Do all parents with severe ASD children want a cure?

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ASDMommyASDKid
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17 Apr 2014, 1:14 pm

cyberdad wrote:
KingdomOfRats wrote:
as for the talk of abuse in institutions, in the UK they actualy dont get away with it as easy as they used to with us,we have a institutional 'police' here called CQC who do both random and prepared visits throughout the year,they go through all the staff communication books and service user daily diaries plus they go over all moneys belonging to service users to check none of that has been abused,anything we by has to have a paper trail by law.

and the most recent abuse had suffered; sexual abuse at greenways A&T intelectual disability hospital was quickly followed up with an investigation by staff;it became a safe guarding issue so the safe guarding team got involved and now the SMART team are currently involved again as they are wanting to take it to the next stage.

any abuse have ever seen of fellow residents who have profound communication disability, have always emailed the staff or sister so they coud look into it and its always been followed up, there are many good care facilities- am living in one now and the last centre was great to.
we deserve to live as we want,and not be looked upon as burdens or suffering, simply no one can know that a person is suffering without being that person,its not for anyone else to make that decision.


It's a relief to hear this. I'm hoping that more systematic checks can be put in place to give piece of mind to families whose relatives have been put in institutions. The sad fact is extended family will more often than not opt out of making the necessary sacrifices to look after a disabled child if something happens to the parents.


^^^Yes, to all of this. I don't know if there is oversight like that in the U.S, but I hope there is. My son is verbal and I still worry about this. If anything happened to my husband and I, I don't think anyone would help our son. The only people who might would be certain relatives on my husband's side that might think they could get public assistance if they took him in. Once they saw that it was not "worth it financially," I don't know what would happen. I feel like I have to live forever.



HisMom
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17 Apr 2014, 4:34 pm

ASDMommyASDKid wrote:


^^^Yes, to all of this. I don't know if there is oversight like that in the U.S, but I hope there is. My son is verbal and I still worry about this. If anything happened to my husband and I, I don't think anyone would help our son. The only people who might would be certain relatives on my husband's side that might think they could get public assistance if they took him in. Once they saw that it was not "worth it financially," I don't know what would happen. I feel like I have to live forever.


My exact same feelings, too. I feel like there is no "retirement" for me ... And my only options are to either outlive him or to live forever.

I feel that this thread could have done with inputs from Nostromo and Claudia, who seem to no longer post here. I liked their practical approach to parenting their respective nonverbal kids, although I believe that Claudia's son is now talking and is much higher functioning now than a few years ago. Or maybe I misunderstood her situation.

I am sure that they could have expressed what I was trying to say but in a calmer, more matter - of - fact manner.

As an aside, KOR, I am very impressed by your blog and your obvious communication abilities, given your challenges. My son does not have epilepsy but his EEG is not "normal", either.

Can you share your language development please and anything that may have facilitated your ability to communicate so well ? Thank you !



cubedemon6073
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17 Apr 2014, 4:47 pm

ASDMommyASDKid wrote:
cyberdad wrote:
KingdomOfRats wrote:
as for the talk of abuse in institutions, in the UK they actualy dont get away with it as easy as they used to with us,we have a institutional 'police' here called CQC who do both random and prepared visits throughout the year,they go through all the staff communication books and service user daily diaries plus they go over all moneys belonging to service users to check none of that has been abused,anything we by has to have a paper trail by law.

and the most recent abuse had suffered; sexual abuse at greenways A&T intelectual disability hospital was quickly followed up with an investigation by staff;it became a safe guarding issue so the safe guarding team got involved and now the SMART team are currently involved again as they are wanting to take it to the next stage.

any abuse have ever seen of fellow residents who have profound communication disability, have always emailed the staff or sister so they coud look into it and its always been followed up, there are many good care facilities- am living in one now and the last centre was great to.
we deserve to live as we want,and not be looked upon as burdens or suffering, simply no one can know that a person is suffering without being that person,its not for anyone else to make that decision.


It's a relief to hear this. I'm hoping that more systematic checks can be put in place to give piece of mind to families whose relatives have been put in institutions. The sad fact is extended family will more often than not opt out of making the necessary sacrifices to look after a disabled child if something happens to the parents.


^^^Yes, to all of this. I don't know if there is oversight like that in the U.S, but I hope there is. My son is verbal and I still worry about this. If anything happened to my husband and I, I don't think anyone would help our son. The only people who might would be certain relatives on my husband's side that might think they could get public assistance if they took him in. Once they saw that it was not "worth it financially," I don't know what would happen. I feel like I have to live forever.


I think I understand now and have a better context as to what's going on not only with ASD issues but society especially America as well.



kraftiekortie
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17 Apr 2014, 5:10 pm

:D This has become a decent dialogue.



YippySkippy
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17 Apr 2014, 5:10 pm

Quote:
anyone in ireland who wants an abortion or NEEDS one otherwise they will die has to come to england to have one


Irish law allows for abortion when the mother's life is in danger. In practice, however, some hospitals are reticent either because of religious views or ignorance.
(Sorry if I'm being annoying - Ireland is one of my special interests!) :D



kraftiekortie
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17 Apr 2014, 5:17 pm

Ireland's a beautiful country. It has a great literary tradition. I wish I could go there more often. It's also a staunchly Catholic country that's fought for hundreds of years against people/nations persecuting their Catholicism.

I'm pro choice, by the way. I wish Ireland was, too. However, changing Ireland's view would really be a tough nut to crack.

I don't believe I would abort any child with disabilities: unless it is a disorder like Tay-Sachs, where the person so affected always dies in childhood (at the latest).

I don't think one could tell if a child is autistic through an ultrasound; I could be mistaken, though.



Last edited by kraftiekortie on 17 Apr 2014, 6:11 pm, edited 1 time in total.

HisMom
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17 Apr 2014, 5:53 pm

kraftiekortie wrote:
Ireland's a beautiful country. It has a great literary tradition. I wish I could go there more often. It's also a staunchly Catholic country that's fought for hundreds of years against people/nations persecuting their Catholicism.

I'm pro choice, by the way. I wish Ireland was, too. However, changing Ireland's view would really be a tough nut to crack.

I don't believe I would abort any child with disabilities: unless it is a disorder like Tay-Sachs, where the person so affected usually dies in childhood (at the latest).

I don't think one could tell if a child is autistic through an ultrasound; I could be mistaken, though.


No, you cannot predict how severe a child's disability would be, simply based on ultrasounds. But if you are pro-choice, that is what it means - the parent's right to decide if she wants to take on the care of a child whose degree of disability is completely unknown before birth.

Secondly, I think eventually there will be more advanced genetic testing that may make it possible to actually show how disabled a child will be, probably based on how the genes are expressed. Those tests, combined with amniocentesis & ultrasounds, will likely make this decision "easier" (note quotes). But I don't expect those tests to be around for at least another 20 years (but hopefully I am surprised !)



cubedemon6073
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17 Apr 2014, 6:10 pm

HisMom wrote:
kraftiekortie wrote:
Ireland's a beautiful country. It has a great literary tradition. I wish I could go there more often. It's also a staunchly Catholic country that's fought for hundreds of years against people/nations persecuting their Catholicism.

I'm pro choice, by the way. I wish Ireland was, too. However, changing Ireland's view would really be a tough nut to crack.

I don't believe I would abort any child with disabilities: unless it is a disorder like Tay-Sachs, where the person so affected usually dies in childhood (at the latest).

I don't think one could tell if a child is autistic through an ultrasound; I could be mistaken, though.


No, you cannot predict how severe a child's disability would be, simply based on ultrasounds. But if you are pro-choice, that is what it means - the parent's right to decide if she wants to take on the care of a child whose degree of disability is completely unknown before birth.

Secondly, I think eventually there will be more advanced genetic testing that may make it possible to actually show how disabled a child will be, probably based on how the genes are expressed. Those tests, combined with amniocentesis & ultrasounds, will likely make this decision "easier" (note quotes). But I don't expect those tests to be around for at least another 20 years (but hopefully I am surprised !)


https://www.youtube.com/watch?v=ZppWok6SX88



kraftiekortie
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17 Apr 2014, 6:16 pm

If the degree of disability is "unknown," then I would most definitely NOT abort the child. That child could create many wonderful things. He/she could solve the hunger problem throughout the world; he/she could find a way to get around the bureaucracy of countries whose citizens need food aid. Among many other things too numerous to list.

If the child happens to be autistic--that would be irrelevant. The end justifies the means.



HisMom
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17 Apr 2014, 6:23 pm

kraftiekortie wrote:
If the degree of disability is "unknown," then I would most definitely NOT abort the child. That child could create many wonderful things. He/she could solve the hunger problem throughout the world; he/she could find a way to get around the bureaucracy of countries whose citizens need food aid. Among many other things too numerous to list.

If the child happens to be autistic--that would be irrelevant. The end justifies the means.


I don't know what this means, or if you were being sarcastic ?

A lot of parents actually do choose to abort fetuses with Down's. Thing is, like autism, children with Down's have a wide range of abilities. Some are nonverbal and low functioning, while others are very verbal, very functional and only have some physical problems due to their chromosomal abnormality. But very few parents want to "take that chance".

Again, I just want to reiterate that being pro-choice means that a parent should have the ultimate right to decide whether or not to have that child, NO MATTER WHAT. We cannot cherry pick situations under which it is OK to abort and when it becomes maxima culpa to do so, and then state that we are pro-choice. Just saying.

This is not meant to be in judgment of anyone, as everyone's "mileage" varies. I have the greatest respect for people who willingly accept the responsibility of parenting children with severe needs (via adoption, for instance). I just am not that kind of a person, myself, although now that I am in the exact same situation, I love my son dearly and leave no stone unturned for him. He means the world to me.

BUT, had I known what I was signing up for - I would have passed. With a heavy heart. Saying so isn't in "bad taste" as cyber dad claimed, it is an uncomfortable and sad fact, but that is my honest and final say in the matter.



kraftiekortie
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17 Apr 2014, 6:27 pm

What I mean is: If a positive result is obtained by someone with autism, despite the apparent odds, the autism itself is irrelevant. That's why I wouldn't chance aborting a child with known autism, especially if the degree of disability is "unknown." No sarcasm here.

I'm glad we could have a nice dialogue. This is the only way we could come up with solutions.

We're not going to be able to come up with a way to assure World Peace here.....but it's always good to have a Socratic-type discussion.



HisMom
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17 Apr 2014, 6:31 pm

kraftiekortie wrote:
What I mean is: If a positive result is obtained by someone with autism, despite the apparent odds, the autism itself is irrelevant. That's why I wouldn't chance aborting a child with known autism, especially if the degree of disability is "unknown." No sarcasm here.

I'm glad we could have a nice dialogue. This is the only way we could come up with solutions.

We're not going to be able to come up with a way to assure World Peace here.....but it's always good to have a Socratic-type discussion.


I like Diogenes, myself ! ! :D



kraftiekortie
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17 Apr 2014, 6:35 pm

Cynicism (in the modern conception) causes a slow, meandering death. I've been a witness to it. It's deleterious to our moral fabric.

I wonder if Socrates was poisoned because he wasn't a cynic.

Anyway: I'm still glad we could have a nice, amiable discussion.



Last edited by kraftiekortie on 17 Apr 2014, 6:36 pm, edited 1 time in total.

HisMom
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17 Apr 2014, 6:36 pm

kraftiekortie wrote:
Cynicism (in the modern conception) causes a slow, meandering death.


Death comes as the ultimate end... So we aren't going to escape it by debunking cynicism.



kraftiekortie
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17 Apr 2014, 6:37 pm

I debunk it because it causes moral rot. And it smells like Gangrene.

Death is the Ultimate End; shouldn't we want it to be pleasant?



HisMom
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17 Apr 2014, 6:43 pm

kraftiekortie wrote:
Cynicism (in the modern conception) causes a slow, meandering death. I've been a witness to it. It's deleterious to our moral fabric.

I wonder if Socrates was poisoned because he wasn't a cynic.

Anyway: I'm still glad we could have a nice, amiable discussion.


Ah, now you are being cynical, my dear ! :P

As for why Socrates was killed.. He was an idealist in a less than ideal society.