Living with a Sibling and Her disABILITY
Published: 2021-06-07 - Updated: 2021-07-31
Author: Kathleen M. Cleaver | Contact: Disabled World (Disabled-World.com)
Synopsis: Kathleen M. Cleaver writes on the positive and negative effects that a sibling with a disability has on a family and the siblings themselves.
What the Studies Say
There are positive and negative effects that a sibling with a disability has on a family and the siblings. Hale and Gamble (1987) found that children with disabled siblings "appear to have more positive and fewer negative behavioral interactions than those with non-disabled siblings." Powell and Ogle (1985) go on to say that "these positive aspects include higher levels of empathy and altruism, increased tolerance for differences, and increased sense of maturity and responsibility and pride in the siblings' accomplishments." Adversely, words like neglect, anxiety, overly responsible, and isolation are words repeated in professional articles.
Me with my sister.
Your New Baby Sister is Blind
I was seven-years old when my sister, Barbara was born. My brothers were eight and ten. I don't remember how we were told that our new baby sister was blind; all I remember was being excited for our sister's arrival home. We ran upstairs to see a tiny dark-haired infant sleeping in a bassinet. As we gazed in amazement at our new sister, she awoke and opened her eyes. I remember us shouting to my mother. "She opened her eyes!" The only form of blindness we knew was when you closed your eyes or wore a blindfold. Over time, we learned about the levels of a visual impairment and its effects. As Barbara grew and developed, so did her list of disabilities. She began having seizures when she was two -years- old. The older Barbara became the more her developmental delays increased. She was diagnosed with a moderate hearing loss when she was five-years-old. Barbara was labeled "multiply handicapped."
My sister as a baby.
Most of my memories of growing up with Barbara are happy memories. She enjoyed going for walks in her stroller, being sung to and rough-housing with me and my brothers. She loved listening to music. She loved to sing. She could sing the melody perfectly; the words were a different story! When she was older, she tried to steal records from our record collections. The Beatles were her favorite. She had a bad habit of chewing the labels off of records but could somehow identify the records by taste and smell!! Barbara was the only one who liked to listen to me play when I had a brief stint with violin lessons. She was my playmate when no one else was around. I marveled at her "super powers." She could climb to the top of our crabapple tree much to the horror of my parents. She learned to navigate her bike around the block with my brothers and me running after her. She was fearless in the water. Something I envied since I was afraid of the water and never learned to swim. Without ever seeing a calendar, she knew the day, the date and the month. She remembered the birth dates of family members. The happiest moment for my family came after Barbara's sixth eye surgery. She finally had enough vision in her left eye to see the lights on the Christmas tree.
I was envious of my sister. By nature, I am a worrier. I worried about my schoolwork and my grades. I thought Barbara was lucky because she didn't have to take tests or do homework. There were times I worried about my brothers getting hurt or in trouble. I remember how scared I was during the Cuban Missile Crisis and seeing the pictures of the Vietnam War on the nightly news. I envied Barbara because she lived in a "happy world" devoid of danger and hate. Barbara was and still is easy to please. She loves summer, sitting on a garden swing in the sunshine, floating on a raft in the pool, listening to music, anything Christmas, parades and being around friends and family.
My sister as a young girl.
Some of Barbara's behaviors were strange. She rocked and flapped her hands. She liked to chew on metal. People stared at her. Parents pulled their children away when they tried to ask questions or interact with Barbara. I learned to stare back and walk away. Barbara was hospitalized eight times by the time she was four-years-old. She had her first seizure when she was two. It was a frightening sight. Her body was twitching and her lips were blue. I remember the panic on my mother's face. Our doctor, whose office was around the corner, came rushing over. Our neighbor sprinkled holy water on Barbara as the ambulance prepared to rush her to the hospital.
Barbara's childhood was not difficult for me when I was younger. It wasn't until I was older that I realized how hard and heart-breaking it was for my parents. She was born at a time when the Individuals with Disabilities Education Act (IDEA) and Free and Appropriate Education (FAPE) did not exist. Except for state institutions, day programs for children with multiple disabilities were almost non-existent. My parents found a small day school in Germantown where my sister attended until she was 21. They fought for free busing. They were her early intervention teachers and therapists. They did what was necessary to help Barbara grow into the wonderful person she is today.
As I grew older, my life was changing. During my teen years, I resented the freedom my brothers had while I was always the designated "babysitter' for my sister. As an adult, I had my own life and family. My oldest daughter was multiply disabled. My parents became ill and needed assistance. When my father died, it became increasingly difficult for my mother to care for Barbara. I became respite, aid and advocate for my mother and Barbara. When Mom became too ill to care for her, Barbara moved into our home. Trying to work, caring for my sister and daughter as well as the rest of my family was not fair for any of us.
Life Changing Decisions
When a parent has a son or daughter needing a lifetime of care, their greatest fear is who will take care of them when the parent dies. My parents' wish was that Barbara would always live with me. Barbara lived with us for six months. Against my parents wishes I decided to move Barbara to Divine Providence Village, an intermediate care facility (ICF) for women with intellectual disabilities. It was the right decision for Barbara and my family. Barbara is very happy there. She has her day program, activities, and friends. Recently, our daughter, who is multiply disabled, became Barbara's roommate.
My sister as an adult.
Look for the Beauty
Yes, having a sibling who is disabled can be hard. Sometimes it even sucks!! It can also be fun and beautiful. Celebrate every milestone on matter how little it is. Allow your sibling to teach you patience, endurance, and strength, Marvel how their smile brings joy and their unconditional love draws people together.
About Kathleen M. Cleaver
Kathleen M. Cleaver holds a Bachelor’s degree in elementary education and the education of children whose primary disability is a visual impairment (TVI). During her thirty year career as a teacher, Kathleen received the Penn-Del AER Elinor Long Award and the AER Membership Award for her service and contributions to the education of children with visual impairments. She also received the Elizabeth Nolan O’Donnell Achievement Award for years of dedicated service to St. Lucy Day School for Children with Visual Impairments.
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Cite This Page (APA): Kathleen M. Cleaver. (2021, June 7). Living with a Sibling and Her disABILITY. Disabled World. Retrieved January 20, 2022 from www.disabled-world.com/disability/blogs/sibling-disability.php