Roots and Fences: A Generational Story of Friends, Family and Disability

Courtesy of Cynthia Kristufek. Sharon Gregory Duncan is a doer. Sharon has always been a doer.

She is a highly accomplished educator and administrator for students with disabilities. She is also the founder and director of Abide in Me , a charitable organization that provides assistance to individuals with disabilities for leading engaged lives. She is a professor at Purdue Calumet University teaching graduate courses in the Intensive Licensure Special Education teacher preparation program. She is the mother of three adult children and she has three grandchildren.

Roots and Fences

They enjoy travel and hanging out with their dog, Nellie. They are close with family and they are fortunate to have made some good and lifelong friendships. Her first published book is Roots and Fences: The link between the two is not completely understood and the science is relatively new. Medical researchers and practitioners believe that it does have something to do with the extra copy of chromosome The extra copy increases the production of amyloid beta which accumulates in the brain and causes loss of brain cells neurons.

This seems to occur earlier for individuals with Down syndrome possibly, because of the chromosomal issues. When someone has Alzheimer's disease the same process occurs. Since people with Down syndrome are no longer institutionalized they are living longer and we are seeing people with DS with brain degeneration.

She lived until her late fifties. Initial symptoms of Alzheimer's for individuals with Down Syndrome are first seen around age It occurs three to five times in greater numbers than in the general population. As far as being uncomfortable. Stigma has long been associated with having a child with a disability. Up until just recently, society thought someone usually the mother must have done something wrong to have a child with a disability. Many people are uncomfortable with anything they do not understand.

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Some people with disabilities can look a bit scary to people who do not live or work with them. People with disabilities may come with all kinds of equipment: Some folks with disabilities may have unusual behaviors, they may make sounds, they may drool, etc I talk a great deal with parents of people with disabilities to empower their loved one.

I find that so disrespectful. The more people with any type of disability are valued and included as true participating members of society, people will be more comfortable. The two versions of your Aunt Jackie? The life she displayed before adults and the one with children. What is the phenomena behind the two personas? I personally never thought about it until I started writing and thinking deeply about her life situation, and like you I found it very interesting.

These are some of my thoughts on this, but the truth is probably only known to Jackie. How I wish she was still alive and able to talk with me. So she would figure it out as well as she could She was also raised to be very obedient. When she was around kids I think she was her best self, she could let her guard down, just relax and have fun. We as young children never told her what to do, because we just enjoyed her fun spirit.

Jackie was genuine, funny, talkative, liked to play games, tell jokes, dance and sing. She could respond to emergencies appropriately and spoke so clearly we had no clue she was disabled. I know it sounds crazy that we did not see her as disabled, but we did not. She knew we loved her. She knew her parents loved her.

You mentioned that and I thought of my dad. After he was diagnosed with Alzheimer's he was very literal. If you asked him how he slept - he would say, with my eyes closed. Explain that with disabled people? I have had much experience with that working with students with learning differences. Everything is cut and dry, because they cannot see the big picture. Predictable schedules are so important to relieve their stress. I look at Blooms Taxonomy and the so called stages of intellect.

It's distressing to think the medical community reacted that way not that long ago. What was the single biggest change and when did that change take place in the science and medicine. Mongoloid was used as a physical descriptor, because the physical attributes , almond shaped eyes, facial features etc If you were Mongoloid it was also assumed you were retarded, because Mental Retardation was the term used to describe individuals with low IQs in the s. So much occurred because of lack of understanding.

The chromosome disorder was not officially uncovered by the medical community until When Chuck was born there was not a clear understanding of this recently uncovered syndrome. Chuck, Jonathon and Jamee are so representative of the disability movement in the United States. The sixties were thought of as the parent involvement era of disability in the US. Special education laws were not even written when Chuck first started school.

Most kids with Down syndrome were in institutions or living at home doing nothing. I do not even know if they were sure of what he was capable of, just that he could do things and they wanted him to have schooling or training.. As parents they did whatever was necessary for their son. Jonathon was sent from the hospital after being born to die in the comfort of his home.

He did not die and began to thrive. His parents knew he deserved more and did whatever was necessary to get medical, therapeutic and educational support. Jamee was supposedly fine when she was born, but her mom especially saw she was behind developmentally and had terrible issues with eating issues and painful reflux. I was so struck by the spirit of the four mothers, their compassion, advocacy, common sense.

I feel so fortunate and blessed really to be the one who wove the connections together and am able to share their stories. I loved the story you told about driving through your old neighborhood and seeing the tree. I went past my old house and they removed the most beautiful Blue Spruce that I planted as a 16 year old.

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I was shocked and almost hurt. Who rips up a tree that beautiful? Jackie liked to play Barbies with me and my friends. Nothing made sense and I and started to tremble. A big gulp sound came from somewhere and I started to sob as I ran back towards my house. Running towards home it seemed like the gate to my yard was miles away.

With tears blinding my eyes and dragging my Barbie cases, I finally reached my yard. I dramatically threw the cases on the ground. I heard the girls laughing at me in the background. I ran faster through the yard and into the house. By now, I was crying loudly. My voice was bellowing through the house. At this point, I was crying hard and loud, bent over and sobbing with tears pouring down my face.

My mom ushered me out of the kitchen and kept saying: She told me Jackie was slow and that is why she lived with us and never got married. She did not say Retarded, she did not say Mongoloid. She really did not give me an explanation I could understand. I stamped up the stairs to my bedroom and plopped on the bed, continuing to cry and talk to myself. I had only wanted to play pretend that day.

I did not want to hear bad things about my Aunt Jackie. I loved my Aunt Jackie. I pictured the event in my head and thought about who was sitting at the table. My friends Laura and Debbie were not there. Maybe I will go and play with them. I will never let the twins play with my Barbies again. I felt confused, sad and angry all at once. As a seven year old whose world was turned upside down, I guess I was entitled to be a bit dramatic.

On the inside, my fairytale world would never be the same. My innocence was taken away that day on so many levels. What is wrong with my Aunt Jackie? I kept those questions to myself, not asking them out loud to anyone.