March 15, 2004 8:38 PM   Subscribe

They only way they could get the care their child needed. "Nobody should have to make this decision"
posted by amberglow (22 comments total)
A tragic story.

I do have to wonder, though, whether one of the parents could have provided care at home, although the financial pressure of raising five children on one income woud be formidable. Still, a lot of people have coped with a lot worse.
posted by dg at 10:11 PM on March 15, 2004

Um, did you read all of the article, dg? Like the part where it was mentioned how this was a last resort, after they had exhausted all of their other options? Financial pressure aside, being a stay at home parent to five children is exhausting enough, nevermind when two of the five children have cerebral palsy and one of those two is autistic and a danger to himself and others. This didn't read to me like a case of "oh, we don't feel like expending the effort to care for our child" but rather of a family taking a desperate step to ensure the best care for their child.

I hope things find a way of working out for them. It's heartbreaking that they couldn't find the support they needed.

And on a practical level, I think this is a pretty good example of why the US should have national healthcare.
posted by Ruki at 11:02 PM on March 15, 2004

Yes, Ruki, I did read all of the article. I even read the part about this being a last resort.

I also read the part about the "sprawling stucco and stone house in a middle-class Alpharetta development" that they own, as well as the two cars and wondered why selling the house was not the second-to-last resort. It is impossible to judge from the article (maybe the house is mortgaged to the hilt and would not generate any capital if sold, for example), but it seems to me that brick and mortar assets would be sacrificed before children. Likewise, was there a reason why one of the parents could not leave work and provide care in the home (again, there may be a valid reason that does not come up in the article)?

Not having all the facts of the case makes it hard to (fairly) judge the couple, but it does seem symptomatic of today's society which often seems to have the wrong priorities. The fact that being a stay-at-home parent would be exhausting is irrelevant - that is the job of a parent, not a chore that you can opt out of because it gets too hard.

I really feel for this family, because they are clearly up against it in a number of ways. I hope that they have a better future ahead of them and, as you say, it is a clear example of the need for a national health care system, regardless of the country.
posted by dg at 11:26 PM on March 15, 2004

I think this is a pretty good example of why the US should have national healthcare

I dunno that a national healthcare system organized along any sane principles would have paid for them to have, basically, their own full-time, highly-skilled nurse at home all the time, dealing with one and only one patient, and in all likelihood until either the death of the child or until they invent a cure for autism, whichever comes first.

I'd think that most plans would institutionalize the kid, which is more-or-less what happened, but without the trouble, stigma, and legal rigamarole of declaring them unfit parents first.
posted by ROU_Xenophobe at 11:34 PM on March 15, 2004

One has to wonder what the foster care people did that was different from what the parents could or were willing to do. And was it cheaper for the state to place this child in foster care, with whatever support the foster parents needed, than to provide support for the family? The article makes no mention of what financial burden the family had from the state. In my experience, families usually pay the state, according to ability. It is not that costly to hire non-medical care workers for in-home care.

I guess keeping families together is not a part of Georgia Family Values.
posted by Goofyy at 11:36 PM on March 15, 2004

dg, caring for an autistic child is not like caring for a normal child, and in many cases the best possible care comes from people trained to look after autistic children, in a controlled environment. I don't think this is necessarily the matter of priorities which you think it is, it's extremely difficult to give fair and appropriate care to five young children when one is autistic, especially to the extent that this child is, where his own safety, and the safety of everyone else in the house, is at risk. It's not always as simple as being a stay at home parent, it really isn't. Goofyy raises a good point, however, but I expect the foster parent was experienced with autistic children or had some similar experience which made it easier for her to care for the child.
posted by biscotti at 11:41 PM on March 15, 2004

dg: did you think of the rest of the children in the family, and what financial hardship would cause them? This might be a motivation to keep the house etc.

Xeno: "highly-skilled nurse" is not what they needed. A good heart, some tanning, and the strength to control such a child are what was needed.
posted by Goofyy at 11:42 PM on March 15, 2004

National healthcare can help. In BC families of severely autistic children are fighting the government through the courts, demanding funding for a new treatment method. Whether or not the BC government has to pay depends on whether or not it's medically necessary.

So far the courts have decreed that it is and therefore should be covered under our health acts. As someone who pays taxes into our national health insurance, my thinking is this is *exactly* what it's for. Apparently there have also been cases in the states, but I would assume the parents would have looked into those options already.
posted by Salmonberry at 11:48 PM on March 15, 2004

Maybe for a great number of reasons having 5 kids is a bad idea. I honestly feel sorry for this couple, but they have made some decisions that led to this; decisions which are not in the best interest of themselves, their children, the taxpayers, the state, or the global ecosystem.

It is horrible that they have to face this choice, but it is not one that was unavoidable. I think we should have national health care, but the plight of the underpaid part-time plant worker with leukemia, or the research assistant with no insurance and hiv are a lot more troubling to me.
posted by rhyax at 1:09 AM on March 16, 2004

biscotti, I am aware that the needs of Autistic children are far different to that of "normal" children and that it would be difficult to provide a good level of care to all five children under the circumstances. I assumed that the foster carer was specially trained in the care of Autistic children, particularly given the $170 per day that the state was paying for the foster care.

Goofyy, yes, one of the first things I thought was that, in some ways, the other children would benefit from not having their brother living with them and I can understand the conflict this situation must have caused the parents - do we throw everything into one child, or take away resources that one child needs to give the other four a better life? A heartbreaking decision no matter which way you choose.

I guess it depends on your point of view with regard to the role and responsibilities of the family to some extent. Personally, I feel (strongly) that the entire family has a responsibility to provide for each of the members of the family, regardless of whether one person needs more than the others. In addition, the parents made a choice in one way or another to have five children and, as the father of four, I know how draining it can be without the extra burden of an Autistic child to deal with. Were the son to stay with the family, there is no doubt that the financial situation of the family would be worse, but the emotional situation must be awful given the current state of affairs. Can you imagine being the brother or sister of someone who was taken away because, in the eyes of a young child, he misbehaved? Can you imagine wondering to yourself if the same thing was going to happen to you next?

A factor in my attitude towards this situation could well be that I have never had to live in a country where basic health care was not universally free, so it is a bit mind-boggling to see parents even having to consider, let alone take, this type of action.

note - I have far more experience with this type of family situation than is appropriate to share here, so you will have to take my word for it. Or not.
posted by dg at 1:22 AM on March 16, 2004

note - I have far more experience with this type of family situation than is appropriate to share here, so you will have to take my word for it. Or not.

dg, the one thing often missing from these threads is first hand experience. I will take your word for it.

So the judge declared the Chandlers --- successful professionals and the loving parents of five --- unfit parents. Like a modern-day King Solomon, she severed the parents' ties to their child. They were no longer his parents. The state was.

This is such a sad story. Is this boy really beyond any help? It seems as though he's already been set out to pasture at such an early age, placed in the "too hard" basket.

For the Chandlers and families like them, mental health care for their children comes at the cost of a supreme sacrifice.

Why all or nothing? Can't they place him on any kind of affordable mental health program, even if they took a loan out? What about charities? Sponsorship? Instead of taking him to a foster home once every two weeks which they have been doing when they had custody of him, why not a behavioural therapist? Have they exhausted all avenues? It seems ridiculous that you have to give up your child to get the mental health care they require. Sounds like something from the 3rd world.
posted by SpaceCadet at 1:57 AM on March 16, 2004

I'm afraid I don't quite understand - did they do everything they could? Did one of them quit their job? Did they consider moving to a state with better services?

I speak as a parent of an autistic child - because of our problem, only one of us has been able to work full time and we've had to make sure that one of us is always watching her. We are much poorer than we would be otherwise - we do not have two new cars or a house in the suburbs.

My child doesn't seem as bad off as theirs and we don't have other children, but still - I really have to wonder if they did everything they could before such a drastic measure. I have a hard time believing their child is going to be better off in the hands of the state - and I have a hard time believing that the other 4 children would be permanently scarred if they weren't able to be raised in an "American dream" suburban lifestyle with two professional parents. After all, millions of children are raised successfully in environments that are anything but that.

I think they really needed to reevaluate their lifestyle and how they could change to accomodate him before they went to such extreme measures.

And biscotti, when one is faced with the problem of raising an autistic child, part of the solution is to become an expert - not in the sense of professional qualification, but certainly in knowledge. It's hard to judge, but I know I would have sacrificed more than they did before doing this - I already have. I know of people in much worse circumstances that are dealing with this problem successfully.
posted by pyramid termite at 3:16 AM on March 16, 2004

I have to agree that the priorities of the family seem a little topsy-turvy. Fulton refused to transfer Jeff to the school in Macon because they felt that they were doing well enough. So why the hell not move to Macon? It's 100 miles, not 1,000.

Okay, so that's impractical, but here's what's boggling my mind. The state is willing to pay $62,050, presumably (state) tax-free (perhaps overall) for a stranger -- albeit a seemingly trained stranger -- to care for this boy. It doesn't seem like either of his parents were ever offered any kind of training, nor was the family ever offered any kind of stipend which would allow for one of them to stay home (do you think that both of them are making more than $62k a year?) or hire some help. It doesn't seem like there's any mechanism in place which would do such a thing.

Therefore, one can conclude that the state's priorities are backwards, too. If that kind of money is available to the caretakers of children with disabilities, it should be available to the parents of those children as well. Not just as well, but first and foremost.

But since the state isn't primarily responsible for kids, even kids who are disabled, my sympathy triggers for the parents aren't quite engaged. Telling their sob story to the media like this, and having it presented without any of their choices ever being defended or even questioned? Not a keen move, not at all.
posted by Dreama at 4:01 AM on March 16, 2004

strangely enough, the one thing that shocked me in the parent's pursuit of a solution was this following paragraph:

A few months later they heard about the Georgia Academy for the Blind in Macon, where Jeff could board during the week and autism and special needs experts could work with him day and night. "I said, 'How do we get our son here?' " Kathi said.
But school officials in Fulton County, where Jeff had been attending special education classes, refused to allow him to transfer to Macon, saying they were meeting his needs, at least his educational ones, school records show.

This is not normal. The Chandlers found a special needs boarding school in their own state that could take proper care of their son. Who knows if the boarding school had an available place, if the Chandlers could have kept their parenting rights, if the boy could have come home to a family over weekends...
The son's school refused to transfer him. And I don't find that normal.
posted by ruelle at 4:05 AM on March 16, 2004

A couple of FPPs away from this one, there's a bunch of Congresscritters seeking to override judicial activism, and here we have a state judicial system working within the only set of options it can offer without getting creative from the bench. My irony meter is pegged this morning.
posted by alumshubby at 4:16 AM on March 16, 2004

Therefore, one can conclude that the state's priorities are backwards, too. If that kind of money is available to the caretakers of children with disabilities, it should be available to the parents of those children as well. Not just as well, but first and foremost.

Absolutely. This is totally bizarre. But welcome to caretaker country. It's an industry that can lobby far more powerfully it's own importance than individual parents can.
posted by SpaceCadet at 4:54 AM on March 16, 2004

Once again I am so pleased to be a Brit. A national health system, free at the point of delivery, and the abolition of the death penalty, are the 2 of the fundamentals of a civilised society (along with independent judiciary and free elections).
posted by Pericles at 6:02 AM on March 16, 2004

I feel horribly for this family, I really do. But at the same time, I have the same questions about their choices as many others here have.

To get my (autistic) son the services he needed, I moved 3000 miles. I turned my life upside down, solely because I honestly believed that it was in my son's best interest. In the past six months since the move, the steady progress he has made appears to have validated our decision.

By design, I am fortunate enough to work out of a home office with extremely flexible hours. His mom (my ex-wife, who also made the move) works as a teacher in the same school district that my son attends. Therefore she more or less has the same vacation days that he does, and my work schedule allows me the flexibility to cover any gaps and to even get a reasonable amount of work done when he is home with me during a working day.

Part of this is good fortune on my part, finding an employer that understands and supports my commitment to my son. But a good part of it is also decisions made by me and by his mom, decisions that positioned us in a manner to best care for our son's special needs.

I have to admit, though, that things would be very different if we had already had other children before Ben came along. I am intimately familiar with another family, one of Ben's classmates from his last school. The parents actually separated, not because the didn't love each other anymore but because the weight of caring for the younger autistic daughter was having a huge negative impact on the older daughter. So they split their household in two, with them taking turns. They still do things together as a family on a regular basis, but for most of the time one parent focuses on caring for the autistic child in one home while the other parent gets a break and gets to spend one-on-one time with the other child. As hard as it is, it seems to be working for them and has brought a measure of normality to their lives. The truth is, hard problems require hard choices. You do the best you can with what you've got, and carry on.
posted by Lokheed at 10:02 AM on March 16, 2004

Lokheed and pyramid (and anyone else), do you think things would be different with universal healthcare? Would there be better or more resources for parents?

I do think it's very different when you have other children, and cannot give your special-needs child the full attention he/she deserves, without neglecting or causing harm to the other kids. Friends of mine when I was growing up were the "other kids" in this kind of situation, and it affected them enormously. (that said, kids I grew up with who had abusive and/or drugaddicted parents were affected enormously too--I guess it's always something).

Dreama, they wouldn't have gotten the kid into the Macon school without the papers and OK from the old school board, even if they moved right next door to it.
posted by amberglow at 11:52 AM on March 16, 2004

amberglow: Here in Canada, I have an autistic brother who is being raised by our mother, and our mother alone. Over the years, she has become phyiscally disabled, and often times doesn't have the strength she needs to get out of bed. She can't work a full-time job, obviously.

If it wasn't for the healthcare and other social programs available, I have no doubts that my mother would've had to put my brother into foster care, or some such.

"I dunno that a national healthcare system organized along any sane principles would have paid for them to have, basically, their own full-time, highly-skilled nurse at home all the time"

ROU_Xenophobe: Our national healthcare doesn't offer a full-time highly-skilled nurse, but it offers a multiple-day-a-week part-time highly skilled nurse. Which, I'm sure we'll all agree, is better than no highly-skilled nurse at all.

Our last Premier here in Ontario was the neocon Mike Harris, who slashed health and social funding. The lack of services available here now have forced my mother to move to another province, where services are more readily available.
posted by Jairus at 1:17 PM on March 16, 2004

The truth is, hard problems require hard choices. You do the best you can with what you've got, and carry on.
This is the essence of being a parent, in a way. Sometimes you just have to forget your dreams and your own desires and do what you have to do. If you are not prepared to do that, don't have children in the first place.

Coming from a country with free health care (with all its problems, Medicare provides the health care that people need if not always at a level they would like), it is hard to understand the situation that these parents were in, but it still seems (from the article alone, of course) that they have not fully explored all the options available to them. Parenting is not always fun happy times and smiles all around like it is on TV and not all problems can be solved in 30 minutes (less ads).
posted by dg at 3:07 PM on March 16, 2004

Dreama, they wouldn't have gotten the kid into the Macon school without the papers and OK from the old school board, even if they moved right next door to it.

You're suggesting that a public school system has the right to refuse to release a student's records when that student moves out of the district?
posted by Dreama at 2:03 PM on March 18, 2004

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