Caregivers Killing Their Children: Autism's Parent Trap

[Radio_Lady]

Can you share your feelings on this difficult subject?



Autism's Parent Trap

By CAMMIE McGOVERN
Published: June 5, 2006 (New York Times op-ed)

In recent weeks, three stories have hit the news with grimly similar plotlines: parents accused of killing their autistic children.

On April 12, in Hull, England, Alison Davies and her 12-year-old son, Ryan, fell to their deaths from a bridge over the River Humber, in an apparent murder-suicide. (A note was found in Ms. Davies's kitchen.) On May 14, in Albany, Ore., Christopher DeGroot, 19, was trapped inside a burning apartment. He died in a Portland hospital five days later, and his parents are charged with murder, accused of locking their son in the apartment alone. And on the same May Sunday, in Morton, Ill., Dr. Karen McCarron admitted to the police that she had, the day before, suffocated her 3-year-old daughter, Katherine, with a plastic garbage bag.

Family and friends have come to the defense of two of the parents involved. "Ryan was the focus and the purpose of her life," Alison Davies's sister told The Sunday Times, calling the double bridge jump "an act of love."

A friend of Dr. McCarron's — a fellow member of her local autism-support group — told a columnist for The Journal Star of Peoria, Ill., that Dr. McCarron had devoted her life to Katherine. "She never took a night off," the friend said. "She read every book. She was trying so hard, pursuing every lead."

Chilling words to any parent of a child with autism who remembers, as I do, reading every book, pursuing every lead and never taking a night off — because autism feels like a war you re-arm yourself nightly to wage. The comments suggest the parents may have been trying too hard. Perhaps they were frustrated that their efforts did not lead to greater improvement in their children. That would not be surprising, because dramatic improvement is what too many parents are led to expect.

MORE AT: http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?_r=2&oref=slogin&oref=slogin

[noonwitch]

1. I have no sympathy for the parents who kill their kids

If you can't handle your autistic kid, there are programs to help you deal with it better. If the kid is very limited and older, you can't take care of him or her alone, anyways. You need help.

can you imagine how awful for the kid whose parents locked him in the apartment to burn to death? What an agonizing thing, to die a painful death knowing your parents did it to you!

I know autism is difficult for parents to deal with, but there are parents who do it every day.

I'm curious what posters who have been diagnosed with autism or asberger's think about this. They must be horrified by it.

[Warpy]

2. Uh, PROGRAMS?

You mean like handing the kid over to be a ward of the state and warehoused in some children's nursing home? Sure, that happens once in a blue moon, but the bureaucratic hurdles are nearly insurmountable and don't forget that these parents are just as attached to damaged children as they are to whole one. There is simply little support out there for intact families. If you can't cope on your own, well it's ALL YOUR FAULT, don't look to us for any help.

Hell, even parents of normal children crack once in a while due to the lack of social support.

I DO have a lot of sympathy, especially when it's a murder-suicide. I DO think we need better community based mental health care funded by single payer insurance. I DO think the country has dropped the ball, not the parents who were so desperate for a way out that they ended it all for themselves and/or their suffering children.

If you haven't been a caregiver, then you can't possibly understand the stress.

(Oh, and locking the kid in was to keep him safe and not wandering alone in the street. There is no indication the parents started the fire.)

[Feron]

14. Actually arson is suspected in the fire.

In our investigation, we determined that nothing accidental happened. No candle fell over, no electrical problems. Nobody left the pot on the stove, so then it becomes suspicious in nature and the police get involved," says Wanda Omdahl.

On Friday evening, Albany Police arrested Nicolaas and Agnes Degroot on first degree arson and manslaughter in the second degree charges. They are now held in the Linn County Jail.

http://www2.kval.com/x56601.xml

[Ilsa]

15. With 1/175 getting the diagnosis, we are going to become a

potent political force for change and funding, I hope. I must say, though, it is really hard to be an activist when you have "total care" of a teen or adult that has to be given diagragms every time of how to brush teeth, get dressed, etc. I have to fight my son to keep him from being naked all the time.

[Karenina]

57. You nailed it, Ilsa.

I stay active, knowing how impossible it is for parents in-the-thick-of-it to even take a piss in peace. The political advocacy is as draining as dealing with the moment-to-moment issues.

Kidunit2 had this "thing" of stripping down to his diaper whenever we crossed the threshhold. I'd explain that we were just dropping things off and had to go back out. Getting him dressed again involved head-banging, kicking and screaming. Then I had to fight for behaviour mod which had the wonderful effect of reducing the behaviour to him taking off his socks. At LEAST we got that service. I was EXHAUSTED, Ilsa, as I know you are.

[Ilsa]

58. Thanks for understanding and sticking with it!

:thumbsup: The help and advice of those that have passed this way are invaluable to the new parents and workers and professionals in the field.

I tell you what really chaps me some days, though: I know some parents of kids in my son's class, and from what others can see, they do NOTHING extra-curricular-wise with the kids. No extra speech therapy, or things I look for to broaden my son's experience and help him stay interested in the world around him. And it doesn't have to be therapy, but just trips out of the house, etc, even vacation bible school. I also get software and I create things for them to play with and learn from.

[EFerrari]

75. It is hard. I have a list of things I have to do too, every day.

It's hard to scrape together the focus to follow through on other projects.

[PA Democrat]

10. Yes, there are those of us who deal with it everyday but sadly no one pays

attention until a tragedy like this occurs. Those "programs" you refer to are underfunded, overcrowded and grossly inadequate to deal with the needs of our kids and their families.

These tragedies don't happen because the parents are too fucking stupid to ask for help. They happen because the parents ask for help and are told there is none/ too little available or they are put on a waiting list and literally have to wait YEARS for services.

I had a dear friend who had 2 kids with autism. She was the most dedicated and loving mother imaginable. One day she told me that she had once considered driving her car off a bridge with her kids in it. She was so overwhelmed by the demands of raising those kids and there were NO services available to help her, and her family had nothing but pathetic excuses as to why they couldn't help her. My friend worked tirelessly to establish programs for kids with autism because she wanted to make sure that no other parent ever faced the desperation that she felt when there was no help available. It was through these efforts that I met her. She died several years ago of cancer and up until the week before she died, she was reaching out to mothers of newly diagnosed kids and helping them find the services their kids needed. I often wonder if the effect of stress on her immune system was a factor in her death.

What has been happening in the past 5 years is a series of budget cuts for every single one of the programs that we parents worked so hard to establish. Condemning the behavior of these parents isn't going to prevent future tragedies. The only thing that can help is awareness and funding for programs to help these kids and their families.

[seabeyond]

28. do you think there is a single person that doesnt see the horror

in this?

[devilgrrl]

32. "there are programs..."

And they're all FREE!!!!!!

:sarcasm:

[lumberjack_jeff]

70. I have a first grader who has autism

He's pretty high function but still, it ain't exactly a box o'chocolates.

Many, many people have committed suicide because of the constant, unremitting stress that raising some autistic children can pose. I know a single mom who is raising an autistic child who frequently can be engaging, funny and intelligent. Other times he eats his clothing, defecates on the floor and chews holes in the wall.

Every child is different, and I've now seen enough to feel immense sympathy for everyone involved.

You might be surprised how little services are available for parents. The state of washington department of developmental disabilities has been chronically underfunded for years, the waiting list is so long, that parents who enroll when the kids are toddlers don't see even the most rudimentary services (such as respite care) until the kids are teenagers.

There are insufficient supports in place for parents of the developmentally disabled.

[bananas]

3. It used to happen a lot with Downs Syndrome

now that it's detectable before birth, they are usually aborted.

[Radio_Lady]

22. I see many adults with Down Syndrome. I always feel compassion

for the parents, who have struggled with this for almost a whole lifetime.

I really don't know how they do it. We had in woman in the town where I raised my children who had a Down Syndrome daughter. She always seemed to be optimistic and hopeful while dealing with her burden. I wonder what ever happened to her.

[HiFructosePronSyrup]

4. I think the second example is rather different.

I don't know the details of the case, but I was under the impression that they needed to keep his door locked to keep if from wandering off. Now that might rise to neglect, even criminal neglect, but it's quite a bit different than murder.

[agates]

5. I can't

As a parent in this situation, I can't share my feelings on this difficult subject -- far too conflicted and painful.

But, I do thank you for posting the article and link.

[Radio_Lady]

19. Thanks, agates. Peace, love and happiness this summer.

[seabeyond]

29. you put me in tears. ......

i hear ya

[NC_Nurse]

6. It doesn't surprise me.

I grew up with an autistic brother. No community support back then, the diagnosis was pretty new. My mother became an alcoholic, not a nice one either. Our family was a mess. My brother was sent off to boarding school for a few years, which cost HALF of the family income per year. Thank God we had enough to make it, then I just had my abusive drunk mother to deal with. It was very tough. My brother does pretty well now, but he'll drive you crazy with his perseveration - like Rain Man in the movie.

I can understand why some parents lose grip. There is more support now than there used to be, but it's a daily battle.

My son has Asperger's syndrome. His is very mild and it's so easy for me to feel grateful for how well he's doing after growing up with 10x worse.

[Karenina]

7. EARLY AND AGGRESSIVE INTERVENTION is KEY!

People need information to recognize the signs that a kid is "wired differently." I lost my 82 year old Uncle last month. With what I know now, I surmise he had ASD - as does my kid. The difference is my kid got
every advantage his mom's awareness could offer.

I was "instructed" to institutionalize my kid but, being the daughter of a neuropsychiatrist who showed me what DSM and PDR were by age 6, I relied on my own sensibilities. Said kid has since been studying advanced mathematics in his second language in Asia.

The MOST IMPORTANT THING is to identify children who are "WD" and to use all the skills we've developed to help them survive in this crazy world.

[Radio_Lady]

26. I am totally unfamiliar with ASD, but it sounds like it has a better

prognosis than autism.

Glad your son is well enough to set out on such a high-level life course!

In peace,

Radio_Lady

[Karenina]

34. Autistic Spectrum/Syndome Disorder

The "Asperger's" designation did not exist when my son was diagnosed. Back then, the kid's forehead just got stamped with an "A" but made us eligible for services of which I took FULL ADVANTAGE. I taught him to look me in the eyes. I observed every evaluation, insisted on video and devised games to teach him the skills he lacked. He was deemed "high-functioning" and was finally signed-off as having "residual autism." :eyes::wtf::eyes:

During my research, I observed about 100 kids for our pediatrician. Only 2 others had the same WD manifestations as my son. I came up with 18 sub-categories from a MPOV as he called it. "Autism" has as many variables as the people living with it.

[Radio_Lady]

35. Karenina, thanks for educating me and others.

[Sugarcoated]

37. "the kid"?

???

[Karenina]

48. Short for the kidunit.

Mine were the kidunits and I am the momunit.

[Ilsa]

43. Yes, thank you very much! I think educating the population is

going to be the next huge hurdle because more and more people in public are going to have to learn to deal with it.

[phylny]

45. As an SLP who works in early intervention, I hear you.

However, I have LOTS of kids coming back from a developmental pediatrician or psychiatrist who's told the parent, "There is nothing wrong with your child. You need to set better limits." Some parents breathe a sigh of relief, others scream, yell, and holler because they KNOW what they're looking at in their child.

I could pull my hair out when this happens, too, because I don't give my little "speech*" for the hell of it, and if some of these kids aren't on the spectrum, then I don't know WHAT is happening to these poor sweeties. Yes, maybe sensory integration difficulties, but the behavior I see just screams out for an early medical diagnosis and many times, they don't get one.

*My speech: "If this were my child, I would speak to my pediatrician to see if we could be referred to a pediatric neurologist or a developmental pediatrician to rule out any other factors that may be impacting his speech and language abilities." This speech is given because I cannot legally diagnose what I see every single day: signs of PDD/Autism/Aspergers.

Aside: At the American Speech-Language-Hearing Association's convention last November, there was a wonderful speaker who talked about research which is being done to help diagnose PDD/Autism/Etc. by six months of age using videos of the child's motor abilities. Seems that in looking at videos of kids who have subsequently been diagnosed, most children had gross motor abnormalities upon reflection. One stunning example was showing a typically developing baby roll over, looking like a "corkscrew": head turns, then shoulders, trunk, legs. Babies who were later diagnosed with autism were all over the place, some thrusting themselves to turn over.

If I could ask God ONE question, it would be, "What can we do about Autism ?"

[Karenina]

54. We were extremely lucky

that the incredible spirit I refer to as "my son" made its entry to this world through me, in that time and place. I guess he tagged me as the right Mommy for him ;-) and I KNEW what I was looking at, even as I had NO CLUE what it really meant. I found out what it meant for us and for others more severely affected. I understand your frustration.

To this day I can spot kids whose PARENTS need education. The doctors who are not up-to-speed REALLY piss me off as THEIR ignorance is a clear and present danger to these children's futures. The TIME they waste cannot be retrieved.

[seabeyond]

64. my child recently has said, i know the other moms are good,

i am not saying anything against them. they are nice. but i couldnt have survived any other mom but you.

your comment, "I guess he tagged me as the right Mommy for him " is right on and made me think of that.

my son from a newborn would wake up from naps shaking uncontrollably. it was so sad. i learned about when it was wake up time and would have all lights off, all noise off and gently rub him awake. he cant do noise.

"KNEW what I was looking at, even as I had NO CLUE what it really meant"

validation all over the place to your post. you are right on

[One_of_8]

8. My limited perspective

My sister is the parent (now single-parent) of an autistic child, who will be turning 12 soon and going into middle-school in the fall. Even when married, the burden of parenting fell mostly on her shoulders. It's a tremendous amount of work, and the only regular break is when her daughter is at school. When my niece was younger, I think we all held out hope that, through therapy, changes in diet, and time, that she might improve. By that, I mean become more functional in society, be able to interact with others, and as an adult, perhaps hold down some sort of job, live in a group home, have some semblance of a happy life.

There have been definite upswings here and there. But she still is severely disabled. She's still not fully toilet-trained, and has to wear Depends at bedtime, and my sister often puts her in Depends when she gets home from school because apparently she holds it in during the day and then just goes and goes when she gets home. On the last time she flew with my niece, there was a baby crying in the plane and her daughter just couldn't handle it and freaked out. They were going to remove them both from the plane, until my sister explained the situation. But still, she had to endure the reproachful or nasty looks from the other passengers. She says she'll never fly with her again.

It's the never-ending slog that gets you down. You can't go out and leave them a couple of hours with a regular babysitter, because most people don't know how to deal with an autistic child. Heck, I don't feel comfortable watching my niece alone, because sometimes she starts kicking the walls, scratching herself, etc., and I am unable to calm her. Maybe my voice is a trigger, who knows? When you are out at the store with an autistic child and they start crying or wailing because a sound is hurting them, no one understands what's going on. The older your child, the less other understand. You are subject to unwelcome comments, some very hurtful, none particularly helpful.

I'm horrified and saddened by hearing about some parents who felt their only option was to end the life of their autistic child. Especially in the case of the murder/suicide, I can't condemn her totally. My heart goes out to that mom, who seems to have felt no other option.

My sister fortunately has a pretty good support network. She's a devout churchgoer and her fellow church members are very supportive and loving. While her church and its beliefs are not for me, for her they have been a lifeline in good times and bad. She has caring and understanding neighbors who don't call the police or child protective services when they hear the screaming that sometimes goes on. She has connected with a few other parents of autistic children, and they do trade off babysitting, or go on group outings with the kids, etc. But it's never easy, just less hard on some days than others.

[Radio_Lady]

25. Beautifully stated, One_of_8. I hope things get better for your sister.

I really don't know what else to say.

In peace,

Radio_Lady

[PA Democrat]

9. As the mother of a child with autism, these stories break my heart

Raising a child with autism can be extremely difficult, and the services available to help support these kids and their families are grossly inadequate.

Over the past 5 years, I've watched funding cut for behavioral support services which can bring about a dramatic improvement in a child's functioning level, and can greatly reduce the stress on families.

At the same time, funding for services for adults with autism is also suffering. Waiting lists for sheltered employment, and for assisted living arrangements are growing. In Pennsylvania there are thousands of individuals with developmental disabilities on waiting lists for services while their sick and aging parents struggle to continue to care for their children.

I expect we will be reading more and more of these stories going forward. I am not saying that what these parents did was OK. I am saying that when families deal with high levels of stress for years and without a good support system, there will be an increase in these types of tragedies.

Autism Every Day video:

http://www.autismspeaks.org/media/d_200605_Autism-Every_Day_LoRes.wmv

[jbnow]

11. Cuts in funding

is especially disturbing to hear about when the incidence of autism is increasing so much.

Our priorities are so wrong.

[Ilsa]

13. I was told there is a twelve year waiting list for group home living here

in Texas, and that was before that goddamn George W. Bush blew the budget and stole all the money for Halliburton et al. Twelve years. Probably 20 by now. In other words, a child who gets on a list when they "graduate" (realistically, kicked out because they are too old to continue training in high school) will have to live with mom and dad until he or she is in their 30's.

[Feron]

20. Ugh not that awful video again

Fantastic rebuttal (and relevant to the OP too):

http://ballastexistenz.autistics.org/?p=112

From the link:
-------------------------------------------------
The “feelings” that people have, do not spring out of nowhere, of course. They are learned, through countless little “background” attitudes that are not questioned. They are reinforced through several well-known cognitive loops, and through subtle and not-so-subtle propaganda (it is the nature of propaganda, like the Autism Speaks video, to be persuasive).

The “feelings” that people “express”, do not go nowhere, any more than they come from nowhere. They affect people, they affect other people’s attitudes, they may reinforce or contradict attitudes in the dominant culture. When they reinforce attitudes in the dominant culture, and the “feelings” stem from highly destructive attitudes to begin with, these are not innocent expressions of feelings. Particularly not when expressed in a method meant to be viewed or read by a national or international audience. Publishing is public, it is different from having feelings in private.
..........

Nobody who is aware of something is truly a bystander. We are all part of the culture that currently contributes and responds to the devaluation of the very lives of disabled people, including autistic people. How we respond, especially publicly, to the notion of some kinds of people being more disposable than others, some murders of innocent people being more understandable than others, has a part in shaping these attitudes. Reinforcing them, or fighting them. Every one of us is part of this, whether we know it or not, whether we feel like it or not, and whether we want it or not. It’s not optional.

When someone publicly states, “I understand the despair that drove the mother to feel that way,” they have a responsibility not to simply leave it at that. There is a difference between despair and homicide. There is an enormous difference between despair, and wanting to kill one child with a devalued characteristic but staying alive only because you have another child without that characteristic.

--------------------------------------------
As an Aspie, this author speaks for me. Not some group that wishes me dead or bludgeoned/chelated until I'm "normal". I don't want to be an NT nor do I want anyone's pity.

Working with special needs children to help them function and maximize their capabilities is a good thing. However you can't turn people into something they are not.

I often wonder where are the other people in the lives of the OP's story. Certainly being a parent of a mentally ill or disabled child is highly stressful, but I often wonder how many of these deaths could have been prevented if other family members or outsiders had recognized that something was terribly wrong. Or quite simply tried to help out or lend a friendly ear. Obviously not all of the deaths are preventable of course, however some could have been.

But then again, when these "respected" organizations send parents the message that their kids are something bad and to be killed, what else can society expect?! Sadly eugenics is alive and kicking. People would much rather fund a "cure" than to help those already here.

"They fear what they do not understand" -from the 90s X-men cartoon

[One_of_8]

47. Again, my own limited perspective in response

to: I often wonder where are the other people in the lives of the OP's story. Certainly being a parent of a mentally ill or disabled child is highly stressful, but I often wonder how many of these deaths could have been prevented if other family members or outsiders had recognized that something was terribly wrong. Or quite simply tried to help out or lend a friendly ear. Obviously not all of the deaths are preventable of course, however some could have been.

But then again, when these "respected" organizations send parents the message that their kids are something bad and to be killed, what else can society expect?! Sadly eugenics is alive and kicking. People would much rather fund a "cure" than to help those already here.

1. Where are the other people in the lives of the OP's story? Good question. In my own life, my sister lives across the country from the rest of my family. So none of us are "on-site" and we see her once a year, if that often. We speak frequently by telephone, but of course that's no substitute for face-to-face time. She (my sis) moved across the country when she married her husband. She's established friendships, roots, and her autistic daughter has an established routine and teachers/classmates that she is familiar with. So my sis, naturally, does not want to pull up and move back across the country to be closer to family.

I agree that having a support network can make all the difference in the world. But I can also understand that sometimes, sadly, people can feel like they have run out of options. Especially the mom who committed suicide after killing her child - I don't get the impression that she thought her child was bad or broken, and therefore expendable. Rather, even with the bare bones of the story, it seemed a tragedy. A mom perhaps unable to care for her child any more, no resources available, and unable to bear putting her child into a home where he might be miserable or ill-treated. I hope that both souls are at peace.

2. I'm not sure what organizations you feel are sending the message that autistic children are bad and deserving of death. But because I'm touched by having a niece with autism, I can say that no one in my family feels this way. I also have a sister with Down's Syndrome, and we never, ever, felt that she should not be alive. Rather, she is and has always been a blessing and a joy in our lives. Our only sorrow is when she recognizes she is different somehow and feels sadness, then we feel sorrow at her confusion. But she is deeply loved, and so is my niece. But I think many of us do worry, what will become of her? What if my sister becomes incapacitated? Who will care for our niece?

As parents, we all worry about our children, especially how they will fare if we are no longer there to look out for them. If you are faced with the prospect of a bleak, loveless and maybe abusive situation for your child should you predecease them, what thoughts must race through your head? What fears and anguish must wake you up at night? I can't condemn that one mom who took her own life after taking her child's, because I think it was motivated by love, not lack of it.

[Karenina]

51. There are times when families

Just.Don't.Get.It. I lived in my car for months to preserve my son's routine after the marriage break-up. My family made support contingent on my moving with the kids back east to live with my mother. NO CHANCE. I explained that no matter HOW ANGRY I was with their father, to so profoundly separate them from him would be unfair to THEM. Never mind the "he'll grow out of it" ignorance. :eyes: I had my hands full advocating for BOTH my sons' best interests without having to educate the "unwilling to comprehend."

[phylny]

46. Funding for respite services in my county have all but disappeared.

Of course, our Compassionate Governor Pataki has been trying to gut early intervention services ever since coming into office.

[Ilsa]

12. I could never do that to my autistic son.

And today has not been a good day, but I can't imagine burning him to death. But yes, I could see maybe getting so messed up in the head that I might do us both, like the mother who took her child off the bridge.

Parents of autistic and developmentally don't always get the help they need. I heard that California cancelled the program that provided respite care for families. School budgets are so tight they fight against spending any extra money on your child until you threaten to sue their asses, and even then you may not get much help.

It's a horrible thing, what these parents did, but even state institutions are not always the answer. How many of you have heard of girls or boys being raped in institutions? Or abused? They used to run medical experiments on these people without anyone's notification or consent for crissakes. Do you think the Bushies and their ilk would stop the greedy pharma cos from doing it again? It's a roll of the dice.

And for anyone who thinks it must not be that bad, I dare you to try living in the shoes of some of these parents for a few weeks. There are some hard cases out there. My nine year old is almost strong enough to buck me if I have to do a wrestling "take-down" when he tries to LITERALLY SCTRATCH HIS BROTHER'S EYES OUT! I had him pinned to the floor and he almost tossed me. In six months I suspect he'll be able to, and then I'm not sure what we'll do except run away.

[Radio_Lady]

23. Ilsa, my heart goes out to you. Thanks for posting.

I wish you courage and strength to bear this burden.

[seabeyond]

30. as i said in another post, i have a friend

who had to be taught restraining holds.

i use to go to a board that had people in your situation. it was a ard core board and i heard lots of stroies, they broke my heart. there are so many unique ways these children are efffected. mine is not aggressive......

[Ilsa]

42. It was and is a last resort.

Yesterday I was leaning back in my recliner and he came at me for saying that we were not going to the deli for sphghetti, but I'd make him some at home. I had to put the soles of my feet up for him to hit to avoid him hitting me. My husband, who has a rotovirus, managed to take him for a timeout in his room.

If I am sitting or up, I do a "blocking procedure" which takes a while to work, but redirects his physical activity. It is mildly punitive, making him pick up two dozen assorted buttons off the floor. Sometimes I have to get behind him and do hand-over-hand work and then he finishes. No reward or reinforcement.

Most of the time, we can fend off these assaults with distractions or shifting the schema.

HE did great today at the dentist for his checkup though!

And everyone, a big SHOUT OUT and thank you and big hugs for sending your prayers and good thoughts.

[PA Democrat]

44. Hi Ilsa! Glad to hear about his dental check-up!

OMG! That was a HUGE issue for my daughter when she was younger.

Sending some more prayers and best wishes your way.

[seabeyond]

52. thank you ilsa

for tellign me your story. i have been paying attention to this for years. best to you. and you remind me. i have to get appts for my kids

[Karenina]

36. Dearest Ilsa

:hug::loveya::hug:

[One_of_8]

50. Ilsa

My thoughts are with you.

[BlackVelvet04]

16. How sad.

I have the utmost admiration for anyone who is able to deal with an autistic child, day in, day out. I myself wouldn't be able to cope and I know that about myself. I consequently don't have children.

[Radio_Lady]

24. Most children are born normal, BlackVelvet04. But I respect your

decision. Having children is a big responsibility. Everyone should go into it with their eyes wide open.

In peace,

Radio_Lady

[BlackVelvet04]

55. Yes, most children are born without disabilities and birth defects, but

I watched an aunt go through hell with a child that had Down's Syndrome and a heart defect. When I had an inexplicable miscarriage and resulting complictions I decided that I just wasn't cut out for motherhood. I admire those who can deal with the pressures of parenting.

[seabeyond]

59. and your decision is all your, respectfully.

iw as so old before getting married i had come to the conclusion that i wouldnt be having children. and i was good with that

[seabeyond]

31. why i am pissed about the cavalier dismissal that it is the mercury

with the increase. i had direct evidence it was with my son, before it was ever mentioned. not a thought in my head that mercury was the cause. jsut the reaction my son had after vaccinations. now the defenders of these vaccinations tell me, not that.... let it go. i wont. they dont have a son that will be challenged a lifetime. people who have not experienced a child who is like this may both have the drive to find out why so many of our kids are being effected. i want to know.

[phylny]

49. I don't mean to sound disrespectful as I'm certain that you saw the link,

but that's not the total answer.

I know two families who didn't have their children vaccinated at *all* because of the suspected link between mercury in vaccinations and autism (edited to add: and a family history of autism), and those two children (both girls) have autism. Siblings are fine and were subsequently vaccinated.

I don't trust big pharma or big government at all, but I don't think vaccines are the only culprit.

[seabeyond]

53. i dont think it is either. and there was a history of autism

like the warnings on tuna alone, of late. i think it is absoultely something we are doing to our kids though. and i do have connection with my oldest, after his vaccinations. he seems to have had whatever within that it activated or kicked in with the shots. didnt effect my youngest.

[phylny]

56. Tuna, yup.

I've advised all three of my daughters, NO TUNA and very little seafood until after they've had their babies.

I suspect that for some kids, it's vaccines. For others, environmental insult of some sort - mercury, heavy metal? Hell, when I worked in public schools and now in EI, we can see almost all of our kids who are on the spectrum just STRUGGLE during the Spring. Pollen? Dunno. I just wish we'd find out what the hell it was.

My favorite kids to work with are kids on the spectrum. I just pray for the day I have none left to work with.

[seabeyond]

60. arent you interesting

for about a decade now i have been watching the kids. my two kids are uniquely different yet i see the style of my yongest, and outburt of energy.... he is an energy child. he feels the immence need for hug that is just uncontrollable. i just know when he has to have. or has to give. he feels it with people when they are in need. he has to. feels they need it. when he went thru soemthing two ways, heart to heart if it was feel or forehead to forehead if it was thought. he taught me this. also hands and touch. certain kids, some on back of neck will bring them down, some on top of head.

i jsut have found it fascinating

also with the young one, never able to comfort.... and a feel to him of out of control. (sorry i know some will be offended) but i would say you are askin for a beatin (he doesnt have the same context of hitting by parent as those that experienced) and he would start laughing and it was tickle time. he needed and still does tickle time to get that angry energy out of himthrough laughing. it is truly odd. we figured this out when he was about two. he tells us what he needs, we just have to listen.
but yes, uniquely different kids, needing unique stimulation and comfort.

[earth mom]

17. These stories are tragic and I have all the compassion in the world

for these parents and children. :cry:

There are some gut wrenching posts on this thread but the one thing that is forgotten and ignored by anyone who dares to judge these parents is that the U.S. government-aka Bush Co-has actively screwed over these kids and their families by protecting the pharmaceutical giants who are responsible for these children being poisoned. Oh, sure, some kids were born that way, but the number of autistic children -1 in 166 -in now too high for it to be anything but an EPIDEMIC WITH A CAUSE.. :argh:

What kind of a life could parents of autistic children provide for their kids if they had the financial means-VIA A SETTLEMENT FROM THE PHARMA BASTARDS WHO ARE RESPONSIBLE AND SHOULD BE HELD ACCOUNTABLE!-to not only get their kids the help they need, but be able to pay for that assistance even when they are gone?! Instead these families and children-innocent children!-get the finger from the pharma giants and Bush Co. :mad:

It's no wonder that parents of autistic children are pushed to their very limits. These kids and their families have been so royally screwed over, they may have well been given a death sentence in the first place. :grr:

[seabeyond]

33. post 31.... and how many children DIDNT have to have this in their

lives if we had done something about it. figure out what is causing it. that we did it to them. i think of what my child could have been without this fuzziness in his life. it isnt genetic in our family. what if.... it is from the shots. and they did not have to walk this journey?

[earth mom]

62. Sorry, I meant to reply sooner!

That's exactly the problem! No one is trying to find out! And that begs the question as to why not? Because the upswing is definitely there; Autism used to be RARE. Now it is not!

I am convinced it is big pharma trying to weasel out of any kind of responsibility with the kids paying the ultimate price. :(

This issue is very close to my heart because I have a close family member who is Autistic-so I understand what it's like to be in this situation and how you feel. :hug: That's why I just can't sit back and say nothing about the ugly and nasty greed that has allowed this to happen to innocent children. :grr:

[seabeyond]

63. mine is easy in so many ways because of his uniqueness

unlike the "normal" stuff kids give to their parents mine doesnt in that uniqueness and i appreciate and value this kid so much. but when watching this kid's behavior and he is going on and on and on and on ......my brain starts saying, without this, who would you have been. how can a world allow something to change a kid from who they are.

for a parent to sit and look at the child and know there is something that was done to cause this, that will create a challenge for this kid always....

to listen to the break down because of the mass confusion he lives in all the time. and not being able to get the brain from the fuzzy noise..... and not realizing the social graces to make and keep friends. pisses me off too. and the poster that started this thread, that addressed my thread below, she was the same one, in the other thread that jumped on my ass that it isnt the vaccinations. i wnat to know if she has a kid like this. i want to know.... why a sarcastic comment to a parent would allow her to think i would at all trust her judgment on vacines.

thank you for acknowledging, and seeing it IS an issue

[SmokingJacket]

18. With more support, fewer people would be driven to these ends.

I know that I was depressed with my second, perfectly normal child, and felt many times at the end of my rope. I suspect that part of what these parents are feeling is hopelessness: feeling that if their children aren't "cured," the world will defeat them. I worry about how my children will fare in this incredibly competitive, unforgiving society, and my kids are fine.

If we lived in a culture that supported the weak and the sick and the troubled, it would *still* be painful and difficult to have a different child, but it wouldn't be hopeless.

[Radio_Lady]

21. Thank you for your input. I appreciate your taking the time to respond.

[seabeyond]

27. well as the summer begins with my son. if you arent there you dont know

i think the greatest challenge is you expect after years of a consistancy of always guiding to recognition a point comes when you say,..... he is never going to get it.
this is who he is. i have told teachers, we are not going to "fix" him.

my child is not even close to being extreme. it is a hard world. i have a friend that had to learn restraining techniques as her son became older and stronger. that is a scary world to be in. she placed her son in a home (a beautiful ranch) that he will probably live at all his life.

this is one of those things that needs to be we the village..... because parents need help. these kids need help. and as a society........ we have to work on this issue

[Radio_Lady]

38. Is Robert F. Kennedy, Jr. still involved with the thimerosal issue?

These links are old:

http://oracknows.blogspot.com/2005/06/saloncom-flushes-its-credibility-down.html

http://www.smirkingchimp.com/viewtopic.php?topic=56931&forum=3

http://www.palmbeachpost.com/blogs/content/shared-blogs/palmbeach/columnists/entries/2005/08/vaccine_safe_su.html

This is an interesting response from last year:

While autism rates may be rising, Thimerosal is not to blame. Both Canada and Denmark banned Thimerosal from vaccines in the early 1990's. The data from Denmark and Canada are quite clear. Autism rates have not started to decline, despite no thimerosal in vaccines for 10 years.

It is entirely possible that autism rates are rising because we are more aware of autism and test for it more often.

On the other hand we could always be completely safe and go back to the days of whooping cough and chickenpox. Nobody ever died from those. Oh wait, they did.

Apricot pits and laetrile anyone?

[earth mom]

40. No one is saying Vaccines cause Autism, rather it's the preservative

in the Vaccines that contains mercury-Thimerosol. If you want to really explore this subject, here's a book on the subject that looks at both sides of the issue:

http://www.amazon.com/gp/product/0312326440/sr=8-2/qid=1149797091/ref=pd_bbs_2/104-2499723-1230323?%5Fencoding=UTF8

Evidence of Harm : Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (Hardcover)
by David Kirby

Editorial Reviews

Amazon.com
Avoiding hyperbole while writing about a possible medical catastrophe is no easy task, but David Kirby has created a fine balance of investigative and personal detail in Evidence of Harm. Combining stories from the parents of autistic children with reports, speeches and studies from researchers, pediatricians and government officials, he creates a picture that is as terrifying as anything dreamed up by Hitchcock.

<snip>

Customer Review:

"This is a REALLY impressive piece of journalism and truly a landmark collection of information surrounding the "mercury controversy." At times it reads like an engaging novel with heros and villians; other times takes a purely detached, objective view of scientific evidence. It is a story of ordinary citizens who took up the cause to investigate their suspicions of harm from vaccines. As such, it is somewhat of a "David versus Goliath" story where Goliath is the all-powerful government and pharmaceutical interests - whose interests often appear terribly conflicted.

Everyone wants science on their side of any controversy. But, whose side is it on here - the government and "Big Pharma" or the people who are calling them to task? But science is far less objective as people believe it to be. In most any study or research, there is a lot at stake in the outcome. Anyone who has spent enough time in business or private research knows how easy it is to manipulate either the design or final data to support a pre-ordained conclusion. And, at least as Kirby's account suggests, Government health agencies (charged with the mandate to protect the health of citizens) are not immune to such tendencies. All many of these parents knew what that their children's health dramatically deteriorated shortly after a vaccine series, yet the government's "expert panels" kept chanting the same mantra of "There is no scientific evidence to support an evidence of harm."

But, one government law was on the parent's side in their search for truth - The Freedom of Information Act. After much hassle and dodging, this group of persistent citizens got their hands on many of the internal documents from the CDC revealing the behind-the-scenes discussions, voiced concerns of mercury toxicity and seeming attempts to manipulate and the data to allow the conclusion of "no harm." Your government at work. So, depending on how the data is organized and analyzed, either harm or no harm can be supported. But, it looked like the parent's suspicions seemed to be correct in the end - there did in fact appear to be links between mercury and neurological/behavioural problems and these agencies appeared to suppress the information. But, like a similar issue with mercury amalgam fillings, any such admission of harm would expose entire industries, governments and researchers to massive lawsuits that would rival those levelled against "Big Tobacco." So, as Kirby plainly concludes, don't expect such action anytime soon or at all."

<snip>

:grr:

[seabeyond]

61. do you have a child that has autism, add, asperges? n/t

[Sugarcoated]

39. The challenges I have with a son who is only mildly Asperger's

are nothing compared with what many have to endure 24/7 with a severe Asperger's or Autistic child and some evenings I have dark thoughts of taking myself out of this world. Never him, just me. But I never would. Just thoughts, sadness. Stress, anger. And even going through it to some extent I still can't really put myself in those parents shoes. Sometimes people get to a point where they're not thinking right.

[mdmc]

41. need to read later

:kick:

[mmonk]

65. No excuse for murdering children.

Not even worthy of any debate.

[seabeyond]

66. you are right, ignore it. that is a way to solve problems

smart dude/dudette

[mmonk]

67. Ignore what oh brainy one?

[seabeyond]

68. nevah mind. you wouldnt be part of the solution anyway

silly me. no bother

[mmonk]

69. As a member of the National Autism Society,

Wake County Autism Society, Sponsor of an annual ribbon run for Autism, and the parent of an autistic person, I'd be interested in what you mean.

[seabeyond]

71. with all that information and knowledge and experience

your initial post is all you have to offer. i get you point. i would have appreciated listening to your experience and knowledge and insight into this situation, problem. instead it is hostility. :shrug:

[mmonk]

72. I just said there's no excuse for doing that.

I think the word people should come to grips with is "acceptance". It's only through acceptance that one can do positive things for autistic persons. Instead of looking for every snake oil salesman touting a "cure" or internalizing that's it's all about the caregivers plight and how that person's burden can be lifted, it's accepting the autism as being part of the child. At that point, solutions become easier. Then a person can become an advocate for their child. And then there's one more word. Love.

This is what has worked for me. It doesn't matter if there is little or alot of support since my son is now 21. When he was young there was little or no help available in the world at large. He self stimmed by tapping the sides of face all the time with both hands, stared at ceiling fans, hummed, covered his ears at sudden sounds, ate only cheese balls and we were told he wouldn't be able to learn. Now, he is working on a double major at NC State, doesn't self stim in public anymore, eats normally, enjoys interaction with others, etc. We were able to get to this point using what I simply mentioned above. Acceptance and love leads to solutions one can't imagine in the beginning.

[seabeyond]

73. well

and for this to have started out as it did. from my heart thank you for your story. this is what i hope for with my son. again i say he isnt anything to the extremes, but with all your experience, this is how i feel too. it was good to hear.

[mmonk]

74. Best of luck and success

in life. I'm sure you'll both be just fine.

[earth mom]

77. Acceptance and love are great -they are key IMO. BUT-

they do not go hand and hand with letting the government and the pharma giants off scot free. They must be held accountable or they WILL do it or something like it again, and next time it could be a whole lot worse. :(

[earth mom]

76. Of course there is no excuse.

But far too many of these parents also have little or no help. Most must face the fact that society does not care enough, teachers do not are enough, doctors do not care enough, friends do not care enough, family members do not care enough, and the biggest insult of all is that not only does the government not care, they add insult to injury by catering to the wishes of the pharma giants by helping them cover their asses INSTEAD of holding them accountable. It's an absolute f*cking disgrace!

Parents of these kids are totally squeezed because these children need to be taken care of 24/7. If they don't-and most don't-have the finances to get the help they need-therapies, respite care, special schools or programs, etc., all of which can be very expensive-it's only a matter of time before some people crack under the strain. :(