'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.

Sorry - was in a bit of a ranting mood yesterday, bad therapy session!

My more thought through ones would be:

Myth: All people with Down's are happy
Reality: People with Down's have exactly the same range of emotions as any other person

Myth: LEA give Statements out to any child as it improves the schools grades
Reality: Statements are incredibly hard to get. My DD has Down Syndrome, is deaf, has poor vision and mobility issues and I still needed to spend 6 months of almost daily assessments to prove she needed help

Myth: Your child can't be deaf, she can speak
Reality: There is a spectrum of deafness, but she can still only hear certain letters

Myth: All people with Down Syndrome are the same
Reality: There is a spectrum of ability, just like with any person, therefore just because your boyfriend's, mum's neighbour once passed someone with Down syndrome on the street, does not mean you know what my child is like

Myth: Parents of SN Children prefer to only mix with similar people
Reality: Being a parent of a SN child can be incredibly isolating. yes, our child has a SN, but we still fundementally have the same needs as you. Please come over & say "Hi", we promise we won't bite!

As to ways of coping:

Professionsals:

Yes, in an ideal world all services would be beautifally aligned, but the reality is they're not. To get the most out of the services, you need to:
(i) become an avid note taker
(ii) network across the various health providers / council
(ii) Be assertive
(iv) Project manage

General publc:

1. Rudeness I know it's upsetting, but some people are just rude / ignorant. Don't rise to it, just smile & feel sorry for the fact that they will never get to know someone as wonderful as your DC!
2. Assumptions Sometimes people make assumptions based on their lack of knowledge It doesn't necessarily make them bad people; educate where the person wants to learn or smile and walk away when they don't
3. Pick your battles You will face enough daily fights for your DC, so sometimes it's best just to let things go!

Myth: my child looks disabled therefore it must be easier for me than it is for parents of children with "invisible" disabilities (and this comment came from a mother at a children's epilepsy support group; I didn't bother going a second time).

myth: Tourettes is that condition were the person swears
reality: Not everyone with Tourettes suffers from involuntary swearing, infact only 10% of sufferers do.

myth: You are imagining these tics!
Reality : I am not. If a person has vocal and motor tics lasting for more than a yr, it is Tourettes. Sometimes the tics happen so quickly if you blink you can miss it.
Reality: Just because most tics are normal body movement doesn't mean its not a tic. You need to be aware of the the context in which said tic happened.

myth: Well your ds looks fine to me, where are the tics you mentioned ?
Reality: Children sometimes hold in their tics if in unfamiliar surroundings, but then let them out in the safety of somwhere else like home.
Reality: They are not performing monkeys.

Wonderful campaign thanks MN

You already have brilliant posts above so can't add to much but a few things that have upset me recently:

BLUE BADGES: yes I still use a M&B space at the supermarket for dd who has mild CP and tires easily. She's 6 and CAN walk but doesn't mean she finds it easy. As we've said, blue badges dont grow on trees so other parents, please don't give me dirty and hostile looks for using a space - your toddler can probably walk better than my 6 yr old!

WRT disabled children taking up too much time and resources in class, I had a parent say to me recently that they were unhappy that their child was being asked to help my dd with the straps on her 'special chair'
at school. Apparently it was too much of a responsibility for her

Just wanted to say - great campaign

There are some excellent suggestions on here - don't really have anything wise to add.

Having just last week received an AS dx for DS1 (9) as well as DS2 (6), who is already diagnosed, I just want to say - "these are my children. Yes they are challenging. Yes, there are some things we struggle to do as a family that many of you take for granted. But I wouldn't change them for the world..."

Here's an annoying sentence, not a myth:
He's fine with me

I'd also like to see some of the ASD myths busted.

I am truly stunned at the number of people who still don't understand autism is in fact a spectrum disorder.

My daughter has HFA and I am repeatedly told by strangers/friends/family that she can't possibly have autism because:

she has a sense of humour

she talks/mingles with other people

she doesn't scream/shout/cry/hit all the time (meltdowns are very rare actually, perhaps 1-3 times a year)

she has an imagination

she is bright, but not a genius (Rainman... that film has a lot to answer for)

I've had her in tears all morning because she is panicking about having to sing with her class in assembly today. She is worried about the noise, and thinks she won't be allowed to cover her ears because she has to keep her hands joined in prayer (Catholic school).

She eventually calmed down when i assured her she can sit with her teacher or can cover her ears.

I know full well that when she goes to that assembly, she'll pretend that her ears aren't sore because of all the noise, she'll stare straight ahead and will sing her heart out. No one will know a thing about how worried/tearful she was this morning.

She's 5!

Girls with HFA are apparently much more likely to try and fit in with their NT peers, which is why their behavior is normally worse at home, because they've been cooping everything up all day at school.

I have DC with ASD and deaf DC. Nothing has been mentioned about having craniofacial differences. My DD is due her 26/27th (been so many I've lost track) surgical procedure this August. She has had 13 years of stares, pointing, disgusted looks and comments and whispers - all because she looks different. She notices, I notice. Somebody put on here earlier "Care don't stare". That would be nice.

This is fantastic, MNHQ! Still pmsl at Starlight's request that we finally find out for once and for all, how old Einstein was when he started talking. DH and I have taken to adding a couple of years to his supposed age every time we mention it. I think we're at about 37 now.

I think it would also be wonderful that schools dedicated some time discussing disabilities with their pupils. i realise this is not part of your campaign, but i'm just mentioning it as an aside.

Surely it would encourage understanding/compassion among everyone, perhaps preventing another generation growing up with disabilist attitudes.

I personally feel that so many people are disabilist because they are genuinely scared of the unknown. Perhaps if they knew more about disabilities/the effects of disability in a person, they'd be far more understanding.

Myth: Educational needs and medical needs are separate issues.
Reality: If the school/LA refuse to meet a child's medical needs how can they possibly attend in a fit state to learn?

Myth: Children with medical needs and disabilities without SEN have enough legal protection and don't need to be covered by statements/EHC plans/etc.
Reality: Many, many children in this situation are being failed and parents often don't have the time, money & energy to fight in law courts using the equality act.

myth: people with disabilities don't can't or shouldn't have sex or have children.

myth: said people will be disappointed if their DC have the same disabilities

Myth: said people will be glad if their DC don't have the same disabilities.

Reality: I love all my DCs.

I personally don't mind answering other peoples or DCs questions and prefer to educate random curious 3yr olds rather than having their DMs dragging them away shushing them blushing madly. But I realise this is not for everyone.

Anything you can do to reduce hate against people with disabilities would be appreciated.

I've not known hate like I've experienced in the past three years and I have life long disability myself.

So some focus on the 'not scroungers', not getting something for nothing, not taking from 'you' aspect would help.

I've faced criminal damage and taunts because people think that as there is disability it's fair. The media stirring it hasn't helped.

Oh, and let us know where to send pics...

I lost my son, Nihal, who had cerebral palsy, 12 years ago. Looking through this thread, I feel sad that so many of the issues remain despite the battles we fought. I got Nihal into a mainstream school, at a time when he had no 'right' to choose his school. We took our case to the Special Needs Educational tribunal and won although he was non-verbal and it took a lot of 'proof' and testing (what an able-bodied child would never have to endure) to show that he could keep up with the curriculum. I have a written a one-woman monologue which tells the story of our life, our triumphs and struggles, his cheekiness, his tendency to swear when he finally found language which is being performed until 22 June. thecockpit.org.uk/show/dont_wake_me

On 19 June, Richard Rieser, a formidable disability rights campaigner who's an expert on inclusion in mainstream schooling, will be holding a post-show discussion where he will be looking at how to deal with some of the issues raised in his thread. I'm sure he would be happy to answer/advise one on one after the main discussion if anyone's interested.

MNHQ do you mean tips for families of SN children on dealing with the public?

Or tips for the 'general public' on how to approach families with SN children?

I think the latter is the crucial thing, and would fit in with the campaign.

@bialystockandbloom

MNHQ do you mean tips for families of SN children on dealing with the public?

Or tips for the 'general public' on how to approach families with SN children?

I think the latter is the crucial thing, and would fit in with the campaign.

We did actually initially mean the former (following a couple of reports of a thread a few weeks back in which the brother of a child with SN had been put in the position of needing techniques to 'defend' his brother, who was being subject to some abuse by other children) - it was suggested to us that we might want to collect coping strategies for these situations.

However, tips for the 'general public' on how to behave like a civilised human would also be good - fire away!

My son has Duchenne Muscular Dystrophy and associated learning difficulties. He turns 8 this week and is currently still mobile but is slowing down and is using his chair more and more. He DOES need to use his wheelchair - just because he can still walk doesn't mean that his legs get tired very quickly. He is NOT fat, he takes a high dose of steroids to keep his muscles working. My motability car is not free and I don't get "loads of benefits".

Ok, thanks.

Presumably you don't just want the glaring/what are you f-ing staring at kind of tips, no?

As for tips for the public on how to approach us, here's my list:

1. staring is just about the worst thing you can do

1. if you're really interested in my child I'm happy to talk to you and tell you all about him

1. if I look like I'm struggling perhaps I am, and could do with a simple "can I help at all?"

1. I don't actually always have the answers, or know why my ds is doing something, or what to do about it, any more than you do

1. the best thing you can do is be interested in my child as you would be any other child though of course other children aren't as interesting, clever, funny, cool, kind, and downright fabulous as mine

I would like some mention of the fact that many people with disabilities do not have a diagnosis, people can have multiple, complex and severe disabilities and years worth of investigations and still have no diagnosis.

Even though most people do not realise it,having an undiagnosed genetic condition is actually quite common.It is thought that about half of children with learning disabilites and in approximately 60% of children with multiple congenital problems do not have a definitive diagnosis to explain the cause of their difficulties.

As undiagnosed children a common diagnosis is a coverall, global developmental delay - this does not mean that a child will 'grow out of it'.

I think the campaign is a great idea.

My child has an undiagnosed genetic condition, with multiple health problems, and no speech - he laughs a lot, and loves firemen, helicopters and people falling over.

By the way, the bold bit is from SWAN UK, who support families with undiagnosed children ( Syndromes Without A Name )

Okay. If a member of the public stops and stares when you are struggling, said loudly 'oh thank you SO much for stopping to help. Here, hold the bag/other child/basket/oxygen tank/trolly'.

If you have been begging for help for several years to no avail, make business cards with you social workers name on and telephone number with the message 'do I look like I need help? Perhaps they'll listen to you!', to hand out to the crowd during a challenging situation.

The main myth I would like busted is that the NHS provides the therapy needed.

It does not. I have a child with cp who cannot get hydrotherapy, as my county doesn't provide it, who cannot get enough physio due to staff shortages, who cannot get splints for months after he has outgrown the last ones (again staff shortages) lycra for 3 months ditto staff shortages.

The next myth is that even if you get DLA it can fund the gaps which exist. I spend 2-3 times as much on my ds condition as I get in DLA, and even then I struggle as it is very hard to provide private therapy when the NHS aren't funding therapists/

I would also like to emphasise that the postcode lottery is alive and well in most medical and educational provision, and what you get does depend on when you live.

I would also like to bust the myth that working with a disabled child is easy. I frequently have appointments on different days of the week. There are very few jobs that allow that degree of flexibility. Which is why carers allowance is extremely necessary and good value for money.

'They all get there in the end'

'My father's uncle's parakeet didn't talk until he was 4 and he now works a diplomat for the foreign service and went to Oxford'

Etc

'We're all on the spectrum somewhere'

No we're not!