The Right to a Full Life

By Dorothy E. B. Fickenscher

Book synopsis:

An upbeat account of a mother's journey parenting twins with different disabilities. It is a tale of advocacy outlining the strategies used when working with doctors, teachers and neighbors. It describes how a mother

• Language: English
• Publisher: Writers Branding LLC
• Release date: Mar 3, 2023
• ISBN: 9781639456192

Book preview

Baby Steps

There was a knock on the door. Elaine got up from the chair, walked to the door, and opened it. Come in, come in! she said.

Two young men shook her hand, introduced themselves, and entered her apartment.

Almost immediately, they were sitting beside Elaine on the couch with a photo album open as Elaine pointed to pictures and talked about each one. She was totally engaged and soon they were as well.

Both men were students at the Uniformed Services University of Health Sciences in Bethesda, Maryland. As part of a class requirement, they must visit the home of a family with a family member with special needs. In this instance, the students were visiting the Germantown, Maryland, apartment of a young adult with Down syndrome. Elaine’s roommate, an individual without disabilities, was still at work. Later her twin brother, Louis, will stop by on his way home from his job. He has Tourette’s syndrome, but manages his tics well. Both Elaine and her brother will talk about their lives, what they want doctors to know, and then each will defer them to me, their mother, to help provide information about the medical challenges they faced earlier in their lives.

In 1984 ago I gave birth to these two. Elaine’s diagnosis of Down syndrome was devastating, and at the time I never imagined that Elaine would develop the skills and confidence to live in her own place. I never imagined the full life she would have, nor did I envision the importance of surrounding her with a supportive and caring community. Even though my son has significant challenges, I always believed he could make it in the world on his own terms. The fact that both are making their way in life on their own terms is wonderful.

I have learned a great deal raising my children. The friendships developed with others within the special-needs community have enriched my life, and I have learned that I am stronger and more resourceful than I imagined. I set out to write about one hundred things I learned about individuals with Down syndrome. But my effort evolved into a more personal account of the lessons I learned while raising both children. Perhaps the biggest challenge in raising my daughter was to raise my own expectations initially and then raise the expectations of others about what she could do, because she has the facial features of someone with Down syndrome and has always looked different. My son, on the other hand, didn’t and still does not look like he has a disability, and for him the challenge was getting the accommodations he needed so that he could develop to his potential.

What have I learned parenting these children while living out my own dreams? I have met and become friends with people I never would have had the opportunity to know, except that they, too, have children with special needs. I have learned that people with special needs have much to offer others, and so do I. I have no idea what life would have been like for me without Elaine and Louis, but I do know that many of the things I count as blessings are because, not in spite, of them.

I was born at the end of World War II into a loving family. My father had his own business. My mother, who stayed at home, was an unpaid partner in the family business, and in all ways made the family work. I have an older brother and two sisters. I was the second child, the first girl. As the first girl, I was named after both grandmothers – Dorothy Elaine. My family name was Buchanan, so my initials D.E.B. meant that a nickname for me was Debbie. In elementary school I preferred Dorothy, but when I attended a private school and nicknames were not allowed, I decided I liked to be called Debbie.

My mother had four children in five years. Being so close in age, at times we were the best of friends, and at other times we bickered heatedly. Breakfast and dinner were family times. We took vacations together. Family came first—always. Now that we are all adults, each of us has created a family with strong family ties. Everyone shows up for weddings and other family events. There is no such thing as a small event when our family gathers.

My parents encouraged each of us to develop as individuals. Education was important and my parents made sure each of us had a college education. I have a graduate degree plus did extensive postgraduate work. My liberal arts education helped me understand how to learn and how to problem solve, skills I have found incredibly useful in parenting and advocating for my children.

Although I wanted to have lots of children, I married late and found that it wasn’t easy to get pregnant. When I did have children, I had twins—something no one else in the family had experienced, just as no one had experience with children with special needs. As a result, no one doled out advice and no one second-guessed me until my children reached their late teens. Then the differences of opinion stemmed more from my vision that each child would be as independent and as fully included in the community as possible and their vision that Elaine would be in a group home or possibly a ranch where those with disabilities work, live and socialize in a community of people with disabilities. After much discussion my siblings have come to understand that my vision for Elaine can be a reality.

After college I worked a few years in Europe. When I returned to the United States, I first settled in Boston, Massachusetts where I found a job as a secretary at a radio station and then a job working as a secretary at Harvard University. As I had always wanted to teach, I applied to the Master of Arts in Teaching program at Brown University within two years of my return to the United States. After I earned my M.A.T. I became a teacher in the public schools in Montgomery County, Maryland. My education and the skills I learned in the classroom helped prepare me for handling the various challenges that I encountered as a parent of first one and then two children with special needs. The children were born at the old Walter Reed Hospital in Washington, DC. At the time of their births, we lived in a neighborhood in the nation’s capital. My daughter’s diagnosis of Trisomy 21 (Down syndrome) was confirmed at her two-week checkup, but my son was not diagnosed with Attention Deficit Disorder until he was six years old, shortly after we moved to St. Louis, Missouri. The true diagnosis of Tourette’s syndrome came at age nine, two years after we had relocated to Germantown, Maryland. By the time the children entered first grade, I was divorced and living on the East Coast while their father lived in the Midwest. I decided to keep my married name, Fickenscher, because I believed that it would be less confusing for Louis and Elaine if we all shared the same last name.

Becoming a Parent

The same day I learned I was having twins, I received a phone call from the social worker at the adoption agency we were using, notifying me that my husband and I had cleared the final hurtle toward adoption. Without a second thought, I stopped the adoption process and focused on the twins I was carrying.

For the next six months I read all I could about parenting twins because I thought that having twins was the main challenge I faced. As I was an elderly primagravida, the doctors informed me that I would be put on bed rest around the fifth month to prevent preeclampsia, a condition often associated with multiple births at my advanced age. I followed the doctors’ orders, went on maternity leave, and took to my bed. Within weeks of bed rest at home, I was hospitalized due to concerns that one of the twins might die in utero. I lay in bed in a ward in a local military hospital for just under three months. Three weeks before my thirty-ninth birthday, the doctors decided to induce labor. Twelve hours after labor started, my daughter was born and my son arrived twenty minutes after that. Both babies were healthy and approximately the same length and weight. We were so relieved!

After the births I was initially moved to a private room rather than to a ward, which would have been the normal sequence of events. The obstetrician who had monitored my pregnancy wanted to discuss concerns about our daughter. The doctor said that there were indications that she had Down syndrome. A sample of her blood had been sent to the lab for a chromosome test. He told us that we would have the definitive answer at her two-week checkup. We were concerned, but mostly thrilled that both babies were healthy. We decided to keep the doctor’s concerns about Elaine to ourselves when we announced the births.

After this discussion in the private room, I was moved into a room with four beds separated from each other by curtains. I was the only occupant. My husband left and I fell asleep. In the middle of the night the lights were turned on and another woman was moved to the bed next to mine. She settled in, and things quieted down. We were both asleep when the lights in the room were again turned on, and doctors surrounded her bed and woke her up. They told her that her baby was a mongoloid. She began sobbing. As she cried out for her husband, the