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Laughing Allegra: The Inspiring Story of a Mother's Struggle and Triumph Raising a Daughter With Learning Disabilities

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Introduction

A Guide to the Heart

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.

  

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.

 


Laughing Allegra: The Inspiring Story of a Mother's Struggle and Triumph Raising a Daughter With Learning Disabilities
by by Anne Ford

  • Genres: Education, Parenting
  • hardcover: 240 pages
  • Publisher: Newmarket Press
  • ISBN-10: 155704564X
  • ISBN-13: 9781557045645