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.

Dev, you know if I was nearer I'd be there. That goes for all the SN mums I know. Bloody geography

I think the worst part of havign DCs with SN is the isolation it brings, for both the parents and children involved (and their siblings too to some extent).

I'm lucky as DS's medical issues aren't immediately visible, so while some people know his history - its not always obvious to the public, which can be both a help and a hinderence.

My friends are sick of my talk about DS's needs. Even now, when I worried sick about new OT appointments and awaiting for several more dx's, my friends just roll their eyes or 'switch off'.

DS also doesn't talk about it to his friends for fear of being bullied. Some children just don't like anyone who is different.

It's a lonely place to be, which feels even more lonely when you have to battle against the working of the medical profession (and that's even with a dx).

I didn't see the thread yesterday but it's becoming an all to easy target to bash disabled children - children who have strength and resilience to keep going despite the daily difficulties they face. What those who are ignorant miss is that they could learn a great deal from interacting with SN children - including patience, love and understanding. The children who learn to laugh at the little things in life and not get worked up by stupid unimportant things.

where do you live devientenigma?

I feel really angry that you have been let down by schooling too :( for all the problems we face our dd does go to a lovely school, so at least we still have that for 6 more years then god knows what will happen

my ds2 who has sn ,has meltdowns on the bus / supermarket and has a mac major elite ,i have often heard ppl wisper on the bus about him being to big for a buggy ,and he once got laughed in a play centre for having a nappy on and always get asked if hes mute hes non verbal too :(

We grew up in the '70s. Lovely. We were constantly bullied because our Dad was a double amputee who drove a and I quote "spazmobile" - one of those three wheeled cars the govt used to dish out to disabled people. We were also bullied because he "walked funny".....

It's very sad that those attitudes still haven't changed very much.....

I agree SN is an isolated world, however what is isolation?

I would say I'm shocked to read these experiences, but I'm not. Largely because I've read similar so many times on here before .

I know you all probably know it, but it might not feel like it very often, but not every nt person (adult or child) is like this - vile, rude, smug. Or tolerates or accepts it.

I've posted on here before about a time when DD was a baby and a young woman with Down's Syndrome came over to look at her in her pram. I didn't mind in the slightest, she was just a woman cooing over a stranger's baby. Her mum was horrified when she saw and whisked her away with reproach for her and apologies for me. I felt dreadful. I tried to say it was ok, but she didn't hear me. I just wonder what shit she'd had to listen to in her daughter's life to make her react so strongly.

There have been other times too where I or the children have met/played with/encountered children with SN and sometimes I've been saddened by their parents reactions. Again, it makes me wonder what reaction those people normally experience to their children.

If my children have ever said anything at all about anything - hand flapping, toe walking, 'funny' noises, physical disabilities, I've always challenged it, and explained. I'd NEVER let either of them say or do anything to another child/person. I'd be furious if I found out they ever had done when I wasn't there. I don't think they would though.

I don't think I'm special or great or anything, just that I can't understand how or why people would behave in this way just because a stranger, classmate's sibling or family member has SN!

All children/people are amazing and precious and none of them deserve to have their lives made more difficult.

And as for those having services withdrawn it's an absolute disgrace.

Apart from my mum saying when DD2 was about 3 days old and in NICU something along the lines of "I expect you wish she had died at birth don't you?" we haven't had many bad experiences.

Some fuckwit parents stirred troubles for DD2 when she was in Y1 spreading tales that she was dangerous when she kicked off having tantrums and was chucking chairs around. If it wasn't so ridiculous you'd laugh - DD2 is hypotonic and can't lift a heavy bag, let alone fling furniture around.

Just a few weeks ago we were at a local pub for a wedding reception and had parked in the disabled bay as DD2 has a BB. On our way out a bloke stood having a smoke asked "Who's got the limp then?". "Sorry?" says me. "Well" he said, "you're parked in the disabled space and you don't look disabled."

"I'm not" I said, "But if you'd like to look in the car you'll see my disabled 8 year old that I've just lifted in there, and her Blue Badge on the dashboard".

At least he had the grace to look sheepish and apologise.

from a random stranger 'why does your DC have that tube? To help breathing?'
Me: 'nope, so that I can poison my own DC with chemotherapy, you see it's better that the parents do it as it takes pressure off the NHS, even though we're not qualified staff and it means rude people stare - and, you'll never believe it but some people feel the need to even comment'
Him: 'Oh...'

From a headteacher 'well, of course I'd try to help but it's really not my problem is it. I mean, so much is down to the parents'
Me: 'Yes but school is very important. It's essential that you are able to recognise and support physical, emotional and practical needs'
Him 'Well, I suppose so but I'm making most of my staff redundant and we really dont have time, plus there are lots of pressue with normal children ...'

Man, I hope we don't get a place in that school. I walked out using the C word

or maybe it was the mother knows her daughter

agree about the isolation. Its extremely hard to go out or to go to people's homes with a child in a wheelchair. A child who needs hoisting to change her continence pad. The majority of poeple dont have hoists. But then you lose friends as they get sick of you never coming to them. Or they arrange park meets you cant go to because where do you change a 10 yo's or a 15 yo's 'nappy'?
So you end up staying in.
this way you avoid the STARES, the pushchair brigade on the bus. One woman actually said I shouldnt take 'spazz's like that' out. I didnt argue because while dd's understanding is normal she hadnt heard but would have heard the argument and realised she is different.
dd has severe CP and epilepsy and cannot move or speak but inside she is like any other little girl. she wants friends. But no-one comes to visit. The last 2 weeks of Easter have been boring isolated hell with no-one for dd to play with. I'm sick of practically begging people to come to mine.
And now dd has realised she is different because one of her Carers played her a story (Sleepover by J-Wilson) where the younger sister is ashamed of her disabled sister. The story described the older sister as needing to be fed, taking up mums time, drooling. dd's face fell and she indicated for the story to stop. Using her communication device she said she didnt want to drool. How do I deal with this? My heartbroken child who has finally realised that people see her as 'different' 'drooling' 'disabled'. Who knows other kids go on playdates and parties and she never gets an invite. She's only 8. It will be worse when she is a teenager.

One day she may even hear that radio interview I did where that vile woman called in to say children like dd should be killed at birth and 'what use' was she

devient if that was to me, yeah, maybe. I did wonder that. But still. The apologies to me were a bit over the top even if the reproaches to the daughter weren't.

oh, have just remembered a corker.

when I was pregnant with dd2, I got told (by my stepdaughter, who was quoting a conversation between her mum and my SIL) that it was great that I was pregnant again, as now I had the chance to be 'proper mum'

who the fuck did they think they were?! my dd1 is a 'proper' child, and I was a 'proper' mum long before I had dd2.

that is the bit that gets to me most - that a lot of people in the world see dd1 as lesser, not as important (because she will not ever be a high-flyer). that they see dd2 as /better/ because she is not disabled.

I live in competitive parent central (commuter belt town), and have lost count of the times that a parent has casually enquired where dd1 goes to school, looked really interested when I mention the name of the town, then glaze over and lose interest when I go on to say 'a SN school'. because of course, if she went to the prestigious prep in that town, we would be worth knowing

I wont even start on the months and months of fighting every single day to get equipment thats vital. 18 months for a toileting chair. 6 months for a seat to sit in. 8 months in a wheelchair that is too small. It goes on.

yeah folk it was, maybe she is just worried about other peoples reactions, so best apologise, plus if it was OTT it's also distracting

you know kal I haven't give any proper stories yet either, I think what we can give are just too shocking!!

silverfrog your Sds remark has reminded me of one MIL said to us about how we should have expected something to happen, what with us being older parents i sent her flowers for her birthday yesterday, i might ask for them back

Folkgirl - there is a residential house near me for people with severe LD's/SN and they are often seen about locally. One man came up to my DD when she was in her buggy wanting to know why she had her toothbrush with her. His support worker was hovering but he could see I didn't mind and was chatting away. I wondered if he was prone to seizures as he was wearing a padded band on his head. Should have just asked really.

Shadowing is not a bad idea - I volunteered as a PA to a woman with Friedrich's Ataxia a long time ago and though everyone shuddered when I told them who I had been assigned to - she had a reputation for being rude, impatient and aggressive, I actually got on with her great. Her personality was so much bigger than her disability and it really got rid of any prejudice or presumption I had.
She would talk about sex to try and embarrass me and for some reason I understood her speech quite easily. Her taxi driver told me that no-one ever talked to her which I thought was ignorant and daft of them - she was feisty, funny and unapologetically herself.

See the person not the disability indeed.

to be fair to dsd, she was only reporting what had been said (she has mild lds herself, but does know enough, socially speaking, to know she shoudl never have said it to me!).

but god, I hate that anyone could think that my girls are anythign less than brilliant and funny, and cheeky, and lovely (and annoying, and frustrating, andeven total PITAs ) - both of them, loved equally by us.

It wasn't over the top.

I think she probably was worried about other people's reactions. Shit for everyone that she felt such an apology was necessary.

Not criticising her for it. Just saddened by a crap society that means her experience told her that would be necessary.

This world is new to me - my daughter was severly burned last year. She's 2 years old and wear 'pressure garments' head to toe which help with her scarring. Whilst I appreciate you don't often see a girl wearing a pink or red balaclava I struggle with the stares. Where I live and v isit regularly people of discrete or supportive - they're used to seeing her. I took her to South Bank before Christmas following a hospital appointment at GOSH adn was shocked by the open starring, nudges etc. Europeans don't even try to be discrete! It was horrid. I don't mind the open curiosity of children - they assume she's dressing as a superhero but struglle when adults stare or make ridiculous comments or also assume it's for fun. Who would dress their 2yo in a tight balaclava? I don't like it when parents shush their children and prefer them to talk to me directly and asdk. If she's not wearing her pressure garments then shes very scarred and differnt and gets even more stares.

As for the endless hospital appointments (2 hours to her specialist unit), affect on my other 2 children, marriage, career, fighting for support, stress of giving her care (approx 45 min 3 x a day) to a distressed, tantruming 2 yo, her itching, sleepless nights, etc etc etc.

On the otherhand the incredible support from some family and friends, and her nursery has stunned me. the care she gets at the hospital and my GP is also superb, it's all the other services around that we struggle with. Especially as my salary is reasonable its assumed you can pay for everything needed.

One thing I do find annoying are the "it's your fault" comments.

You know the sort - it's your fault ds2 has SN, because you should have had a c-section, the natural birth caused it.

He doesn't talk because you don't talk to him enough/ have you tried talking to him? (how do they think my other children learnt to talk?)

you let him get away with being lazy (!)

you baby him by feeding him/ giving him his drink/ whatever, if you left him alone he's get on with it. (he has hypotonia and cannot coordinate his movements properly to be able to feed himself or drink by himself)

Subtext - it's your fault, you're a bad mum.

KalSkirata, is there a young carers group near you? My boys go to one once a month and they get such a lot from it

I was actually blamed by a professional for DS's problems as if I gave him 100% attention he would be fine he was 4 I had a 3 and 7 year old at the time he didn't talk was hyperactive with sever learning and behavioral problems he was DX with autism this year after a 14/15 fight. I'm waiting to bump into him to tell him how wrong he was at the time my self esteem went right down and it still prays on my mind from time to time.

I try and deflect shit like that from SIL but I'm not quick enough to do more than state facts with a . I aspire to witty comebacks that both amuse sil and make the other dickhead person think!