Yesterday, while I was celebrating (?) the arrival of my 87th birthday, I learnedf that my Downs daughter had woken up with 3 bones in her right foot broken. Another red-headed daughter and I are heading down to GDC in Gallipolis to visit, and may stay overnight in a motel. (Last Septermber I broke two bones in my own right foot. Spooky, huh?)
We just roll with the punches.
My last child was born in 1971, a Down Syndrome child with a terminal (at that time) mitral heart defect. Trying to make sense of this unexpected event which was traumatic to me (for years I couldn’t mention it publicly without crying), I sought out a psychic reading in an attempt to make it fit into my experience of the world. I just came across something I wrote about the reading, written three years later:
My aura is muddy with fear
the psychic said, three years ago,
as I sat hesitant before him,
searching out dim forces of my destiny.
A two-fold karmic mission
lies in wait for me, he said.
Mine to scale the heights of consciousness
and mine to loosen passive bonds.
Through action shall I free the captive
Soul of eons whose receptive mold has
fashioned the aura which I wear,
passive becoming active, opening up
my third eye and our third world
in a consciousness both higher and raised.
Today is Monday, June 30, 1975 AD.
Three years hence where shall I be?*
__________
The psychic reader was an official minister in his other role, and when my father subsequently died I asked if he would conduct the funeral service and include a “life reading” for him, so I could better understand why my father lived the life he had.
It was clear the psychic/minister was scandalized at the suggestion he bring his psychic activities into the church in a funeral. I wondered how he put it all together in his head, or rather why he didn’t.
I reckon I’m going to have to work on freeing my captive soul the next time round.
(If nothing else works, a psychic reading can be briefly useful).
Current age: 46
A congenital heart defect was noted during Mandy’s first office visit. Again, I asked if there was any treatment for it. “It’s a terminal condition, usually, by eight or nine.”
The words were so frightening to me that I gave up my Graduate Teaching Assistantship for one quarter, and only took one course that spring. Mandy was bundled into a laundry basket with a clear plastic cover, and taken to a friend who watched her while I was in class. This same friend had treated my husband and me to a dinner at Everybody’s restaurant while she stayed home with Mandy and mopped my kitchen floor. With such good friends, anything is possible!
One of my professors told me about an acquaintance who used to say that if he ever was reincarnated he wanted to come back as a Down’s baby. I suspected he was lying. Later I was able to see his point.
The young mother of a mongoloid boy in my church came to call, with informational articles on Down’s syndrome and community resources. Through her we very early were connected with the Elaine Clark Center in Atlanta. Mandy was less than three months old when we began a parent’s group with other parents of variously handicapped children, of different ages. When Mandy was born I had thought bitterly that “No one had better tell me I should be glad it wasn’t worse,” but gradually I came to embrace that belief.
Mandy and I were vacationing with friends in North Georgia in September, when she developed a high fever. It was Sunday, and we drove to the nearest hospital. The on-call doctor listened to her chest, and his expression tightened. “She has pneumonia. These children bring so much sorrow and hardship on their parents and families.” He was angry. It was obvious that he thought she had no right to live. He gave her a penicillin shot, however, and her pediatrician met us at his office in Atlanta and hospitalized her. She was packed in ice, and I had my first of several hospital experiences with her. The helpless pain of seeing one’s child in a foggy oxygen tent, out of physical touch was wrenching. Miraculously, she recovered.
She was back in the hospital with pneumonia New Year’s Eve. The life or death struggle was wearing on us all.
The most painful hospital visit of all was her overnight stay in intensive care, after having gotten into her Lanoxin. She had just learned to navigate around the room, and I had left it out. The torment of that particular night was my guilt. Thankfully, again, she pulled through.
I had had sufficient extreme anguish in the intensive care waiting room thinking of her being isolated with strange faces and stranger machines. I knew she would be terrified. The next morning they allowed me to peek in. She was sitting up, held by a nurse, eating breakfast with vigor, and happily waved to me while she continued eating. That, too, was a lesson.
Mandy was four when she and I visited a planned community in the mountains of North Carolina, preparatory to possibly moving there. A local doctor had a cabin for rent. I contacted him by phone. I explained my circumstances and mentioned Mandy’s heart condition. “It’s terminal.”
“What kind of condition?”
“The usual defect associated with mongolism.”
“There’s an operation that’s been developed for endo-mitral valve defects, the most common heart defect with mongoloids.”
He gave me a name to contact and so it was that, living as I did about three blocks from Emory University’s Eggleston Children’s Hospital, I learned that treatment for Mandy’s terminal condition was available from a doctor in my own neighborhood. But it had to come from an unknown doctor in a tiny backwoods mountain community. Such are the mechanations of fate.
Our pediatrician was re-contacted and referred us to the Scottish Rite Hospital in Atlanta and a heart catheterization was scheduled. It might be too late for the operation. In order for it to work, it had to be performed before a certain point had been reached. They thought it was quite possible that Mandy had reached that point.
Time dragged. The delay of the catheterization, then the delay of feedback of the results. I was prepared for the worst. Surely they would not delay good news for months!
The news, when it was finally delivered, was good. There was still time for the operation. I met with Dr. Williams, who would do the surgery. “Mrs. Mykel, I won’t lie to you. Her chances are 66 to 33 of Mandy making it. There’s 33 chances out of 100 she won’t. Your alternative is to watch her growing weaker and blue and she’ll finally die. It can be pretty hard on the whole family to live through that.”
I knew I couldn’t take it. “I want the operation.” During those days I couldn’t discuss anything about Mandy’s illness without crying. Once when I called the nurse for admission details, I was almost unintelligible. Obviously this was quite frightening for the other children, as well.
Mandy went into Eggleston Children’s Hospital 3 blocks from our home in Atlanta on February 2, 1977. The night before her open heart surgery, parents of another child who had undergone open heart surgery and survived visited us in the hospital. They described the procedure, what to expect and how I would learn the results. They told me that the most dangerous time was when the heart needed to take over on its own again, at the end.
Heidi visited both me and Mandy the day before the operation. She had a huge Raggedy Ann doll she used to demonstrate the scar stitches, and the drainage tubes to expect. For some reason I never understood, Mandy’s chances for survival changed the night before the operation to 50-50. Dr. Williams explained that if she survived there was no guarantee that her heart was reparable. It all depended on whether there was enough tissue in the right place to use in repairing the valve.
Mandy
Early the next morning a tall orderly wheeled tiny Mandy off. This was it. I might never see her again. I stepped toward the elevator in time to see the elevator doors close. Only the little red top of her head was visible for a moment and then hours followed upon hours, when friends, knowing how long the wait would be, sat with me. About five hours later, Dr. Williams appeared with a smile on his face. “She’s doing fine.”
The parents who visited prior to the operation hadn’t told me in so many words about the 24-hour crisis period following the operation. I happened to be in the area each of the two times that Mandy’s heart stopped following surgery. It was successfully massaged back to life. Mandy is well now and has made up for her earlier frail stature due to her bad heart. The pneumonia vaccine has been developed and she hasn’t had a bout with pneumonia for four years, [make that 40 years] and then it was only “walking pneumonia.”
What of the life ahead of her? She’s moderately retarded, which means she can never be totally self-sufficient. On the horizon will be decisions about sterilization, an ethical question I would rather not have to deal with.
to be continued
“You…pantihose!”
Please don’t anyone tell my daughter Mandy that this article exists. Every word of it is true, and that’s the problem. Her flair for the dramatic might re-ignite, even at 29, and there would be trouble again—hilarious perhaps, but too much misadventure for a sixty-five year old mother to experience.
We spoiled Mandy a little, though not on purpose. Not only was she a Down’s syndrome baby, but she was initially predicted to die in very young childhood due to a congenital heart defect. Then, just in time, a new medical procedure was perfected, and open-heart surgery gave her a new life.
Did I say she was also hyperactive? Technically, I mean; really, although she was not officially diagnosed until the teachers had experienced her for a year or two. Ritalin didn’t help her; we did, her two sisters and brother and me.
Mandy was a card from the first getgo. For instance, she early coined the epithet “pantihose” for anyone who crossed her. Looking back, the first of these dramatic episodes occurred while she and her sibs were visiting their father in Atlanta one Christmas. I mean the first really dramatic episode. Luckily I didn’t hear of it until it was all over. It was at her father’s house that the event unfolded.
Apparently Mandy had grown tired of a lull in attention and decided to visit downtown Atlanta. While her sister Sallie was attending to the laundry, Mandy put on her coat and walked a couple of long blocks from her dad’s house to Ponce de Leon Avenue. Somehow shew managed to traverse that busy thoroughfare without getting killed. Mandy was patiently waiting for the city bus when it pulled up, headed for downtown Atlanta. Her heart was almost surely singing as she boarded the bus in anticipation of freedom and new adventures.
It was a blessing that the busdriver suspected something was amiss and notified the police from the phone in the bus. He also let Mandy board the bus without paying.
Meanwhile, back at the home, silence suggested that Mandy was into something. Just what that something was became evident after several frantic minutes of searching –she was missing! A missing persons call to the police happily coincided with the found persons call from the bus company. When Mandy disembarked from the bus her family was waiting.
The children and I were living in Ohio when Mandy discovered Jones Boys grocery store and noted that it was within walking distance from our home. If given half the chance she would streak out the door, take the road through the cemetery behind our house, and pay the Jones Boys a visit. The police inadvertently contributed to her mischieviousness by feeding her treats while waiting for our frantic phone call. After a time or two they didn’t have to wait. They knew where her home base was.
When Mandy began school, new vistas of possibility opened before her. She was taught how to use the phone, and use it she did. Thankfully, 911 was not yet available. But she had been taught how to use zero for help. One slow, uneventful and boring day while her grandmother was with her, Mandy’s fantasies got the best of her. She decided that a nonexistent boyfriend had loved and deserted her, and she called the operator in gasping, heart-wrenching tears, presenting a situation which was understandably difficult for the operator to comprehend.
When I arrived home, two police cars had pulled into my yard (and I mean over the curb, noses pointed toward my front door. Mandy had turned her attention to other matters by that time, and upon learning that no acts of domestic violence, murder or torture had been perpetrated, the officers departed. One-sixteen Vinton Street was becoming a known address in Gallipolis, Ohio.
The next incident that swims into focus involves an old antique gun that had been left in the garage by previous owners. We had recently moved to Athens, Ohio, and when I came across the antique gun (actually old and rusted), I put it up high, near the rafters in the garage. Need I mention that Mandy can find any hidden thing, anywhere? She’d never seen the gun before, but found it and headed down East State Street, toward Super America, gun in hand. She had not traversed half a block before the police received two phone calls about pistol-wielding Mandy stalking down the street.
Fearful that she might shoot, one policeman cautiously snuck up behind her while another approached her frontally. I received a call on that one at work and was told the incident was included in the newspaper’s police report column. Thankfully, that was one column I missed, although several well-meaning friends mentioned it to me.
Mandy has always been very observant and had long ago learned the route her school bus followed. So it came to pass that on the first day of summer vacation that year, when no bus tooted for her, she found it a cinch to traipse off to school on foot. Her journey took her more than a mile and a half, past the Health Department on West Union.
I can only imagine the dramatic tremor in her voice as she grandly made her brief entrance, which was just long enough to announce to the nurses and those in the waiting room, “I’m pregnant!” With that she cheerfully resumed her journey to school, only to be intercepted by a friend who returned her safely home.
Mandy’s sister Elizabeth was watching Mandy not long after, when Mandy’s next adventure unfolded. They had both fallen asleep while watching television. The set droned on and on, and the next thing Elizabeth knew, there was sharp rapping on the front door. Mandy had awakened and, apparently bored by the program playing, had decided to go out dancing. She went upstairs, changed clothes, and walked more than a mile downtown to O’Hooley’s bar, where she joined in the fun until an employee recognized her and drove her home.
Some of Mandy’s past adventures are understandably a blur, but I can’t forget waking up in the morning some time later and discovering that Mandy had deserted her bed sometime during the night and was gone. There was another frantic missing persons call to the police, who were at the house taking information when she appeared on the scene, escorted . The manager of the Shell Station catty-cornered from the house had discovered her asleep in one of his trucks parked behind the station. (She had fancied that one of the employees was her boyfriend and had apparently sought to be near his place of business in lieu of him).
Then there was her disappearance from the house during one of my Friday night soup group meetings. I had just missed her when a police car pulled in with Mandy in handcuffs, in the back seat.She had walked down East State to some halfway house near Children’s Services in search of a classmate to whom she was attracted. One of my soup group friends said she heard one of the officers indicate that she must have broklen free.
“They seemed to think you keep her chained up,” she said.
Apparently the handcuffs were applied after Mandy decided to play hide and seek with the police. The next to the last episode which I’ll share was scary and sobering, but reveals Mandy’s single-minded determination to accomplish her goals.
In addition to keeping Mandy safe, I was encouraged by the specialists to help Mandy take more responsibility for herself since she would soon be an adult. So one September I had an idea. Someone had always put Mandy on the school bus, and I thought this might be an opportunity for her to gain some experience with responsibility. There was a period of about fifteen minutes between the time I left for work and the arrival of her school bus. The day before school started I called the school and determined the bus’s scheduled arrival time. I suggested that if some day Mandy did not catch the bus, the driver should use his phone to report the fact, and I would come home from work to deal with her.
She liked going to school. I did not expect her to ever miss the bus.
I thought the agreement was in place, but in the world of treatment plans and paperwork, my words to the school staff had been processed as eventual possibilities, not present realities.
What happened was that one day Mandy missed the bus after I had left in my car pool. But she wanted to go to school! Up high, hanging on a hook, she spied an extra set of the keys to my car Eureka! She didn’t have to walk to school this time! She would drive!
There was a little hair dressing shop whose window looked out on my driveway. As the owner later related to me, Mandy came out the back door and climbed into the car. The motor started up, and Mandy gassed it. And gassed it. The car slowly rolled back into the street from the driveway, with Mandy racing the engine in a goal-directed fashion. The scenario, witnessed by the beauty shop’s owner and a draped occupant of the chair, brought swift action. Within minutes the police were on the scene, and once again I received a phone call at work. Perhaps you can imagine the content of that call.The school denied any plan was in place, and I was cast in the role of the irresponsible one. If it seems our entire life was in chaos, remember that this was over a period of years and years… But it wasn’t always like that–just most of the time.
TO BE CONTINUED
My son Ian and his wife Laura participated in the final scenario reported here. They were coming home from running errands and turned into our driveway just as a police car was approaching. The cruiser pulled in behind them. Ian was wondering if he had done something deserving of a ticket when he heard screaming.
Mandy was running around the back yard,shouting frantically and waving her arms. Ian and Laura scrambled out of their car and the officer scrambled out of his right behind them. “What’s going on here?” he wanted to know. Ian and Laura were curious, too.
Mandy pulled herself together sufficiently to gasp, “There’s a bat in the house!” With that, she led the way in through the back door and suddenly Laura screamed. At that, Mandy resumed screaming. The bat was swooping again.
In the livingroom, oblivious to all the excitement, lay Mike, Mandy’s boyfriend, asleep on the sofa.
The officer stared. “What’s wrong with him?”
Ian shrugged. “Oh, that’s just Mike.”
Laura pointed to Bubba the cat, who was drinking from a fish bowl whose water level was alarmingly low, and gave a little hysterical laugh.
The officer was bending over Mike. “Is he okay?” Laura explained the sedating effects of Mike’s medication while Ian observed the bat entering and leaving the room, swooping up and down the staircase.
Our representative of law and order decided to take charge of the situation. He assigned Laura the task of checking on Mike, grabbed a broom from the kitchen, and directed Ian to open all the windows. He then began following the bat as it swooped around the house.
Ian later recalled suspecting that the officer was checking all the rooms to be sure there were no more bodies lying about.
Laura got Mike to sit up, Ian continued throwing open windows and doors, and all the while Mandy was running back and forth from kitchen to back porch, issuing tearful wails. Finally the bat man successfully rid the premises of the uninvited creature and then departed, after giving Mandy a fatherly lecture to the effect that bats are our friends.
Mike went back to sleep.
Years have passed, and now Mandy’s dramatics are happily limited to shouting “Yes! Yes! Oh, yes!” a la the Herbal shampoo commercial. But, please remember…Mum’s the word. This article doesn’t exist.
*Appeared previously in Pickin’ Fleas.
With big sister
PLEASE READ PART 4 AFTER 3 — OUT OF ORDER.
The doctor said, “Mrs. Mykel, Amanda is mongoloid.”
I closed my eyes and put my head back against the pillow. I felt a new room open up inside me, a new part of my experiencing self. My identity had changed. I was now the mother of a retarded child. I listened as the doctor droned on about certain medical indications they had checked, because it was important to be sure, right away. He spoke of certain medical problems that would prevent us going home that day. “These children usually don’t have the reflexes other children have, and she may not be able to swallow or sneeze. You may have to force feed her, and she probably won’t be able to nurse.
“It’s common for congenital heart defects to appear in these children during the first few weeks, and there’s no treatment for that. She’ll get respiratory infections very easily, and the Hong Kong flu this winter, for instance, could finish her.”
I looked at him. This was very difficult for him, too. “How severely is she retarded?”
“Mrs. Mykel, mongoloid is mongoloid, and she’s almost certainly mongoloid. During the night we had experts going over her with a fine tooth comb, and there’s really no doubt. She has all the signs, including the simian crease on her palms.” He looked kindly at me. “I’ll be back tonight to talk further with you, and your husband.”
My husband. I reached for the phone. “Come. Come. Come.” I could say no more. I had started crying. The nurse came in. “I understand your eyes are hurting.”
I looked at her, puzzled, and then remembered the great earlier physical pain in my eyes. I shook my head. “Oh, that’s nothing.” The pain had so greatly receded from consciousness as to be insignificant.
The nurse touched my arm. “Go ahead, cry, it’s good for you.” She handed me a Kleenex. “I have a friend who had a child like yours several years ago, and someone sent her a poem in the mail that helped her a lot.”
I looked up. I needed anything. “Could you get it?”
She nodded, and began dialing. As she listened, she wrote, and handed me the poem. It was called “Heaven’s Special Child.”
Several minutes later my husband rushed in. He had been severely frightened by my cryptic tearful call. “Amanda is mongoloid.”
“Is the okay?”
I nodded. “I thought she’d died when you called.” (Later, a friend was to say he may one day wish she had.)
My happy roommate’s joy was a rather overwhelming point to my counterpoint, and I requested a private room. The nurse nodded. “I don’t know if one is available, but I’ll make it available!” She left and shortly returned to wheel me into my own room.
My sister and her husband, puzzled by my failure to call back, had driven to the hospital, and walked in. “Amanda is mongoloid.” My sister endeared herself to me forever by bursting into tears.
“Are you sure? We just got a glimpse of her and she was cute.”
I nodded. Yes.”
And then my baby was brought to me. After our first brief meeting with her after birth, I had no further contact with her as “normal.”
The doctor said her condition was known as Down’s Syndrome, but I didn’t like saying that, or thinking that initially; it was like pretending she wasn’t mongoloid. I received my mongoloid baby in my arms and felt an impulse to protect her from the world. I wanted to “unbirth” her, not to kill her but to protect her in my warm protective environment.
She made small nursing attempts. It was too early for my milk to be down, but I was encouraged by her movements. I felt such an overwhelming need to have her next to me, nestled atop of what had been her resting placed for nine months. I looked at the nurse. “I’d like rooming in. I’d like her to sleep with me.”
The nurse nodded. Two miracles happened that day. First, an unavailable private room materialized for me, and second, hospital rules were stretched so that mother and child slept together within the same hospital bed all night. It was tremendously therapeutic for me, and Amanda seemed quite content with the arrangement..
During those first hours, I struggled inside how to respond to Amanda. My answer came, “she’s my baby.” I knew that caring for her was gambling a big part of myself, but the die was cast. She was my baby.
The doctor returned that night as promised, and spent a half hour providing us with information about mongolism. I was hesitant and frightened, but I had to know. “What are her chances?”
“Ninety to ten.”
In my defensive need to hear the best, I translated those odds to ninety chances of making it. In fact, I recall thinking that those odds weren’t so different than the odds of normal babies. I nodded but did not clarify. He gave me a pediatric appointment sooner than most, to check on any side effects that might show up early.
During the second day, my husband and I grappled with the event. A new baby had come to life, and yet we both felt someone had died. I had a great deal of difficulty processing the event, trying to put it into perspective.
At one point I told myself I should not mention to my friends that Amanda was mongoloid, because it detracted from the greater news she’d been born. A psychologist friend pointed out that my friends would be interested in anything that affected me. We also realized that our expectations for the baby had died. It was the baby of our fantasies who had never really existed this time, who had died.
Taking Amanda, or Mandy, into our lives was a gradual process. I was pretty for almost a month: my pupils greatly dilated from the shock. Knowledge about the condition helped me realize that Mandy was always Mandy, not a girl who had earlier been normal. From the first cell division she was destined to have certain physical and mental parameters. I learned that all the human eggs that a woman has are present at first ovulation, so I figured there was never a chance for the egg that was to be Mandy, to have been fertilized earlier. In a way, she never had a chance. In another way, the only option for her was to be or not to be, and I determined that being, for her, would be a good experience, better than not being.
When my oldest daughter heard that Mandy was retarded, she said, “She’ll always get a lot of attention, without doing anything.”
Those were wise and prophetic words. Our three older children have had to share a large part of their own parenting with Mandy, with natural resentment. The love has outweighed the resentment, however.
CONTINUED : No. 4: TERMINAL HEART DEFECT? (sorry, slightly out of order. Please do read after Part 3
I have a daughter with Down’s Syndrome. I would like for this to be a space for you to share your own experiences with Down’s Syndrome. You can share stories on this page using the “Comment” box below. Also, my posts about Down’s Syndrome are on this page and I invite you to read them and make your own comments. Just click the paging icon above my header image and click “Dear Down’s” to see all my posts. Or click this link: https://nanmykel.com/category/dear down’s/
Mandy at Elaine Clark Center, listening to her teacher.
He used to shop alone at the old A & P at the intersection of Clairemont and North Decatur Road, in Atlanta. His features were those of an old man, and yet someone said he was in his teens. A tentative smile constantly hovered on his face, and he would strike up friendly conversations with total strangers like me.
I went out of my way to avoid him because retarded people made me uncomfortable, and because I couldn’t understand him and did not know how to reply to his enthusiastic questions and comments. I had learned little from my earlier acquaintance with the mongoloid daughter of my boss. I was always a little appalled and disconcerted by Ruthie’s boisterous retarded energy. I observed that parents could love such children, but I was always most comfortable when there was a great deal of distance between us.
As a perpetual student of psychology, I still felt most comfortable with neurotics and even psychotics. I’d choose to spend my time with a psychotic over a retarded individual any day.
Certain unfortunate women, for whatever reasons, have children with “something wrong” with them. “Is the baby all right?” is the most fervent question of many new mothers, and “It’s a perfect baby” the sweetest answer. Other women never doubt the successful delivery of a perfect baby. Like me, I had birthed three perfect babies, and my third had been a “conscious cooperative childbirth.”
I carried a full courseload in graduate school that winter, plus a Graduate Teaching Assistantship. My fourth baby was scheduled for the Christmas vacation, and as a modern liberated woman I had arranged to piggyback my baby and to have it tended during classes by various students. I had also arranged with my obstetrician to let us go home the next morning, ikf everything was okay. And of course it would be. Amniocentesis, if it existed then, wasn’t common and I wouldn’t have had it anyway. I was a young 35 when my baby was scheduled for delivery.
Earlier that fall, while we relaxed in a neighborhood park, we observed a mother and father having a glorious time with a small boy who could not walk. With help he was sliding down the sliding board, with squeals of delight. The joy on the faces of his parents was remarkable. As the mother passed us, she said as an aside, “He was born handicapped.” I respected those young parents for their character. They certainly were stronger than I would have been.
My, I was big and uncomfortable that Christmas. Finally, on December 28, 1971, I went into labor. We had memorized Husband-Coached Childbirth, and Northside Hospital was liberal in allowing father privileges. By this time I knew some things they didn’t teach to nurses, such as how painful lying on the back in labor can be. This was my second ccc, and the first my husband had actually been allowed to coach.The labor and the various stages went like clockwork. In the delivery room finally, I knew to keep my hands on the bars, and to “push” when so instructed. Everything went like the books said. At p.m. Amanda Maria Mykel made her grand entrance into the world.
The doctor and nurses suctioned her and appeared to be checking her out thoroughly. I was going to joke, “Has she got the right number of fingers and toes?” but resisted. I’m like that, usually trying to keep my smart mouth shut so I can’t so easily put my foot in it.
As agreed upon, they gave me my baby to hold while still in the delivery room, with my husband. She was a good-sized baby girl of 8 pounds, with bright red hair. When holding her to me the doctor had said, “You’re entitled at least to hold her, after being such a good trooper.” I was still holding Amanda when a student nurse poked her head in and asked to see her. If I thought it strange for a student to lack experience with newborn babies, I dismissed the thought. Amanda looked perfect to me, just like my others.
I was wheeled to my room, thankful that I had not received general anesthesia and looking forward to going home with my baby in the morning. I knew they would not be bringing her for a feeding until the morning, and I happily went to sleep, anticipating the new day.
I woke to excruciating pain. I had left my contact lens in far beyond the recommended timespan in order to view Amanda’s arrival through the mirror, and the pain in my eyes was all but overwhelming. I spoke to the nurse, and she went to inquire about treatment for my eyes.
During the night I had gotten a new roommate, who was euphoric about her infant daughter. “I waited until I was 38 to have my first, and the doctor says she’s absolutely perfect,” she said. “I’m so lucky.” She was talkative, and in the pain from my eyes I had to mentally tune her out.
I was waiting for Amanda. My husband had gone to work and was coming later in the morning to pick us up. I called my sister but interrupted the conversation. “I’ll call you back. The doctor just came in.”
TO BE CONTINUED
Source: https://www.change.org/…/ohio-state-house-protect-our-sheltered-worksh…
Petition to Ohio Governor John Kasich,
Ohio House and Senate Members.
Ohioans Demand Protection for Sheltered Workshops, Developmental Centers. Ohio Adults with debilitating intellectual or developmental disabilities (I/DD) will be irreparably harmed if some of the Kasich Administration’s Employment First sheltered workshop budget and
policy proposals are enacted.
We applaud the Administration’s Employment First’s goals to increase vocation training, funding, and community employment for Ohio’s Disabled Citizens.However, Employment First has four critical failures: 1) misapplication of the Olmstead Decision and Americans with Disabilities Act (ADA); 2) mistaken justification of replacement of sheltered
workshop proposals by citing recent Federal CMS Regulations; 3) not recognizing that a significant proportion of the disabled cannot work in the community; and 4) decreasing the choices and
increasing the isolation of Ohio’s most disabled citizens. We believe that Ohio should continue to promote the existing sheltered workshop model through policies, direct State funding, and through Ohio CMS Medicaid Waivers.
Employment First is enabling the Justice Department’s misapplication of the Olmstead Court’s
interpretation of the ADA. The Kasich Admiration’s proposed Ohio Medicaid Budget contains many
Employment First proposals. One stated budget goal is to “replace workshops and facility-based day
services with new service models that promote community employment and integrated day
services.” The Administration cites recent increased federal scrutiny for their goal. Specifically they
cite one interim settlement agreement and two “DOJ” lawsuits as support for their workshop
elimination proposals. These DOJ efforts are actually the working of Disability Rights, a “private”
organization funded in part with DOJ funding. This group’s Ohio Chapter, Disability Rights Ohio
(DRO), has threatened to sue Ohio if it does not close the sheltered workshops (among other
issues). Rather than ignore or resist the DRO, the Administration appears to be assisting the DRO’s
misguided goals. As the recent Ohio Transition Plan’s public comment period uncovered, the DRO
does not speak for all of Ohio’s disabled. DRO is misapplying Olmstead’s limited ruling that
individuals with mental disabilities have the right to live in the community rather than in
institutions if “the State’s treatment professionals have determined that community placement is
appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the
affected individual, and the placement can be reasonably accommodated, taking into account the
resources available to the State and the needs of others with mental disabilities.” Olmstead v. L.C. ,
527 U.S. 581 (1999) DRO is attempting to use this narrow residential decision to force Ohio to shut down its non-residential sheltered workshops. This is the exact misapplication that the majority of
the Olmstead Court sought to prevent: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings…Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Id. at 601-602.
Second, the Administration is also mistaken in justifying its replacement of sheltered workshop,developmental centers proposals by citing recent Federal CMS Regulations that convey expectations regarding person-centered plans of care and to provide characteristics of settings that
are home and community-based. The Administration implies without support that sheltered workshops are not integrated in nor support full access of individuals receiving Medicaid HCBS to
the greater community, do not include opportunities to seek employment and work in competitive integrated settings, do not engage in community life, control personal resources, nor receive
services in the community, to the same degree of access as individuals not receiving Medicaid HCBS.
Absent in the Federal Regulations cited is a definite statement that sheltered workshops do not comply with these regulations. In fact, in its last “Exploratory Questions to Assist States in
Assessment of Non-Residential Home and Community-Based Service (HCBS) Settings,” the Federal CMS admits that; “(t)he manner in which each of these services meets the HCB settings requirements may vary.” The Administration seems to fudge this ambiguity by noting that “the CMS
is currently working with stakeholders to clarify expectations of this new rule for day activity services, and additional guidance will be forthcoming.” It also ignores that many Ohio Disabled
citizens choose to remain in sheltered works because it meets their unique needs as outlined in their person-centered plans. Statistics show many individuals with I/DD have not shown an interest
in supported/competitive employment, and the majority who have tried it, ultimately return to sheltered employment.
Third, the Kasich Administration’s Employment First policies and budget fail to recognize that a significant proportion of disabled Ohioans simply cannot work in the community. These Ohio citizens suffer from various debilitating intellectual or developmental disabilities including autism, moderate to severe mental retardation, and cerebral palsy. As a result, the Administration’s contention that mainstream employment opportunities exist for all or even a significant number of
developmentally disabled persons is largely wishful thinking. It’s hard for anyone to get a job these days. In many cases, the newly “employed” individual ends up leaving a 29-hour a week job in a sheltered workshop for one where the individual only works one or two days a week for four hours a day. Working eight hours a week washing dishes alone in a restaurant kitchen is hardly integration into the community. Many families of the participants maintain that the sheltered work
shop programs provide them with useful skills and meaningful activities, and that there is nothing about them that segregates or isolates people.
Fourth, the Administration’s Employment First policies and budget will actually decrease choice and increase the isolation of Ohio’s most disabled citizens. Sheltered workshops throughout the U. S. provide a safe environment for adults with I/DD to work, interact with their peers, and gain a sense of accomplishment. These facilities also provide transportation, off-site day habitation programs, and opportunities to for new experiences including taking a vacation or going on a camping trip. Individuals who choose to work in sheltered workshops are happy, safe, fulfilled, and are among their friends and peers. As the other disabled co-workers obtain or are forced to obtain “employment” in the community, the lower functioning disabled citizens that remain will become
more isolated. If sheltered workshops employing hundreds of developmentally disabled persons throughout the state are closed, most of those participants will end up in day-care nursing homes,
many of which offer few skill-based activities, much less any sort of wages for performing them. It is also about forcing people into a theoretical model of care, which, as usual, denies them and their families/legal guardians any say in that model. Community employment is not the answer for everyone. We need sheltered workshops! We should be creating more employment opportunities for people with disabilities – not eliminating options.
Olmstead and the ADA were not meant to take choice or any other kind of employment option away from persons with I/DD. Let your voice be heard and speak up for those who cannot speak for themselves. It is our responsibility to provide opportunities and support for individuals with
developmental disabilities. Do not deprive them of their choices and force them into settings which will diminish their quality of life. Help us protect sheltered workshops across Ohio and the nation!
Respectfully Submitted,
This petition was delivered to:
My computer, my printer, my digital phone, my video camera, my internet connection, my telephone, my router, my monitor have connecting cords that easily get tangled and are often difficult to follow to their correct position. The secret to achieving the goal of correct, transparent even, smooth functionality is clarity of motivation. Both the goal needs to be clear and the motivation free of skullduggery. If you should find yourself in the lethal hodgepodge of scrambled goals, alternating motivations, red herrings, skullduggery and outright lies, not to mention the little hidden rat critters chewing away at ethics in the dark recesses of the human libido and greed, then there’s no way a democracy can survive. Adding pet bills to important legislature is just a common referent, but by no means the whole works.
Who or what is behind privatization, for instance? Who or what is behind the destruction of sheltered workshops for the disabled? “They’re segregated from the normal population” is one rallying cry. Pardon my French which I’m just thinking. “More money should be put into the Bureau of Vocational Rehabilitation” so the higher functioning ones can really realize their potential” is another rallying cry. Maybe to produce more money for charter schools? I don’t know. Maybe it’s “cut back on government aid to the needy.” I’m not that naive. Money and greed are winning out. We can see what it’s doing to our prison system.
Headlines on the Feb. 11, 2016 edition of the Athens (Ohio) News read “Board: ATCO Inc.’s days are numbered.” ATCO (Advocacy, Training, Career, Opportunities) has been a day service provider for people with developmental disabilities since 1969. Services include community inclusion, recreational activities, life-skills training and nursing services. Twenty-six counties of 88 in Ohio have already been privatized.
Institutionalized residents of the Gallipolis Develpmental Center in Gallia County have been utilizing a workshop building which costs one dollar a year. It is within minutes from GDC. That workshop has been shuttered and plans are for residents to travel 70 miles roundtrip to a privately owned workshop in Wellston, Ohio, where untrained staff receiving lower pay will oversee the residents. Parents were initially informed that the GDC staff who have been working with them will continue to do so. I’m not sure how many of them have been told the truth of the situation. About 3 weeks ago the GDC staff itself were under the impression the new workshop was going to be opened the next day. It still hasn’t opened, and last week a busload of residents were driven to see the new workshop and returned quite frustrated at its incompleted state. (In the meantime, the nearby former workshop available for a dollar a year has been closed.)
The “upfront” rationale for the change was a ruling that nonprofits receiving medicaid services couldn’t monitor their own services. So wouldn’t it be easier to change who monitors them than to disassemble them? Another verbalized rationale for disassembling the workshops is because they’re “segregated.” I say UNSEGREGATE THEM! Let any “normal” person who wants to participate, participate! And how many of the public businesses of education and recreation are feasible for the developmenally handicapped? Barf! My 44 year old daughter with Downs Syndrome was born during a time when outreach services were readily available. Athens as a community has been proud of its relationship to the developmentally disabled.
There is too much distrust and finagling going on between our “representativces” and our front line folks, Perhaps in a moment of guilty feelings a new law has been passed that no resident of a developmental center shall be served half meals. As though they were protecting the residents from being mistreated by staff? Nothing like that has been happening, My 5 foot daughter weighed an unhealthy 203 pounds before going into GDC. Within a couple of years she had reached her goal weight of 117 pounds, and she never asked for more food on her half-size servings. With the recent changes at the sate (and maybe federal) level she already weighs 138 pounds, and climbing. The flavor of our representatives appears to assume their certified, trained and dedicated staffs either don’t know what they’re doing or are taking advantage of the disadvantaged. By assuming that the very caring long-term trained and certified staff are harming the residents, our representatives are trying to take the spotlight off their own damaging actions. I inquired and even the physician is not allowed to order half sized meals in medical conditions.
I’m thankful for my Down Syndrome’s daughter’s first 44 years. A humane society made her transition into adulthood relatively painless. During the dawn of the one-percenters, however, that care is insidiously being compromised. Much as the mentally ill years ago were shoved out into the community, many of them from the only homes they had ever known; so too the community workshops, where they gather with their friends, labor at tasks of which they are capable, and dine together are in the process of being closed down.
Some excuses sound rational, many smell of politics. A humane cultural endeavor of which our communities could be proud is being demolished. We were so lucky that our Downs daughter was born during an era which offered hope for a consructive future for the mentally challenged–or disabled, or handicapped, or retarded–however you wish to label them. It’s reached beyond the silent political stage in which the deconstructionists had a head start in paving the way for scraping a humanitarian system that was beautifully engineered and carried out. And the community felt good about the caring they showed. Now this is ugly, and the ends don’t justify the means of supporting a system to pamper the oligarchy.
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