Down’s Syndrome

All posts tagged Down’s Syndrome

Heaven’s Very Special Child — Part One of Six, Reblog by Nan

Published January 16, 2018 by Nan Mykel

A meeting was held quite far from Earth!

It’s time again for another birth.

Said the Angels to the LORD above,

This Special Child will need much love.

His progress may be very slow,

Accomplishments he may not show.

And he’ll require extra care

From the folks he meets down there.

He may not run or laugh or play,

His thoughts may seem quite far away,

In many ways he won’t adapt,

And he’ll be known as handicapped.

So let’s be careful where he’s sent,

We want his life to be content.

Please LORD, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they’re asked to play,

But with this child sent from above

Comes stronger faith and richer love.

And soon they’ll know the privilege given

In caring for their gift from Heaven.

Their precious charge, so meek and mild,

Is HEAVEN’S VERY SPECIAL CHILD.

by Edna Massionilla December 1981 The Optomist- newsletter for PROUD Parents Regional Outreach for Understanding Down’s Inc.

The above is Part One of  six.  It has been hidden on one of my many pages and rarely visited.

 

The Upside of Down…

Published February 24, 2016 by Nan Mykel

Local Heart, Global Soul

Last weekend I was sorting out some photos of local city landmarks taken last summer during some of my walking adventures.

Suddenly I spied some photos that I’d meant to divert into a separate folder on my computer and mark up as a future blog post.

Somehow I missed these at the time and now it’s highly overdue that these get a little publicity in my little corner of blogsville.

These amazing billboards  had been put up in the center of the city and they captivated not just my lens but also my heart.

There was a text billboard with an explanation of the purpose of the exhibition, here’s a copy of the text:

The 101 portraits in this exhibition consists of, are meant to provide a peek into the world of Down Syndrome.

A world that turns out to be utterly different from the usual stereotypes: pitiful children with…

View original post 248 more words

IF the SNAKE ….

Published February 21, 2016 by Nan Mykel

 

                              IF THE SNAKE SHOULD FALL ON YOU:  TRAUMA

Out of the Blue


        Out of the Blue

I had to write a note on trauma when I saw this photo. When I did research on my book on incest, I learned about trauma and realized that I had once been traumatized.  There are degrees of trauma–sometimes the birth of a stillborn baby, rape, incest, an automobile accident, combat, violence. Those severely traumatized are labeled PTSD.  I was not significntly traumatized by my own damaging experience of incest; I came close to being traumatized during a mad late-night ride with my drunken father, but in reviewing the various  definitions,  I  realized that I was traumatized when I gave birth to my dear Downs Syndrome daughter 44 years ago.  One of my main symptoms was  feeling vulnerable to bad things happening, out of the blue.  I no longer felt safe. I felt like fortune had turned against me and anything could happen.

Janoff-Bulman and Frieze (1983) described trauma  as “the abrupt disintegration of one’s own inner world…the shattering of very basic assumptions that victims have held about themselves and their world.  “

Maddock and Larson (1995) referred to trauma as “an emotionally intense experience that occurs without a suitable framework of meaning within which it can be placed for understanding and mastery.”

According to Van der Kolk (1987), “The essence of psychological trauma is the loss of faith that there is order and continuity in life…the belief that one’s actions have no bearing on the outcomes of one’s life.”  And I have to feel great compassion for the thousands of new mothers of microcephalic infants, due to the recent mosquito (Zika) infection.  I wanted to write a poem to express my feelings about them , but there seemed to be no words for the tragedy.

Well, I had to get that off my chest since the photo was such a metaphor for impending trauma.

Neglected Page

Published January 20, 2016 by Nan Mykel

mandy red shoes.jpg

THIS IS MANDY MYKEL

I’ve been so busy with different blog pages that I have badly neglected my Downs Syndrome page. Tonight I discovered two excellent downs blogs and have included a couple of excellent resources from the noahsdad blog on my page. Another blog that I have found stimulating is http://www.meriahnichols.com/aboutcontact/

I recently changed the name of this page to Dear Down’s.

 

My Regret

Published October 5, 2015 by Nan Mykel

My main regret about having Mandy is that my other three children got short-changed. I don’t know where I would have gotten the energy from, but  I wish somehow I could have done things differently.  When Mandy was born one daughter was 8, my son was 4, and my younger daughter was 3.  And I was working onMandy 2006 christmas card my Ph.D. in psychology.  Mandy was born with what at the time was a terminal heart defect, common to children with Down Syndrome, and I was a wreck. (Soon thereafter a procedure was developed and Mandy underwent a successful surgery).  All the children were aware that I couldn’t talk about her physical condition without crying, which ushered a lot of anxiety into the household. My oldest daughter briefly decided she wanted to be a pediatric heart surgeon for this very reason.  I let my oldest wait with me at the hospital through the surgery (they had given Mandy a 50-50 chance of surviving).

When the surgeon reported the operation a success [after which her heart stopped twice in recovery], I called my younger daughter at her elementary school to give her the good news.  My daughter said the loudspeaker just said for her to come to the office, and all the way to the principal’s office she prepared herself to hear that Mandy had died.

We were very lucky the family survived the trauma, but the marriage did not.  I had therapy and the support of friends, but in adjusting to the trauma of Mandy’s unexpected condition I rationalized that if she could have a happy life then her birth would be “all right.”  If not, then it was unthinkable. That decision, (to assuage my feelings of guilt) led me overall to put her needs before my other children. At the moment I drive 2 hours every Sunday to visit Mandy in a wonderful developmental center and take her out to lunch.  I let my relationship with my son dwindle to the point where he recently disowned me.  I have regrets.

Keep the Workshops Open

Published October 2, 2015 by Nan Mykel

If you become aware of a movement in your state to close workshops for the mentally challenged, please oppose it.  There is a movement afoot in Ohio, and I understand they’ve put some mentally challenged individuals on their board to mislead with the idea that the clients don’t want the workshops, where they can make a little money each week and partake of meaningful activity and socializing during the empty days that stretch out.  Experiences with Down Syndrome by a mother–a page on NanMykel.com welcomes all personal experiences and pasttimes..

Nan’s Early Experience

Published May 12, 2015 by Nan Mykel

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.” He 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, bvut 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 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 in 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 call 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 prophedtic 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.
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 she 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 experiences with her. The helpless pain of seeing one’s child in a foggy oxygen tent, out of physical touch. 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 withy 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 there. 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 hert 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.
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, 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.

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