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

(303 Posts)

MNHQ have commented on this thread.

RowanMumsnet (MNHQ) Fri 16-Aug-13 15:16:01

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

mignonette Fri 16-Aug-13 15:23:01

Have looked at the photo's of the children. They are all beautiful. My niece was born a couple of months ago in Germany with as yet unknown consequences of the severe oxygen starvation she endured during her birth due to clinical negligence. She is now at home and doing very well but we know that she is partially deaf, will have problems with walking and muscle tone but the rest is unknown. She is an open book but we have hope because she survived.

She is beautiful. Strong, resilient and so full of life and personality.

She is my niece and I love her.

AtYourCervix Fri 16-Aug-13 15:31:55

thanks

That Guardian piece is good.

RippingYarns Fri 16-Aug-13 15:40:30

thank you

<wipes tears>

Message withdrawn at poster's request.

YoniMatopoeia Fri 16-Aug-13 15:49:42

Good stuff.

neriberi Fri 16-Aug-13 15:53:40

I've just read the Guardian piece, amazing.

My sister was disabled, she passed away in 2009. I remember going on holiday one year and someone laughing at her when she had a melt down in departures, she was totally oblivious to the looks she was getting but the rest of us weren't. Usually we just let the looks bounce but this one guy thought it was hilarious and sniggered to his mate then pointed in our direction...

I know this was a petty thing to do but I marched over there and asked him in a really loud voice so that people looked why he was laughing at a disabled person? He looked dumb struck then said sorry, he didn't realise.

This is such a fab campaign Mumsnet thanks

ProtegeMoi Fri 16-Aug-13 16:10:36

Great campaign!

The awful comment on the guardian piece shows why we need something like this.

GobbySadcase Fri 16-Aug-13 16:20:12

Great.

Now I hope the sentiment is enforced on here.

mignonette Fri 16-Aug-13 16:24:16

NeriBeri Your sister would have been proud of you I'm sure. Good for you.

insanityscratching Fri 16-Aug-13 16:32:59

So glad to see this is "live" and have shared. The experiences of the mums in the Guardian article are just my experiences when out and about with ds and dd who have autism.
Ds is 18 now and only once in all those years has a stranger ever offered to help but the times he has been stared at, called a shit, told he needed a good hiding or I have been berated or criticised for my supposed dreadful parenting are too numerous to count. I was even abused in a disabled parking bay by a pensioner who had the adjacent disabled space who decided in his wisdom ds wasn't worthy of the blue badge angry
Raising awareness of what life is really like for parents of children with disabilities can't come soon enough IMO.
flowers Mumsnet

Great campaign.

HelenaLindor Fri 16-Aug-13 16:58:59

That article made me gasp in horror 'at least its not cancer'. Who would say such a thing?

I am glad that you are running this campaign, MNHQ and hope that it makes some people think before they open their mouths, or roll their eyes.

cocolepew Fri 16-Aug-13 17:20:13

Great Guardian piece.

Great article and those pictures are brilliant.

My friend has a son with autism and I know how hard she finds it when people who know make assumptions, and people that don't know make assumptions. Plus the worry about what his future holds.

BrainSurgeon Fri 16-Aug-13 18:11:26

Great piece. Have shared. thanks

Summerhasloaded Fri 16-Aug-13 18:14:55

Thank you, am sharing away smile

kinkyfuckery Fri 16-Aug-13 18:15:31

Fantastic article, shame about some of the comment though sad

birdbrain21 Fri 16-Aug-13 18:19:39

As a 1:1 special needs teacher in a mainstream primary school I have many times found myself trying to explain to colleagues how special the children I teach are and how much they should try to include them. Some teachers work really hard to have jobs in the classroom these children can do, or special projects they will be able to take part in and it's amazing to see how much children with sn want to be like their friends. It's a very rewarding job and I love all my charges nearly as much as my own baby!
I'm so happy to see this campaign started and I really hope it helps inform the world how amazing and special these precious children and their famlilies are. If only people could really meet children with sn and see how their fantastic families cope I think the world would be a much more understanding place. There are so many ingorant people out there and I hope this changes things.
Thank you mumsnet.

I'm so glad to see this getting off the ground - I've been sharing it on Facebook and Twitter all afternoon. smile It's a great campaign and I hope it really makes a difference.

Doobydoo Fri 16-Aug-13 18:41:52

hOW DO i SHARE IT ON MY FACE BOOK PAGE?

Doobydoo Fri 16-Aug-13 18:43:41

Done it!

GobbySadcase Fri 16-Aug-13 18:56:25

Sadly the comments don't surprise me. Some of the comments following Polly Toynbee's article on my family were vile.

Rumours Fri 16-Aug-13 19:01:00

Thank you MNHQ thanks

MuseumOfHam Fri 16-Aug-13 19:09:52

A huge cheer for this campaign! Hip hip hooray!

Gunznroses Fri 16-Aug-13 19:12:14

This is so good smile we have to begin educating people somewhere, where better than here ? smile

RubyrooUK Fri 16-Aug-13 19:28:05

Great campaign and article. Thank you for highlighting it.

LouDou Fri 16-Aug-13 19:31:13

My heart took a leap when I saw about the campaign. The last eight years have been a combination of highs, but also lows: heartache, disappointment and loneliness. I am so, so grateful for this and for bringing to wider attention the issues that so many of us face, day in, day out. Wildflower's comment on the Guardian site could have been written by me. Am having a couple of tears now.

MairzyDoats Fri 16-Aug-13 19:55:45

Awesome campaign, well done Mumsnet HQ!

PolterGoose Fri 16-Aug-13 20:23:53

Thank you MNHQ flowers

JacqueslePeacock Fri 16-Aug-13 20:32:37

This is great. Well done everyone who contributed.

lougle Fri 16-Aug-13 20:57:26

Ooh thanks, MNHQ. You've used one of my favourite photos of DD1 grin I've shared on FB.

SunnyIntervals Fri 16-Aug-13 21:40:41

Lovely photos smile

Kiriwawa Fri 16-Aug-13 21:55:08

Thanks MN - I'm really grateful for this campaign.

I might buy a job lot of papers tomorrow when we're at the airport and DS is doing something that is clearly 'weird' and hand the article out to the tutters and starers

Just logged in, back from holidays today...fab, fab work MNHQ and so proud of my son in the gallery. The photos really make the point about individuals so clearly, lovely pictures.
Think I may have missed a call from the Guardian, but no matter, it's a great article...thanks Mumsnetters...such a great force to be reckoned with!
Am busily sharing to spread the word..

Thanks so much flowers

Wonderful campaign and beautiful photographs.
I adore the dragon and the jewellery designer smile

Please don't let this fizzle out after a few months

This is great thanks

timidviper Sat 17-Aug-13 00:43:53

Well done Mumsnet flowers.
I maintain that the biggest gift MN gives all of us is the broadening of our horizons; we get support, advice and laughs from people who are very different to us in real life and, with whom, we would not normally interact.
Many of us have had very little contact with children with special needs and we learn a lot here, I hope this campaign will spread this learning to others in society

SallyBear Sat 17-Aug-13 06:45:00

I emailed the BBC last night, about the article, and its their lead UK news story this morning.

BBC

MissBetseyTrotwood Sat 17-Aug-13 08:12:42

DS2 went to a summer holiday playscheme this week, at the end of which the children did a show the parents watched. By the attitudes towards his lovely performance from some of the parents there, I'd say this campaign is timely. sad

It's a great campaign. thanks

TheaCMcM Sat 17-Aug-13 08:41:30

I think the most important thing for people to realise is that we are just a family like any other, we may need extra help with things, but really Greta is just a nine year old little girl, just like their little boys and girls, with hopes and worries, and delights, just the same

SallyBear Sat 17-Aug-13 08:52:17

Absolutely agree with you Thea.

amberlight Sat 17-Aug-13 08:52:38

Huge thanks, Mumsnet.

2littledinos Sat 17-Aug-13 08:56:33

Really pleased to see this campaign.
As a family we've had the open mouthed long stares at my son who had oxygen via nasal cannula for 2 yrs, and a nasogastric tube for feeding. We've had the parents dragging their children away from him, shushing them from asking me questions.
Now he's a bit older, in a SN push chair for support, we still get them, and it still hurts sad

SilveryMoon Sat 17-Aug-13 09:04:46

Shared the link on fb. Great campaign.

NeoMaxiZoomDweebie Sat 17-Aug-13 10:07:31

Just been to look at the gallery...such beautiful DC there. I love this campaign. I have only bee slightly touched by a child with sn in my life but it was enough to open up my mind as to the struggles that many parents have regarding other people's ignorance. This campaign is so positive and yet it will educate people massively. Its great. xx

NeoMaxiZoomDweebie Sat 17-Aug-13 10:13:32

MissBetsy those people will always be rude and unhappy...you and your child won't be...I'm sorry they never appreciated his performance...they're the losers. brew x

r3dh3d Sat 17-Aug-13 10:27:27

Is it too late for photos?

LillethTheCat Sat 17-Aug-13 11:40:43

Thanks for this campaign. My sister had downs (unfortunately she passed away in 2002) and my DS is autistic. Definitely sharing this one thanks

minkembernard Sat 17-Aug-13 12:00:02

Thankyou for this. thanks
As someone who has very little knowledge of SN this has been really helpful and an eye opener. It is always good to learn more about something of which I am embarrassingly ignorant blush

I do not stand and stare. And I don't judge at the checkouts- my own dcs are quite likely to be the ones making a scene so I never tut at other parents. But I will make more effort to offer help if it looks like it is needed.

ArthurPewty Sat 17-Aug-13 12:06:11

Message withdrawn at poster's request.

magimedi Sat 17-Aug-13 12:45:45

Really lovely - I will share it with al lI can.

Vasilisa96 Sat 17-Aug-13 12:48:58

It's a wonderful feeling to see this campaign take off!! Extremely powerful and a shot-in-the-arm for all Parent Carers of children and young people with SEND. Look for NNPCF online; it's active in every town and city. Join yours, it is a brilliant initiative to support parent Carers of children with special needs and disabilities. Thank you, Mumsnet!

Vasilisa96 Sat 17-Aug-13 12:53:44
sparklingstars Sat 17-Aug-13 13:04:21

This is excellent. May I suggest adding asthma to your list of conditions that this is covering as it has a massive impact on the education and social lives of many children and also impacts on parenting in many ways, most of which are not obvious to the 'person in the street' as they just see it as needing an inhaler occasionally rather than a life long dependency on medications and impacting on many things in their life, their siblings and parents.

Thank you MN. flowers

Velve Sat 17-Aug-13 13:39:08

Wonderful campaign.
Great article in the Guardian. thanks

CabbageLooking Sat 17-Aug-13 14:20:04

Lovely campaign but for some reason I can't flick through the photos - is it just me?

charitygirl Sat 17-Aug-13 15:17:34

Great - well done MNHQ, and all the parents, and children, who've contributed.

Lastofthepodpeople Sat 17-Aug-13 15:54:41

I think it's very easy for someone to see something as 'bad behaviour' when they don't know any better.

This is a great campaign. I've certainly had my eyes opened by posters on Mumsnet.

Snatchoo Sat 17-Aug-13 16:33:12

This is great and I have shared.

My boys have speech delay, and I sometimes get looks and questions like it's something I've done to make them not talk. I can't imagine what it must be like for children and parents where they have more severe difficulties and disabilities.

onetiredmummy Sat 17-Aug-13 16:37:43

Shared on Facebook , although the accompanying picture is of women dancing or exercising ? Strange choice, is there a reason behind it?

badgerhead Sat 17-Aug-13 18:29:37

This is a brilliant campaign, as a childminder who looks after a boy with Aspergers Syndrome and others in the past with hidden conditions, I am positive about the need to make people's awareness of how judgemental they can be, as it is so important.

RowanMumsnet (MNHQ) Sat 17-Aug-13 19:02:47

Hello

Thanks so much for the comments and suggestions - we will have a good look through.

And thanks also to everyone who's been helping to spread the word.

onetiredmummy - hmm, not sure about that. Did you share by hitting the 'share' button on this thread, or on a particular page? Can you tell us how you did it and then we'll try to work out what's going on with the image.

CabbageLooking - do you mean on this page? It's working for me. Are you on desktop or mobile? Anyone else having problems?

SPBisResisting Sat 17-Aug-13 20:33:29

Wonderful. Will be sharing

loseweighthl Sat 17-Aug-13 20:48:00

Like, Shared & Tweeted - fantastic article :-)x

LynetteScavo Sat 17-Aug-13 20:51:43

I think this is one of the best things MNHQ has ever done.

And looking at the gallery, I must say, MNetters seem to produce extremely gorgeous children!

But it's the captions that go with the photo's that struck me Simple sentences which somehow show so clearly the love, respect and awe each parent has for their child. Beautiful and moving. smile

onetiredmummy Sat 17-Aug-13 20:53:53

Hi mnhq, I used the share to Facebook button at the bottom of this thread smile

hazeyjane Sat 17-Aug-13 20:55:47

Great to see the campaign up and running, and a really good article too.

Dh saw it on the BBC website, clicked on the photos and ran into the kitchen saying,

'Hazey, there is a really blurry photo of ds being used in the MNSN campaign!!'

I hadn't noticed, because our iPad screen is so schmeary.

RowanMumsnet (MNHQ) Sat 17-Aug-13 20:59:25

onetiredmummy

Hi mnhq, I used the share to Facebook button at the bottom of this thread smile

Hmm you're right - it's a default image I think!

Will see if we can get it changed to one of our lovely pics.

SallyBear Sat 17-Aug-13 21:01:26

Hazey gringrin

hazeyjane Sat 17-Aug-13 21:02:41

Don't worry, I have been busy with the baby wipes.

Great article too, although some of the comments afterwards are just exasperating, but really go to show why a campaign like this is so important.

TheNinjaGooseIsOnAMission Sat 17-Aug-13 21:06:02

fab campaign, have already shared smile

SallyBear Sat 17-Aug-13 21:14:03

Yes there was a comment that exasperated me quite a bit, as obviously the writer was clueless of how frustrating and just downright disrespectful it is to ask "what's wrong with her/him". angry

rightsaidthread Sat 17-Aug-13 21:22:38

So happy to see this up and running. Can we still add photos?

RowanMumsnet (MNHQ) Sat 17-Aug-13 21:23:57

rightsaidthread

So happy to see this up and running. Can we still add photos?

Do send 'em in to contactus@mumsnet.com, FAO Campaigns Team, and we'll try to get them in.

AcrylicPlexiglass Sat 17-Aug-13 21:34:18

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

jennifersofia Sat 17-Aug-13 22:48:51

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.

My DSs photo isn't on there. sad

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

FanjoForTheMammaries Sun 18-Aug-13 07:39:09

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 hmm

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 Sun 18-Aug-13 07:51:01

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 Sun 18-Aug-13 07:55:40

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.

HotheadPaisan Sun 18-Aug-13 08:39:09

Many thanks for this, was it a DoD at any point?

justaboutreadyforbed Sun 18-Aug-13 08:46:19

Hooray for Rowan and this campaign.

hazeyjane Sun 18-Aug-13 09:01:09

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!

<BTW, Oi MNHQ, where are the photo's of Ellen's ds??>

hazeyjane Sun 18-Aug-13 09:01:56

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

drnismith Sun 18-Aug-13 09:11:22

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 Sun 18-Aug-13 09:14:51

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 wink.

BoffinMum Sun 18-Aug-13 09:18:02

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 Sun 18-Aug-13 09:24:12

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.

justaboutreadyforbed Sun 18-Aug-13 09:27:10

but now schools aren't allowed to beat children they find objectionable, kids are now sent off to psychologists for diagnosis.

YY Boff!

edam Sun 18-Aug-13 09:27:43

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 Sun 18-Aug-13 09:35:21

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 Sun 18-Aug-13 09:40:47

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 Sun 18-Aug-13 09:40:55

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 Sun 18-Aug-13 09:43:57

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 Sun 18-Aug-13 09:47:24

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 Sun 18-Aug-13 09:50:34

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 Sun 18-Aug-13 09:53:28

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 Sun 18-Aug-13 11:23:53

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

PolterGoose Sun 18-Aug-13 12:15:19

Well done Fanjo flowers

dementedma Sun 18-Aug-13 15:13:54

Tweeted

Pawprint Sun 18-Aug-13 16:34:40

My late sister had learning disabilities and hated being stared at. It was usually kids who stared - they didn't know any better.

To be fair, most adults were kind (albeit patronising).

I do remember a rude (and drunk) woman in a restaurant openly laughing at her.

My mum was v sensitive about tactless comments.

My personal bugbear is people making a big deal about how beautiful/cute children with SN are - as though that 'compensates', somehow, for their SN.

Hi , I blog for Mumsnet about the humour I find everyday with my Asperger daughter. She's 17 and lots of people with younger ASD kids find it useful to see how their kids may develop. It isn't all scary, http://thenameoftheroseblog.com/about There is SO much fun in seeing life viewed through a different lens. My post this week is about a summer holiday job. Yes, they CAN work! They can laugh and they definitely see subtleties - just sometimes not the things you want them to see. http://thenameoftheroseblog.com/2013/08/16/the-aupair
Please follow me and post your stuff. I think we need all the support we can muster from each other.

HarumScarum Sun 18-Aug-13 20:35:08

I like this campaign a lot and will certainly share it, and the lovely Guardian article. Good work, MNHQ.

MissM Sun 18-Aug-13 21:18:32

Love the gallery. What beautiful children!

MissM Sun 18-Aug-13 21:23:49

I read the Guardian article yesterday, and have been thinking about the incident when a father in the park pushed his glasses down his nose to stare disapprovingly at one of the mother's children. I've been thinking about it all day, and imagining scathing put-downs I wish I could have given him on her behalf. What an ignorant, rude idiot.

kbewick Sun 18-Aug-13 23:30:02

Everyone looks at my son and says he's not special needs, you are just making it up for attention because he does not have a visable disability. They don't know the daily struggles we go through with him and never truly will

cazzap06 Mon 19-Aug-13 03:43:07

I used to end up in tears

Battling for my Grandson every day

Tutts , dirty looks , rude nasty comments

And it never , ever went away

Now I am choosing to ignore

And instead gaze into my Grandsons eyes

I'd rather see the world through this angels eyes

Than to the scorn , the misery & cruelty rise

He is happy even with all that he faces

They are not although they have it better

Walk in his shoes even just for one hour

And then let me know if you're still a hater!!! smile

justaboutreadyforbed Mon 19-Aug-13 05:17:55

That's lovely caz

Serenity16 Mon 19-Aug-13 12:13:59

This is a brilliant campaign. As a parent to a four year old girl with Autism, everything said rings so true, its the ignorance of others particularly adults. Lets get this message out there!!

JaneMumsnet (MNHQ) Mon 19-Aug-13 12:13:59

Hi everyone,

Thanks so much for your supportive messages so far, and for sharing the campaign so brilliantly via social media - it makes all the difference.

We've had a national newspaper request for an interview on the phone today - they'd like to talk to a Mumsnet user about the campaign's main issues and the reality of raising a child with additional needs (and to include a photo of you with your child).

If you're interested, would you PM me or email jane@mumsnet.com so that I can give you a bit more detail?

And we may have other interview requests as the campaign goes on; if you're up for being interviewed to raise awareness of this campaign then please do drop me a line so that I can take your details.

Many thanks,
Jane
MNHQ

Blu Mon 19-Aug-13 12:18:11

Good article in the Guardian.

Maybe the Guardian themselves will think twice before peddling the myths expounded a week earlier in this uninformed load of bollocks by their columnist Giles Fraser.

Dawndonnaagain Mon 19-Aug-13 12:48:31

Have rejoined so that I can share this. Twin dds chuffed to see their pictures up!

RowanMumsnet (MNHQ) Mon 19-Aug-13 13:37:25

Hello again

We'll come back and go through individual queries here soon, but we just wanted to post up this link to a Five Live interview with our own SarahMumsnet and another Sarah, a Mumsnetter, talking about the campaign. It starts at 2h 43m.

Great campaign mn thanks my dd is 3 and we are currently going through the process of having her assessed and diagnosed for autism. We know she has it and have help and support in place for her already we are just waiting for the official dx.

I have lost count of the amount of times people have said oh she's fine or she will grow out of it wait until she starts nursery. I know they mean well but I feel like shouting no she won't you don't understand!. When autism was mentioned my husband and I thought it was the end of the world obviously we worried about our daughter and how she would cope with the world around her. We made the decision to educate ourselves about autism and now realise it doesn't mean there is anything wrong with her it just makes her who she is.

Dd continues to amaze us everyday with new things she learns or even just coming to me for a cuddle. We couldn't be more proud of her she's our amazing, beautiful little girl and although she will have her challenges (as will we) we will face them together.

Anything that raises awareness of any type of sn is important in my opinion and I hope that this campaign will make people stop and think before you judge, our children may not be 'normal' to you but they are our normality and I wouldn't change mine for the world.

http://www.huffingtonpost.co.uk/katie-hopkins/why-must-everything-be-a-medical-condition_b_3751096.html

Can someone please steer KT Hopkins towards this campaign please......

I would like to see Hopkinitis as a diagnosed medical condition for the symptom of ignorant pignamous........

amessagetoyouYoni Mon 19-Aug-13 16:03:52

Fantastic campaign, MNHQ. Hope it gains momentum.

My DS has Asperger's Syndrome. The hardest part of dealing with his condition day-to-day - by a country mile - is dealing with other people's attitudes towards his behaviour, towards our parenting of him and to disabilities in general.

FanjoForTheMammaries Mon 19-Aug-13 16:04:34

She would probably just write something foul about it, knowing her

FanjoForTheMammaries Mon 19-Aug-13 16:11:54

She causes real harm with the tripe she spouts and doesn't care one iota.

fightingforjustice Mon 19-Aug-13 16:35:24

I am so glad that this campaign is gaining publicity - lots more is required to make the general public aware of how shabbily some children as well as the parents of children with disabilities/additional needs have been treated.
I regularly post on the MNSN board and some of the experiences of parents are absolutely shocking. My own ds who has an ASD has had to endure some terrible things and because of this I am pursuing a discrimination claim. This has resulted in threats of legal action against me if I persisted and attempts to discredit me and my husband. I am not deterred though and will carry on as if I win my case I will be highlighting just how badly so called 'professionals' can treat such children. I will be happy to talk to the media about this to increase awareness.

AmberLeaf Mon 19-Aug-13 16:46:24

My personal bugbear is people making a big deal about how beautiful/cute children with SN are - as though that 'compensates', somehow, for their SN

Maybe they just see a beautiful/cute child? I know my sons SNs take nothing away from his gorgeousness!

Unless you mean in a 'she/he looks so normal' kind of way?

Love the campaign. Thank you flowers

A professional told me that it was a shame about my ds, but at least he would good looking as that would help people accommodate him.

SallyBear Mon 19-Aug-13 17:12:27

Katie Hopkins (over-opinionated freelance bigmouth) has willingly earned herself such a bad reputation for saying vile things on tv, that surely most people will look at her outspoken behaviour as nothing more than shit stirring. Then we must do the same by ignoring her and focusing on making the 'This is my child' campaign the forefront of people's imaginations and understanding of life with a child/children who have Special Needs and disabilities.

There is a huge onus on the MNSN board about Autism, and whilst I have two DS with ASD it is worth bearing in mind that there are fellow Mumsnetters dealing with other disabilities that are just as important and valid to their families.

thescribbler Mon 19-Aug-13 18:19:31

If I was Giles Frazer I'd be suing Katie Hopkins for plagiarism. Isn't what she says pretty much what he says in less sophisticated language?

googlyeyes Mon 19-Aug-13 18:31:06

I agree we should completely ignore Katie Hopkins. Don't give her one iota of oxygen

EechieOchie Mon 19-Aug-13 18:32:45

Looking at the photos brought tears to my eyes. Lovely.

greener2 Mon 19-Aug-13 19:32:03

Thank you so much. We have fallen out with family and don't have much support as people don't believe us our dd is assessed for autism. Lack of knowledge is the main reason, people need to be educated so that we don't feel so isolated and alone. Doctors included smile

Dawndonnaagain Mon 19-Aug-13 19:58:43

DS is off to university in a few weeks. He has AS. The uni will be putting in support, we've had meetings and it's all arranged, but most importantly, off he goes to do Literature (not maths!) and live a life. I'm scared silly, but equally, he's made it and I'm so proud. One down, two to go. Yep, I have three children with Asperger Syndrome!

JustGeri Mon 19-Aug-13 20:13:09

Hi,
A couple of friends linked this article and campaign on their FB pages so I had to take a look. You see, I am no a mother but I AM THIS CHILD.
Though now 45+ years old I am not longer a child per se but I certainly remember being that child. And that child is now this adult.
I am not part of any formal organization but I do have my own website: www.justcallmegeri.com and a FB page of the same name: Just Call Me Geri.
I would be most pleased to offer any support, advice, encouragement, "Dos and/or Don'ts" or whatever may be useful for this awareness campaign. I enjoy going around to schools and talking with students because as far as we have come I love seeing the "light bulb" going on in the children's eyes as they start to "get it." I talk about my life experiences which include being given up as a baby b/c my biological parents did not want "this child" to be their child. In the late 1960s society was indeed undergoing changes as to what might be acceptable and I was given a chance to live out in society as opposed to being institutionalized. I was enrolled in public school in 1972 before it was legally mandated that special needs students be accepted. I was mainstreamed before mainstreaming became a term associated with educational practices.
I welcome anyone to contact me if there is interest.
In the meantime, all good wishes for a successful campaign. I have already shared this article and site on my FB page.
Best, Geri

Summerhasloaded Mon 19-Aug-13 20:26:11

There is a huge onus on the MNSN board about Autism, and whilst I have two DS with ASD it is worth bearing in mind that there are fellow Mumsnetters dealing with other disabilities that are just as important and valid to their families.

Sallybear is absolutely right. I have two children with ASD, but there are many here with other disabilities.

And yes, ignore KTH. She's being deliberately outrageous to get a following - all publicity is good publicity and all that!

missorinoco Mon 19-Aug-13 20:32:16

This is an excellent campaign, I especially like the "What you can do to help," section. Photos also good, agree the comment made by one parent - Would you know unless I told you? for many of the pictures.

Well done MN and all the contributors.

justaboutreadyforbed Mon 19-Aug-13 21:04:07

Giles Fraser just dropped massively in my estimation.

How do you get to see the other pictures in the gallery.

The first one is absolutely gorgeous but I'd like to look at the others and the buttons don't seem to work.

Also, the pic I sent in doesn't appear to be there. Not sure why but assume there must be a reason!?

glummum Mon 19-Aug-13 21:25:39

you might not like this, but I think you need to get rid of the word 'special' - children with disabilities and teens are not treated as special people when they arrive in the adult world - they are treated as scroungers, are friendless, and excluded from most things. My daughter who is nearly 21 has been patted on the head, has been told she is beautiful and touched by strangers in shops and I've been told to offer up her 'suffering' to a higher power, it's all a load of bull - its a tough world out there. Then there are the children who stare and their parents pull them away in case they 'catch it'. We need to concentrate on teaching 'ordinary' children, and 'parents' AND health care 'professionals' that disabled children/teens are equal to everyone else.

Yes, the MNSN board is dominated by autism but I guess that just reflects the predominance of autism in the population as a whole. Not a lot we can do about that, but I think we do try to be as inclusive as possible. Lots of threads about education, DLA etc are just as relevant to other disabilities. Threads celebrating little successes are always well supported.

The picture I sent in isn't there, either, Star.

piedpiper4 Mon 19-Aug-13 22:22:05

Thank you for mentioning selective mutism. My dd has this and as it's so rare people really don't know how to react around her. Reactions can range from anger (she's very rude isn't she?), fear (no, she really can't play with my child because.....well refer to the previous reason), to being patronised and babied. Education really is the key.

Pawprint Tue 20-Aug-13 03:05:59

Hi Amber - I'm certain the children are cute smile I just think some people can be a bit patronising.

SallyBear Tue 20-Aug-13 04:52:01

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.

ifyourehoppyandyouknowit Tue 20-Aug-13 09:36:18

Fantastic campaign, love today's guest blog. It's opened my eyes to the way some families are treated.

muchadoaboutsomething Tue 20-Aug-13 09:55:54

Hi. I just want to add that yes MNSN has a lot of threads about ASD. But there are so many other threads on their including some long running ones on other disabilities.

I have a child with another disability, but still find the ASD ones so useful. For example I took DS to a clinic last week where there was a teenager who was clearly very disabled, in a wheelchair and non-verbal. He had 3 adults with him (2 ambulance and I assume a parent) He made a lot of noises and I still have no idea how to answer DS when he says what's that noise? My heart went out to them and apart from just saying it was another person in as matter a fact a way as possible, I had no idea what to say in response.

SunnyIntervals Tue 20-Aug-13 10:03:20

See Paw, now I don't know what to do - if I normally saw a beautiful newborn baby I would say ooh she's gorgeous. Last month I met a very beautiful and unwell baby, with a rare generic disorder (only say 50 known sufferers) and she has some unusual facial features. I commented on her gorgeous eyes - should I not have done that? Worried now that I will have offended her parents.

Mrbooandsissyboosmum Tue 20-Aug-13 10:03:34

I am very pleased to hear about this. My son (16.5 months or 14 corrected) was born at 29 weeks and, as a result of contracting meningitis on day 3, has cerebral palsy, infantile spasms (a 'catastrophic' form of epilepsy), global developmental delay and is the happiest and loveliest boy you could ever meet. I started a blog about him and our family (including his lovely nearly 6 year old sister) a few months ago partly to work through some of these challenges and also to raise awareness. I wrote a post about people staring last week which lots of other parents of SEN children seem to relate to. The judgement is quite hard to deal with sometimes.

SallyBear Tue 20-Aug-13 10:26:24

Sunny - the fact of the matter is that when you have a child with a facial disfigurement or craniofacial issues, there comes a point quite quickly when you cease to see it yourself and just see the beauty in their eyes, or their smile, the softness of their skin, the curl in their hair. It's hard dealing with the stares and there have been occasions when I have said "Don't stare" to people because it infuriated me. My DD has so much spirit, that once you realise that you stop noticing her lack of ears, her scars, her hearing aid attached to her head and you see a courageous, funny, bright, and pretty girl with huge eyes who so much gumption that you marvel at what else she will achieve in her life. This is my child, and I love and admire her for her uniqueness, strength and compassion for others. You would too.

confusedmuch Tue 20-Aug-13 10:36:47

Thank you MNHQ and all the brave parents who stepped up to say what I couldn't, care don't stare x

RowanMumsnet (MNHQ) Tue 20-Aug-13 10:41:24

We're really sorry about the missing photos - not quite sure what happened but the most likely explanation is that they got lost in the welter of things that needed to be done over the last couple of weeks!

We will try to track them down and add them over the next few days. Apologies again - definitely nothing intentional (unless there was a tech issue with some of them).

SunnyIntervals Tue 20-Aug-13 10:42:06

Sally, when I think of that little baby all I remember are her lovely eyes and her beautiful soft skin. I hope she will be ok and go on to live a happy life.

It shouldn't matter to anyone if someone looks different. I would actually like to get rid of the whole idea of disfigurement - how people look should be irrelevant.

FanjoForTheMammaries Tue 20-Aug-13 10:42:54

Muchado..I would just say that was the teenager expressing his feelings.

SunnyIntervals Tue 20-Aug-13 10:43:47

Sally, your dd sounds just amazing and an inspiration.

SallyBear Tue 20-Aug-13 10:47:06

Sunny, she really is inspirational. She was runner up a few years ago for a local child of courage newspaper competition. We didn't enter her. Our local hospital did!! smile

alwayswaving Tue 20-Aug-13 10:49:24

this is a brilliant campaign and "long overdue"! I am the 61 year old mother of a 40 year old daughter with special needs who was eventually diagnosed with schizo affective disorder in her 30s. She was a slow learner and I thought for years she might be dyslexic. She was statemented when she was 10 after enduring what I can only describe as abysmal "help" from the local Council. I was/am a single parent had no help from anyone with her education or managing her at home - my family and anyone else we came into contact with thought she just needed a good slap I think .. she now lives in the North West in a care home and despite now living in London (long story) I see her nearly every other weekend thanks to Virgin trains. My life is still 100% bound up with her needs/happiness and whilst I have found the people who have looked after her over the years unremittingly kind, I worry every day of my life what will happen to her when I'm not around to make sure she's ok. when not overtaken with anxiety, she is also a very funny lovely person but unfortunately a bit loud in public, particularly if she's anxious in a crowd or a restaurant. I feel guilty every day as I feel as if I've abandoned her but tbh if I hadn't gone to make my own life, and instead stayed in the North West and tried to look after her myself, neither of us would be here now. I will follow this campaign with interest as the assistance people like my daughter need doesn't stop once they leave school.

VLE1974 Tue 20-Aug-13 10:49:32

I have had people speak very loudly next to me in the school playground saying things like 'well perhaps if she didn't work her son wouldn't be trying to gain so much attention' or 'all he needs is a little bit of discipline and good smacked bottom, he wouldn't be allowed to behave like that in my house'. The times I walked across the playground in tears biting my tongue, the times we saw invites being handed out to the whole class but my son. I felt like standing on the roof and shouting 'Listen you ignorant sods, he has autism and ADHD, we do the very best we can, try and show some understanding, he has feelings like us, and perhaps try living with him for a week to understand that he is actually a very loving, sensitive little boy albeit one who can be handful'. But of course I didn't. A move to a new school and a new start, medication and a lot more understanding from those around him have seen a lovely Little Man emerge who 80% of the time functions very well and very normally, yes he is a loner, yes he still does odd things but he is more accepted and helped now, we still do worry about the future, who knows what that holds but we will get through it together as a family. I wouldn't change him, the ADHD and autism make him the awesome boy he is x

SunnyIntervals Tue 20-Aug-13 10:56:43

My little DS has had hearing difficulties and so has had speech delay and frequent tantrums due to his frustration at not being able to speak.

Just seeing how he has been treated and stereotyped as stupid, slow, odd and spoiled and how I have been viewed as a pretty indulgent and slack mother makes me want to cry and gives me the tiniest inkling of the challenges faced daily by families.

Please treat all children with love and respect!

exaltedwombat Tue 20-Aug-13 11:04:58

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

FanjoForTheMammaries Tue 20-Aug-13 11:18:07

Well hello Katie Hopkins.

muchadoaboutsomething Tue 20-Aug-13 11:22:13

wombat for what it is worth I think my life with a child with CP who can't walk, and would therefore count as having a real disability in whatever classification system you use is considerably easier than my friends life with a child with ADHD.

sickofsocalledexperts Tue 20-Aug-13 11:23:44

Exalted wombat has a bunch of thick, Unexamined viewpoints backed up by no real experience or even curiosity. Dull.

FanjoForTheMammaries Tue 20-Aug-13 11:26:01

My DD has autism and complex learning difficulties and low tone and motor delay and by far the hardest aspect to deal with is the ADHD symptoms she has.

Imagine coming on to this thread and posting such ignorant ill informed tripe.

Maybe read the campaign

FanjoForTheMammaries Tue 20-Aug-13 11:28:32

Accusing people of " celebrating their child's problems" is incredibly offensive and ignorant of what people go through.

You should be ashamed wombat

sickofsocalledexperts Tue 20-Aug-13 11:29:03

She just wants a ruck fanjo. Ignore the silly cow

DebsKent Tue 20-Aug-13 11:29:20

I chatted on BBC radio Kent this morning about this fantastic campaign. Looking forward to 1pm

VLE1974 Tue 20-Aug-13 11:30:29

Wombat perhaps spend a week 24/7 with a child with ADHD and then form an opinion as to whether it is a disability or not.

My husband now in his 40's if assessed would now be 'labelled' ADHD as well. Yes he wasn't labelled in the 1970's when at school, instead he was expelled at the age of 5 and sent to a 'special school'. At least today it is recognised and yes it does help, as there is more understanding (from the majority) and more help in school. Instead of him being 'labelled' naughty, people work with him not against him.

FanjoForTheMammaries Tue 20-Aug-13 11:31:57

Good idea sickof..

Hopefully her post will be deleted..if not it stands to show why the campaign is much needed and what ignorance is out there smile

Dawndonnaagain Tue 20-Aug-13 11:32:40

exalted Perhaps you could come back when you've done a little research, there's a dear.

Bonkerz Tue 20-Aug-13 11:35:14

I have struggled with this for many years. At age 3 my son was labelled awkward, at age 5 he was quirky, at age 6 he was naughty and challenging. All these were labels from professionals in schools and nurseries. As his mum I knew he was struggling for other reasons but I had to battle the health system, school system and general public prejudices against my perfect little boy. When I restrained him in public I was called all sorts of names when I only did it to stop my son hurting himself and others. After a huge two year battle that saw me quit my job and almost lose my marriage and sanity my son was diagnosed with autism and oppositional defiant disorder. We managed to find the perfect school and paid A lot of money to fight the LEA to place ds there but we won at huge personal expense both financially and mentally. Since diagnosis the road has not been smooth sailing. Ds has been excluded from social groups and play schemes and the battling for therepy and support continues even now ds is 13! I've never had help with his behaviour at home and have to research and try things out. Sometimes I fail dramatically and this isn't helped by the judgemental attitudes of the public. My son appears perfectly 'normal' he is handsome and funny but suffers hugely with anxiety which can be triggered by the smallest thing. I no longer take my son out alone. It affects every day life for me and I constantly worry about his future.

TheNinjaGooseIsOnAMission Tue 20-Aug-13 11:49:24

I doubt you've offended anyone sunny, I think it's quite easy to tell from someone's tone whether they are patronising or paying a genuine compliment smile like the lady I met in the supermarket who came to coo over dd3 when she was a baby and asked why she was wearing glasses, all absolutely fine except as she walked off she said, well at least it's not a facial disfigurement, I had to pick my chin up off the floor shock

or the 2 older ladies that fell over each other because they couldn't stop staring at dd3 when she was a baby, or the looks and comments I get for parking in a disabled bay because I'm 'obviously not disabled' (which in itself is an issue!) until I walk round the car and get dd3's wheelchair out, I could go on but it gets a little repetitive grin

but then there's also the lovely people that smile or talk to me and dd3, like the lovely lady that was trying to walk past dd3 trying to get to grips with steering her wheelchair who laughed and asked dd3 if she'd like to dance, or the lady that sympathised with me when dd3 (7) was crying over the sweets placed next to the till that she couldn't have.

my current favourite quote is 'kindness is a language that the deaf can hear and the blind can see' (Mark Twain) quite apt given our circumstances

I have to agree sallybear, your dd is a gorgeous girl!

SallyBear Tue 20-Aug-13 11:53:30

Thanks ninja smile

ColinFirthsGirth Tue 20-Aug-13 11:55:41

Well done Mumsnet for this fabulous campaign!

JakeBullet Tue 20-Aug-13 11:59:12

Piss off wombat, my chid has autism AND also ADHD...its the last bloody "label" I would have wished for him but I am bloody glad he has it because since starting the medication he has leaned to read (within three months of beginning the medication).

He is achieving now because of a diagnosis and appropriate treatment.

I think Wombat probably works as a senior SEN Officer in my old Local Authority.

NeoMaxiZoomDweebie Tue 20-Aug-13 12:11:00

The label is only words on a page....and it's not a label but the key to a set of interventions which can help a child. Without the label, the child has no advocates in the professional world.

JakeBullet Tue 20-Aug-13 12:17:29

THREAD HIJACK

NeoMaxi...you have a FABULOUS name there.....was watching The Breakfast Club recently and laughing out loud at that line.

THREAD HIJACK OVER.....smile

JakeBullet Tue 20-Aug-13 12:31:26

I really did not want my child reduced to a set of labels, I looked long and hard at all aspects of our lives and blamed myself for every little thing.....working part time so he had two days a week in nursery, not giving him a brother or sister to learn "sharing" with (ignoring the fact that he had a legion of other children in nursery to practice those skills with), what did I eat/drink or not eat/drink in pregnancy. You name it and I probably considered it.

I considered (and still do) that I had a quirky and very active little boy. However, it became apparent as he got older in nursery and then in school that his quirks were far outside normal development. He is active but not climbing the walls and as such his behaviour in school has never been an issue. His academic progress was very slow and he entered Y3 unable to read or write despite the rest of his peers having mastered these skills. ADHD was the last thing on my mind, he was diagnosed with autism at age 7.5 yrs and the ADHD diagnosis came 10 months later. I spent six months refusing medication until a paediatrician gently explained to me that DS was not reaching his potential because his brain could not focus. I agreed to a trial of medication and it was amazing.....within three months and at the age of 9 years my son could finally read.....and read fairly confidently. Its been a long slow process but he has gone from not reaching national curriculum L1 to L2s and 3s within two years

An example of the significance of medication for my child.......the school actually have to explain their academic results because my son has skewed them by making 23 points of progress in TWO years....anyone who examines the results think it's a typo and it always has to be explained.

More than anything though I have a little boy who has been handed his self esteem back. He now knows that he CAN do it and that he can match his peers instead of always feeling like the stupid child in the class who needs help. It has been wonderful to watch his confidence in his abilities soar.....and it is all down to a "label" and the right medication.

I am so proud of him for all his has a achieved and all that he will continue to achieve. I love him to bits.

RowanMumsnet (MNHQ) Tue 20-Aug-13 12:53:55

Hello again

For the Tweeters among you, just wanted to flag that we're about to start our #ThisIsMyChild Twitter party (at 1pm today) - do please join us there (@MumsnetTowers) if you can.

Thanks

neriberi Tue 20-Aug-13 13:14:28

Thank you mignonette. Campaign tweeted and facebooked grin

Lancelottie Tue 20-Aug-13 13:39:31

OK, I would never put a photo on here because he dislikes them, but..

DS1 has just phoned me to say he'll collect his younger sister from her holiday activity camp, by bus, because he's free and I'm busy mnetting
He is 17 with Asperger's and a full-time statement. At primary school they referred to him as 'the biggest problem we've ever had to face'.

He is bloody lovely.

This is my child.

mignonette Tue 20-Aug-13 13:43:59

KH may rail against unnecessary medication but will somebody please prescribe her some much needed Vagisil because she is an irritating cunt.

mumannie123 Tue 20-Aug-13 14:00:24

Have just posted a blog in recognition of this campaign. www.afeedersdigest.wordpress.com Let's spread the word

Dawndonnaagain Tue 20-Aug-13 14:16:24

Yay, Mumsnet retweeted me. I could write an essay on ASDs and Student Finance!

GobbySadcase Tue 20-Aug-13 14:41:52

Some nice threads with anti disability sentiments today.
Which proves that this site talks the talk only.

It's still 'valid debate' to discuss abuse of facilities provided for disability, something enshrined in law.

BuskersCat Tue 20-Aug-13 14:45:42

I missed the twitter party, but remember that you can use #tags on facebook too.

edam Tue 20-Aug-13 16:18:53

link, gobby?

edam Tue 20-Aug-13 16:28:05

right, found the thread you are talking about gobby and I think you are being unfair to MN.

Pawprint Tue 20-Aug-13 16:52:20

Just looked at the pics - utterly beautiful pics, aren't they?

insanityscratching Tue 20-Aug-13 16:54:43

I think it should be enforced reading tbh because just look at the Katie Hopkins thread to see the utter bullshit written regarding ADHD and Autism diagnoses.

Pawprint Tue 20-Aug-13 16:56:07

Sunny - sorry I worried you, of course you said the right thing!

I was in a hurry to have a quick ciggie when I wrote that. Didn't really think it through.

GobbySadcase Tue 20-Aug-13 17:27:03

Do you Edam? That's nice.

rightsaidthread Tue 20-Aug-13 17:59:11

Lancelottie that bought a tear to my eyes. How blooming lovely

Sirzy Tue 20-Aug-13 18:16:18

Bit late to the thread but what a fantastic campaign!

I think it is vital that we all talk about disabilities and differences. Children shouldn't be growing up scared of disabilities they should be normalised and questions should be answered as they arise. It shouldn't be down to parents of children with disabilities to change, or the children to change it is down to parents of all children to teach children to respect others and their differences. Perhaps if we can do that we can make it easier for future generations.

Looking through the photos just now - what beautiful children they all are, its nice to see something which sees them as the individuals they are rather than their disability.

My DS is in the gallery! So proud I could burst. smile

This campaign is long overdue, and desperately needed. I really hope it reaches as far as it can across all forms of media. If every mumsnetter shared it via one form of media facebook/twitter/email/local news, just think how far it could reach!

SunnyIntervals Tue 20-Aug-13 18:46:19

Just looked again at the lovely pictures and saw there are some new really nice ones too - what a lovely idea to have such a great gallery smile

twistyfeet Tue 20-Aug-13 18:52:19

Great campaign. I hope it stops the starers and maybe my little girl will get invited to some parties at school. She has severe cerebral palsy, epilepsy and autism but is as bright as a button and in mainstream school. None of the parents ever invite her to parties and she notices sad

Sirzy Tue 20-Aug-13 18:57:37

Thats awful twisty sad

my best friend at primary school had CP and the way some people treated her was really eye opening especially the amount of it which came from the parents.

I hope she finds some proper friends soon, reading your post has brought a tear to my eyes.

twistyfeet Tue 20-Aug-13 19:05:02

she has friends. Its the parents sad

Sirzy Tue 20-Aug-13 19:13:04

I will never understand how parents think thats an acceptable way to behave sad

westcoastnortherner Tue 20-Aug-13 19:24:50

Thank you MNHQ this is a wonderful campaign, I read a really disturbing piece in the newspaper this morning which proves why this is needed...

www.timescolonist.com/family-of-autistic-boy-asked-to-leave-community-or-have-him-euthanized-1.593594

gordyslovesheep Tue 20-Aug-13 20:29:12

thank you MN for this - I think my neighbours think I am an awful mum with feral vile kids - my girls are amazing, but challenging and prone to anger and shouting - but we are a great family and I love them so much x

SunnyIntervals Tue 20-Aug-13 20:29:33

Twisty, I wish you lived where I do. I would invite her with such pleasure.

Pawprint Tue 20-Aug-13 20:31:34

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

SunnyIntervals Tue 20-Aug-13 20:36:32

I am going to make sure I am never ever that parent, Twisty and will call others on it too.

sickofsocalledexperts Tue 20-Aug-13 20:37:46

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 Tue 20-Aug-13 22:00:10

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 Tue 20-Aug-13 22:03:41

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 Tue 20-Aug-13 23:45:42

Hollie, that slow comment is horrible. When my son was looking at one nursery I explained about his deafness and speech delay and the room leader just said "oh we cater for a wide range of abilities", as if being deaf and having speech delay made him less able sad we did not go with that nursery!

ZingWantsCake Wed 21-Aug-13 06:11:09

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 Wed 21-Aug-13 06:14:44

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

FanjoForTheMammaries Wed 21-Aug-13 07:02:58

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

FanjoForTheMammaries Wed 21-Aug-13 07:03:51

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 Wed 21-Aug-13 07:41:33

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?

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 Wed 21-Aug-13 08:36:33

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 Wed 21-Aug-13 08:41:29

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 sad

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 Wed 21-Aug-13 08:48:46

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 Wed 21-Aug-13 10:13:01

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 Wed 21-Aug-13 10:51:51

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 Wed 21-Aug-13 11:01:21

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!

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 Wed 21-Aug-13 13:51:22

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

Sirzy Wed 21-Aug-13 13:55:46

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 Wed 21-Aug-13 14:07:34

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.

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 Wed 21-Aug-13 20:05:44

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 Wed 21-Aug-13 20:57:55

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. :-)

SunshineMMum Wed 21-Aug-13 22:30:17

Really great, loved the myth busters and the guardian article. Thanks so much for this MN.

Trigglesx Wed 21-Aug-13 23:20:22

I am a bit saddened that in this day and age, people still act like ADHD is a made-up thing. My 7yo DS1 has ADHD (along with a number of other disabilities), and it is so hard sometimes to see him struggling. He has difficulty with impulse control and just cannot modify his own behaviour at all. I can sit and watch him when an "impulse" is taking over - if you try to distract him or encourage him to do something else, you can see this "impulse" like a fishhook in his brain, dragging him back, over and over, his eyes keep tracking back, his head keeps turning, he can't focus, he can't hear what you're saying... it just keeps dragging him back... It must be so difficult to live with that daily. Like he has no control over himself, and he just doesn't understand it at all, due to his age and his other disabilities.

People that say ADHD doesn't exist have simply not lived with it.

Holliewantstobehot Thu 22-Aug-13 10:01:40

Triggles - also that you get a diagnosis really easily! My son has had symptoms of dyspraxia since he was 18 months but only got a diagnosis of dyspraxic tendancies at 5 and an actual diagnosis of dyspraxia at 9. I have never met anyone who has walked into a gp and come out with a diagnosis 10 minutes later.

JakeBullet Thu 22-Aug-13 10:18:06

ADHD is awful, my lovely DS was never any problem in class, no behavioural issues at all beyond hiding if something scared him (he is autistic) but ADHD meant he didn't learn to read while all his peers raced ahead. his self esteem was shot to pieces by the time we had a diagnosis...he was 8 by then and still on ORT Level 3.

A diagnosis and then appropriate treatment was life changing for him...within three months of going onto medication he could finally read with confidence....it just gave his concentration enough of a boost to see him achieve. I am so proud of him and so happy to see his self esteem soaring because now at the age of 10 he knows that he CAN do things and that he CAN achieve along with his classmates.

It is important to diagnose ADHD, I wouldn't wish the diagnosis on any child but if they HAVE ADHD then a diagnosis can be positively life changing.

Trigglesx Thu 22-Aug-13 10:31:15

DS1 is 7yo and is attending a specialised school as he could not cope with all the sensory overload in a mainstream school. His ADHD affects him literally ALL THE TIME. He has the impulsive kind - no sense of danger and can be a runner and then might hide due to being overwhelmed. He is all over the place from 5am when he wakes up every morning until 8pm when he finally goes to bed (only sleeping due to medication, and even then he's up during the night regularly). He cannot have the meds commonly given to children with ADHD such as Ritalin, as we have a family history of heart problems, and thus the medications would be a high medical risk for him. He already deals with his disabilities, plus asthma and eczema, I'm not about to risk him having heart problems as well!

He is a sweet lovely child, very good reader (recently assessed at 15yo+ reading level), however he struggles to apply the information he acquires to actual life situations. So he can recite road safety, but will then race out in front of a car if not held onto, just so he can see what make the vehicle is (not realising he is putting himself in danger).

I do not understand how people can look at these children and say it's bad parenting or naughty children, when it's so painfully obvious that the behaviour is beyond the control of the children at all.

Holliewantstobehot Thu 22-Aug-13 11:30:18

Triggles - you are so right. Even my sister remarked that when my son was getting angry and frustrated he couldn't seem to get himself out of it. I give him consequences and follow through but it makes no difference. He just can't seem to change his mindset. Whereas my dd and my dnieces would stop and do. Last week he had a meltdown over 2p - when he finally calmed down even he was bemused that he had lost it over 2p! It's like a switch flicks in his head and all you can do is manage him through it until he comes through the other side. It is not the same as my dd who rarely gets like that an if she does it's over two minutes later.

ViviPru Thu 22-Aug-13 11:36:21

To all the parents of children living with ADHD, there can be real hope. DH (diagnosed as an adult) was described by his consultant as one of the most profound cases he'd worked on. He is now not only successfully managing his condition with medication and other strategies, he's running his own business, happily married (to me!) and generally getting on with life. Some days can be a struggle, but then isn't that the case for everyone?!

Trigglesx Thu 22-Aug-13 11:52:19

Yes, some days can be a struggle. Some days can be a nightmare. I can honestly say that this is profoundly different from when I was raising my NT daughter on my own, so I wouldn't necessarily say "isn't that the case for everyone?" as it kind of minimises it IMO. Yes, it's a struggle, but to be honest, whether or not it's a struggle for everyone doesn't make it LESS of a struggle. Unfortunately sometimes that type of comment makes people feel that they don't have a right to voice their concerns and stresses because, after all, we're all struggling. And I think that adds to a parent's stress and isolation.

Absy Thu 22-Aug-13 12:05:47

Awesome campaign MN!

ViviPru Thu 22-Aug-13 12:25:43

Sorry Triggles, I now realise how glib that comment sounded, I didn't really choose my words very carefully there. I don't mean to belittle people's very real day by day challenges. All I was (albeit very clumsily) trying to say was that while DH's DM went through hell and back during his childhood, he has managed to emerge a functioning, happy and successful person, but acknowledge that we still have the ups and downs faced by everyone.

Genuine apologies.

JakeBullet Thu 22-Aug-13 12:50:47

It is good to hear positive stories and outcomes though Vivipru, I am a Mum who constantly worries about hat her son might face in the future so I love hearing about how others have grown and managed their challenges. I am hoping that as DS gets older he will learn many more coping strategies.

Trigglesx Thu 22-Aug-13 12:54:47

ViviPru I'm sorry - I'm not in a great place right now, and I suspect that is colouring my viewpoint a bit. Yes, it sounded a bit glib, but I understand you didn't mean it that way. Thank you.

I think that having a few years of people saying "oh, all kids are like that" and GPs saying "it's not that big a deal, kids all develop differently" and "boys are slower than girls, don't worry" and friends and family saying "don't worry - all kids are difficult - all kids can be a struggle - oh my kid does that, it's normal" each and every time you voice a concern - you start to feel that you have no voice at all and you begin to doubt your sanity. I honestly sat and cried when the SENCO at DS1's school told me she thought he needed to see a paediatrician to be assessed. She was the first one that actually LISTENED and didn't tell minimise my concerns.

And I know many other parents that have dealt with this as well. THIS is why children are often not assessed or given support early enough - because nobody LISTENS to the parents and their concerns - they just fling out offhand comments about how it's normal and not to worry. (and No ViviPru I'm not having a jab at you with that - I'm simply pointing out what happens in general)

ViviPru Thu 22-Aug-13 13:06:46

I understand. We were fobbed off MASSIVELY when DP was taking the first steps toward a Dx too. It was horrendous and your post has made me realise how much I've since 'conveniently' forgotten what a struggle it was. Glad to hear your concerns are starting to be taken seriously now.

ViviPru Thu 22-Aug-13 13:07:08

DH I mean! (newly married - can't get used to that!)

Trigglesx Thu 22-Aug-13 13:14:58

ViviPru congrats on marriage grin. If it makes you feel any better, about 2-3 years after H & I married, I accidentally signed my name with my maiden name - complete and utter glitch mentally on my part. It happens. lol

I'm a firm believer that GPs should have more training in child development so they recognise and are aware that these things need to be assessed as young as possible. People shouldn't have to FIGHT to get a referral for assessment.

ViviPru Thu 22-Aug-13 13:18:39

Couldn't agree more. DH's GP's response to the suggestion that he might be dealing with a case of adult ADHD was to actually laugh in DH's face. You'd think it was the 70's still.

SunshineMMum Thu 22-Aug-13 13:29:20

I agree with Triggles, its the fight for everything from diagnosis to services that has worn me down. I don't feel that I have the same outlook on life, or parenting anymore.

muchadoaboutsomething Thu 22-Aug-13 14:05:57

I also agree with triggles. Although this always sounds odd I do frequently think having a child with an obvious physical disability can be easier. My DS has cerebral palsy and can't walk. I can't be fobbed off about that, and while I wish all children were like that no-one will ever say that to me. He was also in the system from birth as he was very prem so i alsways had at least one consultant on side.

For what it is worth we still had to appeal DLA, and fight for treatment and qite probably a statement given it is a "medical/physical" condition rather than ane ducational one. That's the thing which is so pernicious with society at the moment, that there is still the need to fight and a temptation to put one peson against another. Even with the campaign (and this thread) there is a sense of come disabilities count and some (asthma, diabetes) don't. It really shouldn't be like this.

muchadoaboutsomething Thu 22-Aug-13 14:11:56

sorry I should have spell checked that!

Dawndonnaagain Thu 22-Aug-13 17:04:50

much you are right, this governments insidious little narrative has taken a strong hold on Joe Public. When did it come down to the deserving/undeserving poor? When this government took over. I am not saying that the last government was any better, but they did not create this narrative in the daily fail press.
We have in thought, at least, returned to victorian values and it's very scary.

CouthyMow Fri 23-Aug-13 00:58:45

I will echo Sparklingstars comments about asthma - most people are shocked by how much that alone has impacted on my DS2's life. He is also physically disabled from his hypermobility syndrome and has ASD and suffers from encoparesis. He is 9, and tall for his age, and is more like a 5/6yo I the way he acts and behaves. The looks I get outside with him can on some days make me feel like never going outside again, and on others like I want to beat the crap out of people. The other side of my wonderful DS2? He loves nature, he is an avid History buff - he knows more about History than me! He is so kind and caring that he will cry if another child is upset, he is very environmentally aware, and is the most thoughtful, helpful child you could ever meet.

Then there is my wonderful, gorgeous, infuriating 15yo DD. She has ASD too, and she also has moderate LD's, mild hypermobility syndrome, cardiac problems and she is partially deaf. She has learnt to 'fit in' better than my DS2, but in a conversation with her, her issues are instantly apparent. However, she is one of the best chefs I have ever met, she is wonderful with DS3 (not so much with my DS1, but never mind...), she tries hard to do her best, and she got a 'B' in Health & Social care this year, with her extra help.

And 2 weeks ago, my 2y7mo DS3, who had already been dxd with multiple life threatening allergies, hypermobility syndrome AND hyperactivity 'with a high probability of ADHD' was dxd as having 'global development delay with autistic traits'. He is also the cheekiest, cutest, happiest toddler I know, is patient and kind with animals, and he loves climbing, taking things apart to see how they work, and playing horsey rides on people's backs. (Though that one doesn't go well when he launches himself at stranger's backs...)

I also have epilepsy and arthritis. I love Formula One, music, cross stitching, crochet, Cardmaking and papercrafting. I am a Lone Parent to four wonderful DC's, and I love them all.

Four out of five people in my house are disabled in one way or another.

We are a ragtag rabble, but the world is a brighter place for us being on it!

sparklingstars Fri 23-Aug-13 06:35:34

CouthyMow and thank goodness that you are.

My DS struggles with anger sometimes, he is learning now to tell people to leave him alone and is also learning when he needs to leave people (me!) alone because he is winding me up. He's not on the spectrum as far as we know, he's just like it at home so it's probably my poor parenting TBH. The real pain is if he is not doing as he is told, e.g. clearing away his dinner plate and has to be told several times then he can get angry and then end up with a mild asthma episode so it's a fine line between him having to do as he is told and not having an episode.

Sirzy Fri 23-Aug-13 08:00:12

Sparking - I have found a link between DS asthma and his anger, when he is in the early stages of an attack he will get really angry and lash out for no reason. I assume its to do with being scared of how he is feeling? We have the same issue with tantrums triggering attacks which makes it hard to control his behaviour without giving in to stop an attack.

Couthy wow you have your work cut out, but what a fantastic bunch you sound.

ArthurPewty Fri 23-Aug-13 08:01:52

Message withdrawn at poster's request.

sparklingstars Fri 23-Aug-13 11:23:06

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.

Sirzy Fri 23-Aug-13 11:37:41

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

sparklingstars Fri 23-Aug-13 12:23:20

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.

Sirzy Fri 23-Aug-13 12:30:52

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!

sparklingstars Fri 23-Aug-13 12:39:15

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.

lottieandmia Fri 23-Aug-13 18:19:53

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.

lottieandmia Fri 23-Aug-13 18:25:46

'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.

RippingYarns Fri 23-Aug-13 18:29:44

lottie

i was on that thread about DLA and HRM, there were quite a few of us singing from the same hymn sheet as you smile

lottieandmia Fri 23-Aug-13 18:30:33

I know Ripping, but even one person saying it is unacceptable.

DebbieReynolds Fri 23-Aug-13 21:15:32

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.

Sirzy Fri 23-Aug-13 21:25:56

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!

ArcticRoll Fri 23-Aug-13 22:39:23

Fantastic campaign.

DevonCiderPunk Fri 23-Aug-13 23:21:16

Have been following closely - thought I ought to post in support, rather than just reading and nodding! What a validating campaign - well done us smile

jadenash2013 Sat 24-Aug-13 12:46:38

Been said already but well done for raising awareness!

spots Sat 24-Aug-13 13:17:28

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.

slippersock Sun 25-Aug-13 17:45:48

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! sad. If the schools that are teaching our children can think and act like this what hope is there?

lottieandmia Sun 25-Aug-13 18:37:22

slippersock - that is terrible. I cannot believe they expected that sad angry Inclusive, my arse!

SunnyIntervals Mon 26-Aug-13 18:48:45

Slipper, that is awful sad

sparklingstars Mon 26-Aug-13 20:55:54

Slipper that sounds really awful. Do you mind me asking what he was expected to apologise for?

JakeBullet Tue 27-Aug-13 09:00:29

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!!

SunnyIntervals Tue 27-Aug-13 09:16:57

Starlight, suggesting parents not apply to a particular ms school should be a reportable disciplinary offence IMHO sad

My comprehensive school coped beautifully meeting the needs of my friend (wheelchair user with very limited hand and neck movement) in 1986 and the whole of one part of the upstairs school was made accessible just for her - wheelchair lifts installed etc. The head mistress was very supportive. So why is adapting for one child still a problem in some schools nearly 30 years later?!

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.

SunnyIntervals Tue 27-Aug-13 10:18:24

Starlight I find that truly disgusting sad I know I am preaching to the choir, but we should be trying to show children that everyone is equal when it comes to education and schools should not be behaving like this.

TBH I can understand it.

No school in this competitive age wants to get a good reputation for SEN especially an outstanding school in an affluent area (which is where parents of children with a statement are likely to try first), as they get less FSM and other monies and are desperate to keep their SATS scores. If they are kind to one kid or engaging with the parents who knows where it will lead?

SunnyIntervals Tue 27-Aug-13 10:28:51

Understandable, but not where we should be at. Schools should be genuinely educating their community, not fighting with each other for money. If the funding was based on value add for every child and that was judged in a sensible way for children with SEN then schools would be incentivised to do what I would hope most right-thinking teachers and school HT would want to do anyway.

And SEN money needs to be both adequate and ringfenced.

I know of a primary school, that in the last 2 years has managed to 'get rid' of 6 pupils with SEN. Their SATS this year were 100% across the board, which justifies this decision to the HT and to the 'other' parents.

The bullying nature of this school has thankfully, raised some interest in a Local Councillor but I doubt it will go further than his 'interest'. Those 6 families won't get the support of the other parents, nor of the staff of the school, nor the LA.

SunnyIntervals Tue 27-Aug-13 11:16:48

Could families in this position go to the media with MNHQ support as part of this is my child?

Do you have any thoughts MNHQ about what could be done to support parents where children are being forced out if schools?

To my mind this deserves to be a national scandal sad

I don't know the families myself. I have a reliable source but I can't post the details atm as that will close down the options for the families, but they are taking action.

But the thing is, there is absolutely NO incentive for a school to work with parents of children with SEN, and huge incentives for them to find ways of ensuring that their school isn't either picked, or suitable.

Schools get money for children with SEN, but they have to then use this money before the LA top up anything over £10k.

If they managed to spend none of their SEN money on SEN, the LA doesn't get it back. The school gets to keep it. With the new rules I imagine it won't be long before HTs could award themselves a bonus for their 'financial efficiency', or simply attract families who will ensure their SATS results are going to be high without having to spend money on support for those children.

I have to add though that many SENCOS and teachers have very little training in either SEN or the law, and what they do have rarely comes from unbiased or independent sources.

Often they can truly believe that a child would be better placed elsewhere. Unfortunately they don't understand that 'elsewhere' just doesn't exist.

SunnyIntervals Tue 27-Aug-13 11:50:06

Sadly Starlight, I think what many in the general public still think is that all children with any degree of SEN should be educated in Special Schools. They do not realise the places don't exist.

I think it is also easy for a potential school to see the availability of 'elsewhere' or not beyond their concern as they have quite enough to do with the children that are IN their school, with the hoops they are required to jump through and the ever-increasing demands and lists of criticisms.

I honestly can't see what a child with SEN, can bring to a school except extra work, extra hassle and a cost. In some ways I think it is less problematic for schools admitting children without a statement because their legal entitlement to support isn't a statutory responsibility of the LA to be delivered by a school.

Those without statements can be admitted and then 'managed' rather than 'educated', through the school system for as cheaply as possible, so not having a statement can make it easier to get place. If you so much as hint that you have expectations for your child at the show-around you'll be sent packing.

Interestingly, having a statement means you can chose your school. But who in their right mind would send their children to a school that made it clear from the outset that they would in the best case, tolerate your child, but in the worst refuse to deliver on their statutory duty and fulfil the provision in the statement?

The statement is the child's protection of their provision, in law. But those of us on the SN boards have story after story of schools having no regard for what is written in the statement, with the key to enabling schools to do this the closed doors to parents, and the inability of their children to communicate what goes on.

SunnyIntervals Tue 27-Aug-13 13:40:14

Awful sad

No incentive should be needed for any school or teacher other than the desire to do the best for every child.

If, as it seeks is the case, we have created a system where that incentive is in competition with others, we need to do something about it.

SunnyIntervals Tue 27-Aug-13 13:40:29

Seems not seeks

Tidypidy Tue 27-Aug-13 21:34:20

Thank you MNHQ for including a picture of my ds in the gallery. It makes me very proud.

ViviPru Wed 28-Aug-13 09:46:02

Is yours the owl child, Tidy? I've become somewhat enchanted by him.....

JakeBullet Wed 28-Aug-13 14:03:23

My experience seems to be all too common then sadly. What makes me crossed is that the SENCAN seemed utterly horrified by what I have experienced.....and seemed to indicate it was out of the usual order f things but it isn't from what I can glean from other parents.

I CAN understand why they do it but.....

JakeBullet Wed 28-Aug-13 14:05:02

Hmmm....pondering on visiting all the local MS secondary schools with a question sheet and a tape recorder. hmm

SunnyIntervals Wed 28-Aug-13 14:29:23

I have reported my post to MNHQ and asked if there is anything they think they could do to highlight the plight of families where dc with SEN are forced out of school.

JakeBullet Wed 28-Aug-13 15:35:46

The thing is that my DS has to go SOMEWHERE, he is deemed too able for the special schools and having visited them I agree as socially he is very able....of a bit odd.

It is very dispiriting to think that I have to send him to me of these schools which really don't want him.

On a positive note one of the schools I visited has a very good name for supporting children with SEN. Again the SENCO is of the "he is going to struggle all the way through" variety but I know enough of the experience of other parents to know the school does a good job.

wishtoremainanonymous Wed 28-Aug-13 19:20:45

sunny it's a nice idea about publicising this sort of practice in the media and it would be nice if some big names with legal clout could protect those that want to speak out. The problem is that you still have the LA to contend with if you dare to criticise a school that has a reputation for being very inclusive. They will back their schools all the way and, as I've found, even cover up for them. Complaints go nowhere - I've even been threatened with legal action if I dare to speak out about certain things. I've uncovered various illegal practices but it's all been denied.They think that no-one will actually believe you if you tell anyone as 'where's the proof?'. Usually it's their word against yours and as they are 'professionals' society prefers to believe them than the parent of a disabled child. I happen to have however a huge amount of written evidence about what happened to my ds and how appallingly he was treated - they're not as clever as they think they are. I'm just waiting for the right moment to publicise it.
Jake - I know what you mean about secondary schools. When I went to talk to a Senco she totally blanked my ds. She looked and said 'is that him over there? I heard that he might be coming here'. She then wittered on about various 'woo' strategies that she used to help her 'special children'. She said that she had a child similar to ds but he had always managed very well there. When I asked what strategies were used for managing meltdowns or angry outbursts she said ' we don't have those in school - I call the parents to collect the child so there's no disruption'. angry
Needless to say the school is thrilled to have recently received an 'outstanding' Ofsted rating.

I agree. It is impossible to prove that this kind of thing is happening because you might be able to say 'SENCO whinged about how much he would cost the school if we placed him there and told us that his 1:1 support wouldn't be used exclusively for him as there are children much more deserving disruptive', which is all they would have to say to out a parent off.

But that is hardly a media story. And when the LA were questioned they'd just say 'well the school got an outstanding rating and the SENCO has a good reputation and wouldn't have said that'.

wishtoremainanonymous Wed 28-Aug-13 19:37:19

I would definitely recommend that anyone who has concerns obtains both their child's school and LA records - it's absolutely shocking some of the things you can uncover. Most people (apart from those on those on the SN board) would be totally horrified by the things I've uncovered.
I am waiting for the SS knock at the door as that seems to be the usual tactic to try to silence 'troublemakers'.

Tidypidy Thu 29-Aug-13 20:16:40

Vivi - my ds is walking across a log tightrope at Heligan. Did you spot his insulin pump?!

Trigglesx Sun 01-Sep-13 07:53:11

When we went looking at our local junior school, in the process of deciding whether or not DS1 could cope, the SENCO there told us that they were very inclusive - then proceeded to point out the separate lunch room, the separate classroom if needed, kept hearing the word "separate".. hmm And she capped it off by showing me the DENTENTION room, saying "if he is having difficulty coping, he can sit in here for awhile." The detention room?!?! So basically, he'll think he's being punished for struggling to cope? No thanks. angry

He is now in a lovely specialised school that is brilliant for him.

SunnyIntervals Sun 01-Sep-13 08:34:18

Triggles, that really makes me angry that you were treated like that.

Trigglesx Sun 01-Sep-13 08:39:00

I made it quite clear that it was unacceptable to put a child in detention in that situation. What makes me quite sad and angry is that there are obviously other children being treated this way at that school. Thankfully, DS1 is at a lovely school, but not all children are that lucky.

Chemayne36 Mon 09-Sep-13 15:40:00

Thankyou thankyou thankyou!!!! I've just stumbled across this campaign after reading an article in the guardian.
I have a severely disabled 15 year old boy and you have basically wrapped up all my thoughts and feelings into this campaign!! Someone is finally listening and doing something!!! This is kinda an epiphany for me to come across like minded people and genuinely know what it is like to experience what me and my family do on a dally basis!

I've had someone tell me I should have let him die after a traumatic birth and weeks in intensive care and I had no right to bring him into society and burden taxpayers with our problems. (It was hospital errors that caused his disabilities)
That's the most hurtful thing that's ever been said to me but there is a long long list of other people's negative and damn right rude remarks. I've had people walk in lamp posts for staring so much (we got the last laugh there, my son foubd that very funny!) and a woman with young children have a physical fight with me as his wheelchair was protruding from a till and she couldn't get her buggy! Pathetic!

Thanks once again!!!

RowanMumsnet (MNHQ) Tue 10-Sep-13 09:55:51

Aw thank you Chemayne. Do please have a look at our SN: Children and SN: Teens and Young Adults talk sections. The campaign was build from the responses and experiences of the posters on our Special Needs boards.

FanjoForTheMammaries Wed 11-Sep-13 14:30:06

"this is my child"..but people can talk disparagingly about her noises being annoying in cinema and even say she cannot go..because we wouldn't want to stifle debate.

Shocked to the core by recent responses from MNHQ when had been impressed with campaign and recent support for posters affected by disability.

FanjoForTheMammaries Wed 11-Sep-13 14:47:57

To answer "yes out of consideration to people that want to see the film that they paid for without those distractions!" to the question "should people with disablities causing them to make noise stay away from the cinema" is not deleted in the interests of "not stifling debate".

I thought MNHQ had moved on from the old days and took a harsher line on disablism now but clearly I was wrong, sadly.

FanjoForTheMammaries Wed 11-Sep-13 15:33:24

good..it was eventually deleted..but other similar ones, were not.

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