'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.

Oh God yes.

Please don't ever, ever refer to me as a special mother

All that does is reinforce the idea that me and mine are set apart somehow. The last thing on earth I want.

Children with disabilities can be loving and need love and tolerance, just like any other children.

My dc isn't overweight because I feed him junk food. He has sensory difficulties and can only tolerate certain foods.

My dc isn't overweight because I don't provide him with opportunities for sports and physical exercise. He has poor coordination, low muscle tone and joint pain.

My daughter isn't underweight because she is faddy and I spoil her.

'that child is just clingy because he's the youngest/babied/spoilt'

No, he has massive anxiety issues, talking about him over his head while I'm trying to peel him off me at the playschool door is not helping with that.

'He probably just doesn't bother talking because he's the youngest and the others talk for him/get what he wants anyway'

No, if only. Instead we had hours of screaming because nobody knew what he wanted

'He makes lovely eye contact/speaks well, he can't have ASD' (said most often by HCPs!)

No. Just no, I'm not even going to justify that one with an explanation

'Have you tried a reward chart?' (again, HCPs!)

I could go on all day but what it all boils down to is that people don't seem to understand that a child with no obviously visible disability may still have profound neurological and physical issues.

Looks great MNHQ!

For 2% of children with disabilities, mainstream activities are not appropriate so offering to provide a carer/befriender to take them is not helpful.
The parents are not being over-protective rejecting this offer - they know through trial and error that mainstream activities are not suitable for their child. They may look physically fit/like they could enjoy hockey or sailing but they are UNABLE TO PARTICIPATE BECAUSE OF THEIR DISABILITIES.

(Sorry this has gone in capital letters because it is aimed at people who should know this but they are trying to spread their budget so thin that they have forgotten and need a nudge)

Thank you for this campaign MSHQ, it is great - I am happy to help in way you need.

That first post was on behalf of my ds.

Now for my dd who is visually impaired:

1. I know a lot of people wear glasses - this is usually to correct their vision - but the vision of people who are visually impaired cannot be corrected by glasses, it improves it but does not correct it.
2. I know she does not look blind, she does not crash into things - this does not mean she is not visually impaired.
3. Never ever sit her at the back - why is that so hard to remember?

Sorry I meant 'MNHQ' in the first post

Fantastic, well done MN.

I would like people to know that "this is my child & he is perfect"

Myth - Children with autism are all the same... wrong, they are as unique as you or I.

My son has autism, cerebral palsy & learning difficulties but he still gets upset if people stare & talk about him as if he's not there!

Please be kind, he is my child

being pleased that your socially adept child wants to invite home a child with SNs

Polter I totally agree, that is so important (as long as it isn't in a patronising/smug way as an act of charity, iyswim)

1:1 support only makes the child dependent if the 1:1 support is rubbish, undertrained or inexperienced.

Parents of children with disabilities don't want 'funding' for their child, they want an adequate education. If that comes in the form of an experienced volunteer then that is fine.

Please don't deny my child their rights because you have come across someone who is, in your opinion, more severe/needy/worthy/poor/vulnerable that has less. Please fight for them, instead of justifying to yourself the removal of my child's provision.

Myth: My child looks happy and is not badly behaved therefore she must be fine.
Reality: She is struggling to cope with existing whilst doing her best to not upset adults around her and inside she may be a whole heap more stressed than you can imagine. This will later come out at home where she feels secure as tantrums and tears. Please be sensitive to her needs when I explain these to you instead of dismissing me as a neurotic parent.

Myth: Parents want a label for their child so they can get a step up the ladder compared to other children by getting extra support at school.
Reality: Most of us have been through the mill of assessment and diagnosis prior to getting an accurate answer and the emotional stress is more than many will imagine. Support at school is not that easy to get even with a diagnosis in some cases.

Myth: All children with ASD will be badly behaved and maybe violent with no eye contact.
Reality: ASD really is a spectrum and each child presents differently. Those labelled as high functioning may have better communication than classic autism but they can still be severely affected by their difficulties. Not only that but girls in particular can be very clever at hiding their issues and on average are diagnosed a lot later than boys as even professionals will not always see the issues easily.

Around 1 in 52 boys have autism. That's quite a significant percentage of the population and you're likely to meet them on the bus, in the supermarket, at school, at work and possibly even marry one.

Add the rest of the SN population and they aren't such a small minority. Help them to get intervention and tolerance early enough to enable them to become as independent and as contributing to society as they are capable.

The UK is way behind other countries, most of whom have precious little in welfare state provision and simply cannot afford to ignore the needs of their most vulnerable in their early years as we do in the UK.

How about the myth that all parent partnership services support parents - they dont or the myth that local authorities are accountable for SEN failures or the myth that inclusive school policies will be evident in reality- they are just there for Ofsted. Or the myth that Ofsted gives a dot about children with additional needs or disabilities - thats just for show too or the myth that SENDIST panels promote equality in their findings!

Am I having a bad day or what?

Oh 2tired . So so sorry. No idea whether it makes you feel better or worse to know that you're not the only one that has been there.

Yes. The myth that LA's are accountable for the provision of SEN. The truth is that assessment is never independent of funding implications as the LA both conduct the assessments and provide the funding. Financial incentives to deny need.

mymatemax

"This is my child & he is perfect"

I absolutely love that you put that

My son has autism and selective mutism. The autism bit is well covered in other posts but for the SM bit:

It's not ELECTIVE mutism, it's SELECTIVE. My child has no control over the anxiety that causes the words to freeze in his throat. He is not choosing not to speak, or being rude or controlling. He is overcome with anxiety, frozen with fear, in the way others with different phobias might be when they see a spider or a needle.

Selective mutism is NOT linked to trauma. There is a condition called traumatic mutism which is triggered in response to a huge stress situation, such as abuse. Children with selective mutism are no more likely to have been abused than anyone else.

For schools: Even though my child is not noisy, disruptive, or badly behaved, it does not mean that he does not need a significant amount of support and intervention. Please don't pass him over because he is quiet.

First of all, thanks to MNHQ.

Then..

• my child has ASD, but he is not "just like Rainman".

• my child has ADHD. It is not a made up excuse because he is spoiled or not disciplined. It is real, and he does not just need a smack. And no, giving him to you for a couple weeks would not "straighten him out."

• using a wheelchair doesn't necessarily mean he can't walk. It means he has disabilities that sometimes require the use of a wheelchair. There is a difference. (Not a child, but Cherylee Houston on Corrie is a good example of this)

• he's not having a tantrum, he's struggling to cope with something - generally sensory overload

• where there is one disability, another often goes hand in hand - such as ASD/ADHD/hypermobility/dyspraxia, etc.

• Maclaren Majors (and other SNs pushchairs) are the equivalent of a wheelchair for children. Parents generally cannot just fold them up like standard pushchairs on the bus - they should be allotted the wheelchair space just like any other wheelchair user.

• SNs pushchairs and wheelchairs are expensive and can be quite difficult to manoeuvre through shops, on buses, etc. Parents are not likely to have their child in them unless they really are needed. Use common sense in that regard please. And making comments about "older children in pushchairs" and "lazy parenting" and such are not particularly helpful.

• they are children, not just a disability.

Marking place. Will come back later.

I don't have a disabled child, but it makes me cross when people refer to children as "the Down's Syndrome child". He or she has a name, but if you don't know it, then surely "a child who has Down Syndrome" is better?!

• A diagnosis is not a label for behaviours that all children display, it is a medical opinion that a child has significant difficulties compared to a typically developing child.

• A diagnosis for a condition like autism or ADHD is never ever given just because a parent asks for it, there is a long process of assessment, sometimes lasting years, where several medical experts decide whether a diagnosis is warranted and what that diagnosis might be.

Morning everyone

Thanks so much for all of these - there are some brilliant ideas here

Any more tips for dealing with unenlightened members of the general public?