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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:
Glitterknickaz · 17/04/2012 14:48

The school that told me that DS1 'might be better off if I chose somewhere else' whilst I was looking for schools when he was at preschool - in other words don't send him here - he's now in Yr3 and doing amazingly in mainstream.

The parent at said school that called my kids retards. Whilst my kids were there.

Envy at the 'free nappies' I got as my kids weren't continent at school age.

Envy at exit passes for days out - we couldn't go out if we didn't have them.

Blue badge envy and abuse when I do use disabled space culminating in someone criminally damaging the motability car.

Being considered scrounging bastards right here on mumsnet because both me and DH are carers - caring for three kids with multiple complex additional needs between us. No they're not always at school all day thanks. Apparently we have a 'sense of entitlement' - I feel like punching anyone who types those words now to be honest.

Oh and again here on mumsnet, apparently DS2 shouldn't have his riding therapy as mumsnetters can't afford riding lessons for THEIR kids. So he should just rely on the non existent physiotherapy service then, yeah?

Plus there is some fairly hideous shite spouted about us (the collective us, parents of kids with SN) and our kids on AIBU that is allowed to stand for reasons of 'education' and 'debate'. Comments that would be removed like a shot if about someone's race, sexuality, gender or religion but because it is disability then it's open season, post what you like.

Notthefullshilling · 17/04/2012 14:49

Right this is going to be long so if you want to skip fine by me, it is also about being an adult not a child as although I had all the abuse bullying, ostracising, staring, etc as a child I want to take on one of the sacred cows of this place from an adult perspective.

As an adult with obvious disabilities and I have found that I must be grateful for everything at all times. I must never be in a bad mood with anyone ever. I must get used to being tlked about not to. I must get used to people asking me things through other people e.g. (does he take sugar?" I have to not get frustrated when asking for things to be different, like the lay out of a shop, or people not to put obstacles in my way, only to be told they "did not realise it was a problem". I must be a cheerful crip and ask fr things in a joyful and none demanding way or else I am "scary"

I have to like being asked by children and random people "What's the matter, with you" the alternative of telling people to not be rude is either aggressive or unhelpful. So your getting the idea that I have no such thing as privacy, nor do I have any dignity as someone who is born with a impairment quickly gets used to having things done to them even if they do not want it to be, not even talking about medical stuff, like what school, or what hobbies etc. Now the common theme and with those posts above mine are the lack of personal respect and seeing the individual. Instead being treated as public property and as a collection of ailments / problems.

It then gets worse when nothing disabled people do is good enough, we camping and we are moaning killjoys, we work and pay taxes, but we are worthless to the employer as we might need extra support or need flexible working. We are sexless as on this board it has been said many times that no one has a right to sex, fine no one has, but it's damn easy for those who have no problems in attracting a partner never mind actually physically doing the do, to then spout how rights do no EXIST. Perhaps if we said lesbians should not expect to have sex ever, a bigger outcry might be had.

Parents with children of SN want them to have every opportunity and experience that life has to offer, I am glad to say that most children with SN will achieve their potential, but to finish with the litany of ishoosh. Potential is being limited by money, facilities close, services shut, schools expel, transport is lost, people become mean and ugly, social services and health care become more rationed and less responsive, families are pushed way past breaking point trying to deal with the inhuman faceless system. In short this society promotes division and people turning against those that they are told are weaker and more problematic than themselves. Not just disabled people, but women, the elderly, black people, young people, you get the picture.

And yet we fight, we, refuse to lie down, we refuse to let the bloody middle class conservative voters who are the ones that are of primary interest to the politic-le parties in this country, get to sleep soundly at night. We will kick them in their guilt, and we will continue to haunt their dreams. We will keep telling them that they are holding up the system that is so fucking knackered if it were a horse it would be glue already. However the most unforgivable thing is the intolerance and down right lack of respect shown on this board as exemplified by both the public transport thread, and the transsexual thread. I do not think we have to agree with everyone, in fact the one thing that pisses me off most is that carers have so much politic le influence whilst those they give the care too see theirs decrease, disabled people and those they care for should in some respect be oppositional they are after all coming from different points of view. But feminist, gay, race, and age campaigners all need to be aware that no one group has prior claim to rights, that is a hierarchy the very thing that is the root of the problem in the first place. Ok done now, thank you for reading this far if you did, if not I can't say I blame you.

KalSkirata · 17/04/2012 14:49

Agin - my older kids are adults and never done the young carers thing. Mostly its just me and dd (she is the 8 yo with CP)

2old2beamum · 17/04/2012 14:51

I have posted this before however disabled a person is there is always a beauty spot just stand and look it will blow you away. Our people are so beautiful. Maybe bloody hard work.
On another point respite 2 of my DC,s get 5 nights every 28 days. I can't believe parents get so little, my 2 have got Continuing Health Plans.

KalSkirata · 17/04/2012 14:52

notthefullshilling I'm a disabled person as well as carer to my daughter so I see both sides.
Plus the fact the 2 wheelchair family cannot get on a bus together cos there's only one space.

Glitterknickaz · 17/04/2012 14:53

I get 2 hours a week respite from 3 disabled kids, I'm incredibly grateful for it.

Yes my post on here is a moan, but I wouldn't be without my three. They're my life and they're wonderful which is why I am so angry at the bigotry.

TroublesomeEx · 17/04/2012 14:55

In short this society promotes division and people turning against those that they are told are weaker and more problematic than themselves Yup.

Notthefullshilling · 17/04/2012 14:59

my apologise for the some what amusing typos, put it down to me being a happy crip!

tooloudhere · 17/04/2012 15:00

We were eating lunch out a museum sitting at a table in the canteen. Two girls 7/8 ish thought it was great fun to keep sticking their faces in my sons pram as he was trying to go sleep to laugh at him. Yep laugh at a baby because he looks different and has a few tubes hanging out of him.

I asked them if they had any questions (always try to explain thing to children ) they said no. In the end I told them to leave him alone. Their parents didn't intervene either.

Together with the incident in tesco where a child said look at that baby he looks stupid doesn't leave me with much hope for him getting through life being accepted and not getting picked on. Breaks my heart.

KalSkirata · 17/04/2012 15:01

we used to bring a whole cafe to a silent halt by tube feeding dd through her gastronomy tube. Some people think we should do it out of sight.

Agincourt · 17/04/2012 15:04

I don't know why people have such an issue with tube feeding, bloody hell. They are eating their dinner/lunch at the table, why can't the person with a mickey button do it

TroublesomeEx · 17/04/2012 15:06

Glitter People just don't understand and nothing is done to raise awareness. It shouldn't be down to parents to 'educate' the wider population on threads like this or out in the community. There should be a discourse of inclusion in society - it should be in schools, on TV, etc. People with disabilities of any nature should be seen and accepted. There should be zero tolerance on all disability discrimination.

My BIL has a child with ADHD, ODD and something else - I forget which. 'They' (the professionals) are now making noises around ASD so who knows where that will lead.

We know a profoundly deaf child. She has horseriding lessons provided through Aiming High. Her parents have had comments made to them about this. Tbh, in her case, it isn't to do with strengthening muscles and is all to do with raising her confidence and self esteem and giving her a bit of a break and some fun for God's sake! Yet there have still been comments about it not being 'fair' that she benefits from them.

I would how many parents would want to swap their child's hearing permanently for a few free horseriding lessons.

twolittlemonkeys · 17/04/2012 15:07

My experiences pale into insignificance compared with those I've read here :(

DS1 (now 6) has Aspergers. He is academically very advanced for his age, so people assume all the time he should be able to function socially and emotionally like a NT child. His first school (private) knew of his problems, though at the time we were awaiting an official diagnosis and offered an 80% bursary as they were so impressed at his academic ability. They made his problems ten times worse. Every day the teacher would ask for advice but they would do the exact opposite, eg interfere physically when he was having a meltdown, usually resulting in someone being kicked by accident, though they would claim it was on purpose. All children had to have school dinners, and despite his issues with all kinds of food, they would not let him take a packed lunch, so he wouldn't eat anything and the afternoon would be a write-off. At October half term they asked me to 'bring him back when he was ready for school' Angry Needless to say, he never went back - by that point he was a stammering wreck and had so many tics and nervous twitches I was in tears.

Happily he's now settled at a lovely village state school but it still saddens me when he says 'I like x, he's my friend but I'm not his friend'. He still mentions a friend from kindergarten whose mum put a stop to his friendship with her son when it became apparent that he had AS. I've lost count of the number of 'friends' who disappeared when they realised my DS was a bit different :(

r3dh3d · 17/04/2012 15:09

DD2 is being bullied at school because her sister is in a wheelchair and wears nappies.

I don't know how a bunch of posh little six year old girls know the word "retard"; I can only guess it's because that's how their parents talk about DD1 when I'm not around.

Notthefullshilling · 17/04/2012 15:12

r3dh3d Ricky Gervaise!!!!

LollipopViolet · 17/04/2012 15:24

Oh yes, I've had some tough times (visually impaired, although to look at me you wouldn't know).

The nasty bus driver round Christmas time saying I shouldn't be allowed my bus pass, nor should any disabled people, they should JUST be for the elderly.

The college students jealous that I got a taxi to and from college (the only one suitable for the subjects I wanted to study, and I wasn't able to use buses then - although I am now, just not when it's very dark, or it's a new route and I'm alone). I told them if they wanted the same, to go and stare at the sun for a bit.

The 5 years of relentless bullying at secondary school, for all manner of things including my eyesight, that left me, for a few years, feeling suicidal.

The time when, after returning to school post squint correction with orders not to get even water in my eye, someone threw a snowball into my eyes. My eye was visibly red and had clearly been operated on!

The school, knowing all this was going on, not doing anything and saying I must be antagonizing people or bringing it on myself.

But, I'm over all that, I've got some great friends and do everything I want to do. People actually forget about my sight problems - example, in a very dark ride queue at a theme park, all my mates ran ahead. They'd forgotten my glasses go darker in the sun, and that then going into a dark room I wouldn't be able to see a thing! They came back for me though, when I shouted a reminder Grin

2shoes · 17/04/2012 15:30

Kal please don't mention the one Wheelchair space on the bus, co s people in wheelchairs don't have friends/family in wheelchairs and always want to travel alone.
or the one disabled toilet, or the one disabled parking spot.
it is almost like society doesn't want more than one disabled person at a time in public.
wow what a lot of posts.
please don't have this moved where it can't be seen.
I don't go on the sn boards, tbh I try not to post about dd too much on mn as a whole .

OP posts:
2shoes · 17/04/2012 15:31

r3dh3d you are so right, it is how the parents talk.

OP posts:
Codandchops · 17/04/2012 15:44

I don't know if I belong on thos thread or not.

My son is autistic but because he is so verbal he can be mistaken as "normal" (whatever "normal" is).
So I get tutting and looks when we are out and he does something silly or odd
.
He gravitates towards younger children on swings etc because they are on his wavelength, I then spend my time hovering anxiously and reminding him to be careful and to remember the other children are quite a bit smaller than him - he would be horrified if he thought he had hurt anyone. This is one of the reasons I understood what the OP was asking on the other thread.....I have never had any negatives from other parents thankfully.

He cannot cope with being teased......and younger children quickly pick this up but often don't have the maturity or social skills NOT to tease him which leads to tears (his).

I cannot leave him unsupervised.....he would dash straight actross a road impulsively if he saw something. Road sense is coming slowly - he is 9.5 now.

People see a normal looking child who talks for Britain, they don't realise tat underneath he is a mass of sensory issues and fears which sometimes governs his behaviours in crowded places.

Peachy · 17/04/2012 15:47

Codand you do belong here

DS3 is more severe but ds1 has incredible verbal skills, and easily passes as NT....... briefly.

Agincourt · 17/04/2012 16:25

yy we had some child (one of the boys friends) calling dd a spaz (have I said this further up, I can't rememberBlush) and mocking her and I called him on it. His mother said it wasn't him at all when I saw her a few weeks after, she said it was my boy and he was making fun off my dd's 'beautiful handwriting' HAHAHAHA and at that point I knew the woman was full of shit.
Reader my boy wouldn't make fun of his sister and doesn't know what a 'spaz' is and my dd cannot write and can barely hold a pencil

god I sound bitchy but I was so cross

Peachy · 17/04/2012 16:32

Mine get called retard ats chool.

DS2 gets called retard becuase he has siblings with SN.

There is no point mentioning to parents since I heard one of the mothers (one I had thought of as OK) shouting 'are you a gay retard or what?' at another classmate (don't know background and don't care).

School are trying hard. When ds1 (yep the one with ASD) was Chair of School Council in his last year of primary he started a fight against racism at school, and now his brother is battling disablism- and has taken punches from kids he has stopped from calling a classmate with ASD R.

My son will grow up to be a decent human being.

Thumbwitch · 17/04/2012 16:36

This thread makes me so sad. I have friends here who have children with autism, children with Asperger's, children with verbal apraxia and other behavioural issues - DS's 3rd cousin also has autism. So far (this is all pre-school) the children are all very inclusive, the playgroup mums are all very inclusive - but who knows how much this will change as they get older - I hope not much and will do my best to ensure that DS continues to accept people for who they are regardless of what their differences are.

We hold our playgroup in the enclosed back area of a community centre. There is a large hall that opens onto the area, and a group of blind people use it sometimes, mostly elderly people. Once I saw a small boy in there, hands pressed against the doors, staring wistfully out - so I went in and asked his grandma if he could come out to play with the others. She said "Well, he's autistic - will that be a problem?" Sad that she had to ask and I don't know if I said the right thing by saying "If you think he will cope, then we certainly will - I don't want him to get overwhelmed, but we're happy to have him come and play". He had an absolute ball - his face was lit up!

I really think it's about time all children were taught more about inclusivity (is that a word? Confused) very early on - before they have a chance to pick up on their familial ignorance and prejudice - it's beyond comprehension that our so-called civilisation still allows people to behave like superstitious fearmongers whenever they see someone different.

ReindeerBollocks · 17/04/2012 16:43

Yy to the tube feeding. DS eats and is tube fed. We rarely tube feed in public but his 'friends' have been mocking his mickey button. One of them even had the cheek to make a comment directly to me. Luckily they caught me on a good day and I explained why he needed it and that it doesn't make a difference to him as a person.

DS has a best friend who doesn't seem to notice or mind DS for who he is. The best friend is brilliant in my eyes - and his parents are very down to earth and not fussed about it. There are some wonderful and accepting people, it's just a shame a few of the more thoughtless or cruel can make such a negative impact.

Peachy · 17/04/2012 16:47

It is superstition isn't it Thumb? If I can't see it then it can't happen to me or mine

Combined with some insidious bad press about disabled people being X and Y.... and even us carers have come into that now.

But - and this is crucial- the majority of people are quite able to make a choice about how they act, and rise above silly stereotypes and lies. DS1 made me go with him yesterday to the Church to give a homeless bloke a blanket and flask of soup, if HE can step outside the crap and be so charitable (first homeless man we've ever seen here poor bloke) then someone who is NT bloody well ought to be able to!