Pillow Angels
Posted by Raven on January 4th, 2007
Articles about Ashley have hit the internet full bloom tonight. It’s a difficult case to think about. It seems their are never any winners in situations like this; while everyone is heckering over the ethics of this stuff, not too many are speaking to how this effects Ashley, medically.
Ashley’s parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth. She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, “stays right where we place her - usually on a pillow”.
Ashley won’t know this, as she is brain-damaged and has the awareness, her doctors say, of a baby, but she has become the subject of a passionate argument in disability circles and beyond. Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.
From all accounts, Ashley is a little girl with what we call severe developmental disability. She isn’t at the profound stage, but close to it. She depends upon others for all her care and basic human needs. She is not on life support, except for the G Tube who some call a form of support.
The cause of the controversy is the “Ashley Treatment” - a course of surgery and hormone supplements devised for her at her parents’ request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.
This is assuming that Ashley would even grow to be a “normal size” woman. Many developmentally disabled children do not. Some grow to be very overweight as well. A lot depends on their abnormalities, metabolic condition and level of activity. It does appear that Ashley has been growing at a fairly normal rate for a child her age so it is safe to assume she would continue to grow.
Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in (1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.
This is neither here nor there…
Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children’s hospital they devised the treatment: removal of Ashley’s uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.
Children with DD’s enter puberty much earlier than other kids. It’s normal for this population. It’s one of the oddities of it all too- developmental delays always mean a slower rate of growth, mental capacity and maturity…yet puberty comes to these children so early. In my work, we have a unit where younger children reside- who have the same dx as Ashley (among dozens of others dx)…it is typical to see ONE of these treatments performed on these little patients. Barbaric as it might seem, it does prevent so many problems these kids tend to experience when they grow older.
The parents insist that the treatment, carried out in 2004, was conceived for Ashley’s benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. “As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long,” they write.
Her parents want to keep their daughter at home with them. They are concerned with Ashley getting too big for them to care for appropriately- I believe this is a legit concern. For many reasons DD children tend to get institutionalized when they turn 12, 13…We often see admissions to my facility on the unit mentioned above- when kids hit the tween years…puberty has happened and a growth spurt has caused a parent to hurt their back or something similar. It ends up costing a lot more (MILLIONS more people) to tend to the needs of a handicapped child in an institution vs. in their home. AND, being in the nursing home type places places these youngsters at higher risk for bed sores, UTI’s, respiratory problems, highly contagious infections (MRSA, VRE, C DIFF). Institutional care should be a very last resort for care- because it is the most restrictive environment anyone can live in.
But as news about the treatment became known, Ashley’s parents were surprised by the virulence of some of the response. Comments on chatboards have included: “Ouch - this smacks of eugenics”; “I find this offensive, truly a milestone in our convenience society”; “This smells, I can’t agree with this”.
Yes…I am thinking the same things. BUT, I can’t help but think of the other “accepted” surgeries and treatments that are commonly performed on children with these issues- many of which fall under the guise of medical need, BUT are really about making it easier for people to care for them:
Spinal fusions, hip surgeries (where hips are broken and casted in hopes to align them better); muscles between lower and upper legs are “snipped” so legs bend- same with arms; bladders and intestines are removed and shortened to prevent incontinence and vomiting -which are important for the child, yes, but convenient for the staff as well…there are so many treatments and surgeries I can’t list them all.
Outrage has also been expressed by organisations representing disabled people across the US, with many asking why a course of treatment that would not be countenanced for an able-bodied person should be allowed in this case. “People have been horrified by the discrepancy,” said Mary Johnson, editor of Ragged Edge, an online magazine for disability activists.
I’m not sure what the outrage is truly all about here. Most disability activists I know fight to keep their friends at home, they fight the institutional model of care and all the inhumanity that brings.
She said she felt for Ashley’s parents and could understand why they had made the decision. But she feared that the treatment would open a Pandora’s box that could have adverse effects for other children. “What will now be said in the case of a child with spina bifida, who you could argue has the same physical challenges but whose brain is fully functioning? This is very troubling.”
Perhaps. Each developmental disability comes with it’s own set of unique problems and time tested treatments- which most often make lives very worth living. Children with spina bifida experience more surgeries and treatments than all other dx combined…all designed to improve the quality of their lives. No one has complained about this.
Debate has raged among doctors and medical ethicists. Jeffrey Brosco of Miami University has co-written an editorial in the Archives of Pediatrics & Adolescent Medicine criticising the procedure as an experiment without proper research controls. “This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families, but what we need most is better federal funding so that they can be cared for properly.”
An experiment? Every surgical procedure is an experiment and this doctor is being disingenuous. None of these “procedures”, these surgeries and treatments, are new. They have all passed the tests of safe and sound medical practices. His concerns are valid, but not his excuses here. And his answer to it all: More federal funding. It’s not the answer here…to claim this does nothing for Ashley- because in order for her to receive federal “funds” she would more than likely have to move into a nursing home. Proper care is a subjective statement and this reeks of elitism. Many doctors, even those who work with this population, feel that institutions are the only places these children belong at. They believe proper care cannot happen within the home setting. It’s not true.
The ethical row is likely to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment, though only after monitoring by the hospital’s ethics committee. The doctors accept that Ashley’s hysterectomy was contentious, given the dark history of sterilisation of disabled people in Europe and America, and that there were risks involved in the operations and oestrogen doses.
They could have used the many varieties of birth control to achieve the same results here. Many parents of disabled girls have them on patches and pills to prevent menses and it’s associated aches and pains. As for other children who might benefit from these procedures- this is how medicine works folks. Treatments, surgeries are performed and the kids are followed through their lives to see how it all worked out for them. These doctors didn’t do this in a vacuum.
But they argue the benefits outweigh the risks. Ashley has, they admit, been “infantilised” but question the harm that would do a person whose mental capacity “will always be that of a young child”.
Harm comes in many forms…medical people tend to overlook the harm they produce when they assume the cognitive abilities of these patients is lower than it really is. Ashley has brain damage, but she is not brain dead. Ashley is aware of her surroundings and environment. These kids DO have personality, they have the ability to laugh, to cry, to be serious, to be relaxed; they have feelings and they certainly know when they don’t “feel” right. And make no mistake about it they feel anger as well….they have temper tantrums!
What isn’t often talked about when we read these things is the fact that these kids will remain “frozen” at a certain cognitive level for the remainder of their lives. They reach a point of development and stop gaining. They will never have the mind of an adult. In some ways, these kids live in a world of perpetual happiness and contentment- confined to their environment.
I can see both sides of this debate. One thing is for sure: Ashley will not experience many of the physical problems associated with her birth defect- the doctors have “fixed” these. The problem is will we except this as a correct and moral thing? We go from one extreme to another- some think allowing kids like Ashley to die is the best course of action. And here we see others who are taking it to another extreme by enabling her to live, comfortably, in her own home, thanks to medical intervention.
UPDATE FROM KIM: Please read this post for more about Ashley.
January 4th, 2007 at 10:38 am
Ashley: The Pillow Angel
I hadn’t heard of this story until the Famous Jane wrote about it this morning. Then I received another feed about Ashley from Raven.
For those of you, like myself, who are new to this story… Ashley is a nine year old girl, here in the US,…
January 4th, 2007 at 12:09 pm
:oops: Is it just me, or is “Pillow Angel” offensive to anyone else?
January 4th, 2007 at 6:06 pm
It’s not offensive to me Sniper. When you’ve worked with these kids you will understand what I mean.
January 4th, 2007 at 6:51 pm
frozen in time
The story of Ashley, a 9-year-old disabled girl, who cannot move and usually stays in the same position she is placed in, on a pillow. What’s at issue is her doctor recommended ‘treatment’, which includes a series of surgical operati…
January 4th, 2007 at 9:20 pm
I’ll have to take your word for it. My only experience is with old folks and my own kids.
I don’t find the Angel part to be offensive, as these children are a gift from God; but for some reason the idea of a pillow angel just rubs me wrong.
January 4th, 2007 at 11:09 pm
I can your point…
Many disabled children cannot tolerate being in a regular bed. They don’t sleep well in them; they experience pain and all that. So, years ago medical suppliers came up with fancy mattress covers that are literally huge PILLOWS— nothing like we see for our own beds. The kids love them and sleep much better when placed on one.
January 5th, 2007 at 4:57 am
It is heartbreaking; a situation that would bring parents to make a decision for treatment like this out of love for their daughter. Makes sense; but I don’t know if I agree with it. It’s that weird line between what’s practical and what’s moral,and ethics in medicine is evolving into a frightening thing.
January 5th, 2007 at 8:09 am
Some say this is a social problem…that if her parents had enough resources they could hire home health care people to come in and assist with Ashley’s care as she got bigger. It’s not that simple. First, funding for this is out of their reach because they make too much money to get Medicare but not enough to afford their own aides.
Second, this “help” isn’t reliable- I work in nursing and we can barely keep medical facilities staffed- never mind home health which is plagued with this issue as well.
Usually medical people tend to advise parents of these kids to go for the institutional model of care…but within the past 15 years this is changing. NOW medical folk prefer to see patients stay at home for as long as possible and practical. The mortality rate is high once they are admitted to facilities.
Tough case. I’m not for it or against it.
January 5th, 2007 at 1:43 pm
as a mom of a 13 year old dd kid, i am in total agreement with these parents. my daughter has more function than a pillow angel, but will never have the cognitive capabilities of more than 10 years old. when at 10, she started showing signs of puberty, i wanted to have her uterus removed. nothing more. i want her to grow and to look like a teen and a woman. the gynecologist at our children’s hospital said that it would be illegal to do so. i have extensive tests and doctors’ backing on this, but i cannot have it done. my reason for the removal of her uterus is to eliminate any chance of pregnancy, if, God forbid, she would ever be raped. many people think as perents we do this for “convenience,” and my reply is….there is nothing convenient about having a child with any kind of disability.
January 5th, 2007 at 3:17 pm
ABOUT ASHLEY
Her name is Ashley. She’s 9 years old and weighs only 90 pounds. Her parents, hoping to keep their severely disabled “pillow angel” tiny so that it is easier to care for her, elected to have radical surgery performed that will st…
January 5th, 2007 at 9:13 pm
Who are we, who have not experienced this trauma, to say what is right or wrong for Ashley? Let us leave her parents and their health professionals to care for their gift from God and give them our love and support in a uniquely difficult situation. God chooses uniquely talented people to give these special children to. Live with love, Ashley
January 5th, 2007 at 9:36 pm
I wrote earlier, and haven’t stoped thinking about this all day. I feel that if people who have no idea the stresses on the patients themselves, and the patince of their family and caregivers, those newcommers should shut their mouth and learn, don’t judge others for what has worked. These people who wake up take a shower grab a coffee and a smoke the day away really doesn’t seem to have the right to tell us what is right and wrong. You my dear family need to do what is right and best for you and your pillow angel. I for one will never judge you. Iwas sixteen when my father finally succombed to Alzheimers. And I say finally because at sixteen I had to make sure he was up and dressed and fed and on some days he had to be bathed too, all of this before I got myself showered and dressed and sometimes fed and then yell up the stairs to get my nine year old brother to get ready this was all so I could go to school. Hope to god he didn’t wet himself or got out of the house again and got lost again (we had friends on the police dept)Yet above all of this my aunt scolded us for putting my father into a rehab home, she said it was inhumane. No inhumane is naked in front of you 9 and 13 year old children while they sprayy you down then soap you up again until you no longer smell like piss.LET NOBODY JUDGE YOU UNTIL THEY ARE LIVING YOUR LIFE.10 YEARS AFTER MY DAD my brother committed suicide and again the well wishing noise making relatives or nosey neighbors well these people believe the family is to blame Obviously if we were closer we would have seen the signs. And you know what to hell with them. When someone can walk 1/2 mile in your shoes well lets let them go Until then take it from ME, YOU ARE DOING THE BEST FOR YOU, YOUR DAUGHTER, YOUR FAMILY, AND YOUR HEALTH KEEP RIGHT ON TRUCKING, AND DON’T LET THOSE NAY SAYERS GET IN THE WAY. Just take care of your precious pillow angel God Bless You All
January 6th, 2007 at 1:53 am
Having worked with DD children, both in public schools and institutions, I applaud these parents’ efforts to care for their child.
They are looking at their “angel” in a realistic light, which at times seems so uncommon.
This is particularly so, when dealing with parents of children with DD that refuse to see that at the age of 10 their child cannot hold a spoon to feed themself, or sit alone in a chair, but fully expect their child to drive at the age of 18.
Every family reacts differently to a DD child.
I would much rather see a child cared for by their loving parents, than impersonal strangers in an institution.
My prayers are with these folks.
I applaud their decisions in making informed decisions and the effort to keep their child close at home.
January 6th, 2007 at 5:04 am
Raven, can she swallow on her own,do you know? There is a feeding tube,but Terri Schiavo didn’t need one and had one,too…
January 6th, 2007 at 9:09 am
I don’t know. I would think, given her DX, that no, she cannot awallow. In fact I am willing to place a lot of money on that.
January 6th, 2007 at 10:14 am
Hi,
I’m from Belgium and I’m learning for social worker with people with a mental retardation. I’ve read this week the article about Ashley and I think that the parents have a very negative view on social workers. They don’t trust them, they are unqualificated and the parents have to pay very much. I think this is not a real sight of the story of social workers. If they were all like that, I think there will not be such a long waiting lists for organisations. The parents must be realistic and there is always a change that Ashley will have some complications and that the parents wil not be available to take care for their daughter.
On the other side, I respect their choice, but I don’t know if this is the best choice for Ashley herself…
Bye!
January 6th, 2007 at 7:00 pm
Hi - Just joining in on the discussion.
My slant on it is this, for what it is worth.
My 23 year old daughter is also very severely disabled. You could, in a way, call her a’Pillow Angel’ because she cannot move position when on her pillowed matteress, but we don’t call her that.
(I tend to agree with ‘Sniper’ on that one, I personally don’t like ’sweet’ names being applied to disabled people.)
Also she is far from an angel at times!! She is just a woman, like meand everyone else, the only difference is she cannot use her body in any way, cannot talk, has learning difficulties and is PEG fed. (G tube fitted.) Saying that though, despite being disabled, she is a person in her own right. She has grown into a woman and we are very happy and proud that she has done so. We tell her how proud we are and explain to her that she is a beautiful woman to which, with a big smile, she quickly agrees!
We cared for her in the family until she was 18. Yes she got heavier but we managed. A tracking hoist for one thing was fitted in her bedroom. Which meant we no longer had to lift her. Not being able to lift her did not mean we could no longer cuddle her. In fact we could cuddle her in her hoist! Incidently ‘hoisty rides’ were one of her favourite things!
I meantioned that we cared for her until she was 18. Well as far as we were concerned at 18 we felt that it was time for her to spread her wings and flee the nest. Our other children did that so why not her? So we were very fortunate that a residential bungalow was just being built at the time, in our area, to cater for 4 young service users with severe dissabilities so our daughter was chosen to be one of the four.
This is NOT an institution as you all worry about but her home. She has her own beautifull bedroom decorated to her taste and an en-suit bathroom. The rest of the bungalow is laid out just like a home, lounge, kitchen diner lovely garden etc. The other 3 service users are her age and some of the staff are too! She loves it there, they organise outings, go on shopping trips, and even organise parties for them, everything is to make their lives happy and fullfilled as can possibly be.
I feel that by us seeing to our daughters needs in this way and setting her up in her own home now, not only gives us our lives back from being carers but also gives us piece of mind that she is settled and not at the mercy of being cared for by aging parents who will eventually die and then what?
No we wanted to get her happily settled, not let anyone else do that important job.
Well as I said this is only my slant on it. Each to their own view.
Cheers - Meg.:)
January 7th, 2007 at 5:13 am
:idea: To call this a life is quite a stretch, in every sense of the word. Just because you react to stimuli and exist…. In a living nightmare. My cat reacts to the TV too. This is the bleeding edge of technology and ethics. I respect the parents choice, and the Dr. for trying a novel new approach, but lets be real for a minute… This is existence, not life as we know it. Should someone really be forced to exist in such a state, and who is to say?
January 7th, 2007 at 9:21 am
Hi,I have been working in the disablity sector for over 20 yrs. I know how hard it is for anyone with these sort of challanges to face, until they do hop into your shoes, they do not know how hard it is for you, they can’t judge you. You know what is best for you and your family. Enjoy your precious PILLOW ANGEL, she will bring you lots of delightful precious memories, for years to come. God Bless You.
January 7th, 2007 at 7:53 pm
Dan he thinks he’s Da Man:
You are very ignorant. Ashley is a living person who has feelings- of happiness, sadness, joy, excitement, and yes- pain and discomfort. Kind of like you. Or me. Or anyone. This is not bleeding edge stuff here. Its age old treatment that has been applied to a very young patient- that is all this is. Ashley’s quality of life is much better and will always be so now. Nothing done to her has prolonged her life- these were not life supporting at all.
You’re a really stupid fuck, you know that?
January 7th, 2007 at 7:58 pm
Meg says:
“I feel that by us seeing to our daughters needs in this way and setting her up in her own home now, not only gives us our lives back from being carers but also gives us piece of mind that she is settled and not at the mercy of being cared for by aging parents who will eventually die and then what?”
Unfortunately, many parents of Ashley’s tend to outlive them…Ashley has a high chance of living into her 30’s and 40’s but not much older. This isn’t the rule but it the common reality. Most parents are alive when their disabled children pass on.
My experience shows me that the siblings or trusted other family tend to take over all care issues with these children when their parents can not longer do that- either due to death or impairment of themselves. Siblings- grown, usually place them into nursing homes.
January 7th, 2007 at 8:52 pm
My heart goes out to Ashley, her parents and her family. No one knows what it is like to wear their shoes and unless they are on our feet-we will never know what it is to care for a severely disabled child. Keep on loving your child and do what is in your heart. I am sure that deep down, Ashley feels the love. She may not be able to vocalize it, but she is aware. I respect your decisions and love the fact that YOU are caring for Ashley…in familiar surroundings…her home. May God continue to bless you and your family.
January 8th, 2007 at 12:47 am
Having a handicapped twin with cerebral palsy and also working with many mentally and physically disabled children and adults, I have some knowledge into what was done here and I can see the reasons why. My twin and other females grow up and have periods etc but the pain is extreme for them. They also gain chemical imbalances that are extreme. Before my twin had treatments for it, she had a horrible temper and told me she could not control the moods. She feels so much better and free because of the procedures. I would certainly not agree with the Ashley treatments for everyone but in this case I feel it is justified and I applaud the parents on deciding to keep this girl at home instead of placing her in a home. My sister and I are very close and I was happy my parents also kept her at home where we could treat her far better than those nasty government places. There are many controversies on those facilities and I would never want my sister there ever. They helped this girl to remain at home and can take care of her easier, as well as let her go places, keep her immaculate so she can avoid infections etc, and provide her with love and attention she would never get elsewhere. The government does not need more money to make facilities better. They require better people. I do not see why people are putting down parents that are actually willing to do the job of being parents in this day and age where many who have regular children don’t.
January 8th, 2007 at 1:25 pm
As someone who took care of a quadriplegic gentleman that was hurt at the age of 19 and lived to his early 60’s I can see the logic of Ashley’s parents. Handling a large person puts stress on the caregiver physically and mentally. The surgeries performed on Ashley, while distasteful in thought, are in the long run for her benefit. Being able to only give someone a sponge bath is not adequate. The sores and the constant skin problems take their toll. Ashley’s not getting better. Keeping her a manageable size enables her to stay with her family..that’s all that matters.
January 8th, 2007 at 5:25 pm
being the mother of a severly developmentaly disabled daughter who is now 44 years old I fully understand the reasons for the treatment…had it been available to us, we would have followed it also… our daughter has been over 200 pounds and very hard to transport, she is now down to 175 pounds hopefully she can loose more. If you haven’t been involved with, or had a disabled child with severe challenges don’t be distane about the care or treatment of a precious child with so many challenges.
January 8th, 2007 at 5:35 pm
Sephiroth - It’s common to have twins and one of them have some form of CP or other DD. God Bless you for having the courage to do what is best for your daughter. It’s more than an issue of convenience, for parents. Society should applaud those of you who want to keep your disabled children home, not condemn.
January 8th, 2007 at 5:39 pm
Linda J- as Raven pointed out in her post, many of the surgeries performed on handicapped people were once considered radical as well. People complained these were unethical. We have to keep a historic perspective on all this. And as mentioned as well, not one of Ashley’s “treatments” and operations are new. They have been performed on people for years and years with high success rates. These treatments are now common place and some consider it neglectful if they are not performed.
January 8th, 2007 at 5:42 pm
Barbara Robinson- Bless you and your daughter.
The weight of these people is difficult to deal with. More than lifting- care givers must reposition them often; they are hard to move around in a bed; they do not fit well in vehicles; they have trouble with skin and it’s a serious problem. Not to mention the toll it takes on the body in general- heart, lungs, overall health. And placing these people on diets is not easy either.
Ashley will never be overweight. She won’t have all these issues.
January 9th, 2007 at 9:05 pm
It makes me happy that the parents will do anything to keep their child. Why would an ethics committee be the best judge for these parents? I feel they did what was necessary and only GOD is the true judge.May your family be overwhelmed with love and happiness. Your daughter is very lucky to have parents like you.
January 11th, 2007 at 6:24 pm
Hi - Wow you are so unaware what GOOD GREAT facilities there are out there. Or perhaps I am just lucky with where I live, here in the UK.
Listen folks I am NOT saying that parents are in anyway wrong in keeping their young disabled adults at home, if that is what they want and the young adult wants. BUT I know we would have been very wrong in keeping our daughter at home, not just for our sake but also for hers. (As I say we cared for her ALL through her childhood and teens just like we did for our other children only with our daughter it was 24/7 and now we need and want our lives back. Sorry if that sounds selfish but we have lives too!)
Our daughter also would not want to live at home, she comes home to stay at holiday times but is really keen to get back to her home and her friends, squeeling with delight when she starts to recognise the journey back to her home at the bungalow.
QUOTE - Sephiroth says “My sister and I are very close and I was happy my parents also kept her at home where we could treat her far better than those nasty government places.”
Sephiroth I would NEVER put my daughter into a ‘nasty’ place. My daughter loves living in her bungalow with her 3 other bungalow mates! She is living independantly from her parents at the age of 23 sharing a place with other young people just like loads of other young 23 year olds. (To hear your feelings on the matter would scare people into ever considering letting go.)
Let me reasure you the staff that care for her can give her more attention than I ever could, for they are always refreshed at the job of caring for her. I was usually exhausted, having to care for her 24/7, to be able to keep her entertained whenever she demanded it. They have night staff. I was night staff!!
I can call in and see her anytime and I see her every week and find that she is so happy there. Now I spend quality time with her, not exhausted time. As I say she loves the place, her other mates and all the staff.
Kim I know all too well that we may outlive our daughter. (We nearly lost her 18 months ago.) However if anything bad were to happen to us, heaven forbid, car crash or something, then I would NOT want our sons to have the responsibility of finding a place for her, that is so definately our job.
As I say I am not trying to argue that parents are wrong in keeping their young adults at home just putting forward my experiences of how it can work VERY well letting your young adults leave home. So don’t be afraid to do so if that is what you want to do.
Just do yor homework and find the right place, and then keep an eye to make sure it stays the right place. I tell you this much, rest assured if you find your young person overjoyed at being there like my daughter is in her home then you know it is the right place.
Cheers - Meg.
January 11th, 2007 at 11:31 pm
I just stumbled onto this story earlier this afternoon and then found this blog. I work at a facility that provides care for adults and children with developmental disabilities–many like Ashley.
First of all, I think that it is wonderful that the parents are so involved in their daughter’s life. I know children who have parents who visit their children MAYBE one time in a six month period… this is a good year. I commend any parent who is willing to care for their child as long as they can at home.
I might not agree with everything that Ashley’s parents did, but the love is there. Knowing how hard it can be at times caring for someone who is so dependent and helpless I admire their efforts to improve their daughters quality of life…for the most part.
And for ‘Dan The Man,’ who are you to judge what ‘life’ is to someone with special needs? They are the ones that we learn from; they teach us to live. I hope someday that you will see this.
January 12th, 2007 at 3:52 am
Dan The Man “To call this a life is quite a stretch, in every sense of the word.”
I hope you were not refering to my daughters life as well with that comment. My daughter is such a lovely person, If only you could meet her you would see what a very happy life she lives, and what a lovely woman she has become. You can’t judge the quality of any ones life unless you are actually there watching them living it.
From your comments I could easily judge you to have a nasty, cold, bigotted, heartless outlook on life and therefor be a sad and bigotted person inside, but not knowing you I won’t!
January 12th, 2007 at 8:34 pm
:evil:I think it is an absolute sin what they did to that child and if it was up to me i would have them arrested for criminal abuse of a child and thrown in the jail, how would mother dear like her uterus and ovaries taken out and her breasts removed like a butcher
well thats just what she deserves and her husband should have his breast organs removed and his #@*!!! removed that is bull
January 12th, 2007 at 10:24 pm
:D I think everyone that hasn’t walked a mile in Ashley’s mothers shoes should keep their mouth shut.:twisted: No one knows what they will do when faced with caring for an individual with a severe disability.:oops:
January 13th, 2007 at 11:59 am
Dear Kim,
I have been a school psychologist for almost twenty years. Many of thoses years I have cared for children like your daughter. I fully agree with what your family has decided to do. I have seen children grow into adulthood and their families are no longer able to care for them. It is heartbreaking for the families and the disabled adult because they are unable to stay with their loved ones.
Many people will make nasty comments but you know in your heart what you had to do for your child. I hope that your are at peace and do not let the ignorant of the world infringe on it.
With deapest respect,
Carla
January 16th, 2007 at 2:44 pm
I have worked in the medical field for many years,mostly in a rehab setting.
Until you have walked in the shoes of a parent with a child with a DD you have no clue as to what really goes on in every day life. It is hard,rewarding,exhausting,emotional and it takes a toll on you physically as well as emotionally.
Now speaking from a care takers point of view, I would not trade my time in rehab for anything in the world. People with DD both mild and profound are a blessing and a joy. You should see their eyes sparkle when you pay attention to them or they are finally able to recogonize a family member or even you for that matter.
They can communicate with you in ways you cannot imagine,a wave of the arm,a certian facial expression,the way their legs move.
It is true they are not all angels all the time they have their moments their moods and their hissy fits.
Moving a person with DD who is totally dependent is rough especaially if you have to do it alone. It puts pain and pressure on them after you turn them sometimes they are quiet uncomfortable because it does take a toll on them.
I cannot say what I would do if I were the parent of a profoundly DD child. I would hope God would give me the grace and ability to make the right decisions that would help my child.
We should not cast stones because none of us are perfect beings.
Ashley’s parents did what they felt was the best choice given the situation they were in. Yes this does seem extreme however Ashley has a