Having grown up with a severely mentally disabled sibling, I learned early on that it is not uncommon for the developmentally challenged individual and his or her parents to become the center of attention, overshadowing the other children in the family. The lives of the siblings continue to be deeply affected into adulthood as they may ultimately assume complete responsibility for their brother or sister after the parents have passed away.
In sharing my personal story through this blog, I have several objectives: (1) To reach out to the Special Siblings of the world to let them know that they are not alone and to give them a voice; (2) To raise the awareness of professionals who assist families who have a loved one with special needs; and (3) To encourage parents to implement a life plan and engage in legal planning early on. This is not only in the best interest of the Special family member but also minimizes burdens on the Special Sibling who may ultimately take charge.
I was the oldest of three children and Kimmy was born in 1956 when I was 18 months old. She unfortunately contracted encephalitis at the age of 13 months which left her profoundly retarded. My parents told me that she functioned at the level of a 3 month old. My Special Sister was also physically impaired and unable to walk, talk or hear.
Kimmy lived with us until she was 7 years old when she was placed in a state institution. In the meantime, family life revolved around her needs and tantrums. It was impossible for us to go places together. Taking her out in public was not feasible because she often screamed loudly, was disruptive and generally unmanageable. Although she was unable to walk, she was certainly strong and would not be still. I remember her crawling around the house breaking things and hurting herself and pulling my hair. The solution was a custom made 6 foot high “playpen” with a roof that filled most of our dining area.
Bringing other kids into our home to play or to have sleepovers was problematic. I had to constantly explain her condition to people before exposing them to her and to describe the cage like apparatus that kept her and us safe. The home atmosphere was extremely unsettling and it was difficult to have fun and relax with my friends.
That being said, I do not remember feeling embarrassed or uncomfortable and was very matter of fact in my description of her. I felt protective, was deeply concerned for Kimmy’s well being and felt responsible for her. She often went into convulsions which was very frightening. Until I grew up, I held the fantasy that she would be miraculously cured. Every night, my younger sister Tammy and I innocently prayed “God, please let Kimmy get well”.
My parents were overprotective because they feared that something would happen to me. While I did not live in a “bubble”, I was not allowed to participate in many activities or go places with my peers. It seemed that my mom was always waiting for “the other shoe to drop”.
My father passed away at a young age as did my other sister, Tammy. Once I became an attorney, my mother did not want to cope with being Kimmy’s decision maker any longer; so I stepped up to the plate and petitioned to be appointed her legal guardian. Sooner or later, most Special Siblings take on this responsibility whether or not the matter is legally formalized.
The task was not arduous since she was already institutionalized by that point. She was on Medicaid; consequently, there was no financial obligation on my part. (Many Special Siblings do assume financial responsibility for their loved one when proper plans have not been made by the parents.) I routinely participated in her case management conferences. Her social worker, Susan, was wonderful and kept me fully apprised of her medical and developmental status. Kimmy was loved and well cared for. From time to time, I needed to authorize minor treatments or procedures. By and large, things were smooth.
Then, the “other shoe” did drop. When she was 35 years old, she accidentally fell down a flight of steps at the institution. I’ll never forget the day that the call came from Susan, her social worker. I thought the purpose was to discuss a routine medical situation but was informed that this time the situation was very serious. Kimmy was in a coma and on life support. I was faced with the most difficult decision of my entire life because my dear sister had never been able to articulate whether she would want life support terminated if she were in a persistent vegetative state. How could I make that ultimate decision for another human being without knowing her wishes? I decided to discuss the dilemma with a rabbi, a legal ethicist and to obtain a second medical opinion. This is where I would like to pay special tribute to Clifton Kruse, a nationally renowned and respected elder law attorney. He had met me perhaps once prior to that time; yet he spent at least half an hour on the phone discussing all aspects of the problem. I will be forever grateful for his compassion. I was also fortunate to have the full support of my family throughout this ordeal and was at peace when I made the decision to “pull the plug”.
The funeral was one of the hardest days in my entire life. I reflected upon her life and was so sad that she never had the opportunity to have friendships and to see the world. I was sad for myself – that I did not get to have a “normal” relationship with her and that we would never raise our children together. Most of all, I was sad for my mother – for the pain and sorrow that she had experienced.
MAKING SENSE OF IT ALL
We have the opportunity to reframe our history and heritage in a positive light. The alternative is to constantly play the role of the victim and to be angry with our lot in life. My approach is to examine past experiences and to figure out what I can learn. I try to look at obstacles, pain and setbacks as opportunities for growth. The following are just a few lessons that I am grateful to have learned:
Lesson One: The gift of a family and loving friends is the most precious of all. Don’t take it for granted. I can never deny the sadness and sometimes even resentment that I feel at not having the opportunity of experiencing a “normal” relationship with my sister. When I meet people who have strained relationships or even no contact with their siblings or other loved ones, I always encourage them to take that first step toward reconciliation.
Lesson Two: Be compassionate under all circumstances. Don’t presume that you know what a stranger or even a neighbor is going through. Maybe they are carrying a hidden burden that you could not even begin to understand. Try to look beyond the external façade. Even if they are grouchy, give them a smile. It could make a difference in their day.
Lesson Three: Be particularly compassionate to people whose difficulties are obvious – whether they be physical or mental. Treat them with dignity and honor. The disabled are complete human beings and deserve to be treated accordingly.
Lesson Four: Look for the opportunity to be of service to others. Examine your purpose in life! I know that I chose my profession because of my deep seated need to help others. It is so rewarding to know that I have made a difference in a family’s life. Even a small action can have significant impact.
Lesson Five: Stand up for your beliefs and never apologize for who you are or who your family is. Presume that others will accept you and if they don’t, they don’t need to be part of your life.
Lesson Six: Face your problems head on. Believe me, somebody else has bigger obstacles than you!
By opening up my experiences and feelings, I hope that I have been able to influence the perspective of other Special Siblings who have had challenges similar to mine. My great hope is that each of you face them with courage and grace. You can transform your pain into something good for yourself and something good for the world. While I always deeply loved my Special Sister Kimmy, I did not fully understand the lessons that she taught me by being part of my life – until I took the time to write this blog. She forever resides in the depths of my heart.
The Posternock Apell, PC Special Ed Team thanks Guest Blogger Cynthia Sharp for contributing her personal story.