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The Right To A Full Life
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 explored options available to her family, looking for the right “fit” and how as a family they worked on the life skills that helped her son and daughter become independent. The importance of communities and the role they play in supporting an individual is explained. The balance between safety and individual autonomy is explored. The lessons shared are instructive to parents of children with and without disabilities.
Book Excerpts
Being an advocate when the children were infants involved asking a lot of questions to make certain I understood the doctor’s instructions. Then as Elaine began seeing specialists and therapists, I was the person who not only kept track of what happened at each appointment, I also was the one who shared what the other specialists were saying about, and prescribing for, Elaine. In essence, I was her caseworker. I kept a spiral notebook with a brief summary of each visit with a doctor or a therapist. This record keeping is now a routine at our HMO, but at the time the notebook definitely helped me. One time, the notebook helped shift the discussion when the professional seeing my daughter told me that my account of an earlier visit could not possibly be correct. I just handed over the notebook and the tone of our conversation shifted.
Dorothy Fickensher Louis has always been a terrific advocate for Elaine. Long before she had language skills, she developed a sign language of sorts. We all understood it, but Louis was the one who put it into words. Eventually, we did learn American Sign Language, but Louis—from the first— informed a caregiver or nurse what Elaine meant when she used one of her signs. Louis has continued to advocate and at times translate for Elaine. When she was hospitalized in her twenties for severe pain in her abdominal area, he sat with her during the one morning I had to go to work. He made certain the medical team understood that she had a high tolerance for pain and that they should take her pain seriously.
Dorothy Fickensher Elaine, with her special needs, is not so different from my mother when she began to need support in her old age. We wanted my mother to be safe, but mother was fierce in her desire to remain as much in control of her life as possible. Safety is something everyone understands. Autonomy is something we tend to understand best when our own is threatened. Not everyone understands the importance of autonomy for Elaine. The type of community I hope to build for Elaine is not so different from what I hope to have supporting me as I begin to experience the challenges of old age. In other words I want for both Elaine and for me a community that will allow each of us to live the lives we want while minimizing risks. What does that mean? It means having the right to plan our activities, have privacy, and make choices about what and when we want to eat and where we want to live.
Dorothy Fickensher Our Happy Customers!
Elaine Mack
Don’t let the size of this book deceive you. It is a powerful work, told by a woman who gave birth to twins, one of whom has Down syndrome. The other, who seemed fine at first, turned out to have Tourette’s syndrome, which was misdiagnosed as ADD. The mother tells how she struggled through years of medical issues with her daughter, faced the challenges of a school system that failed to adequately meet the needs of her son, and, through initiative and perseverance, made possible a satisfying, rewarding, and independent life for each of her children. At times heartbreaking, at other times invigorating, at all times inspiring, this book should be on the reading list of all parents and educators, regardless of the needs of their children or students.
Miz Bee
This is a very personal and loving memoir written by a parent who adapted to the trials of caring for a child with Down Syndrome and another with Tourette Syndrome. This book is an excellent guide for other parents and caregivers who may be facing the same challenges. It gives some innovative ways in how to create an independent life for these children as they become adults and how to prepare for their future care. It gives excellent advice regarding guardianship and the legal problems that may ensue should one become a guardian for a child who needs lifetime supervision.
DS
When I started reading this book, I found I couldn’t put it down. It is a fascinating story of how a mother, coping with young twins diagnosed with Down Syndrome and Tourette Syndrome, managed to help each of them build a fulfilling and rewarding life. It is an inspiration to anyone trying to reach a goal that may look unattainable at first but which, with determination, patience and an ability to stay focused on the result, is reached and then some.
Amazon Customer
Dorothy Fickenscher is my aunt and the children she writes about in this book are my cousins. Reading my Aunt's words help to describe her tenacity and grace as she built a strategy for her children to live full lives. My twelve year old daughter stated after reading the first two chapters, "This should be required reading for everyone." My aunt writes in a positive tone, but also offers realistic and practical examples of navigating schools, work, and housing for individuals who need advocates. At times I laughed out loud at the raw honesty of situations she describes, and at times I was frustrated for the way she and my cousins were treated by healthcare and educational professionals. The most important concept that I gained after reading this book is this: Everyone needs and deserves a community. We are taught to build our own community for educational, social, spiritual, health related reasons, etc. Some of us need help establishing and maintaining communities. This book will inspire not only parent, but all of us in a position to help and support. I hope Aunt Debbie will write more books that dive deeper into how she has gone about setting up the communities in place for her children. I know there are more stories to tell.
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.
Dorothy Fickensher Author