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I managed three assisted-living homes for older kids with moderate to severe developmental disabilities in the 90s. I started as a regular shift worker for 2nd shift. I enjoyed the work and got the certifications I needed to manage the homes. All of these kids had been previously institutionalized in state facilities, but the care there was inadequate and very often brutal, even sadistic. Sadly, people often looked at these kids as less than human, and treated them that way. All of the kids arrived at their new homes about the same time, moving from the state facilities as they closed. I worked with those 16 people for 7 years, until my children needed full-time, stay-at-home care themselves.
I don't know sage, but I hear no parental love in her words. (This is not meant as a slight in any way.) I'm guessing sage has no children herself. Holding your own child in your arms for the first time, for most parents, is a watershed moment, one that divides your life into a permanent before and after. It may be instinctual, it may be spiritual, but most parents become willing and able to sacrifice their life for the child in their arms. That was true for me.
I don't know if the parents of the children I cared for ever had the chance to consider an abortion. I certainly never asked. I was usually in awe of these parents, and their patience, and their stamina. They all saw their children as beautiful, even when flawed. They might have chosen not to have their children had they known of the flaw in utero, but once they arrived they re-oriented their lives out of love and responsibility. I am still in awe of the selflessness and respect and dignity that requires.
The work and the care of the mother sage speaks of isn't "useless". That's harsh and judgmental. It clearly is meaningful to the mother. As it happens, my older son has a developmental disability that didn't show up until he was two. Now (after intensive therapy when he was younger) he is developmentally caught up with other kids his age, though difficulties remain. For years he had 7 visits a week to speech therapists and occupational therapists to learn to walk and talk, and there were countless hours of therapy at home, and I put my life on hold to get it done. It was a labor of love, and I never considered it to be an unfair burden. However, I believe that his condition was the first domino that fell in the collapse of my marriage. That's incredibly sad to me, but none of my efforts to help him were useless, and I'm certain there there were no alternatives to what I chose to do. My wife had problems dealing with this son's disability, and the wedge just grew wider and wider for years.
As sweetpea says, support and respite are necessary. No parent is superhuman, and everyone needs help. I saw many of the mothers of the kids I worked for consumed with guilt about their child's condition, even though there was no evidence that the mother's behavior or lifestyle had anything to do with their child's disability. My company also had respite care services, but I always wished the parents of the kids had counseling themselves. I believe many of them needed it.
All that being said, if I knew that my child in utero was severely handicapped, my first reaction would be to abort the pregnancy and begin again. I believe that people are entitled to make quality of life decisions, and this applies to would-be parents as well. Sometimes these decisions end life. My children's mother and I talked about this extensively, and we agreed on this beforehand. My brother and his wife faced this decision themselves last year during their 4th pregnancy, and they chose to end their pregnancy and start again (she's due in June).
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less I say, smarter I am
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