Historical Autism thought | Autism PDD
I remember watching Rain Man after the diagnosis. There was some mention of Rain Man being sent away after he put his brother in a hot bathtub? I know it is just a movie, but I remember when Gage broke Arwen's arm and tried to strangle her with a cord. I was scared to death that he would hurt her, so I just never left them alone in a room together until he had had therapy sessions with her for a year to teach him how to treat her, that she wasn't a doll, ect. I would never dream of sending him away for putting her in a hot bathtub! I know it was probably horrible (the character burned in the movie), but it made me wonder. Do you think back then they used to just send kids away for stuff like this? That makes me really sad, because Gage loves his sister and while he flips out if she touches him, he can be bribed to give her hugs and kisses with small M&Ms and stuff. He needs breaks from her sometimes, but he would be so lonely if it weren't for her. They laugh and play together (kind of LOL). I know it is hard on her sometimes, but I feel so bad for siblings who did not get to grow up with their brother or sister with Autism because they put them in institutions all the time back then.
Hope,
I know what your getting at about the sibling thing. I have a cousin that was raised and is still in a facility. I hear that she has autism although there is no way for me to really know for sure. I am not close to that part of the family and my aunt has been dead now for years. I often wonder what her siblings felt and feel about knowing that they have a sister in a facility. I wonder though if they just grew up knowing no different..you know? That same aunt has a son that looks typical fragile x. I do remember mention that she used to tell people that both of those children were dropped on their heads as babies...almost like an excuse for the way that they are. My mother never believed it...she always felt that they were both born that way but that my aunt somehow had to come up with some form of excuse or something. Just to give you an idea of the generation they were in (aunt and my mother) They would have both been in their mid to late seventies right now if both were still living. My mother had me much later in life and I am the baby of 7.
Karrie
No ... people definitely DID send kids away for "that kind of stuff," and LESS. It was the cultural norm and please believe it!
Ever seen "One Flew Over the Cuckoo's Nest?" Or "Girl, Interrupted?" I cannot tell you how many adolescents were sent off from my high school ... basically for being adolescents. In the 70's.
This is what GTTO is fighting against. Please, believe it.
It was common practice to send anyone with a disability away to a home. There were negative stigmas put on families that had a child with a disability. Very few families actually kept their kids around. Good case is JFK's sister Rosemary who was handicapped. She spent most of her life in institutions.
Info from Wikipedia, what that DR did to Rosemary should have been a crime:
http://en.wikipedia.org/wiki/Rosemary_Kennedy
Talk to the older senior citizens, you might be really surprised at what was the 'normal' thing to do when it came to dealing with the handicap. People were sent away often because the appropriate schooling/medical care was not available in their area. Whether it was a school for the blind, a school setting for the disabled, or just a warehouse hospital. Many neighborhood schools across the US refused to accept handicap kids until laws in the 1970s starting changing that. They were deemed to broken to educate so why try.
My aunt was born in the 40s and was blind from birth. My dad remembers the family sending her away in the 50s because they lived in a small town and the blind school was hours away. A bus from the blind school picked the kids up on SUnday afternoons to take them to school for the week and dropped them off again on Friday nights. The bus drove a route and you had to go to the nearest town that it stopped in to pick up your child. I can't imagine sending a small child off to school like that. But it was common.
Jana, how stomach-churning that wiki entry is! HOW did I miss knowing that -- I was from the Kennedy era!?! How dreadful.WOW. WOW. WOW.That is so horrid. I had no idea - it sounds like she was just a rebellious, mildly retarded teen sneaking out of the convent to meet boys, so they gave her lobotomy so she wouldn't end up pregnant! Probably so she wouldn't embarrass them! That is awful. I am glad you shared this though, I would like to research this subject more for an essay if the opportunity comes up in one of my classes.
Rosemary has come up in documentaries about the Kennedy family. Basicly, they all say Joseph was following the advise of Rosemary's doctors and that he thought he was doing what was best for her.
sent away (for good) for most of our history. Doctors told families there was
no hope, to just forget they ever had that child. This really did happen.
What's worse is the abuse & torture these innocent people faced. They were
guinea pigs for various medicines & medical treatments. A very dark &
disturbing part of history...and it still happens today, sadly enough. Part of
this, leads me to believe that perhaps there isn't this huge hike in cases of
PDD, but rather, more awareness & parent/doctor training combined w/
these children/adults NOT being institutionalized. Considering that the treatment for mental illness was to drill a hole in the forehead to "let the demons out", nothing is too far-fetched regarding historical treatments for things like autism. I'm sure plenty of autistic or ASD kids with behavioral problems have been beaten, sent away to foster homes and mental institutions, and abandoned. My dad used to beat me and say I was so spoiled and a brat and all my mom's friends said it was her fault for holding me and talking to me all the time. The whole "Refrigerator Mom" thing wasn't too long ago, either. To this day, I know autistic people locked away by parents financially and physically capable of caring for them. The institutions in Oklahoma are god awful--one MR girl was raped in there and the cops asked HER whether she wanted to press charges. She said no, so they dropped it. A worker got caught in the shower with an autistic boy performing oral sex on him and was fired. Sorry if these things offend, but it's going on RIGHT NOW in our society. I think people who have the luxury of obtaining a proper diagnosis, having access to special schools and treatments for their kids need to thank their lucky stars they are able to do so, because not all of us are so blessed. Go to http://www.thefamilyalliance.net/family_stories.htm Read
these stories & check out the main page, www.familyalliance.net
These are things that happened (& continue to occur) in the 90's to now--
not in the 60's & 70's.
coalitionkids - Thank you for sharing the article. I'm so glad they found one another again.[QUOTE=coalitionkids]
There is a true story article here and expands on the reality of institutions.
A Chance to Find Her
"Where's Molly?" Jeff Daly asked his parents one gray spring afternoon in 1957. The six-year-old Jeff stood staring at the empty chair where his little sister usually sat. After a brief silence, Jeff's father answered, "Molly's not here anymore, but she's fine. It's nothing for you to worry about. Forget it and eat your supper." ....
http://www.rd.com/content/sisters-keeper----the-reunion-betw een-a-man-and-his-long-lost-sister/
[/QUOTE]
That made me cry. I try very hard to understand why people used to routinely send disabled children away, not as a last resort, or because it was in the child's best interest to do so. Or even because a doctor they trusted told them this was the proper course to take.
I have to admit that it's not easy for me to understand, because Jason, while seeming to be pretty severely affected, is still my easiest child to handle. He's a very happy, content little boy, with few tantrums or self-(or other)injurious behaviors. I have my concerns about them, but he's so young that I have every hope that we will find the right intervention, or even medication later, to help him with those things. So far, he hasn't inflicted any serious harm to himself or anyone else. He's more "disruptive" than self-injurious. He's hurt me a little (kicks, punches, hair-pulling), and I watch him carefully with his brothers, but...okay, I'm just rambling on now, sorry. I guess I just have to remember that the options I have now, many parents didn't have then (in the 50's, and even up to the '90s, I guess).
This was just heartbreaking to read. I don't want to judge Molly's parents, but I have to bite my tongue pretty hard not to, especially her mother...
[QUOTE=LeAnne C]And speaking of movies or fiction, there's a book called The Memory Keeper's Daughter that touches on this archaeic,yet common practice from the 50s
In the middle of a snowstorm, a general practitioner is forced to deliver his own child since they can't get to the hospital, only as far as his office in town. As was the practice, he had his faithful nurse dose his wife with a touch of either after the most painful pushing part. He pulls the baby out and its a boy, but yo. There's another child that follows. The wife is still out when he delivers a Down syndrome girl and he has the nurse dose the Mrs again. She never sees baby number 2.
He hands the girl to the nurse and tells her to take her to the "home" across the county. The doc had a sister die on him as a young boy, and he wants to spare his wife (and himself) the agony of the heart-related death of this Downs Syndrom kid. He assumes she won't live much past childhood.
His wife has this "empty feeling" she can't put her finger on, so a couple days later, he ends up confessing there was another child - but born dead. They have a memorial service for her at the Mrs insistence. The wife never learns she has a daughter, but her entire life feels off for an unexplainable reason.
Nurse, of course, takes the baby home for a couple days, then runs far, far away to raise her as her own. And years later, the doc hears about it. His daughter is as healthy as a horse. But what does he do about her??? What about the son?
This is a pretty good book - we did it in my club.
[/QUOTE]
That sounds freally good. I'll have to propose it for my own bookclub! Thanks for sharing.
[quote]I know moms of kids with autism who are still in their teens who were told to institutionalize their kids AT BIRTH (these were extreme cases that were apparent pretty early). So that means this sort of recommendation was still being handed out until the 1990's. There DEFINITELY still are kids who are taken away from their homes because of aggression toward siblings, despite parents' objections. Violence, even violence that cannot be helped by the child, also cannot be tolerated. What you did was great and I'm glad it helped. However, sometimes it doesn't help. Or sometimes parents don't get the help. CPS WILL take a child away from a family if that child is hurting siblings. Against the parents' wishes, in some cases. I know of one family to which this happened. The boy is in permanent residential care and is, in fact, doing far better than he did at home. His brother has been given to the grandmother to raise and is doing fine, too.Yes, it's sad that some kids don't grow up with their siblings. And, certainly, that should never happen if the child can be taught to behave in a safe manner. But no mother can watch a child 24/7. Some kids get up and hurt siblings while the parents are asleep, for example. YOu are lucky you were able to get your son the intervention he needed to understand how to treat his sister. I know you would never have wanted their interaction to result in injury for either of them. [/quote].
Thank you for posting this. I did not mean to imply that children should NEVER be removed from the home. I WAS able to watch my children 24-7 because I HAD to - and I developed an anxiety disorder because of the fear and now have to take occasional medication for panic attacks. I had some help from family when I just had to get a break. But honestly, if it had gotten to the point where therapy didn't work, I would have probably sent Arwen to my parent's house before I would have sent Gage. And it would have only been temporary for example in the evenings for safety. They would still spend time together with me watching. I just think people can make it work if they want to.
But again, I think it is a case of "walk a mile in my shoes". But I know that nothing could keep me from my son, nothing! I am all he has, I know him better than anyone. He rarely even cried as a baby, I just KNEW when to feed him. We have a very strong bond and I honestly think if it came down to it, I would send my NT daughter to live somewhere else before I would send my son, because the bottom line is he NEEDS me more than she does, you know? Any even if I did have to send one of them away, where were the grandparents? Or the aunts & uncles? Didn't these people have family who would take them in?
Thank you for posting the link about the Daly's. I cried my eyes out while reading it. My daughter was looking at me like "What a weirdo" LOL What a beautiful story, so amazing that he found her again after all those years!
Wow Hope, you are a sweet and devoted Mommy.
As far as where are the other relative, our family could CARE LESS and are ZERO help with our son - ZERO! Some of them actually are embarrassed. My in laws who live far away DO NOT EVEN EVER come to see us - ever.
In the middle of a snowstorm, a general practitioner is forced to deliver his own child since they can't get to the hospital, only as far as his office in town. As was the practice, he had his faithful nurse dose his wife with a touch of either after the most painful pushing part. He pulls the baby out and its a boy, but yo. There's another child that follows. The wife is still out when he delivers a Down syndrome girl and he has the nurse dose the Mrs again. She never sees baby number 2. He hands the girl to the nurse and tells her to take her to the "home" across the county. The doc had a sister die on him as a young boy, and he wants to spare his wife (and himself) the agony of the heart-related death of this Downs Syndrom kid. He assumes she won't live much past childhood. His wife has this "empty feeling" she can't put her finger on, so a couple days later, he ends up confessing there was another child - but born dead. They have a memorial service for her at the Mrs insistence. The wife never learns she has a daughter, but her entire life feels off for an unexplainable reason. Nurse, of course, takes the baby home for a couple days, then runs far, far away to raise her as her own. And years later, the doc hears about it. His daughter is as healthy as a horse. But what does he do about her??? What about the son? This is a pretty good book - we did it in my club. I know moms of kids with autism who are still in their teens who were told to institutionalize their kids AT BIRTH (these were extreme cases that were apprarent pretty early). So that means this sort of recommendation was still being handed out until the 1990's. There DEFINITELY still are kids who are taken away from their homes because of aggression toward siblings, despite parents' objections. Violence, even violence that cannot be helped by the child, also cannot be tolerated. What you did was great and I'm glad it helped. However, sometimes it doesn't help. Or sometimes parents don't get the help. CPS WILL take a child away from a family if that child is hurting siblings. Against the parents' wishes, in some cases. I know of one family to which this happened. The boy is in permanent residential care and is, in fact, doing far better than he did at home. His brother has been given to the grandmother to raise and is doing fine, too. Yes, it's sad that some kids don't grow up with their siblings. And, certainly, that should never happen if the child can be taught to behave in a safe manner. But no mother can watch a child 24/7. Some kids get up and hurt siblings while the parents are asleep, for example. YOu are lucky you were able to get your son the intervention he needed to understand how to treat his sister. I know you would never have wanted their interaction to result in injury for either of them. There is a true story article here and expands on the reality of institutions. "Where's Molly?" Jeff Daly asked his parents one gray spring afternoon in 1957. The six-year-old Jeff stood staring at the empty chair where his little sister usually sat. After a brief silence, Jeff's father answered, "Molly's not here anymore, but she's fine. It's nothing for you to worry about. Forget it and eat your supper." .... http://www.rd.com/content/sisters-keeper----the-reunion-betw een-a-man-and-his-long-lost-sister/ Not one single one of our kids had a right to attend school before 1975. Until that time, there were no Federal laws requiring that ALL children be educated. Actually, there was ONE law that opened up the door a crack before 1975, but it was passed only two years earlier. I've told this story on this site before, but it bears retelling: ONCE UPON A TIME, in 1973, a mom in Minnesota walked down to her neighborhood school to register her daughter for kindergarten. The Principal met her at the door and said,"You can't bring her in here." "But I'm here to register her for kindergarten." "I'm sorry, Ma'am, but your little girl can't come here -- she's retarded." In tears, the mom went running to her father. She wept and wept and her Dad resolved to do something. Turns out he worked in Washington, D.C. In Congress. Right at that point in time, disabled Veterans were returning, patched up, from Vietnam. More Vets LIVED than in any other war, so LOTS of guys without limbs were returning, looking for jobs. COngress felt that it would be unfair to allow the business world to discriminate against these guys, so they were debating passing an act that would give rehabilitative support to Vets and also would require that the workplace offer reasonable accommodations to allow them to take jobs in spite of their disabilities. Congress was going to fund this mandate to the states. But this little girl's grandfather said, how can we give Vets these accommodations and at the same time deny them to school children? The Congress strongly debated this point. Many of the more Conservative legislators didn't want to OK the section about not discriminating against school children, because they thought the funding would be too costly. So they all came up with a compromise. Congress would pass this as a Mandate to the States, but the Mandate would be unfunded. That meant that the States would have to obey a non-discrimination law regarding school children, but the States would have to do it on their own nickel. The deal was struck. The Rehabilitation Act of 1973 was passed and it contained a special section pertaining to school children -- Section 504. That section is what provided the foundation for PL 94-142, the precursor to IDEA 2004. It's also why 504 is not funded. IDEA is. So that is the story of how Hubert H. Humphrey's Down Syndrome granddaughter got to go to kindergarten. THE END. A Chance to Find Her
I do not have to take meds every day, only about once a month as needed. I take Xanax. I got a little keychain medication holder that is small and childproof and waterproof. I keep 2 pills in there at all times just in case I need them. My panic attacks come out of nowhere, with no warning. I thought I was dying the first time it happened, I called 911 and was unconscious when they arrived. I was relaxing at home by myself with the kids and my last thought was that they would wake up to find me like that! It was terrifying. Now when I feel one coming on I pop the Xanax and wait a little bit and I am fine. Sometimes I go 2 months without any symptoms at all. I do find I have had a couple when I am driving on the Interstate and it is raining, but otherwise they seem to occur without any reason (except general stress I suppose).
Copyright Autism-PDD.net