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.

how do you mean informed?

On the plus side, there ARE people out there who aren't like that - I have managed to nab one of them as my new boyfriend!

He works in care work loking after young adults with severe disablities. He takes one lad that he works with fishing, and he rings me and they both chat to me to tell me what a great time they are having!

I have come across some lovely people, such as the lady who held my two toddlers hands the day my DD had a meltdown in the middle of the road. It enabled me to get my DD out of the road whilst still knowing that my toddlers were safe. She then had a lovely chat with me and cheered me up when I was frightened and stressed (DD was only 5yo, and it was her largest meltdown ever at that point - caused by the fact that the pink car that we always walked past wasn't there that day)

Or the teenager who held my Mac Major for me when DS2 was younger when I had a seizure, and his mate who ran to the GP surgery round the corner and got the GP to come and help me.

Or the little boy who must have only been about 3yo, in Tescos, who ran over and put his frozen sweetcorn on my head when I had had a massive seizure and hit my head on a trolley.

There ARE still some good people out there - but it is sometimes hard to remember that when you are dealing with the not-so good people every day.

Restores your faith in human nature Huntycat DD1's friends as a teen where fab they where so understanding of DS one even gave him his collection of marvel comic figures.

I have three with AS, one is also a wheelchair user. We've had various things, people in supermarkets can't seem to resist commenting can they.
The worst was having to move from a village. Somebody reported us to DWP a number of times for fiddling, claiming that there was nothing wrong with DH or our children and that we were on the fiddle. They told every shop owner in the village that we were fiddling, nobody would speak to us. Have you ever offered your kids a treat, gone into the bakers with your children, and had to leave because nobody would serve you, and the kids are watching the staff serve everybody else, and ignoring you. We had notes through the door and all sorts, and nobody, it seemed could do anything about it. We moved, a long way away, to a nicer area, a bigger and better house, with beautiful views. In the end, we were better off, but it was a dreadful experience, particularly as DH ended up in a mental health unit for a month, due to stress.
The people that instigated this were incredibly well off, and didn't want their taxes going to scum like us. Now you know why I get so het up on 'those' threads!

Not everyone is bad, not every school is awful.

DC1 had a little boy in nursery who had no sight, he was invited everywhere, to everything, he was a lovely little boy and was always included, he was totally blind, I used to really feel for his mother, he couldnt tell light and dark and so had no real sense of night and day.

I learned a lot from them, I would never have thought for example, that because he was extra sensory, crossing roads was a nightmare, she said he used to litterally stop in the middle of the road if he stepped on a white line, because he would want to feel the different textures with his fingers.

Then when he went to school, there was a little boy who was deaf, he had been born with a cleft palette and there was a small part of his brain "missing", they didnt know what it was going to mean. He was never excluded.

DCs just treated them like every other child, I dont think they even noticed these children were different.

I am so sorry that you and your DCs have all been through so much, you should start a hints and tips thread, because its ignorance and being scared of saying/doing the wrong thing that causes a lot of it.

I went out for a walk with my DS and the dog earlier and we took a wrong turn and ended up on a dead end.

Some people were standing outside a house and the dog stopped to say hello. I asked if there was a path that would take us down to the park, or if we'd have to go around by the road. No path, they said but there is a short cut.

The man who showed us the way was very sweet - he had some kind of SN, was a bit childlike in his manner. He was excited to see that our dog's lead was similar to his belt, and showed us. He giggled, he had an infectious giggle that made us all laugh.

He took us to the back garden of a close (a Scottish apartment building with open passageway) and said, "if you go through the garden, then through the close, you will come out the other side".

DS was looking worried so I said that it was exciting, a secret short cut and the man winked and told him that he was not allowed to tell anyone the secret.

It looked Very Dodgy, (think Trainspotting dingy close) but I didn't want to offend him so off we went. He cheerily waved us goodbye and we crossed a minging back garden, through a dark and smelly hall - one of those ones that has several turns - and out the other side.

The guy was maybe about 30ish and I could not help thinking of this thread and wondering what he and his parents have gone through. How he had been treated. It made me so sad, and angry.

Anyway, I don't know why I am telling you this, but I felt I had to share it.

MmeLindor aww I like that post

I have three children who have a physical disability in varying degrees. The youngest also has a speech disorder.

Due to low-level bullying as someone up thread called it, we have given in and are moving house as I cannot take anymore of the name calling, piss taking, pushing, shoving, taunting, snidey remarks, staring, etc. I cannot let my children play outside without them getting hassled or physically bullied. They cannot have toys in the back garden without them being stolen and smashed to pieces. I have no flowers in my front garden anymore....they were all ripped up or broken down by footballs.

I am sick of 'well-meaning' people asking why my son is in a wheelchair when yesterday he was walking......he is in a wheelchair today because he was walking yesterday.

I am pissed off at the stupid postman who tells me to give the children brandy to make them sleep, just because I opened the door at 8.45am in my dressing gown shock horror......well, postie for your information, they can't sleep because they have chronic pain which keeps them awake as well as me.

I hate it when people ask 'are they better yet?' .......err...no, they are not going to get better.....and thanks for pointing it out to the children :(

I hate people staring, especially other children (not sure why) although I must admit, we now give them something to stare at....DS has a Mohican, funky glasses, wears lots of skull t-shirts and neon orange! The girls have long swishy hair, long skinny legs and dress up their specialist Piedro boots with skinny jeans or short skirts and leggings. And they all look great!

Quite often we get 'why don't you get out and walk, a big boy like you shouldn't be in a buggy, should you?' when DS is in his sn three wheeler (wheelchair not supportive enough for a whole day out and can't go through parks, etc.) The last time a father with his 3 year old said this I explained DS has a joint disorder, so cannot walk far, and he was mortified. BUT, surely, the sheer size of DS and of his buggy should be obvious that it is specialist equipment, not a baby buggy?

And finally in this essay what really gets to me is when doctors/medical professionals treat me like a child, like I know nothing and try to fob me off. Worse still, when they address DS knowing full well he can't answer properly then accuse me of babying him when I 'translate'

I have asked mn hq if they can move this into other stuff, so that it doesn't go poof after 30 days

oh yes the daft questions, the amount of times I have been asked if dd will walk.... I mean ffs

I get the same question, but re: talking. "Will she ever talk?" "No. She will probably never be able to communicate meaningfully in any way." Cheers me right up, every time. Thanks for asking.

But I don't see how people can avoid asking those sorts of questions - it's an obvious question and people do ask obvious questions, unless there are social conventions telling them not to. You may think: "will your baby ever get better looking?", but you don't actually say it because we all know that mothers think their babies are beautiful, and so we all know to pretend we think so too. But people with disabilities aren't built into "mainstream" culture in the same way so you can't expect someone to know what is a Really Bad Thing To Say until after they've said it.

Thing is as well, and I really hope I don't upset anyone saying this from the outside POV, is that no one except you really knows your child's situation. So they might ask the walking or talking question of one parent and find out that their child is actually possibly going to be able to achieve something in those lines; whereas another child won't ever. And no one apart from the parent knows which is which without asking.

I do take your point though - it must get really wearing, frustrating and upsetting being asked the same questions over and again. :(

Thumbwitch I know, and when she was diddy it wasn't so bad, but she is 17 now, so it is daft now.....

r3dh3d we are allowed to moan though.
when dd was smaller there was one woman who asked every week(school pick up for dd)
I lost it in the end and told her I was going to make a large sign....
she lol but stopped asking(and yes she did still talk to me)

2shoes some people are totally lacking in both tact and commonsense, I've always said we where lucky with DS as his disability is learning and Autism really don't know how parents of physically disabled manage I know there's no choice but to get on with it but I admire you all.

couldn't agree more about lack of commonsense. Why oh why do people ask "will she ever... (fill in gap with talk, walk, lead a normal life etc.)" in front of her aarrggh! How do you answer without dumping a load of stuff on dd's shoulders, or being rude to the person asking the question?
Yesterday, my mobile rang - it was her carer at school - she passed the phone to dd to have her explain something. Oh dear. DD is non-verbal. And I can't see her nodding or shaking her head down the phone.

Glad Awkwardmary has had an epiphany. Good that people here are being heard.

While I have had nearly 11 years of having to cope with his difference in public he fortunately had not noticed the stares or comments. I think that is starting to change and I really do fear for his future. I doubt he will ever be independent and he is completely vulnerable and open to exploitation. I am worried about him hitting puberty with all that entails on top of everything else. He is not yet as tall as me but can push me over when distressed and still needs assistance with bathing toiling etc etc. He is fabulous and exasperating and life is such a challenge for him.

On a positive note, we had my db and his family come for christmas from Australia . They are a very sporty active family and I didn't know how the cousins would get along given ds's difficulties. They were amazing with him, very quickly clocking how to distract him when he was starting to stress out and how to make him laugh. I was really moved by how inclusive they were with him. He is totally besotted by them now and was heartbroken when they left.

Life with his disability is tough for all of us but we can find our way through generally, what we don't need is people adding to that with comments and attitudes that make us feel we have to defend his right to exist or crucify ourselves to get him the help required.