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#ChoiceFirst Stories By FSU Members

swanson family

“Andrew’s Reality” By Pat and John Swanson

We are Pat and John Swanson and the proud parents of 27-year-old identical twin boys. Andrew is an individual with autism. His brother, Ben, is neurotypical.

When Andrew was diagnosed at age 2, we embarked on a pathway of extensive therapies to help him meet the same developmental milestones as his brother. Moving through the grief process, we started to accept that Andrew’s life would have limitations and at age 12 made the decision to remove him from an academic track into a functional life skills program. This was an extremely painful decision that made us feel as if we had given up on Andrew. Despite our feelings, we somehow knew that this was best for him. In this environment, Andrew not only flourished and met kids he could finally consider friends, he became a content and happy young boy. It became clear that our choice was in reality ANDREW’S choice and that for us to continue to assist him in making correct choices we had to accept the realities of his disability.

We have parented identical twin boys. Now that they are grown, the least restrictive and most appropriate environment for these two young men is literally worlds apart. Ben lives and works in China and was recently married. We would give all that we own to have Andrew capable of this life. But, we have had to accept his limitations and reality: he will need help for the rest of his life.

Our son’s potential is not known to us but we will never give up on helping him attain it. However, we have to accept that there are things he will never do. We must accept that despite what we want for him, we can no more change his intellectual capabilities than a parent of a paralyzed child can ask that child to get up out of their wheelchair and walk. This is not the way we think out of fear or for ease of our own lives. We are his parents and this is what we know.

The hopes and aspirations of Andrew and other persons with intellectual disabilities mirror their mainstream counterparts. Andrew often asks when he can, ‘go away from home’ like Ben. Without a full menu of choices for success, public policy will limit options for Andrew and others with IDD. Idealism is defined as, ‘the practice of forming or pursuing ideals, especially unrealistically.’ We accepted Andrew’s reality years ago and now public policy must reflect the same acceptance.


Sallys choice

“Sally’s Choice”

By Lillian Sugarman (sister and guardian for Sally Sugarman)

In 1948 my sister Sally was born. I was 8 years old and my older sister was 11. Soon after her birth we were told she had Down Syndrome. This diagnosis in 1948 for most families would have automatically doomed a baby like Sally to a life in an institution. Sally however came home to her loving family. Sadly, when Sally was only 14 months old our father died of cancer. So my mother raised her three girls alone. Sally was a high-spirited person who was also legally blind in one eye.

In 1978 I became the legal guardian for Sally. She lived alone with our ailing mother in Wilmington, Delaware until our mother needed full time residential care and could no longer care for Sally. I worked and lived in Washington DC and our older sister lived with her family in Atlanta, Georgia.

So, as most families do when there is a crisis, we met to consider our choices and a path forward to help both our mother and Sally.

I was referred to the Mary Campbell Center (MCC) in Wilmington by a Social Worker from the Saint Francis hospital. When we visited Sally immediately liked what she saw. Fortunately Sally was accepted first in respite care and shortly thereafter in full time care.

Sally’s life at MCC was actually a re-birth. She had peers for roommates and became involved in activities and experiences that were not afforded to her previously. She blossomed emotionally and socially. She participated in swimming, power lifting, bowling, and bocce both at the center and with Special Olympics. She went to the theater, ball games, Checker Board dances and partied at MCC. She even became a Public Speaker with the 4 H Club. She received top-notch physical care by nursing staff throughout the years and changes in her health status. She experienced exceptional individualized counseling by the casework staff who supported her and found several out of the center work sites for her. She established lifelong relationships and friendships with staff and residents alike.

Although Sally came home with me on many weekends and holidays and we took many trips together, MCC was Sally’s real home and it was HER choice. Sally reaffirmed that whenever asked where she wanted to live. Her residency there allowed all of her family to be at peace knowing that she was loved and cared for 24/7 in a manner that would not have been possible had she not lived at the Mary Campbell Center. Sally resided there until she passed away in 2007 at age 59.

Permanent link to this article: http://www.familiesspeakingup.com/2016/02/02/choicefirst-stories-by-fsu-members/

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