If one more person says/does XX then I shall not be responsible for Y

[eidsvold]

Just on from the JH responds thread - thought I would start again after my little rant.

2shoes made me smirk when she talked about lamping the next person who says shame to her...

So I thought I would start.

If one more person tsk's or stares or mutters about my child, I shall let them have the full force of my fury at their rudeness.

We took the dds out for dinner last weekend - very concerned as neither had had a nap, had a full day travelling and being busy. They behaved so nicely. Dd1 was brilliant - no meltdown or carry on really. She did not want to hold my hand going out of the restaurant ( happening more and more - she is a big girl now!)

As we left thanking an older gentlemen for moving in so dh could get the buggy through and I could get the dds past without bothering him - he tsks and mutters about kids, then shoots dh a filthy look!!!!

FGS it was 7pm - don't want to be around kids - stay home or have dinner at 8pm when most of them are at home in bed.

Hedgewitch, because I get very withdrawn and find speaking very difficult or impossible when I am overloaded or stressed or upset, I get:
"Well, you didn't say you were having any problems" or "well, you seem to be coping fine to me."
Oh really? Well how about YOU go through two weeks of having a severe headache because you can't ask for painkillers, YOU struggle through mild depression because you can't go to the doctors and YOU get a dry throat because you can't ask for a drink/where to get drinks when you're elsewhere and then come back and tell me you're coping fine .
"You" being generic ignorant comment maker, you understand.
With Ds1 we don't get too many ignorant comments, probably because most strangers think he's younger than he is and no nstrangers know of his diagnosis.

I am laughing so much at the einstein and "so and so didn't speak till they were 102 and is now a brain surgeon who won't shut up!". I had the Einstein one only yesterday.

Have any of you noticed that health professionals are quite capeable of a few doosies of their own.

DS2's GP said
" Mrs D - if you keep talking about autism you will make him autistic"
There you go - autism induced by eavesdropping

Paediatric consultant said " he just needs more oppertunities to play. Does he go to playgroup?" At that precise point DS2 was biting my neck .

And GP again. "you seem very preoccupied with him. Are you keeping busy at home?"

Well cleaning up the vomit and pooh keeps me pretty busy and mopping up his brother after he has eaten him can take up a whole afternoon if you try....

I loved the GP who, immediately after me telling her that DS was non-verbal and so wouldn't understand what she said to him, decided that a VERY LOUD, VERY BRITISH VOICE would crack that pesky old autism - "NOW COME ON YOUNG MAN, THIS IS ALL GOING TO TAKE A LOT LONGER IF YOU DON'T CO-OPERATE".

For me its the well meaning Mum's at school or after-school clubs who say " Oh he's fine. He's just being a boy" I realise that they are generally trying to be helpful but they really do miss the point.

My Mum is a SENCO and her BF said recently that she thought that conditions like AS and ADHD were made up to escuse bad behaviour. Mum was really upset as she felt her bf was basically rubbishing what she does for a living plus casting aspersions on ds.

One of dd's friends mums told me that I was really lucky that ds has a statement and she wished her dd had one so that she could get her into the school she wanted for her. Her dd (9) agreed with her I replied that I would much prefer that ds didn't have sn so that he didn't need a statement but I could tell from the look on her face that she didn't understand.

Our GP is a great man. He never speaks when he shouldn't.

But some of the consultants...:

'you really musn't let X use a wheelchair, because she'll start perceiving herself as disabled'
(ah, you don't think she might just notice as she crawls along the pavement on her hands and knees? )

'now what do you think X could be getting out of all this?' (what? you mean a dislocated hip joint isn't its own reward? )

'well, X, the good thing about having your condition is you're going to have lovely looking skin when you're 40'
(well, yes, but I'm 11 and I've got a fractured foot now )

Headteachers are good too:

'Yes, we understand that X is ill, but you can't expect us to be happy about it' (really, after she's gone to all this trouble getting herself a chronic condition simply to entertain you )

But the one that really upsets me is my own Mum asking anxiously when she's going to get better.

Or hinting that if we would only move back to Scandinavia all our problems would be sorted
(yes, well known fact-they tweak your genes as you pass through customs ).

Or digging up some Scandinavian doctor friend to tell us that all her treatment is wrong and it would be totally different if she were treated there.

Going from this thread, I'm not the only one that goes ballistic when it's suggested that our child will get well/should get well/would get well if we only accessed this miracle treatment.

I suppose it's because it puts us in a situation where we, the Mums, have to argue for the negative side. It's as if we didn't want our children to get "well", as if it was all because of us...

When all I want is for dd to live life to the full, to make the best of the best we can do for her.

Oooh, that reminds me - our paed (otherwise sensible man) when discussing some of DD1's more worrying behaviours (self-injurious behavior and complete refusal to eat, as I recall) suggested I buy a copy of "toddler taming". This is a child with a developmental age of 8 months. And no discernable need for attention, or understanding of communication.

cory - your list is classic in a very way .
My last GP was my hero and i have to quote him verbatim with the words that are forever etched on my heart

"mrs xxx. I learnt everything I know about autism in a lecture hall some rainy thursday afternoon about 20 years ago. You have been living breathing and studying both your son and his condition every single day and night for five years. You tell me what you need and i will try my best to get it for you"

'you really musn't let X use a wheelchair, because she'll start perceiving herself as disabled'
(ah, you don't think she might just notice as she crawls along the pavement on her hands and knees? )

Oh cory sorry but you are up there with needmorecoffee with your black humour you just made me lol.

I saw a copy of 'The Secret Garden' in a cafe the other day. It reminded me of the story which is about a boy who is only pretending to be disabled so that he can manipulate his father but who is jollied out of it by a 'sensible friend'. There is also 'Heidi' which tells the story of a girl in a wheelchair who is not really disabled but who is being spoiled by her aunt and father and who again miraculously walks when a 'sensible lad' throws her wheelchair down the Alps. I think there is a deep rooted belief in human culture that disability is somehow not real - or is it psychological avoidance? Do these stories invent or re inforce cultural prejudices?

Dd watched Heidi on her bedside TV when she was being kept in hospital and not allowed home because the consultant thought her joint pains were a "perception problem" resulting from being sexually abused. It made me feel sick.

She was watching that film while surrounded by medical staff who believed that was her story and who organised her treatment accordingly. And who made it quite clear that I would have to treat her the same way or otherwise they would have proof that I was the one encouraging her perception problem. It still makes me feel ill to think about it.

And yes, they made me get rid of the wheelchair. What I wrote before about crawling along on her hands and knees wasn't a joke- she's done that. That's how terrified I was that they would take her away from me. But in the end even they had to recognise that the Heidi treatment didn't work.

(and no, dd has never been sexually abused, she has a genetic connective tissue disorder)

shit cory that is awful(sorry if I lol in wrong place)I suppose I thought it had to be a joke iynwim

You're welcome to laugh, hun, that's how we've coped all these years.
I knew you weren't laughing at us, but at the silly doctors.

cory . that story of medical incompetence reminds me of what happened to a girl at my school. She had quite severe scoliosis, so had an operation. After the operation she was still in a very lot of pain. So her parents took her to various doctors, including private. She even got sent to psychiatrists, as the docs seemed to think the pain was psychosomatic. Eventually a competent doctor spotted that the operation had made her spine curve in a different way - which was a known possible side effect of the operation so should have been spotted much earlier.

God how awful. People with learning difficulties are also at risk of undiagnosed pain. And they get left to deal with pain that no NT child would be expected to. Most cases I've come across have involved severe gut disease and autism - resulting in behaviours which are just put down to the autism. The pain isn't even recognised or considered. Awful awful awful.

My poor DS is unable to express pain.
When we found out he had teeth growing through the roof of his mouth he had to have an op. The SN dentist explained afterwards that he had a tooth that was split down to the root at the back. When he awoke after the op the first thing he said was "tooth, mouth all better".

He can tell me after something has recovered but not while it hurts.
It is just awful .

Ohhh I've just read one on a blog .
"Aspies are all the same".
Right. Sure. Yes

I get all the time - 'but he really is a very good looking child', as though that can make up for his difficulties!

But the one that really gets me are the parents who cannot wait to tell me how well the dc are doing, or how great their speech is despite having glue ear and then immediately ask me 'so how is your ds2's speech now he has his hearing aids?'!

And - 'Do you not just think he is a bit lazy and if you didn't give him xyz he would just ask for it?' WHAT!!!!!!!!

Gosh - am feeling really quite about it all suddenly.

Being told by random parent support worker that "if you treat him more like a normal child, he will act like a normal child...perhaps he has too many professionals involved with him"

Yes, he does have too many professionals involved: CAMHS consultant psychiatrist, OT, SALT, Behaviour Support Service, Ed psychs, but...maybe, just maybe, there is a reason why they are all involved...and why he has a full time Statement of SEN...just perhaps it goes meyond me not treating him like a normal child...perhaps I treat him like he's not a normal child for a reason??!!

Well, my mil just rang me to ask me if my son's autism is caused by any drinking in pregnancy. She knows I am teetotal, have been for many years, and certainly did not drink during my pregnancy, in fact I did not even touch tap water.
The reason she asked is because Dr Chris said on 'this morning' that autism can be caused by alcohol.
Did anyone watch it?
So there is another thing to add to the list.

Mine are similar to Fio's. People, friends and family even, who know dd1 is severely disabled but still seem to think it appropriate to say things like:

'They grow up so fast don't they'

Ermm, no, actually.