The Down’s Spectrum, Ctd

A reader elaborates on the themes broached by the earlier one:

I have seen things like that video promoting the upside of a child with Down Syndrome before, but a mildly affected child isn’t the reality for most parents. Between 3 to 12% of children with Down’s are profoundly mentally handicapped and unable to do much without assistance. Another 25% are severely afflicted and 55% are moderately so. Only about 13% are mildly impaired, and they are the ones who have the best shot at some degree of independence as adults. But people with Down’s are never truly independent, and by middle age evidence of memory loss and reduced cognitive function begins to set in as they are prone to early Alzheimer’s, in addition to other physical issues.

My 62-year-old cousin has Down Syndrome. While he has never been independent, he has been able to live in group homes at different points of his life and has held jobs through various programs for the mentally disabled. But now he has behavior issues and is showing signs of dementia. His older siblings don’t want the responsibility of his care, so my 88-year-old uncle is still his sole caregiver. I know his siblings well enough to know that not one of them will step up should my uncle be unable to care for him anymore, and my uncle, while healthy, isn’t going to live forever.  I wonder what will happen to my cousin.

Going ahead with a pregnancy when you know the baby is going to need life-long care is not just a decision you make for yourself and the child, but it obligates other siblings and family members as well. That’s something that potential parents should take into consideration.

Another shares some raw honesty:

I’ve been reading your thread on Down Syndrome with interest. My 17-year old son does not have Down’s, but he does have multiple disabilities including developmental delay, cerebral palsy and visual impairments, due to complications at birth. He is a happy, joyful young man and my husband and I love him to bits and have done our best to ensure he has a loving and happy life.

However, it is an exhausting and thankless existence, resulting in no respite, decreased career prospects and pay (due to being only available for part-time work). We fear about our son and our future when we get older. Knowing what I know now about raising a severely disabled child, in my heart of hearts I know if I was given the option today of raising such a child or terminating our pregnancy, I would choose abortion.

Asked for the source of her statistics, the first reader follows up:

This pdf is where I found the percentages. They were not easy to ferret out and maybe you can find better stats somewhere else. Most of the medical stuff I found seemed reluctant to lay out hard numbers and kept things very general. It reminded me of the difficulty of finding information on outcomes for extremely premature infants, which is also not as rosy as it’s generally painted to be. I don’t remember if I mentioned it, but there is now evidence that between 10 and 15% of Down’s children are also autistic, and it’s not particularly hard to find articles listing the numerous health issues of Down’s adults or the fact they seem to age prematurely (which probably is why they experience dementia symptoms at such a young age).

I never spent much time with my cousin as a child. He was a teen and his behavior with girls in particular was … inappropriate. So my siblings I weren’t around him much and usually supervised when we were.

I admire my uncle. He has been a good father. His step-children and his grandchildren adore him. But, according to my mother who recently visited him, his quality of life is suffering a bit now. He has vision issues himself and the stress of dealing with my cousin’s health issues on top of his own takes a toll. He is fortunate to have one step-daughter who helps out, but she is unable to take her brother’s care on completely – mostly because of his behavior issues. An extended network of friends and a girlfriend help him a bit as well, but most of the work falls on him. My cousin is quite set in his routine and is violently opposed to being care for by other than his dad.