This Is My Child - the new MNHQ campaign. Everyone come look please!(305 Posts)
MNHQ have commented on this thread.
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.
Sirzy with mine being older there are less of the tantrums because he is able to verbalise how he is feeling. I will never forget sitting with him on the verge of calling an ambulance with him saying 'Goodbye Mummy, I know I am going to die soon' [cry]
He doesn't tend to get angry during an asthma attack, presumably because of the age difference - he's ten next year.
Aww poor thing. It is horrible watching them suffer. I keep onto the hope it will clear as he gets older but the doctors aren't optimistic now as he has some damage to one of his lungs
It's not unheard of I suppose. I live in hope that mine will grow out of it. What concerns me is that mine is on all this medication but all on the say so of the GP/asthma nurse but has never been referred to a consultant or hospital clinic. I must investigate that.
DS has been under the hospital since he was 6 months old and they are fantastic. We have had issues with the GP just getting repeat prescriptions (they question everything because the consultant has had to put him on very high doses of everything/drugs which aren't licensed for an under 4) and they don't like to even give him pred meaning we end up in A and E instead so I am glad we have good care from the hospital!
We get everything from the GP, they have been brilliant but part of me wonders if we should be at the hospital - he's never been there for it. The GP have put him on pred, on blue/brown/orange/purple inhalers at varying times and singulair when needed without any referrals. I suppose I should be glad that they are so good at dealing with it, even when he was bad they sorted him out there because they have oxygen on site and have said if they are open to take him there instead of A&E because it is quicker. It just seems a bit odd not to have been referred if you see what I mean.
Thank you so much for this MNHQ- I have just read the Guardian piece and am rather annoyed to see some willfully ignorant comments underneath. Some people just don't want to understand.
And, sadly I must say that some of the worst attitudes that I have come up against come from other parents of children with SN who assume that no allowances should be made for my dd if she does anything different from their child with SN. I never assume to understand any other child's disability other than my dd's - she has severe autism.
'Even with the campaign (and this thread) there is a sense of some disabilities count and some (asthma, diabetes) don't. It really shouldn't be like this.'
Yes, I totally agree. On another thread I read yesterday, someone attacked the mum of a child who wanted to apply for higher rate mobility for her child who has autism and was told 'Just be grateful your child can physically walk' and worse insulting comments. I tried to address it but got the distinct feeling my efforts were unsuccessful. And this was on the Special Needs board. If the current government are responsible for this kind of thing then the sooner they are out the better.
i was on that thread about DLA and HRM, there were quite a few of us singing from the same hymn sheet as you
I know Ripping, but even one person saying it is unacceptable.
Well done done mn for a much-needed campaign. There are some lucky children out there with you lionesses for mums. But I know it's not easy. My gran had a very tough life and worried about my mum's sister every day of her life.
The photos are gorgeous. Thank you for posting them. You can see the grit and character shining out of their little faces - or in her whole demeanour in the case of the little girl hiding under her hat. Loved the captions, too.
I just wanted to say to alwayswaving (much earlier on in the thread) that you sound amazing and your daughter is very very lucky to have you as a mother. You did the only thing you could do to keep you both on the planet. Well done; I have so much respect for you.
I never assume to understand any other child's disability other than my dd's
I think this is so important to remember, and its back to everyone being an individual. 2 people may have the same diagnosis but that doesn't mean it will effect them in the same way. Especially with something like Autism which covers such a wide spectrum.
One thing which really annoys me is parents of asthmatics saying "well my child can do that/that doesn't trigger him" well good for you but your child isn't mine!
Have been following closely - thought I ought to post in support, rather than just reading and nodding! What a validating campaign - well done us
Been said already but well done for raising awareness!
This is great. I like the tone; I like the name. The section on how to help as a 'lay person' is good too. Well done... I think this fills a gap.
Great campaign but sadly it's not just the judginess of the general public that causes upset to the families of disabled children.
Apparently, according to school, I should apologise for my disabled son's actions upsetting the staff. This is apparently regarded as a 'very inclusive' school too! . If the schools that are teaching our children can think and act like this what hope is there?
slippersock - that is terrible. I cannot believe they expected that Inclusive, my arse!
Slipper that sounds really awful. Do you mind me asking what he was expected to apologise for?
Schools can vary and imho some can talk the talk but be utterly crap. I have visited several secondary schools as my DS is about to enter Y6 and I need to choose a school for 2014. From my experience it appears that he role of the secondary SENCO with regard to prospective parents is to dissuade them from applying to their school. I have not been impressed.
My DS's crime apart from being autistic is to have mild learning difficulties...he wont be adding to their league table results and therefore they don't want him. I have no choice but to send him as socially he is ahead of children in the special schools I have visited. I do wonder about home education but because of DS's autism I feel he needs a school environment.
That's my experience too Jake. When moving and visiting many local primary, they fall over themselves to assure me that his needs won't be met there.
What they see when they see us is them being forced to spend their un-ringfenced SEN money on ONE child, instead of on a vegetable garden for ALL children and an attraction for affluent MC parents.
Sorry, should have said local PRIMARIES!!
Trouble is, they ALL do it. So you are left without a school or at least without a school it would be impossible to work in partnership with as the terms of the relationship are defined at the show-around when they make it clear that they don't want you then, and whilst you are there will continue to find ways of encouraging you to leave.
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