This Is My Child - the new MNHQ campaign. Everyone come look please!

[RowanMumsnet]

Hello,

As lots of you will already know, we've spent the last few months working on a new campaign called 'This Is My Child' - and it's launching on Monday. (We're letting you know about it now because there's a rather nice piece about in in the Guardian this weekend.)

You can read about the background to the campaign here, but in essence it's about myth-busting and awareness-raising - so we'd really love you all to share it as widely as possible. We've consulted with Mumsnetters and the material is supported by input from some of the leading charities in the field: Mencap, Contact A Family and Every Disabled Child Matters.

Over the years on Mumsnet, parents of children with SN have described how their lives are made more difficult by the occasional (or not-so-occasional) judginess of members of the public. They've described how this can contribute to their isolation, placing limits on their social opportunities because they can't face the stress and disapproval that comes with public interactions.

That's why we came up with This Is My Child. Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act together to make day-to-day life a bit easier for these families.

The input of parents caring for children with special needs has always provided a fascinating perspective for other MNers, encouraging empathy and giving real insight into what life can be like. We're hoping that our myth-busters, tips for non-experts and strategies for parents and carers, along with our background facts and figures, will help to bring the wisdom and perspective of Mumsnet SN posters to a wider audience.

So if you like what you read and think someone you know would find it interesting or useful, please share it as widely as you can (you'll find our impressively large sharing buttons on each page ).

And for the Tweeps among you, we'll be holding a Twitter party on the #ThisIsMyChild hashtag on Tuesday between 1pm and 2pm; please join in if you can.

As ever, we'd love to know your thoughts and hear your feedback, so please use this thread to post up anything that occurs to you.

Thanks
MNHQ

[AcrylicPlexiglass]

I love the gallery. Agree with Lynette that all the children featured are strikingly gorgeous.

[jennifersofia]

Aren't they all lovely! Thank you for sharing the photos of your children, and your comments. I wish I could meet your children, and get to know them.

[EllenJanesthickerknickers]

My DSs photo isn't on there.

[EllenJanesthickerknickers]

Missing apostrophe, DSs' (more than one DS!)

[fanjoforthemammaries7850]

I was inspired by the campaign yesterday.

We go to a place every week that has a cafe and trampolines outside.

DD was excited to go to the trampolines but they were closed as it was threatening rain.

She was really really upset. We went into cafe and she was yelling.

DH took her to toilet and there was a huge queue. A woman returned to next table and proceeded to gleefully bitch to her DH "there was a girl in there and she's not even that small and she was screaming and her Daddy had to hold her up, isn't that terrible".

Then DD and DH returned and she said "there she is".

I said "excuse me, that's my daughter and she has autism". The woman apologised. I said that DD.comes every week to use the trampolines and was really upset they were closed (DD is 6 but emotionally is a toddler). I was pleasant and just said I hadn't wanted her to think DD was a brat. She then tried to say she had been talking about another child

I felt a bit mean actually.as the woman felt terrible. I suppose she didn't understand.

I think I just saw red..I wasnt actually feeling well but we were trying to stick to DD's routine, and it was too much to see.someone bitching about DD when she was just upset and non verbal.

So..I suppose that is a very local version of the larger campaign to educate.

[Pitstoppenny]

Good article in the Guardian. I think it is interesting that when we visit Cuba where my three kids Dad is from I notice special needs kids are given lots of attention from the community and high fives in the street. Here it is easy to feel like a leper but you just have to keep going out and try to never give up. One of the nicest things I have seen was an autistic boy running along the main boulvard in Havana being given high fives by all the locals who knew him. These people appreciate life can be harder than being in poverty. My autistic son has always had such a good time mainly because he has been included in everything and given a lot of positive attention. I think is it as lot to expect people not to stare but it is great to educate people on how parents feel when this happens. I am pleased finally this prejudice is being talked about head on. It is such a big issue and is just that prejudice and should be talked about and tackled more in our society. We have come a long way but there is further to go and the answer is support and inclusion for kids with different abilities!

[SallyBear]

Well done Fanjo. It's upsetting, but maybe just maybe you gave that woman some pause for thought.

We were on holiday the other week and decided to take a steam train ride. DS4 has ASD and couldn't understand what we were doing. Cried in the ticket office, on the platform and then howled in the carriage. A load of people got off the carriage to escape his crying except the grandparents to a small child. Once the train got going the howling started to subside and then was replaced by hiccupy sobs. Once we had stopped I apologised to them for his crying saying that he hadn't understood what we were doing and got into a bit of a state and they were lovely to him. Saying that their eldest grandchild has ASD and that he would get like that, and they understood completely and it hadn't spoiled their enjoyment on the train with their grandson. Some people do understand and some people don't.

A little bit of understanding goes a long way, because as those of us with children who will kick off in public we are busy trying to soothe and calm and really don't need others gawking or making judgements.

[hazeyjane]

Well don eFanjo.

I did think at 3 o'clock this morning as I was wrestling the manic, thrashing octopus that is ds, when he thinks it is time to get up, and I am trying to make sure everyone else in the house can stay asleep, that a statement like, 'This Is My Child : he screams, and hits himself when he is overwhelmed and frightened...he finds it very difficult to look at people when they lean in close to him....he drools and makes a mess when he eats because of his low muscle tone...he sits in a buggy because his muscles have to work harder, and he tires more easily.....etc' could be added on to the photos of our, admittedly, lovely children!

[hazeyjane]

Obviously that should be 'Well done, Fanjo' - an eFanjo, doesn't bear thinking about!

[drnismith]

Great campaign, I like the focus on reframing: focussing on what parents would prefer to hear. I so often hear patronising comments when out with my friend who has wheels.

[BoffinMum]

Suggestion:

Maybe emphasise that ADHD and so on have a genetic basis, but with good support it's possibly to reduce the impact of these disorders?

'Disorders of Attention and Activity' are given a good chapter in Rutter's Child and Adolescent Psychiatry explaining how this can work - probably not for the lay reader though .

[BoffinMum]

BTW there is a myth surrounding overdiagnosis. My personal theory is that all these disorders existed in the past, but now schools aren't allowed to beat children they find objectionable, kids are now sent off to psychologists for diagnosis.

[edam]

Good for you, Fanjo, maybe she'll think twice next time she's about to judge.

Read the Guardian article yesterday, thought it was great. So glad MN have got this campaign. I grew up around a few people with learning and physical disabilities (just so happens we had relatives and family friends with disabilities) and my sister's an LD nurse so I've seen some of the prejudice first hand and heard about it second-hand. I've never understood it, tbh. Why would your first response to a stranger be unkind?

What's really shocking to me is the cruel treatment of people with learning disabilities by people working in health or social care, who you would expect would know a LOT better. Members of the public can be fuckwits but doctors, nurses and social workers?!

Am a hack and have reported on Mind's (horrifying) Death by Indifference reports. And my sister's got loads of bad stories. Patients sent back from A&E (she couldn't go with them as the only registered nurse in charge at her unit - whole other story about short-staffing) because A&E didn't want them or couldn't cope with them. WTF?

So I hope this campaign doesn't just educate the public, but educates stupid people who work in health and social care, and education and everywhere else where you'd think they know better.

[edam]

Missed your post about over-diagnosis, Boffin. I'm sure you are right about people not being diagnosed in the past, but also I think a lot of people with disabilities died young. Bad healthcare, lack of stuff that is now available, and then adults with disabilities were often shunted off into homes and not seen in the outside world.

[SPBisResisting]

Plus any disorders related to prematurity will be on the rise as more premature babies survive - I don' know if/what they are but assume there are some

[SallyBear]

Both points are very true. In essence disabilities shouldn't be hidden from the public. We are all part of this rich tapestry called life. When I sit down and think about what my children have, honestly speaking its not for the faint hearted. Did anyone get a choice? No they didn't. So you just deal with it the best way you know how, and all any of us ask for is a bit of kindness and consideration.

[edam]

True, and for instance, people with Down's who have associated heart conditions are far more likely to get healthcare now, when in previous decades they would have been 'allowed' to die in infancy (refused treatment). Life expectancy for people with Down's is increasing, and sadly it is now apparent there's a higher rate of early-onset dementia - in previous generations people with Down's would have died far younger so never reached the age at which dementia emerges.

[SPBisResisting]

Yes, that's really interesting (and sad obviously). It's an emerging healthcare requirement I assume as people with DS are living longer than they previously would. Not sure what the numbers are exactly but I really hope it is being considered as a separate issue

[BoffinMum]

I imagine there was a tendency to only see the disorder and not think it was worth attending to the person as an individual with the same range of health needs as any other member of the population, eg vaccinations, routine tests, dental care, treatment for associated conditions. A bit like the experiences of some patients with mental health conditions today, as people have pointed out.

[edam]

YY, and sadly it still happens to some extent - my sister is a nurse who specialises in the physical health of people with learning disabilities and works in a mental health trust. Docs and nurses still have a tendency to neglect or just not see the physical health needs of someone with LDs, or mental illness, even when that person is clearly exhibiting symptoms of e.g. diabetes, according to my sister.

[SPBisResisting]

How dreadful. I think they're slowly getting there with children with social needs - eg looked after children, hopefully that will seep into health care.

[MissBetseyTrotwood]

Well done Fanjo . That vinegar chops is a bit less ignorant now. Hope you're feeling better today.