Please let me introduce Arthur. A fraternity brother of my husband that I talked into sharing. I particularly craved his perspective. He is not a parent. He has a sister with Down Syndrome. I always want to hear siblings' perspectives because I want to parent all my children with their needs at the forefront. Thanks so much to Arthur for letting me pick his brain!!
"My 29 year old sister has Down’s Syndrome. She still lives at home with both my parents. Mary Sue is the youngest of 6 kids.
She is 5 years younger than me and do not recall when I first realized she was different. I have a memory of being told that there was an issue with her heart when she was born.There was concern about it requiring surgery but that was it. It probably took several years before I realized the impact on my family and myself.
I never ever saw my parents get into an uncomfortable situation with her. I am sure they had discussions about how to handle my sisters Down’s at first but I never saw them. I can only speak to their actions. My parents have been very supportive of my sister. They paid for special schooling during her early developmental years. They were supportive as she made her way through school and graduated from high school. They wanted her to have as many experiences as she wanted. She played a year of softball and has had a couple of minor jobs. My parents take on every vacation they take. From the outside looking in, my sister’s condition affected me more than them (although this is highly unlikely).
I remember in later years of grade school and through high school being uneasy about the perception of my sister which is totally selfish on my part but a reality. I did not know what people would think. However, I realized that was more my personal issue and could no way compare to what my parents must have thought the day they got that diagnosis.
My sister has always been a fun loving person. She has never done anything hateful in her whole life. Mary Sue is fairly functional. For the most part she manages pretty well. She is ambulatory, able to dress herself, feed herself, and even helps do the vacuuming. Cognitively, she functions fairly low but do not remember at what level. She does not speak as much as she used and has drawn a little more reclusive. She loves to write and usually only speaks in short phrases at the most. My dad lets her sign her own SSI checks now. She definitely goes at her own pace. She may stay in the shower for an hour and take an hour to get dressed. She loves CMT and can listen to it all day. And she does it all with a smile.
Now as a family we are making the family decisions being prepared for who will be next caregivers. My parents have recently done a will, thank God. Also, they recently ran into medical treatment issues because she is over 18. This has not been a problem in the past but one hospital was being difficult and wouldn’t draw her blood. Anyway, we have just done the whole Medical Durable Power of Attorney and how my older brother and I will be next in line to look after her financially and medically. My parents said we all can take part in being caregivers but I think they believe my older brother and I may be the most sane (I guess I fooled them). My sister remains a part of my family’s daily life and is included in all our activities and encouraged to participate. I have gown to have an extra soft spot in my heart for Down’s kids, and I think if anyone is around them long enough they will as well. God touches us in mysterious, challenging, and wonderful ways."