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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:
Autismmumma · 24/06/2013 14:05

Love this idea, anything that helps get past the "invisible disability" gets a big thumbs up from me.
The "they'll grow out of it", "but they look so normal" and "she's off on one again" always gets me. Last comment made by a mum fully aware of my daughter's anxieties and autism.

RowanMumsnet · 24/06/2013 16:34

@bochead

bump

why isn't this stickied?

Sorry, we lost our sticky there - not sure why! We've re-stickied it now.

OP posts:
frustratedandangry · 25/06/2013 10:30

I wondered where this had gone!

Liliuk · 26/06/2013 14:19

myth: "we should wait as long as possible to diagnose a child because you don't want to stigmatise" - wrong, wrong, wrong, the earlier the intervention, the better the chances for a lifelong improvement.

Liliuk · 26/06/2013 14:35

children with ASD are not able of being happy or have no sense of humour - no true

frustratedandangry · 26/06/2013 16:40

Totally agree with liliuk, there seems to be a self perpetuating myth amongst health and education professionals that disability is a stigma and something to be avoided at all costs. This attitude makes parents feel as though they are seeking to stigmatise their child, when all anybody ever wants is help and support for their child's difficulties.
The stigma remains because we are conditioned to be ashamed. Disability discrimination is so rife most people have no idea how ignorant they are.
There is a very prevalent myth that diagnoses are easy to get, they hand them out willy nilly to parents who are lazy and only want a diagnosis to get access to benefits, there's absolutely nothing wrong with these children, at least nothing that wouldn't be cured by a bit of discipline (I have heard all this from a group of professional educated women, one of whom is a teacher). So of course, this leads to parents feeling even more judged and even more ashamed...

VikingLady · 26/06/2013 20:08

Liliuk - completely! At a rough count I'd say half of DF's family have/had ASD and I'm being dx now. Family dinners are hysterically funny. I still remember making mashed potato come out of DB's nose!

VikingLady · 26/06/2013 20:12

More of a misunderstanding than a myth, but disabled toilets are not just for people in wheelchairs or on crutches. There are other reasons you might be disabled and need that toilet, even if you don't "look like a s***r", as I heard today Angry

(s***r was actually "spacker", but that is a different, possibly worse issue. I had Words)

inappropriatelyemployed · 28/06/2013 19:30

The disability/wheelchair thing is interesting. Went to a theme park yesterday and asked if they did a carer's pass and they responded 'is your son 'wheelchair bound'?' Terrible term Hmm

He doesn't use a wheelchair so no pass for me. What is that about?

2boysnamedR · 28/06/2013 22:15

How about

It's not ok to tell a parent that 'there is nothing wrong with that child!' Then spend all your time telling said child to stop doing all the very things that are symptomatic of the condition.

Telling a parent 'well, that doesn't come from MY side of the family!'

Telling a parent ' you'd better stop having kids then'

So I guess my main myth is that you have a good support group.

2boysnamedR · 28/06/2013 22:19

On a side note is it ok as a retorte to say ' I'm glad you have mentioned that no one in YOUR family has this condition. I was wondering as I have have always found you most peculiar'

MumuDeLulu · 30/06/2013 11:01

2boys,

"Yes, the classic symptom of a severe case is a total lack of awareness"
Wink

Tiggles · 30/06/2013 21:00

inappropriately I emailed a company the other day asking if I could get a carers pass with the DSs having autism. They said absolutely, call this number to book in advance. The lady on the phone couldn't grasp that the boys weren't in wheel chairs but I could get a carers pass. The tickets have come through with 'wheelchair user' on them [sigh].

popgoestheweezel · 01/07/2013 15:56

The massive myth is that there is any official support out there. You might be one of the lucky few to have a proactive headteacher/school but that is very much down to luck. As far as the rest of 'services' are concerned there is just nothing (unless you count nodding and sympathetic noises- I don't) you and your child are completely on your own...

theDudesmummy · 02/07/2013 21:51

I agree completely with weezel, that is a huge issue that is unacknowledged

zzzzz · 03/07/2013 17:02

This reply has been deleted

Message withdrawn at poster's request.

boy1 · 04/07/2013 00:35

my lovely boy has no label as such but has a full statement of need at school. He is currently in year 1. I spent the whole of his reception year pretty much in tears. Either crying myself to sleep or taking him to the steps at school and hiding tears with a cuddle to stop the other mums seeing me crying. I have to say it was the most horrible time of my life. It puts everything else into perspective. I never explain him to strangers. Most people at school I think know he is SEN. To be honest he has the best one to one I think he could have. Fortunately he is at a very good school to deal with special needs. We have regular meetings and Im free to go into school anytime I choose. His behaviour ranges from being the sweetest most caring boy you could imagine to the most horrible boy. attacking his TA and other children. He has a low intolerence to noise. Helicopters and planes and alarms especially freak him out. He spent the first week of his life in the SCU. All I was told was he had an infection. I feel now it was much more than that. Does anyone know if I can get access to his records from this time. I have tried but have been fobbed off. If Im honest I knew from the start he was different, He is my third child and I just knew something wasnt right. this is great idea. i will send a pic of my little man.

MumuDeLulu · 04/07/2013 19:53

Yep. There's minimal help for families with SN. We're not asking for 'extra'.

Especially when you look at all the help that 'normal' families get. Help funded by grants, councils and charities which we very often can't use (A few examples of the top of my head: Sunday school, playgroups, Guides, after-school clubs, story-and-rhyme sessions, music ensembles, shared school runs, playschemes, community centre kids' parties, facilities like parks/ sports centres/ libraries/ paddling pools, youth centres, football sessions, wildlife walks...) Our opting-out must save the country a fortune.

And schools often exclude dc with SEN, while NHS services frequently list our dc's disabilities as exclusion criteria for alledgedly universal services (eg CAMHS saying 'sorry, we don't treat ASD', occupational therapy departments who 'don't do sensory issues' etc)

popgoestheweezel · 07/07/2013 22:22

Some schools do exclude children with SEN and often they have really very little idea of their lawful obligations to those children- they have never read the SENCOP that's for sure.
Many SENCOs not only don't understand the school's duty but also have very little idea about SEN in general, I've met one who happily told me she knew very little about autism- not a scrap of embarrassment about it!

float62 · 09/07/2013 11:00

Nothing to add except for my support.

coff33pot · 13/07/2013 00:37

Schools definitely exclude pupils with sen sometimes be ause they just don't get it and expect the child to understand and "conform" and some because they just don't want to be bothered that day or there is a trip on or something.

myth I can think off is that a short seminar on autism that schools are sent on doesn't make them a skilled, trained expert in the huge umbrella of severities and co morbid s.

back to the myth of plenty of support available, worried parents new to the SN world pre DX are lead to believe once referred to camhs teams that they can DX and follow through with support. That is not the case. Come a DX you are dropped like a stone from a lot of camhs services.

Shannaratiger · 16/07/2013 21:17

Fantastic campaign, all my points have already been said I think. One would be:
It is not funny to make a child who is hyper-sensitive jump by shouting boo at them repeatedly.
Yes my dd has this constantly everyday at school, if I say anything to the parents they can't understand it's a problem! We both have DCD (which causes many of the problems associated with autism) , people's lack of manners and empathy when it comes to nonNT and physically disabled people is terrible and makes our already difficult lives even harder.
Sorry i'm not good at getting to the point!

wildwood · 17/07/2013 22:55

Great idea, looking forward to seeing the campaigns in action.

My DS is 4 and has Asperger's plus a range of sensory issues, significant speech and language issues, etc. My grandmother likes to tell me he's just spoilt. My ex mother in law is very vocal with her view that I brought this on myself, because I had a baby in my 30s, his father believes there is nothing wrong, that I'm hysterical and he'll learn to "be flexible" if given a 'firm hand'. Their collective view is that ASD is a modern, made up condition, used by over anxious parents who just don't manage their kids behaviour properly.

Dispelling any of the above myths would be wonderful!

Lucie1979 · 29/07/2013 19:24

Love this! My son is Autistic and people can be so ignorant! "He doesnt look like there is anything wrong with him!" Or when you tell someone about his Autism you get the response "Oh! I am sorry!" Don't be sorry, its not terminal, he isn't dying! Infact he is amazing! :)

Lucie1979 · 29/07/2013 19:26

Also.... previous schools SENCO (just moved him in January... you will see why with the following sentence!!!)... said to me just after he was diagnosed.."Well now he has been diagnosed with THAT, there are loads of jobs he won't be able to apply for when he is older!!"