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

[2shoes]

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.

Well I think the fact MNHQ havent commented on this thread speaks volumes....

A year ago we went with ds to see a consultant about hyper mobility, his joints are really flexible. Any way the consultant took a quick look at his joints and said they were fine, then looked through his notes and said, 'I see he had his hearing tested'. I was a bit confused as to why he mentioned it ad just told him that he'd had severe soeach delay and they checked his hearing to rule out, then I told the consultant ds is autistic. The consultant just shrugged and said well it must be mild as he's responding to me fine.
I was so cross and upset, the only reason ds was responding so well was because me and dh had prepared him for the hospital visit. An this bloody arse of a man dismissed and trivialised our life after seeing ds after just 10 minutes. Now I know he isn't an asd expert but what gives him the right to pass comment like that .
That one really pissed me off for ages, in the end I had to just let it go.

Yep VJ Have had the same thing.

A Comm paed told us last year that "an asd dx wont help your son"

Oh. Right. So what will?

Blank stare.

It does, doesn't it, Bec?

see, I've got no problem with debate, robust debate, out and out rows fine. Exchange opinions, that's good.

But when it's things like suggesting people with disabilities shouldn't be allowed out, or on the planet! or all disabled people are X or disabled people this, that or the other, or someone is some negative thing because they are disabled (like saying someone is a bully because they're autistic, for example!) that's wrong.

An individual can be an arse. Without a disability or with one! An individual can be a selfish git, without a disability or with one. An individual can be in the wrong, without a disability or with one, and there's nothing wrong with saying so! But when it crosses into disability is the reason why or people with disabilities shouldn't, I dunno, eat out in restaurants because they put other diners off their dinner (another gem I've read on here!) then it shouldn't be allowed.

Well, you all need to remember that as a service provider, in my opinion, MN has a duty to protect you all, as people connected to those who have a disability or people with a disability, all of you have the right to expect MN to be a place where your dignity is not violated, and where there is not an intimidating, hostile, degrading, humiliating or offensive environment for you.

Missed out and "and you" but you get my point.

AN and you

FFS

ok, going to stick my neck out and risk being flamed for this.

I don't think the thread linked to (the powerchair one) is disabilist and I think that it weakens your argument if you insist it is.

I am glad that MNHQ have admitted that they were slow to respond to your worries, and that they will be more vigilant in future, but this thread was very different to the SN kids in playground thread, where there were some massive assumptions being made and offensive things being said.

It should be possible to have a conversation or discussion about a rude person who happens to be in a wheelchair or have SN without being accused of being offensive.

It comes back to inclusion, imo. If we want people with SN to be fully absorbed into society then we have to accept that people will say things about them if they do something unrelated to their disability that annoys them.

The woman could have been on a scooter, or pushing a pram quickly. Her actions were rude, which had nothing to do with her disability.

At the same time, I can see that you are more sensitive to the undertone that goes through these threads, because of your experiences and the abuse you have received in RL and on MN.

And I can see that you would be more likely to catch the nuance of disabled-bashing that I might not - but I am on your "side" if that doesn't make me sound like a 12yo and I cannot see it here.

I am all for reporting comments that demean, upset, offend or in any discriminate against people with SN and will do so if I see one.

Feel free to tell me to fuck off or try to convince me I am wrong, but I think if you (we) concentrate on working together to promote a positive environment on MN for any person with SN or with children with SN, then it will be a more welcoming place.

Getting offended and reporting threads like this only serves to divide MN into SN and anti-SN.

I stayed away from the disabled adults in the playground thread. All threads I''ve been involved in like that are always full of ignorance and assumption the likes of which fill me with a rage for the world thatIi have to ignore on the daily or I will go crackle pop.

Folkgirl, Exactly, if that person doesnt understand WHY they are or should be following recommendations, its pointless. A conversation i have had with school and their bloody 'no difficulties' drivel. If he has 'no difficulties' with social skills for example why the bloody hell are you giving him social skills training twice a week and what are you working on! (although in ds case most recommendations are not followed, as school feel they are not needed, not because they dont understand WHY these are needed, but because he doesnt cause a problem for anyone if these recommendations are not followed)

I think their best so far has been calling in ASD outreach, she observed various difficulties, then comments 'school require no assistance at this time as difficulties are well managed' so why the bloody hell did they call her in the first place! to pacify mum!

I dont have review meetings. I dont have IEP meetings. I have meetings when if i call a meeting, which immediately put school on the defensive, so the time is spent telling me what great progress ds is making.

Yes, MissMavis. That is it.

It is not the thread itself, but the posting of it because she probably wouldn't have if it had just been a person rushing past.

I agree with that. It is making a story out of nothing.

I don't think it is a reason to delete the thread though.

claw, I think part of the difference is between state provision and private provision. I do not want this in any way to be taken as 'all private schools are better and all state schools are shite', but ime (dd1 is 7, and has been to a variety of placements, both private and state, ms and sn) the private school staff tendto be better trained, and, crucially, better supported.

I know the school 2shoes dd goes to, and it is amazing. my dd is at an amazing SN school (and was at ehr last placement too - also private). the staff I encounter are more than happy to have me as the expert on dd, and try to incorporate my knowledge into the day as far as possible. even tiny little things like knowng the home/school book actually gets read each day, and discussed (I had a tutor who had not been with dd1 that day come up to me to congratulate me about a success I had mentioned in her home/school book), and that each day I will be given both verbal and written (and truthful!) feedback on dd and what she has been up to.

I have 2 meetings a term, an hour long. the school office is alwyas open, or I can call them at any time. I get dd1's SALT reports, and the first page always says 'please read and call me if you have any queries', with a schedule of available times (3 days per week, a couple of hours per day); her SALT and OT attend each meeting too, as well as her head tutor and ABA consultant.

I am treated as an equal - I clearly do not know as much as them about the ins and outs of the school/daily life there/the curriculum, but they are happy to take on board suggestions for how to approach things, given my knowledge of dd1. there is no 'them and us' - it is all above board, transparent and all moving in the right direction. nobody takes a small criticism as a personal insult, but instead it is discussed, and a way forward hashed out. everyone is willing to (try to) see the others' position, and ponder over information in a new way.

I think all of this can happen at good state SN provision too, but that often it does not. same for ms - it is possible, but does not always happen. I also have to add that dd1 has attended a private SN provision where I was dismissed as delusional, staff ignored what I said about her and her needs leading to school refusal, and I was routinely told by the head not to tell ehr staff anything, as they did not have to listen to me.

I thnk, at the end of my ramble, it is about the leadrship of the school, and the teachers being secure in their knowledge. ime, teachers who are (genuinely) sure they are making a difference tend to be a lot less defensive than those who are trying their hardest to believe they are making a difference whether in ms or sn provision, state or private)

Folkgirl said it all better earlier, when she said that you need to know what you don't know before you even begin to learn about it. if a teacher is secure in what they know and do not know, and able to access support to learn what they need to know, then they are more amenable to treating parents as allies, not enemies.

just imo, though.

I'm sorry, I can't even read any more, so awful, dear God, . The abuse is just beyond anything, everyday.

I just want to say sorry, sorry that you and your children have to go through this rubbish, day in day out. .

oh, meant to add - all of the above can work, at dd1's school, because she is properly fully funded there. the fees (thankfully now met by the LA) are high, becuas ethey incorporate sensible things, like regular SLt, OT for each pupil, at whatever level of need, and time for htose professionals to talk to parents.

a non -private school does not have that same luxury.

we can have the hour long meetings, becasue the school can factor in that much time, for each key professinal, for each family, and still be covered adequately in the classroom/lunchtime/wherever.

Yes, I get that, HereIGo. It won't be deleted through cause it doesn't break the guidelines to be small minded and petty.

And tbh, it is nothing compared to the stories other are sharing on here but I accept your point that it adds to the general bad feeling towards people with SN.

Sorry for derailing this thread with that.

Getting back to this thread. Are there charities or groups that are working in this area?

Silverfrog, hi there, good to see you

I just made a long rambling post, must have taken so long, i was logged out and lost it when i hit the post button!

I reached the conclusion that my only hope was private recently, unfortunately i cannot afford this, so i now just solider on, i leave school to their own devices and treat it a bit like a social club for ds. I dont expect any help from them anymore.

I do what i can with the knowledge i have to help ds with his social skills, handwriting, sensory etc, etc. If at any point he starts to refuse school again, i will home ed.

I have started a thread here

I'd be delighted if some of you could pop over and describe your experiences. Please.

violet5 what is your charity called?

MmeLindor it was the play ground thread I reported, not the fast wheelchair one.

oh and can I say that silverfrog is right about the school dd's goes to it is independent school, But it is paid for by the LEA

There is no doubt at all that people with visible / non visible disabilities face not only having to fight to get support but discrimination and ignorance and abuse. I do not think anyone can ever dispute that. I find it heartrending when I hear (and have experienced) when people are deliberately cruel or extremely thoughtless ( rather than just absent minded on just not thinking / distracted) towards anyone they perceive as "different". It makes one wonder about some elements of the human race. [mad]

I think however that its actually quite difficult for many people who actually are very lovely people when they dont know what to do when they are aware that a person has a disability. Its clear from responses on this thread that each person has his or own preferences / dislikes about whether for example they welcome questions rather than being ignored or stared at or whether (s)he would prefer people just to be left alone. One persons "people ignore me" is anothers "people wont even look at me" .... ones persons "eye contact" is anothers "stare".

It's like when someone asked about whether to bend down to be at eye level with someone sitting in a w.chair............. . there IS no real answer because some might view it as her being intimidating / non inclusive if she stays upright and others might view it as patronising / condescending if she kneels down.

So I thing Many people just dont know what to do / say in case they cause offense and end up doing nothing ....... in which case they can be viewed as ignoring or negating the person / issue. People might just be afraid too of the response they will get if they "get it wrong" and their words / actions misinterprated ( just like I think has happened on some of the threads.) ....as it is even worse with the written word. !!!!!

Maybe some people want to come on an acknowldege / support all that is being expressed here but are just wary in case they say something "wrong" ...

People are also not sure of the specific terminology to use ... when I started 40 years ago spastic was a very proper name to use as someone with cerebral pasly who did indeed medically have limbs that were spastic / tight. Mongol too was a term not associated origionally with insulting connotations. As they were however mutated and used by some people as insults then words changed and now its very, very hard to know what is universally accepted as proper non-insulting-to-anyone termonlogy to give a short description to describe a condition which affects someones brain or body.

I think on the other threads mentioned I have been on ( the playground on) there was no malice intended ( that I recall) .... misunderstandings maybe but no intentional disabalism.

Anyway . loooong post so to finish maybe a short intro as I am a new person....

40 years ago I was around when anyone "different" was locked up in huge assylums almost no matter what their "diagnosis" and we were just starting to realise this was WRONG and moving onto far more appropriate living / educational settings. Trained also as nurse . Worked long time with children and adults who require intensive support. Still fighting to enusre that people that provide professional care do it properly ! Several friends of mine either have CP or on autistic spectrum, friends DS had CP and LD and DSD microcephaly.

I just find it so hard to expain to people how fucking hard it all is, you know?

I know IABU as people find it difficult to believe things that they havent experienced themselves, but when we found out ds1 was severely dyslexic (as well as his other issues) it was staggering how many people said to me;

"Oh, well there is so much help now for these kids isnt there?"

Sigh.

And then you have to tell them.

"No.....No. There really isnt. SEN/SN budgets are miniscule and if your childs problems are not deemed severe enough they will get no help AT ALL, like my ds1"

And then, of course, they look at you pityingly and walk off thinking;

"wow, such exageration...it cant be that bad!"

But it is. It really is. And my son does not have a severe/life limiting condition like some of the kids on here. I get so angry when I see yet another thread about a parent having to beg their LA for more/larger size nappies for their child. I dont know how my laptop has survived because I often want to throw it at the wall when I read those threads.

Can someone (who is more technically astute than I) copy and paste this thread and send it to the Govt, to the oppostion, to ANYONE who might actually give a fuck????

anyone who might give a fuck?

erm.

I think we're all on this thread.

Nobody in power gives a shit. They pretend to during the run up to elections, but that's about it.