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Why would some people be ashmed to have an Aut spectrum baby

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lionesss
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17 Dec 2008, 10:09 pm

Padium wrote:
lionesss wrote:
MommyJones wrote:
That said, I can also understand why people would panic having a disabled child for all of the reasons that have been said. It is VERY expensive, and people don't always have resources, or they aren't educated, or their only example of autism is rainman (which is really tragic) and that scares them, they may not feel equipped or capable, or are already overwhelmed with other children or life situations that have nothing to do with ego. I would never abort my child with a disability because I can see value in everyone. This is why awareness is so very important.


And sadly many parents who have severely disabled kids have had to file bankruptcy to help their kids who are still adults that need support 24/7. It's a frightening thought, having no money and even more frightening about who will care for their child when the parents are too ill or old or, or after they are gone. And I also wish Rainman had never existed.


Holy f**** s*** before my parents knew much about my condition, they thought I could benefit from watching that movie..... All I did was fight back hatred and rage, and run to my room and cry when it was done.

Now on to disabled children. My parents find me as an AS person, even when they first found out the diagnosis, a lot easier to care for than my 13 yold brother. He is missing a lot of grey matter that he just wasn't born with, and more importantly, the bridge that connects the two halfs of the brain. Doctors figured he would be dead by 6 months, or in a wheelchair being vegetative his whole life. Reality is, he is some form of a medical miracle, because he is more normal socially than I am, and is in school, but because of how much he is missing, he lives in a very distorted world, and due to his past, only knows two emotions, contentment, and hatred. He thinks he will be able to be like me, and try to become someone working in the video game industry, even though he pretty much lets the SpEd teachers do his work for him, and is several years behind, and uses the excuse of "its not possible for me to be that smart" as a reason not to attempt any work. He also has a super rare condition (which I have, but much milder) called DBA (diamond blackfan anemia) which prevents him from making any red blood cells, so he has blood transfusions every 3 weeks (thankfully its not that bad for me, however, I could end up needing the transfusions someday, but thats very unlikely), plus because of the transfusions, he needs to be on a medicine callled dysferral which removes iron from his blood that he gets an excess of because of the transfusions. He hates to take this medicine, but if he didn't, he would die a very horrible painful death from iron poisoning. On top of that, because of his numerous things wrong with him, it is impossible to diagnose half of the crap thats wrong with him due to so many possibilities of what all his conditions could be. For the DBA, last time I heard, there was about 600 world wide, and 600 is not a typo either. And my parents would do anything for either of us, even though it just about killed them when they found out about all the conditions wrong with my brother. The fact that they still did everything they could to make sure we had a good life, that is called love. However, due to complications with family situations, and my mom being an idiot and not letting my dad get me diagnosed till she left him and he remarried a much better woman, I didn't get the help I needed till much later in life. My step mom is more of a mother to both of us than my mother was ever capable of, and my mother is probably on the spectrum, but she was never willing to ever find out any of that stuff about herself let alone get help or help her children, she loves them, but couldn't bare it... plus a whole bunch of other twisted things about her that I'm not going to get into. But the fact that my dad and step mom have done everything they possibly could to get us both the help we needed, while raising 3 other kids, is called love, and that is the bond that allows anything to happen. Some people can't handle the shock of a disabled child as well as others, and meltdown worse than an autie is generally capable of.


Thanks for sharing about your brother, thats amazing that he beat the odds like that. Does your brother have classic autism? I have never heard of the condition that you both have, must be genetic. I'm sorry your mother was not there for you but I am glad you have a good step mom. My mom always had faith in me that I would be okay even though they didn't know about autism (very few did anyway) back when I was a kid. My son is HFA and I know he will be okay too, and do something very important in his life.

All I can say is that having a child in general will shake up your world. I had post partum depression after my daughter was born and I can blame it on hormones all I want but.. the fact of the matter is, someone like me who has a hard time with change would be extremely prone to that. But in the end it was worth it. But I would imagine having a child with a serious disability would be frightening. Like I said before.. the idea of not knowing what will happen to the kids down the road is scary, because the parents will only be able to care for them for so long..

Oh yeah, as far as Rainman goes, again I wish it never existed.


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17 Dec 2008, 10:14 pm

I also wish that Rainman didn't exist, as well.


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17 Dec 2008, 10:19 pm

I liked the movie Rainman---at first. But now, like many of you, I wish it never existed. Here is what I get tired of. I tell someone I have Asperger's, a type of autism, and I often get this comment back, "you mean like Rainman?" I get so tired of that. I often respond with, "No, not like Rainman, but like Thomas Jefferson, H.G. Wells, etc." Of course that causes quite a discussion.



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17 Dec 2008, 10:20 pm

glider18 wrote:
I liked the movie Rainman---at first. But now, like many of you, I wish it never existed. Here is what I get tired of. I tell someone I have Asperger's, a type of autism, and I often get this comment back, "you mean like Rainman?" I get so tired of that. I often respond with, "No, not like Rainman, but like Thomas Jefferson, H.G. Wells, etc." Of course that causes quite a discussion.


I wouldn't even bother responding to that anymore.. I would just tell them to do a little bit of research on autism, and then walk away.


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17 Dec 2008, 10:30 pm

Yes, probably the best thing to do lionesss. Maybe they would learn more that way---if they cared enough to look. Autism is so misunderstood by the general population isn't it? I will say there are a fair amount of NTs here in this site that seem to know a lot about it. But until a person is like us, how can they ever know.

Just saw on your profile that you are an astrologer. That sounds interesting and neat. I remember this little astrology computer I had when I was a child. You plugged your birthday and the day's date into it, and it gave you these codes that you matched up in a book that told you your horoscope. Of course, that was only a game for fun---different from how astrologers would do it.



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17 Dec 2008, 10:40 pm

lionesss wrote:

Thanks for sharing about your brother, thats amazing that he beat the odds like that. Does your brother have classic autism? I have never heard of the condition that you both have, must be genetic. I'm sorry your mother was not there for you but I am glad you have a good step mom. My mom always had faith in me that I would be okay even though they didn't know about autism (very few did anyway) back when I was a kid. My son is HFA and I know he will be okay too, and do something very important in his life.

All I can say is that having a child in general will shake up your world. I had post partum depression after my daughter was born and I can blame it on hormones all I want but.. the fact of the matter is, someone like me who has a hard time with change would be extremely prone to that. But in the end it was worth it. But I would imagine having a child with a serious disability would be frightening. Like I said before.. the idea of not knowing what will happen to the kids down the road is scary, because the parents will only be able to care for them for so long..

Oh yeah, as far as Rainman goes, again I wish it never existed.


Only way my family could potentially find out exactly what mental conditions he has would be genetic testing. My parents wanted him to try ritalyn to see if it would help him focus, and I question the sanity of his pediatrician for letting him try it, against his better judgement. But it worked for him, although we can't say that he has ad(h)d or not.

Story about him: The way I figure, God really has a purpose for this kid, cuz he seems to have some form of divine blessing. At one event we were at, they had somewhat flimsy arrows that you would put the tip on your chest, and someone would steady the end with an open palm, and to show your overcomming of fear you would walk forward and break the arrow. All the arrows simply snapped in half except his, his shattered into quite a few peices. There have been a number of other similar circumstances too. Although looking at it I have had a number of "close calls", but nothing like what he has had... He was recesutated 3-5 times during his first day of life, and other things too.



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17 Dec 2008, 10:40 pm

glider18 wrote:
Yes, probably the best thing to do lionesss. Maybe they would learn more that way---if they cared enough to look. Autism is so misunderstood by the general population isn't it? I will say there are a fair amount of NTs here in this site that seem to know a lot about it. But until a person is like us, how can they ever know.

Just saw on your profile that you are an astrologer. That sounds interesting and neat. I remember this little astrology computer I had when I was a child. You plugged your birthday and the day's date into it, and it gave you these codes that you matched up in a book that told you your horoscope. Of course, that was only a game for fun---different from how astrologers would do it.


Yes I am an astrologer. Really, a perfect job for me :D And those horoscopes are always fun to read, the ones in the newspaper and the computer you were talking about. I admit those are fun!

Anyway the fact of the matter is, plenty of people will remain ignorant about autism and that may not change. If some people are that ignorant, many times they will remain that way. Some do, however change... and form an open mind, of course if something provokes it to happen. Like finding out their child or loved one has autism. But only so much awareness could be spread.. and hopefully in time it will make a little bit more of a difference. And hey, from what I have read recently, Rainman wasn't really autistic. He had savant abilities... and resembled someone like him in real life.. I think his name is Kim Peek? He developed those skills because of having a super strong long term memory, once he learned something he absorbed it for good.. but simple things he could not comprehend.


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17 Dec 2008, 10:46 pm

glider18 wrote:
I liked the movie Rainman---at first. But now, like many of you, I wish it never existed. Here is what I get tired of. I tell someone I have Asperger's, a type of autism, and I often get this comment back, "you mean like Rainman?" I get so tired of that. I often respond with, "No, not like Rainman, but like Thomas Jefferson, H.G. Wells, etc." Of course that causes quite a discussion.




That's what my ex got from his parents when he told them about me. :lol:
They wouldn't even beleive him either because he wasn't like Rainman.



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17 Dec 2008, 10:57 pm

glider18 wrote:
Yes, probably the best thing to do lionesss. Maybe they would learn more that way---if they cared enough to look. Autism is so misunderstood by the general population isn't it? I will say there are a fair amount of NTs here in this site that seem to know a lot about it. But until a person is like us, how can they ever know.

Just saw on your profile that you are an astrologer. That sounds interesting and neat. I remember this little astrology computer I had when I was a child. You plugged your birthday and the day's date into it, and it gave you these codes that you matched up in a book that told you your horoscope. Of course, that was only a game for fun---different from how astrologers would do it.


Until I accepted my diagnosis enough to look into it, there were two type of autism to me: AS, which could be light or heavey, and I reffered to as HFA (at the time I made up the term (didn't know it was actually a term) because I said it once to someone who had a child with.... can't remember what under the spectrum... and he understood me so I coined the term as a way to explain AS which noone seems to have heard of) so people actually had an idea of what it was. And there was just plain old Rainman style autsism.



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18 Dec 2008, 1:24 am

-Vorzac- wrote:
Callista wrote:
People who are NTs in an NT world, never really interacting with disabled people, don't know what it's like.


what about disabled NTs? do they not count?
Yeah, that was unclear, sorry. By "NTs who never really interact with disabled people" I meant non-disabled NTs, but I didn't make that clear.


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18 Dec 2008, 8:51 am

I remember seeing Kim Peek on a television documentary not too long ago. His father adores him and takes incredible care of him. When many parents would have given up and sent such a child to the institution (as a doctor told Kim's father to do) his father refused and made it his passion to care for him. As lionesss said, Rainman (Kim Peek---who served as the inspiration for Rainman) is not autistic. His father should serve as a role model for parents of children who are afflicted with challenging situations, whether it be autism, or whatever.

lionesss replied about rainman:

"from what I have read recently, Rainman wasn't really autistic. He had savant abilities... and resembled someone like him in real life.. I think his name is Kim Peek? He developed those skills because of having a super strong long term memory, once he learned something he absorbed it for good.. but simple things he could not comprehend."

And I did a little search on Kim Peek and found that experts consider him to have FG Syndrome---which I read about on Wikipedia. From what I understand, due to his brain damage, the two hemispheres of his brain are seperated and it's like he has two brains functioning together. I believe I recall his father explaining that Kim reads one page of a book with his left eye while he reads the other page with his right eye---at the same time!

Thanks lionesss for bringing up Kim Peek---the real Rainman. So now, when people research autism they can maybe find this out. Nice communicating with you.



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18 Dec 2008, 8:57 am

glider18 wrote:
I remember seeing Kim Peek on a television documentary not too long ago. His father adores him and takes incredible care of him. When many parents would have given up and sent such a child to the institution (as a doctor told Kim's father to do) his father refused and made it his passion to care for him. As lionesss said, Rainman (Kim Peek---who served as the inspiration for Rainman) is not autistic. His father should serve as a role model for parents of children who are afflicted with challenging situations.

lionesss replied about rainman:

"from what I have read recently, Rainman wasn't really autistic. He had savant abilities... and resembled someone like him in real life.. I think his name is Kim Peek? He developed those skills because of having a super strong long term memory, once he learned something he absorbed it for good.. but simple things he could not comprehend."

And I did a little search on Kim Peek and found that experts consider him to have FG Syndrome---which I read about on Wikipedia. From what I understand, due to his brain damage, the two hemispheres of his brain are seperated and it's like he has two brains functioning together. I believe I recall his father explaining that Kim reads one page of a book with his left eye while he reads the other page with his right eye---at the same time!

Thanks lionesss for bringing up Kim Peek---the real Rainman. So now, when people research autism they can maybe find this out. Nice communicating with you.


My brother was born without the two hemispheres connected, and a whack of grey matter missing, but he functions better than pretty much all of the severe cases of autism that make the news every now and then, plus as I mentioned earlier, hes not technically supposed to even be alive, he just beats the odds every day (now if he'd just buy me a lotto ticket). The technical term fow what my brother has is something like "Agenesis of the Corpus Collosum" if I'm spelling it right.

EDIT:

On a side note: I look forward to having a child under the spectrum someday.



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18 Dec 2008, 10:26 am

glider18 wrote:
I remember seeing Kim Peek on a television documentary not too long ago. His father adores him and takes incredible care of him. When many parents would have given up and sent such a child to the institution (as a doctor told Kim's father to do) his father refused and made it his passion to care for him. As lionesss said, Rainman (Kim Peek---who served as the inspiration for Rainman) is not autistic. His father should serve as a role model for parents of children who are afflicted with challenging situations, whether it be autism, or whatever.

lionesss replied about rainman:

"from what I have read recently, Rainman wasn't really autistic. He had savant abilities... and resembled someone like him in real life.. I think his name is Kim Peek? He developed those skills because of having a super strong long term memory, once he learned something he absorbed it for good.. but simple things he could not comprehend."

And I did a little search on Kim Peek and found that experts consider him to have FG Syndrome---which I read about on Wikipedia. From what I understand, due to his brain damage, the two hemispheres of his brain are seperated and it's like he has two brains functioning together. I believe I recall his father explaining that Kim reads one page of a book with his left eye while he reads the other page with his right eye---at the same time!

Thanks lionesss for bringing up Kim Peek---the real Rainman. So now, when people research autism they can maybe find this out. Nice communicating with you.


Thanks glider. And also from what I understand, his mother also bailed out on him at a young age. Very sad! But thank goodness his father became so involved. I also want to mention that I read a book (I wish I could remember the name, I borrowed it from a friend.. I'll ask her later and post the name then), apparently there was a woman who was literally born with half a brain, she was missing her right hemisphere and only had her left hemisphere.. that was her brain. She wasn't able to move her right side as if she had a stroke as a baby, and hardly moved her eyes. After her mother visited many drs who could not figure out what was wrong with her, she finally found a neurologist who discovered the problem. The woman was 29 at the time, living at home and was able to speak usually quite well but blurted out inappropriate words while she was under stress. She had a love for doing repetitious work.. so she worked as a file clerk, and she LOVED doing that work, the kind that would bore most people. She also became mentally stuck or, maybe emotionally stuck in reading magazines for preteens, and only would watch preteen television shows. I can't remember why that was but there was a scientific explanation for it. I think the area of the only brain that she had developed as far as it could go as that area of the brain develops when kids (more so like girls I would think) turn around 11. But even though she was born with half a brain, she received early intervention and considering what she has to work with, she turned out very well!! Anyway here is one of the many videos about Kim Peek

[youtube]http://www.youtube.com/watch?v=AfDEAIszuQI[/youtube]


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18 Dec 2008, 2:24 pm

Is this why a lot of people on here don't want kids?


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18 Dec 2008, 2:37 pm

Currently I have no wish to reproduce, but if I was to father a child I would not feel any shame if the child has AS or autism.

I would however feel some shame if the kid grew up to be some horrible little nightmare of a criminal.


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19 Dec 2008, 12:57 am

When I was 20 weeks along, my oldest sons ultrasound showed several very large Choroid Plexus Cysts(fluid filled pockets) in his brain. They were concerned, because of the size of the cysts. They did another scan at 32 weeks and they were no longer noticable on the scan. It didn't matter what they found, This was my baby, and he deserved to live, even though some had different thoughts. He is now my sweet 8 year old son, with aspergers and tourettes. When I found out I was pregnant with my second son, the Dr. wanted to refer me to genetic counceling. I asked "Why now?". I was already pregnant. Shouldn't she have done the refering when I said I wanted to have a second child?(took 3 years to concieve).