'This Is My Child': our long-planned campaign on children with additional needs

[RowanMumsnet]

Hello

As some of you will remember, we started this thread a few months back to get your input about a possible campaign around children with additional needs.

The thread was hugely informative - thanks very much to everyone who gave their views. Many of you were asking for a broadly-focused campaign encompassing visible and non-visible disabilities among children, teenagers and adults, and across many platforms (poster advertisements, television campaigns and so on). Much as we'd like to do this sort of thing in an ideal world, realistically we're bound by the resources that are available to us. We've also found, over the years, that campaigns with a very specific focus can do much better than those with more general messages. In addition, we're mindful that many of the big campaigning organisations in this space have already undertaken more general awareness-raising campaigns to do with capacities and needs of people with disabilities, and we try not to re-invent the wheel (although we're always happy to add our voice to such campaigns when asked).

So we've decided to go with an awareness-raising campaign focused on the ways in which caring for a child with additional needs can change a family's life, and the myths about disability that can have negative impacts on such children and their carers. We're going to call it This Is My Child (again, thanks for all the input) as we think it's simple, arresting and suits the aims of the campaign best.

We're going to be addressing myths like:

MYTH: children with behavioural disabilities are just naughty and need a firm hand
MYTH: people in receipt of disability-related payments are likely to be 'scroungers'
MYTH: children with additional needs in mainstream schooling are drawing resources and attention away from other children
MYTH: it's easy to get a Blue Badge and mobility vehicles
MYTH: a non-expert can accurately judge the capacities and potential of a child with additional needs

We're going to be putting up a myth-busting page (similar to our We Believe You myth-buster here) which will be heavily featured across the site and promoted from our social media accounts, hopefully with some mainstream press coverage. We're also going to be featuring guest blogs on the topic and holding an event on Twitter using the hashtag #thisismychild; watch this space for details.

There are a few things we'd really like your help with:

1. Do let us have suggestions for myths you'd like busted (there's a limit to how many we can do, but it would be great to hear your thoughts).
2. Do you have any Top Tips for how to deal with situations in which you - particularly as a parent or carer - have been subject to ignorant or hostile responses from members of the public when out and about with your child? We'd love to put together a list of ninja ways to defuse, inform or simply get rid.
3. To go with the 'This Is My Child' theme, we're asking for MNers who are parents of or carers for children with additional needs to send in pictures of their child, which we will use for a photo gallery on the site. These can be completely anonymous and needn't be linked to your RL or MN name if you'd rather not; the idea is to personalise the issue for members of the public. If you'd be up for doing this, do please send in a digital photo (a roughly 500-pixel-sized image in a jpg, gif or png format) along with a caption (which can be pretty much anything you please: 'This is my child. He's eight and he loves Star Wars' - that sort of thing) to [email protected], with the subject heading 'This Is My Child, FAO Campaigns Team'.

Thanks for reading this far - as ever, do please let us know what you think.

Inclusion doesn't only mean physical inclusion.
Yes my ds might be sitting on the carpet with everyone else, but if he doesn't know why and there is no-one there trained to help him understand the purpose of being there, then he isn't included, whatever he 'looks' like.

The trouble is there's less common sense around, less empathy, sympathy, compassion. People seem to be too self centred all of which means people are not listening, caring, taking stuff on board.

Where I used to live, next door the couple, he was a drug dealer and she was a shoplifter, the police were forever banging down the doors, there was always fights and rowdiness, yet she would always knock and ask can she do anything with me having the bairn.
We moved to a more respectable area, one day taking DD to school in the snow with DS in his buggy loaded with cold, the neighbours grandaughter asked could they take my DD in the car, same school, space in the car, the answer no. By the time I got to school DS was blue lighted to hospital, yet again for DD to worry about when if they took time out to get to know the circumstances things may have been different.

Just something to consider.

I had a gorgeous example of gawping last night. Had to pick up my teenage daughter from a school trip, alongside 100 other parents. Took my autistic LD little boy with me, and he does his usual bouncing up and down, odd little movements. Vast swathes of these supposedly educated other parents just nakedly gawped at us.

Where are their manners, quite apart from any sensitivity or empathy? Brought up in a barn, or has society just dispensed with that "don't stare" rule!?

I bet there would be a riot if people had all been gawping for race reasons, not disability.

My usual technique, if I catch the eye of a gawper, is to do a half-smile, raised-eyebrow sort of "can I help you?" look, then smother my boy in kisses to show how proud I am of him. Amazing how quickly people look away when caught out.

Care, don't stare!

"Care, don't stare" indeed Sickof. DD's best friend told off the manager in McDonalds last week when the girls were out shopping, for staring. He apologised and she told him to "think next time!" I was very proud of her.

I'd like to see a reminder that children with SN will soon become adults with SN, and that they don't stop needing support, or deserving respect and empathy, just because they're not cute little kiddiewinks any more. I take the point about keeping the focus, but I don't see why that couldn't be worked in somewhere.

My child may not be able to move or speak but he's not deaf and he knows when you stare or talk about him and he understands every word spoken. He also knows when he's left out of all playdates and parties.
Why dont parents of NT kids include SN kids? They come to his parties but never invite back.

I think the single most important and damaging myth out there is:

"if something happens to you or your kids, you will be OK. Because this is a civilised country, and if you are "properly" disabled, you will be looked after."

It's so far from the truth that it's laughable. If that is the definition of a civilised country, we are not a civilised country. When people get talking to me about my child and the support she needs and the support she doesn't get, they are always, pretty much without exception, astonished to hear the truth. They seem to think that they have voted to spend a chunk of their tax money on supporting the truly defenceless and surely that's where the money is going?

But it isn't. The overwhelming majority of what people see as our enormous "welfare" bill is spent on the elderly*. After that it's housing benefit. And though things have got worse with the current cuts, tbh there has never been a fraction of the money needed made available. When you see stories in the newspapers about parents who kill themselves or their disabled children because they are driven to despair, that's not an inevitable tragedy. It's a budget decision. And it's not an isolated case. It's just someone a little bit more desperate than huge numbers of families who are exhausted by the constant fight to get the support they need to hold their family together. The support they are legally entitled to. The support you thought you paid your taxes for. The support they don't get.

• which isn't necessarily a bad thing, it's just a thing. We have a huge elderly population and no plan for looking after them which means the system is swamped.

I would like people to understand what it is like to fight for your child's legal entitlement.

For us it has meant 4 moves in 3 years. DS has been in 5 schools and he is only 6 years old. Removed from each of them for neglect or abuse though they were saying they could meeting his needs and fabricating evidence.

2 tribunals plus thousands of pounds in independent assessments and expert witness fees meant we had to sell our house (lucky we had a house to sell, many don't).

Child Protection defences. Files closed rapidly but stressful to go through and both times instigated to coincide with key tribunal process dates.

Thousands of pounds of our own money to pay for therapy that was indicated but not provided. Local Authorities not following national guidelines on the basis that they were only guidelines and not law.

Giving up my career not to care for my child, but to do all the admin and paperwork necessary to secure him safe environment to be educated.

Defending various allegations and correcting reams and reams of internal agency communications designed to paint an incorrect and negative picture of our family.

Having our parenting repeatedly under scrutiny.

I am not unique. The MNSN board is full of people who have gone through the same.

Just marking my place, but thank you.

MYTH. There is no such thing as disability, only failures of society to meet different needs.

TRUTH. SN are all different.

Some SN cause pain or high anxiety levels; those sensations are inherently unpleasant whatever society does.

MYTH. Wishing your child's SN wasn't there means you are rejecting the person he is.

TRUTH. SN are all different.

Some are an integral part of personality, others are more like a permanent illness. If your child is in chronic pain, you are bloody well allowed to wish they weren't. If your child yearns to do something the SN will not allow, then they have a right to be frustrated and angry if that is how they happen to feel about it.

Of course I don't mean to say that it doesn't matter how society treats someone with chronic pain. Only that even under the very best circumstances it is still crap.

People seem to think all wheelchair users are paralysed or can't walk at all. My daughter can't walk due to her poor muscle tone but can move her legs and kick out - this seems to shock people and one woman actually asked me why did I think it was a good idea to strap her into a wheelchair when she can obviously walk! Also some of the kids with her condition can walk short distances but need wheelchairs for longer distance - the stares they get!

To wish people would PLEASE stop referring to Tourettes for added comic effect in mindless trivial conversations (someone has just done it again on another thread about "Cupping CO Penis")

Reality : Tourettes is heartbreaking.

Reading all of your post gave me goosebumps zzzz

Particularly think this statement needs to be highlighted

"I'd like how we treat our most vulnerable to be a source of national pride, because at the moment we should be very ashamed."

Thanks again for all of these

And thanks also to those of you who've sent in photos - they're gorgeous. We'd love to have some more.

To save your scrolling fingers, here's the relevant bit from the OP:

'To go with the 'This Is My Child' theme, we're asking for MNers who are parents of or carers for children with additional needs to send in pictures of their child, which we will use for a photo gallery on the site. These can be completely anonymous and needn't be linked to your RL or MN name if you'd rather not; the idea is to personalise the issue for members of the public. If you'd be up for doing this, do please send in a digital photo (a roughly 500-pixel-sized image in a jpg, gif or png format) along with a caption (which can be pretty much anything you please: 'This is my child. He's eight and he loves Star Wars' - that sort of thing) to [email protected], with the subject heading 'This Is My Child, FAO Campaigns Team'.'

Thanks all

I agree with Taps, zzzz's sentence is a lovely way to summarise.

I'm happy to see this campaign on its way, but these posts are making me feel so sad and worried for DD and how we will cope when we start venturing out of our safe haven home. It's already been suggested she may be too complex for the boroughs only SN pre school and the WCS are ignoring my attempts to get a buggy that works for both of us. But I am going off subject here.
Good luck MN with this campaign, I will be watching and following carefully.

Very well said zzzz

When you say 500 pixels, do you mean actually 500 pixels? Or 500 x 500 pixels? Because 500 pixels is teeny-tiny.

@r3dh3d

When you say 500 pixels, do you mean actually 500 pixels? Or 500 x 500 pixels? Because 500 pixels is teeny-tiny.

Um. Let me ask a grown up NancyMumsnet

I sent a photo, but I have no idea what size it was, because I copied it from FB onto my ipad then sent it and it didn't tell me a size... Sorry.

Marking my place

And heartfelt thanks to MNHQ.
Mixing with 'normal' families when dealing with the nightmare that is the SN support system is a very strange experience, the nearest parallel I've found is ex-Forces staff returning to civilian Britain. But they've left the battlefield, physically if not mentally anyway, and I suspect most people 'expect' them to be a bit scarred.

You usually recognise other carers somehow. Perhaps it's the pasted-on smile on the exhausted face, or the grimly determined clumping of their unpolished shoes.