Thursday, July 12, 2018

In Memory of My Sister Kay, November 8, 1949 - June 24, 2018

Some of you may know that I come from a big family. My parents had six children. There were two boys followed by four girls. I am the fifth child of those six. 

I want to tell you about my sister, Cherilynn Kay. She was the fourth child and was four years older than me. Kay was born in 1949 and it was clear early on that something was not right. Since I wasn't born until 1954, I'm not sure exactly when they first realized there was a problem. For as long as I can remember, she was labeled "mentally retarded" which was what they called it in those days. My earliest recollections are of her on the floor, flailing her arms and legs while screaming for hours and hours. She could not talk or communicate at all for a very long time. 
Cherilynn Kay Skelton, November 8, 1949 - June 24, 2018

As you might imagine, my parents were devastated and desperate. I remember them taking her to specialists in Dallas, Fort Worth, Houston, Shreveport, and anywhere else they thought someone could help. The diagnosis was always the same and they all recommended that she should be placed in an institution and basically forgotten. I don't think that was an unusual recommendation at that time, but my parents would not hear of it. 

When I started school in 1960, she was in the same school as me but in a special ed class. I'm not exactly sure what year she started school. Let me just tell you that in the early 1960s, special ed was vastly different than it is today. There was not much consideration of what was best for those kids nor of what they needed. Her class was in the school basement and I don't think they ever even took them outside for recess. They were kept totally separate from the general education kids. There was no such thing as mainstreaming. By this time Kay was just starting to be able speak, but she was always difficult to understand. She had a severe speech impediment. Most people could never understand her speech. I was probably the person who could best understand her and when I was a teenager I would work with her every summer to improve her pronunciation. Over the years, with a lot of practice, my name evolved from "Bicki" to "V-V-V-Vicki." I loved that once she learned how to say it she very carefully pronounced my name for the rest of her life. 

In addition to her other challenges, Kay was legally blind. Sometime around 1961 or 1962, Mom and Dad placed Kay in the Texas State School for the Blind in Austin. It was basically a boarding school. She didn't do well there and I think she was only there for one year. Shortly after that, she was placed in the Texas State School for the Mentally Retarded in Mexia, Texas. While it was a full residential program, my parents treated it like a boarding school. She went to school in September and came home for Thanksgiving, Christmas, Easter, and every summer. She made tremendous progress in this home and slowly learned to read and write a little bit. A speech therapist worked with her to improve her speech with limited success. In 1964 when our family relocated to Corpus Christi, Kay stayed in Mexia until the Corpus Christi State School opened in 1970. Kay was among its first residents. After she was relocated to Corpus Christi, she came home every weekend. 

In the mid-1970s, there were a series of problems at the CC State School which included allegations of abuse and neglect as well as several instances of residents who wandered off. When Patrick and I got married in 1975, Mom made the decision to move Kay back home. While that did protect Kay from all of the things that were going on at the State School, she immediately started to regress because she was not getting reinforcing therapy and classes.

When my Dad died in 2001, Kay took it quite hard. My parents already had cemetery plots and had previously had headstones set for themselves and for Kay. When she saw her own grave she assumed that meant that her own death was imminent. It took us a long time to calm her down and I'm not sure she ever understood completely.

After a few years, Mom was no longer able to take care of her and we moved Kay into an assisted living group home in Corpus Christi.  After Mom died, my sister Bylinda and I took over shared responsibility for Kay.  

We later moved her to Seguin near Bylinda where she lived for the past several years. In May of this year we moved Kay to a group home in San Antonio, about six miles from our home in Converse. She liked the new home because it was all female. (Her home in Seguin was coed.) She also liked the fact that the residents of this home go to church on Sunday morning. She really missed that in her other homes. 

Mom was never willing to talk to us about Kay's diagnosis. None of her brothers and sisters knew what caused her problems or whether they were genetic or related to something else. Mom had told us that she almost miscarried with Kay and was given a medication to stop it. She kind of led us to believe that medication might have caused Kay's problems. Once we took over her care, we were able to do some research in her medical records and discovered that her actual diagnosis was Dandy-Walker Syndrome. Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it. 

I have long contended that if Kay had been born later, her diagnosis would not have been "mental retardation." She could do many things and had an amazing memory. She could not live on her own because she could not handle money and was way too trusting of strangers. But she could take care of her personal grooming. Her memory was almost at a savant level. If she ever met you, she would never forget your name. She never forgot her nieces and nephews birthdays or wedding anniversaries. She could remember every single one of our cousin's names and birthdays. She knew all the lyrics to almost every song in the Baptist Hymnal. She rarely forgot anything. More than anything else, Kay wanted to be like the rest of us. She wanted to fall in love and get married and have babies of her own. It always broke my heart when she would talk about that.

On Sunday morning, June 24, the ladies at Kay's new home got ready for church and were heading out to get in the van. Kay was excited to be going back to church. On the way out the door, Kay collapsed with a heart attack. The caregiver started CPR and called 911. The paramedics worked on her for about 30 minutes but were not able to revive her. To say we are shocked is an understatement. She had just recently had her annual physical and was given a clean bill of health. She had no history of heart problems. She didn't have any of the classic warning signs. 

After a lot of discussion and some scheduling problems, we have decided to have her remains cremated. We will hold a family memorial service at the gravesite in Bryans Mill, Texas sometime this fall. She will be laid to rest next to Mom and Dad, just as they wanted. 





2 comments:

  1. Beautiful story! She is loved and missed!

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  2. Vicki,
    First of all,my sincere condolences to you and your family. Of course as a teacher , this makes me incredibly sad. Knowing how we work so diligently to help our special students these days, it saddens me that she was labeled "mentally retarded" and not given the chances to succeed that students are given today. Logically, I know she wasn't singled out and that it was just the way special education was run back then. It broke my heart when she wrote ,"Kay wanted to be like the rest of us." My prayers are with you. I know her passing so suddenly had to very hard for you. Hugs, Peggy

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