The Perfect Daughter

Michael T. Bailey You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities Essay 13, p. 121-5.

All rights reserved. Reprinted by permission of Citadel Press/Kesington Publishing Corp. Copyright © 2001 Stanley D. Klein and Kim Schive

On April 2, 1988, at seven o'clock in the morning our first child was born. It had not been an easy delivery. It ended in an emergency cesarean section. The delivery room was full of medical personnel shrouded in gowns and masks. Finally the doctor handed me the swaddled, red, and wrinkled bundle that was Eleanor Sumner Bailey. Only my wife, Jonna, heard him say the ominous words: "Get a pediatrician."

Like all expectant parents, we had thought long and hard about a name. We wanted this newborn girl child to have a somewhat unusual name that reflected strength and pride. My own love of history was satisfied by Eleanor of Aquitaine, the great medieval queen of France and England, mother of Richard the Lion Hearted. Jonna's feminism and passion for justice came to some extent from Eleanor Roosevelt and all she stands for. Eleanor, we decided, was the perfect name. She would be the perfect daughter. "Your daughter has an extra chromosome...." These words came from the summoned pediatrician. I remember that he had no face—only a pair of dark eyes peering from the space between the surgical cap and mask.

"Your daughter has an extra chromosome...." I remember my first thought: "Oh! An extra chromosome. Smart kid. Chip off the old block." An extra anything seemed like a real advantage in this world.

"Your daughter has an extra chromosome. It's called Down syndrome. If you are interested, we have some literature you can read before you leave the hospital."

The masked pediatrician finished his sentence. Abruptly he turned and left the room. Two nurses began to sob. I looked at Jonna. She looked at me.

Thus began our wrenching, happy, challenging, humanizing, angry, crusading, broadening, rejoicing, proud adventure in parenting a child with a developmental disability. Over the past ten years, we have learned that there is very little wrong with our daughter, but a great deal wrong with the culture into which she was born.

As for so many other families of children with disabilities, our first experience was in a "medical" environment. It took us a while to realize that the "medical" environment thinks about children with disabilities using a "medical" model—a model that teaches parents to think of their child as sick. Subtle and not-so-subtle messages tell parents to do everything they can to make their child more "normal."

Several years ago, on the advice of a medical professional, we went to see a specialist who dealt with issues of growth. We were concerned that Eleanor was too small, and we wanted to know what we could do to make her taller. In other words we wanted to subject her to growth hormones in an effort to make her look more "normal."

What we learned was that she was in the fiftieth percentile for girls her age with Down syndrome. How much more normal could she be?

Eleanor was not sick. She did not need to be made well. She was not broken. She did not need to be fixed. What she needed was a family that recognized that girls with Down syndrome are short. There was nothing wrong with her.

Gradually, it became clear that I needed to view Eleanor's life not from my own experiences and expectations but from hers. The question should not have been: "How can I make her taller?" The question should have been: "What can I do to help the world accept her for the person she is?"

Realizing how ignorant I used to be about developmental disabilities makes it easier to accept the ignorance and prejudice we encounter daily. Most of us have experienced "the look" our children get in the grocery store checkout line or the condescending pat on the head.

It may appear well-meaning, but it is the face of prejudice. Prejudice leads to discrimination, and people with developmental disabilities have lived with and suffered from discrimination for generations. If we parents do not take the lead in confronting these attitudes, prejudice and discrimination will be our children's future. I want it to end here. I want it to end with our family.

Each of us needs to believe sincerely that our children are people, first and foremost, that they can be valued members of the community. Inclusion begins at home. The world will not respect your child if you do not. Set an example by proudly taking your child wherever it is appropriate for children to go. Believe in your heart that you are the world's leading expert on the needs of your family and your child. Let nothing change that belief.

Parenting a "special needs child" inevitably means dealing with experts. Doctors, therapists, educators, agency staff members, government officials, members of the clergy, neighbors, relatives, and the postman may all feel the need to give you advice. Much of this information will be useful. But never let "experts" take your place. You need to have your own dream for the happiest and best possible life for your child. Do not let anyone turn you away from it.

I remember the first time I realized that I was depending on an "expert" who turned out to be completely ignorant.

When Eleanor was four we signed her up for a three-day-a-week summer Parks and Recreation program. We were assured that her "inclusion" with other children her age would be guaranteed by the presence of an "inclusion specialist."

When I arrived to pick Eleanor up at the end of the first week, I saw Eleanor and Sam, a little boy with cerebral palsy, with the inclusion specialist in the farthest corner of the playground—no other children in sight. Inside the school building, I heard the other kids happily singing songs. As I waited in the hall, I could hear Eleanor whining and complaining as she approached the door—behaving just like any other upset four-year-old who was being excluded from an activity in which she wanted to participate.

When the inclusion specialist saw me, she asked, in a very exasperated voice, "Well, what do you think?"

"What do I think about what?" I replied.

She answered, "It seems to me that Eleanor's Down syndrome has gotten quite a bit worse since Wednesday!"

Another extra chromosome! I wondered if I should call the faceless pediatrician and inform him of this latest development.

At that moment, I realized I knew more about inclusion than this person, whatever her education or experience. Since then, I've learned to disregard "expert advice" that does not conform to our family's dream for our daughter. Our family knows best. Experts are there to help us achieve our dreams. They are not there to dream for us.

Eleanor is now ten years old. She is in third grade in our neighborhood school. She is fully included in her classroom. She has a full-time educational assistant and lots of friends. Last week she got her reading "letter" for having read seventy-five hundred pages in the last four years.

Does she read at grade level? No. Does she read? Yes, and she is proud of it.

Eleanor has a great life, and we believe it will only get better. Our family has worked long and hard to close the huge developmental disabilities institution in Oregon. Now we are working to see that Eleanor will have the opportunity to direct her own services when she becomes an adult. We believe that Eleanor should have the right to make her own decisions as she grows—even a few bad ones. She has the right to privacy, and when she is an adult, she will have the right to intimate relationships. She has the right to dream her own dreams and live her own life.

Sometimes Eleanor makes us cry. More often, she makes us laugh. Her triumphs are ours.

In more ways than we imagined, Eleanor is the daughter we dreamed about before her birth. She has the inner strength of a queen and the compassion of a social visionary. She cares more for other people than anyone I have ever known. She has a great deal to offer the world and will make her own irreplaceable contributions to her country, her community, and her family. She is the perfect daughter we expected.

Michael Bailey lives in Oregon with his wife, Jonna Sumner Schuder, and daughters, Eleanor (1988) and Taylor (1990). Michael is statewide community organizer for Community Partnerships, a project of the Oregon Developmental Disabilities Council. He is a commissioner of the Oregon Disabilities Commission and a registered lobbyist. Jonna is a staff attorney at the Oregon Advocacy Center and specializes in the rights of persons with disabilities.

Taylor is in the Talented and Gifted Program at Hollyrood Grade School and loves chess, reading, and soccer. Eleanor attends the Laurelhurst School and enjoys soccer and swimming. She has testified before the Oregon legislature several times and counts Governor Kitzhaber among her friends. She is very opinionated and likes to say that "people like me are like everyone else."