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

401 replies

RowanMumsnet · 10/06/2013 12:51

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.

OP posts:
tabulahrasa · 18/06/2013 19:09

The thing is Jake, in my opinion anyway, that you can only affect real change for services if you first change attitudes...so it's a good move forward at least.

Mumsnet is primarily aimed at parents, there's a large community of parents using it for support with the SN affecting their children, so it makes total sense that it's about children.

My poor hatless DS is 17 and you're right adult services is a scary prospect.

zzzzz · 18/06/2013 19:11

This reply has been deleted

Message withdrawn at poster's request.

Dawndonna · 18/06/2013 21:24

Not everyone with Aspergers is good at maths.
An imagination is not a sign that he/she doesn't have AS.

Two of mine will be reading Lit at uni. They are both AS.

One is doing philosophy, she is also AS.

Dh, also AS did Lit and Philosophy.

The most recent research into Autism suggests that it may not be that people are unimaginative, but that in fact it may be too much imagination, as with many Aspies, how far is too far, this can and does seem to apply to imagination, too.

GobbySadcase · 18/06/2013 22:00

Not necessarily, tab.
I know of more than one person who is going through the frankly laughable transition process and could have done with a bit of support round here. But no... Cute kids is where it's at.

RowanMumsnet · 19/06/2013 10:13

Hello all

Thanks again for the input (including the criticisms - we are reading it all, honest).

We just wanted to let you know that we're aiming to launch this in early July; please watch this space for more details.

And please do keep sending in your photos - we've had quite a few now (and hopefully those who've sent will have had a reply from us!) but we'd love to have some more.

OP posts:
hazeyjane · 19/06/2013 10:19

Well Gobby, 'cute kids' with sn aren't seen as that 'cute' when they are screeching or flapping in cafes.

Rowan looking for a photo of ds (who is a cute kid, I'm afraid!) to email now.

GobbySadcase · 19/06/2013 10:34

Oh I know. Meltdown snot ain't cute.
Mind you they are when they're asleep for all of an hour

Just saying when they're the size of brick outhouses and STILL having meltdowns the reactions are going to be worse.

Plus crappy transition

RowanMumsnet · 19/06/2013 11:04

Cuteness is brilliant, but non-cuteness (however defined) is also both brilliant and welcome.

As we said below, we do know that this campaign isn't comprehensive. (You can see more in the OP about how and why we came to the plan that we have.) But we do hope that an effective awareness-raising campaign of this kind would have a ripple effect, making the broader population question their ingrained responses to physical, behavioural or cognitive 'difference' among all age groups.

We're certainly going to be including some 'myths' that apply to a much broader group of people than 'cute kids'.

OP posts:
ArbitraryUsername · 19/06/2013 12:31

BlackeyedSusan: I was commenting on the several teachers on the bloody awful cafe thread who seemed to think that being able to control 30 children had anything to do with the topic at hand. I didn't mean that they were actually superior and could 'sort out' children for their parents (although those making the comments obviously do think that way).

Of course, judging by DS1's experiences at school when he has had a melt down because of the teachers', it is all his own fault and a problem with him. If he does it with me, it's down to my parenting. Hmm

zzzzz · 19/06/2013 13:42

This reply has been deleted

Message withdrawn at poster's request.

BlackeyedSusan · 19/06/2013 20:46

I got that Arbitary... just giving evidence that you were right and they were ignorant/arrogant/misguided... and a word that will not be repeated for fear of letting it slip out in school. Grin

oh yes, and the child has the melt down with the safe parernt as the bloody teacher has wound him up all day by shouting/letting children shout/getting the loud musical instruments out/not telling him tht a supply is coming in/and aany other thing that generally upsets things... and of course it is not the teaches fault at all... oh no!

sandwichyear · 19/06/2013 21:23

What I would find helpful would be some positive advice too, not just negative. For instance, a deaf friend once gave me some really useful advice (sounds totally obvious now but i perhaps stupidly hadn't thought about it before) about things which helped her, including making sure I was full face looking at her while talking so she could lip read, not sneaking up behind her etc. There seems to be lots of advice here about what not to do when encountering a child with SN but not a lot of practical advice about things which might be helpful/ what is a good way to behave in certain complicated situations.

Great campaign, thank you!

doormat · 20/06/2013 15:43

I feel this is my child and the pics you send in of your kids is a scam to promote inclusion from what is imho a very negative website of sn community....this is commonly known on the web that mnhq are not supportive of parents of children or adults with sn

Instead of trying to sugarcoat mythbusters i think mnhq needs to take a hard long look at their policies of anti disablist comments and treat them like racism and. Other degrading comments towards other members of society like homosexual, ageist..list goes on...

As for the term additional needs...i think it is wrong...special needs is much better andencompasses the range of meaning of being disabled as it will only complicate matters furthur...
Even though i despise the term special needs...nothing special about attaching feeding tubes and oxygen to your child, or seeing them go through so much pain and have no quality of life to be demeaned and degraded by looks, stares, comments, disablist posts on here...
There is an old saying that you dont know till you walk in someones shoes....how apt

Do any admin on mn have any children with sn?

If so you would know what it is like to have to constantly battle with nhs, schools, govt agencies, housing, social services for things our children are entitled to...let alone battle against ppls misconceptions on disability as so many of you have tried to explain...and then to battleit will fall on deaf ears unfortunately

I feel the use of these childrens pics as i said earlier is to benefit mn not the children of parents on these boards....if that was the case disablist posts would of been deleted as fast as a blue ass fly on dung....

Orli · 20/06/2013 15:44

I think it's a great campaign! my son (4) has OA (ocular Albinism), which means he doesn't look any different than any other blond child out there, but his vision is impaired. He is, as one of the professionals put it, one of the invisible kids. That is why it is so hard for us to get people to understand and give him the help he needs.
I guess my myth will be exactly that - he looks so normal!
As a child with vision problem he also likes his routines very much, and no, it doesn't mean he is "on the spectrum", nor does his dislike of loud noises!
I don't get a lot of people staring at us on the street, but those who hear our story usually go with the "you just have to love him" comment which just makes me furious...
Anyway, as a parent to a child with SN, I just want to say again that I think it's a very important mission you took upon yourselves - to educate the public and help the kids. Thanks :)

doormat · 20/06/2013 15:53

Also why not ask for pics of children with no disabilities....

Why because parents of non disabled kids will be up at arms at the thought of their childrens photos...eith a caption i like star wars could be used for some paedophile to get off on...the web is not a safe place as we all know especially for pics of innocent children

Eyesunderarock · 20/06/2013 16:29

DS is physically attractive, and can PFN for hours.
He doesn't get the idea of girlfriend as opposed to friend, he doesn't understand all the unspoken signals that girls try on him, he takes everyone at face value.
Sadly, as he is now chronologically 18, he may be one of those men who gets endlessly whinged about on MN and other places, 'he should know, he doesn't understand, he ought to realise, he's ignoring me...'
Unless he gets someone who understands him, and who actually uses words and clarity of thought to express what the problem is, rather than relying on telepathy, sighing and meaningful glances.
His best friend is female, he thinks she's wonderful. I knew a lot about her before we met; interests, talents, what her hair was like, what subjects she was studying...
He omitted to mention that she was a comfortable 14+ stone, it was not relevant to their relationship.

Eyesunderarock · 20/06/2013 16:30

I like the idea of a random selection of children, and then 'Spot the disability'
That's right, you can't.

EllenJanesthickerknickers · 20/06/2013 16:43

There, sent a photo of my tribe. You would struggle to spot which one is autistic! (Until he moves or speaks! Grin )

Tutak · 20/06/2013 17:39

This is a great campaign; as younger sibling to a 57-year-old with autism and LD, I've heard a lifetime of stupid comments from the public (' a good slapping would sort him out'; 'I don't care if he's artistic, my child's good at painting too but I wouldn't let him get away with that kind of behaviour' And post-Rainman, 'ooh, what's his special gift?' - answer, none. He's not here to do tricks for your entertainment, less than 2% of people with autism have savant abilities. Ironically, it's got easier to deal with the public as my brother's aged, since adolescence it's been obvious something is different about him, it's not just 'bad parenting'. Also, he's calmer and less anxious when he's out and about, - I wish my mum had lived to see how much better things are for my brother, it's not that the autism has gone away, just he grew older and calmed down.
I'm also the mum of a 9-year old DS with a completely unrelated genetic disorder but who does have SEN/speech problems - result: professionals advising me to 'take the ASD diagnosis, it will get him services' - a strategy which may account in part for the increase in ASD numbers but is just plain wrong. DS doesn't have ASD and the 'services' offered are inappropriate and would be wasted on him.
I also like a line I heard: "it's not inclusion, it's proximity" - the tendency of mainstream schools to accept a child with SEN if they come with a hefty amount of support hours in their statement which can be used to pay staff who then receive no specific training in how to educate your child but are good at walking them round the playground, tucking them away in the library, anywhere where they won't be a nuisance to other children...
There's a lovely blog by a father of a boy with ASD and cerebral palsy which I can't recommend highly enough: www.mysonsnotrainman.com/blog.html

graceleighsmummy · 20/06/2013 17:46

Just because my son has hearing loss does not mean he needs pitying and does not mean he will be bullied when he starts school. I find the older generation are much more thoughtless with their observations n comments my son has lots of friends at preschool and kids love him regardless of his speech delay and hearing loss x wish people would engage brain before they speak and perhaps think how they would react if they were in my sons place

Eyesunderarock · 20/06/2013 17:55

Ahh, that's part of the problem, isn't it?
Parents were often happy if they could pity us, commiserate with me on his rage and make bland little comments. Whilst being thankful that he wasn't theirs.
What really pissed some of them off, and generated negative comments about extra support and 'special treatment; was if he outdid one of their children on his own merits.
Which he did, in several areas.
I think many are only comfortable if those with disabilities stay in a defined pigeon-hole.

zzzzz · 20/06/2013 18:03

This reply has been deleted

Message withdrawn at poster's request.

Rocket1 · 20/06/2013 22:20

The campaign is such great news - parents with SEN kids are on their own and generally don't get any support unless they fight fight and fight again - and the fight never ends.
Myth - if your child has a recognised disability they will get support at school.
Fact - we spent a fortune on a legal case to get our visually impaired daughter a statement of SEN. We won but the stress was horrific and the process truly appalling.

elerismum · 20/06/2013 22:48

I heard this once at a support group. When asked in the street "oh, what wrong with him?", the mum answered "do you know I think he's coming down with a cold".

bochead · 21/06/2013 14:22

bump

why isn't this stickied?