Becoming Mrs. Rogers: Learning to Live the Fragile X Way

By Cindi Rogers

Becoming Mrs. Rogers is the true and heart-felt story of one couple's journey into acceptance following a devastating genetic diagnosis for both of their sons. Their story, its highs and lows entwined with its wisdom and compassion, has become a beacon of hope for thousands of families struggling with fragile X and other autism spectrum disorders. Fragile X is a common and inherited cause of learning difficulties, affecting a child's entire world, including social and behavioral problems as well as cognition and speech. Cindi Rogers not only tells her story, but also gives advice for new parents, sharing fact, such as:

* the impact of Fragile X on the family
* therapeutic methods for a Fragile X child
* specific methods used in teaching individuals with Fragile X
* the behavioral and physical characteristics of Fragile X

Rogers and her husband, Chris, share the perspectives and tools they embraced in order to help their boys be as happy and independent as they can possibly be. It is a story of challenges, tears, joy and hope.

• Language: English
• Publisher: Cindi Rogers
• Release date: Sep 15, 2014
• ISBN: 9781311202451

Cindi Rogers

Cindi is the mother of two sons, ages 23 and 25, who are affected with fragile X syndrome and autism. Since receiving this diagnosis, Cindi has become a leader and symbol of hope within the fragile X community. Her positivity, creativity, and defining can-do attitude has inspired families and professionals worldwide. Cindi and her family have traveled to conferences in multiple countries to present her innovative strategies, helping other families to not only live with fragile X, but also thrive. It has become her personal mission to share techniques to help these families generate ideas that they can implement in their own world, while helping their children with fragile X syndrome to experience happier, more independent lives.Today, Cindi serves on the Board of Directors for Developmental FX in Denver, a non-profit that helps families just like hers thrive in the face of fragile X syndrome. She lives and works with her husband and two sons in Littleton, Colorado, and together they love traveling throughout the U.S. in their RV named Rocket.

Book preview

Foreword

Dear parent/family member reader:

With a diagnosis of fragile X syndrome more than twenty-two years ago, we joined the greatest club that no one ever chooses to join, but in the end are glad to be a member of. Whether you are just beginning your own journey, or you have been at it a while, I wrote this book for you. Writing this book was a labor of love for me. I didn’t decide to write it because a) I’m a good writer; or b) because our life is remarkable; or c) because we longed to share very intimate and personal details about our lives. No, I did it because families have inspired me to tell our story in an effort to try to provide the one thing that has kept us going ... HOPE. Without any hope at all, we would have certainly given up on any kind of moving forward long ago.

We traveled through our grief at an individual pace and many years later, came out at acceptance. Our boys are living a life with parents who accept them just like they are 100 percent. We started out on this journey with little or no hope, and little or no information. It was a really bumpy road, with twists and turns and detours, but it has evolved to be so much better than we could have imagined had we plotted the course ourselves. We know now that we are not alone on this journey.

As I wrote this book, I gleaned inspiration by thinking of many individual families I have met over the years, and pretended to write just to you. That, in itself, was motivating. I am not an expert in fragile X syndrome. I am not a doctor or therapist or even a teacher ...I am just a mom. I am a mom who cares for my sons more than I sometimes care for myself; but this is what has driven me. I did not need to be an expert to learn and teach. I only needed to have hope and caring. That’s it. Whether you can relate to some of the details inside this book or not, it is our story. It does not mean this is the path you must follow. In fact, I hope you follow your own path! As you may already know, fragile X is a spectrum disorder, affecting each person differently. Therefore, outcomes are completely different. Our story is unique, and so is yours.

The opportunities going forward for children with fragile X syndrome will be remarkable. I know you will all grab tight and hold on for dear life in an effort to provide a wonderful quality of life for your own children. Whether you are just starting the journey into fragile X, or you are an old-timer like me, I want you to have hope and carry it with you the entire way. That is my wish for you.

To the reader who has never heard of fragile X syndrome:

I hope you enjoy reading this very personal story of our family’s life after a diagnosis of a complex genetic developmental disability called fragile X syndrome. I do hope you have come to this book with an open mind and you will accept the challenges we have faced with the same.

No life is easy, and each one is fraught with challenges and disappointments. Our life is no different. Some of our experiences may be scary and very different than those you have encountered in your life, but the human spirit has endured and flourished.

If, after you read this, you still want more information about fragile X syndrome, please feel free to visit the resource section at the end of the book for a full list of options. Thank you for taking the time to learn about my life and that of many, many other families all over the world.

Sincerely,

Mrs. Cindi Rogers

Part One

Fighting Biology

Perspective is a masterful teacher. It can give you quick, concise lessons or long-term life lessons.

When I was about five years old, I got one of the quick, concise lessons when I decided to see how many times I could wrap a rubber band around my finger before it would turn blue. I don’t remember the answer, but as I watched my finger turn from light blue to dark blue, causing me to panic and then run for help ... my perspective was clear. I didn’t need to try that again to gain a different one.

A welcome life-long perspective was one on love, when I met my future husband in Mrs. Johnson’s French class in the seventh grade. Our eight-year courtship produced a marriage that has now lasted almost twenty-nine years. I would not change anything about my perspective on love and commitment.

I believe that sometimes fate plays a part in how we gain a new perspective, meaning we often do not get to choose which perspective we get. With the rubber band, and the marriage, I did get to choose. But with my most challenging perspective, I did not.

The most difficult, head-banging, tear-producing, and simultaneously joy-emitting challenge was when Chris and I were blessed with two sons, both affected by a genetic intellectual disability called fragile X syndrome. As a genetic disorder, fragile X affected our sons at the most basic level. They were different and always would be, and, try as we might, there was no way to fix them. Like many parents in our position, that didn’t stop us from trying.

These early years were when we learned that fighting biology was a war we could not win. We had to choose which direction we wanted to go. Would we be able to even survive such a challenge, or would we be forced to give up? Would we be able to gain a new perspective when fate thrust us into this without our consent or buy-in? Suffice it to say, I am often reminded that it is how you choose to react to what you are given that defines who you are.

Chapter One

I’ll never forget the morning of February 25, 1989. It was a typical, calm, before-the-storm kind of morning in Colorado. Cold, but the sun was shining brightly with just a small breeze from the east. I was very obviously eight-and-a-half months pregnant, and moving around was a bit of a challenge. Chris was busy standing inside the engine compartment of his 1968 Chevy pickup. His entire body could fit inside the front end of that truck. We had driven the route to and from the hospital just for practice, and to clock the eleven-mile trip. I was feeling frumpy, so I wore my old sweat pants and a long T-shirt to match my mood. I kept having the urge to pee, even though I had just gone, though this wasn’t unusual for a woman as pregnant as I was. It was at this moment, watching Chris tinker with the truck, that it seemed as though my entire bladder suddenly and involuntarily decided to empty itself. Though a little uncertain, Chris and I decided that a change of clothes and a call to our doctor was in order.

I phoned the doctor’s answering service since it was a Saturday, and he called back shortly thereafter. He concurred what we had suspected: my water had broken, or at least was leaking. We already had a pre-packed bag, so we loaded everything into my car and headed to the hospital.

While we were on our way there, the contractions started to come little by little. The staff checked me into one of the maternity birthing rooms, which surrounded me in a mass of floral wallpaper. They hooked me up to the baby monitor and an IV, and by now my contractions were about seven minutes apart. The doctor had been called, but an hour later he had not been in to check on me yet. Pitocin, a labor-inducing drug administered to get the process moving along, made the pain much more intense than I had imagined it would be. I tried to remember the Lamaze breathing methods we had practiced. It was then I realized Lamaze class did not provide any simulation for the actual pain I was experiencing at that moment. I reminded myself that thousands of women endure natural childbirth every single day, so surely I could do this. Nevertheless, I felt very fortunate that Chris was right beside me every step of the way.

After several hours of up and down, the doctor finally showed up. I was already getting tired. We already had a few signs that the baby might be in stress by way of the monitor. The doctor assessed the situation and announced that either my baby was deformed, or it was a frank breech. The comment knocked every bit of wind right out of my lungs! What kind of thing was that to say to a woman in labor and under stress? The idea that our precious baby could be deformed? A frank breech baby meant the baby’s bottom was at the birth opening and his head was by his feet. We had no choice at that moment. The baby would never come naturally in this position, and the chances of turning him were minute. Our only option at that point was to have the baby via Cesarean section.

The doctor and his team kicked into action immediately, and within minutes, the anesthesiologist had me shot-up via spinal block, the nurses had me loaded on the gurney, and off I went. I had barely had a chance to even look at Chris, although earlier when he held my hand I saw fear in his face. He knew I was scared too. Chris gowned up and accompanied me into the operating room. He wanted very much to see the whole process but I, on the other hand, opted to have a tent placed near my ribs. I wasn’t sure I could handle seeing someone work on my own body. Would it hurt? I had no idea. We hadn’t practiced this part, and it was all happening so fast. Within fifteen minutes from start to finish, our baby boy was born, weighing 6 pounds, 10 1/2 ounces, and measuring 19 inches long. Although his coloring was a little bit blue at first and he needed a bit of oxygen, he was otherwise perfect. He had all ten fingers and all ten toes. I was just so glad it was over and we were all fine.

Chris had a grin that could have split the world in half. He had secretly wanted a boy ...I knew this. A friend of mine from work had a girl when she had her first child, and her own husband’s reaction was needless to say, less than what she had expected. I warned Chris that I would be on the lookout for any such signs of disappointment and he reassured me there would be none. We had previously decided on naming a son Jacob, but hadn’t settled on a middle name. Since the pain medicine left me in something of a fugue, Chris chose Thomas. I had wanted to call him Jacob Lee, but since Chris trumped me, Jacob Thomas Rogers it was.

Having a Cesarean section required five days’ observation in the hospital, which was actually nice. It gave me time to adjust to caring for an infant, and it gave Chris time to tidy up the house, which he did, since we had left in a rush. Everything was ready for us when we returned home. Chris had even put fresh flowers on the table to welcome us. Baby Jacob had a new home and a warm, comfortable place to live. We were such proud parents. We could have never imagined we would love him so much. How can you really know how you will feel about a new child until you have held it in your arms for the first time? My love was overwhelming. I could imagine that I would love him, but to see him and smell him and kiss him; that I could not have imagined. He was perfect. He had a perfectly round and very bald head, the softest skin I had ever felt, and bright eyes.

Our dog Bud, a boxer, had always been our first baby and was very well-behaved. That is, unless you count the first night we had Jacob at home. I had placed Jacob on the changing table which was against the bedroom wall, but as with all things placed against a wall, the baseboard prevented it from standing completely flush and created about a 1/4-inch gap. When I turned around to reach for something, Bud gently reared up on his hind legs and placed his front paws on the edge of the changing table. This created a slight jerking movement as the table nudged, causing Jacob to let out an immediate wail! Bud completed his quick sniff of the creature and then jolted down to retreat to his specified spot. After that, we had an unspoken understanding that Jacob had first position on the totem pole. We were all adjusting.

I had eight weeks of maternity leave from my job, so I spent most of it holding Jacob and taking care of him. Some days it seemed I was lucky to get a shower, because I didn’t want to put him down. I kept the baby book next to the couch where I fed him, just in case I needed to fill in a notable moment. Those first eight weeks also were spent looking for a good day care provider. It was so difficult for me to think about someone else taking care of my precious boy. I realized they would spend almost as much time with him awake as I would, so this made it even harder. My job meant a lot to me, though, so I knew I had to find someone. There were moments when little streaks of doubt would enter my mind. Would Jacob be safe? Would he be fed and well-cared for? How would I know? He couldn’t talk. I pushed those thoughts to the back of my mind. Chris and I finally settled on a middle-aged lady named Nellie, who lived only a few blocks from our house. She had two school-aged boys of her own, and also watched two other brothers, so it was a house full of boys. She had quite a few years of experience, and that provided some comfort as well. The first day I had to drop Jacob off, or Jake as we started calling him, Chris came along. I cried ... he cried ... but Jake was perfectly fine. Nellie was a pro and coaxed us away in peace.

Chapter Two

Returning to work was expected, and I liked it. Juggling the responsibilities of home and work became more of a challenge, but Chris and I rose to it. He was so good at pitching in and helping out in any area. His mom had taught him how to cook, how to do his own laundry, how to clean, and how to not complain about it, making it much easier for me. Chris was also a fabulous father. I could see the love in his face as he held and kissed Jake. We were both exhausted most of the time, but I believe we were too focused to notice. Sex was out of the question due to sheer exhaustion and our reprioritizing of sleep. We were learning that raising a baby was a lot of work! We had a silent agreement that we would take turns getting up at night when necessary: first me, then him. This made for very long nights. We often bickered over whose turn it was to get up, but we were both awake anyway. Eventually we figured out if we took turns sleeping in on weekends, it might make for a better, happier couple during the week. So, Chris slept in on Saturdays (this meant until 8:00 a.m.), and I did the same on Sundays. In reality, we both hated to miss a moment with Jake, so often we were both up anyway.

From almost the time he was born, Jake loved movement, whether it was the baby swing, or being bounced, or Chris raising him up in the air and taking him back down again. He would spend hours in his Johnny-Jump-Up just dancing away as it hung from a doorway. He loved the baby swing and often fell asleep in it. That is, until a meal was served. My grandmother used to say that children always hear the silverware. Jake was no exception. As soon as we would sit down to a meal, thinking he was content sleeping in the swing, he would wake up. We spent every waking moment entertaining him, but this was our choice. He was an incredibly easy baby. He ate on schedule, he cried very little, and he was the most adorable child I had ever met. The fact that I had been around very few children was not the point! We spent hours just watching him and laughing at his every move. When it seemed he wanted so badly to crawl, he would end up scooting across the floor. He especially loved the linoleum in the kitchen for this activity.

We diligently adhered to all the immunizations and appointments to the pediatrician for health updates and progress checks called well-baby checkups. Jake was growing at a normal pace, but at roughly six months of age, we noticed something weird going on with his left eye. When he was tired, we would often notice a funny kind of twitching that seemed to come and go. We asked our pediatrician about it and he referred us to a pediatric ophthalmologist.

At the first visit, the ophthalmologist explained Jake might have a lazy eye. The treatment involved putting a patch over the good eye in an effort to make the lazy eye work harder. Of course, at six months of age, Jake did not like this process one bit. The stickiness of the patch must have driven him crazy because he was constantly whining and pulling at it. It was hard for us, but we did our best to keep the patch on and returned to the doctor after three months. During this visit, the doctor made a different diagnosis to something called strabismus, and he decided Jake would need glasses as the next course of treatment. Silently, I wondered how he came to that conclusion for a nine-month-old who could not even communicate about whether he could see the eye chart or not. But we proceeded with trust. At the same time, I could not imagine how we would keep those glasses on him! They fitted him with little round flexible glasses that fit around the ear. He looked absolutely adorable ... when he kept them on.

The doctor assured us this course of action would alleviate the need for surgery and reduce the risk of blindness later on, which was a noted risk with strabismus. Although Jacob was utterly adorable with them on, it prompted a slight feeling of sadness within me. It meant that he was no longer perfect if he needed this aid to help him see. I