To wonder how the hell parents coped with SN 50 years ago?(256 Posts)
It is heartbreaking reading about it now. Sometimes I read thread and feel so angry on the OP's behalf.
But (and this isn't an 'oooh, think how much worse it could be!' thread), it got me to thinking how hard it must've been to have a child with say, ASD or ADHD back in the 60's.
How people must've judged! And those poor children must've been really misunderstood. I bet some of them really took a hiding for their meltdowns over things
Does anyone know anyone who parented a child with SN years ago? Or were they a child with SN?
I'd be really interested to know how things have come along. I like to think that people are better educated now. If I see a child having a meltdown, I certainly don't judge.
I think this really stems from a comment from my Dad's aunt who, years ago said 'of course, you've got all these new fangled disorders coming out of the woodwork now, it's all an excuse for badly behaved little beasts...' I have 2 cousins with ASD It's always stuck with me. That attitude must've been really rife 50 years ago.
read "The Minotaur" by Barbara Vine, heartbreaking
That will have been the attitude 50 years ago.
People were put into 'institutions'. Parents abandoned children because they didn't have the support/resources to care for them.
It must have been horrible for all concerned - the parents who didn't understand what the hell was going on and the children who were punished for being themselves.
Most kids with SNs were institutionalised 50 years ago.
I do sometimes wonder whether things have now swung too far back in the other direction - not in terms of putting kids away in institutions, but in terms of 50 years ago a child with SNs was the state's problem (dealt with very badly), but now it seems to be 100% the family's problem and they are left to cope with inadequate resources.
I think attitudes and expectations can be judged very fairly from a comment made by my kindly and genuinely caring mother, a woman born in the 30's, when the son of one of her friends, a man with learning disabilities was killed in a car crash: "oh well, it was all for her best". She didn't mean it in any nasty sense, as in "these people don't deserve to live" and she would never grudge resources. But for somebody of her generation, it was just impossible to imagine that somebody in that situation wouldn't have such a hard life that death would come as a blessed relief. Says it all really.
I used to work with adults with LD, a lot of them grew up in long stay institutions which were closed down in the 80s.
Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.
My Aunt now age 55 was only diagnosed with Autism and Aspergas aged 40
She was branded all sorts of names at school including ' lazy, lives in a dream land, never known anyone like her, weird by the other kids'
My Grandmother had a hard time too because the teachers expected her to know 'what to do with her '
My aunt was 'mentally handicapped'. Mental age of a 7 yr old. No idea what today's diagnosis was tho
She went to a special school by bus.
Twenty years older than me but god, we had great fun!
She went into a 'home' eventually, which was also great fun. She lived her life ( born in 1948) lived in a mining community where gran got sympathy and no bad remarks that I ever heard
Not 50 years ago but I'm 30 and dyspraxic. There were a few of us with undiagnosed SEN and we had to sit together at "the slow table" at school. The LEA could only afford to support a certain number of children with SEN so the schools were only allowed to refer that number of children for assessment. Everyone else had to sink or swim. One boy's parents paid for him to see an ed psyc and the teacher told the whole class that he was not dyslexic, just a lazy toad (he got a dyslexia diagnosis). There was another boy who adults used to describe as "not right in the head" who probably had ADHD and/or ASD.
My Mil has the same attitude as OP's great aunt unfortunately. She thinks it's all a load of 'new fangled nonsense'. We are going through assessments for DD2, and MiL can't understand why we can't just 'make her' do something. 'a good hiding' would soon sort her out, etc, etc. 'we didn't have this in my day' is her favourite refrain!
But even when DH was at school during the 80's he was always dismissed as stupid, lazy, thick. He is dyslexic
My mum talks about being sent to a horrific place as part of her teacher training in 1960's.
Also I suspect efforts were not made to keep children with obvious disbilities alive.
My DD was born with a physical disability. She wouldn't breastfeed and was tube fed for a few days. Can easily see how it could have been spun years ago as not feeding = failure to thrive = kinder just to let her go.
In the past many children with SN died, not through neglect, but lack of knowhow. One of my father's cousins with cystic fibroses died because there were no anti biotics or decent intensive care to treat the pnemonia he died of at the age of two. Many children with Down or CP also died because of lack of medical knowledge.
Ironically medical knowledge has increased the number of children with SN because there is neonatal intensive care. We are also having babies later in life which increases the risks of some SN.
People had bigger families and could not look after a severely disabled child if they had nine other children. Parents were expected to put their disabled children in institutions and still do in many countries. There was no other state help offered.
Its shocking to think that before the 1970s SN children were not required to have an education as they were deemed uneducatable. Attitudes have improved but there is still a long way to go. My delightful mother does not understand why ex friends are offended that she described their granson as a "mongol".
Very many children were simply put into institutions. Depending on how "enlightened" these institutions were, they were either shut away or horribly stereotyped if taken on outings. I lived near a residential establishment for adults with learning disabilities when I was a child (early 60's) and the women were all taken out for walks wearing these dreadful outfits consisting of tweed coats, little woolly berets and ankle socks. I still remember thinking how wrong this was even though I was probably too young to know why.
We had a girl who clearly had ASD when I was at (private) school too. She lasted a term - during which she received no support - before her parents were asked to remove her and send her away to somewhere "suitable". Suitable being a euphemism for out of sight, of course.
So from my experience, while the state did take responsibility more readily, it wasn't the sort of responsibility that we'd find acceptable nowadays. Neither would we accept (and quite rightly too) the overwhelming culture of shame that parents seemed to be expected to bear for having a child with additional needs.
My uncle who has scizophrenia as a child spent most of his childhood institutionalised and most of his 20s.
Ellie I'm dyspraxic too. Our school had a special needs unit and the children in there were stigmatised by everyone else. When I was 9 they tried to move me to it and I point blank refused. I still remember screaming at my teacher that I wasn't working with the stupid people, that I wasn't stupid, that theyd never make me stay there unless they chained me up. Three teachers actually tried to drag me there even lifting me off the ground. One told me I had to go in special needs because I wasn't clever enough to stay in normal class. I am sad to say I kicked two teachers and bit another and run back to my normal class and sat in my normal place. It took the head promising to let me stay where I was to calm me down.
I stayed in mainstream classes and ended up doing quite well (10 A-Cs at GCSE, 3 a levels and a degree from a russel group university) I often look back and think if I'd not put up so much resistance my life could well be very different now.
I thought they were going to tell my mum that I'd attacked the teachers but oddly enough they never did
My MIL struggled massively with DP's brother who was diagnosed with ASD as an adult. It put a huge stress on the family, they divorced, and MIL had to endure investigations into what was going on with DBIL that concluded she must be to blame (despite having DP, who is NT...!)
MIL and DBIL weren't a great combo as he needed routine and predictability and she is a very fluttery, emotional and disorganised type - but DBIL thrived much better when with his dad who was very routine-bound (perhaps on the spectrum himself). So I'd say there probably were people who worked out ways of understanding and helping in some cases. Just a lot of misunderstanding and misery too
Going back much much further dd recently read a book about Ancient Greece and was horrified to discover that ill or disabled babies would be left out in the open to see whehter or not they survived which obviously the vast majority would not.
Mil had a "spastic" child in the late 1950s who died when he was ten. Mil's mil wouldn't allow her to visit because of what the neighbours would say. When dh's eldest (living) brother started school, no one would stand near to let alone talk to mil because she had a handicapped child in a wheelchair.
People used to think having disabled children was somehow "your fault" and reflected on the family. Mil is in many ways a giant pain in the arse, but I do respect her for keeping and looking after a very disabled child when in those days families were encouraged to put them in institutions and deny their existence.
But, historically, there are examples like HeySoulSister describes, where a child with SN was embraced by the small community. I remember studying Wordsworth's poem The Idiot Boy (sorry about the title!) which is about a mother's love for her mentally disabled son, who lives with her and isn't stigmatised - one of the commentaries I read described how such children were treasured because "their soul is with god". I don't know how general or widespread that view was but at least it wasn't all horror, IYSWIM.
Our next door neighbour had a son with very bad cerebral palsy when I was a child. The answer is they didn't really cope, they existed. Their son died when he last late teens as I recall. My DM colluded with his mother at one point to fake a suicide attempt so the neighbour could get some respite care. I think kids either went into a 'home' or you got left to deal with it yourself. Imagine having to deal with a big 16 year old lad who couldn't walk, talk or feed himself and who was doubly incontinent with bugger all help. Bloody tragic.
This was 50 years ago BTW.
The danger with having a son like my own (severely autistic) was that the mothers were often blamed for the condition, so the children were forcibly removed and placed in institutions I can't imagine having ds1 forcibly refused from me, with everyone blaming me. This book describes such a case.
It must have been very isolating. I have a whole community of friends with children very similar to my son, but we met online. Almost everything of any use that I have found out wrt my son (and there have been hundreds of things) has been via friends - and online friends, rather than the professionals.
I am often incredibly grateful that ds1 was born in the internet age.
Not quite 50 years ago but at primary school in the late 60's we had a few kids who obviously had learning difficulties and a special teacher used to give them some lesson and some they had with us. I guess it is similar to nowadays.
It was actually 1986 when education became compulsory for all children. Prior to that some children with disabilities were deemed 'ineducable' and were the responsibility of health not education.
Last week there was an article in te daily mail (groan) abut SEN, te comments from DM readers was shocking. It is so sad tat people hold such horrid attitudes, I thought it would have died out by now.
My dad was born in 1944 and was regularly told he was stupid and got the cane from his teachers because he was dyslectic
I dread to think what it must have been like to have SN or parent a child with SN back then.
I remember seeing a TV programme where they said that mothers of autistic children used to be assumed to be to blame for the autism. Must have been appalling for them to be judged like that.
"The term refrigerator mother was coined around 1950 as a label for mothers of children diagnosed with autism or schizophrenia. These mothers were often blamed for their children's atypical behavior, which included rigid rituals, speech difficulty, and self-isolation.
The "refrigerator mother" label was based on the assumption that autistic behaviors stem from the emotional frigidity of the children's mothers. As a result, mothers of some children on the autistic spectrum suffered from blame, guilt, and self-doubt from the 1950s throughout the 1970s and beyond: when the prevailing medical belief that autism resulted from inadequate parenting was widely assumed to be correct.
My cousin who is now in his 40s hsa quite severe Asperger's. He was not accurately diagnosed until he was in his late twenties. He so obviously had something wrong, He has the whole deep monotone voice thing, but I do remember my mother slagging my aunt off for her parenting style. "He's just naughty". My SAINT of an aunt has spent his whole life fighting for her son. He was sectioned, put on drugs for schizophrenia, totally mis diagnosed - passed from pillar to post - one school to the next when they couldn't cope- just awful. My aunt has fought tooth and nail the whole way to get help.
My son has just been diagnosed with Asperger's too. His is not as severe as my cousin's. 'Outsiders' don;t notice it. I haven;t told the wider family yet, I need to tell my Mum before I tell my aunt - only good manners ,but I KNOW I will get full understanding and support from my aunt , and probably loads of useless suggestions from my Mum.
I am so thankful that my sons school recognises his diagnosis and are being incredibly helpful so far.
I was at primary School in the 70's.
We had the "remedial" class which seemed to house the "difficult" children and the ones who were a bit "slow"
Our class had a "difficult" boy who once held the whole class hostage (I can't remember the specifics) he came from the "home" down the road. My brother, who as an adult was diagnosed with ADD was in that same home for a whole, before transferring to an institution down south (referred to as "Boarding School" .) My Mum just couldn't cope with him
He has always coped very well, always worked, travelled, but emotionally is another story. His relationships will forever be dysfunctional I think
I think you've answered your question in your OP with your aunts lovely comment. These children would have just been known as badly behaved little beasts .
Message withdrawn at poster's request.
I have watched many documentorys of the institutes these poor souls where put in to and it was heart breaking, many run by monsters
I have AS. Mother used to beat me up and call me names. I was a slave. Luckily I had the best Gran on earth who used to rescue me at regular intervals.
I was diagnosed with Aspergers at 30 having never even heard of the condition till I was in my 20s. I was very academic and one for playing by the rules so wound up as teacher's pet at school but lived in fear of other children.
I hindsight one of my classmates obviously had ADHD and probably had a worse time from teachers but not so much other kids. His father was a policeman and his mother didn't seem the sort to not care what her little darling was up to.
I lived on a small Scottish island for a few years, and did a big of digging in the island's history. I found a census for the 50's and it said:
Mr and Mrs 'Jones', two daughters (one spastic, kept indoors).
I will never forget my shock at reading that.
My older brother was born in 1966 to my parents aged something like 21 and 22 respectively. He is very severely autistic. It took 6 years to get a diagnosis. I remember once my father took my other brother and I away to relatives and made her promise to put him into the local children's hospital for restbite. She said it was horrific and she spent all day everyday up there cos she couldn't bear to leave him alone in those conditions.
It was very tough for all of us, those years, and now he is permenantly settled incare all of us bear the scars. My parents are old beyond their years and very prone to anxiety (especially my mum).
Recently my 2 sons have been dx dyspraxic and this has thrown a lot of this up again. It's amazing the knowledge that is out there now eg sensory issues and makes me wonder how different things might have been for my db if he was young now. It all makes me very sad.
My uncle had moderate/severe dyslexia and was born in the 50s. It wasn't diagnosed though I think they knew there was an issue. He ended up being sent to lots of different schools and ran away from at least one of them, poor kid. I think my grandparents actually coped pretty well but I think it took a huge amount of effort and my uncle didn't end up with a great education really - he still struggles to write coherently even though he's done reasonably well for himself, and he has a bad stammer (the two things often go together) which he never really got any help for. Interestingly, he was very keen to sort things out for his oldest son, who is also dyslexic, and his son has gone on to do very well, is very confident and has managed to sort out most of his difficulties, so there is a positive side to it in the next generation.
I can imagine with other kinds of disability like ADHD or autism it must have been terrible. I've read accounts by or about Lorna Wing, whose daughter was born in the 50s and had autism. Wing pretty much pioneered work on autism in this country. I've got an article here that's interesting: www.guardian.co.uk/lifeandstyle/2011/may/24/autistic-spectrum-disorder-lorna-wing
My oldest brother (who would now be 50 if he'd lived) had severe hydrocephalus. So far as I can make out, when he developed breathing difficulties as a baby the hospital staff simply told my parents it would be 'kinder to let him go' and didn't try to assist him.
Very similar to MadameOvary My primary school in the 70s had the 'Remedial Class' where the children stayed right the way through school regardless of age. I don't know what special needs they had though. We all mixed together at break times and - as far as I recall - there was no segregation or name-calling by the kids.
A boy in my class probably had undiagnosed-in-those-days ADHD. He just had to try and fit in with normal lessons.
A close family member just a few years younger than me has severe (?) Down's Syndrome. He went to a 'special school' and is now in a residential institution as his parents are too old and infirm to give him the intense care he needs.
In secondary school another 'special school' saw many pupils from the area - it was called Borstal.
A lot more smacking would have gone on, I suspect.
I have 2 relatives in their very early to mid 50s who have Downs Syndrome, they are part of big families and lived at home, they did go to the local primary school and then I'm not sure. One still lives with his m but the other has survived both her parents and lives in Fold (supervised independent living)
One of my ex-boyfriends grew up in Oxfordshire in the 1960s... he was severely dyslexic but they didn't call it that back then, they just said he was 'stupid'. He was scolded and humiliated every day at school for years and years, constantly called stupid and told he would never amount to anything. He left school as soon as he could.
He never recovered from it, he spent the rest of his life struggling with depression and alcoholism. He recently took his own life at the age of 50.
Obviously a lot of things led to that but honestly, I mostly blame what happened to him at school. It scarred him for life and he never really had a chance. No matter what good things happened to him in life, he always felt like that stupid little boy.
My DS2 is 40 now.When he started school he had great difficulty learning to read and write.The teachers told me he was a ''slow reader'' and would have to learn to buck up his ideas.When he tried to write he would do mirror writing and would often go from right to left across the page.I was told it was because he was left handed
All of his words did not make sense,only he could understand them.When he got to secondary school he started playing truant because the teachers shouted at him and some of the other pupils called him a ''spacker''which in the local dialect meant mentally handicapped, as he still could not read or write properly.
He left school at 16 without any GCSEs and got a place training as a motor mechanic.He passed his driving test first time at 17, got married just before his 19th birthday, and is now father of five children.He is now a talented photographer.His reading and writing have improved over the years but is still not up to standard.He can read well now, but still struggles with written work.
I never worried too much about his IQ status as he was above average in other ways.We both now realise he is dyslexic but help for dyslexic children came too late for him it just was not recognised
I can remember mentally handicapped people and children from when I was young, people called them ''spastic or silly''.A boy who lived near me as a child was clearly mentally handicapped, he was a bit older than me and would walk round the streets grinning and talking to himself, my mother told me to keep away from him as he might hurt you.
My DH trained as a nurse of the mentally handicapped in the late 50s.He worked in a large hospital where some of the patients had been abandoned by their parents when still children, they had been told to put he or she in hospital and forget you have him or her.
Some of these unfortunate people however did get cared for by their families, people would look on the parents with pity.
I apologise for using the word mentally handicapped on here, this is what the term was then for anyone who was of low IQ.While I was doing research into family's history I came across a census report from 1891 and on it a relative of my grandfather's was entered as ''imbecile'' she was seven years old.
This is a sad thread.
In the 70's our comprehensive school had a home for people with quite severe SN next door to it and the residents (of all ages) used to come every week and do activities with us. (mostly dancing and running around the main hall)
I remember the scheme won awards for being 'progressive'
They probably wouldn't allow it now for health and safety reasons.
My very dyslexic brother was given Janet and John books to read when he was a teenager . Why would anyone ever think that would work?
I have a friend with DS who is now late 40s.
Her parents kept her at home (not the done thing) and insisted on mainstream education. They were very careful with diet and fitness. She lives semi-independently now and is very strong-willed and confident.
But I also worked with a group of women in the early 90s who were being released from a long stay ward. They came to our respite centre, 12 of them with one bin bag full of communal clothing. One woman, with moderate learning difficulties, was entirely responsible for the care of another, with PMLD. Another had no diagnosis, but had been hospitalised since birth because her mother had conceived her through rape. There were also women with conditions you never see now, cretinism for example.
The men were worse. Many had been through horrific sex abuse. One had destroyed his own eyes through repetitive behaviours. Some had literally never been out of bed. Untreated hydrocephalus, untreated scoliosis. Absolutely horrific.
I am so glad I was part of the workforce that got those people out of those hell holes and back into the community. Most of them are dead now, very often far younger than they needed to die, because even 10 years ago, in fact, even now, there are very poor attitudes towards decent treatment for those of us with SLD.
My son has HFA. I'm very glad to live in a time when he is not punished for it.
1944girl when I began working in the field, "mentally handicapped" was the progressive politically correct term. Not long before that, it was "educationally subnormal."
"imbecile" had a proper definition, as did "idiot." They were inoffensive, descriptive words, until they were abused. "Special needs" is a term of abuse now FGS!
I wonder why you all think it is so easy now?
zzzzz if you read my OP, I NEVER said it was easy now.
My severely dyslexic uncle is in his 70s. He still can't read as he was labelled stupid and left school at 13. He can write his name but his wife does everything for him. His son is also dyslexic and he got a lot of support from his school. He went to a special school until high school where they had smaller classes. Tragically he is an entitled brat so despite loads of support and good school results does nothing with his life.
Oh dawn that is so sad
Can I just clarify that in no way do I think it is easy these days? I just wondered, with people's general attitudes years ago, how bad it was then as well
My ex sister is law has a 53yr old son who was born mentally and physically disabled.he has never been able to talk at all,but he has had a happy life with parents who adored him.Now he is in a residentail care during the week ,but always goes home for the weekends.he is such a loving person who is happy as long as he has his beloved photos or a torch or similar.they have had a few problems along the way with him but have done their utmost to care for him.I really admire them.Now they are older and need looking after themselves.They have many times had abuse from others which ended up with his mum in tears.people are cruel now,but its nothing new.
I did read your OP . But the general consensus seems to be that we do a "good job" now. I wondered why that was? Why would you think I hadn't read the OP?
Because you said you wondered why everyone thinks it's so easy now.
I really don't think anyone put that across; much less meant to.
My 84 year old MIL was talking about the son of the local landed gentry (from her childhood). She described him as "stupid" and I said that wasn't a very nice thing to say about someone and we all do silly things from time to time. She replied "no, he was born stupid, he couldn't even sit up on his own". So I gently reminded her that he wasn't stupid but there must have been some kind of brain damage and she said "no, he was just stupid"
Thank goodness we are better educated than that these days.
I think many of the posts are about the "bad old days" with an im
Sorry total technology fail. I think it's impossible to discuss/consider how far we've come, without at least some understanding of where we are now.
I do think there have been some improvements to the lives of all minorities but I don't think provision in the UK is anywhere near what it should be. I think the sn boards on mn have opened my eyes to some extent. I honestly had no idea as to the kind of hurdles people faced on a daily basis, or how utterly awful some people could be.
My mum's uncle, now in his 70s has autism and pica, as does my 8yr old son.
I often wonder about how my great uncle's childhood compares with my son's. My great grandmother kept him at home and struggled on, she had a big family and became widowed but continued to care for him until she was too frail to, after which he was placed in residential care. Other children of his generation will have been placed in institutions. There was little understanding of him as a child, he was talked down to, his siblings were embarrassed about him being labelled naughty and odd at school, he had no social life or friends, was not valued as an individual.
Today in 2013 my son struggles in school, struggles with judgemental people, I struggle to care for him on my own and struggle with the reactions of ignorant people and worry what will happen to him when I am older. Not all that different from my great grandmother's experience of raising an autistic child. I'd like to say that society is more tolerant and understanding but my personal experiences tell me different. I'd like to say we are no longer judged as bad parents/ failures but although the term "refrigerator mother" has been debunked, the idea of it being down to bad parenting hasn't. There's still a long way to go.
Zzzzzz, I certainly don't think it's easy now but I was wanting to highlight the difficulty of reaching a diagnosis of autism (which virtually no one had heard of let alone understood in the 1970s) against a background of appauling or non-existent services and acusations of 'refrigerator mothers'. I am currently reading a really excellent book at the moment 'Far from the Tree' by Andrew Solomon. In it he quotes professionals working now who when they were training were called in to see an autstic child as they might never see one again.
Whilst I would never seek to belittle the undoubted struggles families are living through now I do believe we were isolated and misunderstood in a way then that maybe we would not be so much now.
Sorry I don't understand the term 'refrigerator mother'?
slatternly - I was nodding in agreement to your view that people's general attitudes had improved. And then I read the thread in AIBU. A women who struggles to get her child with ASD into school on times is being roundly and soundly roasted and told she has poor parenting skills.
I suspect that both of my boys would have been institutionalised, 50 years ago: DS1 in a correctional school. Though he would probably have been heavily sedated, too.
It doesn't bear thinking about
A respected psychiatrist or neurologist, can't remember his name posited that autistic children were a product of emotioally cold mothers ie it really was the result of child abuse/neglect and this apparently was an accepted view at the time. Imagine trying to deal with that as you wonder what has happened to your once happy, talking and responsive toddler as the signs of autism emerge.
""imbecile" had a proper definition, as did "idiot." They were inoffensive, descriptive words, until they were abused. "Special needs" is a term of abuse now FGS!"
Quite - I've just been doing some genealogical research and the 1891 census has an entire column headed 'Lunatic, imbecile or idiot' . So what was the technical difference between an 'imbecile' and an 'idiot'?
My mum died last year aged 76 and I've since realised, through reading through her files (with permission) that she clearly had dyspraxia and dyscalculia, but was just labelled stupid and clumsy by everyone - including her husband and parents. A maths teacher (this was during WW2) once threw a blackboard eraser at her for being 'slow' and cut her head open.
And I wasn't that late talking, but I simply didn't talk (from my own memories, I was selectively mute). My mum was told, in the 70s, not to expect much of me because I was probably "a bit backward".
In the 80s I was in secondary and there was a girl in my class who was looking back, obviously very ASD. She was bullied terribly. I can still see her face and am haunted by the fact that she was probably very unhappy and confused and had NO help whatsoever.
I have googled her name in case I can find something about her doing really well...or to say sorry for not helping her...but never find her.
It's probably been said but cases of ASD the mums were blamed "Refrigerator Mother" and children were removed for their own well being and parents were allowed to visit once or twice a year .
I know it's not a comparable thing, but I have really embraced my ds's dx of dyspraxia. I feel that it makes them easier to be understood/ accepted etc and would be v open about it, but maybe I am naive, maybe people will still judge/be narrow minded... how depressing.
Leo Kanner Was the name of the psychologist who coined the phrase refrigerator mother, he believed this as he often observed them seemingly being cold and aloof (apparently) there was no consideration at the time that autism often has a genetic component and the mothers may have had ASD too.
Imbecile referred to moderate LD, idiot to severe. Cretin is a specific disability caused by iodine deficiency I think. Moron referred to milder disability.
I used to have some medical textbooks that were fascinating, but horribly offensive by today's standards.
I actually think he is embarrassed of his children. They remind him of both when he was married to KK, obviously, and also when he was overweight.
He sees them as a reflection of times he wants to erase.
Fucking hell, some of these responses are heartbreaking .
DD has a friend at nursery who has speech delay, toileting and sensory processing issues and displays impulsive behaviours. Fortunately the nursery and attached school are being very supportive and he is in the process of being assessed for autism. He is adorable but his Mum finds his behaviour frustrating and exhausting, so is grateful for the support.
However his behaviour is nowhere near as frustrating or exhausting as all the people who question her as to why he is having to be held back a year and claim there is nothing wrong with him, esp his
twat of a father whose mother is clearly in denial about her son's issues.
She is constantly saying that "he just needs to learn to adapt to x and y"
I see in this child the little boy my brother used to be; sweet, loving, but easily distracted and very guarded and protective of his space. If not for the massive efforts of his mother and the school he could easily have been labelled naughty, difficult, oversensitive etc. and I'm cheering them both on.
Message withdrawn at poster's request.
My DH's grandad 'adopted' a boy in the 60s (I think); according to DH's family the boy's family essentially beat and mistreated him for being slow, DH's grandad (E) saw the boy's father giving him a beating -in a full pub- and subsequently took the father outside. The boy's Dad then said he was too much bother and that E "may as well have him".
Although he had problems with language, reading and writing E essentially took him to work with him and the boy (C) was great at picking things up visually. Because of E and my DH's family's patience and support he was able to work, live alone and generally have a great life but until then everyone, from school to his own family had written him off as slow and useless.
Not that long ago either.
Oops just realise I ended up on the wrong thread......I'm talking about Brian McFadden <<<the shame>>>
When concerns were first raised about ds via his school, no one believed it, except me, I knew he had it from the first day they told me. My H, ds's dad said I had Munchausen's by proxy. My family were in denial, in laws ridiculed me. My dd's school career ended with him being assaulted by a teacher at age 8. We had no family support whatsoever, he was just "naughty, badly brought up, it was my fault for being too soft, no rules, no discipline, spoilt, there's NOTHING wrong with him Emma! Stop making problems!". Etc etc etc. i had to go to his school every day to deal with meltdowns. It was hellish actually. I cried every day for three years.
Now it's happening all over again with dd. I'm not crying anymore though. I've the hide of a rhino these days .
Ps. Apologies if I cause any offence with the use of "slow"; that's how DH's family have always spoke of him. I have no idea of what problems he had as I never met him (sadly). He sounds a lovely, lovely man and is obviously still much missed.
It's definitely not easy now, zzzzz but at least my boys are recognised as people, with rights and personalities and a contribution to make to society, now. 50 years ago, society would have had no use for them and would not have wanted to see them.
flangledoodle your discription of times past has not changed in my experience.
I do find it difficult to understand why people consistently believe(as did I) that things have changed that significantly.
My uncle was born with with Cerebral Palsy in 1956. My grandparents looked after him themselves until he was 3. Gran was constantly bugged to "put him away" as he was "more hassle than he's worth". She did try, I'm sure she did. She talks about him with love when she does talk about him. He wasnt an easy baby and cried constantly and was incredibly heavy to carry around or even lift. I think he started having epileptic seizures from an early age too. They gave in eventually and he went to live in a hospital. They only visited once or twice a year (they moved hundreds of miles away not long after at my grandfathers insistance).
He lives in assisted housing now. As far as I know no one has ever been cruel to him although he may have been drugged a fair bit over the years. Gran has often commented that "he was such a good boy for the nurses, so quite and compliant. He was such a noisy wee one when we looked after him".
God Emma, I'm really sorry to hear that. Life can be shit can't it? Can't think of anything constructive to say but really feel for you. Families can really be the pits.
Zzzz, totally prepared to bow to your experience (sincerely meant). My experience is solely based on growing up in to 1970's with a severly autistic older brother with challenging behaviour or whom I was frequently terrified. I don't know what it is like now. Am sharing, from my perspective what it was like then. Would like to believe things are better but if people who are living it now say they are not, then they are not and I find that very sad.
zzzzzz, I worked as a teacher of teenagers with PMLD. Only 18 years before I qualified, they would have been written off as not educable at all, and institutionalised in the places I described earlier. Things are not perfect, but they are better. I'm sorry if your experiences have taught you otherwise, but I have seen people's attitudes change for the better.
There's still a large number of disablist dickheads, but they are challenged far more frequently and robustly than a few years ago.
I think the only difference is they're no longer institutionalised. Medical understanding has improved, granted, but whatever provision there is has been strangled by steadily more budget cuts. In the general population there's still ignorance and prejudice. Often there's a dogged determination to hang on to those prejudices in the face of education.
Cue "didn't see kids like that in my day".
One good thing is with the advent of the Internet I've been able to get in contact with like minded parents worldwide. Fifties parents wouldn't have that... But it's a double edged sword as others can and do get in my face with their bigotry and hate speech.
Well that surprises me saintlyjimjams as my severely handicapped relative went to a Special Needs School from the age of 5 to 16 by minibus (as someone else said) and she was born in the mid-1960s.
I recall there being schools for the 'mentally handicapped' and schools for the (Ouch) 'educationally sub-normal'. (Both in 1960s and 1970s).
I think most friends and neighbours of those severely affected were very sympathetic and supportive, being glad it had happened to them most likely.
I do remember a handful of boys at school getting into trouble a lot in 1960s and think they were dyslexic rather than ADHD/Aspergers. I do recall one girl being moved in late 1960s to a special school because she couldn't cope in mainstream. She was a twin and her twin stayed behind.
Teachers were pretty reasonable and I remember visiting 'gypsy children' not getting into trouble for leaving taps running and causing deliberate floods in the cloakrooms as the Headteacher was well-aware that to them, running water would hold a fascination.
So basically I am saying 'you youngsters' are wrong to think we all suddenly turned into better human beings overnight when Special Schools were abolished. There were always kind and enlightened people out there.
When I was little there was a Man with Downs who lived in our road. His Mum had been told when he was a baby/little to put him away as he would never "amount to much"; in fact she had to fight the system to keep him with her. There was no chance he would go to a main stream school, and she received very little help. It was only after she died that he was given support and training to live an independent life in sheltered housing.
As a teenager I had a friend with very very mild Cerebal Palsey, she had been made to attend Special Schools for her whole education until 16. They did sit some CSEs but they were a special syllabus as they weren't expected to cope with the mainstream one. Then at 16 she had to adapt to attending a mainstream FE college.
Someone else I knew was deaf, but in his case the specialist schools seemed quite good. And the only other person from the few roads I lived in who went to University was blind, but his blind schools were excellent.
However my children have been educated with children with: Autism, Downs, Cerebal Palsey, Blind, Profoundly deaf (with implants). Life may not be easy now, but I do think it is much much better than it used to be. I also hope my children will grow up to be much more accepting individuals.
Slow tables, remedial classes, institutions or left at home without education.
Although there is a school of thought that the 'learn by rote' education system of some 50 odd years ago with very strict routines and less emphasis on social knowledge and creativity, may have helped some children with ASD. Certainly my DS would I think do better in a classroom where everyone stays in their seats and chants times tables and there's there's no 'talking time' where he has to tell the class what his partner did at the weekend.
I recently watched a documentary from 1968 called Juvenile Liaison.
Tells about a dept of the police (Blackburn, Lancs). that deals with early intervention of petty crime and truancy. It was compelling and heartbreaking. You can clearly see that some of the children have learning difficulties and they were either not known or understood.
My DH is an only child, his DF would not consider any more because he had so many tantrums. Even now if things don't turn out as he imagined he rages. I feel sure he would be diagnosed today.
My Cousin who is 52 has DS her parents were told no point in trying to teach her, she is a vegetable and will not live long. She was diagnosed deaf at the age of 22 she then started to learn, she runs her own home and has a job.
Last year I was diagnosed with aspergers. Every single school report said "doesn't get on with her peers". Also the teachers kept saying to my mum "I don't understand it she has a high reading age, yet she won't read the books we give her".
From what I remember I was smacked quite a lot when I was a kid, and at secondary school suffered from depression, and was threatened with expulsion for cutting my arm. I was also told it was my fault people were being horrible to me because I wasn't "normal" and I needed to toughen up. One teacher said it was the "banter of classroom life".
Looking back I get angry!
I didn't say there was no education for those with severe disabilities before 1986 I said it wasn't compulsory.
And special schools haven't been abolished - my son attends one (thank god)
I think penelopee has it right. The venue has changed but the experience is not that enhanced.
crunchy. I think professionals believe they are doing better. I'm not sure that the clients or their families do.
I don't believe that my experience of sn is that much different from say my grandmothers would have been. But I think people believe there is a strong and effective support system out there and there isn't.
Iirc Ros Blackburn (who now lectures) says she was classed as ineducable & so came under health rather than education
It's the terminology back then that is also so shocking. My Great Aunt Bertha was known, quite casually, in the family as "Daft Auntie Bertha". She was born to a very much older mother who thought she was going through the menopause when, in fact, she was pregnant and it may well be that this contributed to Bertha's learning disabilities.
Very little interest seems to have been taken in diagnosing additional needs in those days either because on the relevant census Bertha is described as an "imbecile". She received absolutely no education but fortunately stayed out of an institution, instead, being parcelled out to various family members until my great-grandmother put her foot down and gave her a permanent loving home. Apparently my great-grandmother was the only one who could manage her but in reality, it wasn't so much management but the unconditional love that my great-grandmother showed her that made all the difference.
Not everything has changed for the better. A friend of my Mums has a daughter the same age as me (30s) who has rett syndrome and tbh her parents got far more support and respite than I have ever had with my dd (who has similar) and they were really helped along, there wasnone of the get on with it yourself mentality
Oh there is very limited support from professionals. I said a few posts ago 'thank god' that ds1 attends a special school because that is where he & we get support. I even try to access his medical care there as accessing medical services is near impossible when you have SLD's (well it is for him).
I do think the Internet has changed everything though zzzz. Because of the Internet I've never felt alone with severe autism. Without it I'd have found it all very isolating.
instead saintly we found each other and I even manage to see your gay ex boyfriend every day despite neither of us living anywhere near you...
My ds has a diagnosis of ASD & ADHD. He has an I.Q of 126. He was excluded from mainstream school at 5. Went to a fantastic Special School at7. He is in the GCSE. class for maths...he's only been in school for a year!
I've been 'advised' to put him in residential school by teachers, psychologists & family. Maybe one day i will have to.
I totally embrace my ds&his differences. I forget at times he's actually got SN, he's just ds.
I had no experience of any kind of SN before ds. I didn't even know what Autistic, really meant!
I think there is still an enormous amount of ignorance regarding SN/Autism/disability in our society.
I thought until last week i had 'educated' those closest, my family mainly about autism, ADHD & SN.
I, very sadly had a miscarriage last week. My mother&sister's reaction? Its for the best, just incase 'it' turned out like ds.
Snort please say hello to him
owl Internet friends gay ex boyfriend is fab
Yes I think Internet helps, but it's a pathetic improvement if you ask me.
Oh sorry that was to owl lady
I don't know if it's even as long as ago as the 60s that children with SEN were kept so separate. I went to school in the late 80s-early 00s and I have a very good memory for my classmates but I can't remember a single child that stands out to me as having had obvious SN (SEN yes but not ASD, ADHD etc). My primary was small but there were 120 children in my year at secondary. So where were all the children with ASD? It's a bit creepy and scary to think about it now. When I was in 6th form we had two children come into Y7 with ADHD and suddenly there was all this talk of the 'ritalin cupboard' and whispered gossip about the boy who lay down on the library floor and screamed until the headteacher came for him. This was in the year 2000 and we had never heard of ADHD! These kids must all have been somewhere ...
My dear old mum suggests a hysterectomy for me.
Sorry to hear that ShellyWelly
I think i will have to squeeze out a couple sets of twins...just to annoy them!!!
Its the implication that my ds is worthless, that gets me.
I can excuse outsiders or strangers but not my family. Give me ds any day, its the Nt's i struggle with!
shelly. that's really horrible of your family. What on earth is wrong with people?
It used to really irritate me that the question new people were always dying to know is if you knew beforehand, you know when you were pregnant as if it makes any difference to their life whether you knew or not
I have even had people say to me 'do you think it just affects your girls?' again, people who I hardly know
I think a lot of people can be ignorant. I really don't think it's changed incredibly. Look at those Cornish Councillors ad their put disabled children down comment and they cost too much etc. But then your own social worker comes round and reminds you you are spending taxpayers money, so really am I shocked?
sorry i think i have started talking to myself
and also even if you child has significant SN people STILL tut and make comment or have sharp intakes of breath at behaviours that don't even really hurt anyone else, so I actually think the level of ignorance is astounding it's just I don't notice most of it anymore because my skin is rather THICK
ReallyTired, I agree with your first post on this thread but have to pick up on one thing - you state that many SN children had no education until the 70s. This may well be true, but even so, SN children did not have to be educated to their full potential - a major inequality, that even now is not fully addressed.
Education acts stated that 'ordinary' children had to be educated to their full potential. Children with SN only had to be educated in the basic minimum of how to read and write. This was definitely still the case in the 80s, as I was one of the people who actively (and very vocally) campaigned about this. My school at the time, actively tried to force me to leave and go to a 'special' school because of my physical disability. Many of those I met who were in institutions (homes/schools) were very happy, but not educated to anywhere near their full potential.
I remember having an awful row with the SN teacher at my secondary school. We met in a corridor, he demanded to know why I wasn't in his classes. I was in top set english, and middle set maths, and he told me I should never have been put in those sets, as someone with an SN I should automatically be in bottom set with everyone else who had learning difficulties! My dyslexic friend who helped me with maths homework when I was stuck, had no way of leaving the bottom set. This wasn't the 60s, this was the late 80's, early 90's. I sincerely hope attitudes have changed - even now, some of them are beyond archaic/ignorant.
Im in my 40s and was only recently confirmed as autisic (ive known it for years) and also have had lifelong depression.
schooldays (the 70's/80's) were excruituating for me. bullied by pupils AND some teachers, accused of being lazy, gormless, (and those are the nicest words they said). and parents said same about me. If i said something was wrong i was accused of attention seeking.
Now....DC autistic/tourettes/depression amongst other things. In this day of 'enlightenment', Im blamed for her 'problems'. my fault.
yes there are more resources out there and info and services but its still embryonic as far as im concerned.
and the paralympics (at least where I live) has done NOTHING to educate people. dont think anyone round here watched them.
And look in the victorian days with the 'circus freaks', anyone with physical deformities.
Theres been a couple of Horrible History scenes that really upset me.
One about Bedlam hospital where people would go for a 'day out' and throw rotten food at the 'inmates' there, those with mental illness, plus the George lll scene.
brilliantly acted btw, so brilliant I sobbed like anything. Ignorance in medicine and help notwithstanding in those days, the King being branded with red-hot pokers, fed arsenic, shouted at...(crying typing this, picturing it).
Know what it's like to be branded a freak, as does DC.
Oh yes (some) people are still really very horrible indeed.
And ignorance is astounding - thank goodness for the Internet again
Its all about economics with the professionals. If i didn't fight very hard ds would be sitting in the worst performing mainstream school in borough with an untrained T.A.
Instead he recieves the education he deserves and requires in an independent school funded by the LEA...how did i manage to get them to pay?
They made an enormous mistake that would cost them an awful lot of money...they offered me ds school place, i didn't even ask for it.
People that are different seem to be worth less. Our society is so obsessed with productivity in every respect of the word.
I suppose I am too. Without an education what hope does ds have. My hope is if ds is educated to a good standard, he will be able to live independently. Would i leave his brothers or sisters in the worst schools? No i bloody wouldn't! Ds has the right to be treated as a human being, just as we all do.
Stormfront - what an amazing tale. It must be chilling to think the course of your life might have hung on your reaction that day.
My PIL are just like freddiefrog's there's no -one diagnosed in the family except OH's son who has dyspraxia, FIL tried to rubbish that idea less than 10 year's ago but luckily DSS is very quick witted and has a well developed "fuck you" attitude to his GPs and so responded admirably.
OH was beaten regularly for "miss behaving" and "being stupid". I don't actually think he is SN simply because he seems perfectly able to control his behavior at will, but then he could have learnt that growing up as he did. To answer the OP, parents either coped alone or DCs were sent away.
When I was in Year 3 in the 1970's, our teacher forced a boy with very poor reading ability to stand up and read in front of the whole class. He struggled and struggled to sound out the words, going red in the face and eventually tears started falling. That stupid bitch of a teacher wouldn't let him sit down until he had stumbled through the whole page, crying with frustration and embarrassment in front of his whole class. I felt so sorry for him at the time and it has only recently occurred to me that - of course - lightbulb moment - he was probably dyslexic. It's actually one of my strongest memories from my primary school days.
I really hope things have changed since then in the classroom! I'd like to give the teacher the benefit of the doubt and think that she was at her wit's end and thought trying to shame him into "trying harder" might actually work - but I can't quite forgive her for making him cry.
Oh storm force and marjprooos just wanted to say your stories are heartbreaking.
How can humans be so very cruel. No excuse. Xxx
My oldest brother was born in the 1960s. He is on the autism spectrum, undiagnosed in childhood. His school experiences were hellish. At one point my parents pulled him out of school entirely, which was virtually unheard of in those days. He was bullied relentlessly, and the schools were worse than useless. He is extremely intelligent but has never held a job. He is one of the kindest people in the world but he has never had any friends outside the family.
I often think how different his life might have been if he had been born a few decades later, when he could have received support and meaningful services. My parents were (and are) a bit ostrich-like, but I think they would have been very grateful for some help and support. I'm sure my brother could have lived up to his potential if that had happened.
Some heartbreaking stories on this thread .
I can remember lots of incidents at primary school in the 80s of children being called 'lazy', 'stupid' and 'bone idle' - both directly in front of the whole class or between staff talking well within earshot of pupils. One boy labled in this way was actually found to be severly dyslexic in Y5 and moved to a special school. Looking back, I'm sure that quite a few others had some degree of SN/SEN but had effectively been written off pretty much from when they started school.
I agree that we've still got an awful long way to go, but would hope that such ignorant and offensive namecalling wouldn't be considered acceptable by teachers now.
the body, thanx. can i say though i was glad i wasnt taken away from parents HAD i been diagnosed, wasnt a happy childhood but at least i was with family.
As for DC, I home educate her now and she does only what she can manage. some sn children can manage mainstream subjects, but some cant.
DC has learning age of a 6 year old (shes double that age) so I teach her things for that age and she progresses that way.
Love the home ed, she had a couple of good teachers at school before but now she gets exactly what she needs and can cope with.
Amazing how many of us on this post have these personal experiences, I know a lot of it IS agnorance, unless you actually have/live with/ issues it's hard to empathise and understand, but still......
It's now 2013 and my 12 yo DS has already been 'threatened' with hospitialization, so imo yes we have come a long way to an extent but no further forward for some.
Even my deaf great uncle was sent away to 'special school'
Actually zzzz I think you havent grasped how awful it was...
Things aren't good now - my son has ASD and was failed by his school and his current statement isn't meeting his needs but it has changed and I am very, very thankful that he wasn't born even 30yrs ago (when I was)
My cousin was born with a congential abnormality - I grew up with this boy and our family were supportive but his problems were not discussed at all - it's only recently, since my own sons diagnosis that my aunt & uncle have told us he has a genetic condition and autism... they did so because we needed to be screened (it was clear). I talked to my aunty about his early years recently and her opinion was that support has improved immensely, my cousin still lives at home (he will never be independent) and she said its only really changed in last 10years or so.
It was and continues to be her reality - she feels that people now don't know how lucky they are to know what we know and have the interventions that we have. As I talked to her about the basics I did with my son (structure, routines, visuals) she filled up and said 'If only I had known when he was little'...
My dad born in the 1950's (and probably ASD too!) is keen on telling me tales of children who were beaten at school for being 'thick' or 'freaks' and who ended up institutionalised for having problems with their legs (prob CP)... There were a lot of kids who just stayed home with mum and were never seen
For me though, what makes me fight for my son is that I went to primary school with a boy who now I recognise as being just like my son - he had challenging behaviour and he was awkward socially. I remember being sat with him in yr6 and he really struggled to understand instructions... we went to different secondary school but he came to mine in yr9/10 as he'd been excluded and he was excluded again before long... he ended up in prison ... he was just written off, he never had support and people referred to him as being 'thick' and 'naughty boy' even when we were 6 or 7...
Its not perfect, there is a long, long way to go but we've come a long way too.
DH (44) went through special school, he says no one bothered with them and no one asked them to do anything. Which is why I suppose he fights for our DS's who are in SS to not just be 'left'.
dayshift that is, was and is. My DS is also been failed by the system. He has down syndrome, autism, pathological demand avoidance syndrome, heart condition etc etc and has been out of his special school for over 3 year, left at home with not much support.
My grandmother tld me about someone in their town who gave birth to a baby with obvious special needs. This proably would have been in the 1920s or 30s. It was a home birth. The doctor told her to open the big drawer in the bottom of her wardrobe and put him in it, shut it and not open it again for three days. She did but as granny said, 'she couldn't stand the crying so opened it and itook him out' and then obviously had him to look after for the rest of his life which the good woman did. It was very much perceived as a huge burden and her stupidity for not letting it die. I can't tell you how much this shocked me and I can't even think about how awful the Dr was but of course to him he was doing the right thing. Attitudes to disability are changing thankfully but there is still a horrible attitude out there amongst some and still bullying happening with not enough support for carers.
Even in the early 90s, my boss knew a couple who just left their Child with Downs at the hospital (private). This was given to then as an option by the hospital.
flapping in the 90's?! Please tell me that's an exaggeration
my god at thatv drawer story?
was that common?
it more or less still is Flapping I had my DS born with DS in 2001. They were stunned I kept him. I have a niece with DS also so needed to know if my babay was to be DS and I was told if he was they would assume I was aborting.
By the sounds of this; maybe the population isn't expanding that much; maybe we're just not rejecting 'less than perfect' human beings and leaving them to rot in institutions; we're taking responsibility for them now
These stories are unbelievable. I thought I was relatively clued up about this stuff but I am so not
YY that drawer story is fucking horrific
I doubt any mother in the world could do that.
When I was in secondary school I had a friend whose younger brother was mentally and physically disabled.He had Down's Syndrome and also congenital heart disease.This was the 1950s and he was kept at home but went to a special school.I would often help my friend babysit her brother when her parents went out for the evening.He was 8 years old at the time and I remember him being quite blue in colour because of his CHD.He would get very tired just walking around the room and often short of breath.My friend's mother told me he was her baby, and that the doctors had told her he had a very bad heart but it was not worth giving him alot of treatment for it as he also had something wrong with his brain and would never be anything much.This little boy died at the age of fourteen when his heart disease eventually killed him.
That still happens 1944. My sons open heart surgery was cancelled 3 times due to someone else more worthy of life needing the space.
FIL was a paediatrician, trained in the early 1950s. He said if a baby was born with obvious Downs Syndrome, it was not unknown for them to be left to die - just put in a cot and not fed.
He is glad things have changed!
I wonder how many mothers wanted to keep their kids regardless but felt they had to do as expected and have since regretted it?
devient I also wonder how many mothers today feel that they've been abandoned. I don't know what the answer is, but I know that if I had a very disabled child, then I would have needed a LOT of help. I'm not sure I would have managed tbh, and I don't think parents should be made to feel guilty for saying 'I can't do this, it's too hard'. Does that make sense?
I don't think kids should be institutionalised of course; the idea repulses me. But the idea that your life is consumed by taking care of a severely disabled child, you can't afford to work, and have very little help? That is awful too. I'd hate to think of anyone in that situation. It must be impossible.
I know someone who had a boy with down syndrome in the 80s and she said when she went to the support group she was the only mum there that wasn't an adoptive mum
It is still fair to say though that there is a higher percentage of children with severe and complex needs who are given up for adoption fostering but of course there are also cases of families who can no longer cope and children who require a more residential setting also
My uncle was born in the 50's in Ireland. He has undiagnosed SN, I'd guess autism but complicated by a life in and out of institutions, (medical) drugs and these things caused.
He was left handed, so they tied it around his back and beat him with sticks until he learnt to write with his right.
He was beaten for rocking and tied up, also denied food. By beaten, I mean tied up and hit with sticks, clubs and whips. In a home where people were employed to do tha, in the 60's and early 70's. He still talks of it sometimes.
This was in Ireland, so in hopes of helping him the family moved here. Society got a bit less violent towards people with SN, drugs were used instead of violence. I remember him in the 80's (when I was primary school age), totally dazed and foggy and then swing to violent outbursts. Again he would be tied up and tied down, but I don't think actually hit.
Now, he lives in supported accomodation. He can use public transport and has a supported job in manufacturing, a bank account and as much independance as he feels comfortable with. He goes on holidays abroad and has friends.
His care (care provided by the state that is) has totally changed. Thank God.
Can I also just say that I'm not suggesting looking after a severely SN child is awful; I'm just suggesting that it must be massively distressing, and no one plans when they're pregnant to have a child with SN. I'd not have the first clue how to do it; it would terrify me. Reading the SN boards on here; I cannot believe the extent to which families are left 'to it'. Horrific.
Institutionalising children is not the answer; but neither is leaving SN families with barely any help.
it feels impossible, but internet makes it a bit better, online shopping, cybermates, online games, it's my lifeline.
Due to my sons needs we do lead a very isolating life and tbh I will be glad when we start to 'get it right' for him, for me to maybe have a break.
Though said earlier, I worry immensely that his heart condition does it's worse.
owl do people still 'give up' their DC to the state for adoption when they have complex care needs? I'm not judging btw, I just genuinely didnt know you could do that?
yes they do still give up, I know loads of foster parents who only take on sn
devient I'm welling up here and I'm nails and everything. Bloody hell. Can I be nosey and ask you about his needs? I ask with a wish to educate myself better about other people's lives, not to be a twat btw.
Gosh. I did not know that.
Apologies x posted over everyone!
tree Christ, that's awful. Was it along the same lines as the Magdeline Laundries?
slattern ask away, I don't mind, in fact come and spend the day
yes people still do it and yes you can still do that, I presume you can with 'normal' children too but you would face prosecution iirc
generally the state not only pays a wage to foster carers but they also generally* provide them with more respite opportunities too, whilst parents generally have to fight and fight for whatever services they can get and I find that wrong
*not in all cases, just in my experience
no Owl I agree, they do get more respite than natural parents, think its to keep them sweet
SIL is a foster parent
My gran, now 92, was a primary teacher from 1942-1981. When her 3rd dc was born she supplemented her income by teaching the "educationally sub normal" or in her words "70 plonkers" (in reference to iq)
She has told me some harrowing tales over the years, particularly of rural families who rarely encountered outsiders. She remembers with fondness a 12yo girl she taught (sum total of education and contact outside the family, one hour per week term time only) and her baby boy, sired by either the girl's father or brother. Other tales are of "naughty boys" running riot. On the other hand, in her full time career she regularly taught classes of mixed ability and age from 5-11, 50+ children to a class. She used the cane once early in her career due to bullying from a headmistress.
I've worked with people in their 50's and 60's with varying additional needs. Institutionalised, scared to leave the house, programmed to think that life = food+tv. Tales of sexual, physical and emotional abuse that make you feel sick. I've also had to work with carers who don't see a problem with this - up until 2006 it was company policy and seen as an excellent service by the regulatory body.
So yes, imo things have improved. There's still a long way to go, but a start has been made.
I don't find looking after my son distressing really (although he can have difficult days) but I do often find other people vile. However he also fast tracks me to the lovely people who are worth knowing so at least we don't have to waste time with idiots.
Thing have changed because parents have got together to change things. Initially it was slow (as described by say Lorna Wing) but the Internet has helped hugely. Both in terms of sharing what works and for quick access to finding out your rights (because you can guarantee your local authority won't be informing you of them.
It's very recent that people with DS and heart disease have been seen as worth treating. Remember Craig who won the first Big Brother used his winnings to pay for a friend's heart op in the states as she'd been refused NHS treatment because of her DS. Outrageous.
My friend found out her baby had DS while pregnant. She was put under enormous pressure to terminate (she refused).
I don't find it wrong that foster carers get paid or receive respite, I think it's wrong that parents generally don't get the same level of support. The one is a job though, i understand that
I realise I have posted something rather controversial very clumsily
Oh and for anyone who thinks we now live in enlightened times. Two words: Winterbourne View.
He lived in various places in Ireland - some government type hospitals, others run by the 'brothers'.
All equally full of absolute bastards.
Here UK they were state places and they were bastards but with guidelines..so somewhat curtailed. The 80's were a bit scary I think, because the bastards were dressed up as 'medical experts' and had big pads of prescriptions. At leastin the 50's, with a brother and a stick, you knew what the odds were and could get your kid and run for it
I think the hardest part of having a child with sn, for me, would be the idea that I had to rely and trust the expertise and motives of totally unconected strangers. Whilst knowing they had totally different motives to me.
My motives: child's happiness
Their motives: budgets, workload, protocol.
everyone is entitled to an opinon owl
wow I didn't know that saintly
devient I would be most interested!
owl well, I never knew that. What do you think about people who do give up their SN DC?
I think in severe cases, I can understand it tbh. I really wouldn't judge, I don't think. Until you're in that situation, and all that? I suppose you could argue that a foster carer might be more experienced and know what they're doing, and like you said; they might be more able to get respite care. What a choice to have to make though
I used to discuss this with my grandmother who couldn't understand why there seemed to be so much discussion over SN. She claimed it was a modern phenomenon.
When I asked about her classmates from her school, a small village one, she revealed 2 boys were always in the corridor outside the Headmasters office for behaviour problems, 'they refused to sit still and interrupted' and there was a couple of 'thick' children who never did learn to read or write!!
A cousin has a severely disabled child (unable to sit up unaided, communicate etc) and on being told he went to school each day said 'Oh, will he get his 'O levels?' (GCSES!!)' When told the reality said 'What do they teach then?' She was genuinely mystified!
My DH was 'in care' during the 1950/60s, I strongly suspect dyslexia, he has never been tested. He couldn't tell the time until mid teens when a decent teacher realised. He was put at the back of class and given crayons and left to it. There was never any attempt to teach him.
My brother who died in the late 1980s and who was born in 1969 had severe cerebal palsy due to poor care of my mum during labour,
He needed 24 hr a day care which he got from mum and dad, no respite, no special equipment, a crap wheelchair that led to spine problems.
He did attend a fairly good school thoughsonhad friends and a social life. He was bright, no intellectual impairment. He was lovely.
He couldn't even go to the pictures as deemed a fire hazard in his wheelchair! No special adaptions for public buildings either.
Mum and Dad shoukd have sued the hospital and they would have won and got enough money to provide an easier life but people didn't really sue then so we didn't.
It was tough but for all that he had a nice life and I still miss him....
And absolutely - where there are vulnerable people there will be
bastards abusers. There for one reason only.
To think differently is naive imo.
This stories on this thread is exactly the reason I have fought - and will continue to fight - for my dyslexic son.
He was born in 2003 and he has been called slow and thicko and all the rest.
I am experienced enough now to know that no one is interested in helping so I do it myself.
He is making excellent progress.
But it's entirely down to his own hard work and doing therapies at home with us.
I wish I could say things have changed wet sen, but sadly ime.
So many sad stories here
The only people I know on a personal level who have given up their children are people who either had breakdowns, could no longer physically cope, were alcoholics and had caused the issues (FAS) or had children who needed residential care and I don't judge them really. I don't know anyone who gave them up at birth/soon after on a personal level but I know people do it. I think it must be very difficult to live with actually. I know when my daughter was diagnosed I spent everyday thinking she would be better off with someone more experienced, some older (I was 22), someone richer, someone with a supportive family, someone else other than me. Everyday i got up and I felt like someone had taken out my insides, screwed them up tightly and shoved them back into me. But everyday i put one foot in front of the other and have tried to do my best for my daughter because I love her and I get far more back from our relationship than I think people on the outside realise. She is a fun girl with a great sense of humour and she has added far more to my life than she has ever took away
I was at middle school in the 1980s and ere was a boy in my class who couldn't read when we left at 14 and the teachers knew it.
They didn't give a toss.
(And neither did his parents sadly)
hugs and respect to all those who need and deserve it, some inspiration and some statements not far from my truth
My mother was a nurse and worked with autistic children in a hospital in the 1950/1960's and yes they were locked away and the parents were not encouraged to visit.
She said it was harrowing with small children hitting their heads on the wall repeatedly and being hit by staff. She left but autism was such a little understood 'malady' as it was called then.
I grew up in a village where there was a 'hospital' for the now adults of the 1960's regime and got 'used' to seeing them around but I was always traumatised by their plight.
They went through hell and it showed.
We lived in London. My brother (with severe autism) stayed at home until aged 22 when went into full-time residential care. However, as a teenager the only (?)/ most suitable school was a boarding school in Anglesea. My dad would drive him there on a Sunday night and pick him up on a Friday ecery week. My dad said he used to cry all the way home on Sundays.
see now that has reduced me to tears flang, this is exactly what they want for my DS. Now I know some do resi but I know it won't work for DS so why 'force' the issue?
Chiming in, my great grandmother had a son with downs syndrome, I never knew but read some parts of her diary and her daughter's diary which showed just how hard she fought to keep him at home in her community (east london docks iirc).
My dd has cerebral palsy caused by a mismanaged labour, im 35 and I have had people step back from me when I've told them and several ex friends who didnt want to come qnd play after she was dx. As for abandoning sick babies yes that still happens even now occasionally in NICU's where parents simply stop visiting.
I know of those who have given up severely disabled children and I know of those who have fostered or adopted SN children. I cannot judge any of them for the choices they make. We were initially told dd would be quad spastic cp and be blind and deaf, with little or no quality of life, we watched her make a remarkable recovery however I still stand by the choices I would have made.
My ds is severely autistic and in residential care. He needs 2:1 care inside and 3:1 outside because he is a danger to himself and others. He's 18 now and has been there since he was 14 and I (and his special school) could no longer cope at all. It was a just a matter of time before he hospitalised me. He came close a few times. Respite care was scant and mainly not appropriate to ds's needs as he is very violent especially around his peers. Also the disruption caused by intermittent respite meant that he was much much worse and so unsettled at home.
The staff who care for him are absolutely brilliant. I get plenty of updates about what he has been doing and see him every weekend (to take him cake and a Radiotimes). He has 2 keyworkers who have known him for a long time. It has been the best thing for him. He's had so many more opportunities and has even started his D of E Bronze award and been able to go horse riding again, which he loves.
My son is so much happier and that is what counts for me. I had so many misgivings about residential care but in the end we hit crisis point and I wish he had been able to go sooner.
I have a couple of friends in their 50s whose siblings have downs syndrome. Strangely the subject of " it was hell going out with my sibling when we were children" came up at work this morning. Zero tolerance to unusual behaviour and teasing/bullying of NT siblings seem to have been the norm from other NT children in the 60s.
devient, I have no idea what was right, I was only a child. I just remember how desperate it all was.
devient, I have no idea what was right, I was only a child. I just remember how desperate it all was.
and understable flang, I just hope to get away without it for DS, I didn't mean to offend if I have
Sorry for double post - phone playing up.
I studied this as part of my degree. Children/young adults with sn were put into institutions and most never saw their family's. the way they were treated was appalling
No offense taken devient, just reflecting that the choices parents in that position have to take are dreadful
owllady completely agree with you.
Think its fab that foster carers 'take on' sn children, well done to them, but what about us parents?
Eg-with home ed, as sn schools couldnt meet DCs needs, I pay for all books/resources, out of my carers/income support money, not a lot, but not a penny of help from the Gov, who are saving up to £19,000 a year on her education.
and btw DC had some exclusions at school, due to meltdowns, NOT bad behaviour, and this is at a sn school. I was furious with them.
nellyjelly your story's made me cry. You all have, really.
Thank god attitudes and facilities have changed for the better!
My mum's brother has special needs and we think he has undiagnosed ASD with learning disabilities. He was born in the 1950s and has had a difficult life.
After being told of what he had to endure, it is unimaginable how awful things were.
I don't really know much yet RE individual budgets but could you get one marj?
DS is also out as SS doesn't meet his needs, however the LA provide a tutor for 9 hours per week.
Tell them you are not electively doing this, it's their failure (if you feel up to it)
Thanx a lot deveient, didnt know about that. ill def look into it. My partnership with parents person is quite good, Ill ask her if she can help with that, as SW is NOT doing much...actually nothing at all.
I was told I wouldnt get financial help as I CHOSE to HE, but Ive said I HAD to end up HE as the Gov couldnt find an appropriate school. anyway, will purue this.
I love Mumsnet, we can all empathise and support each other. for everyone here.
SW won't do anything RE education, they are there socially iyswim
When DS was 1st signed off school it was with school refusal and social phobia, education were saying SS pay for help as it's 'social' phobia and SS were no you pay as it 'school' phobia, I basically called a meeting and said either way it can't go on, what happened to joined up care.
Which I do know the new individual budgets encompass, health, social and education. Sounds good in theory.
The leaving the baby in hospital is real. Actually it must have been in 1994 because I was pregnant and my MIL (actually really nice) first words to my husband who dutifully reported back to me were 'there's downs in the family. Tell her to get tested'. This made me panic a bit and mt boss told me about the neucal (sp?) fold screening that then could only be done at Kings and this about someone senior who worked at our company. As it was flyingboy does have disabilities though not Downs. Actually, the lady with downs in husband's extended family (cousins twice removed) was lovely, lived to a good age, was very able, and her parents were wonderful and must have gone through so much prejudice yet quitely bought up a wonderful woman. They went to all the family functions. I wish I could tell them now how much I admire them but I think they are all dead now.
The horror of the baby in the drawer has stayed with me. She took her baby out. How many women didn't? It gives me the willies every time I think of it. Are people looking at my gorgeous son thinking awful, Daily Mail things?
yet in 2201, all my tests came back low risk, nothing picked up in scans etc and DS born with DS, mind tbh DS was queried after they found the heart condition.
oops, I haven't even had the baby yet...........2001
Message withdrawn at poster's request.
My dad was born "normal" then contracted tb meningitus when he was 5. This left him paralysed/spastic (official diagnosis - not my words) down the left hand side of his body.
My nan and grandad fought for him, spent loads of money getting physiotherapy (in it's infancy in the 50s), private doctors and even had a spiritual healer attempt to heal him. (With some success as well!).
Then he went to a boarding school in sussex. It was a bit radical becasuse it wanted to teach disabled kids "a skill for life". Apparently they did a load of wood work, printing as well as reading/writing. Apparently they did a lot of wandering about the common, nicking apples and generally being kids. He looks back with fondness on his school days, and reckons it gave him his independance.
If he stayed at home he wouldn't of been independant as he is now.
My nan and grandad had to do a lot of chasing/defending for my dad. There were also stories about neigh ours letting his brothers watch tv at their place but not him "because they might catch something". They also told my nan to burn all his clothes and bedding.
Message withdrawn at poster's request.
I don't know about 50 years ago, but one of my cousins in 45 and autistic. Or maybe severe aspergers. I dont know because he was never diagnosed in those days.He was brought up by my uncle, a lone parent, and there just wasn't any help. He was considered "weird" and "extremely shy" and sometimes "unsocialised".
However, he was/is a maths genius and now has a very good job in computing, and his own house. I think he is pretty happy these days.
My Great-Uncle had undiagnosed SN; my Nan remembers him from growing up in the 1920s & 1930s.
He was known as 'odd' & didn't talk or have friends & relationships.
But he was accepted by the family & drove a delivery van for the family business.
He could play certain musical instruments note perfect - without ever learning to read music.
Because of fear? Because of not knowing? Because of thinking others with more experience would care better for the child you've barely got to know? Because the doctors (qnd many accept them as all knowing) are telling you that your child will not survive for long and that is something you do not want to be a part of?
I can't speak for those parents who walk away, but I can say unless you've walked in someones shoes its hard, sometimes impossible to comprehend their decision
I think it depends on what the disability etc was. Autistic children where most likely institutionalised due to the idea of cold mother syndrome. Many children with mild LDs where probably either supported by wider family and community and care for well or if not from such a community may have just got on well at a special school. many children with behaviour problems would hve lacked lots of support, been cast off as bad and probably ended up being treated for MH problems or ended up in prison. Children with sever physical disabilities and complicated health problems would simply not have thrived. Many children with phalidimide where also institutionalised.
My aunt had downsyndrom born around 50 years ago and my GM was advices to take her home and think about putting her away, as she would never walk talk or do anything for herself. my GM didn't she put in a lot of work on her own and with the help of her other daughters getting my aunt to meet her milestones just as many parents would now do.
I overheard a loud stupid woman on the Metro last year, proclaiming that she 'din't want my kid catching retarded' - because there was a child with SN in her dd's nursery.
Stupid, nasty prejudice alive and well in this day and age.
I want to offer some more positive examples of how people treated SN people in the past. Not everyone rejected those children/adults and not everyone had brutal, ignorant ideas about them either (sorry, will be long):
1) My great-grandparents ran a fruit and veg shop, which had some rooms above it. They only employed young people and adults with special needs/physical disabilities. They believed that everyone was equal and with the right support and tenderness, they could have pride in working and making a contributiojnto society. They couldn't pay them much, but they lived rent-free in those spare rooms and my great-grandmother cooked for them.
My G-grandfather was a prolific diary-keeper, and having read a lot of the entries about his staff, I think I can confidentally identify men with ASD, cerebral palsy, Down's, and others. This was between 1910-1935ish.
By coincidence, my Gran, their daughter, fell in love with a man who had been disabled by polio as a child. Unlike his own parents, who had shunned him for bringing shame on their family, and being treated like shit by much of society, they welcomed him into their family with open arms. And, well, here I am, as a result!
2) My DP had an Uncle with Down's Syndrome. His Gran married a widower with a child and their first child together had DS. She was 23, which puts paid to the notion that Ds only occurs in older mothers. The nurses and doctors asked her if she wanted them to 'take him away and sort everything out for her' - the inference being that they'd quietly kill him. They were awful to her for refusing to have him taken from her and put into a home and told her not to 'waste' her milk on him by BFing (in the end she couldn't BF, as he had problems with suckling and tongue issues).
She took him home and loved him and raised him like she would have if he had born without it. It was only an issue for other people, not for her. People were awful to him, to her, her DH and family; when they were, she cut them out of their life. She tried to get every therapy going for him, which wasn't much (he was born in 1947). The local school wouldn't take him, she fought them, won and he went. He had a part-time job in a local shop until his heart weakened in his late forties, he was famous in his village for always fronting the local summer parade and he won loads of showjumping competitions (Princess Anne sent a personal message of condolence when he died). When he died at 51, the church was standing room only and the service ended with most in tears of joy as well as sadness as the Dr Who theme tune rang out. My DP is very shy, but his Uncle was one of the few people who could bring him out of his shell.
Incidentally, she had TEN other children after he was born (Catholics, innit). That's one strong mama! Five of them went on to be SN teachers/therapists.
PS I hope my post isn't taken as me having some sort of rose-tinted idea that people were actually nice to the disabled in the past. I could fill this whole thread up just with the shit that my aforementioned disabled grandad suffered as a child
Scorpette - how fascinating - the diary sounds amazing. My grandmother sounds similar. She used to work in a cafe at the bus station & was always bringing home waifs and strays who she would give a bath, meal and bed for the night to.
She died when ds1 was young (and developed dementia around the time of his dx) which I often think was a shame as I know she would have been fiercely protective of him. I often think of her when I have to advocate for him in some way, and think how strong she would have been.
My great-great-grandmother was put into an asylum at the age of 40-something, when her youngest child was four.
She died there .
Reading through the paperwork it looks as though she probably had PND.
And more recently, dh's first job in 1978 was working in a mental hospital, "specialing" a teenage boy about the same age as him. He had to follow him around, just to keep an eye. They said he was severely mentally handicapped.
When ds1 was diagnosed with Asperger's, dh realised that this boy must have been autistic - very intelligent, but unable to cope in the real world. In those days, he was institutionalised. He's probably still there .
I am awaiting a dx for Aspergers (which seems a dead cert), and when I mentioned this to an EYFS at a bf group I attend, her reaction was "Yes, I thought you must have had an abusive childhood". WTF? And she is a professional! So if DD grows up to be like me, which is very likely, she will assume I have been abusive.
BTW, I didn't have an abusive childhood. I had a pretty good one, I just have a brain that is wired differently, as do a large proportion of my family. We always joked as kids that most of the family sounded and acted like Mr Bean....
Youthecat - I don't want my kids catching ignorant
Actually, easy they're not, but they are at least mostly immune to peer pressure.
Sorry about the EYFS, but there are idiots in all roles in society. To be fair Teacher's receive very little training in SN (about 1 day in all SEN/SN); also if she is older then she may have been exposed to the 'frigid mother" theory.
I know a child who is undergoing diagnosis; their school still see a lot of their behaviours in a very negative light, even though if you interpret them through the lens of ASD they can be seen as "special interest" and different understanding of words such as "trust".
(Do you trust an adult, you could tell if something bad happens to you? No. Because the child is saying they think an adult will get cross with them.)
Oh BTW this is in a school with quite some experience of ASD.
The real professionals, usually have better understanding.
I recall a friend having suffered the terrible loss of her baby girl shortly after birth being told "well, she'd have been a lot of trouble" (due to an undiagnosed but obvious at birth congenital disability). I remember her telling me that and screeching "how dare they, she was my trouble to deal with". Such pain. And that was in the mid-90s.
Something very similar was said to my mum who suffered a stillbirth in the 1950s.
BTW said friend was helped enormously by SANDS, and went on to become a counsellor for them, she helped a lot of families
scorpette your great grandparents sound amazing and saintly your grandmother, too.
I like to think that it's people like these that taught enough of the world to think beyond the disability to bring it to where it is today.
And I don't deny that we still have a long way to go. Just the very fact that it's assumed that the pre-natal tests for trisomy enable the planning of a convenient abortion and the amount of panic this testing arouses are a sign of that. Naturally, talk of prenatal testing for autism doesn't exactly fill me with excitement.
VikingLady - a professional what? I do wonder.
I was earnestly informed on Monday by a really nice girl I know that autistics aren't good at foreign languages, their language receptors just aren't developed enough. The thing they're really good for is computer science. She knows I'm doing a languages degree, doesn't know I'm on the spectrum. I didn't tell her. She was saying it so authoritatively but in a very gentle way, it wasn't worth telling her, you want to keep the peace! All I said was, "oh! I'm not so sure about that....I mean, you know, if you've met one Aspie, you've met one Aspie.....also language learning can be very appealing to people who crave memory based learning" and on and on with more rot, vaguely, uselessly but without challenging her. Then she went on to say, "but of course, people with Aspergers can go on to do great things!". Well, thanks very much!
People seem to tag onto buzzwords and concepts and that's it all sorted for them, and don't seem to make distinctions between the subtleties. So you might know that many autistic kids will speak late, that's pretty well known now. And, like my friend, then think that it means that they had trouble learning the language, processing it intellectually and this pattern will continue further with any other languages they want to attempt to learn later. I don't think our psychology and patterns of thought are any more sophisticated than before. As most people have said upthread, it really is about education and getting the finer points across. We just have to increase the focus on these things. Thanks for making the thread, OP.
When I was growing up I heard all about the fact that so many people in our family, on both paternal/maternal sides, ranged from severely depressed to just super-introspective, unhealthily so. Never been weird for me, and yet when I felt like such an outsider growing up, I never made the connection between them and me. The furthest I got was thinking, oh, my parents speak different languages, that's what's making me weird, or it's just me. It started with me, and I am the source. Even though I'd been well introduced to the idea of mental difficulties running in families. And I never thought I'd end up with depression, ever! I thought I'd be able to avoid all that. And I was brought up with parents who were constantly coming out with all these original insights and new ideas and drilling it into me that there were so, so many different qualities that make up a person.....and I still didn't really get it. Very little global understanding of what a mental disorder was even if I'd just about grasped the idea that extent it could take over your life.
Am slightly pissed so apologies if I'm spouting total rubbish!
Here I am again!
In 1969 I had a friend who at the time was pregnant with her first baby,as I was as well.My friend lived next door to a couple who had a mentally and physically handicapped daughter.My friend and her husband would often take this little girl out with them in the car to give her parents a break.My friend's mother was horrified by this and told her to stop doing it while she was pregnant because her unborn baby would ''catch'' the same disabilities as the little girl.
Fortunatly my friend ignored her mother's advice and went on to have a healthy baby boy.
I know someone who was born in 1979. They suffered severe brain damage due to oxygen deprivation during their birth, and also have numerous physical issues with their internal organs and skeletal structure. They were in nappies until they were about seven or so, and didn't walk until around then either. They are also epileptic.
Their mother was told by the doctors when they were only a toddler to put them in a home and forget about them Today, that person still has difficulties relating to other people at times, and does need some support, but they manage to live relatively independently.
Message withdrawn at poster's request.
People who are incredulous about babies/children being left in hospitals - where do you think children available for adoption come from? Somebody would have to give them up for adoption first, wouldn't they? Unless they are removed from the care of the parents by social services because the parents are unfit/not able to care for them, which amounts to the same thing, really.
I do understand people who do that, to be honest, especially in light of what most of you are saying about how little support is available for parents. It's only logical that not all of them will cope.
Yes, shutting babies in the bottom drawer was awful, and it should never happen again. But I'm not convinced the current "just get on with it" and "having children is a lifestyle choice, you wanted it, you deal with it" mentality is much more helpful.
I had comments about 'putting ds somewhere' when he was very young.
Quirrelquarrel, I believe my dad was on the spectrum (too many indicators to mention). Yet he was brilliant at languages and soaked them up like a sponge. After 6 months stationed in Hamburg, he was regularly mistaken for a German. Even 15 years later, he gave a tourist directions in perfect German and was asked what part of Hamburg he came from.
He also spoke Arabic, French, Italian, Cantonese, and Russian, though not fluently. Noise irritated him greatly but he was a very talented pianist and played totally by ear.
Isnt the answer better support systems being in place for those that do have severely and profoundly disabled children though, rather than us all just leaving them in hospital? If we all did that the economy would collapse I do understand the fear though but I just cannot understand how someone can go through with it, it just feels alien. But there are lots of complexities surrounding children born with sld/pmld like alcohol and drug abuse during pregnancy, parents having MLDs themselves etc etc It's not as straightforward as a happened which led to b iykwim
Youthecat and Weissdorn, I hope I didn't come accross as judgemental about residential schooling (or care) as I don't judge it at all, I know how this is the only option for some children and the right thing for them. My daughter is about to access some residential care in the 'home' next door to her sld/pmld school which tbh is a very similar thing and some of the residents are there full time as they cannot access anything else. I really do understand it's the best decision for the children and I apologise if you felt I was judging because I wasn't and in the future it looks almost certain that my daughter will have to go into residential care at some point too.
I didn't feel you were judging, but wanted to explain how fantastic residential can be when it is well run. Ds's place is at a NAS run school, so they really know their stuff.
I was born 42 yrs ago with a disability people coped my mum had too , but in regard to special needs or a learning disability I know a lot of children were undiagnosed labelled as stupid or slow and not helped or encouraged saying that I have a relative with SN and he wasn't institutionalised or 'put away' he went to a special school and lived at home with his parents he is 52,
Why would the economy collapse, Owllady? Severely disabled children cost money to the economy whether they are institutionalised or cared for at home. Some money will always have to be spent on them somehow.
I also understand what you say about it feeling "alien", but, to be honest, to someone who hasn't had to face that decision (yet), statements like that do come across a little judgemental, unless it's made clear that those would be your own personal choices in the matter and not your expectations towards others. I do think parents should be allowed a choice, and those who cannot cope should be offered an alternative, including giving up their children, if that's what they prefer, to others who are willing and able to raise them.
I vividly remember a boy in my first year at primary for his unusual behaviour. Or rather I remember the teacher punishing him. She would hit him with the long ruler and scream at him. I remember feeling so anguished and somehow understanding that he was a sad boy who needed kindness and not punishment. One day, for a reason I didn't understand, he followed me home from school and hit me over the head with his school bag. I was scared and hoping a grown up would help but even then I knew he was sad and was doing this because he liked me and needed something.
I often think of him and wonder what became of him. And wonder how differently he might have been treated today.
I have a DS at residential school as well (38 week, so he is home for school holidays and most weekends). It's definitely a brilliant place for him, he has a range of complex needs, with ASD as a primary need. The staff are specialists and the environment is tailor-made for those on the spectrum, and they are geared towards helping students become independent and economically active.
So I think special schools and residential can be a very good option, and I know the parents of many local kids who really wish there were more special school options here, as mainstream often works poorly for high functioning asd. Often young people coming out of mainstream come out with high levels of anxiety, and even if they manage to achieve academically, they have poor life skills, as these aren't taught in mainstream, so they have trouble adapting to adult life.
DS's school place was given purely on the grounds of his needs, and the impact of his needs on me/our home life was irrelevant. But it has certainly removed a lot of demands on me, and I'm now able to do normal things that many parents of children with SN can't consider doing - returning to study, having a social life, doing leisure activities, holidays. Being a carer is incredibly demanding and I can sort of understand the attitude in the past of having children cared away from home. The institutions and attitudes in the past were bad, but the current state for carers is that they are expected to pick up everything instead, with very little support offered.
A thoughtful thread. It reminds me of a time I was in Yemen, only about six years ago, on the market in the capital city Sana'a. I saw a man 'walking' a boy (his son?) through the crowds on a dog lead. The boy was about eight years old, and clearly had some severe physical and mental disabilities. He was drooling, bent over on his feet and knees, occasionally putting his hands down, as he scrambled along through the dirt, in front of the man.
As you can imagine it made me feel sick. It almost happened so quickly I literally couldn't believe my eyes, but indeed both DH and I did see it. As several posters have said, many countries in the world still treat SN children as they were in the UK decades ago, and worse.
My dd (ds's twin) had 14 years of not being able to do many 'normal' family things because her brother could not cope with the activities or changes to his routine. From about the age of 11 he wouldn't tolerate her in the living room unless we were having food. I did try my best to have time alone with dd (when ds was in bed as he'd go up at 7.30 every night though not sleep). And we'd get an hour or 2 at the weekend when their father could be bothered to look after ds.
I think she found it quite isolating with her friends too as having people over was often not an option because of ds's frequent violent outbursts. I believe she is also on the spectrum.
So many of these stories are heartbreaking and so many are inspiring. I cna track Special Needs 'provision' through the last century!
My Grandmother was a beautiful woman who ran a home, could bake anything with no recipes, ('twas a nightmare trying to learn how to cook with her saying 'put a knob of butter, a pinch of salt, a handful of flour etc - never, ever an exact amount. And eggs - 'well how big is it - how do I know how many you will need!! Anyway I digress.....) She earnt a pitiful wage working all hours in a laundry and yet kept her and my mother in a warm, loving lifestyle etc. AND she thought she was stupid - she never could read or write except for her name. She lived in an era where she worked in hard manual labour from the age of 12 years old - she was told 'at least she was good for something' as she was so strong, but she was 'thick'. My grandmother's world was confined to her home - and she was scared to venture out of it.
My Mother was told she was 'thick', put in the corner in a dunces hat, hand tied behind her becasue she was left handed and left school at 14 years to work in a factory. She has an abiding hatred of 'education' and is strangely proud of her inability to read and write. She has many mental health problems and I am sure at least some of them stem from her mother not being involved fully in the world and her own abusive experiences at school.
My mother had a son before she met my father. My half brother. He was at school in the late 60's and early 70's. All we ever heard was 'naughty boy, can't sit still, etc. He left school with no qualifications but for the first time murmurings of 'dyslexia etc' were mentioned. He was on medical drugs for a while but came of them at 14. He had all the previous problems but also ADHD.
Now there is my daughter - profoundly dyslexic, dyspraxic and has Aspergers (as well as vision problems and a bowel problem from her premature birth!)
How different. It is a struggle - she is in mainstream school and there is some bullying by isolation, but she can now write and read more at 9 years old than the last three generations of her family ever did. In some ways we are having to choose between interventions as much is being offered us.
My Grandmother, Mother and Brother never had the chance to see what talents they truly possessed - I hope my Daughter will.
PanickingIdiot, go on carers uk and read up on how much money carers save the economy. I haven't got time to explain you today
As someone who has a severely disabled child I do find it alien that people would just leave their babies in hospital yes, because I never wanted to do it myself or felt the need at the point of diagnosis. I have already acknowledged that I felt overwhelmed and distraught and I felt someone else could do better, but in hiondsight I realise that isn't or wasn't the case. I do think at the point of diagnosis there is not enough support for parents generally especially if your child has a loose diagnosis such has global development delay or has a very rare chromosome disorder or such as there often isn't even support groups. I also don't think it is fair for those to judge the quality or value of someones life by their disability or carers quality of life without having any experience of it yourself. People generally look after their children who are ill or disabled because they love them and feel they are powerful advocates for that child, not because of matyrdom
I'm not sure attitudes have changed too much. When a friends severely disabled son died 2 years ago someone actually said 'well, its for the best'. How the grieving mum didnt punch the woman I dont know. He was 9 years old and her son.
Yes, shutting babies in the bottom drawer was awful, and it should never happen again. But I'm not convinced the current "just get on with it" and "having children is a lifestyle choice, you wanted it, you deal with it" mentality is much more helpful.
Far better than I put it.
I just feel that, no one sets out to have a disabled child, do they? It isn't anyone's fault. Parents being carers for SN children saves the government a massive amount of money; therefore they should be recognised and paid as such, and given frequent respite care as often as they need it.
I think when people say that, I think they do mean well. I think they're possibly trying to recognise the parent's struggle, and what they coped with. It's the worst thing you could possibly say though; that was her son first, his disability was secondary.
You may find this as upsetting as I did.
I remember watching a television play when I was a child, about a couple whose newborn baby had spina bifida and they had to decide whether to take her home, or to leave her at the hospital to die.
The doctors weren't allowed to euthanise her so she, and others like her, would be left to starve. Mothers would be expected to go in and cuddle them to comfort them during that time
I have never forgotten it.
I remember that, but I thought they smothered her with a pillow
I was really shocked when I met my first friend with spina bifida to find out she had pretty much nothing wrong with her except for a slight limp and the need for special shoes (spina bifida being of course a hugely varied condition).
I think placing your child in resi because they need a 24 hour curriculum, or because it's the best provision for them is very very very different from walking off and abandoning them in hospital.
I find a lot of people who have no experience of severe disability don't realise we love our severely disabled children every bit as much as our non-disabled children. They're not half-human to us, even if society frequently views them that way.
No, it was the doctor who illegally smothered her when the parents eventually decided to leave her.
Every small village/town had someone who didn't quite fit in,,for the most part it was accepted and nobody bothered.
I didn't mean to imply it was the same as leaving a child in residential care and I'm so sorry if you interpreted my post in that way.
It was more in answer to the Op about how parents coped years ago.
I still find it utterly horrifying that it was considered acceptable to starve babies for being born with a special need - and even more shocking that mothers had to go in to cuddle them while it happened.
I had severe anxiety as a very little child. I will be 50 this year. I was frequently told I was spoilt, demanding, making a fuss over nothing or weak minded!
Nobody seemed to consider that the fact my dad had tried to kill himself when I was 4 and was sectioned, whilst my mother struggled to cope would have any effect on me.
I did read that in times of yore, midwives carried a hatpin for "dealing with" disabled babies, so they would be classed as stillbirths. I don't know how true this is. I hope it's not!
Tanith better that their mums cuddled them while they died than they were alone.
Tanith voluntary death by dehydration is still practised in the 'developed' world. It is still seen as causing less suffering than to let a baby with severe disabilities continue to need intensive care. Thats not a dailyfail report BTW but a real and known medical practice.
My experience is less ASD and more with children who have suffered oxygen deprivation at birth, they range from children who have mild CP to those unable to swallow, move, maintain a safe airway and suffer from constant aspiration pneumonias, epilepsy (which doesn't always respond to meds), unable to digest food so on a constant feed, months and months and months spent in childrens wards, parents having to arrange end of life care and very minimal access to respite.
Thats not to say they are loved any less or are any less or a human being but I would not in any way judge any parent or couple who opted to try to return to 'normal' life by having their child fostered or adopted.
I find the concept of giving your child away because its needs are too much for you, very difficult to feel compassionate about. The mercy killing (which. In no way condone) sits easier for me. I'm not sure why this is.
I think things have improved for more mildly disabled children, but for those with more profound disabilities, I don't think the support is really there.
^ zzzzz I agree that the support isn't there and that which is there is hard to access
I feel compassion for those who give their child up purely based on my experience, however everyone is different and everyone does make different decisions.
My grandmother's sister had Down Syndrome (my grandmother is 91). My great-grandparents were advised to send their Mongol child to an institution. They didn't: they said boldly, that is OUR daughter you are talking about. She is a gift from God and she will live here with us as any of our children would.
My grandaunt lived with her family for all of her life, moving in with her older sister when they became adults. When she died, she was 69 which was the oldest anyone in that country had been with DS at that point. It must have taken huge courage in a small, intolerant community as she was also nonverbal. I am really proud of my great grandparents for the stand they took.
My aunt had a baby with DS.
Or was mongoloid as they called it back then.
She fought to bring her home and did so, but the poor mite dies at 3 months from associated heart problems.
My aunt attempted suicide afterwards.
She never got over the loss of her little girl
I am always reminded of them both when people talk of parents of sn kids not caring or putting them "away".
Rip Lucy x
It's not all sad.
My Dad had HFA, and was born in the 1930s.
All his life he had an all-encompassing hobby that he valued above everything ( a classic one for autistic men).
He was not successful at school, he must have been beaten into submission at some point, although he never said so. He left school aged 14 to do an apprenticeship (in those days an apprenticeship was paid for by the parents) at an artisan trade which required massive attention to detail.
He worked at this trade for about 30 years before swapping to another one which required great mechanical aptitude.
He was married twice - to my mum who divorced him due to lack of affection and empathy, and to my stepmother who found him equally difficult but their marriage limped on until she died.
He eventually died earlier than he should have done as he was unable to motivate himself to manage his medical condition, even with the aid of carers - he had moved a long way away from us, and we and SS did our best.
Right up to the end of his life he carried on with his hobby, with his little band of chums who were . . . ahem . . . very similar to him.
He was never unemployed, owned his own house, lived independently, wasn't short of money, had plenty of friends, was married twice, was rarely bored (though frequently boring!), and had three daughters who loved him and miss him very much.
Pretty good really.
When I was at primary school in the 1960s there was a school adjoining us which was for children with behavioural problems. Sometimes a brick would be lobbed over ino our playground. In all my primary years I never set sight on any of the children there, they must have started and left at different times to us so we did not meet and we never had any interaction with them.
After my son was born with severe cerebral palsy I asked my mother about what happended to children with special needs when she was young. My mother was born in 1923 and grew up in rural Ireland, she remembered the policemans son had a difficult birth and he was looked after at home, staying by the fireside and rarely going out. It must have been difficult to get hold of a wheelchair and the country roads were poor. My mother had a friend who had a child with Downs syndrome in the late 1940s. This child lived to her fifties and was loved and cared for by her family and seemed to have a happy life being included in family life.
My mother worked in one of those big psychiatric institutions that closed in the 80s. It had previously been a workhouse. Here's a couple of examples:
4 brothers, all with SN, came from a farm where they had each been chained to a leg of the kitchen table. When they grew to 6ft+ they were sent to the institution.
A boy with SN had been found living in a barn with the dogs on a farm in the Dales. His father had dumped him with the aunt. It was only when she died that he was discovered, now an adult. My mother adored him.
Extract from The War and Careers for Girls, 1940:
"Teachers of the mentally defective:......there are also some openings as helpers, at a small salary, for girls of 16 and 17 in occupation centres for mental defectives, but it was considered that this might be unduly depressing for the young and that a training and experience with normal children is a better preliminary."
In the same way we are looking back now I often think when dealing with all the professionals that help my son that what is seen today as cutting edge and progress will be viewed 50 years on with hindsight as did we really do that!!"
Zeb I also worry about that. Making children learn for 5 days a week indoors for instance...I think in the future...I hope...that we may be more flexible and allow for children of ALL types to learn in the best way for them.
Some benefit from a classroom environment, some from being outdoors all day...some are academic...others artistic...I hope they will all be well catered for in the future whether they have SN, SEN or are NT.
Some really harrowing stories here
Does anyone remember an Australian film called Annie's Coming Out? My mother used to watch it quite often and I was about 8 when I first saw it. I remember thinking that there couldn't really be places like that.
working9while5 - what a lovely story. I have to admit I feel the same as zzzz and fairly unforgiving of people who give up their children (please note I do not remotely count attending resi as giving up your children - when people get to that stage it is usually putting the child first to allow resi iyswim) and it's heartwarming to think there were people able to stand up to the system even then. (I also know my tough as boots grandmother would have one that). I also find it quite inspiring tbh - and a sort of reminder that there's always been a spirit there than can inspire us, even today.
The BLack Balloon is a fab film about severe autism and there's a line in there about looking after your own which I identify strongly with (albeit recognising - perhaps more than the film does - that that can include resi)
I watched that juvenile program it was quite petting viewing.
On the other hand I think if a parent willingly gives up a child that they know they can not look after to a person who can then that is the most loving thing they can do.
I'm not even 50, and I don't remember any children with obvious disabilities at school. I suppose they were either home educated or 'put away' even in these recent times.
On the other hand, I'd be curious of there is statistical evidence regarding learning difficulties in conjunction with premature/difficult births. Medicine has moved on, and babies that would have died without intervention now live.
I am not sure they do know though if they just stop visiting the child in hospital
I'm probably a similar age to you holly, most children with disabilities in my day went to "special schools" which I didn't realise at the time were not even under the Department of Education. There was one boy who wore a Caliper on his leg at my Primary school. Some schools had a "special Unit" eg. for the deaf. Of course there were also children I was at school with, who I would hope would be diagnosed as Dyslexic or had ASD (or mental health issues as well). Some of those with hidden disabilities got some special help from "remedial" teachers, others seemed to slip through the cracks or were in constant trouble.
I am 40 Holly and I remember the Spcial School was next door but there was no attempt to intergrate the kids at all...nothing. My DD's school has strong links with the local Special Needs Primary and they visit and do activities together on a regular basis.
Their generation will be more understanding of children with difficulties.
I went to a small village school in the 1970s. I think there was rather too much integration when there was no support. Children who very obviously had problems were just lumped in with everyone else (class of 43, one teacher) and they most definitely sunk rather than swam. There was one boy who displayed quite "scary" behaviour and looking back I find it extraordinary that there didn't seem to be any intervention. I remember he was found, er, excuse the tmi here, excavating the newly-installed sanitary towel bin in the girls' loos and was caned.
Lain we also had a boy with extreme behaviour in our village school in the 70s. He used to expose himself all the time and as a result was often beaten up by older brothers etc. it's very sad to think that a 10 year old, with real SN was treated so badly. He simply didn't realise it was wrong and I don't even think it was sexual...he was a young ten.
My mum once said, 'There was none of this adhd in my day...'
I asked her, 'What about the kid at the back of the class who never joined in, rarely shut up, indulged in risky behaviour and who got sent to the headteacher a lot? He probably had ADHD.'
Mum said, 'Oh yeah...'
Join the discussion
Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.Register now
Already registered with Mumsnet? Log in to leave your comment or alternatively, sign in with Facebook or Google.
Please login first.