this most touching is not only that Bruce and I have been estranged for a while, but because he has chosen to maintain relationships with the part of my family that despises me. He is sure to receive some heat for this decision. And he knows full well how bad they are.

This is a great example of one person who has seen a bad situation, and did what he could to change it, and who spoke the truth, consequences be damned, because it is the right thing to do.

I wish everyone had this kind of courage.

“Our lives begin to end the day we become silent about things that matter.” – Martin Luther King, Jr

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Amanda And The Judge

Today is important because on this day in 2013, my sister Amanda had to go before a judge and say who she wanted as guardian. Amanda has Down syndrome. At that time, she was in her early forties. Even though I had not filed for guardianship, unbeknownst to me, she asked for me. It followed a bitter dispute between two siblings, the oldest sister and second oldest brother, after our dad died about 7 weeks prior. This date is forever burned into my calendar as the day Amanda was treated, and indeed even told, that she was part of the estate.

That was a good judge. At least she met Amanda in person and gave her a chance to speak.

It is more than the following two have done.

During the weeks prior to that 2013 hearing, the sister Robin was awarded temporary guardianship. She worked long days, leaving Amanda alone at an isolated location in the woods. Amanda had never lived alone. She was racked with grief over our father’s death, scared, and terribly depressed. I would go and pick Amanda up every day and we hung out together. We went to the beach (where she performed her inspired version of the macarena — sorry about the music — YouTube’s choice, not mine). We played with the dogs and took them for walks. We went to the movies. One day, I was late bringing her home for dinner and Robin called the police, telling them I had kidnapped my sister.

The police came to Robin’s house and interviewed Amanda, asking where she had been that day. She explained to the officer that we had gone to the movies, that we had walked down to the Soo Locks, and gone for pizza.

The officer was polite, but the encounter terrified Amanda.

When the police officer called me, he explained that if I took Amanda anywhere again, the temporary guardian could have me arrested.

I was no longer allowed to go and get Amanda during the day. Amanda said Robin told her, “I forbid you to go to the movies!”

Yes, this is true, and it is every bit as ridiculous and abusive as it sounds.

This was my first inkling that something was terribly wrong with the concept of guardianship.

During those weeks, Amanda and I wrote our award-winning book, “The North Side of Down.” The book is about Amanda’s and my experience growing up in a small town in Northern Michigan, what it was like to have Down syndrome, and what it was like when siblings went to war over her.

Now, it is happening to us again! It’s like a rerun of the worst episode in your lifetime series. Because Some People Never Learn just by watching the ugly acts of others — they gotta try it out for themselves. Our current imitator is Ted — Another rabid sibling, coronated as guardian, apparently drunk with power, forbidding Amanda to go to the movies with me!

Since that day in 2013, I have been immersed in vicious battles revolving around Amanda’s best interests. I have been accused of every heinous thing imaginable. I have had death threats. I have had personal belongings stolen. I have been slandered. One sister, Raechel, attacked me at our oldest brother’s funeral as I stood with my arm around Amanda, trying to comfort her, telling Ted we just wanted to go to the movies. Raechel grabbed me and started trying to yank me away from Amanda! She is the one who stalks me on social media and contacts people who support me, telling them horrendous lies. 

She wants to make this look like a family dispute. It isn’t. It is a human rights issue.

This is about Amanda. It is not about me.

I don’t want to get too caught up in the crazy. Siblings will try to muddy this up. The fact is actually pretty simple. Amanda is an adult. She has no problem communicating. She has an emotional IQ equal — or probably superior — to any average person. She should not be restricted from seeing her loved ones, whether the guardian likes them or not.

Thousands of people are living in similar guardianship situations — guardians who are given carte blanche and go overboard with control. Some of them are exploiting the ward for money. Others are immersed in family politics. Still others just enjoy the power trip. But nothing can justify this violation of a person’s civil rights. 

Even celebrities have experienced this kind of overzealous control by someone who kept them away from friends and family members. They include Peter Falk, Brian Wilson, Tim Conway and Doris Day.

No one should have the right to tell Amanda she cannot see a movie with me. NO ONE.

I have endured all this for Amanda’s sake, because even though she has almost no legal rights, she has the moral right to live as a human being. She should have the right to say who she wants to live with, and where. She should have the right to say who she would like to visit. After all, it is about her life, her personal history, and her relationships.

My relationships with all my other siblings, due to this dispute, are now shattered and will never be the same. And it is just because I disagreed with treating Amanda as part of the estate.

There are those who disapprove of how loud I have been about this. There are people who look down on me. There are those who don’t talk to me anymore. That is their choice. And for every one of them, there are two, or maybe three, or four or five, who silently think I am right. Those who have had the courage to come forward and speak out for Amanda are swiftly beaten into virtual submission by my aggressive siblings. 

They try to cover the truth with nastiness… But the truth keeps on eking out around the edges.

I am not afraid to say it.

My priority, first and foremost, is and has been Amanda. Everyone else comes after her. And, this is not going to be a secret. I refuse to protect people who mistreat her. I will not do it. It may not be PC to shine a light on family matters. But this is where awareness starts. And awareness is the only way to make a change.

May our next judge have better eyes and a caring heart.

Posted in abuse, amanda, down syndrome, down's, down's syndrome, families, family, guardianship, The North Side of Down | Tagged , , | 2 Comments