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a chance for the SN community to tell you how it really is and to tell you the horrid stuff they have to deal with

492 replies

2shoes · 17/04/2012 11:02

all the time..
after the horror of the other thread, I think it would be good for the sn community on mn to tell their stories, when they have been harassed/assaulted/ and abused by the nt world.
night help to put a couple of minor incidents that someone in the nt world has had to put up with for a very short space of time.

so I will start ....
we were subjected ot haye crime for 5 years....why because my ds fell out with them when they called my dd a spaz.
we can't go out without the staring...small children blocking out way in the shop, whilst mummy/daddy does nothing, just so their child can stare at dd, who is shock horror in a wheelchair.
my son was bullied at school by nt kids who took delight in calling dd a spaz.

mie are minor compared with most.

OP posts:
insanityscratching · 17/04/2012 12:22

Peachy oh yes the envy of a child having TA support. I got told it wasn't fair that ds went to school in nappies, it wasn't fair that ds went into school by the exit instead of queuing with everyone else, it wasn't fair that on trips he had constant 1 to 1 and their child was one of a group of four, it wasn't fair that he didn't go through the reading scheme like everyone else (he could read a newspaper at two)
Perhaps it wasn't fair ds had autism but didn't see anyone wanting to swap places.

ThisWeekonFancyPuffin · 17/04/2012 12:22

That you get to sit in meetings and write long letters or fill in forms. You get the joy of spending that time listing your child's difficulties and behavioural issues.

It is soul destroying. My daughter is my favourite person in the world and a total joy, and I sit and have to list. Every. Single. Issue.

You know that instinct to protect your child and be positive all the time, go against that. It's awful. Then you get the report back and have to read someone else's opinion on your child. You know when you get a negative school report for your child and it hurts? That.

People who tell me my dd can't have autism (accompanied by this Hmm face) as she smiles or better not to worry as she will be great with numbers.

She is awesome though Smile

Kladdkaka · 17/04/2012 12:23

Just wanted to add, all of the abuse, glares, comments tuts and general vileness I've experienced as an adult with SN has been in England. I have only every been on the receiving end once here in Sweden at that was from another Brit.

couldimaybe · 17/04/2012 12:24

given the layers of crap help shit-- beauracracy I am facing, I feel so sorry for you, having to deal with it, on an ongoing, long term, basis.

dottyspotty2 · 17/04/2012 12:25

I was also told all DS needed was a good hiding by my father yes that would cure it on the one occasion they watched him when DH had a neourology appointment (couldn't take DS as we tried and got asked to leave the hospital) thay said it was all DD2's fault as he was good as gold and went hyper as soon as she walked in yes because he had 100% attention and wasn't bad then poor DD2 was only 3 at the time he was 4.

dottyspotty2 · 17/04/2012 12:27

TA support doesn't mean they get what their entitled to the 18 months DS was in part-time mainstream his want allowed to do her job if we wanted him in mainstream he would behave like every other child mmmm

2old2beamum · 17/04/2012 12:29

Much better thread you are kind and understanding. I think having SN children makes you far more tolerant towards humanity another upside to SN Smile
2shoes Thanks

mummylin2495 · 17/04/2012 12:31

My nephew is now an adult and he is mentally and physically disabled.I have seen my sis in law many times be in tears because of the horrible things that people have said about him in her hearing.he has no speech or understanding and cant really do anything, but he is such a loving and loved person.I know what a hard task that parents have with a child with SN.I raise my hats to you all.there is so much ignorance around and so many ignorant.

missmaviscruet · 17/04/2012 12:32

This reply has been deleted

Message withdrawn at poster's request.

lancelottie · 17/04/2012 12:36

On the whole we've been lucky, and met with a lot more unexpected understanding and kindness than hostility, but:

DD starting school and proudly pointing out her beloved Big Brother to a classmate, to be told, 'Oh yeah, the weirdo. DD is the weirdo's sister!'

My dad yelling 'What the hell is WRONG with you, boy?' at DS. Yes, post-diagnosis, indeed post-statementing.

My mum, actually deciding I would like to know that she 'looks at the baby photos sometimes and cries, because they are before he went all weird.' No mum, he didn't 'go weird', he's autistic and finds some situations intolerable.

Currently, the lack of a social life for him (he's 16) is the big, constant, background worry. He would like someone to go to the cinema with, to hang around in the street, to see and chat to. He doesn't currently have ANY friends, boy or girl, with whom he could do this, and by this age, I can't make the arrangements for him.

And he wants to grow up to have a proper family life. How on earth do I help him come anywhere near that, when he can't read social cues, can't use the phone, can't introduce himself to people?

But as I say, we have had it relatively easy once the bastard OCD was under control and we could leave the house which only took two years of waiting

Peachy · 17/04/2012 12:37

I;ve always tried to be tolerant but I am much more forward about helping people now- I see my boys and if I was not there.

I guess I forgot that ime my BIL advocated euthanasia as a way of dealing with disabled people 9'we can't afford them') in front of the boys. DS3 didn't understand, ds1 did but having more confidence than me wrote him off as an idiot. It ended with me having a mini breakdown though.

Peachy · 17/04/2012 12:40

Insanity yes the it's not fair bunch!

I have been told twice that it's not fair my ds's get taxis provided to school and theirs don't. both of those parents CHOSE schools miles away from their home, I have sent my two who can attend MS to the local schools but have to accept a taxi to get the others to their SN bases. I can't chop myself into three and be at 3 schools miles and miles away at once.

tabulahrasa · 17/04/2012 12:40

My DS has AS and a speech disorder, he can be decidely 'odd' at times, but is mostly a friendly, kind, polite (well there's rules about that, lol) boy who's massively intelligent...can't find one thing in an empty room and has been known to lose his shoes at school, but that really only affects me, lol. He has no behavioural issues, isn't an objectional person to spend time with but is noticebably not an average typical child.

He stopped being invited to classmates parties at age 6, by the time he left primary school he spent break and lunchtime helping the janitor and ate lunch alone. Not through choice.

At secondary, he's had his shirt urinated on during PE, food that he's made taken off him and urinated on, he's been punched, slapped, kicked and hugged when they realised that would upset him. He's had his ear folded into a bulldog clip ( the kind for keeping paperwork together not some obscure playground slang) he's had groups of pupils follow him home so that they can play sone sort of game involving smacking him on the bottom on they way home. And of course lots of low level name calling and teasing.

I've had to explain to my DD what, mong, retard, spaz and downie refer to after she's come home in tears because she's been targetted as his sister - just randomly as she's still in primary and the children concerned are at DS's school but two years younger than him.

We're regularly told at parent's evening that DS should try to fit in more - you know, because even though his AS makes that difficult he's clearly just being awkward Hmm

We've had teachers tell him he should make more effort to speak clearly and write better, obviously 9 years of speech therapy, 4 yrs of occupational therapy and 10 yrs of handwriting programmes at school just wasn't enough effort.

He was told that he couldn't do home ec even though he enjoys it and is good at it because he's physically incapable of lifting their biggest pan when full of water and it might come up in an exam. (obviously I corrected that)

We've had random adults asking me while out - as he stands beside me if he's not right or has special needs - for no reason at all that I can understand other than nosiness. They completely ignore the fact that he's right there, can understand and often was in fact in the middle of having a conversation with me to satisfy their curiosity.

DS has come to the conclusion that most people are unpleasant, I'd love to correct that opinion, but overwhelmingly the evidence is that at best they're ignorant and uncaring.

DS is pretty amazing though, how he gets up and goes to school quite happily astounds me, but he does and he still is willing to try to be friendly to people he meets even though he's usually rebuffed - he's great, more and more though I find myself not convinced that people in general are :(

hathorinareddress69 · 17/04/2012 12:40

I help more and I'm more tolerant I think - I don't know, I was only 20 when I had DS so maybe I just would have got tolerant. It certainly opened my eyes - I'd never come into direct contact with anyone with disabilities before I had DS and I remember thinking it must be my fault I must be the worst mother in the world.

Peachy · 17/04/2012 12:41

Lancelottie ahve you looked at NAS Befrienders? ds1, now 12, gets one visting him every week to do social things- might work for your son?

dottyspotty2 · 17/04/2012 12:41

I was always tolerant but my sister worked in a hospice for disabled children from me being 10 and I spent 2 summers there at the age of 13 and 14

dottyspotty2 · 17/04/2012 12:44

Peachy we have similar schemes but DS has resisted it not for want of trying but if he digs his heals in there's no chance of him budging.

lancelottie · 17/04/2012 12:44

Hadn't heard of that! Thanks, pEachy,I'll look it up.

lancelottie · 17/04/2012 12:46

Can sympathise with the heel-digging though. 'But does it count as someone being a friend if you arrange it? Does it count if they come because they have to? I want people to want to see me!'

Bloody child is too bright for his own good.

hathorinareddress69 · 17/04/2012 12:46

I'm going to do a proud mummy thing here. And it's not even about DS. Well, it is sort of.

And it'll be long.

Sorry.

This is a boast. So don't read it if you don't want to.

DS went to secondary school and started to do a sport. The sport relies on "calls" which are audible. He was (obviously) not able to hear the calls that well, so (instead of excluding him) the other boys who did the sport with him developed a system of pokes so that he would know what he was supposed to do.

They also were massively tolerant of his speech and him being slow and never ever once pulled him up on it and all waited for him to talk.

They are, without exception, a lovely bunch of lads and when I tried to thank them for being so understanding of him, to a man they could not understand why I was even saying anything.

They made me cry. In a good way.

Peachy · 17/04/2012 12:46

beinga round disabled kids helps doesn't it dotty? I was lucky: my school was one of the foirst to pratice inclusion (we had a kid with severe CP, no speech in our class in the seventies!), my mate has a bling brotehr who would hang around with us as kids do, and I helped out at an SN School and later worked in an SN unit.

I always felt the dx was easier for me- a shock but not a trip into an unfamilar world- than DH who hyad very little contact with disabled people before dx.

lancelottie · 17/04/2012 12:48

Hmm, there seems to be nothing in this area organised by the NAS, but maybe there are others. Given we're near a Well Known University Town, I should think there are plenty of AS-types around.

hathorinareddress69 · 17/04/2012 12:51

Also, there was a boy with Aspergers/high functioning autism (I'm not sure) who joined in the same sport. Same bunch of lovely lads.

I was there one day and he was being OCD about a particular thing (and I'm not meaning to offend so please excuse me if that's a foot in mouth saying) and I commented on it and told him he didn't need to do it Blush

I got jumped on (figuratively) and told that helped him cope he was just like that and I should butt out. They were incredibly protective.

devientenigma · 17/04/2012 12:51

sorry haven't read the whole thread, however I could go on and on about things that have happened to us. We have been abused and neglected by not only the neighbours, family, so called friends, some of which have disabled/sn kids themselves, local parliament/authority, health and education!! I don't know which strory to tell as there's that many, however if anyone here should request any, I will spill x

dottyspotty2 · 17/04/2012 12:52

Sure does peachy my bf growing up has a nephew with DS but around that time they often still got referred to as mongs and it used to really upset her he was a lovely wee boy.