To wonder how the hell parents coped with SN 50 years ago?

[slatternlymother]

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.

Youthecat - I don't want my kids catching ignorant :o

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!

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.

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.

gimme

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.