New MN campaign around children with special needs

[RowanMumsnet]

Hello

Following on from this, um, lively thread from a couple of weeks back, we wanted to follow up on kungfupannda's excellent suggestion of an MNHQ-backed awareness-raising campaign aimed at - in kungfupannda's words - 'making it absolutely, uncompromisingly clear that in order to fully include children with severe disabilities, people might have to accept a bit of disruption once in a while.'

We were thinking about something along the lines of our We Believe You campaign on rape myths; that is to say, an ongoing awareness-raising project aimed at the general public, rather than a short-term campaign with specific policy requests attached. We would be thinking about pages on Mumsnet itself featuring the experiences of our posters, activity on our Bloggers Network, ye olde Twitter hashtagge, and any press coverage we can grab.

The suggestion on the thread was for the campaign to be called 'Tolerance is...', but we at MNHQ are a little unsure about the word 'tolerance' (which can suggest barely-contained irritation, rather than the kind of empathetic understanding and generosity of spirit we'd all like to see). So we were wondering whether something along the lines of 'This is my child' would work better?

Please feel free to use this thread to give us any feedback and ideas, and generally let us know what you think.

Thanks
MNHQ

I agree that focussing on just behaviour or just autism doesn't feel right.

If the focus is to be about children, which I understand, given the nature of MN itself, then it should be about all children, not just a few.

For example, despite one of my children having autism, within my own field of experience, focussing on autism alone would be missing part of this issue for my family. Ds2 suffers from pain and exhaustion on a daily basis and as someone said upthread, he shouldn't be judged for, eg, needing a seat on a bus. He is a lovely, sweet lad, who never behaves badly or complains and would rather stand in pain than cause a fuss. Because of this, his disability is often ignored and/or overlooked. To look at him you would think he is a perfectly healthy child, but, just because you can't see his disability, doesn't mean it's not there.

Leith, check out further up-thread on Friday 1st Feb jst before 17:00 hrs. It was part of a tongue-in-cheek discussion about the Welcome to Holland poem.

I would like the term 'behaviour' to be better understood tbh.

My ds' behaviour means that he imitates all the children in the classroom by watching what they do and copying. He has absolutely NO level of engagement however.

His teacher once said 'I think he has a memory problem. He sits beautifully, listens carefully, and then as soon as all the children get up he has completely forgotten what the class has been asked to do'

Nope. He never did listen. He doesn't even know he is supposed to listen, or to whom. His 'behaviour' is preventing him from learning.

Tbh the very term "challenging behaviour" winds me up. Wish that term could be struck off as it just gives notes of "naughty children" "violent children" "dont go near that one children"

Why not Anxiety Induced Behaviour. hmm? or lessend social awareness

WHY challenging......

Same as the term tolerate. Put up with comes to mind not acceptance of differences.

going out and closing the door again lol x

Sorry I have read through the whole thing over and over and have had a think for the last couple days. Shoot me but I can see why you are focusing on children being mn and parents. Sad that there are older parents here to with older "children" that are not included in that bracket but I can see what you are saying to a point about being too much at once.

BUT ok so its about children. Children first disability second. Regardless of what the disability is all children suffer the same fate in non inclusion, non understanding and non acceptance whether wheelchair bound, invisible disability, non verbal or any other disability. Inclusion is a major factor rather than behaviour. Lets face it 99% of the time the "behaviour" is due to lack of understanding and inclusion.

Only example I have of this is that a non inclusive school who decided their job was to "contain" my DS broke him completely and yes resulted in bad behaviour due to torment and lack of inclusion. 4 months down the line, inclusive school, willing LA, courses taken and I have a child who has NO challenging behaviour in school. This also ricochets to the outer community, if the general public were more accepting and inclusive they just may well have nothing to bloody well stare at!

I also dont think this should just be about children with autism. If its a campaign for disabilty then ALL disabilities should be included and one major factor to base the campaign on rather than just singling out behaviour its too wide an umbrella.

Back again after more thought but if this campaign is based on inclusion, acceptance and understanding then perhaps ALL children regardless of age come into that bracket? just food for thought x

I agree coff33 'extreme challenging behaviour' is one of DS's diagnosis/symptons and comes o all letters.

He also comes with a risk assessment, whereby it states remain within arms distance of him, do not approach him from the front or side, do not bend near him etc etc

yet he is a lovely boy really all you need to do is get to know him and his issues.

(sorry don't want to offend anyone with my personal experience)

I agree Dev your boy is such a little charmer melted my heart he did despite his difficulties

Great post Coff.

I think the age debate is a bit of a conundrum really. MN is a site for parents and therefore, by default, their children - BUT there are older parents who have older children on here and it doesn't feel right to exclude them. I know I'm always telling my dcs that they will still be my babies when they are all grown up and bigger than me and I know I will still be as active in defending and supporting them and their rights when they are adults.

I also think, as Star said, behaviour is often part and parcel and in some cases, central to certain disabilities, but it's also seems to be one of the hardest things for people to get their heads around and is more often than not used, discussed or explained in very negative terms. I don't have a clue about the right way to tackle the problem though, as I always seem to end up tying myself up in knots when trying to explain and it ends up turning sounding like (or rather been heard as) either justification or excuse, which isn't what I mean at all.

Oh yes.

We need a campaign.

Every campaign helps.

The bloody ignorance is shocking.

as are the justifications and the dismissing of people who actually give a shit.

Wot coff said, as well as getting rid of courses and advice to 'manage' the child with x disability.

ADHD, Autism, and other neurological conditions have courses upon courses for teachers and parents on how to 'manage' the child with these.

Please can we change 'manage' to 'educate', or even 'treat'.

'Manage' sets such low expectations and is akin to 'contain' or 'babysit' until the child can become someone elses problem.

I agree with the current crop of posters pointing out the issue of just focusing on children. The issue is about inclusion and acceptance. That does not stop at school leaving age It should however start at nursery age and be part of every school philosophy that each child has their own way of learning and their own way of behaving. It is often said that schooling is about socialisation and teaching kids to be part of the wider society, this is followed through by setting targets and pass rates for exams and attendance, as well as behaviour, that from the word go exclude children with a huge range of SN.

It has been said on here that keeping the message simple is key and not trying to do to much is better than trying to cover a massive range of issues. I have some sympathy with that, but I fail to see why we cannot aim high by talking about difference and respect which are huge messages but with a simple set of examples or a simple slogan. The "see me" slogan was simple but allowed the entire spectrum of mental health and types of mental ill health to be opened up. Going back to what I was saying about socialisation it, it could be that this campaign is on the idea that socialising children to accept everyone instead of just those that fit in to a tight descriptor of what is "normal" would be the way to go.

Starlight I am not trying to be picky or difficult as I think you point to something important, but if we could use words like inclusion or accessible, these change the feeling of "doing things to" in to "working with" which is I think better.

I agree Star.

I ducked out of this thread as it all got a bit difficult and tense, but, I think a change of attitude to seeing children as individuals who can be taught skills and who can be supported to develop independence (or as much as possible) and who are equal is what we need. They are not passive recipients of pity asking please to be treated kindly: they have the same right to respect and dignity and personal autonomy as everyone else. It is not contingent on personal belief, attitude or sensibility. This really has to be seen in the same light as campaigns against racism, sexism or homophobia.

Sadly, the language of inclusion in schools is bogged down in terms like 'managing' etc which are based on a perception of what is normal and what is deviant so that inclusion actually comes to mean integration which is a different thing altogether. Children's actions, conduct, thoughts and behaviour can then be seen to challenge normalised perceptions of how a person should act and they therefore must be changed.

This is shown in the language. Coff is dead right - behaviour is then seen as 'challenging' rather than anxiety based. Challenging to whom? The use of the word is more likely to reflect the adult than the child's needs.

Any campaign to educate should not be presented as a pity party. Children with disabilities don't want pity or kindness, they want to be given access to the same life skills as their peers, to be supported, to be understood. This is their right.

My DS2 is 13 1/2. He's growing up quickly and getting nearer and nearer adulthood. But I will always remain his mum, and my role will be that of a carer as well as a parent for years after he turns 18. Even when your NT DC turn 18 you don't stop being their parent and for DC with SN this seems to be even more the case.

I would be dismayed if a mumsnet campaign to promote awareness of disability restricted itself to under 18s. It would exclude a lot of posters. What happened to inclusion? Our DC don't suddenly get better at 18. In fact, once our fights with the education system have finished I would guess that's just the start of our battles with the 'system.' A battle for which I feel most unprepared and unknowledgable.

Do we still give support on MNSN to those parents who are talking about their adult DC's issues? I should fucking hope so! Should we have a board for adults with disabilities, even if they don't happen to be parents themselves? I think so.
Should this campaign be broad and shallow rather than narrow and deep? It's an 'awareness campaign' isn't it? When are they ever deep?

The fact that people are being scoffed at on these very boards for taking exception to the word 'Autistic' being used as an insult actually shows it's people's ingrained ignorance of terminology that is a bigger problem than responses to challenging behaviour.

I've been really absent because tbh I'm "autismed out" at the minute and focussing on the light and fluffy mumsnet. My own sn child (well the first of them) is 18 in less than a week and things aren't easier in fact of late it feels worse so I would like there not to be a cut off point in terms of age particularly when professionals and services seem to jump on the fact that 18 (or even 17) seems to be a great time to offload the child to adult services that may be non existent.

When DS2 was small, DS1 wanted to make him a t-shirt that said

'I have autism. So whats your problem?'

Anything around that?

Maybe : This is me. So, what's your problem?

I like the slightly forceful tone.i get a bit frustrated that we are endlessly asking for education and understanding when wankers just then start talking about pc ness and 'the disability lot'.

I love that mnhq want to start something on this. Ds2 is 16 but I still think increased education would ripple out and that has to be a good thing.

OK, completely different approach here. Why don't we focus on 'what happens when s/he's 18'? Why not do a campaign highlighting the absolute shittiness of the transition from child services (usually not great, but something) into adult services? Lots of things to talk about, for eg Blindcraft, an Edinburgh factory that employed blind and partially sighted people shutting down due to loss of subsidy. I'm sure others will have similar stories to share which will give good localism to the campaign. And it's still parent-focused (agree totally with MNHQ on that).

I've just found this thread - I thought the idea had rather fallen by the wayside, so glad to see there's discussion about it.

I'm sorry if the word "tolerance" has offended anyone. My thinking was that an awful lot of the upsetting posts on this forum have been, like "that" thread, about people not being willing to make even the slightest concession to a child who might not be able to always control his or her impulses, and may cause, for want of a less negative word, disruption. There will inevitably be times that people with no experience of disability will find themselves confronted by the fact that someone with a disability might need them to move out of a space they are happily occupying, or might make a noise when they'd prefer quiet. My thinking was that it might help for people to recognise that "tolerance" involves accepting some minor inconvenience or even disruption to their own lives, for the sake of everyone finding a place and pleasure in this world.

I wondered, perhaps naively, whether there might be a way of making "tolerance" or "acceptance" into positive concepts. Not "we put up with you" but "we tolerate a bit of personal inconvenience for you to be here". Not "we grudgingly accept your right to be here" but "we accept you, wholeheartedly, into our lives for however long our paths might cross."

I was thinking more about the "tolerance" being aimed at the people who are intolerant, rather than at the people who should be tolerated if that makes any sense.

I can't really think of any other snappy way of saying it. Sorry.

Sorry, I meant to say that I focussed on children with SN because they seem, from all the stories on her, to be the subject of more open prejudice.

All sorts of diabilities come with challenges - and I'm sorry threesocks, for whom I have the utmost respect and affection, and I hope she knows that, feels that the proposed campaign might ignore disabilities of children such as her own daughter - but it seems to me that people aren't terribly willing to recognise that children with hidden disabilities have any sort of additional needs at all.

I met an elderly lady the other day with an autistic grandson - she described it as "the last prejudice". A bit of hyperbole, perhaps, but I took the point.

I was thinking more about the "tolerance" being aimed at the people who are intolerant, rather than at the people who should be tolerated if that makes any sense

It does make sense.

So the onus is on intolerant people to change, rather than for people with disabilities to be tolerated?

'Starlight I am not trying to be picky or difficult as I think you point to something important, but if we could use words like inclusion or accessible, these change the feeling of "doing things to" in to "working with" which is I think better. '

And here I think we have the crux of the key differences between a campaign for children and a campaign for adults.

Our current model of 'working with' instead of 'doing things too', as an ideology, if not reality, is what is failing our children and allowing society to shrug and deny support. Child initiated learning/play is a pathway to insitutionalised care and dependency, when a child with difficulties, particularly in social learning is not TAUGHT the skills that typically developing children pick up intuitively.

I agree with changing 'challenging behaviour'. If anything it should be directed at those people who come across difficulties. Perhaps these courses, these concepts should be renamed 'Functional Behaviour Analysis' courses .