Why I Am Voting For Bernie Sanders

Our Crew

I am voting for Bernie Sanders in the upcoming Iowa Caucus because I am wiped out. I am so freaking tired I am willing to publicly admit I can't keep doing this. I need help, and I need it to be real, substantial help, not just an offer of prayer on my behalf or a word of encouragement.

My family may be a tad bit unique in our life struggle, but I do not believe we are that far from the norm. I think we are one family in a large silent and suffering nation of families on the verge of crisis.

 Rob and I are responsible for 3 generations of our family with special needs. Our elderly parents with physical and mental disabilities, our 3 young adult children who each have Usher Syndrome, which causes hearing loss from birth and gradual vision loss, and our granddaughter who has autism. Rob and I are walking, talking encyclopedias on the emotional, financial and physical sacrifices that must be made to meet the needs of people who can't take care of themselves. We are constantly researching resources and treatments, trying to help our loved ones have decent qualities of life. Rob and I do not enjoy financial security ourselves because all of our resources go to keeping our fragile family ship afloat on the wicked seas of ever-shrinking federal and state programs for the poor and disabled.

I laughed so hard a few months ago when presidential candidate Jeb Bush suggested the way to improve the economy was for people to work more hours. Um, Mr. Bush, can I talk to you for a minute? Yeah, we need to discuss how Rob and I are supposed to work more than our full-time jobs, plus take care of the 7 people who are doing the best they can with what God gave them. You cannot accuse Rob or I of being slackers. We put ourselves through college by working, going to school and raising a family at the same time. The only official vacation we have ever taken was 23 years ago, when a charity for special needs children gave us the gift of a 5 day trip to Disney World. You know your family is officially under stress when strangers are willing to pay for you to meet Mickey Mouse.

I am voting for Bernie Sanders for President of the United States of America because he is the only politician I have ever heard who acknowledges that social and health care programs for the disabled and disadvantaged are necessary. As the Bible says, there will always be the poor among us. There will always be people born with special needs, there will always be illness, car accidents and random things that happen to good people everywhere. What America desperately needs now is politicians who understand this fact of life and are willing to act on it.

I hope you and your family enjoy lifetimes of excellent physical and mental health. I also hope that if you don't have that gift, there are supports to help you. Our family is doing everything we can to ensure you will have a safe place to land in the event of hardship. Won't you do the same for your fellow man? 

Bowling Adventures

 It seemed so simple in my head. An afternoon at the local bowling alley. Not being familiar with bowling beyond the occasional bad date as a teenager, I had no idea that Saturdays are the big bowling leagues day. I also had no idea that just randomly showing up at a bowling alley on Saturday without a lane reserved, is a fool-hardy thing to do.

After wrangling my parents from the nursing home and convincing Jennifer, Elise, Grandbaby Eleanor and Elise's boyfriend Pat to come along for the fun! fun! fun! no way were Rob and I going to cancel our afternoon of family togetherness just because we had to crawl over the laps of the people in the neighboring lane to get to our seats. We are friendly people, not opposed to sharing space for limited amounts of time. It's fine, really. It didn't matter we couldn't hear each other over the thumping music, balls smashing and people talking. This is bowling in America and bowling is fun, dang nabbit.   

As everyone began taking their turns bowling, it became painfully obvious we aren't very good at this game. We had put up the child bumpers for the benefit of Grandbaby Eleanor and left them up because the rest of us needed them if we ever hoped to throw anything other than gutter balls. What really turned the afternoon from a chaotic adventure in humanity, into an endurance race of our good humor, was this innocent looking contraption:

A bowling ramp

Grandbaby Eleanor uses a bowling ramp all the time when she goes bowling with her young adult friends from The Village (a program for children with special needs.) You set the ball at the top of the ramp and push it off, thereby easing the hardship of swinging the heavy ball. It is genius in my opinion. Eleanor used it when it was her turn with no problem. She needed Pat to help her carry the heavy ball and her aunt Jennifer to help block out the other bowlers, but she did just fine. Autism makes crowds and noise super hard, so it was a major thing for Eleanor to handle it so well. Rob and I did silent high fives ourselves. We expected if there was going to be trouble, it would be for Eleanor. Not so, she was a champ.

Pat, Eleanor, Jennifer and the bowling ramp

High fives and congratulations all around 

Grandbaby Eleanor, her mom Elise and Pat

Aren't they cute? 

 After Jennifer, Eleanor, Elise, and Pat bowled, it was Rob's and then my turn. Rob and I used the bowling ramp because Rob couldn't find a ball that fit his large fingers and I didn't care to throw my back out swinging a ball for 10 frames. Being close to 50 years old and not in world class shape, makes me think, "Is this worth a trip to the ER, pain killers and meeting my insurance deductible?" I am telling you, bowling ramps are one sweet item. I actually got two strikes off the thing and I don't know jack about bowling. 

Rob doing his bowling swagger 

Jennifer showing how it is done. 

My parents finished out the bowling line up. What Rob and I didn't predict, is how offensive Ralph and Claudia would find the bowling ramp. Where Rob and I were fine with using it, my folks had major issues with it. They knew how to bowl and did not need any help from a silly bowling ramp, thank-you-very-much. The thing about it is that Ralph is in his early 80's, Claudia is in her 70's and I did not want to see either of them hurt themselves throwing balls. So as they voiced their resistance, I pulled my Daughter-Knows-Best card and told them that bowling without the ramp was not an option. Ramp or nothing, so get over it. I thought that would be the end of it. It should have been, right? 

No.
It was not the end.

I had every right to set the rules of safety, but my parents didn't have to like it. I quickly realized I was in over my head with them after the first frame of bowling. Claudia, then Ralph argued they didn't need the bowling ramp, I replied they did. They each threw two balls using the dreadful ramp, every time making the same complaint and argument. The math of it looks like this:

Claudia - 2 balls thrown + 2 complaints = 4 complaints per frame.
Ralph - 2 balls thrown + 2 complaints = 4 complaints per frame.
10 frames x 4 complaints per frame = 40 complaints per person.
Ralph 40 complaints + Claudia 40 complaints = 80 complaints in 2 1/2 hours of bowling fun.

The thing that I am constantly reminded of by my folks, is that once they get an idea in their head, there is no moving them off of it. They may go along with another approach, but that doesn't mean they agree. It just means they realize they can't win that battle. In the end, they WILL win the war. I didn't know what the big deal was, Claudia was beating all of us. How could the winner complain that the game rigged? If it was rigged, it was to her favor. 

The good news is Grandbaby Eleanor had a stellar time at the bowling alley and we all left in one exhausted bunch. On the way home, I told Ralph and Claudia that we wouldn't go bowling again because I had no intention of listening to that level of whining ever again. If you don't know my parents, you might think I was harsh with them. If you do know my parents, you know the best way to communicate with them is 100% straight forward, with no fluffing the edges. The funniest part of our conversation was my parents response to my declaration of  "Never Again!" They totally agreed with me. As Claudia put it so well, "Miniature golf is so much better anyway."

Amen, Momma.
A-men.

My mother, Claudia getting the job done

My father Ralph, and mother, Claudia waiting their turns to bowl.

No More Trash Bags

I've been searching for a while to find a way to help readers who tell me that after reading my book, they are touched and want to do something to help children in foster care. It has taken a while, but I found a way. 

Together We Rise is a non-profit organization that improves the lives of kids in foster care. They do fundraising to purchase suitcases so no foster care kid has to move their belongings in trash bags, and they buy bikes so foster kids can know the pride of ownership. I am sponsoring a 15 day challenge to raise $1000. to purchase suitcases for foster kids.

As you know from my book, this is a reality that is near to my heart.

"That summer a new social worker showed up and instead of talking to us, he told us to gather our clothes and put them in his car. We didn't have suitcases so our clothes were folded by Dorothy (our foster mother) and put into brown paper grocery sacks. Besides our clothes, we were told to choose only three personal things to take, nothing else. The rest of our belongings were to stay with the other foster kids." 

The three things I picked to take were a record and storybook combo from the Disney movie "Bedknobs and Broomsticks," a hand-me-down white vinyl purse my mother gave me that had their address printed on the inside flap, and my beloved Mrs. Beasley doll with granny glasses, a polka dotted dress and a string in her side that made her talk when I pulled it. That was it. That was the sum of the first 7 years of my life, in a paper bag that my foster mother saved to put the household trash in. 

Please consider giving a gift to purchase a suitcase for a foster child who needs to know they are loved and not disposable like the trash. 

Go to this link to make your donation. My brother and I and thousands of other foster kids who know what it feels like to carry your life in a trash bag, thank you.

Together We Rise Suitcases 

http://www.togetherwerise.org/fundraise/ezraandhadassah.blogspot.com

A New Review Rolls In

The Association for Mormon Letters, which is a group of academic, smart-type folks in the Mormon community, reviewed my book.

Here is the link to their site and my review.

Association for Mormon Letters

Oh heck, I'm just going to copy it here, too.
I'm glad the reviewer made a point of commenting on the one thing I have run into over and over with my book, and can't fix. People are reluctant to read it because it might be sad. Which it is.
But it is also funny, hopeful and in the end, peaceful.
What else can I say?

Anyway, here is what the Association for Mormon Letters had to say:

Young, “Ezra and Hadassah, a Portrait of American Royalty” (reviewed by Jaymie Reynolds)

Review
======

Title: Ezra and Hadassah, a Portrait of American Royalty
Author:Heather Young
Publisher: CreateSpace (https://www.createspace.com/4522786)
Genre: Non-fiction
Year: 2013
Pages: 240
Binding: Paperback
ISBN-13: 9781494311162
Price: $14.00 (Kindle edition also available)

Reviewed by Jaymie Reynolds for the Association for Mormon Letters

“My first memory of life doesn’t begin with my biological parents. My memory begins at the foster home … ” A somewhat innocuous beginning to a story riddled with hard topics. As a reviewer, I almost passed this book by. I was rather hesitant to read a book that centered around the content I knew this book contained. Stories of child abuse, even when told by a survivor of such, are rarely uplifting or positive in any way. They may be cathartic, but they are, more often, rooted in anger and frustration that passes easily from the words of the author to the heart of the reader. That being said, Heather Young’s book, “Ezra and Hadassah, a Portrait of American Royalty,” is a surprising find.

Within the pages of this book, one finds the expected elements of a horrible, abuse-filled childhood. What is missing from the pages for the most part is the vituperative anger one so often hears in this type of memoir. Young’s voice is, in general, pragmatic and, at times, even positive. She strikes a nice balance in telling her tale — giving enough detail to help readers understand and sympathize, while avoiding the graphic descriptions so common in this field of content. Child abuse is a tragic reality in the world today, and Young promotes awareness of it in a way that is heartfelt and non-abrasive.

Young and her brother are the key players within this book. Somehow, despite all odds, each child grew into an adult who found something better than they’d known. Each of them found peace in their own way. Young is very honest about both of their journeys and the steps that led them to their adult selves. Surprisingly, even the most painful parts of Young’s work are presented in a way that still seems to encapsulate a glimmer of hope. This book is lacking the overall negative mood that so many of its contemporaries encapsulate. That’s not to say Young glosses over critical details or tries to pretty up ideas and events that cannot be made beautiful regardless of how they’re presented; rather, she manages to discuss difficult things in a way that invites readers to empathize and want to read on.

The target audience for this novel is at once both extremely broad and exceptionally narrow. Young doesn’t seem to be speaking to a specific demographic. Child abuse and systematic failures to protect little ones are topics that crave awareness within all venues. At this time in history, advocacy is not limited to specific readers. However, the audience that will seek out such writing may be more narrow, especially within the LDS community. The topics that are built into Young’s life experience are challenging to digest, and many may choose to avoid related works in order to focus on things they find joy in.

Latter-day Saint readers will likely be comforted at Young’s tone. Her feelings about her experiences and their aftereffects are clear, but she avoids most of the verbal landmines that may rile or upset readers. These readers may be somewhat startled to find that this story is presented in a way that invites them to support the author and hope for her success rather than in a way that would prompt them to feel attacked. Even though the role of some members of The Church of Jesus Christ of Latter-day Saints factors negatively in Young’s life, she is fair in her presentation of both the positive and negative examples she’s seen within the Church. She presents her tale in a way that recognizes the fallacy of human nature and the infinite good that can as easily be found within the hearts of other people all within one community or religion.

While Latter-day Saint readers will likely be pleasantly surprised at how Young presents her story, there are a few small elements that may be uncomfortable for some readers. Aside from the inherent painfulness of the topics Young has been forced to confront in her life, she does use a few, small swear words in her descriptions. Within context and based on her experiences, these words do not detract from her work, but they may upset sensitive readers. In addition, some LDS readers may be uncomfortable with small discrepancies as Young explains basic LDS doctrines. Overall, Young does a fantastic job giving LDS and non-LDS readers sufficient, accurate details in order to understand religious and doctrinal references. One that readers may take exception to, however, is Young’s explanation of the Word of Wisdom. This elucidation comes as Young tells of buying marijuana as a means of helping her terminally ill brother with chronic pain. She explains that she knew he would not smoke it because the Word of Wisdom “forbids smoking, drinking coffee, caffeinated tea, and alcohol.” She fails to mention illegal drugs.

In spite of small discomforts and inherently painful topic matter, taken as a whole, Young’s memoir is both well-written and is smoothly read. Perhaps what makes Young’s offering so valuable to readers is the triumph that is found in the ashes of many fiery challenges. These pages are riddled with sorrow and pain and still manage to convey hope and pull readers along to a place of peace and victory. As one who picked up this book with some hesitation, I would not hesitate to recommend that Young’s tale be added to the field where advocacy and change grow. Ezra and Hadassah is not an easy read, but it is a positive one.

00

Why Social Services Matter

Stanfield Manor - Where the magic happens

The photo above of Stanfield Manor brings back so many good memories to me. This is the federally and state-funded low-income apartment building that my brother, Rex lived in the last 5 years of his life. For those 5 years, Rex had a safe, secure place to lay his head at night and a community of people he delighted in serving. 

The injustices of being born with intellectual disabilities that automatically render someone incapable of competing in the working world, tied to the reality that not everyone is born into a magically wealthy, happy home, creates a whole population of people like my brother.  

As you read my book, "Ezra and Hadassah: A Portrait of American Royalty," you learned that Rex didn't have the gift of a loved childhood. He suffered in ways that I struggled to describe while writing our story. The greatest relief I experienced as Rex's sister was the day he moved into this apartment building and I knew for the first time in his whole life, he was safe.

Rex had disabilities that prevented him from having meaningful employment. He couldn't financially provide for himself without help. For every post I read on Facebook decrying the evils of healthy people who refuse to work living on the welfare dole, I want to reach out and smack them upside their heads with a case of my books. Dang, do that many people not know someone like my brother? 

Yes, my brother was homeless, he couldn't work. Yes, he lived in a various homeless shelters because he had no home. No, he wasn't a drug addict, an alcoholic or a criminal. He was like  many people who life had crapped on so spectacularly that he had no option but to rely on the generosity of others who had been given much more.

While living in Stanfield Manor, Rex made the most of every opportunity he had. He helped his elderly neighbors take out their trash. He moved their furniture for them. He shared his meager $90 a month in food stamp provisions with anyone who asked. He was willing to help anyone, anywhere, at any time. His generosity of spirit wasn't always returned in kind. He had his checkbook stolen and almost died from a particularly cruel assault with a deadly weapon. 

Make no mistake, Rex valued his home in Stanfield Manor. When Rob and I had to tell him he could no longer live there, it broke Rex's heart. He did not want to leave his friends, his neighbors, the people he felt very strongly that God had asked him to serve. He was on a mission to ease the burdens of the downtrodden wherever he found them.

 I cried the day Rob and I cleaned out Rex's apartment. I knew he wouldn't be coming back. His doctors gave him less than 6 months to live. As Rex's neighbors floated by his doorway, stopping to inquire on his health and future, I had to repeat his diagnosis over and over.
Incurable brain tumor.
Invasive. 

Hospice.
Coming to live with us.
Death.

The only comfort I had that day was in doing the one act I knew Rex would approve of. As each person approached the apartment, I asked what they could use.
"Would like Rex's couch? He would like you to have it."
"Do you need more bowls or silverware? How about this pot?"
"This is Rex's favorite plant. Would you like to have it?"

On and on the day went, a steady stream of remembrances of beloved items, and confidence knowing they were going to grateful new owners. By the time we finished, Rex's apartment was bare, only his clothes, a box of personal items and his computer tucked in the back seat of our car ready to make their move to a new home.

I cannot help but be emotional when I read of funding being cut to low-income housing, health care for the poor, or food support programs. Every dollar taken away from helping people in desperate straights, for whatever reason their circumstance, all I can think about is my beloved brother and the last 5 years of his life. The happiest, secure years of his life. He lived on less than $500 a month, $89 of that going for rent on his apartment at Stanfield Manor. He finally had a home, a place where he belonged and was loved. Isn't that something that everyone deserves? 

Why is it so hard to be around mentally ill people?

All of us in 2012. 

Once every so often, the stars align perfectly and all your deepest, darkest questions are answered. That is exactly how I felt when I stumbled upon the article “Whyis it so hard to be around mentally ill people?” by Kevin Turnquist,M.D.  

Dr. Turnquist’s audience for his article is his peers, other psychiatrists. As I read it, I gained a new perspective on how mental health services are provided in the US (like why it is impossibly hard to get an appointment with a psychiatrist in the first place.)  I also received new insight as to the struggles my husband Rob and I have had in trying to provide care for my mentally ill parents and mother-in-law.

First of all,  Dr. Turnquist’s and I aren’t writing about the many people who suffer from mental illnesses who are able to lead functioning and happy lives. We are talking about the most severely impaired people who are involved in intensive treatment or require supervision to get through their days. My parents and mother-in-law fall into that specialized category, which means Rob and I deal with a higher level of shizz on a regular basis. It can be exhausting and that is why this article is so important to me.

Why the Professional Help Isn’t There:

Dr. Turnquist’s makes an interesting point:

“The mental health field is also qualitatively different from other medical disciplines… In nearly every other field it is the best Doctors that care for the sickest patients. Even when professionals in these other area move up their systems hierarchies into more administrative jobs, they typically retain a fair amount of direct patient care in their work lives. Things are very different in mental health though. In our business the care of the most severely ill patients typically falls to physicians and other professionals with the least amount of training and experience.”

What??

So when my loved one gets admitted into a mental health hospital, they aren’t treated by the best, most senior psychiatrist in the joint? WHY NOT? 

Because:
“…There is no denying that in our field there is a real aversion to caring for severely mentally ill people. Psychiatry is a peculiar little corner of medicine and the care of the sickest patients is, in turn, a peculiar little corner of psychiatry. In the mental health field much of the care of the sickest people falls on people who have little interest or training in providing it. And when doctors or other professionals are able to move into an administrative position it’s extremely common to see them completely sever all ties with patients. In our field if you’re regarded as really ‘high ranking,’ the proof is that you no longer have to take care of patients at all.”

It is ridiculous to think of ICU patients being taken care of by the most inexperienced physicians, but that is the reality in mental health care. So many instances where I have dealt with craziness in hospitals and mental health clinic systems now make perfect sense. I had assumed I was dealing with the best. Now I know I every time my loved ones are under the care of a mental health care professional, they are getting exactly the opposite. It sucks to be mentally ill and reliant on public health care services. Welcome to America. 

It’s Not Just Hard to get a Psychiatrist; it’s hard on Family and Friends, too

“Even people that know and love the client will often try to see as little of them as possible…It’s very rare to see someone with a severe mental illness maintain long term friendships that were formed prior to the onset of their disorder. Even family members may sever ties with the clients completely over time.”

Rob and I have our times with our 3 elderly amigos where we know we need a short break from their specialness. We regularly thank G_d for the blessing of a nearby nursing home that takes care of the day-to-day needs of our parents. We have no idea how we could possibly take care of them, our children and our own lives if it wasn’t for the nursing home staff. They are not mental health professionals, but the workers do naturally possess the skills needed to handle our loved ones.

Things that make it hard

“The nature of mental illness commonly leads to the loss of empathy for others, increased self-centeredness and a near-complete disregard for social conventions. When unspoken rules around bathing, dressing, conversation or intruding on the personal space of others are violated, it makes people feel very uncomfortable. The desire to flee the presence of people that don’t act like other people can be very powerful.”

Ain’t that the truth? Some of my biggest struggles in life have been in dealing with my loved ones problems of not bathing, dirty clothes and weird conversations in public. And a whole bunch of other stuff that I don’t have the energy to list here. Just know that the dirty clothes thing is huge, huge, huge for me.

“The things mentally ill people need and desire are really no different than the needs that all of us have. They want decent housing that they can afford, good food to eat, some meaningful activities, a sense of belonging, and a realistic hope for a better future. All of these things are, unfortunately, scare commodities in our mental health systems. Instead we offer them the things that are suited to the needs of administrators, politicians, and other policy makers. “

And trust me; I am NOT happy about this reality. I long for the day when we have politicians and people in power who actually “get it” in terms of what severely mentally ill people need to function in society.

“There is never a shortage of suggestions about how to live their life differently – it’s the things that they need to accomplish those goals that are in such short supply. If case managers and other professionals had an abundance of enriched living environments that provided work, food, and a modicum of supervision it would be much less painful to face their clients each day. “

And it would bring peace to families to know that their loved ones have a quality of life worthy of humanity.

What it takes to Do This Work

Humor

“When one observes really good mental health professionals several common traits are often seen, regardless of the discipline that the person works in. Some would say that a robust- even slightly ‘sick’ sense of humor – may be the single most important factor that a mental health worker can possess. Laughter has all sorts of effects on the nervous system that can counteract the biological results of ongoing stress. A playful quality in one’s work also helps us to keep some perspective on situations that might otherwise feel overwhelmingly hopeless.”

Yes, Yes, Yes.  I only count as my closest friends those who share my twisted humor and who can jump in and join my darkest gallows humor to help me laugh instead of cry. Thankfully, I have friends only a phone call away and I always have Rob nearby to drag into the Pit of Crassness as needed. Bring on the wildly inappropriate jokes, please. It really helps on the bad days.

“Clients appreciate being able to laugh on occasion too. Who wants to have people constantly peering at them with an eye to determine what is wrong? And some of the things that mentally ill people do, say, or believe are just flat out funny. To feel guilty about seeing the humor in the work we do can be incapacitating. “

Holy cow, isn’t that the truth? Some of the best family stories we have are about funny stuff our parents have said or did. I think it is a gift from the universe to help ease the burden of the undeniably heavy stuff.

Perspective

“Long-time staff workers have usually developed an ability to remember whose life it is that they’re dealing with. Clients ultimately are seen as maintaining responsibility for their own lives and workers are responsible simply for doing their best to help within their own limitations.”

Rob and I have worked hard to develop the ability to separate ourselves from our parents so that we can stand next to them without embarrassment, worrying that their behavior is a reflection on us. Some days are better than others, depending on how ‘out there’ they are that day.

Engagement

“The best mental health workers never lose their sense of curiosity and wonderment. No other field provides us with so much information about what humans are really about. We are allowed to see the best and the worst of humanity- and everything in between.”

Amen and amen. Although we are the first to admit our parent’s mental health problems challenge us in ways that tax us, Rob and I agree that from them, we have also learned so much about what is right and good and lovely in the world.

The Future of our mental health system

“It’s a very touchy subject but the other obvious conclusion is that, at an administrative level, something must be done to counter the powerful tendency to distance one’s self from mentally ill people. Who in the their right mind would design a mental health system in which the main decisions are made by people who have no real knowledge of what it’s like to be mentally ill these days? Requiring that administrators be well trained and experienced in the care of mentally ill people just won’t happen. But it’s not too much to ask that everyone spends some time working in direct contact with clients, just so they don’t lose sight of what this is all supposed to be about.

It’s reasonable for taxpayers to demand that each of us that work in publicly funded mental health systems spend at least a few hours per week in direct service to clients. If dishing up meals or driving people to appointments is the best we can do, we should at least do that.”

The enlarging gap between severely mentally ill people, their loved ones and the people in charge of the system that cares for them, is going to continue to widen without making real, concrete changes to how care is provided. And it should start by insisting the best health care workers show up to provide the care.

Happy Anniversary!

Happy Anniversary!

51 Times Around the Calendar, 

Still Happy Together

I don't know all the ingredients for Ralph and Claudia's special kind of magic, to be honest I've never seen anyone quite like these two peas in a pod. 

I am just happy they found each other and that Ezra and I came along for their trip. It has been quite a fantastic ride 

so far, wouldn't you agree?