"Autism's Parent Trap"

Discuss autism theories, media stories, and efforts to put ASD on the government agenda here.

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dgdavis64
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Postby dgdavis64 » Tue Jun 06, 2006 6:25 pm

GMAC wrote:

" Acceptance is more than that. Acceptance is knowing that your child may never win the lottery, play in the NBA or win Olympic gold. Acceptance is not about love. It's about harsh reality. I would not presume to accuse any commenters of not loving their autistic child. I believe that Karen McCarron loved her child, as did the DeGroots and Alison Davies. So love has nothing to do with it. Acceptance is not fighting against something, but working with it and giving consideration to apparent limitations, and being open to improvements that come your way and revamping goals and expectations. It's about relaxing with your child, taking pressure off of them and yourselves, learning to enjoy your child as they are, not as they could have been without autism."



I may agree with you if mercury/heavy metal poisoning wasn't in the mix with autism. Kids are getting better and I don't care whether YOU believe that or not. It's TRUE. Acceptance has a place if you're 100% SURE there is NOTHING you can do. But with autism, that isn't the case with EVERY child. It may be with YOURS so you can accept all you want to. Autism is not black and white a and z this and that in a nutshell. There are MANY grey areas and one size does NOT FIT ALL.

To me acceptance is surrender and surrender is giving up. I will NEVER give up, surrender or accept something that is changing before my eyes. My kids are recovering.

If I was the type of person who "accepts" things, my beautiful little miracles WOULDN"T BE HERE in the first place. 12 years of multiple surgeries, infertility and multiple miscarriages. I did one shot at Invitro Fertilization and it worked on the first try, I WON THE LOTTERY! I got my miracles with faith and yes, dare I say HOPE. So don't preach to me about acceptance. You can give up if you want to that's your choice and it's fine. But where I come from, FAITH and HOPE are alive and well and always will be.
You can't say with 100% certainty what ANYONE"S future holds. Miracles happen everyday. All you have to do is open your eyes and your heart to see them.

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livsparents
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Postby livsparents » Tue Jun 06, 2006 7:10 pm

All I can say is that autism is in a very unique position in that you are told that you child has a chance if not a good chance of improving with therapies (everyone chime in on any other neurological disorder where you are given this kind of 'hope' with no specific drug or 'roadmap' to achieve this).

give a mouse a cookie wrote:
Where is the stopping point?


Indeed, where is the stopping point? At what point do you stop when you have this 'hope' given to you? Do you stop at ABA? OT? PT? ST? Music Therapy? B12? GF/CF? Vitamins, probiotics, antifungals? LDN? HBOT? Chelation? Lupron? At some point you draw the line, but at what point? Who decides? Why is it that hope does not = acceptance?

I realize that, quite often, that all these things may drive some to madness, but isn't that up to the individual's own mindset whether they can handle how to raise/help their kids? Don't people go mad doing other things for their kids? Killing 5 kids in a tub; killing competing cheerleaders...our society is replete (sic?) with parents that go over the edge. What these three murders remind me is that autistic parents are dealing with much higher stakes, much much higher stress, so the unfortunately, we are probably going to see more of these. What it SHOULD say to our society is that these parents need help, they should NOT just be sent home with hope, a pamphlet and a phone # of a local support group...

Bill

dgdavis64
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Postby dgdavis64 » Tue Jun 06, 2006 8:08 pm

give a mouse a cookie wrote:Diane-
Explain to me what exactly I am "giving up" on, since you can read my mind.
You say faith and hope are alive where you come from? Do you come from the same place as Dr. Paul Cameron? If so, I'm glad I don't live there....all my gay friends would have been exterminated by now if he had his way. Nice piece of work, that guy.
Wanna know how I got my "miracles?" Premarital sex, sinner that I am...


Do you have to be so negative about EVERYTHING? Since it wasn't Dr. Paul Cameron who authored the article, I don't think it's appropriate to start discriminating against him for his research results that are based on facts. It would be very different if you found something that was untrue. Let's keep this about AUTISM just like the webmaster suggested. I don't know what "you're giving up on," you have to answer that question for yourself.

But a few things come to mind for me just by the way you relate to other people. You sound like a very unhappy person who is always talking about how happy they are.

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Alex's mom
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Postby Alex's mom » Tue Jun 06, 2006 8:20 pm

I thought the article was outstanding .Haven't had much time for reading lately, but I am really glad I read this one. I definitely relate (not to the homicidal part of course !!!), but to the change in perspective as a parent. We've had our diagnosis 3+ years now, and I too remember the Maurice story and the Seroussi story and the Sumlin kid etc and I thought that maybe recovery by Kindergarten was not so outlandish a dream after all. I went through a second wave of grief when it became apparent, that "normality" (as I knew it) wasn't going to happen and realized that while progress has been significant (and will hopefully continue) we need to move from the "temporary setback" mentality to the "lifelong condition" state of mind. If that is acceptance, then I've certainly accepted autism as an integral part of our lives- i.e. I'm realizing that it's there and it won't just go away and it's something we need to work with and around and against every day.

GMAC- you wrote:
There is inherent danger in setting unrealisitic and sometimes (frequently) impossible goals for autistic children. Parents will literally stop at nothing to have a diagnosis removed or pronounce their children recovered, or cured, or indistinguishable from their peers.
Where is the stopping point? After you've chelated for over two years, as one prominent commenter has done with his daughter? After trying Lupron with unexpected results, as another has done? After you've resorted to deception to a spouse about the extent of treatments?


I see your basic point (I think), but I don't agree with the need for a "stopping point" (your examples are biomedical, but I assume you are talking stopping "in general"?)
I wouldn't stop after 2 years of say speech therapy because the child is still nonverbal (I believe you used this as an example in one of the prior threads? - please set me straight if I'm incorrect, that statement caught my eye, though I am pretty sleep deprived these days and may misunderstand more easily :) ).
I don't think that parents who keep trying different things and therapies haven't "accepted" autism. Of course everyone would love a cure (there is nothing wrong with that), but most of all, everyone wants to help their kids. As to how much educational or medical or logical sense the various interventions make.....we each have our opinions on this one- I know I didn't pursue a variety of interventions, but it wasn't in the name of acceptance or because I had reached my stopping point, it was usually because I had a serious logistical problem with the intervention per se .

Acceptance is knowing that your child may never win the lottery, play in the NBA or win Olympic gold. Acceptance is not about love. It's about harsh reality


I agree.
Acceptance is not fighting against something,


I disagree. Unfortunately, unless someone only deals with a mild case of autism-lite, some fighting would definitely be required.

revamping goals and expectations


Yes, absolutely. IMO, this is what it's all about, unless we do that, it's hard to move our kids forward, but that's just the point- the strategy and agenda may change, but we never throw in the towel. At the risk of sounding cliche- it's a marathon not a sprint.
Alex's mom

Susan'sHope
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Postby Susan'sHope » Tue Jun 06, 2006 8:48 pm

Alex's mom,
I agree so much with this statement -

I wouldn't stop after 2 years of say speech therapy because the child is still nonverbal (I believe you used this as an example in one of the prior threads? - please set me straight if I'm incorrect, that statement caught my eye, though I am pretty sleep deprived these days and may misunderstand more easily ).
I don't think that parents who keep trying different things and therapies haven't "accepted" autism. Of course everyone would love a cure (there is nothing wrong with that), but most of all, everyone wants to help their kids. As to how much educational or medical or logical sense the various interventions make.....we each have our opinions on this one- I know I didn't pursue a variety of interventions, but it wasn't in the name of acceptance or because I had reached my stopping point, it was usually because I had a serious logistical problem with the intervention per se .


I think everyone comes to different views with acceptance with how fast and how much their child progresses. If your child progress slowly you might see that autism is a life long thing. If someones child progress alot and quickly then the belief of recovery is easy. To believe that no matter what that your child will recover is being unrealistic. To have hope and believe that your child has a chance at recovery I think is realistic. But to have hope and to keep the fight and to continue striving to help your child progress does not in my book = non acceptance.
Knowledge Without Experience Is Just Information ~ Mark Twain

give a mouse a cookie
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Postby give a mouse a cookie » Tue Jun 06, 2006 8:59 pm

Bill said:

I realize that, quite often, that all these things may drive some to madness, but isn't that up to the individual's own mindset whether they can handle how to raise/help their kids? Don't people go mad doing other things for their kids? Killing 5 kids in a tub; killing competing cheerleaders...our society is replete (sic?) with parents that go over the edge. What these three murders remind me is that autistic parents are dealing with much higher stakes, much much higher stress, so the unfortunately, we are probably going to see more of these. What it SHOULD say to our society is that these parents need help, they should NOT just be sent home with hope, a pamphlet and a phone # of a local support group...


Hi Bill-
Yes, having an autistic child is stressful, no arguments there. I hope from the bottom of my heart that we do NOT experience more murders of autistic individuals becasue their parents could not handle this stress.
And for the record, when my son was diagnosed with autism, we were NOT given a pamphlet or phone # of a local support group. I found the number to a local support group on my own. But we were not given no hope, either. Quite the contrary. I saw the progress that other kids have made, without biomed.
There is no possible way that we can say that WE as parents of autistic children suffer more stress than parents of NT kids, or parents of kids with other disabilities. That's impossible, unless one of us happens to have an autistic child AND a child with another disability that is not related to autism. Even in that unlikely scenario, how would a parent decide which child created more stress? Some NT kids are incredibly adept at producing stress in their parents. I have some of my own...
As for dealing with the stress, there are hundreds of ways people can learn to cope. I believe that humor is great. So is physical activity. Therapy comes to mind, as does family counseling. Respite care is available in some areas. I think we are in agreement that murdering one's autistic child is a less than ideal way of coping with stress. My point about Dr. McCarron is that she had NO EXCUSE. She had been "coping" with her daughter for less than two weeks, if you count the child's arrival back in Illinois to the time of her death. Dr. McCarron was sorely disappointed with her daughter's lack of progress toward perfection. For crying out loud, she said she killed her child because Katie would not take a nap. The facts are not out yet. For all we know, Karen MCarron was adamant about pursuing biomed and her husband refused to allow it. Stranger things have happened.
So, Bill, when do you draw the line at biomed treatments? How much? How long? How much money and time? I already know the answer, I think. For some of the parents, it will never end. They admit that they will never give up. As if I have?
I will never give up on my son. He is the delight of our family. He is spoiled beyond belief, thanks to us. He is everything we could ever hope for in a boy. There seems to be a roadblock here. That if a parent does not utilize each and every biomedical intervention available, that we have somehow "given up" or "lost hope." That is completely ludicrous in its assumption.
Why is it that hope does not = acceptance?

I have no less hope than any of the biomed parents. But it's a different kind of hope, I think.
I feel sorry for the webmaster. I can just imagine the flurry of emails received after I dared to post on such hallowed ground. Indeed, it's been said more than once to me, "How dare you (fill in the blank)!" I've been scolded, put down, told to go away, dragged through the mud. It honestly does not bother me in the least. I know that we are doing what is best for my son, just as all of you believe that you are doing what is best for your children. It is pure coincidence that our methods of therapy are pain-free and cost-free.
To sum it up, Bill, we are far from hopeless, far from defeated, far from deluded. We are practical, grounded and stable (not that you aren't). We don't have to have a "what if the biomed doesn't work for our child?" contingency plan. We completely accept the autism that our son has. We do not believe that autism stole our son, and now we have to fight to get him back. He's right there in the hallway, dressed all by himself, so what if his pants and shirt are on backwards? He is a work in progress, aren't we all?

Susan'sHope
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Postby Susan'sHope » Tue Jun 06, 2006 9:47 pm

GAMAC,
I've been reading these back and forth posts for a while now and there is one thing that is laughable the same.

Parents who say that they are for acceptance repeatedly say that they are tired of people telling them that they choose to do nothing for their child and that their child will end up in a group home.

Parents who believe in biomed repeatedly say that they are tired of people telling them that they are harming their children, not being realistic and not accepting their childs autism.


I see a similar patteren here. I think we should all stop caring so much with what we think the other person is thinking. We all have different views on treatment, acceptance and the cause of autism. To have different views does not mean we have to battle one another to be right.

The deaths of these children are horrible, unforgivable and unexcusable. But to blame this craziness on a parent having to much hope or trying to hard is crazing too. Mental instabilty I think is a little mor complex than someone being stressed and trying to hard.

And GAMAC if your only big qualm with biomed (besides the ones you think are harmful) is the cost of money, then I can say for myself that money means nothing to me when it comes to the health and future of my son. I accept his ablities whatever they end up being, but biomed makes sense to me and I could not be ok with myself if I did not try.
Knowledge Without Experience Is Just Information ~ Mark Twain

Susan'sHope
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Postby Susan'sHope » Tue Jun 06, 2006 9:55 pm

GAMAC,
One more thing. I think a lot of parents who get upset with you are not upset with the way you believe, but with with the way you believe of them.

Parents who believe in biomed repeatedly say that they are tired of people telling them that they are harming their children, not being realistic and not accepting their childs autism.


I think their has been to many things said that have made people on both sides of the fence feel defensive. I know you will most likely say that you don't bash biomed, but I know I have read posts from you where you have done just that.

I'd like peace between us and a respect for one another on our individual choices on what with thinks best for our children. :)
Knowledge Without Experience Is Just Information ~ Mark Twain

LittleManzParents
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Postby LittleManzParents » Tue Jun 06, 2006 10:30 pm

^^^Perhaps the above threadS regarding extremist homophobic evangelists and company could be moved to the thread in which it originated - if it can't be dropped? ^^^^

dgdavis64
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Postby dgdavis64 » Tue Jun 06, 2006 10:32 pm

give a mouse a cookie wrote:Diane-
With all due respect, why did you post something from a different thread?

Tolerance for difference should be the status quo for parents of special needs kids, not the exception.



What do you mean "post something from a different thread?"

This was a quote from page 1 on THIS thread. You must be one of the people suffering from the "hysteria" Winnie was talking about on another thread.

I'm not going to engage in a dispute with you regarding the lies that were quoted by some homosexual website. Once I saw that the Holy Bible was being twisted, it's simply not credible. You can come back for the last word on this since I'm no longer participating in unproductive activity. I thought you "fled the sandbox" anyway. Watchout for the pussy cats.

Beware of the pharma trollbot shills posting from anonymous proxy servers

livsparents
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Postby livsparents » Tue Jun 06, 2006 10:43 pm

give a mouse a cookie wrote:Hi Bill-
There is no possible way that we can say that WE as parents of autistic children suffer more stress than parents of NT kids, or parents of kids with other disabilities. That's impossible, unless one of us happens to have an autistic child AND a child with another disability that is not related to autism. Even in that unlikely scenario, how would a parent decide which child created more stress? Some NT kids are incredibly adept at producing stress in their parents. I have some of my own...
As for dealing with the stress, there are hundreds of ways people can learn to cope. I believe that humor is great. So is physical activity. Therapy comes to mind, as does family counseling. Respite care is available in some areas.
So, Bill, when do you draw the line at biomed treatments? How much? How long? How much money and time? I already know the answer, I think. For some of the parents, it will never end. They admit that they will never give up. As if I have?
I will never give up on my son. He is the delight of our family. He is spoiled beyond belief, thanks to us. He is everything we could ever hope for in a boy. There seems to be a roadblock here. That if a parent does not utilize each and every biomedical intervention available, that we have somehow "given up" or "lost hope." That is completely ludicrous in its assumption.
Why is it that hope does not = acceptance?

I have no less hope than any of the biomed parents. But it's a different kind of hope, I think.
It is pure coincidence that our methods of therapy are pain-free and cost-free.
He's right there in the hallway, dressed all by himself, so what if his pants and shirt are on backwards? He is a work in progress, aren't we all?


Hey, he got 'em on didn't he? Thats GOOD! :wink:

I disagree that parents of autistic children cannot claim the 'stressed high ground'. I would analogize that to a mother of a toddler vs a mother of a grammar school child (NOTE, I DON'T COMPARE AGAINST A TEENAGER, I DO NOT HAVE ONE YET AND I DREAD THE NEXT COUPLE OF YEARS...BECAUSE I WILL :shock: ). You are far more likely to experience more stress chasing a toddler, dealing with night wakings, diapers, outbursts in public. I know there is a different kind of stress at all ages, but that constant grind of basic needs needing to be met is far more stressful than say, the 'average' child. Plus the 'toddler years' will last much longer in an autistic child. I cannot compare against other 'disabled' kids other than my previously mentioned burden of that 'hope' that is put forth if you are 'good and persistent'.

Personally, I draw the line at what I consider potentially dangerous to my childs health. That 'line' is different for every person. I also spend the majority of every red cent I have on 'traditional' speech, OT and ABA therapies. More precious than my money is my time, we give as much of our time and energies working with her and getting her the therapies that are identified as most likely to help her. Fortunatly, I have a few red cents leftover to pay for some biomed therapies. I feel that they also can help her to focus on recovering some of her lost abilities. I don't know why that last statement might offend, I'm sorry, but I am of the opinion that something has happenned to her brain that MAY be able to be trained back to where she can regain communication and help focus and natural abilities.

I'm glad you could find the time and/or services to provide therapies at no cost. Many to most of these people do not have that luxury. States nor the federal government will not provide PROVEN effective therapies to these children. They are then thrown into the unfortunate decision of eat, ABA, OT, ST or biomed. I don't agree but respect some who may choose biomed over other conventional therapies. I will not attempt to convince them of placing 'your bet' on treating based on a theory. It's a distinct possibility, but I need to go for the safer bet. The 'rent' is riding on it! To step out of the 'pigeon hole', I am conventional first, biomed next. I think many to most here are...

To attempt to circle this back to the topic, I do not blame dealing with autism with the murders of these poor children. I see these people as unstable to begin with and this is just the perverbial push that knocks them over. Because I see how crazy it has driven me, I can see how easily it could drive someone unstable to complete insanity. I wish all the things you mentioned above could and would be available to ALL who need them. Unfortunately, therapy in general is not valued by this country, we are less apt to 'run it off' and respite care is virtually non existent for the same reason as therapy. I wrestle with the fact that there are hundreds of other issues and diseases that this country faces; all need attention, I am unavoidably biased however.

Bill

give a mouse a cookie
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Postby give a mouse a cookie » Tue Jun 06, 2006 11:13 pm

Hi Bill-
I have three NT teenagers. Get back to me in a few years on that stress thing.... :wink:
Did you ever stay out all night? Lie to your parents? Get a ride home from the county sheriff? Go to traffic court for driving at 15 (no license)?
Have a good friend attempt suicide at 14? Have your mother stop you at the door with "you are not going out dressed like that!!" Get a suspension from school for whatever reason? Worry about your future at the age of 16?
Teenagers today are a big bundle of stress. Add an autistic child to the mix. And another youngster that needs to be the center of attention--all the time. You get the picture. BUT--it's a wild ride that I would stand in line for all over again.

LM
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Postby LM » Wed Jun 07, 2006 1:34 am

While I can't say that all of my stress is due to a specific child, it is definitely a challenge to raise #2. I would even argue that he's more difficult, however, what he gives back sort of cancels out all of the hard stuff, if that makes sense.

My autistic son is also challenging, but in different ways. Personally, I do think parents of NT kids have it easier in many ways. They don't have to install alarms and locks so their kids don't wander out of the house and down to the local pond. Yesterday I watched my neighbor chat with a friend on her front porch while her 2 1/2 yr old played in the front yard. I can't imagine what that must be like. My asd son would be in the street or heading to the pond at the nearby park. My other son would be attempting to crawl head first with bottle in mouth down the front steps. My husband and I joke that we feel more like gymnast spotters than we do parents :)

The challenges that parents of NT kids face are so different that they can't possibly be compared. They don't know what it's like to take their kids to physical therapy instead of soccer and I wouldn't expect them to. From what I've observed, parents of NT kids can put forth minimal effort and still get a lot back from their kids - by that I mean typical kids pick up language and reciprocate simply by nature. It's the opposite for parents of asd kids. It doesn't mean the gains our kids make are less significant and aren't cherished or valued, because they are (even moreso when you have a special needs child), it just takes a lot more effort on our parts.

I think acceptance is going to be different for each person on this board because we all have different kids and we all respond differently to adversity.

There is a great quote by Gordon Livingston where he says "what happens to us is not nearly as important as the attitude we adopt in response"

Lastly,
GMAC, I think you summed it up best in that you are doing what you know is best for your son

He's right there in the hallway, dressed all by himself, so what if his pants and shirt are on backwards? He is a work in progress, aren't we all?

:D :D :D :D

LittleManzParents
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Postby LittleManzParents » Wed Jun 07, 2006 7:33 am

LM - are both of your kids on the spectrum?


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