A Sister Shares Why Her Brother with Down Syndrome Isn’t “Cute”

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  Kristin

  September 18, 2016 12:22 pm

  What an amazing blog and a wonderful sister who loves her brother so much.

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  WH

  September 27, 2016 7:02 pm

  Very well-written. I have a sister with Down Syndrome and can very much relate. I’ll be sharing this, thank you!

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  Bill Heidler

  September 27, 2016 7:35 pm

  My younger brother has Down Syndrome and cannot speak in public. At this point in his life (59 years old) he has difficulty carrying on a conversation with anyone. Of course he can’t do it at all when he is intubated, which he has been a few times over the past two years.
  I don’t think I would describe him as a badass, although he has several times recovered from cases of pneumonia that likely would have killed many other people. He weaned off a feeding tube once, and hopefully will again. He has been doing walking therapy sporadically in the two years since his hip fractures, he has gotten up to walking a hundred feet (aided with a walker and spotted with a gait belt and wheelchair). I think that if he had gotten more consistent physical therapy he could do this length walk more regularly at this point.
  He is not really cute anymore. Although his hair has hardly gone gray at all (unlike mine, I am only three years older), and his skin is not much blemished except for the severe decubitus ulcer on his sacrum.
  Sometimes his demeanor is very gentle and loving. Other times he is prone to hour-plus-long fits of yelling, and has occasionally thrown things, struck people (including me), and spit on caregivers. He was medicated with Ativan for this, then most likely over-medicated, then essentially kicked out of the skilled nursing facility where he had been for over a year, recovering from the hip fractures.
  I don’t know if my parents, and I, and his teachers could have done a better job developing his abilities. When he was born in 1957, our parents certainly were “anxious parents who did not know how to adapt to having a child with special needs”. In fact that is a tremendous understatement I am sure. We lived in a medium-sized town in Ohio; our family did not have the means or opportunity to choose to live in a locality that might best serve my brother’s needs. My mother became extremely active in the local and county developmental disabilities organizations.
  My brother completed a course of “segregated” special education, and did not end up having the capability to do remunerated work. He moved into his first group home around age 25. He gradually lost bowel continence around age 52. He was fully ambulatory and otherwise in pretty good health until the hip fractures.
  I am now the only care coordinator for our mother (severe dementia), father (progressive geriatric issues), and my brother. It requires constant vigilance, as probably 50% or more of their hired or assigned direct caregivers do not look out for their interests, one way or another. Several facilities have refused altogether to treat my brother. The decubitus ulcers are obviously due to neglect, even though he seemed happy at the residential facility, was attending a day program, and had a home health nurse and physical therapist visiting him while the sores were developing.
  I have learned a few things over the past year. One is that emotion is the most basic aspect of human life. Our mother cannot talk coherently and most likely can’t think logically at this point in her life, but she can still look at me with love and trust in her eyes. My brother does not seem to remember many of the songs we used to sing, or the phrases we used to exchange, and likely doesn’t remember many of the things we did together; but he still tells other caregivers my name and is happy to see me come visit, if he can muster any happiness at all at that point in time.
  We all live in California now, within a few miles of each other. I wish they had come out sooner, to enjoy the life out here. Realistically they have come out here to die. Having this much time of our family being together at this point is important to all of us.
  We are not famous or rich or exceptional. I don’t know if we “typify” a family with a child with developmental disabilities, but that is what we are. There are things we should have done better and there are things that our society could do better. But we have been blessed with may fine opportunities in life that we might not have had in other eras or in other societies. And we still have what we have always had, a loving family together.

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