Im sorry but I have no sympathy for these people or their kids. They refuse to get abortions for religious reasons - even though GOD approves of killing children and infants who have been born.

These are the same nut jobs who insist on outlawing prostitution and drugs and any other moral sin they can find in the bible.

At the same time they bitch about taxes saying charity should be a free choice - even though it as much of a commandment as those againt sinning.

But isnt it amazing how when they need the help all of a suden its everyone elses duty to provide for them and theirs.

Most americans cant afford state of the art medical care and unlimited rent with round the clock care. Why should it be given for free to people whos famillies refuse to work harder to provide for them?

"Normal" just isn't normal anymore.

I agree with the stance that everyone's pocket should not be picked to roll tax dollars into living care.

I am queasy though when the abortion issue comes up since I am a person on the autism spectrum. To know that many people out there consider my existence to be a mistake that should have been aborted before birth is disconcerting to say the least. I know that many replies will be along the lines of No rsj you are a working independent adult, we dont mean you! if at the time of my conception and birth the dna science had been available to pick it up, it would have been only a vague"your fetus has the marker for autism, what do you want to do", and face it the fear and terror of the unknown might have led to me not being born but yet here I am a productive, intelligent functioning human. I am however very far from normal, and I do not fit in well at times.

Many more of my fellow aspies go beyond queasy and disconcerted into militant opposition to abortion of fetuses that are potentially on the autism spectrum and consider it a genocide perpetrated by Neurotypical bigots. I personally dont go that far, most likely since i do not think about it that much since abortion is a family's personal private decision.

eh, rambling now, sorry.

I am not advocating abortion, I just find it disgustingly hypocritical to claim that having a child is only the parents and then turing around and saying now someone else has to pay

As far as autism goes, I hear ads all the time saying 1 out of every 150 kids has it.

I have to wonder are all these thing really autism, or the just various neruo disorders classifed under autism.

And rsj you say you have the genetic marker for autism. Have there been any advances that would allow people to know how severe it would be?

I go both ways here. I am pro-life, but very very pro-limited-reproduction via birth control. I also do not think the government should pay to raise peolpe's kids and pay for all sorts of expensive special treatment. If you have a child with some sort of birth defect, by all means love it and give it the best life you can. But if it's a genetically inherited aberration and not just a random roll of the DNA mutation dice, you do not need to be having more kids. It's called responsibility, and we need more of it! If you must have more kids, adopt or foster! Oh, no, that doesn't work because you don't actually want more kids to love, you want the ego-boost of seeing your genetics walking around the living room........

"A Christian boasts of their faith...I have seen boasting about charities..."

It seems most of her blog entries are there for her to brag (something she evidently doesn't care for) about her martyrdom/saintdom in choosing to have multiple children with severe disabilities - knowing she can leech from the government to help pay for it.

Am I wrong in thinking that her entire entry could be summarized as a plea for people to feel sorry for her and that she's some kind of martyr/saint for having handicapped children? That everyone should accept her and her children the way she does?

Nah, I think you may have the right of it, Jamie. She could just as well say "see what a good person am I, for suffering so for the sake of my children?" I'm not sorry (said in best PeeWee Herman voice) for her at all. She made her choices, she's got to live with them. That she's imposing on others to is wrong.

I go both ways here. I am pro-life, but very very pro-limited-reproduction via birth control.

Limited to what number exactly? I note your user name "momof3".

Life changes when you have your first child. That is a fact with all couples that have children. Nothing is ever as it was again. Your life becomes a challenge, daily in ways you never imagined.

Yes, dear, that's sweet, but it doesn't answer the question you posed. You asked why you had *another* child after having one with severe disabilities. Why did you make that choice, and did you consider the children you *already had*? I understand that life is a risk, but didn't you owe something to your first severely disabled child? You know, something like less-divided attention?

I once knew a family with an older daughter with cerebral palsy and a younger (apparently perfectly healthy) boy. That boy was so sweet, so smart, and so neglected. It was really sad. I always wondered why they had another child, only to neglect him because his needs weren't so obvious.

In the Peoples Republic of Massachusetts the taxpayers are required to provide expensive customized care for "special needs" students.

It's a great deal if you have a "special needs" kid but if you live in a town with more than a few of these kids ... it's not such a great deal.

I'm talking hundreds of thousands of dollars for transportation + even full time care at schools
in another district if the local school district does not have the "appropriate" facilities to handle the "special needs".

And don't you meanies say these kids don't "deserve" this!!!!!!!!

No wonder that woman in Kansas thinks nothing of having more kids.

"But if it's a genetically inherited aberration and not just a random roll of the DNA mutation dice, you do not need to be having more kids." - momof3

I agree w/ that. Maybe getting tested for certain things *before* having kids isn't for everyone (face it: lots of kids aren't planned. Even when you're using protection.). But if I had a mentally disabled child I would seriously consider getting tested for genetic things before having another child. And I would only have another child if:
1) I could pay for both, disabilities and all.
2) I had the time and energy to dedicate myself to both children equally.

"Limited to what number exactly?" - Jody

Limited to what you can support financially and emotionally without draining society beyond the necessary "evils" such as public education. And without causing suffering for the others. If I'm homeless and a drug addict my magic number, in my opinion, would be zero. If I'm loaded up the ass and don't work I could probably manage a few more kids.

If I have a child that is severely disabled and this child takes up every second of my spare time I probably should not have another kid. It wouldn't be fair to the kid.

"you want the ego-boost of seeing your genetics walking around the living room........"

...bingo.

People should know their limits and stop being stupid by ignoring them. That goes for having kids and alcohol alike.

What a waste of air and blog space from this entitled, breeding nutcase. Although what she is doing is so wrong, I wouldn't be so condescending towards her if not for the statement about gas mileage: "As if! This is a benefit from the state. When they pay me, I will pay others"

What irks me about people like her is that you can never convince them they are wrong. Agenda driven because of their own shortcomings, they make themselves 'good' by becoming some sort of martyr. Backward reasoning. And 'the state' pays for it.

Society DOES understand. The woman is non normal, and that's why 'society' is wrong and she is right, at least in her disturbed mind. It reminds me to check out non-normie dot com now and again; a good place to learn about what motivates so many of these people that are indeed batshit nuts.

I dated a woman who had a severely retarded son with cerebral palsy-type symptoms from a difficult birth. He was grown by then and living in a full-time care facility, which is where I was introduced to him.

A short time later, it occurred to me to ask, knowing that my date wasn't living in great wealth: who was paying for his care?

She thought I was being intrusive for asking. Turns out it was the State of California. Which actually seems reasonable.

The paying for it, I mean. Being skittish about telling me was wrong.

No matter how young and fit the mothers and fathers, there are still going to be babies born who need more attention than loving parents (especially those with other kids) can provide. Yes, the rest of us (aka the State of California) should cover this.

On the other hand, no one should pretend that money was provided through some private arrangement, either. It's by definition a public investment.

So what I mean to say is... There's a boundary between childbearing as a personal matter and a public one. The rest of society will always deserve assurance that you have good judgment before you get started at it.

I wonder if having all these sick children fulfills some sort of twisted need she has to feel needed. Ick.

I read the rest of the two items on her blog and they are really one note. She spends most of the time talking about how the churches in Kansas aren't accepting of her and her children. How they are not real Christians. It all seems to push her agenda of "look at how great I am for caring for these special needs children of mine." I totally agree with Flynne about her self imposed martyrdom. Also, I get the same vibe that Pirate Jo gets that she just wants to feel needed.

Lujlp

Sorry for my poor writing that led to confusion. FRom what I understand the last time i looked at the lit there is not anyone marker, and I am sorry. After re-reading what i wrote (later inday after numerous cups of coffee) I realize where i went wrong.

i meant to try to write about IF there was one marker, a young family hearing about it would be so full of fear and overwhelmed they may abort wtihout realizing that it is not the horrible sentence they think when they hear autism. Again I apologize. i am an aspie, and i cant help but wonder if the tech for that ws available back then, and now, if I would be here, or if other who would have been like me would be aborted in future.

Temple Gradin in her books when speaking of autism, treatments and diagnoses, explains that there is no one cause that can be pinpointed, that there is so many different issues lumped under autism that it takes a very case by case observation and trial and error to effectively treat. what works for one, may hinder another. She also makes very strongly the argument that the internal lives ofeven the most limited and handicapped are valid, and legitamate.

She puzzled a bit over the conundrum of abortion and the futrue of more and more sophisticated dna testing and had no answer herself.

I am rambling today, usually I can be more concise, I am having trouble today. apolgies to all and thanks again amy for a great blog and column.

"But if I had a mentally disabled child I would seriously consider getting tested for genetic things before having another child."

Gretchen,
Personally, I would too.

Still, schizophrenia, for example, is one of those devilishly complex conditions that often doesn't manifest at all until the child is in (his) mid to late teens. Long after you may have confidently had a second or third.

"Momof3" referred specifically to the "need" to have kids. I'm not sure I could prove I "needed" to have my two!

I certainly didn't "need" to have my 2, but I wanted them, so I had them. Had I only known then what I know now... o_O

Amen, Flynne!

crid, while I have no problems placing these people who cant live with their famillies in a facility of some sort I do object to a number of things

1. Letting the live "independently" with round the clock care, put them in a dorm system where any care being provided is for alot of them by a fewer number of care givers rather than a few of them by a greater number of attendents

2. In the case of extreme cases where they require 20 different medications to keep them alive. If they are incapable of surviving without such medication why cant we let them die the way we let mentally sound people die when they cant pay?

3. Organ transplants - why are they getting organ transplants?!?!?!

I know I sound cold and callous, the truth is I dont have kids and I never will. With my upbringing I'd make a horrifying parent, I dont know how my sister manages. My point is as a childless observer on the outside I see thing people who have and want kids refuse to see. Some people are better off not having kids, society is better off if certian people would have kids.

How much of our resorces are expended keeping the infirm and diseased alive?

What if instead of spending billions to give health care to geriatrics who cant leave their beds, or to severly diabled children who wouldnt survive a week without thousands in medicale care - we used that money to acctually educate americas children so they could grow up get a job and support themselves?

And anotther thing why is the state responsible to provide millions in managed care for the mentally disabled but not for the thousands of prepubecent children dying from physical disease?

What makes the mentally disabled so special that people will advocate to spend tax money on them but not the kids dying of lukemia or some other physical illness?

"Limited to what number exactly? I note your user name "momof3". "

Limited to whatever number people can mentally and physically and financially care for and support, not a certain # of kids a person can have. Some people should have dozens. Some should have none. I was merely using that sentence to point out that while I am pro-life, I also agree that many people have no business having kids for any number of reasons, and should use birth control to ensure they don't.

I remember seeing a special about a pair of Harlequin girls (harlequin ichthyosis) living in Britain. The parents knew that they had a one in FOUR chance of having another Harlequin child, but took the risk anyway hoping for a normal child. It didn't happen.

It was sad to realize that the eldest sibling knew her parents wanted a normal child. I remember watching it and thinking, "That's sick. The risk was so high, but they did it anyway! Why couldn't they have been happy with just her, or adopted," etcetera. I don't know if they were living on aid, but I do know that I find it worse when people who take those risks do it on the dollars of other people. It's one thing with the first kid (particularly if you have no idea it's coming), but two, knowing the risk? Stupid.

Jean I saw that too. From wiki:

"The girls all went through a daily routine of getting up early in the morning and bathing for two hours to soften the skin, scrubbing hard to remove as much of the hard extra skin as possible, and then covering their entire bodies in a thick layer of moisturiser. Even with this treatment a thick layer of hyperkeratotic skin covered them and they were plagued with infections. Scales on the inside of the eyelids had blinded one of Lucy's eyes and left the other eye with 10% vision. Hannah Betts also suffers from cerebral palsy."

But at least they can grow up with the knowledge that their parents wanted a better child then them, Im sure that is a heartwarming thought.

Personally I think we should test everyone for narcisism and if you score high enough we just shoot you in the head

> Letting the live "independently"
> with round the clock care, put
> them in a dorm system where any
> care being provided is for alot
> of them by a fewer number of
> care givers rather than a few
> of them by a greater number of
> attendents

Where exactly is that happening? The fellow I was visiting wasn't exactly in a country club. And to be clear, these United States citizens were in no way responsible for their own plights. Nonetheless, I promise you, their home was nothing like the Waldorf. It was clean and it was safe, but it wasn't pleasant. Two minutes into the first visit, I promised myself I'd check in as soon as possible when the next earthquake hit, because they're going to need the help. There's almost certainly an old folks home near you that needs the same consideration.

I live in phoenix, there are thousands of old folks homes near me. we have a comapny out here, a subsidiary of the bus co, its called dail a ride

Costs 2 bucks they'll take you nearly anywhere and the comapny that runs it collects nearly $40 per person per ride from the feds.

I know a couple of the drivers, they are picking up the elderly, infirm, and disabled - often from private homes where, again, the government pays(thousands of dollars) to 'caretakers' with little or no training.

The reason is to give these people a 'normal' life a possible letting them live in small groups in private residences rather then "warehouseing" them in some "dark dank" facility

And in truth I would have aboslutly no problem with it if our government didnt have a 60yr track record of shity finacial decisions.

Here in az schools are closing due to lack of funds, missing things like lockers and sports programs due to lack of funds,

We have a senile saddsitic sherrif who is costing us tens of millions in wrongful death lawsuits, not to mention simple collateral damage - morons burnt down a house while serving a misdomen warrent on a guy who missed TRAFFIC court - but their trying to find funding for a 2 ton solid copper ball for some shitty monument or something

ANd the federal government is worse - I just dont see how e can afford to provide care for millions of people when we are in debt to the point of drowning and we just keep borrowing more money to fight in Iraq for a bunch of homocidal and suicdal asshole who wont fight for themselves but are more than willing to stab us in the back as we try to help them

lujlp -

Letting the live "independently" with round the clock care, put them in a dorm system where any care being provided is for alot of them by a fewer number of care givers rather than a few of them by a greater number of attendents

The reason that many mentally ill people are living in "group" homes or other partial care facilities, is because warehousing them was too expensive. Trying to maintain a state hospital is a lot more expensive than keeping them in low managed care facilities. Security is extremely expensive in the hospital setting and mental hospitals are not much different than prisons.

Group homes and managed care facilities don't require twenty four hour a day monitoring of residents. They don't require a lot of the staff that the hospital does. They also offer a great deal of flexibility in the level of care offered. Facilities can be found that provide as little or as much help as a particular client requires, up to and including lockdown facilities.

Bottom line, it's cheaper to put them in group homes and managed care, than it is for the state to simply warehouse them.

And a lot of times the medication is not keeping them alive, it's keeping them from harming themselves or others. Unless you advocate euthanizing them, or putting them in prison for crimes they haven't yet committed or could have avoided committing had they been medicated, I don't really see a way to just stop medicating a great many of them.

I have to wonder are all these thing really autism, or the just various neruo disorders classifed under autism.

Disclamer; I am going to use the term disorder to describe mental aborations that I do not believe are all bad or deserving of the label disease. I use the word disorder in a clinical sense, not as a literal descriptive.

Autism (more accurately; autism spectrum disorder) is a class of neurological disorders. There are a lot of folks who would like to include ADD/ADHD in that classification, due to a lot of similarities that strike some as a matter of degree rather than evidence of a completely different neurological disorder. The juries still out, but as we get a clearer understanding of the neurochemistry of ADHD and of ASDs, it should become clearer.

It should be noted though, that the increase in scope of the label autism, is largely do to our increased understanding of neuroscience. Because many saw (many still do) neuroscience as flying in the face of mind/body duality, it has only been in the last fifty years that any real study has been made. This was even apparent in psychiatry as little as forty years ago, when most of psychiatric medicine was focused on various forms of chemical straight-jackets.

Thus we have seen drastic increases in the diagnosis of autism in the last few decades. The criteria has been expanded a great deal to take into account a full spectrum of closely related disorders. Said similarities include very similar brain chemistry and interactions.

I'm just gonna toss this grenade in here, in regards to lujlp's post quoting 1 in 150 kids having autism. As per my pediatric neurologist this is a number botched all to crap by the public schools, and I tend to agree. I'll explain both points. He spends most of his day fending off parents and schools trying to get kids diagnosed (labelled, more like it) as autistic so that they qualify for services. Paid for by our tax dollars, of course. Some parents want it since their kids obviously have issues and need help, schools want it for the extra federal funding. Dr. S would rather spend his time taking care of the real heart of the matter, find the real diagnosis and suitable treatment, not catering to self-diagnosing parents and schools with their agendas.

My personal experience follows this. My daughter has a rare neurological birth defect but is miraculously fully functional, no impairments in spite of the pathology of her diagnosis. We had her in public school for two years, but she wanted to go to another school with her big sister. When I indicated that we were going to change, the public school flipped out and slandered my daughter to the new school. When the smoke cleared, we found out that the public school lost $18,000 in extra federal funding for having my "Other Health Impaired" daughter enrolled with them, and they hadn't even been providing services, just pocketing the cash and ignoring her.

I have also met two low-income families who have been offered a split of the extra money by their public school if they just had their normal but quiet child diagnosed autistic by a doctor in cahoots with the school. Again, these are your tax dollars being tapped.

Sorry, just read how I worded my third paragraph; the school lost that $18K when I took her OUT, not while having her in there....