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

(402 Posts)

MNHQ have commented on this thread. Read here.

RowanMumsnet (MNHQ) Mon 10-Jun-13 12:51:07

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 contactus@mumsnet.com, with the subject heading 'This Is My Child, FAO Campaigns Team'.

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

sickofsocalledexperts Mon 10-Jun-13 13:39:58

Fantastic news, thank you. Putting the power of Mumsnet behind those of us dealing with our children's SEN means a lot.

One myth I would like to tackle is that words like retard or mong aren't hurtful and are "just a bit of fun" or "ok because everyone else uses them, even in Hollywood films".

My son has autism and learning difficulties, but calling him a retard is as hurtful to us as a racist word would be.

The other myth, or rather an old style of behaving that I think needs reintroducing for a gentler society, is "it is rude to stare". "Care, don't stare" would be my mantra.

My boy will make funny movements and sounds in public, and I understand that children will stare, but adults should know better. We were always taught it's rude to stare, but today no-one says that. It is hurtful to be gawped at, or abused, when out and about. Let's make it unacceptable to give abuse to the disabled, just as it is now totally unacceptable to level racist abuse.

googlyeyes Mon 10-Jun-13 13:57:05

I very much appreciate this campaign going ahead, and This Is My Child is great. Because DS1 IS my child...I carried him, gave birth to him and love him and want the very best for him, in exactly the same way as my other 2 children, and in exactly the same way as parents of NT children.

Awareness is definitely improving, particularly re autism, but there is some way to go.

As sickof says, staring is one of the worst things. If ds1 is kicking off in public the VERY last thing I need is anyone gawping. He is NOT a freak show, just a frightened, overwhelmed little boy who doesn't know how else to express his frustration other than melting down. That is part of his disability, and something completely out of his control.

coppertop Mon 10-Jun-13 14:07:52

I'd love to see some of the ASD myths busted. These might be too specific for your campaign but I'll add them anyway:

He/she can't be autistic because they:

- make eye contact

- are affectionate

- have an imagination

A more general myth would be when people assume that all children with a particular SN are the same. This one is usually followed by something like: "Well my neighbour/sister/cousin has a child with that and they can do XYZ, so your child should be able to do that too!"

There was a recentish thread on MN which illustrated this perfectly. A parent was unable to get their child with ASD to school on time in the mornings due to not being able to wait at the gates. I think there was also an issue with lining up in the playground.

This was followed by many posts along the lines of "Well I can get my 15 children to school on time, and we have to get there via the Himalayas! Why can't you manage?"

Sadly there were even a few who said, "My child has ASD and gets to school on time every day. Why can't you???"

So it's not just people with no experience of SN who may need to be reminded of this point.

sickofsocalledexperts Mon 10-Jun-13 14:10:39

What is that phrase like "if you've met one child with autism, you really only know one child with autism" or something like that? Meaning they re all so different, just like all nf kids are different

FancyPuffin Mon 10-Jun-13 14:11:38

In rush so can't post properly but just wanted to that I think that's a fantastic idea for a campaign and thanks and [gin] for HQ.

babiki Mon 10-Jun-13 14:16:38

... But he looks 'normal'
- this has been coming up again and again, was even told by paediatrician last week that we are lucky ds looks normal.

Both the word normal and the assumption that disabled children always look different are wrong.

Bluebirdonmyshoulder Mon 10-Jun-13 14:27:36

The campaign sounds excellent, thank you.

I love sickof's 'Care, don't stare' mantra. A really excellent point.

Also can you do something about the word 'normal' and how the word 'typical' is a much much better word. Something like, 'when you talk about 'normal' chidren you imply my child is abnoral. My child isn't abnormal, merely untypical.' Sure you'll think of something better!

Bluebirdonmyshoulder Mon 10-Jun-13 14:29:14

X-post with babiki!

Started writing my post and then went to change a nappy which is why there's so long between the two.

Oooh, fab

Myths -

1) Not all disabilities are visible - yes my intelligent, socially capable, well-behaved walking child with all his limbs does, actually, have a disability. Just because you can't see it doesn't mean its not majorly affecting him every hour of his life.

2) "Disabled" toilets are not just for people in wheelchairs.

3) No, he isn't going to grow out of it.

4) No, I can't just give him an injection / carrot / smack to make him better.

5) No, he wasn't born with it. Disabling conditions can strike at any time. And I don't think it would be any easier if he had had it all his life.

6) Telling the parent of a newly-disabled or newly-diagnosed child "well at least it's not cancer" is not helpful.

7) Just because I look like I'm coping right now doesn't mean it's not bloody difficult, alright?

Top Tips for dealing with ignorant strangers -
1)Smile, Nod, and Ignore!
2)Educate your child and his siblings about his disability, very loudly. Loud parenting rocks.

MNBlackpoolandFylde Mon 10-Jun-13 14:42:12

1) Not all disabilities are visible - yes my intelligent, socially capable, well-behaved walking child with all his limbs does, actually, have a disability. Just because you can't see it doesn't mean its not majorly affecting him every hour of his life.

2) "Disabled" toilets are not just for people in wheelchairs.

^ This time a million!
My sen dd was bollocked in Selfridges by a man on crutches with a broken leg because she used the disabled toilets because there was a massive queue in the ladies and she cannot wait.

FanjoForTheMammaries Mon 10-Jun-13 14:45:25

Wonderful!

One myth I'd like to tackle is how much training or experience the average class teacher gets in teaching children with SEN.

Almost none and that covers ALL SEN.

I think that the idea that school is some kind of salvation for children with SEN really needs to be highlighted as the myth it is.

Can someone PLEASE find out when Einstein actually started talking!

popgoestheweezel Mon 10-Jun-13 16:00:24

Fantastic campaign!
I second coppertop's myths to be busted: "I'd love to see some of the ASD myths busted. These might be too specific for your campaign but I'll add them anyway:

He/she can't be autistic because they:

- make eye contact

- are affectionate

- have an imagination

A more general myth would be when people assume that all children with a particular SN are the same. This one is usually followed by something like: "Well my neighbour/sister/cousin has a child with that and they can do XYZ, so your child should be able to do that too!"

And please don't assume that SEN automatically means aggressive/bad behaviour/uncontrollable. Children with SEN can misunderstand situations and get frustrated due to their learning difficulties that arise, but they aren't to be feared.

Oh yes, schools. The myth that they have to cater for children with additional needs. If the needs aren't educational needs, its purely voluntary. If your child has a physical disability that means they cannot attend school without support, the school can say "no, find another school".

2old2beamum Mon 10-Jun-13 17:05:22

aah Downs they are so affectionate and they love music no, they can be little rats like everyone else

FanjoForTheMammaries Mon 10-Jun-13 17:06:32

My DD must be great at maths and very serious as she has ASD..

Err no.

proudmum74 Mon 10-Jun-13 17:07:04

Great campaign, thanks MNHQ

My DD has Down Syndrome, deafness & mobility issues. Some of the myths i'd like you to cover are:

1) the phrases "Down's child", "those children" or "retarded" are highly offensive, please don't use them!
2) people with Down's are not "always happy", they have the same range of emotions as any other child
3) I love my DD, end of. No, I don't "wish I could cure her" or wish "the ante-natal tests would have been right so I could have aborted her!!"
4) I don't think "it is a shame" that DD has Down's (see point 3) & I don't want to hear about how "in my day the likes of them would have been locked away"
5) DD has learning difficulties, but she is not stupid. She knows when you are staring and/or are talking about her in front of her, so please don't!
6) statements of special education needs are not something that the LEA give out readily. Parents have to fight for months for them, so next time you tell me that "I'm really lucky to be able to just jump any school waiting list", think how you would feel to (a) have a child who is disabled enough to need one or (b) have to spend 6 months having a group of professionals send you almost daily reports pointing out, in great detail, what is wrong with your child. Then spend the next 10 years fighting for these provisions, then come back & tell me how lucky I am!!!
7) Oh, and whilst we're talking Statements, it doesn't help you jump queues anyway!

Sorry, but of a rant there! wink

proudmum74 Mon 10-Jun-13 17:17:06

Thought of some more, on a roll now! grin

On her deafness:
1) she doesn't look deaf hmm - never known how to answer that one, usually I just smile
2) shouting at her (in a similar way to an Englishman abroad) doesn't help! If anything it makes it worse as it distorts your word pronunciation.

On her mobility issue:

1) DD inability to walk was not laziness, hers or mine. We spend hours doing physio, and "just forcing her to try" really isn't the answer!

On having Down Syndrome:
1) There is a spectrum of ability, just like any other child, so please don't make assumptions about my DD before you meet her.

inappropriatelyemployed Mon 10-Jun-13 18:27:10

Einstein didn't talk til he was four

Myths:

1. You don't make a child with additional needs independent by leaving them without support

2. People with Asperger's aren't just rude, sometimes they find it hard to speak or process what you are saying

3. You can't tell whether someone has a neurological condition by looking at them

4. The system has schools for every type of child - it doesn't

5. Schools and LAs understand the Equality Act - they don't

6. Providing additional assistance to children with additional needs is a matter of equality rights not conditional charity

7. Some children just can't learn - perhaps you're not teaching them properly

bialystockandbloom Mon 10-Jun-13 18:27:46

Myth: that there are loads of any 'services' offered to families, staffed by highly qualified experts.

The truth is that there is a huge dearth of suitable, expert support, is subject to a postcode lottery (due to funding), and even if it does exist, it's a massive, massive battle for just about every family with SN in it to find out about and access such support, and then go about getting funding for it.

Basically most families are pretty much left to it, and parents have to become overnight experts.

Not sure if this will fit with the campaign, but I'd love to see this message getting out - if more people realised this it might make for a bit more general support when out and about.

inappropriatelyemployed Mon 10-Jun-13 18:29:34

Oh - and thanks for doing this!

'Parent's are seeking dx to excuse their lack of parenting skills'.

Well some 'might' but they won't get very far, - Almost all pre-dx assessments are multi-disciplinary, can take several years and particularly with developmental disabilities the parents often have to prove beyond doubt that they haven't 'caused' their child's disability in a culture that prefers to blame them rather than fund support.

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