Download e-book Roots and Fences: A Generational Story of Friends, Family and Disability

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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.

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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.

Roots and Fences

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?

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I kept those questions to myself, not asking them out loud to anyone. I tucked them in a place deep in my soul, but the questions were always nagging. I would continue to have many inner conversations trying to figure it out. I needed the wisdom and advice of my Aunt Jackie, but I could not ask.

I was specifically told not to say anything to Jackie and the secrets were about her. Does Jackie know she is retarded? She has spent over 30 years as an educator and administrator for students with disabilities in the city and suburbs of Chicago. She currently provides training to many schools and agencies in Illinois and Indiana in the areas of family support, goal writing, and curriculum implementation. Sharon is the founder and director of Abide in Me, a charitable organization that provides assistance to individuals with disabilities for leading engaged lives.

She is the proud mom of three adult children and has three grandchildren. She and Dave, her husband of 35 years, love traveling, their dog Nellie, the Chicago White Sox, and hanging out with family and friends.

Roots and Fences

Browse Amazon for all formats. Searching for the Nook edition? This e-book is on iTunes. Browse Apple for all formats. Sharon Gregory Duncan Ed. 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.

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I know it sounds crazy that we did not see her as disabled, but we did not. She told me Jackie was slow and that is why she lived with us and never got married. I look for places with overall great reviews and try them out. Little things made us happy like watching The Wizard of Oz in color for the first time on our new console TV. Stigma has long been associated with having a child with a disability. What is the most significant change in education from when you started teaching until the present time? Therein lay the synchronicities of life.

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. I was shocked and almost hurt. Who rips up a tree that beautiful? What are your most memorable childhood experiences? It was not perfect. I was a big crybaby and had this bright red hair and freckles so I heard about that from the neighborhood kids. Little things made us happy like watching The Wizard of Oz in color for the first time on our new console TV. We all played together in the neighborhood.

There were at least 30 kids on our two blocks. We played baseball in the prairie an empty lot , ice skated at Oak Lawn Lake.

Everyone stayed out in summer until the street lights went on. We took the bus all the way to Ford City by ourselves at nine years old. The world was safe, all we needed was a dime to use the pay phone in case we needed to call home when we were out and about. I am still friends with Laura and Debbie, so I think there is something to be said about those first relationships formed in the place where your life began.

A friend of mine working with the DSRTF said one of her most powerful influences was seeing how strong the mothers of the Down children were when they walked into Soldier Field early on during the Special Olympics and hardly anyone was there. She said it made her stronger knowing of the changes. They go about their lives doing what they need to do. They do not want accolades or praise.

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They just want what all moms want for their children. They want their child to be happy. These moms must be resilient, strong, scheduled, compassionate and almost always on their guard to get what their children need. Most of the advocacy and inclusive programs were started by mothers.

Tell us about Abide In Me? How did it start? What can people do to assist? Even though I loved being a special educator and I see myself first and foremost a teacher I felt I should do something more; and I did not know what it was. On the occasion of my 25th wedding anniversary, I started a non- profit in Illinois, Abide in Me with the idea I would start a program to help those in need. We have a full board of directors and last year sponsored a fund raiser, 'Celebrate Me Home!

Garden Center Services will manage and own the home. We have worked with families of children with disabilities in the Dominican Republic, donated art supplies at an art gallery for people with disabilities, started a coffee clutch program, donated furniture and materials to special education school groups to name a few of our projects. Our website is abideinme. We have a Facebook page as well. People can email me with ideas or programs to support individuals with disabilities of all ages, which can be presented to our board.

There are also opportunities for specific volunteering opportunities. If you cook, sew, decorate, love music, sports, have a great idea or just like hanging out with people with disabilities we can match you to people who need your support. You are a Professor at Purdue University?

What is the most significant change in education from when you started teaching until the present time? I think the most significant change is in technology. I could not even type when I started teaching. We still had purple ditto masters! With all the technology available now it is very exciting both for me and for the accessibility it provides for people of all ability levels. I also think expectations are higher for all individuals with disabilities.

We now know they can learn and our job as educators is to find the means so everyone can learn.

I love the idea of Universal Design for Learning.