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.

Update from a reader:

When I initially read the words of the reader with the 62-year-old cousin with Down Syndrome whose 88-year-old father still cares for him, I was blind with rage. The view of this reader, supported by his EPA (?!) PDF is extremely antiquated.

But then I looked again at the age of the people in the story. The cousin was born in 1952. The father and mother who raised him did not choose to institutionalize their child, as was the norm at that time. That was very brave. Even so, back then, this child was most certainly not educated with his peers and the technologies did not exist for elevating him to his full potential. As a result, this reader (and many others of a generation too) has formed an impression of who and what Down Syndrome is.

And for the record, “inappropriate behavior with girls” is not a trait of DS. It occurs to me that this family did not have the ability or resources at that time to educate and/or train this child. His dependence today on his father as his sole caregiver is probably another result of inadequate resources and support. However, at that time the only other option was to lock him up. There was no good choice for this father and mother.

That is the bad news.

The good news is that nowadays in our society we educate all of our children. We have the skill and technology to teach EVERYONE, even the mentally disabled. That is why we now have these excellent stories of people with Down Syndrome and other handicaps living happy productive lives in our society. Even better, because of this, we all have the opportunity to interact with people with different abilities. We don’t need to be afraid of them and we don’t need to let the stories of years gone by make us afraid to bring our babies into the world.

I have a 9-year-old son with Down Syndrome. I learned of his disorder before he was born. I was very afraid of the future, mostly because I had never been friends with or interacted with anyone with Down Syndrome. I had always averted my eyes and avoided contact on the very rare occasions in which I encountered someone with DS. I was born in the early ’60s. At that time babies with DS and other disorders were still being institutionalized and they were rarely seen in daily life. I never considered terminating my pregnancy though; I knew my fear was irrational. I wanted a child to raise and a sibling for my older son. I had a family and community around me to support my decision and to be enchanted by my boy.

The reader’s story is a tragic one. But it is not a story of the bad news of Down Syndrome. It is a story of societal exclusion of the mentally disabled. There are similar stories out there of aging people who were institutionalized 50 years ago for what we consider to be manageable behavioral problems today. I have a friend whose 60-year-old cousin was institutionalized at age 5 for eating dirt. He is still there, forgotten by most of his family. I hope that the reader, the cousin, the father and the rest of this family will find comfort and resolution somehow.

Parents to be: Please don’t let this story shadow the outlook for your child. We don’t live in that world any more. Your baby will be as beautiful and lovable as any other, and full of potential. Being a parent will be the ride of your life no matter what the diagnosis is. You can’t predict what it will bring. Nobody can.