That was the night I finally told him that my daughter had been diagnosed by a prominent New York pediatric neurologist as being “borderline retarded.” The doctor had recommended that she be institutionalized. She was 5 years old.
I knew immediately that I couldn’t institutionalize Allegra. She wouldn’t die if I took the doctor’s advice, but to lock her away for the rest of her life? Was that so different from death?
A year later her diagnosis was changed to severe, multiple learning disabilities. I realized that my father’s vow to find a cure would be futile.
This was 1978, a time when there was very little known about learning disabilities. Most pediatricians knew nothing, one school after another rejected her and even I was reluctant to speak about her disability to my closest friends.
Most people equate a learning disability with dyslexia–reversing letters and words. But there are many other kinds of learning disabilities of varying levels of severity. LD is a neurological disorder that causes the brain to perceive even the simplest information as a chaotic jumble of words, numbers and thoughts. Every aspect of a child’s life can be affected: reading a book, playing a game, interacting with other children.
No one in my family could believe Allegra had any kind of disability, much less one as severe as hers. To them a disability was physical, something you could see. They knew her as a happy, normal child. That’s how it is with a learning disability–you don’t see obvious physical symptoms.
But as she grew out of her preschool years, it became apparent to me that Allegra wasn’t like other children. She wasn’t able to follow directions to the simplest games. For that reason, she had very few friends. The most basic information baffled her. For example, she had no idea that $50 was more than five cents. Sometimes, by the pool, she would pretend to read–I knew she was pretending because the book was upside down.
She withdrew into her own world where she could fantasize about being a ballet dancer, a Broadway actress or a figure skater. In the real world, ballet class and music lessons led only to confusion, frustration and, ultimately, disappointment.
As for school, there was no way she could be included in a mainstream classroom. I went through every special school in New York, only to be told over and over: “She doesn’t belong here.”
The last straw came a few months after the diagnosis, when I was at a pay phone on 72d Street, waiting for an answer from the very last school on my list. Finally a cold voice came on–I can still hear it–and said: “I’m sorry, but we feel this isn’t the place for her.” I hung up and stared at the phone in tears.
I had lived my life as the daughter of Henry Ford II, and for the first time in my life I faced a problem that neither money nor position could solve. I nearly gave up, but I knew I couldn’t. Without me, my daughter stood no chance of making it.
I was figuring out how to start my own school for Allegra and others like her when one of the schools that rejected her had a change of heart. When I saw the 30 other students in her school, my own heart sank. They all looked and acted far more disabled than Allegra–at least that was my perception. Yet when Allegra took her place among them her troubles began to disappear. She had found a space in her life where she was comfortable.
Like my father, I never stopped hoping there was a cure, but over the years I came to realize it was time to forget my problems and focus on helping others who were in the same situation. Surely there was another mother at another phone booth somewhere, hearing that her child had been rejected. Since 1989 I have been chairman of the National Center for Learning Disabilities, an organization that has helped thousands of children like my daughter.
Allegra has laid most of my early fears for her future to rest. She is now 27 and works as an assistant to a teacher in a Head Start program. She lives on her own in a small town in upstate New York. She completed her academic years in special schools and has realized her childhood dream of being a figure skater. She now competes in adult nationals across the country. When Allegra glides effortlessly over the ice, I see her free of all the frustrations that constricted so much of her life, and I feel so proud of what she has accomplished.
For the millions of parents with a child like Allegra, the most important thing I can tell you is this: neither status nor wealth matters as much as your support. The simple fact is that you–the parent–are the most powerful advocate your child will ever have.
