nbcrusader said:
Underlying you question is the assumption that we have a right to relatively defect-free children.
No. The purpose of my question is to encourage people to think about what they would do or be able to handle (emotionally, physically, even financially) if they were faced with caring for a severely disabled child. Plus I will admit to a bit of a "put your money where your mouth is" attitude also, and I wanted to know what people actually do if they were faced with the prospect of caring for someone with major disabilities.
Of the people I've ask these questions in person, very, very few have ever even given it a passing thought. The vast majority never consider that the child (or children) they are going to have will be anything other that completely "defect-free."
That view has always surprised me as my family (immediate, aunts, uncles, and cousins) has many members with birth defects including relatively minor problems such as chronic crossed eyes, to severe heart malformations (several members, luckily correctable), to several cases of mental retardation ranging from moderate to profound.
Partially because of what I consider to be a higher than normal possibility of birth defects in my family history, I chose not to have childern. Another reason is that I already have a three-year-old...and have for more than half my life (she's been with me 22 years now -- since her mom died). She is my aunt and is now chronologically 55. She's not particularly difficult to take care of (personal hygiene is completely up to me), but she needs supervision 24/7/365. Now my mom also lived with me and was able to provide supervision (and until several years ago, share in the care of my aunt)...my mom was also disabled (a more progressive condition -- heart failure, intensified by my birth -- whoa! talk about a guilt trip!), so I also helped her (she died in April). There are pretty much no other relatives here, and it is a rural area.
For many years my aunt went to a sheltered workshop, but various negligence/possible abuse issues. She was choked by another client while the aide supposedly watching her - the other girl - was sitting right beside her!, and she broke both legs - in seperate incidents - requiring hospitalization, surgery (both times requiring several plates, screws, and rods), and long rehab periods. Plus the very last straw was a possible sexual abuse incident (but my aunt won't communicate, so it's nearly impossible to prove). So the sheltered workshop is out.
Respite care -- don't make me laugh. We qualify, we can get it paid for...but no one will recommend anyone (and they have to meet certain standards, so if I can find someone will to sit with my aunt that I am comfortable with, I can't get it paid for, because they don't meet the standards). Remember, these are the same people who run the sheltered workshop. I will say there are a couple of people that I trust who will watch my aunt if I really need an occasional time out, but the most reliable of these is a woman who is caring for her husband who is in the later stages of Alzheimer's disease, so that is not really a viable option.
Although many severely disabled infants don't live into adulthood, many do...and can very well out live their parents by decades. It's not just a matter of getting them to college, it's more akin to caring for an infant/toddler for the rest of your life (and trying to make sure the child is cared for after you are dead).
Oh...someone mentioned earlier that thay had never seen an unhappy or angry downs syndrome child...well, I have, and I'll tell you it isn't pretty!