Changes Challenges and Choices - Caring for a Disabled Family Member
Author: Kathleen M. Cleaver | Contact: Disabled World (Disabled-World.com)
Peer-Reviewed Publication: N/A
Additional References: Carers - Caregivers Publications
Synopsis: Kathleen M. Cleaver writes regarding the changes and challenges of unexpected lifestyle changes and choices that need to be made. What happens to a disabled child when they turn 21 and become an adult? For my sister and my parents there were many changes and challenges but very few choices. Changes become necessary when caring for a disabled adult becomes challenging for parents and guardians. These challenges can be caused by many factors.
"Change is the only constant" is a famous quote by the Greek Philosopher, Heracllitus. He wrote that "No man ever steps into the same river, for it is not the same river, and he is not the same man." The river changes just as our lives change. Sometimes the river is calm and beautiful. Other times, it moves violently, overflowing its banks, causing damage to lives and property.
There are many lifestyle changes that we plan and look forward to like marriage, a new baby, moving to a new home, a new job or retirement. Then there are the unexpected changes like divorce, illness, a natural disaster, death, and fear of the unknown. The most difficult changes are changes that are sudden and unexpected. Mary Shelley wrote, "Nothing is so painful to the human mind as a great and sudden change." I would add to that the challenge of making a lifestyle change for someone who is unable to.
Bringing a new baby into the world can be scary, but is also a beautiful and celebrated event. You know your life will change. There will be challenges and choices to be made by the parents. When children grow up they will own their lifestyle changes, challenges and choices. But what if the healthy baby you were expecting is born with a severe disability? You are thrown into a world you know nothing about. Friends and family don't know how to react. You are faced with a lifetime of choices, challenges, and choices that can be difficult and heartbreaking. It is love, knowledge, and support that guide you to face the changes, challenges, and choices before you.
My sister was diagnosed as legally blind shortly after she was born. As she grew, she was diagnosed as intellectually and hearing impaired. In today's world of labels, she would probably also be diagnosed as autistic. The challenges my parents faced were many, but their choices were few. Public laws to provide services for multiply disabled children did not exist. My parents had two choices: keep my sister home or place her in a state institution. They chose to keep her home. They were on their own without books or the internet to guide them. I have to say, looking back, they did a wonderful job, raising my sister. They navigated their way through my sister's doctor appointments, surgeries, difficult behaviors, and negative comments while raising her three older siblings. Sometimes, we became two families in one. My father would take my brothers and my place, and my mother would stay home with my sister. Partly, to give my mother a break from my brothers and myself. Other times, there were places where my sister would be uncomfortable. My parents spent many hours teaching my sister to walk and talk. They surrounded her with music. They found ways to help her feel comfortable and reduce her self stimming behaviors.
When my sister was four years old they found a small school, founded by a blind woman, for children who were blind and multiply disabled. My sister attended the school until she was 21. My parents became very involved in the school, helping to raise money to expand the original building to accommodate more children, increasing services, and pushing to pass legislation for school districts to pay for the tuition and provide busing to programs not provided in the public school.
What happens to a disabled child when they turn 21 and become an adult? For my sister and my parents there were many changes and challenges but very few choices.
School ended. Support services ended. Fortunately, day programs for the multiply disabled were opening. Institutions were closing, and group homes were opening. Again, my parents jumped on the "bandwagon" and became involved in the Association for Retarded Citizens (ARC). They procured the funding for my sister to attend a day program. They chose to have my sister remain living with them. My sister remained in my parent's home until my mother became ill at the age of 90. We should be thankful for the parents who faced these difficult challenges and chose to bring awareness to the need for appropriate and compassionate care for disabled children and adults.
A week before my sister's twenty-second birthday, my husband and I experienced the birth of our first child, a beautiful, dark haired, full term baby girl. At that moment, our lives changed drastically. Something was wrong! After a brief peek at our daughter, she was whisked away to the NICU. Within hours of her birth, she started having episodes of apnea and seizures. Too distraught to question why or how, we left all treatment decisions to the doctors. Finally, after three weeks, our daughter stabilized, and we brought her home. Except for having to administer seizure medication twice a day, life with our new daughter presented much the same changes, challenges, and choices that any new parents would face.
Our lives took a drastic turn during our daughter's three-month check-up. Her head circumference was measuring below the normal range, which meant that her brain wasn't developing properly. She wasn't using her right hand to grab at toys. Her eyes were turning inward. Our lives changed. Joy turned to grief. All the literature about raising your baby and childhood development no longer seemed to fit our daughter.
We were faced with many challenges, but fortunately the world was changing for the disabled. We had the choice of early intervention programs. Our insurance covered private therapy. Public schools were opening programs for the multiply disabled. We were able to choose what, we thought, was best for our daughter. The challenge was making the best choices for our daughter, our family and the misled belief that the more intervention and therapy our daughter received the less disabled she would be. Looking back, I wish I had focused less on her disability and more on the beautiful and loving baby she was. I wish I had taken my mother's advice when she said, "Just enjoy her".
When our daughter turned 21 funding was available for adult day programs and supportive employment was available for disabled adults. We had our choice of programs. The challenge was picking the best program for our daughter. Because of her severe disability, supportive employment was not an option. There were many things to consider when choosing an adult day program. They varied in size, hours of operation, quality of services offered, and driving distance from our home. We had to choose a program that not only would be beneficial for our daughter, but also fit into the schedule of two working parents. It was a choice between the best program and the most appropriate program. We chose the most appropriate program.
Changes become necessary when caring for a disabled adult becomes challenging for parents and guardians. These challenges can be caused by many factors. Are there family members willing to take on the responsibility of caring for a severely disabled sibling? Does the disabled adult want to live with peers? Is the health of the parent, guardian, or disabled adult declining? What supportive services are available for a disabled adult? Finally, what is the severity of the disability? What is the best living arrangement for the disabled adult?
Fortunately, today, we have many choices. There is in-home care. There are community-based, life-sharing homes, independent living apartments and intermediate care facilities. The challenge is not choosing the best living arrangement; the challenge is obtaining the best living arrangement. Oftentimes there are waiting lists. The quality of care can differ due to staffing and oversight. Intermediate facilities are expensive and are considered restrictive. When my sister came to live with us, we researched in-home care for her and our daughter. We found it not to be appropriate for the needs of our family. We felt that "our girls" needed more supervision and medical care than what was offered in community and life-sharing homes. We chose an Intermediate care facility even though it is the least popular living arrangement with government agencies and inclusion facilitators. Our girls are very happy and are well cared for.
My words of advice: The most important therapy you can give your child is your love. Celebrate every milestone, no matter how big or small it is. Don't get caught up in new therapies, treatments, and programs. More is not always better. Do your research, but also listen to your heart. Accept the changes, embrace the challenges, and choose what is best for your disabled child/adult and your family.
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. (2022, May 8). Changes Challenges and Choices - Caring for a Disabled Family Member. Disabled World. Retrieved January 29, 2023 from www.disabled-world.com/disability/caregivers/changes.php
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