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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.

Lollypoppop Sun 22-Sep-13 21:54:47

Lovely to hear your ds is making music and enjoying it. The concert sounds great.

susanzs Wed 21-Aug-13 07:29:40

I thought you might like to hear about the band that my son is involved in. It is called 'The AutistiX' and includes young people with Autism who are making great music together, with the involvement of a great singer/carer and parents, who are either in the band or helping as a band manager and tech support. It is a family affair!

We have a project called 'Making Special Music' which illustrates the talent and potential of people with disabilities as musicians. It shows that children like ours may have high level needs and dependency on 'the State' and their families, on the on the hand, but really have something valuable to contribute to society, on the other, through their music making (or other talent and area of interest).

We have come to know another band in Pamplona which includes people with Downs Syndrome called Motxila 21. We went to Spain at the end of May and performed with them in different places in Northern Spain while educating people about the music skills of people with disabilities.

Next week Motxila 21 are coming to London and we will run a similar project here. We would love to let people know about this as they could be inspired to see the musical talent of people with disabilities. They are 'musicians with disabilities' not 'disabled musicians' ie they want to be seen as musicians first, ie valued for their wonderful music and secondly as people who are succeeding despite their disabilities (though they are accepting and proud of who they are).

There will be a big gig in the Timber Lodge in the Queen Elizabeth Olympic Park and we would love to share this with people who could come and be inspired about the talent of musicians with disabilities. This fits in well with your great new campaign 'This Is Your Child'. Would there be a way to tell people about our project and see if they would like to come along?

I have never posted something on Mumsnet before but I was moved by your campaign to tell you about our special band and hope that people will come along and hear the bands perform on Saturday 31st August at 7pm. Let me know whether there is a better place to let people know about this and whether our band could ever support your campaign by performing at an event you may put together?

Thanks

loulouberlin Tue 20-Aug-13 13:27:48

My son has a rare and severe skin condition called ichthyosis. He is extremely bright and very happy. People stare constantly, say stupid things and are shocked/scared. We brace ourselves for every minute outside the house as we know an unpleasant reaction will happen. He is only two so still not fully understanding everything, but soon this will change and I hope we can keep our little boy so happy. We have prepared cards to hand people as we don't believe he should have to explain/apologise himself to everybody and quite frankly we don't have the time or energy to do this.

This is the message on our cards:

"My son has a rare skin condition called ichthyosis. It is genetic from both
his parents and he was born with it. He is not in pain, he does not itch, it is not contagious. He lives a very happy life and is very intelligent. He
understands how you look at him and the things you say - especially impolite and stupid things that are not nice for him to deal with.
Please think about your behaviour and treat my child as you would any other".

Thank you for organising the campaign.

SallyBear Tue 20-Aug-13 04:50:45

When total strangers say to you (sometimes in front of her) 'What's wrong with her?' That is intrusive, clumsy and rude. She does not actively want to draw attention to her looks. She was born that way. So when I reply 'Nothing is wrong with her' that is because she is the most courageous person I know and I couldn't be more proud of being her mother.

farlowz Mon 19-Aug-13 15:35:01

I agree with all the myths mentioned here. The one I would add is more a habit than a myth but where people automatically say "I'm sorry!" When being told about your child's disability. I'm not sorry, she is amazing and miraculous and I could not be prouder to be her mother and wouldn't change her for the world. I know it can be hard for people to know what to say, but I'd rather they didn't feel the need to apologise for my DD, I certainly don't!

hoxtonbabe Mon 19-Aug-13 07:19:13

Same as the others really, schools and so called professionals and their gems of:

"He looks ok"

" can't be anything wrong as he is not disruptive"

" he has ok ( not good by the way) grades so no SN

" he is not disabled because he is sitting GCSEs"

Schools and LA need to understand that by blocking or not providing the support they should have been putting in at complusrory school age, they are putting obstacles in the path of that child when they enter into adulthood and putting then at a disadvantage....all the things you are supposed to be preventing!

sophj100 Sun 18-Aug-13 09:13:56

Ignorance is bliss..... The old favourite of 'he doesn't look autistic' - aaaaargh! This is like saying - you've got it wrong or you're over-reacting. There is no one 'look'. It is invisible and being a mother of 2 very handsome boys, who are bright, funny, lively, loving and want to socialise, it makes it hard when they may not be 'sociable' in the way which is expected of them.

Also those who say you shouldn't Label your children. We all have labels - Tall, Short, Thin, Fat, Bald, Ugly, Beautiful...... etc. The label I give my children is comparative with the washing instructions on clothes. It gives clear information on how best to look after them, to maintain their beauty. The label reads 'Handle with Care'. As my children's OT says, 'Normal' is just a cycle on the washing machine, which made me think how this word should be struck from reference to anybody.

There is no 'normal'. No child follows the same path and all children have 'Special Needs' - particular likes / dislikes, ways of doing things, it's what keeps them all unique in their varying idiosyncrasies.

I want to see Autism spin on its axis and be seen in a more positive light. Those with this label may be different in the world they inhabit but it's a more focussed difference, which is why they struggle in following the conditions expected in the schooling / social system. That focus can be, in some cases, very beneficial as they do not get distracted by many of the negative attributes in society. They can work on one particular task, maybe not one chosen by others, but one they enjoy and one which gives them pleasure and helps them learn in the process.

I have been watching a group of mums in Australia, who started 'The Army of Autism Angels'. They are a very proactive group, who may use their looks (blonde, leggy and beautiful), to do large group activities i.e. a massive car wash session, all bikini-clad and using their sexuality to draw customers but with a very clear and real message showing their support and advertising autism as their cause. Not one I would necessary follow but the publicity for the 'condition' is great as it keeps it open and interest is great.

Let's give it a voice and a clear one, which doesn't ask for sympathy or even understanding, as it's a lot to ask unless you've been there but which asks for more knowledge, acceptance and even awe in the abilities some children with ASD have.

With Albert Einstein, Amadeus Mozart, Sir Isaac Newton, Charles Darwin, Thomas Jefferson, Michelangelo, Hans Christian Anderson, Andy Warholl, Emily Dickinson and (allegedly) Bill Gates all being somewhere on the spectrum - this must be a list one should be proud to join.

Em

Your ds struggles with certain things in life that a typically developing child does not. This means he will need MORE practise at the difficult things, and that means going out into the world to do that.

And, it isn't just him. YOU also need to practise going out with him. I PROMISE, practise makes perfect. Sometimes it will be hard, but the more you do it and the better you get at not only managing your children, giving them opportunities to learn acceptable behaviours in the community, but how you yourself deal with members of the public and how to prepare and stem off the bigger issues.

Please don't give up. It's hard and scary, but it does get easier.

SallyBear Sat 17-Aug-13 22:37:19

EmJDL. You have to make yourself go out. If you don't you are all missing out on the world around you. I felt better once I learned to face stares and the comments. It does hurt on occasion, but you develop a thick skin and it makes you stronger. Honestly it does. smile

EmJDL Sat 17-Aug-13 21:49:38

I've just read the article in the Guardian and was in tears because its all so close to home. My 3 yr old son has autism and at times I just dread leaving the house with his 1 year old brother too because of the looks and stares we so often get. I hate people judging him and us and often would just rather stay in the bubble of our own home.
Thank you for highlighting and addressing this awareness

Gaily1470 Sat 17-Aug-13 16:12:44

Fantastic campaign,will be behind it all the way.
I work in a school and have had the privilege to be part of an austistic girls early years education and family life.I have learnt so much from the her,good days and bad days.I have the utmost respect for parents/grandparents/siblings of children with special needs as each day they have new challenges to deal with not just their childs welfare and their own lives but from ignorant people who just do not realise what the families have to put up with.Both my boys have been lucky enough to be able to come into my school and play along side all the children in the school and they have a postive image of children with special needs.
Every child is different,every child is special and every child is beautiful,some may act differently and some may look different but that is the way of the world.So whatever I can do to support this campaign I will.

vickymslt Sat 17-Aug-13 15:02:32

Well done for such a brilliant campaign. I am a Speech and Language Therapist who has worked for 20 years in special schools and nurseries. I have 2 typically developing children of my own and always take them into special school with me when they have a day off school. I want them to grow up with positive attitiudes to children with additional needs. My daughter made a film about the children at my school and presented it in assembly at her mainstream school as she was sick of terms associated with disabilities being used as insults. She really got through to a lot of people.She then spent the day in a wheelchair at school adn teh weekend at home to see what it would be like from another persons perspective. Areal eye opener for all of us even though I ahve worked with children with physical difficulties for many years. She also won a public speaking competition talking on the same subject. I was a very proud mummy that day. Maybe she'll follow the same career path as me or maybe not but rest assured wherever she ends up I know she will always champion the cause. Maybe more children who are ignorant need to spend time with these beautiful people to change their attitiudes.....we can only hope.

Ang333 Sat 17-Aug-13 11:07:24

This truly sums Autism up. Definitely a saying to remember and quote to those who are less understanding.

RowanMumsnet (MNHQ) Fri 16-Aug-13 15:22:33

Hello hello

Do please come and have a look over here

grin

Thanks SO MUCH for everyone's input on this

zzzzz Fri 16-Aug-13 08:46:04

I can't help it

MOVE THAT BUS!

grin

sophj100 Thu 15-Aug-13 17:54:20

Am I too late to contribute to this?

zzzzz Tue 06-Aug-13 22:39:18

I'm going to start another thread about As and autism, you've got me thinking.

PolterGoose Argentina Tue 06-Aug-13 22:34:07

Peachy thanks for saying that about Aspergers, I'm sick of it being seen as 'mild autism' too.

zzzzz Tue 06-Aug-13 21:33:13

I would be totally fucked off if someone described me as a professional parent.

Someone once told very kindly that I was a "career Mummy". The implication being that I was on a par with women with real careers because I won't be returning to work. angry. I was furious, and (unusually) at a loss for words. She was trying to be kind but totally failed to realise that a "career" is woefully little compared to the scope of what I do.

<shuffles away still grumbling after 7 years>

noobieteacher Tue 06-Aug-13 18:14:09

Peachy I tell mine that if you want to look at people you must smile. That makes her aware of her impact on others. She's not ASD, just fascinated by other people with disabilities.

I think there is a danger that this campaign is going to sound defensive. I actually find most people just keep away, I welcome the interaction we do get, even if it's wrong. The last thing I want is for people to worry they might upset us or say the wrong thing.

The 'professional parent' isn't a bad label, just an indication that someone takes their role in their child's life seriously. I have had to take a step back from the groups and associations, but as soon as I'm not working outside the home I get sucked back in and end up on some committee or other.

zzzzz Tue 06-Aug-13 16:56:30

"This negative cultural attitude can be one of the most damaging problems within families. When a diagnosis happens, parents are vulnerable and look to their own parents for support - the message received is the doom and gloom reaction that their parents have absorbed following years of institutionalised segregation. It was tainted by fear - that diagnosis meant separation - it meant that one day your child would have to be taken away to another place."

I find this very true. Though for some of course the fear of separation comes without any dx at all. There are huge numbers of us with no dx at all and that is NOT because we are mild cases that can pass for average.

Peachy Tue 06-Aug-13 16:21:59

Sent.

But although SickOfSocalled is right about not being stared at, my son stares as part of his ASD and yes, probably at anyone who is themselves different from the norm. He can't help it and we try and drum it home but equally his often frequent autistic absences LOOK like he is starting. it's a minefield.

My most hated myth right now is that Asperger's is mild autism: that's not true, as long as it was diagnosed it had separate descriptors and there was a study looking purely at behavioural difficulties and finding parents reported similar levels of challenge across the diagnoses. Certainly my own child with autism is far simpler to care for then my one with Asperger's, especially with regards ton aggression and violence.

I don't think it's about extra help but it can be about getting what you should be entitled to: we have 4 children, 2 diagnosed as on the spectrum and the other has a collection of diagnoses (hypermobility, SLD etc) and is awaiting that 'big' ASD one eventually. They have found a genetic error but we are ahead of the science it seems. We get zero respite or breaks, last time we got away without the children for more than 2 hours was 2003, and that 2 hours is once a year when my Mum has them for our anniversary (a sixty mile drive away).

Actually the other horror I increasingly encounter is that of the 'professionally disabled family'. I get this a lot as I am studying ASD at MA level, people seem to think I am setting us up nicely for a life of dependency. This isn't true; before I met my husband I worked with disabled kids, after I had the boys I worked with struggling families some of whom had disabled kids- so whilst yes my decision to study was part based on my family (and my own suspected AS) it was far from the whole story, and would have been a natural choice.

noobieteacher Tue 06-Aug-13 11:41:19

'This is my child' - she may be a child now but very soon she will an adult, living in your street or village, working and living an independent life. She will have children and grandchildren and that is her right. Help her to do this to her best ability by encouraging her independence and inclusion NOW.

I have several really wonderful people in my life who have included my daughter into their family lives. It would be very easy for them to find other children for playdates, most people do. I would never want those people to think that I don't appreciate that. The difference it has made to my child has been immeasurable and far more effective than any therapies she has received from the services. A big thank you to those people.

noobieteacher Tue 06-Aug-13 11:23:22

There is a huge issue about generational difference of attitude. Until the 1940s, disabled people were literally rounded up in the streets and taken away to institutions or 'colonies'. Then until the 1980s they were kept in separate institutions completely segregated and isolated from peers. Now today, the trend is pushing again towards segregated schools. This culture had even pervaded my own attitude when my own daughter was diagnosed with disabilities.

This negative cultural attitude can be one of the most damaging problems within families. When a diagnosis happens, parents are vulnerable and look to their own parents for support - the message received is the doom and gloom reaction that their parents have absorbed following years of institutionalised segregation. It was tainted by fear - that diagnosis meant separation - it meant that one day your child would have to be taken away to another place.

The impact that this has is immeasurable and permeates the medical profession, adding to their belief that disability should be 'fixed' and that a disabled child is like a faulty product that should be taken back to the shop.

The media have warmed to disabled people, and the general public has also lost a lot of thier prejudice. Even the institutions have made an effort but this can all be put at risk if the prevailing politics of the day decides that it is more cost-effective to put people back in institutions and not support and enable them to live in the same institutions that everyone else does.

So two points really - educate the older generation (and men, who are often decades behind women when it comes to being liberal) and make sure that politicians don't try and sweep disabled people under the carpet.

Not sure where any of this fits in with your campaign - feel free to translate it into the MYTH format.

noobieteacher Tue 06-Aug-13 11:01:53

Ann-Marie Moore - are you being specific about only physical impairments - if so would that include the Deaf? Usually there is a combination. Ah I see you are from the School of Mechanical Engineering!

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