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Medically Fragile, Going Homeless, and a Broken System

August 10, 2017

Sarah Allen and her medically fragile son Aidan struggle with a state Medicaid system that refuses to obey federal law to provide adequate in-home nursing care for him.

But that pales in comparison to her larger worry: Sarah and Aidan will be without a home and separated in a matter of weeks.

Its wasn’t supposed to go this way. Sarah was happily married and pregnant. Now, she will need to find a shelter somewhere. Her son may become a ward of the state and placed in a nursing facility. They’re hoping for a miracle.

©  2017 Robin Rayne Nelson/ZUMA Press  

All rights reserved

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Sarah Allen gets her son’s meals primed in a pump that delivers a constant flow of the liquid directly into his stomach though a ‘G-tube.’

Marietta, Georgia — Sarah Allen primed the pump for her toddler son Aidan’s gastrostomy tube.  She tried to stay focused. She couldn’t let her anxiety and fear get the better of her, even though the reality of losing what precious little she had – including her son – occupied her mind relentlessly. 

In six weeks, Sarah and her medically fragile child will be homeless and likely be torn apart.

The now-single mom has few resources and no place to go once she’s forced to leave the small house where they’ve been living for the past nine months.  While Sarah could find a women’s shelter, her son’s complex medical condition would be too much of a liability for a shelter to accommodate. Aidan would be likely become a ward of the state and be relocated to foster care or a nursing home. 

 

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Aidan’s daily meals and medications are liquid and constantly flowing from this bag into his stomach.

Aidan was born with cerebral palsy. He has a number of neurological and developmental issues due to a cytomegalovirus, (CMV) a common but not well-recognized virus that can be devastating to unborn children. He is nonverbal and unable to crawl or walk. His vision is limited. He has difficulty swallowing. He requires high-calorie liquid nourishment through a portable pump and tube that leads directly into his stomach, feeding him continuously for 20 hours a day.

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Sarah and her toddler son laugh and giggle as they get ready for the day

Aidan’s complex medical needs require 24-hour care and supervision. Though not a trained  nurse, Sarah is Aidan’s primary caregiver. Other than brief respites when a registered nurse or certified nurse assistant comes to their home to help, Sarah is constantly by Aidan’s side. 

It is Sarah’s full-time job, and one that she never leaves. It is a job that pays nothing, which means Sarah has no income. They live on food stamps and $860 a month in child support and Social Security benefits because of Aidan’s disability.

Before Aidan was born, Sarah married a man she thought she knew. She considered him to be her soul mate.  Sarah was working and looking forward to a happy family life together. “Things were perfect,” she recalled. Several months after their wedding, Sarah was pregnant, eagerly anticipating her role as a mother. After years growing up in an abusive, dysfunctional, drugs-and-alcohol drenched family, “I finally had my family,” she said.

That dream came to an abrupt detour when a doctor’s exam detected serious medical issues with their unborn son. Aidan was considered ‘high risk.’  

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Aidan lays in his mother’s lap as she cleans her son’s mouth with a glycerin swab. He is not allowed to eat anything by mouth.

“The perinatologist encouraged me to terminate my pregnancy. I was told he would likely not survive birth. If he did, he would be born deaf, blind and disabled.” Aidan would likely experience multiple seizures, the doctor told her. 

Sarah refused to terminate the pregnancy. “I had to give my son a chance at life,” she said. 

Aidan’s father left soon after that for job training in Germany. “He was supposed to come home in six weeks. He never did,” she said.  

Aidan was born with the umbilical cord around his neck. He has several brain malformations, with lesions and scars throughout. He suffered a stroke. He has enlarged ventricles, liver and spleen. He has hundreds of seizures every day and his vision is seriously impaired. He doesn’t crawl or walk, and is wheelchair dependent. He is non-verbal and eats with a G-tube throughout the day, she explained. 

Now 28 years old, abandoned by her husband and the life she thought she had — with a medically fragile infant who needed constant care — Sarah moved from place to place and tried to get on with her life. 

“I knew I had to find a way to support us. I didn’t have anyone to watch him, so working a regular job wasn’t possible. I had to be able to drop what I was doing at any time to tend to his seizures so working specific hours from home online wouldn’t work. SSI takes almost 40% of your income anyway, so the money wouldn’t have been much.”

“I came to the conclusion that being an online student would not only enable me to gain an education, but I could also use the student loans for living expenses,” she explained. 
Sarah thought it was a good idea at first. 

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Exhausted from lack of sleep, Sarah tries to rest on a sofa while keeping a close eye on Aidan. He can lay on his tummy but so far is unable to crawl.

“I was able to put down my books and tend to him when he needed it. But then my grades began to suffer. I failed a class. I wasn’t sleeping and it was taking its toll. In order to receive loans, you have to be a full time student. Being a full time student with a normal child is different because your child can go to daycare, a family member or a friend. They don’t need special training for their care. But being a parent to a medically fragile child and being in school full time is an entirely different story. Standard day cares won’t take him.”

There used to be daycare centers in Georgia for medically fragile children, staffed by registered nurses who could provide the required care while parents worked. Cuts in Medicaid funding caused those centers to close in 2015. 

Sarah applied for what is known as ‘Section 8’ public assistance housing but was turned away.  “There was at least a three-year waiting list,” Sarah recalled. “I understand. There are lots of handicapped people who need housing. I just wish these wait lists were a thing of the past.”

She met a man through an online dating service. As they talked over lunch, Sarah shared her story. “That relationship didn’t go anywhere, but he offered this house to me as a place for Aidan and me to live so wouldn’t go homeless,” she said. Small and clean, it was accessible by Aidan’s wheelchair and not far from a hospital.

“We had a home. I could take care of my son. We didn’t have much but we survived,” Sarah reflected.

Though Aidan’s doctor prescribed a consistent and sufficient level of in-home nursing as a medical necessity for Aidan, the Georgia Pediatric Program (GAPP) that manages that support consistently ignored those orders. That support is funded with Medicaid dollars.

“I fought and fought for it, but only received 8 hours per week. Sadly, the 6 nurses I went through in 4 months were no-show or very late for every shift,” she said.  “It became extremely stressful, inconvenient and time consuming to have to train a whole new nurse all over again. After joining a few Facebook support groups for special needs, I learned that’s sadly very common,” she continued.

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Aidan gets a workout on a large rubber ball as part of his weekly physical therapy.

Because of his cerebral palsy, Aidan is reliant upon assistive equipment. He receives weekly physical, occupational, and speech therapies through private companies who take Medicaid. 

“Sometimes he needs supplemental oxygen.  I always keep a suction machine and pulse oximeter nearby, just in case. He sleeps with me, or at least very close to me, because he requires monitoring 24 hours a day, seven days a week. I haven’t slept a full night since he was born. He feeds at a slow rate continuously because he can’t tolerate a lot of food in his stomach,” she explained

.Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Aidan is covered by Medicaid for medical bills and disability equipment. They receive EBT food stamps from the state.  Aidan’s special formula costs are covered by Medicaid.

But she is frustrated and angry with the state system that many observers say is woefully broken.

“I need help to care for Aidan. I’ve pleaded for more hours for nursing care. I can’t do it alone like I have been,” she added, noting that he own health is not good either. Sarah’s father died of congestive heart failure. Though she appears to be a vibrant and energetic young woman, Sarah was diagnosed with serious heart issues herself.  

Serving Aidan as his primary caregiver without adequate help is placing her physical and emotional health at risk and that affects Aidan as well, her doctor told her.

The program’s most recent review of Aidan’s case reduced his in-home care to eight hours a week.  

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Wearing a backpack with the ever-present pump and tube connect to Aidan, Sarah encourages her son to enjoy the specially-adapted swing at a nearby park.

“I guess they figure as long as I’m caring for Aidan, they don’t need to,” Sarah said. “I’m a full time nurse without a nursing license, keeping track, grinding up and administering all his medications and working 20 hours a day without income because that’s what my son needs. And the state agency that’s supposed to help simply won’t do what the laws say they must do.” 

“I’m wearing out. I’m performing nursing level care and it is very scary because I could mess up,” she added.

Children are entitled to receive care so that their medical condition does not deteriorate, notes Ruby Moore, director of the Georgia Advocacy Office.

“In-home skilled nursing services are one of the many federally mandated services that enable children to remain at home with their families thereby avoiding the risk of placement in an institution,” she said. 

“The Department of Community Health conducts periodic reviews of hours provided and regularly decreases hours of skilled nursing — contrary to doctor’s prescriptions, “she continued.  

“The arbitrary reduction of a child’s skilled nursing services puts the child at risk for unnecessary medical complications, including death or institutionalization,” she cautioned.

While families have the right to appeal the reduction of services, they often are not sucessful as they cannot afford a lawyer, she noted.  “In failing to provide children with the right to necessary medical care, the State is putting the children and the State of Georgia at risk,” she said. 

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Headed home after an afternoon outing at a park.

Children subject to these arbitrary decisions are at risk of becoming wards of the state or at risk of entering nursing facilities at government expense.  “As the state is liable for violating the rights of these children, Georgia is at risk for greater liability as a result of its implementation of these willful and irresponsible practices,” she continued.

Meanwhile, Sarah takes life day by day, entertaining her son as best she can with free trips to a local park where they could walk in the fresh air.  A television in the small living room pulls in a scratchy signal from one of the few broadcast stations in Atlanta. Sarah can’t afford to pay for cable television or internet. She’s built some of the furniture in the house herself. Sarah struggles with loneliness and isolation. She longs for friends she can “hang with, someone to just call up and talk,” she said. 

But even when  — or if – the state provides more hours for in-home care, Sarah can’t really leave for more than an hour or two at a time.

“Registered nurses and CNAs are not allowed to lift more than 40 pounds by themselves, so it takes two people,” she said. Sarah’s own heath problems are both a concern and restriction. 

Still, she tries to remain hopeful.

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Sarah tries to stay focused on her son’s care, though the two will soon be forced to leave their home. They will likely be separated.

“I am extremely thankful that we have a roof over our head.  But the owner needs to sell this place in a matter of weeks.  I don’t know where we will go. Maybe God will find a way to give us a home of our own, for the first time in both our lives.” 

“I still wake up with a smile on my face. I have a happy toddler to love for as long as I can,” she added.” I may not have him forever, but I want him to be happy for the time he is here. I want my son to know love and live in a home  — not an institution.”

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Sarah and Aidan share hugs on their front porch.

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Faces of the Waiver

July 11, 2017

Individuals with developmental disabilities depend on Medicaid waivers for any quality of life. Thousands in the U.S. are served by the waivers, but thousands more are on waiting lists. Proposed cuts and caps to Medicaid would be devastating for all of them.

By Kip Grosenick and Robin Rayne Nelson

©2017 ZUMA Press All Rights Reserved

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Comer, Georgia — Pam Walley knew it was bad news as soon as she heard the nurse’s cry from her daughter’s bedroom. 

“I think Callie’s leg is broken,” nurse Lori Cain said as she gripped Callie’s thigh with both hands, hoping to immobilize it. 

Pam rushed to her daughter’s bedside and frantically called 911 for an ambulance.  Pam knew by the look on her daughter’s face that her pain was excruciating.  “Your thigh isn’t supposed to be moving in two directions,” Pam recalled. The bone had apparently snapped as Lori was lifting Callie from her bed to get her dressed for a visit to a local swimming pool. 

“It wasn’t anyone’s fault, or anything specific that caused the break,” Pam explained later. “Callie has osteopenia that causes very brittle bones.” 

 Pam and her 22-year-old daughter live in a rural community outside Athens, Georgia with Pam’s husband Richard, who lives with a disability from an accident several years earlier. 

Faces of the Waiver:  Medicaid Waivers Provide a Lifeline for Those with Disabilities

While nurse Lori Cain holds Callie’s thigh to keep it immobilized after her femur snapped, Pam Walley calls for an ambulance to take Callie to the emergency room.

Faces of the Waiver:  Medicaid Waivers Provide a Lifeline for Those with Disabilities

Callie rests in the trauma room after being treated with morphine for her pain. Pam Walley listens as a nurse explains her care plan.

Callie recently finished high school and received her diploma, which she has displayed on her desk. In many ways, Callie is a typical young woman who enjoys manicures and the occasional bit of gossip about the other girls in her community. Pam is clearly proud of the fact that her daughter made it to the high school prom with a date: a typical high school activity made possible because her Medicaid-funded caregiver was present to provide the medical support she needed.

Callie uses gestures and her eyes to communicate. She was born with spastic cerebral palsy and epilepsy, and needs support in a number of areas of her life.  She is legally blind and uses a wheelchair.  

“Callie is the strongest, bravest person I have ever met in my life. I don’t think many tough, grown men could endure what she’s enduring,” Pam offered.

She is committed to giving her daughter the best life possible, as full and as meaningful as she can muster.  

 

Callie requires skilled nursing care at home, funded largely from a Medicaid waiver for individuals with developmental disabilities.

 Those funds may be in jeopardy if proposed cuts to Medicaid are approved in legislation currently under congressional consideration.  

 Pam’s anxiety is palpable as she considered what might have happened had she been by herself with Callie, without a nurse to help manage the broken leg situation. “It would have been disastrous,” she said. 

 “The Medicaid waiver gives my daughter a far better quality of life because of the care it provides. If Medicaid is cut back, Callie and thousand like her will suffer unimaginably,” she explained. 

 Under ordinary circumstances, Callie needs to be turned every two hours. “This broken leg prohibits that kind of movement. Where she is right now, she just wants to be still.” That’s exactly what her doctor ordered.   “The moving is awful, but once she is still again, she’ll give us a smile that I swear is to reassure us.”  

 Pam admits she has her hands full as she helps Callie live a full and meaningful life. “It can become overwhelming at times.”  Her unabating love for her daughter means there are many hats she must wear to give Callie the highest quality of care possible.  “Sometimes I feel like a doctor, a nurse, a social worker, a lawyer, an insurance agent and a politician. I just wanted to be a mama,” she said.    

 Callie’s Medicaid waiver currently provides funding for 121 hours a week of skilled in-home nursing care.  Pam often fills in two shifts a day to care for her daughter when scheduled caregivers call in sick – or just aren’t available. That is in addition to her part-time job in the school system that helps support the family.  Some of Callie’s medical and prescription costs are covered by Pam’s insurance coverage from her job — for now. 

Faces of the Waiver:  Medicaid Waivers Provide a Lifeline for Those with Disabilities

 Pam Walley prays as she comforts her daughter Callie in the Emergency Room at Athens Regional Hospital after her leg was broken.

 With so much on the line, she is watching carefully as the politicians in Washington, D.C. talk about re-crafting national healthcare policies.  “With a number like $800 million being tossed around as potential cuts in Medicaid, I’ve had about enough. When you look at my daughter’s face and know that Medicaid funds are what is keeping her alive, it is much harder to be impressed with saving $800 million.” 

   

 
Like many men in Dalton, Georgia, Lance Stephens is a fierce University of Georgia Bulldog fan. A self-described ‘hamburger connoisseur’  who likes to brew his own beer, Lance also cherishes a night out on the town with his girlfriend.  “I have a good life,” he says with a big smile as he reclines in his motorized wheelchair that supports his thin legs, atrophied from cerebral palsy. “Or CP for short, as they call it,” he says.  Lance is unable to walk, but talking isn’t a problem. He has his opinions, which he happily shares. 

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Lance Stephens with his host home family, Wendy and Kevin Curtis. “I have a good life now. I hope they don’t mess with Medicaid waivers. My life depends on it,” he says.

Lance doesn’t dwell on his physical limitations. “I can do a whole lot for myself,” he adds. “A whole lot.” 

Lance has lived in a host home for the past seven years with housing sponsors Kevin and Wendy Curtis and their two sons. Their home has been modified to accommodate Lance’s wheelchair, including a long ramp from the parking area to the house, with open spaces and wide doorways inside. Lance has a spacious private room that he keeps tidy and well swept.  He thoroughly enjoys Wendy’s southern cooking and shares Kevin’s love of sports — though not for the same teams.  

 Lance knows his life with the Curtis family could quickly fall apart if Medicaid funds that make it possible are cut from federal and state budgets. 

 “These politicians just ought to stay out of it, this Medicaid thing. People’s lives depend in it, including mine. I’m on it for a reason,” he says. 

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

With his host family Wendy and Kevin Curtis and support coordinator Angela Mackler, Lance Stephens jokes about his favorite sport team, the University of Georgia Bulldogs. Kevin and Wendy are strong University of Tennessee Vols fans.

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Lance uses a dry mop to keep his spacious bedroom clean and tidy. “I can do a whole lot for myself,” he says.

One thing Lance insists on sharing when first meeting someone is listing the many places he has lived in his 48 years. It is a mix of hospitals, group homes, apartments and shared living arrangements.  Many were less than pleasant experiences. “I’ve had a rough life,” he says. 

 “Lance feels like this is his house,” says Wendy, with a loving smile.

With his host family Wendy and Kevin Curtis and support coordinator Angela Mackler, Lance Stephens jokes about his favorite sport team, the University of Georgia Bulldogs. Kevin and Wendy are strong University of Tennessee Vols fans. “The unfortunate reality for Lance – and thousands more like him — is that all the years of hard work to secure a good living arrangement could be in jeopardy if the current cuts in Medicaid proposed by congress become a reality,” she explains. 

 “We’re known as home providers. We opened up our house to Lance and one other person with disabilities in exchange for the Medicaid money offered,” Kevin said.  Managing the home and providing what the two men need for a higher quality of life is the Curtis couple’s full-time job. “It’s not a whole lot of money,” he adds,”that’s not why we’re doing it.”

Kevin Curtis had a massive wooden ramp constructed outside his house to accommodate Lance and his motorized wheelchair.While Lance can do much for himself, there is still a lot of work for those who care for him. Kevin counted a dozen people involved in providing Lance with the care he needs to thrive in his community. Some of them are immediate members of the Curtis family, like their sons, who are not paid.  Others include professional caregivers like the one who accompanies Lance on his outings, and a support coordinator who supervises his care and well-being.  

“There’s lot of moving pieces and a mountain of governmental bureaucracy, both state and federal, to manage,” notes Kevin.  “A world without Medicaid to cover the myriad of costs required to keep Lance healthy, stimulated and alive borders on the unthinkable.” 

 Lance nods in total agreement. “I would be living in an old folks home,” he says. “My life would be miserable. It would be a living hell.”   

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Kevin Curtis had a massive wooden ramp constructed outside his house to accommodate Lance and his motorized wheelchair.

_____________

 
 
“The whole system of caring for the disabled is in big trouble,“ observes Vaughn Calvert, retired father to 41-year-old son John, who experiences autism. John was born with intellectual challenges that give him the mental ability of a four-year-old child, he explains. With the help of the Georgia Options organization, which provides teams of caregivers for around-the-clock support to those with developmental disabilities, John is able to live in his own apartment in Athens, Georgia.

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

John Calvert enjoys a splash in his apartment complex swimming pool, as direct support staffer Joshua Hall watches

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with DisabilitesJohn Calvert  sorts his laundry in his apartment. John lived at Central State Hospital in Georgia for 14 years before it closed. He was born with intellectual disabilities that left him with a mental ability of a young child. Now 41, John lives in his own apartment with direct support staff to keep him safe, well-nourished and active. That support comes from Georgia Options, a non-profit organization that supports individuals with developmental disabilities, and Medicaid waiver funding makes it all possible. 

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Dinner time in John’s apartment, as support staffer Joshua Hall works on the day’s notes.

 Previously, John lived for 14 years at Central State Hospital, a massive institution in the middle of Georgia that was once known as the state’s lunatic asylum. It was closed several years ago by federal mandate. Vaughn knew his son needed to be in a place where he could live his own life, but  a nursing home was not the answer.  

“John lives in his own place. He’s his own man,” Vaughn says. “John gets out in the community to go shopping. He visits the local library.  He sees movies and visits a  local YMCA where he swims and plays basketball.” John is also an avid horseman and rides once a week at a local stable that specializes in accommodating people with disabilities.

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

John loves horses and enjoys time at the Butterfly Dreams stable near Athens, Georgia

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Time on the basketball court with his friend and support staffer Josh Hall

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

John and his sister Laura spend an afternoon in a nature preserve in Athens, Georgia

He rested easier several years ago when John first began living more independently. He believed his son’s care was in good hands. The current Medicaid storm on the horizon has him deeply worried, and he often has sleepless nights. “It’s struggling already, so I think if you decrease Medicaid funding the system will implode for sure,” he says. 

“Our families are in the position that they have to constantly fight from the minute their kid is born to their last breath,” says Rena Harris, who directs Georgia Options. “They can’t rest.  Our families are exhausted.” 

 “The system is not working now, who in their right mind thinks taking money away from it will make it better?” Callie’s mom argues.

 Government agencies use a complicated formula involving clinical assessments to determine who among  thousands of developmentally disabled people are the most needy and eligible for Medicaid. For individuals living outside the walls of institutions, a waiver is required.

 While nearly 12,000 Georgia residents are currently provided with waiver funds, another 8,700 individuals have been approved for the waiver but must wait for funds to open up. The list continues to grow, with only a few hundred approved each year.

 “People with disabilities have the same right as everyone else — to live full and meaningful lives in the community, “ notes Talley Wells, an attorney and co-director of the Disability Law Project at the Institute on Human Development and Disability at the University of Georgia. 

“In 1999, the United States Supreme Court affirmed this right in its landmark Olmstead decision.  It held that requiring someone to receive services in an institution or nursing home is disability discrimination when that person can live at home with supports.” 

Olmstead is often compared to the Brown v. Board decision due to its impact in outlawing segregation of people with disabilities in institutions and requiring integration of people with disabilities in the community.  A Medicaid waiver is often essential to ensuring this integration because it provides what people with disabilities need to live, work, and participate in community life,” he adds..

 If there is any upside in this, it is the opportunity that comes from having Medicaid in the headlines, notes Rena Harris. 

 She is optimistic that many people care about vulnerable citizens but don’t understand what cuts to Medicaid mean. “If we can educate them on what this means and who will be affected, then we might be able to effect change.”  

 She warned against underestimating the community affected by the proposed cuts. “The disability community and self-advocates and people who love them and support them are fierce,” Harris continues. 

“My daughter is a very squeaky wheel even though she’s non-verbal,” Pam Walley adds. “It is incumbent on the rest of us to unite our voices so Callie and others like her can have their message heard.”

Stephenie, At Last

June 14, 2014

Happiness is difficult to define for a person who doesn’t fit neatly into society’s conventional concept of gender. Transitioning to the preferred gender is sometimes the only solution to resolving dissonance between one’s internal identity and how society perceives them. It is especially challenging for older individuals who have lived with the discord for most of their lives — but ultimately decide they must be true to who they are, often at great personal cost.

Stephenie Viewweigh was able to live her last years in the gender she always knew she was. She died Friday, June 13th, 2014.

Stephenie at Last: Transition is an 'Inside Job'

  Story and Photographs © 2014 Robin Rayne Nelson/ZUMA Press

All Rights Reserved

East Point, Georgia –Stephenie Vieweigh would never forget the bitter, metallic taste of the rifle barrel in her mouth. Her finger was on the trigger — and she was pulling it.

“I couldn’t go on living a lie, unable to be who I really was,” she explained.

It was six years ago on a late-summer morning near Turtletown, Tennessee, a small mountain community near the Georgia and North Carolina borders.  Stephenie was sitting beside her kitchen table in the house she built a few years earlier. 

“My friend Dan from the local Alcoholics Anonymous group had stopped to visit. Nobody locks their doors in that town, there just wasn’t any reason to. Dan just walked in the door as I was taking what I thought would be my last breath. He saw me and in a split second grabbed the gun out of my mouth. I just sat there, sobbing, unable to talk,” Stephenie remembered.

“He kept asking, ‘What’s up? What’s wrong?’”

“Everyone in that town only knew me as Stephen. The real me — the person I was in my head, my heart and my soul — was Stephenie. I told him, ‘I know I look like a guy but I’m a woman. I got stuck in the wrong body. I think like a woman. I have the emotions of a woman.  I perceive life in a feminine manner. I’ve known all this since I was about six years old.’”

“I said, ‘If I couldn’t live my life as the woman I knew I was then I didn’t want to go on living. I couldn’t be ‘her’ where I was. I couldn’t not be ‘her.’ The physical, emotional and spiritual pain was more than I could handle.’”

Stephenie’s friend had never heard about transgender, transsexuals or gender identity issues. “I don’t know anything about what you’re saying, but you need to get hold of a therapist. Now,” Dan insisted. He unloaded the rifle and took it with him. He left the bullets on the table.  “I’m sure Dan was bewildered by what he had witnessed. He kept his distance from me after that. I never saw him again.”

steph1

“For as far back as I can remember, I wrestled with knowing I had the wrong body. It was a bad joke that I couldn’t do anything about. I was never male, I just looked like one for most of my life,” said Stephenie, now 69.  As Stephen, she served four years on a destroyer in the Navy and is a Vietnam War veteran. She also earned college degrees in architecture and computer-aided design. “I lived in Indiana, Florida, Tennessee and now Georgia. I worked in construction as a painting contractor, carpenter, framer, plumber, and even as a county computer technician. I presented a male façade as Stephen during the day, but my brain always knew different.”

“For several years when I lived in Florida I’d come home after working all day, get dressed in something pretty and drive thirty minutes to Tampa. I’d visit friends, go to restaurants and just interact with people as Stephenie. Some nights I stayed out until one or two in the morning.   I was always terrified of being discovered,” she continued.

That gender struggle was stuffed down deep when, as Stephen, she met a woman and married. That secret-self had to remain a secret.

“My wife owned a ladies’ consignment shop. My job was to maintain the place. I’d go in after hours, look through all the fabulous clothes and shoes and get dressed while I worked on whatever the place needed. If my wife ever suspected, she never said anything.”The couple moved to Tennessee a few years later and built a home, but the marriage didn’t survive.  “It had nothing to do with my gender issues, though,” she explained.

steph7

Her need to be Stephenie soon emerged stronger than ever. “I returned to living as Stephenie all the time while I was home. I started on hormones but never really saw any change in how I looked. I saw the same ugly mug in the mirror every day. I kept sinking deeper and deeper into depression,” she said.  “I remember tying a rope around my neck several times while sitting in the loft, thinking it would be better to be dead.”

There was no place to go outside of her home. The closest town was more than 90 minutes away.  “Some nights I’d just get dressed in slacks and a blouse and drive around those mountains at midnight when everyone else was asleep, hoping nobody recognized me.”

A recovered alcoholic with 26 years of sobriety at the time, Stephenie thought she could cope with the gender discord.  “But after decades of this torment in my head, I just didn’t want to go on living,”  she said.

A few days after her suicide attempt, Stephenie located a therapist in Atlanta to help her understand gender incongruity. They emailed back and forth several times a day for a few weeks.  “Finally, I found the courage to drive down and see her in person.  We connected right away. I saw her once a week for a few months. I didn’t feel like blowing my brains out anymore.”

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After several months of sessions, the therapist persuaded Stephenie to move to Atlanta and begin living full-time in her preferred gender. “I couldn’t go on the way I was.  I‘d lost my house in foreclosure and didn’t have any place to live,” she explained.

Two weeks later, her red pickup truck loaded with boxes of clothes and a few personal items, Stephenie left rural Tennessee for a new life in Atlanta.

“As soon as I got out of my driveway, I felt free. There was this huge sense of relief. It was all about coming unattached to what I’d been attached to. It was more than just Tennessee, it was my whole life up to that point. It was exciting and extremely scary. I’d heard all these stories about transgendered people getting stabbed, mugged, beat up or shot.”

“I suppose I’m what some people call a ‘late bloomer,’ but age doesn’t really have anything to do with it. I reached a point where I either had to be Stephenie or be dead, but I’d come through too much in my years of sobriety to be dead because of this,” she continued.

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“I made the decision to push through my fears. I allowed myself to open the door and get on with my life. At 63, I was finally going to be the real me in front of everyone. I wasn’t going to lie any more.” she said.  “That decision saved my life.”

Stephenie rented a succession of bedrooms in and around Atlanta, hoping to find work to supplement her limited Social Security income.  It didn’t worked out as she’d hoped. Last year she was robbed at gunpoint in the house where she was living. “They took my rent money, food money, my purse, makeup, computer, my car, my ID, everything. But I’m still alive,” she said.

 “When I came to Atlanta, the public’s awareness of transgender was nothing like it is now. When I got here there were lots of stares and whispers. I got all caught up in being accepted by other people. I relied on how other people viewed me. If other people liked me and accepted me then I could like me. I relied on other people’s comments to know how to feel about myself. It hurt in the beginning because I wanted to go from  Stephen to Stephenie at 100 percent. I wanted everything to be wonderful.”

“I also got caught up in the commercialism of being a woman — the right clothes, the right hairdo, the right makeup. That’s all outside stuff. It has nothing to do with who you are as a person,” she said.

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She calls transitioning an ‘inside job.’ 

“It’s not about other people putting their arm around you and telling you you’re okay. My transition succeeded the day I accepted exactly who I am, what I look like and how I present myself.  When I realized that, I said, ‘Yippee, I can do this!’  If there are those who point and snicker or show disrespect, I don’t pay them any attention these days,” she said.

“If people like me, that’s fine. If people like how I’m dressed or how I wear my makeup, that’s fine.  If they don’t, that’s fine, too. They have that choice, just like I have that choice. My voice is a bit rough and I know I’m never going to be what society calls pretty, but I don’t need other people to validate my own sense of who I am. These days hardly anyone addresses me as ‘sir,’” she added.

“I know my face isn’t beautiful, but so what?  To who?  Take the makeup off a lot of those models and see what they look like. Women have bought into the lie that they are only what they look like.”

 Stephenie limits herself to one meal a day out of habit and financial necessity. Her Social Security check goes for rent, utilities, food, cell phone service and car insurance, with enough left to buy peanuts for her neighborhood squirrels. She manages to make weekly visits to a local AA meeting and drives thirty miles each way to a gender support group every few months.

Tall and thin, Stephenie exudes an unwavering confidence in her internal sense of identity, though she has as no funds for a legal name change. Her driver’s license still reveals her birth name and sex.  Her prominent bust is the result of silicone breast forms. “They look, feel and jiggle just like real boobies.They just come off at night,” she joked. “I don’t have money for doctors, hormone therapy or sex reassignment surgery, but I’m too old for all that now anyway,” she said, wistfully.

“Transgender stories are all over the newspapers and television now. Maybe we’re not totally accepted yet but society is much more aware of our struggles these days,” she said.

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 “An old friend from Florida managed to find me a few months ago on the Internet. We actually dated many years ago. I told her about my transition to Stephenie and what my life had come to. She was very accepting.” 

“She invited me to come live with her. We’ll share the food bills and utilities and I’ll have enough money to live on. It will be great to be with my friend, away from all the crime in Atlanta. I can start living instead of just existing.”

 “At last I can have my license changed to read ‘Stephenie.’  Maybe I’ll see some other friends from back then, once I get moved,” she said.  “I’m sure we’ve all changed a lot — maybe some of us more than others.”

~~~
Stephenie got herself to central Florida in late January to live with Kip, her friend from years ago. Her life seemed to be starting a new chapter, even as she approached her 70th birthday.
She’d been in Florida only a few weeks when she began coughing. It grew steadily worse. “You’re sick, you need to go to the doctor,” Kip told her. 
The doctor’s diagnosis was blunt. “You have lung cancer,” he told her. She was admitted to the hospital, where further tests revealed a brain tumor as well.  It was Stage 4 cancer.  He suggested radiation treatments to keep the tumors small, at least for a while. “I guess I shouldn’t be surprised, with all the cigarettes in my life,” Stephenie said. 
Once she was released from the hospital, Stephenie learned she was no longer welcome at her friend’s house.   With no money, no transportation and no place to live, a hospital social worker directed her to a modest group home that provided a bed and meals.
 Stephenie had to present as Stephen in order to move there. It was a matter of survival. 
'Vacation Rental' Group Home Abuses Sick Elderly
The home was in the country, miles from town, her doctor or any stores. Her hair and beard had grown long and grey. Her makeup, heels, blouses and dresses were stuffed into a duffel bag. Stephenie had gone underground. It was a painful re-transition.
Her roommate was Robert, a former realtor from Palm Beach who had lost his wife and now had spine problems. The cramped room they shared lacked heat or a working air conditioner, but they were afraid to complain. They were both one step away from being homeless. 
“It was horrible,” Stephenie said. “There was one toilet for eight people, and it didn’t work very well.  We are macaroni and cheese or rice and beans most days.”
The owners had placed a lock on the refrigerator door to keep the residents from between-meal nibbling. They also drove their residents to a bank on the first of every month to cash their social security checks. The owners took most of it, leaving Stephenie and her housemates with a just a few dollars for personal necessities. The home had been investigated numerous times for suspected abuse, but the owners were never convicted. 
After several months, Stephenie called the county’s adult protective services out of fear and hunger. Investigators managed to get her designated as a ward of the state.  She was relocated to another home with honest and compassionate caregivers, Valerie and Howard.
Stephenie began radiation treatments and ate heartily to regain her strength. “Being here with these people, it’s like heaven,” she said. “The food is wonderful and they are very nice to me. I even have my own room,” she said.  She was grateful — and hopeful.
Stephenie continued to present as Stephen. “I didn’t want to cause problems or answer questions,” she said. “I know who I am so it doesn’t really matter, does it?”
Questions briefly surfaced when Valerie helped her unpack her duffel bag of clothes and found only the blouses, slinky dresses and designer sandals. “They were just some clothes a friend gave me because she owned me some money,” was Stephenie’s explanation.  The couple managed to find some used men’s shirts and jeans for Stephenie to wear. Neither Valerie nor her husband mentioned her wardrobe again.
Stephenie’s cancer grew despite the radiation treatments. A few weeks after she had been relocated, she suffered a massive seizure. Then, a large blood clot caused her leg to swell with excruciating pain a few days later. Stephenie was soon back in the emergency room,  then readmitted to the hospital. 
She was transferred to a nearby hospice center the following week. 
“I’ve had a full life.  I know I’m terminal.  I’m ready to get out of here. At least I got to live as Stephenie for a while,” she said, pensively.
As Memorial Day approached, her doctors ordered  morphine to ease the pain in her chest from the quickly advancing cancer. She slipped in and out of consciousness as the drug took effect.
Valerie and her husband  eventually learned the truth about Stephenie’s gender identity
“Well, that certainly explains the clothes,” Valerie said.  “I’m going to call her Stephenie from now on. Oh, how I wish I’d known this before. We could have made her a lot more comfortable. I feel bad that she thought she had to hide who she really was.”
The hospice center’s social worker agreed. “It’s our mission to make our patients as comfortable as possible,” she said. Even though Stephenie was quickly approaching the end and wasn’t able to talk much, she could hear what others  were saying in the room, the social worker explained.
“Hearing is the last thing to go. I know she can hear us so I’ve instructed the nursing staff to address Stephenie by her preferred name and gender from now on.”
A few days before she died,  Stephenie told Valerie of a conversation with her roommate who was a Baptist pastor. They talked about God. Stephenie was afraid of dying alone.
“She wanted to know for sure if God was real,” Valerie explained. “She and the pastor talked a long time. Late that night, their  room filled with a beautiful light. Steph said she knew Jesus was there. She felt overwhelmed with love and she knew God was real. The next morning the pastor asked if something happened during the night. Stephenie told him what she’d seen.  “I know, I felt it too,” he told her.
Valerie offered to shave Stephenie’s  beard so she would be more comfortable as herself, but she declined. 
“I guess it doesn’t really matter, God loves us no matter how others see us. And there is no gender in heaven. We leave these bodies behind,” Valerie said to her. “It’s our spirits that go to Heaven.”
~~~
Stephenie died on a gentle June morning. Valerie sat beside her and prayed as soothing flute music played softly from a CD player she’d brought with her.  She held Stephenie’s hand for more than an hour as life slowly slipped away.  Then there was her final breath. The room became still. 
“She had no family, but she died knowing she was loved,” Valerie said, wiping tears from her eyes. “She didn’t die alone.”
Back at the house, Valerie began the sad task of sorting through Stephenie’s personal effects still in her bedroom.  She planned to donate her wardrobe to a nearby thrift store that supported the local Humane Society.  “She had twenty pairs of heels and sandals and nearly as many purses stashed in her duffel bags, as well as the dresses and blouses. I know Stephie wanted to help care for the animals who didn’t have a home.”
Valerie found some papers among Stephenie’s possessions that indicated she’d purchased a casket and a burial plot years ago in St. Petersburg. A local funeral home offered to drive her remains to the cemetery and take care of the burial. “Her grave will remain unmarked.  I guess she decided she didn’t need a stone,” Valerie said.
As Valerie packed Stephenie’s clothes for the charity, she kept an eye out for the small token that Stephenie treasured — the one inscribed, ‘To Thine Own Self Be True.’  She wanted to hold onto it.
“That was Stephenie. She was finally true to who she was —  even if she didn’t look like it in the end,” she said.
“I learned a lot about gender and accepting people for who they are,  just loving people as they are,” Valerie added. “I’ll miss her.”
 © Robin Rayne Nelson
All Rights Reserved

Tom and Jan’s Alzheimer’s Journey

September 10, 2013

Story and Photographs © Robin Rayne Nelson/ZUMA

RN4_6287aaJefferson, Georgia –Tom Blacketor leaned over his wife Jan, sleeping peacefully next to him on their sofa. He whispered tender, loving words into her ear.

 Jan sleeps a lot now. Alzheimer’s disease has taken a toll on her body as well as her brain. She woke slightly and tried to respond to Tom — with words that were unintelligible except to Tom. He smiled and gently kissed her cheek, something he does constantly through the day.

 “I brought her home from the nursing home last week. She was there eleven months.  She got really good care but the  $2,500 monthly bills were more than I could pay,” Tom explained.RN4_6911aa

 Tom and Jan met nearly fifty years ago. They were high school sweethearts and married a few years later surrounded by rural Indiana farmland. He worked for several newspapers on the huge printing presses. She raised their two children. They moved to Georgia in the mid 1980s.RN4_6293aa

 Jan was diagnosed with Alzheimer’s disease two years ago at age 63. 

 “I’m 67. I had retired, but Jan’s condition was getting worse. She became very combative and restless. She did things that worried me, like putting our small dog in the refrigerator. The dog was fine. She was in and out of the hospital as her doctors tried to find the right combination of meds for her. The only solution was to place her in the nursing home.  I went back to work to try to pay for it.” 

The monthly costs were more than he could manage. Tom fell behind in his mortgage payments and nearly lost his house.

 A few months ago, an infection left her unable to walk. She lost weight and slept most of the day at the nursing facility. Tom’s early-morning printing press job had dwindled to just a few days a week.

 “It just made sense to quit the job and bring her home.”

A hospice nurse visits several times a week to help bathe Jan and check on her medications. Tom devotes most of his day to caring for his wife. His daughter and niece provide care when Tom needs a break.

 “It’s better that she’s home now. I can take care of her and spend time together,” Tom said.

Tom watches Jan as she sleeps during the day on a living room sofa. He anticipates her needs, makes her meals, prepares her medications, changes her diapers and does all he can to make her comfortable. The television is usually on, tuned to a news channel with the volume turned low. Some days he has soothing Christian music playing.

 “The doctor says maybe she has six months. Nobody knows. I just take it one day at a time. She’s the love of my life and every day we have together is precious.”

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Blending In

March 29, 2013

A Unique Coffee Bar Raises Autism Awareness

Story and Photographs © Robin Rayne Nelson/Zuma Press

RN4_7246bAtlanta, GA —  Customers who stop at the Cafe´Blends coffee bar likely just see Omar Troy as the friendly young man with the engaging smile who offers them a complementary coffee or latte while they wait for their cars to be serviced. It’s only when they take a closer look at the sign or the subtle logo on Omar’s apron that they might sense something is different.
Omar lives on the autism spectrum. He loves his job so much that he rides a bus two hours each way to get the Lexus dealership and home.
Rebecca Haskew, 28, works the morning shift at the same cafe. She experiences autism as well, but customers might not realize it at first either.  She is totally focused on making her lattes perfect, with just the right head of steamed milk foam. As she chats with customers, she stops in mid-sentence now and then to mentally review what she’s to do next.
 
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Omar and Rebecca are two of nine baristas at three Nalley Lexus and Toyota dealerships in Atlanta. The dealership service areas proudly feature the cafes for their customers, but not  just for the free coffee.
The cafes were created in partnership with Nobis Works, a local non-profit that provides job training and employment for people with disabilities.
The young baristas don’t appear any different from employees one might find at a nearby Starbucks.
“That’s the point, isn’t it?  They blend in,” explains Tracy Birdsong, a Nobis supervisor who watches over her young, energetic crew.  “Every employee who wears the apron and makes the coffees, lattes, espressos and tea lives somewhere on the autism spectrum. They are very high-functioning and they love that they have an opportunity to work and be a regular person.”
 
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The Asbury Automotive Group owns more than seventy auto dealerships in ten states, including the Nalley locations in Atlanta. 
“They came to us at Nobis Works and said, ‘We have a concept to put coffee shops in some of our dealerships for our customers who are buying cars or having their cars serviced,”‘ explained Karen Carlisle, Vice President of Nobis Works.  “They wanted to hire people on the autism spectrum and bring them into the workplace to increase public awareness of autism.”
“The managers said, ‘We don’t know anything about how to find individuals with autism or how to hire them or manage them, but we know that you do,'” Karen continued. “They asked us to help them. They opened the first cafe in 2012 and now there are three cafes in Atlanta, with more to come in other cities,” she said. An Asbury Mercedes dealership in Tampa operates a similar cafe in conjunction with a different non-profit. A Toyota dealership in Greenville, South Carolina opened in March. The automotive group hopes to open cafes in their Jacksonville, Florida and St. Louis, Missouri dealerships later this year. 
“People on the autism spectrum typically don’t  like to deal with people.  They don’t like to have eye contact, so this was a real stretch,” Karen continued.  “Our job developer worked with the Georgia Vocational Rehabilitation team and found some terrific young adults who experience autism. They hired them and worked with them, not only to train them as baristas but also to educate the dealership employees about how to work with individuals on the spectrum.”RN4_6795b
“The program succeeded because it came from the top down,” Karen said. “The general managers really wanted to do this. They were looking for a cause. One of the managers had a coffee vendor with a child with autism. and they all thought the cafes would be a great way to educate people about it.”
The sales staff and service advisors explain the concept to every customer. “They tell them everything is complimentary and it is designed to raise awareness about what autism is,” Tracy noted. “Sometimes people are afraid of what they don’t understand, but the baristas do their best to put everyone at ease.”
“I’ve had customers come up and ask what this is all about. I’ve had parents who are deeply touched because they have a child with a disability  or they know someone with autism. And they go, ‘Oh my God, there’s hope,’ and they just start crying. I’ve had people tell me they will come back time and time again to have their car serviced here just because of this.”
“I think other businesses will see the value in this project,” noted Karen. “It’s such a great public relations tool — and it’s the right thing to do. It’s a win-win for everyone.”
“We had one young woman who didn’t make eye contact with anyone when she started working here. She was very protective, like ‘don’t touch my space.’  A year later, she laughs, she hugs, she jokes, she’s become a social butterfly,” explained Tracy, who supervises two of the locations.RN4_7113b
There are three baristas at each location. Each one works a 6-hour shift by themselves, with a 30-minute lunch break. “For several hours each day it’s just them by themselves. I divide my time between two of the locations to supervise,” Tracy explained. The third location is managed  by another Nobis supervisor. The cafes are staffed whenever the service department is open —  7 a.m. to 7 p.m. Monday through Friday, as well as weekend service hours.RN4_6550b
“Usually I stay out of their way and let them work,” Tracy said. Occasionally I offer prompts or suggestions. I might asked them to say ‘yes’ instead of ‘yeah,’ or remind them of simple grammar. I’ll remind them to say ‘thank you’ or suggest repeating the customer’s order back to them to make sure they have it right. I’ll remind them to keep the area clean. They have a check list they go to throughout the day that serves as their own prompts. They have to be able to do this when I’m not here. They take pride in their jobs. They take ownership, like running their own coffee shop, and they work on their social skills.”
Not every person on the autism spectrum wants a job like this, warns Karen. “You need customer service skills. You have to make eye contact. You have to talk to people and be willing to step outside of your comfort zone and put yourself out there. You have to be able to speak to people and manage your time so that everything gets done.”
“There are some on the spectrum who function high enough to do the job but they’ve been sheltered by their parents,” Karen observed. “We have a tendency to shelter our children, to protect them. Thats true regardless if they have a disability or not, but especially so if they have a disability.” Karen has a child with cerebral palsy. “Sometimes the parents’ sheltering makes it so their children lack accountability for what they do or don’t do,” she said.
“If they’ve never had a job, to actually be accountable to come in on time for a job, to work their shift, to do the things they’re supposed to do, it can be tough.”RN4_6919b
“I try to make customers happy but sometimes you can’t make everyone happy. I don’t like it when people are rude. Sometimes people don’t understand disabilities,” Rebecca observed. “But I like the people who work here and most people are nice. I feel comfortable here. I like interacting with people I haven’t met before.”
“A year ago, Rebecca was far more self-conscious and wouldn’t have been able to interact with customers as she does today,” Karen noted. “It’s so wonderful to see how they each blossom on the job.”
Omar was also far more introverted before he started work at the cafe. 
“I wasn’t very social before.  When you grow up around people who are normal but you’re not, that makes it hard to interact with others and hard to communicate,” he reflected. “Being around people here  and serving them has opened me up to others who are different. Everyone is different in his own way. You have to look outside of what you’re used to.” 
Omar had considered looking for a job as an animator or computer game designer. Now he’s thinking that perhaps a job in broadcasting might be more interesting. He demonstrated his radio voice with a deeply resonant “This..is CNN’ and laughed, his eyes twinkling. 
And then he was back behind the counter to make a flavored latte, happy in the moment. His joy overflowed as he served his customers, showing everyone that autism needn’t be feared.
 
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Remembering ‘Zackie Boy’

January 19, 2013

A mother’s anguish as her child is placed in a nursing home

Story and photographs © Robin Rayne Nelson/ZUMA Press, All Rights Reserved

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Powder Springs, GA — Nola Sayne greeted guests at the memorial celebration for her son Zachary, who died a few days into  2013.

Few of the guests had actually known Zach. He died where he had lived for the last 15 years – in a nursing home 200 miles away from his Georgia family.

Nola wanted the afternoon to feel more like an open house than funeral.  “It’s to be a celebration for Zach,” she said.

Nola’s personal knot of emotions was a twist of grief, sadness and relief, all tinged with an undercurrent of guilt for placing her son in a skilled-care facility when he was ten years old.

“I always felt I should have done more to keep him home and care for him here,” she said quietly, even though she admits she had few options at the time.

“Zach was born five weeks premature. It was an emergency c-section and I was told everything was okay. I later learned he was born ‘blue’ and they had to give him oxygen for ten minutes to bring him back,” she said.

Nola brought her son home unaware of any problems. But Zach was her second child and she soon knew something wasn’t right. 

“He didn’t make eye contact, he didn’t try to hold his bottle or try to lift his head,” she recalled. “His doctors eventually said he had spinal meningitis. After I got his medical records from the hospital we went to a see a neurologist. The doctor walked into the room and said, ‘He has cerebral palsy.’ I was 23 years old. I didn’t even know what that was.”

After several years of therapy, Nola enrolled her frail son in a special school for severely handicapped children. He never crawled or lifted his head. Typical milestones in child development never arrived. Within a year he began having seizures.  

By then, Zach’s father was out of his son’s life. “He couldn’t handle it. He was never involved with his son,” Nola said.

“Zach eventually was able to do a few things that indicated he understood me. He could push a button or move a joystick with his hand. He responded to what I told him and he knew when I scolded him,” she said.

Zach_05caa copyZach laughed when she tickled him or whispered in his ear. “I used to lean over and say ‘Zackie boy, Zackie boy’ and he would just laugh and laugh. He was always wanting me to hold him or touch him. But he never spoke.”

While Zach was at the special school and an after-school daycare program, Nola was able to work; first as a customer service representative, later as a legal secretary.

“Whenever I applied for a job I explained my situation as a single mom with a seriously handicapped child. There were many times I had to leave early. I was always in trouble in my first job for leaving early or missing work because of Zach’s health problems. My other bosses were very understanding and kind.” 

Caring for Zach when he was home was a full-time job in itself. 

Nola’s son Josh was older by 22 months. “He learned to be very independent. I taught him to cook and do his own laundry when he was nine. Josh had to take care of himself because I had to take care of Zach.” 

“I was Zach’s arms and legs and voice. If I fed him I couldn’t put him in a high chair because he’d fall over. So I sat him in my lap to feed him. When he was sick he slept on my chest so could feel him. I’m still a very light sleeper.”

“I carried him everywhere — to the video store, the grocery store, everywhere we went until he was 10 years old. He only weighed 30 pounds.”

Zach had a fragile immune system and was prone to constant infections.  He had pneumonia numerous times, seven in his tenth year alone. 

“That’s when doctors realized he had been aspirating food into his lungs when he swallowed. Part of it would go into his esophagus but part of it went into his lungs. The doctors decided he needed a feeding tube.”

After the tube had been placed, Zach gained nearly a pound every week.  Lifting and carrying Zach soon became a struggle for Nola.

The day care center’s director called and said the staff was uncomfortable with Zach’s feeding tube. They wouldn’t keep him anymore, even though they had cared for him since he was six months old,” Nola recalled.

“The other daycare centers in the area refused to accept him,” Nola said.  “My mother had been helping with Zach for all these years but she moved to Arizona. Zach’s father was still completely out of the picture. My support was gone.”

Nola placed newspaper ads hoping to hire someone who could care for him after school. One woman, an empty-nester, agreed to take the job. It didn’t last long.

“She called me after the first week and said, ‘I can’t do this anymore. Please come get him.’ I drove to her house. Zach was in his little carrier, sitting on the front porch. The woman opened the front door a crack and was crying. She said, ‘I’m sorry’ and closed the door. That was it.”

Nola tried for weeks to find another caregiver for her son but had no luck. Her understanding boss graciously allowed her to bring Zach to work with her. 

“It was a metal fabricating plant. Zach slept on a pallet near my desk while I worked. It was noisy and dirty but the guys that worked there were wonderful to us. They were like brothers.”

Nola knew it couldn’t continue like that indefinitely. She moved in with friends to save money. She applied for Social Security benefits to help with Zach, but her application was denied.

“I didn’t have day care anymore. I didn’t have anyone to watch him. I had to figure out what to do. Zach had gained nearly 25 pounds because of his feeding tube. He had grown out of his wheelchair. And now every time we went somewhere I had all this other stuff to take, the feeding pumps, the equipment, all his medicine. We became even more confined.”

“A social worker asked if I’d ever thought about placing Zach. I didn’t know what that meant. She said, ‘You know, putting him in a facility.’ I told her I didn’t know I could do that.” The social worker mailed Nola a list of nursing homes in the southeast that accepted children. 

“There weren’t any facilities in Georgia that would accept children. There was one in North Carolina that had a long waiting list. There were some places in Florida. Alabama had two that were specifically set up to care for disabled children,” Nola recalled. 

She drove with a friend down to the Father Walters Home in Montgomery, Alabama to have a look.Zach_08caa copy

“I have to admit that part of me was relieved. I felt like I’d had a newborn with me for ten years. This home had 24-hour nursing care and I thought they’ll take care of him the way he needs to be cared for,” Nola recalled.

When the time came to move Zach into the facility, her friend drove Nola and her boys on the three-hour journey.

“It was absolutely horrible. I felt like an awful mother but I didn’t know what else to do. I had no options. My friend kept saying,’ This is the right choice. The kids at this place are always clean, most of the staff have worked there for years and they obviously love these kids.’ 

“And she asked me, ‘What are you going to do if you don’t do this? Do you have a bunch of money to pay a nanny or nurse to watch him?’ I didn’t.

Nola, Josh and her friend got Zach installed. His ward was a large room with several beds and large cribs, medical equipment and stuffed animals. The home accommodates 54 children. 

The drive back to Georgia was somber. “My friend and I cried the whole way home,” Nola said. 

Her tears, sadness and self-doubt festered in the weeks that followed. Her doctor prescribed anti-depressants. She began to drink.

“I felt very alone. I learned later that Zach had grown very depressed too. At first I called every night and talked to him. I drove down every two weeks, sometimes every week for a day or two. And Josh blamed himself for his brother moving to the home. He said if he had helped more at home then Zach could have stayed with us.”

Nola remarried a year after Zach was moved to Montgomery. She had known Jeff since high school. He was totally supportive and they often drove together to visit Zach.

“I felt like nobody else understood. Having a special needs child, you’re already in a small minority. When people learn you’ve placed your child in a nursing home they looked at you funny so most of the time I tried to avoid talking about it. They wonder, how could a parent do that?”

“It was too much to explain. People would ask me if I had kids. If I said yes and they asked their ages, they would say, ‘oh yeah, those high school years,’ or bring up drivers licenses or ask about college. It would lead to questions I didn’t want to answer. It was just easier to not talk about it.”

The weekly drives to Montgomery eventually became every three weeks. Usually Nola drove alone. Sometimes Jeff joined her. Now and then Josh would come along.

When Nola arrived on Saturday mornings she would tenderly brush Zach’s hair and as she talked to him.  Sometimes he would open his eyes when he heard Nola’s voice. Mostly, Zach slept. 

Nola routinely checked the feeding pumps that kept him nourished. She fluffed his pillows and made sure he was as comfortable as possible, carefully lifting his brittle and atrophied arms and legs. Sometimes Nola or Jeff lifted him in his wheelchair for a ride to the family room where they could take turns reading children’s stories to him. When weather permitted, they visited the home’s courtyard for a change of scenery, always mindful of bright sunlight’s effect on Zach’s pale skin and sensitive eyes.

Zach_15aa copyIn all the years of visits, the goodbyes never ceased to be difficult.  Nola would kiss Zach’s forehead and whisper ‘I love you’ in his ear. Zach would sometimes respond with a blink of an eye. As dusk approached, Nola would head back to the interstate for the long drive home, always with a heavy heart. She was grateful for the excellent care her son was receiving, but in recent years there was a constant voice in her head urging her to bring Zach back to Georgia. 

Zach had been in Alabama so long that he was now a resident of the state. Nola had to file for guardianship in order to move him back.  In the fifteen years since she placed Zach in the home, not a single skilled-care facility for children had opened in Georgia. “Nothing had really changed. The waiting list for Georgia’s Medicaid Waiver that provides funds for disabled residents had grown to nearly 6,000 names,” she said.

With years of inactivity, Zach developed scoliosis that created problems with his lungs and heart. His breathing became labored. There were numerous visits to the Montgomery hospital’s emergency room. Nola always stayed with him, often for days at a time. “I wasn’t going to leave him in the hospital without a voice,” Nola said. “Bad things happen when you can’t talk.” 

In the last few months as Zach’s condition deteriorated, Nola sensed the end was near. “His fingers were touching his arm and his toes were completely curled under,” she said.

“I wasn’t praying for healing anymore. I was praying for God to pretty much just take him. I had talked with Zach on some of his hospital stays when it didn’t look good. I held his hand and I told him, “You don’t have to stay here. It’s okay. You can let go.”

“At Christmas, we drove down to visit and bring his gifts. They were brightly colored pillows and pajamas. He had quite a pillow collection since that’s how we shifted his position in the bed, with pillows.”

The next week, Zack was back in the hospital for more breathing difficulty.

“The doctors couldn’t find anything specifically to treat but wanted to keep him in the hospital just to be safe.  I fought that,” Nola explained.  “His condition wasn’t going to improve. They couldn’t cure him. If he stayed there he would be on oxygen 24 hours a day and would just live there. They were constantly doing IVs in his armpit because they couldn’t find veins, it was horrible.”

“Zach was miserable in the hospital. He wanted to be back in the nursing home. I told the doctors, ‘If you’re concerned about liability don’t worry, I’m not going to sue anybody. I reminded them of the ‘Do Not Resuscitate’ order I signed. I said, ‘We can’t keep Zach around forever.’ I didn’t want anyone to be a hero. Zach was soon back in his own bed in the nursing home.”Zach_01caa copy

Four days after New Years, nursing staff called to tell her Zach tested positive for flu. His doctor assured her Zach would be treated in the home rather than subject him to another hospital stay. Nola was grateful.  She planned to drive down first thing the next morning.

The call at 4 a.m. jarred her awake. “Zach’s breathing had become much worse,” she said.  “The ambulance was called to rush him to the hospital.  I cried and called my mom, who had recently moved back to Georgia. She agreed to go with me immediately.”

The nurse called again twenty minutes later. Zach was gone. He died before the ambulance could get there.  It was over. 

“It was the call I had imagined I don’t know many times, wondering how it would come,” Nola reflected. “I wanted to be there when he died. But he didn’t die alone. He died in his bed, at home, where he was comfortable.” 

RN4_9710aa copyThat Zach’s memorial is on a Saturday is quite appropriate. “Today would have been a typical ‘visit Zach’ Saturday,” Nola said.

It will take time for the sadness and the grief to lift, and the guilt that comes with placing your child in a nursing home.

“I did everything I knew to do,” Nola said. “But I will always ask myself if I couldn’t have done more.”  

_________

Nola and Zachary Sayne’s story is featured in ‘Not Home,’ a documentary on children who live in nursing homes by filmmaker Narcel Reedus. I was privileged to serve as the still photographer for this project.

No Labels, Please

April 19, 2012

 

Story and Photographs by Robin Nelson

 

 

Milton, GA —  Meggy Kay felt like a princess. Her best friend and high school classmate Alanna Christian was giddy with excitement. The girls watched from Alanna’s bedroom window as their tuxedo-clad ‘Prince Charmings’ approached the house with corsages in hand. It was prom night. This would be a most special occasion — and not just for the students.

“It’s a rite of passage as the kids make that transition into being adults. For parents of children with challenges and developmental disabilities, it’s a milestone as well,” admits Meggy’s dad, Kenny. 

Meggy and Alanna are both seniors at Milton High School. They’re both in the special education class because of intellectual challenges that eventually become apparent, but that doesn’t stop them from having the same dreams and goals as their fellow students in the regular classrooms.

“Meggy is who she is,” explains Kenny. “As for her disability, it’s a little of this, a little of that. Doctors have mentioned autism. There’s no physiological reason for her intellectual disability. We don’t have a label for it. I think it’s better that way because Meggy is not defined by a disability. She’s more like the other girls than she is different.”  

Meshiel Christian, Alanna’s mom, nods her head in agreement. Meggy and Alanna have been best friends since they met in a self-contained sixth grade special education classroom. Alanna, 20, was diagnosed with a developmental delay and mild cerebral palsy. She experiences autism to a slight degree and at times seems quite shy.  

“Alanna knew all about what to expect for the prom. She knew about getting her nails done, the dress, a limousine, and dinner reservations, all of it. Alanna and Meggy are just like the other girls in so many ways,” Meshiel said.

“I had a moment when tears came to my eyes when I saw her all dressed up, waiting expectantly for her date to come calling,” recalled Meggy’s mom, Mindy. 

“I was a granny-knot of emotions. I said, ‘where’s my little girl?’ but she’s growing up.  For parents raising special needs children — and especially girls — it was a ‘wow’ moment. I was so happy for her because she had the opportunity to go to the prom with her friend Jimmy and just be like the other students. These kids have all been a part of each other’s lives. They were all in there together enjoying a special night. Nobody’s making a fuss because these students have a developmental challenge.” 

Jimmy Rice, 18, experiences autism. He has one more year in the school’s special education program.

“My son has never mentioned that he feels different from other students,” says his dad, Charlie. “He has lots of friends in the school. They might see him in the hallway looking confused once in a while  and they’ll ask, ‘Whatcha need, Jimmy?’ They’ll get him pointed in the right direction. They don’t treat him like a child. They include Jimmy in activities because he’s their friend, not because it’s ‘poor Jimmy.’ Nobody’s feeling sorry for him. And that’s the way it ought to be. Jimmy is just so happy-go-lucky and he has friends who like him for who he is.”

“Jimmy had mentioned the prom a few months ago, but he didn’t have a date. And then Meggy asked him to go with her.  He was so excited to be going,” his mom Cindy recalled.

“His tuxedo was actually his high school band uniform. He’s a percussionist in the band, and he loves it,” Charlie said. “He chose a different cummerbund and shirt, and then Jimmy and his mom sat down at the computer to order Meggy’s corsage online. He took the initiative.”

Alanna met her date Elijah two years ago at an area dance organized for students with disabilities. Elijah is 16 years old and a sophomore in another school. Though he experiences Asperger’s syndrome that affects his ability to socialize and communicate with others, his parents only told him of his diagnosis a year ago.

“Beyond the name, nothing has changed,” his dad, Terry Walker explained to Elijah. “I said, ‘Son, you think different from other kids, but that’s all.’ Sometimes if parents make too much of a disability the children will see themselves as different, maybe use it as an excuse or a crutch.” 

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For Meggy, Alanna and their moms, Prom Day was complete with manicures and pedicures, gowns, high heels, mixed with the aroma of hairspray and perfume. 

Meshiel Christian styled the girls’ hair in her home-based salon. Alanna soaked up the attention, the hair and the makeup like a sponge. “She wants to learn to do hair when she’s done with school,” Meshiel said

Not so much for Meggy, though.

“Mom said I had to wear makeup. I did my own lipstick,” Meggy said proudly. “Except I missed a spot.” 

Mindy did her best to fix it. “Meggy’s not a real girly-girl, she doesn’t like makeup much. She’s more into baggy short and t-shirts. But I try,” she said as she smoothed a smudge of eye shadow Meggy had also applied.

“I had to wear my heels around the house to practice walking,” Meggy said as she struggled with her new shoes. “I had to wear them to the dinner table. And while washing dishes.”

Alanna was completely at ease in her gown and silver sandals. Her neighborhood girlfriends stopped by her house to see Alanna and Meggy dressed up. They gushed as how nice the girls looked. Alanna  and Meggy both beamed.  Cameras flashed.  Then it was time for their grand entrance down the stairs.

Jimmy and Elijah stood proud at the front door, their dates’ corsages in hand. Terry straightened his son’s tie and reminded him of proper etiquette. “How to be a proper gentleman has become a lost art. But it’s not lost on him. In my mind, I’m so proud of him because he’s a sophomore going to the prom with a senior,” he said. 

“Society puts it in your head that persons with disabilities need to be treated different. Keep them separated from the others to keep them safe. You can hear it when people talk to someone with a disability and they talk down to them as if they were a small child. And then they talk louder and slower to them. We shouldn’t do that, but people often do,” he observed.

“Jimmy looks so nice in that tux,” Meggy said. “When I came down the stairs I didn’t recognize him. Usually he wears t-shirt and jeans but tonight he looks like a man!” she whispered to her mom.

The time was growing near for the couples’ departure. The ‘limo’ was waiting. There were dinner reservations before the prom. The young women and their dates stood outside Alanna’s home and posed as a friends, parents, neighbors — even a former teacher — gathered with cameras for what seemed like hundreds of snapshots. It was a scene undoubtedly replicated at thousands of homes across the country on prom night. 

Then it was off to an evening without parents, in a massive hall that had been magically transformed into a wonderland of laser lights, glitter balls, streamers and elaborate decorations that prom committee members spent weeks making after school.  It was a night of loud music with hundreds of their classmates dancing, laughing and mingling during a tender time somewhere between adolescence and adulthood, spiced with formal gowns, tuxedos and sparkly shoes – and a slow dance or two. Meggy, Alanna, Jimmy and Elijah were right in the middle of it. Prom night would be a precious memory for all of them. No labels needed.