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Introduction
A Guide to the Heart
Hear are my thoughts about my mom writing this book…I think mom has done well…
And telling those people out there that you CAN get help…
I didn't want my life in a book at first so I told mom that and we talk it over and after I talked with mom I thought about it. If it helps other kids then we should do it and so I told my mom ok.
—E-mail from Allegra Ford
In 1972, I was living in Manhattan with my six-year-old son Alessandro and my newborn daughter Allegra. We had a very happy life, with no sign of trouble on the horizon. Alessandro was in kindergarten and was doing fine and Allegra was a happy, healthy baby. This continued for four years, but then our lives took a turn that forever altered the course of our future. My daughter began to exhibit what I thought at first was a small behavior problem. This problem soon escalated into something I had never seen or imagined before. When I tried to find help, I was confronted by a medical establishment that offered me conflicting opinions and seemed to know as little about her condition as I did. This uncertainty was the beginning of a terrifying and bewildering ordeal, filled with dire predictions from all sides telling me that my child's education and future prospects and even her happiness were in question.
I had no signposts to follow back then. I had no idea what to do or who to turn to. Worst of all was the crushing sense of isolation, the feeling that I was the only one going through it and that no one—no one—could possibly understand. I even had difficulty talking to my own family about this. My father was extremely busy as the head of the Ford Motor Company and was always traveling. My mother, although she was nearby, had instilled the concepts of discretion and stoicism in us at an early age—problems were something to be handled quietly, preferably without imposing them on anyone else. Nothing in my background or upbringing prepared me to handle this new, unexpected challenge.
What was the cause of all this confusion and pain? It is something that sounds very simple, but it is not. It is complex and devastating, not only for the child but also for the entire family.
It is called a learning disability. Most people equate a learning disability with dyslexia—reversing letters and words—and that is, indeed, a form of LD. But there are varying levels of severity, some mild and some so severe that every aspect of a child's life is affected: reading a book, playing a game, interacting with other children. Such ordinary daily occurrences as these have the potential to become a confusing, often paralyzing, ordeal and can turn what should be a happy childhood into a life of endless frustration and isolation.
LD is a neurological disorder. Information isn't processed as straightforward information but as a chaotic jumble of words, numbers, and thoughts tumbling over each other in the brain. Social cues are often misunderstood and can lead to tension in relationships. Often attention deficit disorder will accompany LD, adding more confusion and disorder to the mix. This is not mental retardation, autism, or Down's syndrome, and often there is no outward sign of the turmoil within.
When Allegra was diagnosed with multiple severe learning disabilities in 1976, there was little or no literature on LD and I was going through this on my own. I needed information to explain my daughter's condition and what I could do to help her, but I also needed a guide to the heart. I needed to connect with someone who had been through it already and could offer words of comfort and the most simple reassuring statement a parent can hear: "Your child will be fine."
I didn't have that, and that is my reason for writing this book, to enlighten parents and give them hope and help guide them on their oftentimes-treacherous journey. Laughing Allegra is the book I could not find when I needed help. It is not an academic work. I have access to many of the leading experts in the field of learning disabilities, but I have chosen to stay close to my own experience and opinions—not because I discount those of the experts but because my intention is to be the friend across the table, the one who listens and shares lessons learned through similar experiences. It is critical for parents to seek out the advice of teachers, pediatricians, and other experts. At the same time, there is great value in simply knowing that someone else understands exactly what you are going through, feels the same emotions, and has suffered the same doubts and fears.
There are four sections to the book. The first and longest is a memoir of my journey from denial to acceptance, which mirrored Allegra's own from a confused, often lonely child into a young woman of remarkable courage and dedication.
After writing the memoir, I realized there was still more to the story, especially for those whose child has been newly diagnosed. For them, I have included a section called "Questions Parents Ask," which addresses many issues common to parents of children with learning disabilities. These issues range from the most basic question of all, "What is a learning disability?," to questions on a parent's legal rights and how best to navigate the system when problems arise in school.
In the third section, "A Mother's Perspective," I offer advice on everyday matters such as homework, driving, relationships, and how to help your child as they begin life as an independent young adult.
The final section is an in-depth resource guide that directs parents to various organizations that will help in their quest to help their child.
Coping with learning disabilities is an ongoing process. It does not come to an end when the child leaves school or joins the workplace or becomes involved in a relationship. Allegra is thirty and still confronts many of the same issues she faced as a child. Our role as parents also does not end, no matter how old our children are. There are new challenges every day. Laughing Allegra is a story of pain and frustration, but far more important, it is also a story of achievement and success. It can be the same for every child, for success comes in many forms.
I am well aware that many parents do not have the same resources that were available to me. These resources have been important, yes; but they are not the full story. Lifestyle, income level, social circles—all the externals that too often separate us—diminish when a mother is sitting alone somewhere, wondering if there is anyone out there who can help her child. With Laughing Allegra, I have tried to reach beyond external differences, deep into the core of what makes every parent of a child with LD the same, no matter who we are or where we live or how many resources are available for our use.
This book is intended to inspire parents, to show them they are not alone and that we all—as parents of children with learning disabilities—share the same language of hope. Chapter 1 Baby Girl Uzielli I was in New York Hospital. The drugs were not working. An epidural was a fairly new procedure back then and may have needed a few refinements. I was injected again and again, but it didn't help. I felt everything and sensed everything around me—doctor, nurses, hospital room, and mostly, intense pain. My husband Gianni Uzielli was there also, pacing in the room or standing beside me, but his mind was elsewhere. If he had a choice he would rather have stayed home. Husbands rarely came into the delivery room in those days, and for Gianni, it was an ordeal. He was unnerved by the experience and left every few minutes for a cigarette. He was joined several times by my obstetrician, and when they returned and stood over me, trying to comfort me, a stale odor of cigarettes cut through the pain. I was grateful for it: the smell gave me something to focus on until 8:15 p.m. when my daughter came into the world.
That was January 3, 1972, one of the two favorite days of my life (the other being a day six years earlier when my son Alessandro was born). I never imagined I could love another person as intensely as I loved Alessandro, and I was amazed by how quickly my heart adjusted to include this new little stranger. It was an instantaneous reaction, from stranger to adored daughter in a fraction of a second. The first time I held her I knew I would never be able to imagine my life without her. She was beautiful, a pale little angel with delicate features. She had no hair at all, which made her look even more angelic. Alessandro, by contrast, had been a hearty baby, red and robust, born with a wonderful Roman nose and a full head of thick black hair.
I had not wanted to wait six years between children, but I lost a baby shortly after Alessandro was born, and it was five years before I was able to have another child. Six years was a long time for my boy to be an only child and the center of his family's love and attention. How would he react to a new person dropped into the middle of this? Would he adjust? Would he share the spotlight?
Gianni brought him into the room to see me. Alessandro was never shy, but on this day he held back a bit before his curiosity got the better of him and he approached the hospital bed.
"This is your new sister," I said, moving away the folds of her blanket to give him a better look. He stared with his big brown eyes and then he smiled, and I knew he was smitten. Allegra took her own unique and equal place beside him and has never left it since.
"What's her name?" he asked.
I looked at Gianni—he looked at me—we had discussed a few names but never made a final choice. Officially, she was "Baby Girl Uzielli."
"We don't know that yet," I told him, but within a day I was able to announce her name to the world: Allegra Charlotte Uzielli. Years later, long after Gianni and I were divorced, Allegra decided to take on my name and became Allegra Charlotte Ford.
I called her Allegra for two reasons. First, because it means happy in Italian. I had been toying with the idea for a while, and it was finalized after a chance meeting with a stranger. We were in the nursery, standing in our bathrobes, hair a mess, happily watching our newborns through a window. She told me all her children had names beginning with the letter A and for some reason I thought: "That's very cool!"
Then I thought, "Well, that settles that." I already had Alessandro, my first A, my "Big A" as I sometimes called him. Now I had my second, my little A.
Happy Allegra, laughing Allegra.
I met my husband at a party given by my mother in New York City. He was a charming rogue, an Italian with a flair for witty banter. We were married soon after and a year later, in 1966, our son was born. My sister Charlotte's daughter Elena was born six months earlier and my friend Melinda's daughter Ashley was born around the same time, so all three of us had the happy experience of being new young mothers together.
My happiness as a mother was offset by growing difficulties in my marriage. Some people are simply not equipped to be parents. That was the case with Gianni. He was a boisterous carefree man, and when children came and the good times were threatened by early nights and crying babies and new responsibilities, our relationship began to founder. We stayed together and dealt with our separate views of our life goals as best we could. I wanted a close family, loving and peaceful. Gianni wanted a family, but for him, life outside our home was a long exciting party, and he could never quite bring himself to leave it.
When Alessandro was in nursery school, we made a move that we hoped would bring our separate views a little closer together, and for a while it did. Gianni accepted a job managing a restaurant on the island of St. Martin in the Caribbean. It was a perfect time and place to live a carefree beach-bum existence, and that's exactly what we did. We lived a fairly basic life, with no phones and very little communication with the outside world. I brought books so I could work with Alessandro to make sure he didn't fall behind, but for the most part, his classroom was the beach, with lots of time for exploring and collecting shells and sitting by my side to talk about the waves. There were tropical storms and sunburns to deal with, but all in all it was an idyllic lazy life.
After several months of this, I began to feel unwell. I thought it might be the water or the food, or even worse, some exotic illness. I didn't want to take any chances, so I took a short trip back home with Alessandro to try to figure out the problem.
Once there I discovered it wasn't the food, it wasn't the water. It wasn't a problem at all. Far from it! I came out of the doctor's office elated by the news that I was pregnant with my second child.
We decided to return to New York City as a family then, and we moved into a new apartment a few weeks before she was born. We took her home on that cold day, all wrapped up in a pink blanket. I still remember thinking how tiny she was. I could barely see her face inside all those pink folds. She was a smaller baby than Alessandro. Her birth weight was 6 pounds, 6 ounces compared to his 7 pounds, 6 ounces.
When Alessandro was born, I had the usual apprehensions of a new mother. I questioned my abilities and wondered if I would know what to do if he cried or was sick, but that is common among first-time mothers. I was not a major worrier with Alessandro, and had no reason to become one with Allegra. But soon after she was born, I did something I had never done with my son. Late one night, very late, at maybe two or three o'clock in the morning, I woke up from a deep sleep. The only sound from the monitor on my bedside table was Allegra's steady breathing, telling me she was asleep. I lay in bed for a moment, listening for—I still don't know what. For reasons I did not understand, I suddenly felt the need to be beside her. I reached into a drawer and pulled out a flashlight.
Down the dark corridor I went on tiptoe, careful not to make a sound. I reached the door to Allegra's room and touched the handle. I stopped for a moment, surprised to find that my heart was racing and I could barely breathe. I opened the door and aimed the flashlight into her crib and there she was, sleeping peacefully. Nothing wrong. Nothing out of place.
My heart calmed down at once. I stood there for a long time, watching her sleep and wondering what on earth had compelled me to check up on her like that. And why was I so alarmed? My pulse had been racing as if I was having a minor anxiety attack. But why? She had not been crying, she had not made a sound.
I dismissed it with a laugh—one of those mood swings after giving birth, I guess, and I leaned over and kissed her lightly on her silky head, then went back to my room.
The next night I did it again. Awakened in the early hours, the flashlight, the fluttering heart, the walk down the hall to check up on her…night after night I did that, all the time wondering why. I never did this with Alessandro. So what was it about my daughter? Was there a fragility there, sensed at a level deeper than the five senses? Did some form of mother's instinct, primal and subconscious, know there was something more than the usual childhood complaints in her future and that the nagging anxiety that began to grow within me would someday be justified?
There was also the baby I had lost. Perhaps that loss affected me more deeply than I realized. I had been four and a half months pregnant when I began to hemorrhage. Gianni took me to the hospital and left me there, assuring me that everything would be fine. I don't remember why he couldn't stay or where he went that night, but it doesn't really matter. By then, the responsibilities of fatherhood were beginning to close in around him and constrict his lifestyle. As far as our marriage was concerned, he was already halfway out the door. I was on my own when the doctor came into my room and told me they couldn't save the baby.
I wondered if my nighttime vigils with Allegra were proof of the lingering effects of that experience.
I did not know the answers. I did not even fully realize there were questions. All I knew was that I was compelled to leave my bedroom night after night and go to hers. Once there I knew—and I knew it to my core—that the baby I saw sleeping in the glow of my flashlight was perfect: a perfect baby, soon to be a perfect young girl, and one day, a perfectly lovely woman.
We project so much future happiness on such small helpless children. I used to sit in a chair beside her crib with the flashlight off, and my mind would wander far ahead. I imagined her as a toddler, and wondered what color her hair would be and if it would be straight and dark like Alessandro's or maybe wavy like mine was when I was a child? I saw her as a schoolgirl in one of the nearby schools, dressed in a cute little uniform and giggling over boys with her friends. And later, in college, I saw her poised to enter the world as a professional of some sort, confident and enthusiastic about her future. Oh, those were wonderful dreams, and there was no excuse for even a single one of them not to come true.
When she was less than a month old, the weather took a turn for the worse. We had one of those cold spells that hits New York City every once in a while, when the air is so cold it actually hurts to breathe it in. I had an errand to run, so I left Allegra with a babysitter. When I returned home, shivering in spite of my heavy coat and gloves, I ran into the babysitter, also on her way back to the apartment. She had the baby carriage. She had been in the park, taking Allegra out for a stroll.
I was a bit shocked, but I didn't dare criticize her. She was a very experienced woman, and I realized that she must have known it was all right. Allegra was bundled up and looked warm enough, but still, the cold was so bitter I worried that any exposure at all might be too much.
A day or so later, Allegra developed a deep bronchial cough and had some difficulty breathing. I called the pediatrician, but she assured me it was nothing. Once again, I thought, "What do I know?" and followed her recommendation without question.
I spent the night with a humidifier, aiming the steam into Allegra's blanket-covered bassinet. Her cough deepened. By the time the sun came up the next morning, I decided there was a small chance that I might know more than the babysitter and the pediatrician (at least in this instance). That soft inner voice that compelled me to check up on her night after night for reasons I did not understand now proved to be very useful. Against all expert advice, it told me to take her to the emergency room at New York Hospital, and I am very thankful that I did.
She had pneumonia. She spent two days in the hospital. I sat beside her the entire time without sleeping. We were in a dark room. In the middle of the room was an adult-sized hospital bed, and in the very center of the bed, inside a tent, was tiny, tiny Allegra. I've never seen a baby look so small before, so helpless.
Hours passed slowly. I couldn't sleep. I couldn't eat. I didn't dare leave her side.
Once in a while I was allowed to put my hand inside the tent. Allegra grasped my pinkie and held it tight, and there we sat until I was told to take my hand away. I was tense the entire time. I listened to her breathing. I focused on the sound, alert to even the smallest change, and I told the nurses immediately if I thought something was wrong. They were understanding at times, annoyed at others, but I was no longer paying attention to them. I honestly believed she was in danger of dying and I was focused entirely on her.
After she came home, the flashlight vigils intensified. I woke up every night at some point, imagining I heard her cough or wondering if she was breathing freely, and every night I crept into her room to watch her sleep in her crib. My anxiety grew in other ways, too. I didn't trust anyone with her. Babysitters came and went. My standards were high, as most parents' are, but mine may have been ridiculously high. I counted once and was amazed to discover that I had gone through seventeen babysitters in Allegra's early years.
Some left on their own, others left at my request. Most were very nice and none would have harmed her, but I could not overcome my fears. And what were those fears? I still don't know. Vague apprehension, something not quite right…something I couldn't define even if I had tried.
Many times I left my apartment and got halfway down the block only to stop in my tracks, dead still. A companion might stop with me and ask what was wrong.
"I have to go back."
"Did you forget something?"
"No, but I have to go back. I can't leave Allegra alone." I would return to the apartment as quickly as I could. This happened over and over, and did not end until—seventeen babysitters later—I finally found someone I trusted. She was my cousin, Sheila Murphy, the daughter of my mother's youngest sister. With Sheila I could relax. I could leave the children with her, confident they would be all right. But even then there were times when I had to go back—just once more—to check on things.
Not all my days and nights were filled with anxiety and fear in those early days. I was surrounded by friends and family and constant expressions of joy over our new arrival.
Six weeks after she was born, she was christened in our home. My best friend Melinda was her godmother, and she had two godfathers, my brother Edsel and Gianni's brother Philip.
The choice of godparents was an obvious one. Melinda had been a wonderful and important part of my life for many years. We met on my first day of high school. I had been enrolled in the Sacred Heart Convent in Noroton, Connecticut. It was my mother's alma mater and she decided both her girls could benefit from the character-building discipline and rigor imposed by the nuns. Charlotte went before me and spent the summer telling me so many horror stories about convent life that I was ready to go home by the time my parents drove me up the long driveway on that first day. We got out of the car and everyone stood around waiting for the arrival of the imposing nun who was the headmistress of the school. The adults chatted amongst themselves while their downcast daughters eyed each other, fearful of bursting into tears. For most of us, it was our first time away from home, and we felt like we were being sentenced to prison.
One girl caught my attention. She was about my age and was the most beautiful girl I had ever seen, with long dark hair and a huge flower in her lapel. I was a little shy, but she smiled and I found the courage to introduce myself.
"Hello," I said. "My name is Anne."
"I'm Melinda Fuller."
Those were the first words exchanged between two girls who became best friends and have remained so ever since. We started out as school friends, but by the time Allegra was christened, our friendship had developed into something more, something extraordinary. We thought alike, we talked alike, our experiences mirrored each other's in uncanny ways. When I looked at Melinda, I saw an extension of my inner soul.
Edsel and Philip were also perfect choices to share the role of Allegra's godfather. My brother Edsel didn't live in New York, but he did manage to spend many weekends with Gianni and me in the summer. On alternate weekends, Philip joined us. They were wild boys, always with a new girlfriend, but they were loving uncles to Alessandro and I knew they would be the same with Allegra. I could not imagine better godparents.
When Allegra was eighteen months old, Gianni and I decided to end our marriage. It had been coming for a while and we both knew it was the right thing to do. Allegra was so young that I wasn't concerned with her reaction, but I wondered how Alessandro would take it. I had no idea how to break the news to him.
We took him to lunch at the Rockefeller Center skating rink. I was in agony, terrified of his reaction, and was a nervous wreck by the time we sat down at the table.
"Alessandro…," I began, and he looked up at me with his big brown eyes.
"Yes, Mommy?"
I paused, glanced at Gianni and said, "Your father has something to tell you."
Gianni was as flustered as I was, so I made a second attempt. "We've decided to buy you a bunk bed."
"Why?"
"So you'll have a place to sleep—you and a friend—when you sleep over at Papa's new apartment—because Papa's getting a new apartment…."
I was still groping for words when Alessandro suddenly shrugged his shoulders and said, "Oh, I know you guys are getting a divorce. That's okay. Can we go watch the skaters now?"
They always know so much more than we think they do.
So we were on our own then, Alessandro at seven years old and Allegra approaching two. Gianni and I were no longer arguing about our separate views of life, so in some respects the end of our marriage finally allowed me to reach the place I desired: a peaceful, close, quiet family existence. It remained that way for a little while, with no dark clouds on the horizon and no overt signs to indicate what was in store for us.
There were a few hints, but to me they were simply manifestations of Allegra's unique personality and did not give me cause for concern. Now, with years behind me and far more awareness about learning disabilities, I realize that those hints may have been early warning signs.
The first one I remember came when Allegra was two years old, and my sister Charlotte and her husband Tony invited us over for a family dinner. By this time, Allegra had already answered some of my earliest questions about her future: her hair was not straight and dark like Alessandro's, but was red and curly, and her personality was shaping up to being that of an extrovert, wildly happy and vivacious and filled with laughter.
The dinner was a very casual affair—jeans and T-shirts, hamburgers and hot-dogs—an ordinary, unmemorable event until Tony pointed out that Allegra wasn't feeding herself.
"What do you mean?" I asked.
"Well, look at her. She's old enough to use a fork."
She was, but she was still eating with her fingers. She was sitting in a high chair at the table. "So?" I asked, surprised by his observation. It didn't seem that big a deal.
"So nothing," he said. He then smiled at her and said, very casually, "I just don't understand why she isn't able to feed herself at this age. There must be something wrong with her."
It was a simple statement, with no harm intended, but I was shocked. Something wrong with her? I don't remember how I reacted, although I'm quite sure I said nothing. I may even have consciously tried to hide my reaction. I don't remember what I said or did, but I do remember this: by the time the next family dinner came around, I made sure Allegra could feed herself.
I was determined that no one would ever again say there was something wrong with the way my children ate. "Here you go, Allegra," I said over and over again. "Hold the fork like this. No, no, honey. Like this." We practiced it until she got it down, and once she got it down, that was that. She used a fork from then on.
She learned without complaint. In my memories, she did everything easily and on time. But note those words: in my memories. Rummaging through old photo albums and looking at school records, I am astounded to read this in one of Allegra's earliest neurological reports from 1977: "Her developmental landmarks are recalled as being consistently slow. She was late to turn over and to sit. She did not walk until age two and she did not speak in sentences until age four."
There it is in black and white. "Recalled as consistently slow." Since it says "recalled," I must have been the one who was doing the recalling. But why do I remember it so differently now? In my memories, she walked on time, she talked on time, she learned to tie her shoelaces on time.
The comment at the dinner table was a minor incident, but it does hold a place of importance for I am certain it was the day on which Charlotte first suspected something was not quite right. She knew long before I did. I still didn't have a clue. The comment hurt me in the way any mother is hurt when something negative is said about her child. It was far more a matter of mother's pride than of worry or alarm.
Charlotte did not say anything to me at the time. What could she say? There was no outward sign of a disability, nothing to indicate how serious the problems were. Later, when the disability began to surface more clearly, she remembered that evening as the time she first suspected that her husband was right and that there was, indeed, something wrong with her niece.
We sat down together recently and I asked her things I had never asked before. We were at lunch and I tried to make my questions sound as casual as I could, knowing it was important for me to hear the truth unaffected by a sister's concern.
"Do you remember when you first thought something might be wrong?" I asked.
"I remember thinking it," Charlotte said, "but you never mentioned that there were any problems until much later. I thought you were avoiding it, and it's such a delicate thing to say to somebody when they haven't mentioned it first."
"That's understandable," I said. "I'd be the same way. Do you remember any specific incidents?"
"I remember when she was three or four, she didn't seem to be doing what Alessandro did at that age, or my daughter Elena did. Little things, like the alphabet or numbers. Kids test each other. They ask each other things like, ‘Do you know what two and two equals?' I remember she never played those games. And if someone asked her, she didn't seem to have the answers."
Another hint came the following January, when she turned three. By this time, Allegra had fully evolved into the child I think of whenever anyone asks what she was like back then—curly red hair, freckles, an unstoppable vitality and joy for life. She was so much fun!
That year I invited some of my friends' children to our house to celebrate her third birthday. I hired a puppeteer to provide the entertainment. The puppeteer set up a small theater in the living room and the children sat on the floor to watch the show. Allegra was always so energetic and gregarious at home and with her family, and I remember being surprised to see her leave the group of children and sit off to the side by herself. She didn't interact as I thought she would. She even appeared to be a bit withdrawn, which was very unusual. I was about to go sit beside her and bring her closer to the group when she suddenly stood and went right up to the stage.
She reached out for the puppets, but I stopped her and brought her back to her place. "You have to watch them from out here," I said. She sat for a few seconds and then was up again. She stared at the puppets and then up at the strings and the puppeteer behind the theater—I sensed that she couldn't connect the two: puppet and string. She couldn't see that one controlled the other or that the puppets were not real. She believed they were real people, tiny people. Several times I brought her back to her place and each time she stayed for a moment but then she was up again, staring at the stage, fascinated by the strange little creatures and oblivious to the other children around her. I didn't think her behavior was alarming or even particularly odd, but I was bothered by it. I'm certain all the other children's imaginations translated the puppets into real people, but Allegra was the only one who felt compelled to investigate. She was only three, but so were most of the others, and I couldn't understand why she was so restless when they sat quietly, mesmerized by what they were watching. There was a strange contradiction in her behavior: she was withdrawn from the group, yet she was also outgoing, almost as though she was in her own little world where she was happily alone, with no other children in there with her.
"Well, that's fine," I thought. "She is easily distracted." That's all it was, that's what I believed. I wasn't even all that surprised by it for I had already seen how difficult it sometimes was for her to concentrate.
At bedtime, I used to get into bed with her to read a story. I loved the closeness and the warmth, but Allegra could not sit still. She fidgeted and fussed and got up and down and crawled out of bed and back into it, and I soon realized that bedtime stories were not going to be a part of our nightly routine. I was saddened as I looked back at those times with Alessandro as being some of our closest. I wanted the same for Allegra. I was about to give up when I hit upon an idea that I hoped might work.
I got into bed with her one night and pulled the covers over us. This time, instead of opening a book, I lay my head against hers and said, "Once upon a time there was a little girl named Allegra…."
She stopped fidgeting.
"And Allegra had a brother named Alessandro who was older than she was. And one night they were at the dinner table and Allegra dropped her fork on the floor…."
That very thing had happened that night. It was a story she already knew, but it held her interest. "And then what happened to the little girl named Allegra?" she asked, and I told her how Alessandro picked up the fork but wouldn't give it back to her, and how she started crying until the character named "Mommy" told Alessandro to give it back to his sister.
She never got out of bed during those stories. They were about her and about what had happened that day. She knew all the characters and easily followed the events.
Night after night I told a story about the little girl named Allegra and what had happened to her that day, and night after night Allegra cuddled beside me and was eventually lulled to sleep by the sound of my voice. Later we added Goodnight Moon to our nightly bedtime stories. The repetition and simplicity of Margaret Wise Brown's story was enormously appealing to Allegra, and I could count on her settling in without distraction when I opened the book and read, "In the great green room there was a telephone and a red balloon.…"
I did not realize that my storytelling adventures were another example of one of the most powerful tools there is when trying to help a child, and that is good old-fashioned mother's intuition. When I closed the story books and told Allegra about her own day or returned over and over again to Goodnight Moon, I did not realize I was helping her compensate for an inability to focus or understand simple words and concepts. All I knew was that we were connecting as mother and daughter and that she was interested in the story and was comforted by the simple repetition of what had happened to her that day. We also devised a routine around the ending of Goodnight Moon that was a comfort to us both. I came to the last page and together we said, "Goodnight stars. Goodnight air. Goodnight noises everywhere."
I closed the book then, and we both said goodnight to the objects in her room. "Goodnight table," I said, and Allegra repeated it after me.
"Goodnight table," she said in her small, sleepy voice.
I got out of her bed. "Goodnight chair."
"Goodnight chair," she repeated.
"Goodnight teddy bear." I said, and I kissed her and crossed to her door.
"Goodnight teddy bear."
And I turned off the light. "Goodnight Allegra."
"Goodnight Mommy."
Excerpted from LAUGHING ALLEGRA: The Inspiring Story of a Mother's Struggle and Triumph Raising a Daughter with Learning Disabilities, by Anne Ford with John-Richard Thompson. © Copyright © 2003 by Anne Ford. Reprinted by permission of Newmarket Press, 18 East 48 Street, New York, NY 10017, (212) 832-3575, www.newmarketpress.com. All rights reserved.
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