Daughter Mandy on a
home visit painting at
Patti Mitchell’s Art Studio
“Passion Works” in
Athens, Ohio last week.
Some babies with Down syndrome face specific nursing challenges. La Leche League International explains poor muscle tone can interfere with a good latch, and a lack of interest in feeding requires more coaxing from moms. But that doesn’t mean babies with Down syndrome can’t breastfeed—and Ella Gray Cullen wanted to make that clear.
Cullen is the force behind Julia’s Way, a non-profit dedicated to reimagining what’s possible for those living with Down syndrome. As the name suggests, it was inspired by her daughter, Julia, who’s 1.
The organization’s first project, a video called Why Be Normal, was released in March. And now, Cullen is focusing her efforts on breastfeeding.
After conducting a survey among mother of babies with Down syndrome, Cullen learned 20 to 30 percent of them were told their babies were “not as capable” of breastfeeding as other children. That perception needed to change.
“Our project is aimed at both mothers and medical professionals, seeking to empower mothers to advocate for themselves and their babies and to educate medical professionals about the unique challenges some babies with Down syndrome encounter,” Cullen writes on her site. “To that end, we also plan to provide concrete tools to both mothers and professionals.”
Phase one was awareness: sharing a gorgeous photo shoot of 10 moms defying the stereotype that babies with Down syndrome can’t breastfeed.
BREASTFEEDING TO SHATTER STEREOTYPES
As many moms know all too well, nursing doesn’t come easy to every baby. That can be especially true for babies with Down syndrome, whose poor muscle tone may interfere with a good latch. But that doesn’t mean those infants can’t breastfeed—which this group of women breastfeeding babies with Down syndrome set out to show.
A month ago, a group of moms got together on a Massachusetts beach for a breastfeeding photo shoot. Like the other breastfeeding shoots we’ve seen, this one featured colorful gowns and a beautiful backdrop. But it’s making waves for something remarkable: every baby involved had Down syndrome. From: The Bump
HEAVEN’S VERY SPECIAL CHILD
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.
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, 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 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 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.
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.
Ups and Down’s*
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.
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 wshose 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.
SCARY CURRENT MOVEMENT AFOOT
There is a scary new movement afoot IN OHIO, AT LEAST, to close workshops for the disabled and also to transfer institutionalized intellectually challenged individuals to the community, as was earlier done with the mentally challenged, when they were forced from the institution to unstructured community situations. The picture will be grimmer yet if community workshops are also closed. Please keep your eyes open.
More re Finn: (excerpted from http://www.lisamorguess.com):
I’m still trying to find a groove with Finn. I don’t feel that unschooling can really work for him, because he is absolutely not self-directed. He would be content to play on his iPad all day, every day, maybe for the rest of his life. He’s curious about the world around him to a degree, but he has no innate interest in or motivation to learn to read or count or write or any of that boring stuff, nor does he have any concept of the value of those things, so educating him is a whole different ball game than educating his typically developing siblings. I have to be very deliberate in teaching him, and I have to find ways to do it that are interesting and palatable to him, and right now I really have my work cut out for me because I think the last few months of school really tweaked him and turned him off to the whole idea of sitting down and learning. So we’re taking it slow, and sometimes I feel a little panicked because I feel like we have so much lost ground to make up, and so much new ground to cover. So I have to stop periodically and take a deep breath and remind myself that all we have is time, and there is nobody and nothing we need to catch up to.I’ve taken up knitting.
The first thing I want to say – and I’ve had this on my mind and have been wanting to write about it for some time – is that I’ve moved beyond feeling, and insisting to the world, that Down syndrome doesn’t define Finn. You know what? Down syndrome absolutely does define him. Down syndrome and the particular ways it manifests in him shape so much about him: it shapes how he experiences the world, it shapes how the world experiences him, and to a very large extent – possibly to a greater extent than any other single thing – Down syndrome will influence and even dictate the path his life takes. So, to continue to say that Down syndrome doesn’t define him is both an untruth and a disservice to him and to all people with Down syndrome. It’s a disservice because it’s dismissive (by and large by those of us who do not have Down syndrome) of his experience and his identity, and moreover, it relegates Down syndrome to something that is negative and undesirable. We would never insist that someone is not defined by something that we see as positive (he’s not defined by his wisdom; she isn’t defined by her compassion); we only say this about traits that we perceive as negative, and we say that a person isn’t defined by things we see as negative as a way to try to diminish their impact on the person in question, and really, their impact on us, because those things make us (the people who do not have those particular undesirable traits) uncomfortable.
I’ve begun talking to Finn about Down syndrome. At this point, I really don’t think he has any understanding of what Down syndrome is, or even how it pertains to him, except that he is aware that he looks like other people with Ds; when he sees pictures of other kids with Ds, he’ll point to them and say “Finn! That’s Finnian!” In any case, I want to instill in him from this young age that he has Down syndrome, and that he should feel good about it. He should own it, damn it. I never want him to perceive Down syndrome as something negative, something he wishes he didn’t have. I never want any of my kids to wish they weren’t who they are.
So, this leads me to the People First Language issue. I admit that I’m wrestling with it. Amy Sequenzia makes some excellent points in her article (if you didn’t click on the link above, go read it now: People First Language and Ableism), but I feel like some nuances are overlooked.
I still tend to use PFL and appreciate when others do – unless told otherwise by directly affected people (for instance, I am now very aware that autistic people prefer to be called “autistic” and not “people with autism”; I respect this, and therefore have made that change in the way I talk about autism) – where it pertains to Finn. There are a few reasons for this: first of all, although I do not see Down syndrome as negative or undesirable, and I accept and even embrace that Down syndrome does, in fact, define him, I’d still like to think that our shared humanity is the thread that binds us all together, and what separates us from other beasts. Maybe this is a Pollyanna-ish view, I don’t know. In my mind, it’s not that I don’t want people to see his Down syndrome, or that I want to attempt to diminish its impact on him, it’s more like this: if you can see his humanity and see how his humanity relates to your humanity, then hopefully you can see him with compassion – not pity or disdain – and hopefully you can see that he is a whole, complex human being, and not a subhuman defect.
There is also the problem of word usage and how awkward it can be. I’m talking about grammar, I guess. See, while autism has an adjective equivalent (autistic), Down syndrome does not. So when someone says, “He’s Downs,” or “the Downs kid,” it grates on the ear (at least mine) because “Downs” is not an adjective. Plus, I guess I have somewhat of a problem with using the name of the guy who believed and promoted the notion that people with Down syndrome were actually an entirely different species – a sort of subhuman species that had manifested from some sort of reverse evolution – to identify my kid. Yes, I still use the term “Down syndrome” to describe my son even though I’m not a huge fan of Dr. John Langdon Down’s ideas, but only because it’s the term that most people are familiar with. If you say, “Trisomy-21,” most people have no idea what you’re talking about.
Anyhow, so there is no adjective version of Ds or T-21 that I’m aware of that would make “_______ person” sound right, from a linguistic standpoint. Ds isn’t the only disability like this; what about cerebral palsy? Would you say, “she’s cerebral palsy,” or “the cerebral palsy man”? Or pretty much any “syndrome.” How about Williams syndrome or Fragile X syndrome or Prader-Willi syndrome? None of those have adjective equivalents, so it’s just awkward to use them as adjectives.
So, let’s just say “disabled” then. I can get on board with that, except that it’s just such a negative word. I mean, if you disable a smoke alarm or a machine or a bomb, you render it inoperable. Are disabled people inoperable? Do they no longer “work”? No. And if you think about it, all of the most common “dis” words in the English language are negative: dismember, disenfranchise, disrespect. In fact, the dictionary defines the prefix dis as follows:
I wish we had a word that wasn’t itself so negative. “Differently-abled” doesn’t work, either, because in its insistence on focusing on ability, it’s ableist. So where does that leave us? I don’t know. I guess we’re stuck with “disabled” and all of its inaccurate and negative connotations.
Perhaps I’m splitting hairs over language and terminology, but I think all of these subtleties are worth contemplating. A big part of the problem is that, yes, it’s very often – probably almost always – people who are not disabled who are deciding the language that gets used. A lot of them, like me, are parents of children with one or another diagnosis – parents who do not themselves have those diagnoses. A lot of us are thrust into this world of disability, and we’re trying very hard to be advocates for our children, and, yeah, we fuck up along the way. Speaking for myself, having Finn was my first ever experience with disability. When he was born, I didn’t know Down syndrome or disability from my ass. God, some of the things I thought and said and felt in the beginning truly make me cringe now. But there was never a single moment when I did not love my son fiercely, and all along I’ve tried to advocate for him and for the larger disability community. I heard and read things over the years that resonated with me and made perfect sense to me – like People First Language.
Advocacy changes; the language that we accepted a few years ago is now offensive, so now we advocate for new language. That language will one day also be offensive, because it will be misappropriated and turned into slurs, or it will take on new ableist connotations. Hot button issues of today will be replaced with hot-button issues of tomorrow – perhaps issues that we can’t even conceive of today.
So, what I’m getting at is that it’s just not so cut and dried. Being an advocate and a true ally is an ongoing, lifelong process of listening, reflection, introspection, contemplation, and growth.
The post People First Language and Identity: There’s More to the Conversationappeared first on www.lisamorguess.com
Adopting our new daughter who happens to have Down’s Syndrome For the full post go to:
….But isn’t that how it is with any new child? You never know what is to come. He might be a prodigy, might be bouncing off the walls, he might struggle through school for no reason at all. Each child is different and perfect in every way. There is never any way to welcome a new child and expect it all to be planned out. Its OK to dream for our kids. To want the world for them. That’s our job as parents. But that doesn’t have to stop because your child has a disability. I am constantly dreaming about how Jana will be as she grows. What new experiences she will have. Yes, there are times when I freak out and know that it will not be easy. But it won’t be all that easy for my other 3 kiddos either.
Having a child with a disability doesn’t have to make you settle as a parent. It just means that God trusted you even more to care for such a special little person. Take pride in that! We get to experience a trip that so many never get to travel. Its exclusive, and has a lot of unexpected and exciting stops. It is the trip our travel agent knew would be perfect for us! We just need to sit back and enjoy the ride!!
I’ve used this word in the past. I’ve said to to describe things I didn’t like or agree with. I’ve said it with no regard to how it could hurt someone to their very core. I have added to the spread of this word. Since Jana has come into our lives, I cringe any time I overhear this word used. A small part of my breaks because I know that most likely one day I will pick Jana up from school and she will be in tears because someone called her that name. I will have to hold her and explain to her that people are mean sometimes. And that they don’t always understand how bad words can hurt us. Then I will send her back to school and pray another day will pass where she isn’t torn down.
Today, March 2nd, is national Spread the word to End the Word day. You can actually visit R-Word.org and sign an online pledge to promise to not use the R-word again. You can read stories from amazing kids who have been broken by this word. To see how such a small word can dramatically affect so many lives.
Join the movement and help remove this demeaning word from our society!!____________________
The doctor had said “Down Syndrome,” but I thought
“mongoloid, mongoloid,” to keep denial at bay.
I phoned my husband from the hospital. “Come, come.”
And I remember opening my arms to receive her,
wrapping her in a cocoon of love as she slept
through the night on my belly, safe for now
from the world. My belly, my baby.
MY NAME IS MANDY by her mother Nan Mykel (Illustrations to follow)
This book is dedicated to my daughter Mandy who was a cute baby and is becoming a good, competent adult.
I was a baby when I was born. The nurse washed the blood off my hair and put stuff in my eyes like she did with my niece Julia Ann.
When I was little and cried some my mother washed me and changed my diapers. She said “Rub-a-dub-dub, Mandy in the tub” when she washed me. I am my mother’s daughter. I’m sorry I kicked her when I was inside her.
My daddy held me a lot when I was little.
I have red hair and blue eyes and I have two sisters …
And I have a big brother…
I love my family! I like to ask my mother why I was a baby when I was born and she says, “Just lucky, I guess.” My mother is funny. I started school early, and took my first steps down the walk bars at school.
Once I started walking I haven’t stopped! I like to do things! I even worked for Pro Mow one summer, cutting grass. I wore boots.
I like to hear about when I was a baby, a lot. I like to see pictures of me when I was a baby, and a video of my family a long time ago.
I have a good memory. I can remember my friend Scotty at the Guiding Hand School in Gallia County.
I love my family, even though they sometimes play tricks on me!
I was in Special Olympics when I was in school. I have had my picture in the newspaper and other places, many times.
I don’t think I’m a show-off. Do you?
When I was little my father took me and my brother and sisters to Walt Disney World in Florida. Here is a picture of when we got back:
When I was older my daddy took us to Walt Disney World again. It seemed like Mickey Mouse and some of the others remembered me from when I was young. I had lots of fun both times.
I don’t think I’m a show-off, do you?
As you can see, I like to dance. One year I won first prize for dancing at the International Street Fair in Athens. I won a big O.U. sweatshirt.
I am learning how to cook, and I taught my mother how to make a good drink out of ice, strawberries and skim milk. I also taught her to bake apples in the microwave.
When my Mom talks to somebody I walk right up and put out my hand and say, “Hi, I’m Mom’s daughter, but usually they know that.
Here is me and my friend Kelly.
I am good at remembering what actors on tv have been in different shows. My favorite tv program is Days of Our Lives. I am really happy when good things happen to the people I like on the show, like Sami getting Austin.
I know a lot of people in Athens and they know me. They say hi to me and I say hi to them.
I work in the Mail and Packaging Department at ATCO. My boss’ name is Carol. I do good work. My whole family goes to the beach in North Carolina in the summer.
I don’t think I’m a show-off. Do you?
I like doing WORD FIND PUZZLES, and copying things for the shopping list. I like to write words. I can read some, too, like Dr. Seuss’ Green Eggs and Ham. I am stronger than I look, and can open lids for my mother and help carry heavy things, like my oxygen tank.
I go to sleep during the day unless I wear my sleep mask and use my oxygen machine. They help me to work and play in the day time, not sleep!
Here I am at Mrs. Hare’s camp, where I had lots of fun!….
I graduated from Beacon School in Athens…..
I love people and when my sister Lili married Allen, I made a toast that people seemed to like.
I have two nieces. I am an aunt. When Julia Ann was born, I was in Atlanta and was at the hospital with my mother and father. Julia Ann liked me, and held my finger. Later on she kissed my cheek. Lili let me hold her. I like being an aunt. Mother says being an aunt is better than being a mother, because you don’t have all the poop to clean up. I don’t know about that. I tease my Mom sometimes and tell her I’m going to have a baby. Then I laugh.
My niece Julia is sound asleep. Shhh! Don’t wake the baby!
When my sister Sallie got married at the Quaker meeting, I stood up and said how much I loved her and John. John has a son, Matthias. I guess he’s my nephew now. He’s funny.
I had a yellow cat I loved. His name was Ding Dong. I had him since he was a kitten. His mother is Princess Leia. One day he followed me to the bus stop and ran out in the road and was hit by a car.
We buried him in the back yard and I keep flowers on his grave. When I was 27, my sister Lili gave me some pretty flowers for Ding Dong’s grave. I love her and I love Ding Dong. I put flowers on his grave now every year. Sometimes when I think of Ding Dong I get sad and miss him, but I know he’s not in pain and is ion cat heaven. I try to remember the fun times we had together and I don’t cry then.
I like remembering when I was a baby and I like growing up, too. I wash my cereal bowl right after having breakfast every morning, and help my mom by vacuuming. I wash my hair by myself, and lay out my clothes for work the next day. And I am remembering to wear my mask every night! I help make my bed in the morning, too. One summer I worked at Pro Mow and wore boots and cut grass. When my mother was sick I helped her. She was my patient and I was her nurse. I liked being a baby but I like being grown and able to do things more!
My grandmothers and grandfathers and my aunt Nikki are in heaven and I miss them like I do Ding Dong, but I’m growing up and I can act calm when I think of them now. That’s part of growing up, I guess. But I want to live a long time before I go to heaven!
This is the end of this part of my book but not the end of me!
WHAT DO YOU THINK OF THIS QUOTE FROM A MOTHER-IN-LAW in a work of fiction?
‘Let’s face it, Derek–however much you loved Laurie, she was an encumbrance.’
That had stung him, and he answered her with a rare anger: “She most certainly was not! We never thought of her as that!”
‘Never?’ Enid’s eyes were shrewd–…but her voice was not unsympathetic.
‘You wouldn’t be human if you hadn’t thought it sometimes, Derek,’ she had said. ‘If Laurie had been a child of mine, she would have had to go into residential care–but then, I had the Glenalmond to run… You did what you both thought right, and Laurie turned out to be a lovable girl in spite of everything.
‘But did you ever think through what you were doing? Did you realize that you were voluntarily tying up your whole future? That’s what used to worry me. Between ourselves, I’m thankful for your sakes that Laurie died young…..it seems to me that now the poor child’s gone, the two of you can start living your own lives for a change,’
There was something more personal that he felt, though; something so unaccustomed that at first he was hard put to identify the sensation that had begun to lift his spirits. It was years –fifteen, to be exact–since he had known what it was to be buoyed by optimism.
Even though he missed and mourned for Laurie he had felt, ever since she had been buried, a lurking sense of relief that the problems she represented had gone with her. At first he had refused to acknowledge the thought. When it persisted he had declined to dwell on it, out of loyalty to his wife and their dead child. But now that Enid, tough old bird that she was, had not shrunk from putting it into words, he was ready to admit to himself what he had denied to her. Yes, Laurie had been a burden.
He had never discussed this burden with his wife. It wouldn’t bear discussion. From the moment they were told of the Down’s diagnosis, one-day-at-a-time had been their agreed philosophy. But Derek had looked ahead, as any life assurance man does, and had been alarmed by what he saw.
Caring for a mentally handicapped child was demanding enough. The prospect of caring permanently for a mentally handicapped adult was dauntingly different…..There were sure to be some sad months ahead, for all the family. But it was secretly exhiliarating to think that once [his wife’s] paramount grief had eased, the two of them would at last be able to plan an active, interesting future….(“This Way Out,” –fiction–by Sheila Radley, Scribner’s, NY, 1989, 10, 11, 12).
I accidentally came upon the above exchange while reading Sheila Radley’s murder mystery, and it seemed to address a problem I had in dealing with Mandy’s birth that I thought it might help someone else in the same struggle I had. When she was born, I had immediately focussed on protecting Mandy and giving her as good a life as possible, period. A few days before the open heart surgery when she was six, I told the psychotherapy group I was a member of that I had always felt that I would go crazy if Mandy died. I took it for granted. Then part of what I was really afraid of and couldn’t forgive myself for, if it happened, came to light: was that if she survived I might fleetingly feel a tad of disappointment, and if she did not survive surgery I might briefly feel a little glad. That’s how far away I was from accepting myself and my true feelings. (She survived and I only felt happy). But I had been living in fear that unconsciously I didn’t “really” love her.
NEXT: Mandy’s school’s response to her operation.
I was so thankful when accidentally informed that there was surgery available now for Mandy’s heart condition. I fully expected her school’s newsletter to inform parents of the good news. As far as I know the director never told any of the parents. I wonder if she didn’t want to put them with a difficult decision (for them), or what. She had earlier spoken of folks from the school visiting Mandy in the hospital, but she must have changed her mind.
For me, what would really have been almost impossible to bear was having to watch Mandy slowly losing life’s energy from her heart defect, until she died. (Now that I think of it, her pediatrician neither informed me of the new surgery nor the new pneumonia vaccine.)
…While still in the hospital I had a nightmare, in which I was trying to communicate with others and couldn’t make a sound. That dream scared me so much that when I woke up I grabbed the phone and resigned my teaching assistantship.
As I later discovered, the chromosomal abnormality associated with Down Syndrome is sometimes related to x-rays. I had been recovering from pneumonia and underwent x-rays when the pneumonia was diagnosed and also when they suspected it was cleared.
Excerpted From NPR site a year ago
I have a son with Downs Syndrome. I know a lot of people with intellectual disabilities. Without exception, they love to work. Probably more so than the average person, because work can give them a sense of competence they can’t get elsewhere.
They all work in sheltered workshop settings. What I don’t understand is the dogma that this kind of work is unacceptable. This flies into the face of what I see nearly everyday. People who are very happy to work and proud of what they do.
I have seen the alternative, where the sheltered work programs are shut down. And people like my son are warehoused in programs that “include” people with intellectual disabilities by making them sit most of the day in a stuffy building playing with scraps pf paper and puzzles, and getting “included in the community” by a field trip to the Mall.
I wonder if the zealots who want to close down these kind of programs really work with the more disabled of the population ?
Just a quick note… From
I wanted to let you guys know that 4 Years has been re-uploaded and is ready for sale.
About 4 Years…. 4 Years is 142 pages of my essays, original artwork and photographs. It delves deeply into the choice to have a child with Down syndrome, and explore what it means to have a disability. I have it uploaded for you on iTunes and Blurb, and it’s also available as a pdf. Read more about it and get it here.