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

304 replies

RowanMumsnet · 16/08/2013 15:16

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 Wink).

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

OP posts:
Pawprint · 20/08/2013 20:31

Twisty that is utterly... Well, I've been struggling to find words but I can't find any Sad

SunnyIntervals · 20/08/2013 20:36

This reply has been deleted

Message withdrawn at poster's request.

sickofsocalledexperts · 20/08/2013 20:37

I think any parent who invites all or nearly all of a class to their child's party, and excludes the SN kid, is a terrible person, setting a terrible example to their own kids. No manners, no kindness in their soul, no class.

Holliewantstobehot · 20/08/2013 22:00

What a fantastic campaign. Have had a tough week with my dyspraxic ds and if just one person who looked at me and thought i was a crap parent sees this campaign and thinks oh maybe that was why ...... Then it has worked.
And the parent who on hearing my ds was being bullied said oh that's sad he can't help being slow - he's not slow!!!!
And the well meaning people who tell me i need to sort his behaviour out before he is a teenager or i'll regret it and have i tried smacking him.
And the people who imply that there's not really much wrong with him and i'm exagerating it and that it would be better for him if i told him he didn't have any disability as he would then try harder!

CatherineLee · 20/08/2013 22:03

I am a parent to a little boy who will be 3 soon. When hewas 14 days old he was diagnosed with Cystic Fibrosis. This was a huge shock for our family as we had no history of CF in the family. Although our little boy looks like any other child and has no behavioural or physical disabilities, what nobody realises is the amount of medication our son has to take every single day in order to keep fit and healthy. Our journey in this world has been a huge learning curve. My biggest frustration is when I have to tell other people what my son has... they often don't listen properly and this sometimes results in my son unable to take part in some activities or groups. My limited advice? Every child should have a go at everything. To enable that to happen you just have to think outside the box.

SunnyIntervals · 20/08/2013 23:45

This reply has been deleted

Message withdrawn at poster's request.

ZingWantsCake · 21/08/2013 06:11

sorry for my very ignorant question but the one thing I struggle with is do parents who have speecial needs and the children themselves prefer them to be treated as normal as possible (not in an ignoring the problems but more in a "despite the problems" way) or prefer people to be sensitive to their additional needs?

or a mixture of both?

the reason I'm asking is because a friend's DD has Down Syndrom (let's and call her Katie) whenever we bump into each other in the swimming pool Katie wants a cuddle then starts pulling my hair. both of these are signs affection and I don't mind the hair pulling (does hurt though) as I'm happy to please her.
but her mum tells her to stop and I always say it's ok.
of course if she was any other child I would discourage the behaviour, but as for her its a way of showing a positive emotion I don't want her to feel rejected.

should I then stop her from hair pulling as her mum wants her to stop or not?
I'm confused about things like that.

again I'm sorry if it's not the right place or way of asking this.

RatherBeOnThePiste · 21/08/2013 06:14

Only just catching up, really good article in the Guardian, fantastic and much needed campaign. Really good stuff, thank you to all involved.

fanjoforthemammaries7850 · 21/08/2013 07:02

I would stop her from hair pulling, as it may be sort of acceptable and cute when she is a cute kid but won't be when she gets older and stronger

fanjoforthemammaries7850 · 21/08/2013 07:03

To me the sensitive thing is being understanding about why she does it and not thinking she is being naughty, not allowing her to do it.

Tidypidy · 21/08/2013 07:41

My oldest son has Type 1 diabetes which is classed as a disability. If his blood sugar is too low he can become very clingy, grumpy and sometimes aggressive. There have been occasions when we've been out that this has happened and we have drawn many disapproving looks and tuts from other people. Like other posters, it's been suggested that I give him a smack to sort him out. Sometimes I point out that he's diabetic but even then the comments don't stop, especially if I need to give him glucose tablets to raise his blood sugar as I'm "rewarding his bad behaviour with sweets!"
The ignorance around Type 1 diabetes can also be frustrating, many confuse Types 1 and 2, others assume he will "grow out of it" or that I ate something during pregnancy to cause it.
As previous posters have said, I'm sure my son receives fewer invites to parties because parents are concerned about the diabetes. Certainly we've had many comments that he'll never be allowed to eat sweets and cake. I do try to say that we all need a healthy diet and sweets and cake are allowed in moderation but often it's ignored.
Type 1 diabetes is a serious lifelong condition which is mostly invisible but can affect a child's behaviour and learning potential if blood sugars are poorly managed.

Please MNHQ can you include Type 1 diabetes in this brilliant campaign?

YourHandInMyHand · 21/08/2013 08:14

ZingWantsCake - I have similar issues with my DS who has autism, he will get very close into people's personal space being affectionate eg stroking their head/hair/practically sat on their knee even if he's only just met the person. I always tell him not to and get the adult doing the polite response of "it's okay, I don't mind". Whether they do or not they may well do when he's 6 foot tall and still doing it! Like fanjo says the problem is these children will continue these behaviours into adulthood.

Perhaps you could talk to your friend about it and come up with a new way you could greet her DD? Mine has been enjoying high fives from a football coach this week and it's so nice to see a bit of socially appropriate interaction going on! Grin It's really thoughtful of you to ask, I hope you and the mum can come up with something you are all happy with (including her excited to see you DD).

cantsleep · 21/08/2013 08:36

my dcs all have various health problems/disabilities. The very obvious physical ones in a way are easier to deal with when out as people tend to be very kind and sympathetic but the 'invisible' problems such as dd2 diabetes do tend to attract the wrong attention, just as tidypidy has described with her ds when hypo my dd will get very upset, cry/scream/shake and people assume it is a tantrum and tut at me feeding her jelly babies/lucozade tablets and/or juice.

We have had comments like "did you give her too much sugar and thats what caused it?/is she just a little bit diabetic/she might grow out of it" and it is heartbreaking. All my dcs have mobility and pain issues but the type 1 diabetes is what causes us the most heartache as a family because so many people do not understand it.

sparklingstars · 21/08/2013 08:41

I have the same experience with my DC having asthma, one of them does a lot of of sport and takes an inhaler with them all the time. I've had comments like 'surely he can leave it in the changing room? Being a bit out of breath won't hurt', they just don't get it :(

Also, the need for people with asthma to pay for prescriptions, why? I know that diabetes is a condition that gives you exemption from prescription charges and I think it's appropriate that it is but it needs to be addressed for other conditions such as asthma and no doubt others as well.

Sirzy · 21/08/2013 08:48

Sparkling, I agree. DS is only 3 but has quite bad asthma which is impossible to control at the moment and the ignorance of people towards it really astounds me and scares me as he gets older. people don't seem to realise that asthma is often more than being "a bit out of breath". I also worry about the amount of time he will be missing from school as he gets older and the impact that has.

That said, its nothing compared to the daily battle so many have to go through with their children.

ViviPru · 21/08/2013 10:13

I am completely smitten with the child with the owl toy in the gallery.

DH has ADHD - there is a genetic link through his father's line. We are yet to have DCs and sometimes I feel daunted about the prospect of becoming a parent to a child who could potentially (and quite likely) inherit the condition. But then I check myself and remember all the reasons DH is great BECAUSE of his ADHD and this campaign is helping to reinforce that for me.

sparklingstars · 21/08/2013 10:51

Sirzy, agreed completely re it being nothing compared to what some people go through.
I hope that your DS is much better soon. Do you have a supportive medical team for him?

Sirzy · 21/08/2013 11:01

Yes his consultant is fantastic as is the whole local peads department. Last time he had a major attack they arranged for nurses to come and see us at home which made it easier than having to be admitted again. The main problem at the moment is getting his medicine right as he is on the highest doses for children of all his meds but is only 3. Things are certainly better than they were though!

PrinceRogersNelson · 21/08/2013 13:40

Is there a list of disabilities somewhere that this campaign is covering? I have seen a couple of posters mention it but cannot find it anywhere.

Thanks

SilverApples · 21/08/2013 13:51

A list?
Whom do you suggest gets left out? Confused

Sirzy · 21/08/2013 13:55

It isn't really about specific disabilities it is about children who have additional needs and as such require extra support and understanding.

The good thing about this campaign is the way it seems to be focused on the individual and getting people to think about individuals and their needs rather than making assumptions based on a label.

hazeyjane · 21/08/2013 14:07

It would be a pretty long list!

It should also be remembered that a lot of people with disabilities spend years searching for a diagnosis, and many never actually get one.

PrinceRogersNelson · 21/08/2013 19:56

No, I don't mean it like that! I mean I have seen a couple of posters say "can you add X to the list please mumsnet?" And I didn't know what list they were talking about.

LaSpooney · 21/08/2013 20:05

Thank you, Mumsnet, for a great campaign.

Anything that educates and, hopefully, reduces or even, please God, eliminates the judgmental nonsense has to be a good thing. In my experience it is the friends, neighbours and parents at school with their typically developed children who run a mile from the autistic kid that pose the biggest challenge. "Solutions" to DS being completely non verbal at 6 and a half, "haven't you tried flash cards, Sing & Sign, Phonics" I admit, it's been building for a while and waiting to escape so I'll unleash the necessary: if your child is biologically and genetically predisposed to speak, I think you'll find that your kids will do what they're programmed to do ie speak. Mine isn't programmed that way. Feel so much better now.
The more we raise awareness and promote understanding the better our children's futures will be.

Lisawordbird · 21/08/2013 20:57

A great campaign! Thank you for including 'hidden' disabilities. DD has Asperger's, but we don't necessarily tell people about it, as it can give them some odd preconceptions. She's nowhere near 'Rain Man', and she's far from remote and unaffectionate. She's garrulous, charming, artistic, cuddly and delightful, so I tend to let people assume she's just eccentric. Well, because she is. (She's mine, after all, and the apple doesn't fall far from the tree.)

Once you read the descriptions of things like dyslexia, Asperger's, ADHD, ADD, Dyspraxia etc etc. you can see how these things fit with people you know. Back when I was in school, we didn't have these diagnoses, we just had bad spellers, nerds, ants-in-your-pants, day dreamers and the cack-handed. Nowadays, it's the same behaviour, but the names are more positive and less insulting, plus they come with an understanding of how to help different children learn more effectively. I speak as a cack-handed daydreamer. :-)

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