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

Kungfu
I think you have made a great suggestion.i think the intent is good and many of us are incredibly pleased and positive about the momentum you have created.

But as others have said we are just a regular population and we will not all agree. Don't let that take the shine off the fact that you have prompted a great buzz of ideas.
I for one am grateful. And ds2 is 17 this year. It feels relevant and positive to me

Kungfu honestly don't worry. You suggested a brilliant thing.

My DS doesn't have autism or any other behavioural disorder and yet I would very much support a campaign that focused on those areas.

I also think that every parent with a young child with SN is very much aware that one day they will be an adult. This is just an excellent start.

I think if I came to this country from a perfect one, the stand out thing for me would be - there exisst a large group of people who NEVER EVEN THINK about disabilities, who think its ok to say cruel things, and who refuse to tolerate difference if it impacts on them in any way.

That because one hand some people have no exposure to SN at all (or rather none that they know about) so have no idea what SN is. And also because some people are just ignorant and selfish twats that only see their own problems/inconvenience etc...
I am not sure we would be able to make people less selfish (that would be A LOT of work) but I am sure we can educate the ones who don't know and at least put pressure on the others to be more careful (and who knows they might even learn to be less selfish).
And I do hope think that the first group is the biggest and the most likely to change.

I feel a bit stupid now - teach me not to read the thread.

Anyone who has ever been a part of any committee, knows that you can't just rubbish other people's ideas unless you are prepared to:

a) Make a good case against and b) come up with an alternative and c) take some kind of lead or action that will make the alternative work.

Starting a lobbing group against a proposal is not going to achieve anything except alienation.

DS' OT told me that ds concentration is a bit like if I was trying to do a challenging maths exam with a very full bladder.

I find the maths challenging anyway, but the bladder is a distraction. My motivation can override my need for the loo to some extent, but there does become a point when I no longer give two hoots about the exam and just focus all my thoughts on how and when I can get to the loo.

Kungfu, I think you are brilliant and others stand out such as zzzz and starlight always. My DS with severe ASD is 18 this year and you have given me new and interesting thoughts when I thought I'd done it all! I have done LOTS, just about every permutation of "care" and life and involvement you can think of but this has given me lots to think about.
I do take issue with Leithlurker's characterisation of the middle class as hard to reach, does that mean smug and I'm alright Jack? The white middle class gets easily demonised but these are usually the people starting the charities, setting up the schools and running the support groups ime. There are good reasons why this is the case but please, give us a break on the class war!
I don't want this campaign to be about showing how our kids are just like yours but you can't see it, I think it could be about them being very different iyswim. Anyway, I think a campaign that harnesses the power of MN is fantastic and, you know what, I will support it whatever its like.
Mwah mwah

What Davros said. Plus, I'm behind this campaign because, within reason, what it is about isn't the point. It is the campaign itself that is the point.

My ds is one of the many who will have a dependent or independent life depending on the stroke of pens. My life's work is to get those signatures. It's desperate, and the most important thing to us. I doubt that any campaign that comes about will be about that or necessarily benefit my ds.

That is hardly the point. Ripples make waves.

I completely agree with that Star. This campaign isn't about my DS - 'campaigning' about my DS is my job. It's what I do every day when I challenge people who don't 'get' him, when I answer thoughtless posts on here, when I speak to the HT again, when I budget for the therapy he needs but is 'too high functioning' to get.

This campaign is about changing attitudes and challenging ignorance. It can't be all things to all people. It is what it is.

Amen!

Brilliant again kingfupanda

Well said Kung-Fu, and very touching about doing it for your mum.

And you are right that you get more with honey than with vinegar. If we do a campaign that just says "sort yourselves out, you bigoted twats" we won't win the hearts and minds battle! Like also your child to adult second-wave campaign idea.

Every considered becoming an ABA therapist Kung?

It's sad that people gave got hurt yes. Let's get going and see if we can pick them up somewhere along the way!!

Great post Kungfu, brilliant ideas IMO.

Very well said Kungfu.

I love the 'and who are you/what sort of person are you' idea, because as you said, it challenges people to address their own attitudes and think about their own behaviour, rather than asking/telling people to make allowances/include/excuse/accept. It shifts the focus from the people with disabilities, who aren't the ones with a problem, onto those that do.

I nearly ducked out of this thread earlier today - so tired and poorly at the moment that I couldn't cope with all the emotional upset. I'm so glad I didn't and stuck my head around the door again, because I think, for me, you have hit the nail on the head.

'Compliance is important for being able to teach a child, but you have to remember that blind compliance also leaves a child very vulnerable. No attempt should ever be made to 'break them' into the mould you'd like them to fit.'

Yup: ds3 is completely compliant to the level of his ability and actually it works against him- why address the needs of the one who is no problems when another is kicking off in the corner and throwing a chair? We thought we ahd passed that when we got him into his lovely Base, but now LEA want him to go to MS Comp without help for the same reason. He'd last 5 minutes and then quite likely disappear, no chance. We tried MS, it failed, we stopped.

Whereas ds1- he could probably do with a bit of breaking but his Base ( a different one) works well with his needs as they do get it: he seems pretty much unbreakable but a skilled teacher is working with it- and getting results. I am much happier with it that way. I don't think sopciety broke me yet, I still have my rebel campaigner streak, and whilst it's not all good on balance I prefer it that way. This and a manual of friendships and political crappy minefields and I;d be away :)

I'd like a campaign to be purely on changing the name of the new 'Education and Health Care Plan', to 'Education and Health Care Rights'.

'Plans' go awry!

Yuss kungfu.

'You change. Because you can.'

Don't be gutted, Kungfu.

Some people are feeling a bit raw, and that is unfortunate, but understandable, given their circumstances.

It's even more unfortunate, though, that rather than engaging, they're stamping their feet and engaging in serial flouncing (seriously, either stay or go, but stop coming back and telling us you're going because it rather loses its impact after the third time). When DS1 does that, I stop listening until he can drop the dramatics and talk to me calmly.

The majority of people are relating their thoughts and experiences, however disparate, in a way that might enable the seeds of a campaign or three to grow. I think the hardest thing now is working out where we want to start.

The thing about focussing on children is that people will quite often 'forgive' in a child what they would judge in an adult. I think it would be easier to get people to think positively about children with SN to start off with, even if you are relying to some extent on the sickly, oh isn't he sweet, factor.

Quite. DS2 is 6.5. When he's jumping up and down and squealing, reactions vary from shock (he is quite loud) to smiles because he is quite cute. If he's doing that in 10 years time, 2' taller and with a deep voice, people are bound to be less charmed by it and he's more likely to be openly ridiculed. The more educated and aware people are, the fewer people are likely to ridicule him and get away with it without censure from their mates.