| The following excerpt is from the first chapter of Anne Ford’s book, Laughing Allegra: The Inspiring Story of a Mother's Struggle and Triumph Raising a Daughter with Learning Disabilities. |
Chapter 1: Baby Girl Uzielli
When [my son] 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?
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.
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."
Purchase a copy of Laughing Allegra: The Inspiring Story of a Mother's Struggle and Triumph Raising a Daughter with Learning Disabilities
today!About the authors of Laughing Allegra: Anne Ford served as Chairman of the Board of the National Center for Learning Disabilities (NCLD) from 1989 to 2001. During her term as Chair, Mrs. Ford led the reorganization and broad expansion of NCLD, including establishing a presence in Washington, D.C., and organizing educational summits on learning disabilities in several regions of the United States. She was appointed to the Department of Health and Human Services Commission on Childhood Disabilities, as the representative for learning disabilities and was a member of the New York State Board of Regents Select Committee on Disabilities.John-Richard Thompson is an award-winning playwright and novelist. His play Indigo Rat, set in Berlin, Germany, during World War II, ran for a year in New York City and received a MAC Award from the Manhattan Association of Cabarets and Clubs. His other plays include Rain House, Water Sheerie, Fruit Bat Safari Camp, and The Glass Bird. He currently lives in New York City. He is the co-author of Laughing Allegra.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.
