Excerpt for Why Not Them?: How One Man’s Love for His Son Born with Down Syndrome Is Changing the World for Persons with Disabilities by , available in its entirety at Smashwords

Why Not Them?

How One Man’s Love for His Son Born with Down Syndrome Is Changing the World for Persons with Disabilities



By Lloyd M. Lewis

As told to Corinne Joy Brown









Copyright 2018 by Lloyd M. Lewis

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form by any means, electronic, mechanical, photocopy, recording or any other–except for brief quotations in critical reviews or articles—without prior written permission of the publisher, except as provided by USA copyright law.



With thanks to Erica Porter, Michelle Sie Whitten, Dominick Rivera and Corinne Brown for most of the images and Stevie Crecilius of Wonderworks Studios for the back cover shot.



Book design by AE Books, Denver, CO.



First Printing by Steuben Press. Longmont, CO. 80501



Smashwords Edition

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Praise for Why Not Them?



Very, very well written, heartfelt, compelling, and moving... quite a piece from the heart!”

—Craig Fleishman, founder of Jason Fleishman Camp for Children with Epilepsy


Thanks for giving me the opportunity to read this important book. To see the work Lewis has done is not only inspiring to read about, but spiritually uplifting to realize its impact on individuals and upon society.”

—Rabbi Raymond Zwerin, Temple Sinai, Denver CO


Lloyd combines years of experience both as a practitioner and as a parent to provide unique perspective and best practices on how we can better serve the families of children with Down syndrome and other intellectual disabilities.”

—Jamie Van Leeuwen, Global Livingston Institute


Sometimes, a story exists that is too good not to share. That’s the case of arc Thrift Stores and its CEO, Lloyd Lewis. In an age of division, Mr. Lewis has elevated not just the financial profit of his company, but the ethical and moral profit as well. His drive to make arc a community, a village of caring people that advance the cause of people with disabilities is inspirational. It shows that profit and compassion CAN go hand in hand. The personal stories of Mr. Lewis with his son Kennedy and the stories of many of the other positively impacted people with disabilities at arc are moving. You will have welled up eyes and a full heart after reading this memoir.”

—Derek Blass





Dedication

To Kennedy, and to Claire, Hannah and Aidan, and all of our wonderful arc Ambassadors...





Contents

Prologue

Chapter One: Meet arc Thrift — A Modern-Day Miracle

Chapter Two: Fulfilling the Dream

Chapter Three: The Back Story

Chapter Four: When the Universe Intercedes

Chapter Five: Understanding the Challenge

Chapter Six: My Son, My Inspiration

Chapter Seven: A Peek into the Future

Chapter Eight: Garnons Muth — Not Just Any Adult with Down Syndrome

Chapter Nine: Fighting the Good Fight

Chapter Ten: Education is the Key

Chapter Eleven: The Man in the Mirror

Chapter Twelve: Working for a Purpose

Chapter Thirteen: Looking Back

Chapter Fourteen: The Courage of One — Lorraine Espinoza

Chapter Fifteen: A Man Named Robbie Hall

Chapter Sixteen: Claire

Chapter Seventeen: Meet the Ambassadors

Chapter Eighteen: Party Like You Mean It

Chapter Nineteen: The Joy of Learning — arc University

Chapter Twenty: Kennedy Now

Chapter Twenty-One: It Takes A Village

Chapter Twenty-Two: Santas, Sweethearts and Star Wars

Chapter Twenty-Three: We’re Not the Only Ones

Chapter Twenty-Four: The Big Question

Chapter Twenty-Five: My Challenge to You

Appendix: Other Colorado Agencies Making a Difference

Happiness Surrounds Us

About the Authors





Prologue


I walked the hallway and paced the floor like any expectant father, looking alternately at my watch and the clock staring back at me on the wall. It was close to seven o’clock. My partner had gone into labor earlier than we expected. Although I had rushed over to join her as fast as I could, I was more than an hour from the hospital, and she was already well under way when I arrived. As I sped toward her, anxious and excited, I kept thinking that no matter who you are, nothing equals the anticipation and concern over the birth of a child — after all, a new human being was coming into the world.

At the time, in the fall of 2003, I was 48 years old and quite far along in raising a family. I had teenagers already, a boy and two girls, and had to brace myself to think that I’d be adding another little one soon. We’d learned earlier from the ultrasound that our baby was a boy, and decided we would call him Kennedy. The name we arrived at happened to be the name of one of my childhood heroes, a man who had made a difference and left an enduring legacy. That much I knew. The obstetrician had also suggested an amniocentesis midway through the pregnancy, but we passed on that idea, thinking it wasn’t important. I’m not really sure what I would have advocated then, though I know now, it would not have made a difference.

When the delivery doctor came through the door into the waiting room, I could tell immediately by his demeanor that something was wrong.

“I’m afraid I don’t have very good news,” the doctor said, his face unusually grave.

“What is it?” I asked, not sure I wanted to know.

“We suspect Down syndrome,” he answered in his most professional tone. “I’m so very sorry. “A proclamation of doom.

“What do you mean you’re sorry?” I asked, more curious than surprised, a ripple of concern furrowing my brow. Unfamiliar with the term, I asked, “Down syndrome?” I’d heard of it, but that was all. “What does it mean?”

“It’s something like Mongolism,” he said. “As in — not normal. If I’m correct, you and your wife have a very rough road ahead.”

I was stunned by his answer and, temporarily, unable to respond. I shook my head, filled with disbelief. No, I thought, he had to be mistaken. He couldn’t be talking about our baby.

Not in my world. No way. I contemplated his remark silently, facing him, and stared into his eyes. What did it really mean?

As I waited for more information, a feeling like an electric shock rippled through me, confirming that my life was going to change. Nothing would ever be the same. At the time, I was working as a CFO for a high-tech company. I never dreamed that our family life could shift in an instant, or that anything irreparable could come my way. I was shaken by the doctor’s negative prognosis and ushered him out of the room, asking adamantly that he not return. His use of the outdated and damning term “Mongolism,” something I had heard of, offended me to the core.

*****

Around us, hospital nurses moved with deliberation, skirting the bed in respectful silence. No one said a word. Gone was the usual atmosphere of joy and triumph after a new baby is born. It felt like we were in a morgue. After some of the nurses and another doctor reviewed the assessment and explained the situation further, we tried to be accepting, still not fully appreciating what the language implied. The term “Down syndrome” sounded so foreign. We needed more.

“Can I see him please?” I asked, determined not to be frightened by what I didn’t understand.

Kennedy had been moved to the infant nursery for further tests and much-needed oxygen. I begged the nurses to let me hold him in my arms and reassure myself that everything was going to be okay. At the same time, I promised our little newborn that, unlike some parents who might have been set back by this kind of news, we would stay the course; we would never abandon him, no matter what, and that, whatever it took, we’d both be there.

What I needed to learn was just what kind of life awaited this innocent child, and then, determine my role, whatever it was going to be. The challenge loomed bigger than anything I had ever faced before. I also needed to reassure his mother and myself that we could handle it, one way or another. Little did I know that an immeasurable opportunity lay before me — an opportunity and a blessing.

With an overwhelming feeling of both humility and gratitude from that moment on, I set out to explore the mystery of how the birth of our son would change the way I lived, the way I saw the world, and what really mattered. Kennedy’s survival, growth, and development allowed me to take his disability, Down syndrome, and appreciate the miracle of his birth. This journey also led me to tackle the complete reorganization and repurposing of a large, nonprofit organization that today exclusively serves many hundreds of others with intellectual and developmental disabilities across greater Colorado.

My ongoing commitment to my child and to all those individuals — including their complete fulfillment as human beings — and to this vast field of study and research has deepened over the years and continues to do so every single day. Kennedy’s arrival has helped open the doors for thousands, bringing them joy and self-respect, and changed the way they live. In fact, the way the rest of us live, too.



More importantly, by acknowledging Kennedy’s disability and accepting it, the world I inhabit can now view the birth of a child with disabilities as an event to be celebrated as much as any other. The traditional feelings of pity and sadness experienced by parents, once so common, must instead be replaced with understanding. Persons with disabilities, I am so very proud to say, have much to give and teach us all.

Best of all, I realize as I write these words, that the story I want to tell isn’t over. In fact, it’s really just begun, especially because I have seen the effect one person can have by leading with compassion. It’s a lesson I’ve learned, and it’s simple. First, you have to fill your heart with love, and then, share it with everyone you know.





Chapter One

Meet arc Thrift — A Modern-Day Miracle


Some people dream of success; others make it happen.”

—Unknown


In a utopian world, no one is ever left behind, each person has the same chances as the next, and we all have the same possibilities for success. That’s the promise — the “American dream.” But as I have learned in my own life, the real world has its own ideas. Things don’t always go as planned. Some of us face greater challenges than others, and some of us need individual help and support. Some of us have to work much harder than the rest, every single day of our lives.

In greater metro Denver, a unique business thrives in response to this imperfect world; a tax-exempt, nonprofit company called arc Thrift Stores that offers secondhand merchandise at enticingly affordable prices. Like millions of other businesses, it’s retail; one small part of a huge sector of America’s GNP; the flow of goods for cash, simple supply and demand, something every businessman understands. At the end of each year, companies big and small that deal in sales look forward to calculating the gross margin or profit. But at the cash registers of arc Thrift, that’s only half the story.

At the end of arc Thrift’s year, our most treasured benefit is calculated in increased human self-worth and self-esteem, a byproduct of providing a livelihood for hundreds of employees who were born with intellectual and developmental disabilities. At arc Thrift Stores, a thriving business has been built on uplifting a unique sector of humanity, and our monetary profits support the advocacy, employment, well-being, and inclusion of valuable men and women who might have never been given a chance to be independent and fulfilled. Our company is dedicated to creating and funding programs that serve those individuals living with intellectual and developmental disabilities, and who have complex and evolving needs. At our core, our company believes that all people in this community should have the opportunity to decide how they live, learn, work, and play.

*****

Creating a new paradigm for employing persons with disabilities doesn’t happen overnight. It takes the work of hundreds of employees and hundreds of volunteers, as well. It takes big thinking, imagination, and an appetite for risk. It takes courage and requires patience, compassion, and the ability to see past the idealized version of what men and woman should look, think, and be like.

Most of all, it takes guts to persevere in the face of disbelievers. For me, it took a vision formed more than a decade ago that continues to refocus with each new dawn. I should know. I’ve been there every step of the way, and I am still dreaming of ever-more perfect versions of this amazing dream. The story I’m about to tell you aims to help you understand how that vision became all I could see on my immediate and far distant horizons, exactly how the vision changed me, and how it might change you, too. It might be a springboard for something extraordinary and far-reaching in your own life, for the greater good, and for your own self-worth. I’m hoping that it will.

Hiring people with disabilities is a plus, not a minus. There’s room for them in every single business. They make the perfect employees.


Hiring people with disabilities is a plus, not a minus. There’s room for them in every single business. They make the perfect employees.





Chapter Two

Fulfilling the Dream


The essence of being human is that one does not seek perfection.”

—George Orwell, novelist


The great state of Colorado prides itself on its diversity. This is a place rich in varied demographics, where people from every background are welcome to settle and make their home, and who do so in continuing droves. By and large, its citizens are open, engaging, and accepting. It’s part of why I love living here.

Until recently, however, one population was largely underserved — individuals with developmental disabilities. Looking as far back as the 1950s, more than 90 percent of such individuals who lived in Colorado, as well as in other states nationwide, had no source of gainful employment. Most of them, following high school, simply remained at home with their families into adulthood.

The situation remained the same here for decades — until the 1960s, when the idea of employing individuals with disabilities was first encouraged. Until our stores and others began to implement this unique work philosophy in earnest, however, many thought it impractical or impossible to employ persons with intellectual or physical disabilities at all, on either a large or small scale. Few precedents existed at the time; there was very little to build on. Many naysayers said it couldn’t be done. But we at arc Thrift Stores are proving them wrong.

All our arc Thrift–funded programs, stores, and educational opportunities were, at their conception, more than just ideas; they became a viable mission and a goal, as well as the heart of a veritable community. The full realization of that goal didn’t happen overnight, and it wasn’t easy; but by following the dream of a better world by promoting inclusion of those with special needs, arc Thrift Stores created a work model that promotes individually tailored employment opportunities for adults with intellectual and physical disabilities all across Colorado’s Front Range. And not just for a few individuals, but for hundreds!

Sounds challenging, doesn’t it?

Well, here’s the good news; the challenge has been met. We did what couldn’t be done. Those once cast aside by so many have unimagined new opportunities.

*****

Long before I came into the picture in 2005, Arc of the United States chapters in Colorado were already established across the state. The idea for arc Thrift Stores, the chain of retail stores in Colorado that offered inclusivity and support, was preceded by the founding of this parent organization, back in the 1940s.

Arc of the United States was one of the first organizations founded by parents of children with intellectual and developmental disabilities. Initially, it was created to petition for humane treatment of those who were housed in large institutions, followed by advocacy for deinstitutionalization, mainstreaming, and inclusion in society—a worthy and important mission. It arose at a time when ideas about how to care for and treat those with disabilities were finally changing; these ideas were long overdue, precipitating a new era of care and medical research. But it was a young organization, just finding its way, and a great deal of science, intervention, advocacy, and a much-needed shift in public perception and understanding were yet to follow.

Today, hundreds of local Arc chapters exist across the United States. They make up one of the country’s ten largest nonprofit organizations. Colorado boasts fourteen of these advocacy chapters located from as far south of Denver as Pueblo, to Fort Collins in the north, and across the Western Slope. These chapters are comprised of families and advocates who work with thousands of individuals with intellectual and development disabilities, helping them to find jobs, housing, medical services, assistance in schools, and varied social activities.

The company I head, “arc Thrift Stores,” is centered in metro Denver, and provides the majority of the funding to the Colorado chapters totaling nearly $70 million collected since 2005. We have made it more than possible for Arc to advocate for those in need. Our basic goal has been to create a profit so we can invest monies back into these chapters, thereby offering various constructive programs supporting those with developmental disabilities.

How we do this is the real challenge. We manage to make this huge financial commitment thanks to our more than 27 arc Thrift retail stores and warehouses. (Soon to be 28.) We also host a program we call “Working for a Purpose,” conducted throughout all the store locations, that helps to provide solid employment opportunities for all kinds of employees, including those who might otherwise find it difficult to obtain jobs.

Sounds amazing, doesn’t it?

It is. It’s a far-reaching, idealistic, and remarkable goal that we reset every single day, destined to be as riveting and exacting in the future as it was when we started. The inspiring program, Working for a Purpose, recruits, hires, trains, and mentors individuals who are born with challenges such as autism, Down syndrome, cerebral palsy, and other intellectual disabilities. It might sound improbable, but it’s true — we hire employees with all of the above and more; individuals whom most people think are simply incapable of holding a job.

As founders of Working for a Purpose, we recognize that absolutely everyone can contribute to the world in some meaningful way. In keeping with that belief, we honor contributions large and small made by every one of the dedicated participants in our employ. Working for a Purpose also provides holistic, strength-based, supportive employment services along with practical, life-skills education and overall socialization opportunities.

Seem complex? It’s not. In short, we engage and care for the whole person and try to make it fun. To that end, each month arc Thrift Stores, the company, offers a relaxing social outing, such as sharing a meal, participating in a physical activity such as bowling or sailing, or attending educational and entertaining events like a film or a trip to the zoo.

Make no mistake — the program Working for a Purpose is not a sheltered workshop. Rather, our enrollees are included in all aspects of legitimate work right alongside their more able-bodied peers! They are paid an hourly wage as well, slightly above minimum wage. This distinction says it all: Mainstreaming workers with disabilities leads to more self-sufficiency, self-confidence, and socialization, not to mention providing for a very stimulating workday for all concerned.

And guess what?

In return, hiring employees with disabilities has resulted in a lower turnover rate, better attendance and, initially, a doubling of company revenue. Yes, doubling. At this juncture, we can even say tripling. It’s a formula for success that works. It’s just good business and it creates a happy work place.

Have I got your attention yet? Good.

But wait — there’s more.


Today, the formerly invisible population of persons with disabilities is becoming more visible, to their benefit and the benefit of society as a whole. It’s time to see them for who they really are.





Chapter Three

The Back Story


The road to glory begins with one step.”

—Unknown


It’s important to understand how my company got where we are today, considering that the newly formed chapters of Arc in Colorado relied solely on grassroots efforts. During the very humble beginnings, they held small fundraisers such as garage sales and bake sales to raise money to support their programs. Then, in 1963, the local chapters banded together and created Metropolitan Arc as a separate fundraising entity and nonprofit organization. They knew they needed to grow if they were going to survive, and their sole purpose was to raise funds for their many needs.

Back then, a board member from the Arc chapter in Front Range Jefferson, Clear Creek, and Gilpin counties near Denver attended a training session in California. While there, he visited and toured a thrift store operation. Intrigued, he brought the idea back to his metropolitan Arc colleagues. Could it be replicated here he wondered, hiring those with disabilities to work in such an environment? In June of 1968, the first arc Thrift Store opened on South Broadway in Denver, the flagship location still operating today. When I came on board much later on, I saw the opportunity to run our stores more successfully with new ideas and a spirit of innovation. I believed we could expand even more rapidly than originally projected. For the last decade, expansion under my lead has been exponential. Highly visible retail thrift stores across Denver are now supported by conveniently located neighborhood drop-off points. The arc Thrift logo with its charming bluebird can be seen throughout the city. In fact, at a time when more and more people are buying online, we have bucked the trend and are proving immediate satisfaction with brick-and-mortar locations filled with product. Buying secondhand no longer has any stigma — after all, everything vintage is in vogue. Buyers flock to the book and music departments as well as housewares and, of course, to seasonal decor and clothing. But we hear it time and time again — the human contact is as valuable as the bargain. People enjoy shopping in our stores.

Yes, I’m proud to say that practically no part of metropolitan Denver and most of Colorado is without arc Thrift Stores’ presence today. Thanks to the continued dedication of our staff, and outstanding results measured in financial growth, human resources, and glowing smiles, we’ve done what no one thought possible — provided jobs for more than 300 individuals with disabilities in our overall workforce of 1,700 employees. Most of these workers are without college degrees (some without high school degrees) or technical training. We also employ numerous non-English speaking employees, and some who come from troubled backgrounds, including substance abuse and criminal histories. Some have been homeless, some are refugees. To us, they’re all equal.

Sound like a miracle? I like to think of it that way, and so do many others.

I can tell you this: It’s not just a dream or a business plan anymore. Our arc Thrift Stores have become a life-altering, game-changing, mind-blowing reality. We’ve learned that hiring people with disabilities is a major plus, not a minus. Each and every team member at every employment level is totally committed to making a difference, helping others, and working with those in need. We succeed because we have to, and because our people truly care about each other. More important, over the years since I’ve been the company’s CEO, I’ve come to believe unequivocally that there must be room for employees with intellectual disabilities in every single business in Colorado, in the United States of America, on the planet, at all times, every day, everywhere. I also believe that, in so many ways, persons with disabilities make the absolute perfect employees.

And I cannot wait to tell you why.

Thanks to the birth of my son Kennedy, I became a passionate advocate for inclusion and acceptance of people with DS and other disabilities. If I can do it, so can the next person.


Thanks to the birth of my son Kennedy, I became a passionate advocate for inclusion and acceptance of people with DS and other disabilities. If I can do it, so can the next person.





Chapter Four

When the Universe Intercedes


I ask not for a lighter burden, but for broader shoulders.”

—Jewish proverb



Following baby Kennedy’s birth and the news that he had Down syndrome, my partner and I were presented with a situation neither of us really understood. The possibility of a child with any kind of intellectual disability had never come up, never even passed through our minds. We listened with intent as a maternity nurse quietly explained that raising our child, one out of 6,000 babies born with Down syndrome (DS) in America every year, would become our greatest challenge.

Just why did our son come into the world this way, we wondered. The truth is, we’ll never know. It’s nothing we did, or could have done. We were reassured that it was unrelated to our age (Kennedy’s mother was in her early thirties), or the lifestyle we led, or any other external or internal factor. But when a birth like this happens, you stand frozen in place, overwhelmed by doubt. You feel isolated and alone. What could you have done differently? More importantly, how can you be the parent you need to be now? What skills will it take?

Kennedy’s birth as a child with DS was indeed not the way things were planned — not quite the way we thought it would be. Although this little boy wasn’t my first child, he was my partner’s firstborn. And in the days that followed, we grew acutely more alone with our thoughts. We both realized we weren’t just new parents; we were now also caretakers, and strangers to the particular requirements of our infant boy. We had work to do to close the gap. As mentioned, we were raising other children at the time, and we had no idea how the situation would impact our larger family.

As our new lives developed, Kennedy’s mom would maintain home care and schedule appointments with therapists and doctors while I sought all the resources and education available on the outside. That’s one of the main things I always did best: solve problems, find solutions, and take charge. As per usual, I was ready to give it my all.

Few can understand how overwhelming life seems when a child is born with a disability. I immersed myself in the search for guidance and information, unsure at the beginning where to turn. After all, I was used to making things right, keeping things under control, knowing it all. I was the one with the answers for everything, and always had been. At this juncture, I wanted solutions and direction in a hurry — I needed help.

*****

I started to investigate and read everything I could find out about Down syndrome. A genetic condition that cannot be “treated,” DS is instead a challenge to be addressed at every phase of life. One in 800 persons is born with the condition; each person is different and unique. Down syndrome, also known as Trisomy 21, is caused by the presence of all (or part of) a third copy of chromosome 21. It’s typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.

The condition was named after John Langdon Down, the British doctor who fully described the syndrome in 1866. The genetic cause of Down syndrome — an extra copy of chromosome 21 — was identified by French researchers in 1959. Newborn children with DS tend to have a smaller head, shorter neck, and characteristic facial features such as slanting eyes and a flatter face. Mental acuity ranges from 50 to 70 IQ in mild disability cases to less than 35 to 50. As infants grow, one can expect developmental delays in hearing and speech, and slow to mature gross motor skills such as crawling and walking. Basic communication skills and fine motor skills are also affected.

*****

The history of DS and many other disabilities is a difficult one. For example, people with disabilities were among the first targets of eugenics, a pseudoscience promoted by prominent universities and foundations in the 1920s in America. Eugenics presumed that society would be improved by reducing or eliminating people with disabilities, and techniques for doing so were numerous, including sterilization of people who had disabilities and even euthanasia! (Sadly, today in Iceland, a similar mindset now encourages abortion of in-utero babies with genetic disorders determined through early testing. Doctors there have proudly announced that the birth rate of such individuals is now down considerably, a highly engineered percentage.)

Overall, approximately five million people in the United States today have intellectual and developmental disabilities, including DS, autism, cerebral palsy, and all forms of cognitive disabilities. That number would be even higher without screening techniques during pregnancy; even here in the United States an estimated 60 to 80 percent termination rate exists when DS and other conditions are identified prenatally.

For centuries this disadvantaged population has been mostly invisible, warehoused in large inhumane institutions or hidden in family homes. But today, the emphasis on inclusion and integration of people with disabilities in communities, schools, families, homes, and the workplace, is thankfully, shaping different circumstances. The result has been a huge improvement in cognitive and daily living skills, to their benefit and their families. Little did I know as I was exploring this history just how I might fit into this picture.

*****

At first, the scientific information left me baffled. The medical, genetic, and historical content was a lot to process. Yet, I couldn’t take in enough. After all, knowledge was the first step in fulfilling my new role as Kennedy’s father and protector. On a brighter note, I was reassured by therapists, pediatricians, and other parents with similar concerns that children with Down syndrome have profound relationships with family and caregivers and deep emotional responses. They relate. They learn. They can live truly happy lives. I was told I shouldn’t worry. Most of all, these children accept and return love.

But of course they do, I said to myself. Love affirms they are wanted. As I’d learned from the numerous trials and joys of raising my other children, love transcends all. I continued to read and seek more facts. Among other things, I discovered that, for centuries, babies born with the condition were doomed from their very first breath. If not weakened by heart damage or other systemic problems, they typically had a short life span of 20 to 25 years or less. Most were relegated to the care of institutions. Secreted away, they were a family’s shame, a silent burden.

Just reading this research was painful.

I was shocked to discover that at the start of World War II in the 1930s, Nazi Germany didn’t only seek to eliminate gypsies and Jews in its conquest for a dominant Aryan nation, but anyone deemed imperfect as well. Without any compassion, those with intellectual or physical disabilities — some 300,000 souls — were the very first to go. The facts sickened me. To think a modern country could think of individuals with disabilities as less than human was incomprehensible. Incensed and infuriated by what I read, I kept digging, searching for anything encouraging, for every positive thing I could hang onto. Reaching out into the community, I discovered Arc. (Arc was formerly known as the “Association for Retarded Citizens,” a term used before the outdated and offensive term “retarded” was officially retired.) The organization advocated for new ways to keep individuals with intellectual disabilities safe and better cared for, preferably at home. What a connection! Finally, others who cared, and at last a place to turn. I knew I needed to learn more about the organization and get personally involved.

*****

After his birth, Kennedy remained in a hospital for the first couple of weeks, followed by oxygen monitoring at home for the next three months. Luckily, further testing, particularly regarding heart function, proved that his heart was normal. This was a small, saving grace as nearly half of all children born with Down syndrome require surgery to repair holes in their heart following birth.

I was filled with relief at this news, and continued to take one precious day at a time, hiding my worry, burying my concern. All I could do was hope for the future. My deepest fears, often unspoken, continued to be muffled in my attempt to be courageous while seeking every way for my child to thrive.

I remember to this day how I felt, late at night, in the still and peaceful safety of Kennedy’s nursery when it was my turn to change his diaper or check his oxygen. I would gaze at him and wonder: Will you grow up and live a healthy life? Will you ever have friends? Go to a regular school? Love a girl? Marry? Or simply, my greatest concern of all, would he ever be able live on his own? As parents, we both wondered what would happen to him after we were gone. Even more important, when he grew up to be a man, would he feel happy to be alive?

I had no answers. All I knew was, from the first time I saw him, I was determined to provide this child every advantage in the world, plus all the love I could possibly give. We dreamed that one day Kennedy would be treated no differently than other children, and that he would be mainstreamed into society as much as possible.

That night, alone with him in the nursery, I picked him up and held him close. With unwavering confidence, I assured him that he would become a fine human being, productive and independent. I kissed him on the cheek and looked into his long-lashed, darkblue eyes. He looked back at me and smiled. At that moment, with an even firmer resolve and a feeling forged from the bottom of my heart, I committed the rest of my life to making sure that he would.


So many experiences. So many challenges, areas and avenues I was unaware of that I’d never thought of before. So many things to learn. Knowledge dispels the darkness.





Chapter Five

Understanding the Challenge


We must be willing to let go of the life we had planned, so as to have the life that is waiting for us.”

—E.M. Forster, novelist


Once Kennedy’s mother and I embraced the reality of our son’s condition, I set out to manage the future with a vengeance, seeking out national organizations and local ones, too. Anywhere I could get information that could give me a further edge. Just when I thought I had run out of places to turn, the universe stepped in to direct me to the perfect guide.



Dr. Linda S. Crnic, a brilliant, young neuroscientist who worked at the University of Colorado Anschutz Medical Campus in Aurora, east of Denver, entered our lives. She welcomed my questions and offered emotional and academic support. Around the same time, I met a fellow parent of a newborn with Down syndrome, Michelle Sie Whitten, now the celebrated founder and executive director of the hugely successful Global Down Syndrome Foundation in Denver, a world leader in research. Michelle, who had recently given birth to a child with DS, was just as hungry for knowledge and assistance as I was. She was determined to provide the best for her newborn as well.



Dr. Crnic was not only a neuroscience specialist, but also a highly respected University of Colorado professor of pediatrics and psychiatry. Gifted and compassionate, she served as the director of what is now known as the school’s Intellectual and Developmental Disability Research Center. In addition, she led the creation of the new Developmental Psychobiology Research Group at the school. In short, she was a powerhouse and a great mind. Yet, busy as she was, Dr. Crnic had time for everyone, even me. Her interest was people; her goal, the healing of body and soul. In no time at all, I became her devoted initiate, determined to learn what she knew.

Deeply concerned about children with disabilities and their families, Dr. Crnic quickly became my daily source of inspiration. She took the time to explain the biological and scientific underpinnings of Kennedy’s condition and what medicine and science had to offer. “Here’s the good news,” she shared with me one day over coffee at the hospital. I remember the conversation so clearly, and I took down copious notes as usual. “Persons with Down syndrome, some 350,000 across America, really aren’t as disenfranchised as they were before,” she said. “We’re seeing real progress everywhere. It appears they’re finally becoming more and more integrated into society and community organizations, so we have to think positively about their life path.”

As she had pointed out earlier, it was already proven that many persons with DS (both adults and children) enjoyed social and recreational activities and, with help, could live truly satisfying lives. Her advice quelled some of my doubts, and gave me reason to feel optimistic about the future.

“On the other hand,” she reminded me, “We have to be realistic, Lloyd. Individuals born with Down syndrome have varying degrees of cognitive delays, from very mild to severe, even into adulthood.”

That seemed important to me then. It widened the range of possibility, of growth and achievement. It also made me worry.

“And some of these with intellectual or physical disabilities,” she continued, “can’t communicate using any recognizable language or alternative communication system. In fact, some cannot be understood at all, except by those who know the person well. It’s a real disadvantage. Speech can be a lifelong struggle,” she added, a grave expression on her face, “And most never find meaningful work.”

She was reluctant to add that a shocking number have even suffered some kind of sexual abuse. “But it’s true. They can be extremely vulnerable. Some don’t even have family or legal guardians, and are incapable of making informed consent decisions for themselves.”

The conversation had grown disconcerting, but I begged her to continue.

“I won’t kid you, Lloyd,” she continued. “Their lives can be difficult, like it or not. So, until things change, be patient. We in the clinical world just have to work with it and do our best to make a difference in their survival.”

Her message was understood. I wrote down the word “patience” and underlined it three times. I wanted to believe everything she said. Intellectually, I knew what she was saying, but my heart refused to accept the conflict, the opposing forces, and the difficulty. Those facts she reiterated didn’t describe our son — our smiling, laughing, pink-cheeked son. That wasn’t his world. At least, not yet. Nor, I hoped, would it ever be. He had us to care for and protect him, for now anyway. He had me as his guardian for as long I lived. Yet I continued to ask, where would my Kennedy fit in? What does the future hold?

It was way too early to tell.

*****

For those who are unaware, the genetic research on Down syndrome is daunting, as are the results. Statistics tell the story with numbers that leave no room for doubt. People with a variety of disabilities face many obstacles and many are unable to advocate on their own behalf, even in the simplest of terms. I learned that an average of 71 percent cannot write more than their name or a few single words. A similar percentage need close supervision due to frequent problems in behavior, mental health, major medical, legal, and/or adaptive skills.


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