Sage

(DISCLAIMER - I hereby state that, in making this post, I don't mean to offend anyone or make anyone feel like I don't respect their personal point of view. I am stating MY OPNION on this matter, and I fully respect everyone else's right to have an opnion different from mine)

As some of you may or may not know, I recently started a job as a Home Healthcare Aide. I got this job through my chiropractor, who has a daughter who is "Special Needs." She has a rare condition that, among other things, caused parts of her brain to not develop. She literally has empty places in her skull where brain should be. Along with the brain problems, one of her eyes is smaller and weaker than the other, and her right side is generally weaker than her left. She just turned two. Her parents are doing a very intense "thearapy" on her through The Institutes for the Advancement of Human Potential (http://www.iahp.org/), and have been for the past eight months or so. Her mother, S, has her entire life and existence wrapped up in doing this program with A, the little girl. Literally, S spends every single waking moment thinking about A, talking about A, being with A, doing the program with A, etc etc etc. Mr. S is also involved in the rehab, but he works as a teacher and as a chiropractor, so during the weekdays there's a helper who comes six hours a day to work with S.

Having come up against this situation, where there's someone who is putting her entire life aside for the sake of her child, I have done a lot of thinking. I do not believe in trying to turn a child that is not "normal" nor will ever be "normal" into something that is as close to "normal" as their physical bodies will allow. And I definitely don't believe the "To me, my child is 'normal' because s/he is the only child I have" line. I'm sorry, you know what is normal for a human being- having gaps where brain should be is not normal. Having seizures up to fifteen times a day is not normal. Being two years old and not able to crawl is not normal. Therefore, I find the trying to make the child "better" to be a selfish action, because it is trying to take something that is broken and cannot be fixed and make it into something as close to yourself as possible. Trying to "fix" your child at the sake of your own life is selfish, not selfless- you're neglecting the wonders of your own life, a life that was given a perfect body to be lived in, for the sake of your child, who will never ever be normal. I feel that throwing one's life away for the sake of their broken child is foolish, as you should live your life first and foremost in order to care for your child the best you can. Perhaps they'll never get past the drooling stage if you focus on yourself instead of them, but you will be a whole and complete person, making the most of your life. S mothers A constantly, calling out to her when she's even in the other room, and is ALWAYS with her, at the sake of her husband, her own personal life, her own mental well-being, and her own self. She sees it as a noble endeavor, I see it as useless.

This mindset comes from my belief in how we are before we have bodies. I do not believe that every body is special- the spirit inside the body is special, but the body is just the thing that transports the spirit around. If I was going to be born with a broken body, I would rather hit the reboot button and try again than live my life trapped in an existence that I could not live to the fullest. If Martel and I were to get pregnant and found out our child was "devlopmentally disabled," we would have an abortion and try again. I would not feel remorseful for "what might have been" because I would know that the body was just the vessel, and the spirit (what mattered) was still living in the "ethers" and could be given another body, a perfect body, when the time was right.

I would also like to add, for the record, that I am NOT IN ANY WAY saying I think we should euthanize everyone with a developmental disability.

Perhaps this makes sense to you, perhaps not. Maybe you're angry at me for even thinking such things, maybe you agree. I've been thinking about this a lot, and want to share my perspective with you in the hopes of gathering more perspectives, perhaps even from people who have friends and family members who were given little hope of devloping normally and who exceeded expectations. I want to expand my point of view, and talk about this, because it bugs me to see someone I am friends with take on what is, to me, a wholly fruitless endeavor day after day after day.

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Ustwo

While we have never had to make the choice to say for sure at this point, this type of thing is where both my wife and I would favor an abortion. My justification has no spiritual component, but more of a eugenics aspect. Its cold and clinical but sometimes being cold and clinical is best.

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Willravel

I love my daughter more than I could possibly communicate. If she had come out with a mental or physical deficency, I would love her just the same. She is a mericle.

The idea that deficient people should not be allowed to live is not a new one. I remember learning in school how some of the greatest thinkers of Ancient Greece thought that mentally disabled children should not be alowed to live. While this makes perfect sense from a biological standpoint, general social morality is too serious to overlook. If you were to see an old woman being attacked, would you come to her aid? Of course. Despite the fact that she is old and may not have biological significance, she is a human being and deserves better.

Sweetpea

well, i'm a respite care provider myself. I know Exactly what you're talking about.
I've seen this situation and i work with a family who is in this situation right now and have for the past two years.

I see where you are coming from to some extent.

People love their children. They act out of love. Acting out of love is the essence of life.

I don't see it as useless myself. However, i do think that familes with children like this should focus on having a better support system in place. Getting breaks is important.
I just think that the woman you describe should have a better support system in place so that she can enjoy some self care for herself.
I also want to point out Sage, that in what you describe above.. potentially, this woman's whole self-image is wrapped up in how she takes care of her child.. hence, there is an emotional pay off when she feels she's doing a good job in her caretaking.

As far as being born into a 'broken' body, i'm not sure what you mean by that to some extent... i think that's a subjective thing and runs on a continum, each person would define that statement differently... for instance... I have serious health issues... and my parents might have aborted me if they had known during their pregnancy.. BUT........ i'm glad they didn't...

In short.. if this woman you describe who's giving her life to her child doesn't see it as "useless" then it's actually not.

sweetpea

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Sage

Good points all. I edited my original post to include that I am NOT talking about "weeding out" those different from us, just talking about my own personal opnion.

I've been reading about The Institutes' approach to rehabilitation, and apparently there's some serious backlash to their techniques, one of which even being that the parents are sucked into a "false sense of hope" at the expense of their well being.
Wikipedia Article on IAHP
QuackWatch article on IAHP

I also would not include my original opnion to include children with health problems. I am only thinking about children with mental retardation on a moderate to severe level.

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Sweetpea

"false sense of hope" is a terrible thing to get sucked into i must admit. And i've seen families who have been pulled into this way of thinking by well meaning professionals.

thank you for clarifying your original post, I think I still feel that children with mental retardation still have something to offer the world. They may not be able to contribute to society in the traditional sense... but they still have something to offer to society.

sweetpea

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mrklixx

Wow.

First off, I can't imagine why anyone who has a problem with "broken people" would want to be a home healthcare aid.

So would you blend them if they were anything short of perfect, say missing an arm or a leg? Or where exactly would you draw the line? And say baby #1 doesn't make the grade and ends up on the cutting room floor, and then something's not right with baby#2 as well, do you just keep going back to Dr. Roto until you get a "perfect" one?

And say Jr. comes out as Gatticaesque and shiny as possible, but then "breaks" later on. What then? Perhaps a bit of Drain-o in the formula or some rat poison crushed up in the PB&J?

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mrklixx

Oops, posted before seeing the "revised edition".

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Bryndian_Dhai

I don't think she's talking about a child with Down's Syndrome, or one with physical disabilities. She's talking about a child who, through some fault of its genetics, is defective in ways that affect its ability to grow, think, ration, interact, communicate or function in any way that would add to the quality of life. The baby in this example is missing vital parts of its brain, or did you miss that part?

This is a perfect example of a healthcare worker deeply moved by the plight of a child who will never develop in any way beyond the most primal, basic unconscious ways... Breathing and blinking are not thinking processes, they are instinctual, involuntary bodily functions that have nothing to do with whether or not the person doing the breathing and blinking is actually alive in any way that makes sense.

I think its pretty clear what my vote was, though I'm not sure I should have voted... I'm a pretty avowed childfree woman, and the odds of me winning the lottery are better than me getting pregnant, so I'll never be faced with this choice.

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martinguerre

tricky. all around tricky.

one thing that i almost hate to point out is the parents who "want a little baby forever" and are the types that really feed on the helplessness and the attention.

co-dependancy situations i've seen have pretty well tarnished the vision of the "selfless parent who gives up everything for their special child" even if such a bird really does exist.

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little_tippler

Ok, so PC considerations aside and worrying about what others would think of me, if I was in the position of being pregnant and found out my baby was going to be disabled, and I was still in the first 2 months of pregnancy -

I would feel very divided about what to do. But I think I'd probably be selfish and have an abortion. I don't feel capable of coping with that situation. I'd feel horrible and would probably remember my decision for all my life...but I still think that my decision would be to abort. Life is already quite hard as it is... So think what you want - call me selfish, I know that I can be. I'm just being honest. I'm sorry if anyone is offended.

My decision would probably be different if the pregnancy was further along.

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raeanna74

To know for sure if that fetus will end up being moderately to severely deficient while in vetro is highly unlikely. Even the best medical tests have a margin of error or cannot be totally foolproof. It's rare but some people who believe they are having a girl may end up with a boy. So are you going to take that chance that you are aborting a reasonably healthy fetus or only mildly retarded one?

My calling in life is to work with children and I would enjoy working with a moderately to severely retarded child. I have worked with some already. It would be difficult being primary caregiver and for the CHILD'S benefit it would behoove me to find a secondary caregiver who was no in my family. It would expose the child to other people (social exposure) and it would allow me personal time so that I was at my best to care for them at other times.

I have a healthy child and it's GOOD for me and my child to put them in someone elses care periodically. She is then able to grow in other directions than what I would tend to bring out. I am able to renew, grow, and refresh. It's not healthy to be with one person, whether you are caring for them or not, 100% of the time.

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snowy

As someone who's worked extensively with children with disabilities, I must say there is a HUGE range of disability to be thought of. Would I abort my child because of Downs? Probably not. Would I abort my child if it were likely they were to be a vegetable their entire lives? Probably, but then you're talking to someone who has a living will and doesn't believe in life support. On either end, by either choosing to abort or choosing to assist the child in its survival (in a way above and beyond what is normally needed), we are messing with nature. Before the advent of modern medicine, these children would not have survived. Similarly, before modern medicine, we wouldn't have known of the problems early in the pregnancy. It's an odd bind we place ourselves in.

Even then, disabilities crop up that cannot be dealt with through abortion: disability due to traumatic accident, cerebral palsy, etc.

We play the hand we're dealt--and there is no saying what cards we'll get.

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JustJess

YES, that is my feeling on things. If I can tell in the early pregnancy that they are so messed up that they will never develop beyond a 2 year old, or they'll be in pain their whole lives, or something like that - then yes, I would abort. But if it's Down's, or CP, or something manageable, then no, I wouldn't.

Sage - I really like your thought of the body as simply a vessel. I think I'll steal that.

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meembo

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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Sage

After reading the two websites about the program that S is doing with A, I feel even more annoyed at the legnths she is going to with her child.

I understand that a mother and father want the best for their children, and I understand that some of you feel that I'm being a bit harsh in my opnion. I do NOT think it is fruitless to raise a child with Downs, or ADD, or some other mental retardation. I'm not even trying to say it's fruitless to raise A and she should just be raised as a vegetable- it's her parent's choice how to raise her.

HOWEVER, my main beef is with the program itself. Read the Wiki article and the Quackwatch report on this technique- how the program blames the parents if the child isn't making progress, how there's no scientific data on the effectiveness of the program in the long term, and how draining it is finacially and emotionally on the parents following this program. It's hard for me to see S so feverently caught up in this program, spouting what it says, it's jargon and buzzwords, like they were the Gosples. I feel like she needed something to give her hope that her child would be normal, and so she grabbed at this program like a drowning woman at a life preserver. But I see it affecting her so much, taking up every single second of her day, and I get angry that there's ANYONE in this world who demands so much of a parent when the results just aren't proven.

A is missing parts of her brain- her brain doesn't even have folds like a normal person's. There are some things that she CAN do, like track things with her eyes, and S even says she repeats words sometimes when they're doing word comprehension. But she doesn't cry, doesn't babble, can't hold her head up, has seizures at least five times a day (even with meds), can't crawl.... honestly I'm not convinced that she's "there." To me, S's blind dedication to this program seems a way of not accepting the fact that her daughter is not whole and will never be whole. That's what sparked my thinking about "devlopmentally disabled" children and led me to reach my own conclusions about what I would do if I knew my child was going to be born with half a brain.

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maleficent

About 18 years ago, a friend and his wife gave birth to a child who was developmentally diabled - this poor child has more problems that Carter's has liver pills... The doctors and the family all suggested that this child be institutionalized because she'd never learn to walk, or communicate, or feed herself or anything... Both parents were not exactly what you'd call over achievers in their lives - -nice people, but liked having fun more than work...

The parents made a decision to get their act together and be good parents... Katie, at 18, is not a 'normal' child, but she walks on her own, she talks, she feeds herself, she does all the things that the 'experts' said she'd never be able to do, because the parents had incredible amounts of love and patience with this child.

I had a colleague a few years ago, who's sister and husband gave birth to a child.. The child was born with Down's Syndrome... The parents were so devastated at not having a 'normal' child, that they gave it up for adoption in the hospital... (luckily there was a family who wanted this child immediately and the baby didn't stay in the hospital)

The parents, in your case, might be fooling themselves that she might have a normal life, but honestly, you don't know unless you try... I think when you make the decision to have a child... you play the hand you are dealt... and do your best with the situation..

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rhaevyn

I would not have an abortion if I was told, while pregnant, that my baby would be disabled, either mentally or physically.

My niece, Gabrielle, has Wolf-Hirschhorn Syndrome, which is a partial deletion of the fourth chromosome. My brother and his wife were told about this about 3-4 months before the due date, and while they prepared as much as possible for whatever could happen--by studying the disorder, talking to doctors, etc--it was difficult because WHS is such a rare disorder that there isn't much information available.

The thing is, there are different ranges of disability with WHS. Physical and mental development can be severely delayed, or only mildly delayed, or anywhere in between. The child could live for fifty years, or it could die within a few days. (On that note, I want to add that we celebrated Gabrielle's first birthday a couple weeks ago )You can't know how disabled your baby will be until well after he or she is born.

That would be my main problem with aborting a disabled baby. You might be expecting severe retardation and decide to have an abortion, but what about the chance (and often a very big chance) that the child might come out with only a clubbed foot, or deafness, or something.

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ASU2003

I'm not a huge fan of abortion, but I think it would be ok in this case. I am a fan of Darwin, and believe in the survival of the fittest.

On the other hand, it is very selfish, but I wouldn't want my life changed by that much.

Grasshopper Green

My boss at a previous job worked a second job at a "home" for kids who's parents didn't want them. All the children were severely developmentally disabled and physically disabled. I remember when one of the kids died, my boss was devastated. She loved those kids like they were her own, and each one brought her joy. I couldn't help but think of her when I read this post.

I don't think I would abort a child unless I knew for certain the child had a fatal disease, such as Tay Sachs. I can see the point of view of people who would, but for me personally, that is the wrong choice.

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raeanna74

One more thing to consider is that children with severe disabilities don't often live as long as a normal adult. It's not uncommon for them to die in childhood. So in that case natural selection does occur. I don't see that we should rush it or even unreasonably prolong the process through multiple artificial means. If this little girl (the one mentioned at the beginning of the thread) is having multiple siezures every day it is only going to get worse. Every time a person has a siezure it increases the likelyhood of another one. She is not going to survive a long time unless there is some miraculous intervention.

The mother caring for this girl is probably devoting a little too much of her own time and needs assistance and support from outside her family. But that is a choice she's made and not a choice that other people would make. It's not a cause of her child's disability but a move that the mother made on her own part. What I'm trying to say is, don't blame the child or child's disability for trapping her mother. Her mother trapped herself. It isn't healthy for the mother and when the child does pass away the mother is going to be devastated more than any normal parent.

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frogza

There is such a wide spectrum of disabilites that a baby can be born with, I don't think that it is possible to say what I would do 100% of the time. What approach would I take? I can't say, I'll let you know if/when I find myself in such a situation.

lurkette

This is a tough one for me. My family carries an x-linked recessive disorder (hypohidrotic ectodermal dysplasia -HED - basically no sweat glands and a host of related complications) that manifestss in the half the boys; half the girls will be carriers. My brother had it, and I'm 90% sure I'm a carrier. My brother had such a hard life. Even though he was dyslexic (not sure if that is related to the disorder or not - my cousin who has it is also learning disabled) he was incredibly bright - genius, even. But he looked odd and had so many health problems he couldn't participate in many normal childhood activities, and was ostracized for that. It really got to him, and I don't know that I would wish that on anyone. On the other hand, he was a deeply special person and I don't regret his life. Now that he's gone (got hit by a car almost 3 years ago) I can't ask him how he feels about things, but in our decision whether to have kids or not, this is certainly an issue for ratbastid and me. On one hand, I wouldn't want my brother to think I wouldn't want a kid like him. On the other hand, I don't know if HE would wish this kind of life on anyone. The illness, the difference, all that. Part of me thinks that there's something to be learned from every experience, and I shouldn't shrink away from this one just because it is hard, or not what I expected or hoped for.

That said, if I found out I was going to have a child who was going to be so disabled as to never be really functional, I think I would have an abortion. If you're missing parts of your brain or are so dysfunctional as to be essentially trapped without human consciousness in a meat puppet until it gives out on you, it seems to me it would be less cruel to simply stop it before it starts. I think it would take something more than the possibility of a life of inconvenience to lead me to that choice; it would take really being "stuck" with a non-human human who shouldn't even be here. I know that's a fuzzy line made fuzzier by modern medicine, but just because a body breathes and swallows doesn't mean it's alive or conscious.

The other thing I have to say is that this is such an intensely personal choice, I can't imagine judging someone for choosing differently than I would. I know parents who have raised autistic children with such love and grace and gratitude; I know people with CF kids who have died and are endlessly bitter about it. I know people with mentally retarded children who find joy in them, and people with perfectly normal children who break their hearts on a daily basis. Everyone has different abilities and thresholds for love and compassion. I can't fault someone if their hope makes them so blind as to lavish love on someone who can't receive it the way I think they should.

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amonkie

As a side note to Reanna's comment on age - their bodies age 10-15 years faster than a "normal" person's body. The home that I worked at previously had people ranging in age from 40-82 years old - add the 10-15 years and these were some pretty old folks.

I have seen this play out, from the pediatric level and involved families to the geriatric and the family who wishes to have no part in the special individual's life. I can't make the judgement call for someone else ... and I have not had to make such a decision myself. However, my ultimate goal is to help increase the quality of life as much as possible.

My gauge factor is this: I had spinal mengitis as a baby, and was in the hospital for six months. About half way through this period, my parents were told that I would never completely recover, and that if I did, I would persist in a vegatative state, based on my body functions at that time. They could have chosen to cease and just let me slip away .... but 21 years later not only am I NOT in a vegetative state, and though i've got some issues because of all the brain damage ... I am by normal standards an interactive person within our society.

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ScottKuma

I *have* a potentially developmentally-disabled child, and I've thought a LOT about this question in the past nine months.

I guess I can understand those who would wish to abort - it takes a STRONG person to raise these children...and quite frankly, not everyone is up to it! My wife is wavering from one side of that strength line to the other. Some days she's up to the challenge, some days she's not.

But I know my little one is going to bring us a LOT of joy. Aborting him would have never allowed that joy to flourish.

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xepherys

I'm on the fence regarding this issue completely. I know ScottKuma in RL and have been very impressed with his ability to wade through many of the battles he has to deal with (time, insurance, family). However, I think that I could never decide how I'd make this call without actually being presented with the situation. Maybe it's cowardly, but I simply can't picture how I'd react.

Gilda

This one is very difficult for me. It's strictly a hypothetical, as I can't have children, but my wife will be in the foreseeable future, so it's something we have to consider as a couple.

On the one hand, there's the slippery-slope argument. If we're going to start aborting fetusus because they're going to be severely developmentally disabled, do we then start moving the line? Does it then become easier to abort a child with Down's syndrome? Or dwarfism? Or maybe we can abort children who are likely to have other undesirable traits, such as homosexuality or transsexuality? Or perhaps just aborting a child who isn't the sex you'd prefer, as is happening in India currently with some women aborting female fetuses?

Do I think it's going to come to that? Of course not, at least not on a large scale. I do have to think that, given their current attitudes towards alternate sexualities, my parents likely would have aborted me and Sissy had they known how we'd turn out, and the world would have lost a pretty good English teacher (not a big loss) and someone who someday is going to save a lot of lives.

So it's not as if I haven't considered the ramifications of aborting fetuses for having undesirable characteristics.

At the same time, I find slippery-slope arguments to be very problematic if there isn't a causal link that can be shown between point A and points B, C, and D.

If we found out that Grace were pregnant with a child like the one in the OP, I think I'd probably want to abort and try again. This wouldn't be a child who would be able to have any quality of life as we know it, and *might* detract from our quality of life. Becoming a parent is, at least in part, a choice made because it is believed that having children will be a positive influence on our lives.

As for the spirit part, I can see it from both an existential point of view and from an essentialist point of view. Existentially, if this is the only existence this person will ever have, does it make sense to bring him/her into a world where he/she will never be able to enjoy life the way we know that to be? If, as I believe, we posess and essense separate from our physical bodies, are we doing the child a favor by trapping that essense in a damaged vessel? I don't know the answers there for sure, but I think that my personal answer in both cases would be no.

I'll have to reluctantly say I'd abort, but I surely wouldn't be happy with that decision.

Gilda