STAND UP AND BE COUNTED AND STOP THE ATTACKS ON SN PARENTS

[4madboys]

ok NOT an aibu, but this is where it will be seen the most and it NEEDS awareness.

quite frankly, i along with others am appalled at the comments that are being made and left to stand, toward the SN community, they are downright offensive and quite simply appalling.

i am sure (or hope) that the majority on here do NOT agree with them but yet the SN community on mn are not being supported, whether this is because people do not know what to say, or they havent seen these posts i do not know?

BUT IT IS ABOUT TIME THAT THINGS CHANGED, so this a thread where you can stand up and be counted and say that you do not agree with the disregard, blatant trolling and offensive behaviour towards our lovely mn who have or are dealing with sn in their family.

they need this place for support, not the vile behaviour that they are getting.

so please post here and show your support and help make a change for the better.

all it takes is a smile next to your name to show you agree :)

I have noticed there seems to be this idea that you are either the parent of an sn child, or an nt one.
a lot of people like me have one of each(or should I say a foot in both camps) just wanted to say that
as you were

Lissie doesn't get offended at pregnancies, she just hurts a lot is all after her history.

Sevenfold very true; I thtink most people are like that in fact. Indeed there's a risk we are making the perceived 'them and us' line bigger when we refer to ourselves and Sn aprents and I think that makes it easier to disassociate with teh general cause.

ASD is assessed using carefully validated diagnostic instruments such as the ADI-R and 3Di for which there is a vast amount of statistical data; children with unclear dxs usually get a label of 'traits of ASD' (doesn't fit all criteria) or left to wait (60% of all chidlren with an SN locally are without diagnosis); ADHD before diagnosis, as part of the DSM criteria, includes D. There must be clear evidence of clinically significant impairment in social, academic, or occupational functioning. and 2) Six (or more) of the following symptoms of hyperactivity-impulsivity have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level

It's not as wooly as people assume but you have to know about the DSM in order to recognise that I know.

And YY to what JustAbout says.

I refuse not to bring it up in a discussion; this carer life is my day to day life and as normal to me as popping into the supermarket or whatever. It just is; equally it impacts all areas of my life, epecially having a few kids with SN and using SMU systems. A real answer to a 'why' querstion on MN will have different experiences and this is just mine. There are a great many threads I don't post on as they have no relevance to me- LMFAO at the idea of skiing with my asd boys for example () and I rarely post on topics sucs as ORT becuase we don;t use those. But where I do post yup as a parenting board it will accompany me.

'The posters who post spiteful and disruptive nonsense are in a minority

Yes.

Trouble is those few tend to be the same ones that go on and on and on and on....

Parent of nt kids and one asd dd & Step-parent to 2 nt kids and one adhd dss .
Take your parenting rule book and chuck it out ,because parenting sn kids is a whole new world ....and every special need is different from each other.

Autistic daughters needs are vastly differnt from adhd stepsons needs and they are both different from my cp cousin`s needs. All are challenging , all are time consuming , and all are lovely wonderful kids who just need a fair chance at life like the nt kids take for granted.

NT parents have no idea , its not deliberate that some can be thoughtless , just that if you havent lived with a sn child there is no way ypu would understand how it affects every aspect of your life.

Take for instance dd4 lost a tooth at school yesterday.
Teacher told her tooth fairy would visit and give her pennies for the tooth. DD4 REFUSED TO GO TO SLEEP ...she wanted to see the fairy.
Had a meltdown at bedtime. eventually exauseted herself to sleep. On wakeing dd4 discovered tooth fairy had been...tooth is missing to be replaced by coins. DD4 SCREAMED TO HOUSE DOWN BECAUSE TOOTH FAIRY HAD STOLEN HER TOOTH. refused to eat breakfast , brush her teeth or get in car to go to school until the tooth was given back.

THEN SHE GETS INTO SCHOOL AND SCREAMS AT TEACHER BECAUSE " ITS MUM AND DADS FAULT THE TOOTH FAIRY DIDNT COME TO VISIT!"

Nt child would just think " cool ive got £1 for tooth falling out."

...like i said nt parents have no idea .< lucky gits >

Can I just say I think this is been, for the most part, a good debate, and I for one have learned a lot and am now consciously making more of an effort to think before I speak / post. Which can only be a good thing as I talk drivel most of the time.

'I think that a lot of the problems come from the spectrum nature of so many conditions. At one end of the spectrum, diagnosis of cerebral palsy or ADHD or AS will be subjective.

There is not really a neat and tidy binary where somebody plainly either has a disability or not. The systems that are in place have to pretend there is one - based on diagnosis. But it is true that some people have no diagnosis but are more severely affected than those who have.

I've been told by a paediatrician, that the diagnosis for ADHD can depend partly on the family circumstances - in a family with an excellent support network, it may be easier to cope with ADHD type behaviour, than in a family who is not so fortunate. That does NOT mean that the children involved are just naughty - it means the parents or carers are seeking extra help because they need it, and the accurate diagnosis enables them to access that.

'

That's interesting.

I think it is obviously right that a child either in a family that is struggling or one where a aprent is informed is more likely to be picked up is mroe likely to receive a diagnosis, absolutely: but that probably means that the child whose parent does not know is at a greater disadvantage from their special needs, and reading on MN about behaviours etc can help. I was leading a training day at work on AS when I read the presentation and thought 'oh shit'; until that day I thought I was a spectacular failure of a parent. The impact was huge; we have managed to get ds1 the help via education that means he is able to live to his potential and have a decent independent life. I can't prove it but without input I'd lay money he'd be in prison before he was 21.

But teh bit about neat and tioidy- yes it is IF criteria are correctly followed, and if there are PAeds not following that they should be hauled up. The criteria can be either specified by ICD or DSM which i will link to in a minute; usually in the UK the DSM is followed and the diagnostic tools work with that. Will go fetch links.

ICD [[http://www.who.int/classifications/icd/en/ (A WHO publication)

DSM here currently under revision, the revisions to ASD I have seen are quite significant but possibly not as significant as they need to be- it's hard to get full recognition for example for the inmpact of sensory issues within ASD. Only drafts about atm though.

American site but we sahre tools for diagnosis usually

And now I just spotted an article comparing Ander Breivek with Adolf Hitler on the ARC (Cambridge Autism Research Centre site) and my own research is in ASD and empathy so will vanish and do soemthing useful!

Droves

It is the little tings isn;t it? DS4 can become severely upset and meltdown if his cereal bar apcket rips a tiny bit on opening, I now have to make sure I open it before he wakes and have several spares JIC or he will be anxious all the day. No way an NT parent could guess that without me explaining!

Most people who use a term that offensive to others, on being told why it's offensive, stop using it - in that company at the very least. To insist on using a word others find offensive in their presence is rude. Some may stop using it at all. Most people on being corrected about an assumption in relation to eg blue badges or invisible disabilities take that information on board and change their view.

The ones who don't are usually seeking out conflict and/or deliberately targeting parents of children with SN.

If I say something/use a term that offends someone I am more than happy to be informed why it's wrong. Often when you've heard language since childhood it seems fairly normal. It's not until someone else points out its origins that you realise how unpleasant it is. It's like eating black pudding. It was always pig's blood but it was on the plate at breakfast on Sunday mornings and seemed as ordinary and acceptable as the eggs next to it.

The word itself hasn't changed, your impression of it has. You might not have meant that when you used the word, but it never had another meaning, you were just unaware of it's meaning.

"I've been told by a paediatrician..."
I wanted to pick up on that bit (I know it's not your quote, Peachy, you were quoting someone else) because that paediatrician would still have had their own take on the matter and that would colour their perceptions of the conditions too. Although they all have technically had similar training and should be following the guidelines, their own opinions will still affect the way they work (of course!) - and if they themselves hold the opinion that ADHD, for e.g., is not a "real" condition, they will have trouble being objective about it.

The same happened with ME (totally different condition of course) - because it was originally hard to quantify and difficult to pin down exact cause or symptoms, many doctors "didn't believe" in it (I have a friend who suffered because of this) - and there are still doctors who don't really believe in it.

I am not saying for one minute that the paediatrician in the quote above does disbelieve in ADHD, not at all - just saying that one paed's comment isn't necessarily true for all and should not be taken as gospel, whichever way his/her sympathies lie.

Also you could use the example Peachy has given in the past of an Ed Psych refusing to believe ADHD exists.

If a condition has been discovered, researched and named by doctors then it does exist. Subsequent comments by professionals subsequent to that can also be as subjective as the man in the street.

Valid point.

I grew up in a family that claimed to be atheist but seemed to deify doctors and the like; now I spend more time with them- not so much.

Told it a hundred times on MN but JIC anyone missed it, apparently when they did a talk for medics (they being uni team) they asked what is autism- all qualified GPs- and one raised his hand; when asked to explain he said 'as it begins AUt it's linked ot hearing'.

Er no.

Aut = self BUT increasingly we are relaising that's not right, it's more about langauge and sensory difficulties and that for some people at least the self part comes from inability to express rather than actual self obsession. We also increasing relaise there's no such thing as 'autism straight' anyway and it's a myriad of consitions with different aetiologies that sahre a core symptom presentation.

Good point Penelope as well.

My own GP refers to ADHD and ASD as 'wooly nonsense'. It just means he knows too little (and that he has a tendency to dislike women who are informed, something i've experienced with him before over hyperemesis when he told me there were no meds, I pointed out there were, have taken them before, then got all angry as 'well my wife had it worse'- therefore I refuse to see said GP any more. Others at surgery are lovely anyway).

(Tianc - I posted on the wrong thread! 'Mouseface Tue 13-Sep-11 20:02:02
Great post saf - exactly how I feel. This thread has totally gone off topic now. As I suspected it would. - Sorry )

Doesn't even make sense! Sorry OP

(if I have a lot of anecdotes it's becuase I have worked in related fields since twenties, still do sort of, study a related topic and have 4 kids with related disorders; it's not that our professionals are more daft, just that we see far more so meet all the daft ones IYSWIM)

Peachy

Nemo has a team of about 25 HCP in one form of another and boy do they vary in daftness some days!

But we'd be lost without every single one of them.

Hello

I've just started a fucknuggets quiche thread, inspired by this thread and the 'mental' one, and I wanted to come on here to explain that I'm not taking the piss.
I thought, especially when people aren't conscious that they're using offensive language, a post from a 'fucknuggeter' might diffuse or at least lesson any tension that arises, and people who don't click on SN threads might click on fucknugget threads out of curiosity and then get engaged.

Does that sound ok? I don't want to make light of a very serious subject.

I now understand why - it is because the SN impacts on EVERY SINGLE BLOODY AREA OF YOUR LIFE.

Yep!
Well said Justabout.
Every single minute of every single day of every single week...
Even when they are at school the time is spent organising/form filling/hospital appts/meetings/battles/fights...

No breaks and can i just remind everyone that for this we receive, if we're lucky, £55 pw in carers allowance. Only for one mind you- if you have 2 or more, you still only get it for one. That's around 30p per hour isf anyone's interested (or 15p per hour per child in my case). No NMW for us guys!

If I were to put my two in residential care (which is tempting at times!) it would cost in the region of Half a million per yr in staff wages alone ( I have researched this), not to mention all their extra stuff, like bills, clothing, food and so on.

If one works PT and earns a penny over £100 they do not get CA.
If one is a pensioner they do not get it.
If one is in anything classed as FT education (maybe 12 hrs per week) they do not get it-and this includes children who care.
There are over 6 million registered 'carers' in the UK.
We save the country the entire cost of running the NHS

And yet we are vilified often as scroungers and benefit cheats, work shy and lazy.

yes, justa's post rings lots of bells for me too. The way i find myself on threads wondering what I am doing there? should i mention ds's SN? Just seems to reflect the way i feel when i go to a toddler group, or if I am sitting having coffee with friends. I worry that i bring ds's issues and the problems they cause up all the time, but the reason i bring them up all the time, is for that reason,

"it is because the SN impacts on EVERY SINGLE BLOODY AREA OF YOUR LIFE."

and when posters come on and say, 'well of course, we didn't mean you', it seems to dismiss the fact that, actually there are a fair few people out there who have children with sn, and they don't have a beatific glow around their heads, so that everyone knows who they are, and really it could happen to any one of us.

Outstanding post Unpa!!

Exactly, a whole £55 per week to be on hand 24/7. However, if we were going to do this as a profession, as a carer choice, we'd get paid a whole lot more, with sick pay, paid holidays etc......... wait, we'd even get holidays!

I'm not complaining here, even though it looks that way, I love my son and would not want him in the care of anyone else. Ever. I know him, I have known him all his life and before, and he knows me. Just because he has Complex Additional Needs doesn't make him any less my son.

It means that whilst those parents without children like mine (ours) aren't having to go to hospitals all of the time, or fighting for respite support, or fighting for equipment to aid their child, simple things like feed sets, shoes, bathing aids, nappies, medication, physiotherapy at home, nurses coming to your home to make sure everything is okay, community support, appts with Consultants, pleading for appointments to discuss their child's on going care plan...... we have to fit all of that in, plus everything else that a child of the same age would do.

And yes, I, we, made that choice, to stay at home and care for our disabled/SN/LD children, and yes, most of us were unaware of our child's problems before they arrived into the world.

I know, with my hand on my heart, that DH and I would have carried on with the pregnancy if we had known what our son was going to be born with. We'd waited a long time for him, our son.

Nothing changes in your heart, he's still part of me, us.

I just wish that carers received the same recognition that any other 'profession' would.

DD and DS2's SN impact on every area of my life, everything I do is done to work around it.

And did you know, if you have a disabled child, but also have a disability yourself - you are not allowed to get Carer's Allowance, because one person with a disability cannot be a carer for another person wih a disability.

Hunty that is outrageous!!!! How can a disabled person not be a carer for another disabled person?!

I'm so

I've spent years trying to write appeals about this to the DWP, and the (previous) Secretary of State. To no avail. Given up now.

Well I have no experience of SN or disabilities but that sounds like an almighty cause for the MN masses to get behind. It's like legal discrimination

I'm so mad about that