Here some suggested organisations that offer expert advice on SN.

'This Is My Child': our long-planned campaign on children with additional needs

(402 Posts)

MNHQ have commented on this thread. Read here.

RowanMumsnet (MNHQ) Mon 10-Jun-13 12:51:07

Hello

As some of you will remember, we started this thread a few months back to get your input about a possible campaign around children with additional needs.

The thread was hugely informative - thanks very much to everyone who gave their views. Many of you were asking for a broadly-focused campaign encompassing visible and non-visible disabilities among children, teenagers and adults, and across many platforms (poster advertisements, television campaigns and so on). Much as we'd like to do this sort of thing in an ideal world, realistically we're bound by the resources that are available to us. We've also found, over the years, that campaigns with a very specific focus can do much better than those with more general messages. In addition, we're mindful that many of the big campaigning organisations in this space have already undertaken more general awareness-raising campaigns to do with capacities and needs of people with disabilities, and we try not to re-invent the wheel (although we're always happy to add our voice to such campaigns when asked).

So we've decided to go with an awareness-raising campaign focused on the ways in which caring for a child with additional needs can change a family's life, and the myths about disability that can have negative impacts on such children and their carers. We're going to call it This Is My Child (again, thanks for all the input) as we think it's simple, arresting and suits the aims of the campaign best.

We're going to be addressing myths like:

MYTH: children with behavioural disabilities are just naughty and need a firm hand
MYTH: people in receipt of disability-related payments are likely to be 'scroungers'
MYTH: children with additional needs in mainstream schooling are drawing resources and attention away from other children
MYTH: it's easy to get a Blue Badge and mobility vehicles
MYTH: a non-expert can accurately judge the capacities and potential of a child with additional needs

We're going to be putting up a myth-busting page (similar to our We Believe You myth-buster here) which will be heavily featured across the site and promoted from our social media accounts, hopefully with some mainstream press coverage. We're also going to be featuring guest blogs on the topic and holding an event on Twitter using the hashtag #thisismychild; watch this space for details.

There are a few things we'd really like your help with:

1) Do let us have suggestions for myths you'd like busted (there's a limit to how many we can do, but it would be great to hear your thoughts).
2) Do you have any Top Tips for how to deal with situations in which you - particularly as a parent or carer - have been subject to ignorant or hostile responses from members of the public when out and about with your child? We'd love to put together a list of ninja ways to defuse, inform or simply get rid.
3) To go with the 'This Is My Child' theme, we're asking for MNers who are parents of or carers for children with additional needs to send in pictures of their child, which we will use for a photo gallery on the site. These can be completely anonymous and needn't be linked to your RL or MN name if you'd rather not; the idea is to personalise the issue for members of the public. If you'd be up for doing this, do please send in a digital photo (a roughly 500-pixel-sized image in a jpg, gif or png format) along with a caption (which can be pretty much anything you please: 'This is my child. He's eight and he loves Star Wars' - that sort of thing) to contactus@mumsnet.com, with the subject heading 'This Is My Child, FAO Campaigns Team'.

Thanks for reading this far <wipes brow> - as ever, do please let us know what you think.

sickofsocalledexperts Mon 10-Jun-13 13:39:58

Fantastic news, thank you. Putting the power of Mumsnet behind those of us dealing with our children's SEN means a lot.

One myth I would like to tackle is that words like retard or mong aren't hurtful and are "just a bit of fun" or "ok because everyone else uses them, even in Hollywood films".

My son has autism and learning difficulties, but calling him a retard is as hurtful to us as a racist word would be.

The other myth, or rather an old style of behaving that I think needs reintroducing for a gentler society, is "it is rude to stare". "Care, don't stare" would be my mantra.

My boy will make funny movements and sounds in public, and I understand that children will stare, but adults should know better. We were always taught it's rude to stare, but today no-one says that. It is hurtful to be gawped at, or abused, when out and about. Let's make it unacceptable to give abuse to the disabled, just as it is now totally unacceptable to level racist abuse.

googlyeyes Mon 10-Jun-13 13:57:05

I very much appreciate this campaign going ahead, and This Is My Child is great. Because DS1 IS my child...I carried him, gave birth to him and love him and want the very best for him, in exactly the same way as my other 2 children, and in exactly the same way as parents of NT children.

Awareness is definitely improving, particularly re autism, but there is some way to go.

As sickof says, staring is one of the worst things. If ds1 is kicking off in public the VERY last thing I need is anyone gawping. He is NOT a freak show, just a frightened, overwhelmed little boy who doesn't know how else to express his frustration other than melting down. That is part of his disability, and something completely out of his control.

coppertop Mon 10-Jun-13 14:07:52

I'd love to see some of the ASD myths busted. These might be too specific for your campaign but I'll add them anyway:

He/she can't be autistic because they:

- make eye contact

- are affectionate

- have an imagination

A more general myth would be when people assume that all children with a particular SN are the same. This one is usually followed by something like: "Well my neighbour/sister/cousin has a child with that and they can do XYZ, so your child should be able to do that too!"

There was a recentish thread on MN which illustrated this perfectly. A parent was unable to get their child with ASD to school on time in the mornings due to not being able to wait at the gates. I think there was also an issue with lining up in the playground.

This was followed by many posts along the lines of "Well I can get my 15 children to school on time, and we have to get there via the Himalayas! Why can't you manage?"

Sadly there were even a few who said, "My child has ASD and gets to school on time every day. Why can't you???"

So it's not just people with no experience of SN who may need to be reminded of this point.

sickofsocalledexperts Mon 10-Jun-13 14:10:39

What is that phrase like "if you've met one child with autism, you really only know one child with autism" or something like that? Meaning they re all so different, just like all nf kids are different

FancyPuffin Mon 10-Jun-13 14:11:38

In rush so can't post properly but just wanted to that I think that's a fantastic idea for a campaign and thanks and [gin] for HQ.

babiki Mon 10-Jun-13 14:16:38

... But he looks 'normal'
- this has been coming up again and again, was even told by paediatrician last week that we are lucky ds looks normal.

Both the word normal and the assumption that disabled children always look different are wrong.

Bluebirdonmyshoulder Mon 10-Jun-13 14:27:36

The campaign sounds excellent, thank you.

I love sickof's 'Care, don't stare' mantra. A really excellent point.

Also can you do something about the word 'normal' and how the word 'typical' is a much much better word. Something like, 'when you talk about 'normal' chidren you imply my child is abnoral. My child isn't abnormal, merely untypical.' Sure you'll think of something better!

Bluebirdonmyshoulder Mon 10-Jun-13 14:29:14

X-post with babiki!

Started writing my post and then went to change a nappy which is why there's so long between the two.

Oooh, fab

Myths -

1) Not all disabilities are visible - yes my intelligent, socially capable, well-behaved walking child with all his limbs does, actually, have a disability. Just because you can't see it doesn't mean its not majorly affecting him every hour of his life.

2) "Disabled" toilets are not just for people in wheelchairs.

3) No, he isn't going to grow out of it.

4) No, I can't just give him an injection / carrot / smack to make him better.

5) No, he wasn't born with it. Disabling conditions can strike at any time. And I don't think it would be any easier if he had had it all his life.

6) Telling the parent of a newly-disabled or newly-diagnosed child "well at least it's not cancer" is not helpful.

7) Just because I look like I'm coping right now doesn't mean it's not bloody difficult, alright?

Top Tips for dealing with ignorant strangers -
1)Smile, Nod, and Ignore!
2)Educate your child and his siblings about his disability, very loudly. Loud parenting rocks.

MNBlackpoolandFylde Mon 10-Jun-13 14:42:12

1) Not all disabilities are visible - yes my intelligent, socially capable, well-behaved walking child with all his limbs does, actually, have a disability. Just because you can't see it doesn't mean its not majorly affecting him every hour of his life.

2) "Disabled" toilets are not just for people in wheelchairs.

^ This time a million!
My sen dd was bollocked in Selfridges by a man on crutches with a broken leg because she used the disabled toilets because there was a massive queue in the ladies and she cannot wait.

FanjoForTheMammaries Mon 10-Jun-13 14:45:25

Wonderful!

One myth I'd like to tackle is how much training or experience the average class teacher gets in teaching children with SEN.

Almost none and that covers ALL SEN.

I think that the idea that school is some kind of salvation for children with SEN really needs to be highlighted as the myth it is.

Can someone PLEASE find out when Einstein actually started talking!

popgoestheweezel Mon 10-Jun-13 16:00:24

Fantastic campaign!
I second coppertop's myths to be busted: "I'd love to see some of the ASD myths busted. These might be too specific for your campaign but I'll add them anyway:

He/she can't be autistic because they:

- make eye contact

- are affectionate

- have an imagination

A more general myth would be when people assume that all children with a particular SN are the same. This one is usually followed by something like: "Well my neighbour/sister/cousin has a child with that and they can do XYZ, so your child should be able to do that too!"

And please don't assume that SEN automatically means aggressive/bad behaviour/uncontrollable. Children with SEN can misunderstand situations and get frustrated due to their learning difficulties that arise, but they aren't to be feared.

Oh yes, schools. The myth that they have to cater for children with additional needs. If the needs aren't educational needs, its purely voluntary. If your child has a physical disability that means they cannot attend school without support, the school can say "no, find another school".

2old2beamum Mon 10-Jun-13 17:05:22

aah Downs they are so affectionate and they love music no, they can be little rats like everyone else

FanjoForTheMammaries Mon 10-Jun-13 17:06:32

My DD must be great at maths and very serious as she has ASD..

Err no.

proudmum74 Mon 10-Jun-13 17:07:04

Great campaign, thanks MNHQ

My DD has Down Syndrome, deafness & mobility issues. Some of the myths i'd like you to cover are:

1) the phrases "Down's child", "those children" or "retarded" are highly offensive, please don't use them!
2) people with Down's are not "always happy", they have the same range of emotions as any other child
3) I love my DD, end of. No, I don't "wish I could cure her" or wish "the ante-natal tests would have been right so I could have aborted her!!"
4) I don't think "it is a shame" that DD has Down's (see point 3) & I don't want to hear about how "in my day the likes of them would have been locked away"
5) DD has learning difficulties, but she is not stupid. She knows when you are staring and/or are talking about her in front of her, so please don't!
6) statements of special education needs are not something that the LEA give out readily. Parents have to fight for months for them, so next time you tell me that "I'm really lucky to be able to just jump any school waiting list", think how you would feel to (a) have a child who is disabled enough to need one or (b) have to spend 6 months having a group of professionals send you almost daily reports pointing out, in great detail, what is wrong with your child. Then spend the next 10 years fighting for these provisions, then come back & tell me how lucky I am!!!
7) Oh, and whilst we're talking Statements, it doesn't help you jump queues anyway!

Sorry, but of a rant there! wink

proudmum74 Mon 10-Jun-13 17:17:06

Thought of some more, on a roll now! grin

On her deafness:
1) she doesn't look deaf hmm - never known how to answer that one, usually I just smile
2) shouting at her (in a similar way to an Englishman abroad) doesn't help! If anything it makes it worse as it distorts your word pronunciation.

On her mobility issue:

1) DD inability to walk was not laziness, hers or mine. We spend hours doing physio, and "just forcing her to try" really isn't the answer!

On having Down Syndrome:
1) There is a spectrum of ability, just like any other child, so please don't make assumptions about my DD before you meet her.

inappropriatelyemployed Mon 10-Jun-13 18:27:10

Einstein didn't talk til he was four

Myths:

1. You don't make a child with additional needs independent by leaving them without support

2. People with Asperger's aren't just rude, sometimes they find it hard to speak or process what you are saying

3. You can't tell whether someone has a neurological condition by looking at them

4. The system has schools for every type of child - it doesn't

5. Schools and LAs understand the Equality Act - they don't

6. Providing additional assistance to children with additional needs is a matter of equality rights not conditional charity

7. Some children just can't learn - perhaps you're not teaching them properly

bialystockandbloom Mon 10-Jun-13 18:27:46

Myth: that there are loads of any 'services' offered to families, staffed by highly qualified experts.

The truth is that there is a huge dearth of suitable, expert support, is subject to a postcode lottery (due to funding), and even if it does exist, it's a massive, massive battle for just about every family with SN in it to find out about and access such support, and then go about getting funding for it.

Basically most families are pretty much left to it, and parents have to become overnight experts.

Not sure if this will fit with the campaign, but I'd love to see this message getting out - if more people realised this it might make for a bit more general support when out and about.

inappropriatelyemployed Mon 10-Jun-13 18:29:34

Oh - and thanks for doing this!

'Parent's are seeking dx to excuse their lack of parenting skills'.

Well some 'might' but they won't get very far, - Almost all pre-dx assessments are multi-disciplinary, can take several years and particularly with developmental disabilities the parents often have to prove beyond doubt that they haven't 'caused' their child's disability in a culture that prefers to blame them rather than fund support.

Perhaps helpful at dx stage, but by about 6months post-dx no-one wants to hear poems about Holland, Angel Mothers or being chosen by God.

googlyeyes Mon 10-Jun-13 18:47:52

Oh God yes.

Please don't ever, ever refer to me as a special mother

All that does is reinforce the idea that me and mine are set apart somehow. The last thing on earth I want.

Children with disabilities can be loving and need love and tolerance, just like any other children.

Summerloading Mon 10-Jun-13 19:07:15

My dc isn't overweight because I feed him junk food. He has sensory difficulties and can only tolerate certain foods.

My dc isn't overweight because I don't provide him with opportunities for sports and physical exercise. He has poor coordination, low muscle tone and joint pain.

My daughter isn't underweight because she is faddy and I spoil her.

PolterGoose Mon 10-Jun-13 19:24:07

Going back to the original post that led to all this, I want people to understand that if they just adapt a teeny bit that it can have a humungous positive effect for our children.

Whether that is folding up your standard buggy to make room for a Mac Major, not being bothered by the squeals or running commentary of the child behind you at the cinema, being pleased that your socially adept child wants to invite home a child with SNs (even though all the other mothers are horrified)...

PolterGoose Mon 10-Jun-13 19:26:32

Oh, and remind people that children with special needs occupy the full range of intellectual abilities

'that child is just clingy because he's the youngest/babied/spoilt'

No, he has massive anxiety issues, talking about him over his head while I'm trying to peel him off me at the playschool door is not helping with that.

'He probably just doesn't bother talking because he's the youngest and the others talk for him/get what he wants anyway'

No, if only. Instead we had hours of screaming because nobody knew what he wanted

'He makes lovely eye contact/speaks well, he can't have ASD' (said most often by HCPs!)

No. Just no, I'm not even going to justify that one with an explanation

'Have you tried a reward chart?' (again, HCPs!)

angry

I could go on all day but what it all boils down to is that people don't seem to understand that a child with no obviously visible disability may still have profound neurological and physical issues.

cornypedicure Mon 10-Jun-13 19:44:28

Looks great MNHQ!

eggandcress Mon 10-Jun-13 20:16:58

For 2% of children with disabilities, mainstream activities are not appropriate so offering to provide a carer/befriender to take them is not helpful.
The parents are not being over-protective rejecting this offer - they know through trial and error that mainstream activities are not suitable for their child. They may look physically fit/like they could enjoy hockey or sailing but they are UNABLE TO PARTICIPATE BECAUSE OF THEIR DISABILITIES.

(Sorry this has gone in capital letters because it is aimed at people who should know this but they are trying to spread their budget so thin that they have forgotten and need a nudge)

Thank you for this campaign MSHQ, it is great - I am happy to help in way you need.

eggandcress Mon 10-Jun-13 20:23:01

That first post was on behalf of my ds.

Now for my dd who is visually impaired:
1. I know a lot of people wear glasses - this is usually to correct their vision - but the vision of people who are visually impaired cannot be corrected by glasses, it improves it but does not correct it.
2. I know she does not look blind, she does not crash into things - this does not mean she is not visually impaired.
3. Never ever sit her at the back - why is that so hard to remember?

eggandcress Mon 10-Jun-13 20:24:22

Sorry I meant 'MNHQ' in the first post

mymatemax Mon 10-Jun-13 20:27:49

Fantastic, well done MN.

I would like people to know that "this is my child & he is perfect"

Myth - Children with autism are all the same... wrong, they are as unique as you or I.

My son has autism, cerebral palsy & learning difficulties but he still gets upset if people stare & talk about him as if he's not there!

Please be kind, he is my child

bialystockandbloom Mon 10-Jun-13 20:28:22

being pleased that your socially adept child wants to invite home a child with SNs

Polter I totally agree, that is so important (as long as it isn't in a patronising/smug way as an act of charity, iyswim)

1:1 support only makes the child dependent if the 1:1 support is rubbish, undertrained or inexperienced.

Parents of children with disabilities don't want 'funding' for their child, they want an adequate education. If that comes in the form of an experienced volunteer then that is fine.

Please don't deny my child their rights because you have come across someone who is, in your opinion, more severe/needy/worthy/poor/vulnerable that has less. Please fight for them, instead of justifying to yourself the removal of my child's provision.

beautifulgirls Mon 10-Jun-13 20:41:28

Myth: My child looks happy and is not badly behaved therefore she must be fine.
Reality: She is struggling to cope with existing whilst doing her best to not upset adults around her and inside she may be a whole heap more stressed than you can imagine. This will later come out at home where she feels secure as tantrums and tears. Please be sensitive to her needs when I explain these to you instead of dismissing me as a neurotic parent.

Myth: Parents want a label for their child so they can get a step up the ladder compared to other children by getting extra support at school.
Reality: Most of us have been through the mill of assessment and diagnosis prior to getting an accurate answer and the emotional stress is more than many will imagine. Support at school is not that easy to get even with a diagnosis in some cases.

Myth: All children with ASD will be badly behaved and maybe violent with no eye contact.
Reality: ASD really is a spectrum and each child presents differently. Those labelled as high functioning may have better communication than classic autism but they can still be severely affected by their difficulties. Not only that but girls in particular can be very clever at hiding their issues and on average are diagnosed a lot later than boys as even professionals will not always see the issues easily.

Around 1 in 52 boys have autism. That's quite a significant percentage of the population and you're likely to meet them on the bus, in the supermarket, at school, at work and possibly even marry one.

Add the rest of the SN population and they aren't such a small minority. Help them to get intervention and tolerance early enough to enable them to become as independent and as contributing to society as they are capable.

The UK is way behind other countries, most of whom have precious little in welfare state provision and simply cannot afford to ignore the needs of their most vulnerable in their early years as we do in the UK.

2tirednot2fight Mon 10-Jun-13 20:54:47

How about the myth that all parent partnership services support parents - they dont or the myth that local authorities are accountable for SEN failures or the myth that inclusive school policies will be evident in reality- they are just there for Ofsted. Or the myth that Ofsted gives a dot about children with additional needs or disabilities - thats just for show too or the myth that SENDIST panels promote equality in their findings!

Am I having a bad day or what?

Oh 2tired sad. So so sorry. No idea whether it makes you feel better or worse to know that you're not the only one that has been there.

Yes. The myth that LA's are accountable for the provision of SEN. The truth is that assessment is never independent of funding implications as the LA both conduct the assessments and provide the funding. Financial incentives to deny need.

greener2 Mon 10-Jun-13 21:05:00

This is great, I have mailed a few celebrities in the past to try and get a campaign / awareness but no avail.
I would like these sort of myths addressed too
He/she can't be autistic because they:

- make eye contact

- are affectionate

- have an imagination

- They look normal

- They play with toys

- The doctor says there nothing wrong with them (you have to fight to bust these myths with the doctors too!!)

- Its parenting, no boundaries, poor skills

eggandcress Mon 10-Jun-13 21:18:43

mymatemax

"This is my child & he is perfect"

I absolutely love that you put that

ilikemysleep Mon 10-Jun-13 21:51:17

My son has autism and selective mutism. The autism bit is well covered in other posts but for the SM bit:

It's not ELECTIVE mutism, it's SELECTIVE. My child has no control over the anxiety that causes the words to freeze in his throat. He is not choosing not to speak, or being rude or controlling. He is overcome with anxiety, frozen with fear, in the way others with different phobias might be when they see a spider or a needle.

Selective mutism is NOT linked to trauma. There is a condition called traumatic mutism which is triggered in response to a huge stress situation, such as abuse. Children with selective mutism are no more likely to have been abused than anyone else.

For schools: Even though my child is not noisy, disruptive, or badly behaved, it does not mean that he does not need a significant amount of support and intervention. Please don't pass him over because he is quiet.

Trigglesx Mon 10-Jun-13 21:53:05

First of all, thanks to MNHQ.

Then..
- my child has ASD, but he is not "just like Rainman". hmm

- my child has ADHD. It is not a made up excuse because he is spoiled or not disciplined. It is real, and he does not just need a smack. And no, giving him to you for a couple weeks would not "straighten him out." hmm

- using a wheelchair doesn't necessarily mean he can't walk. It means he has disabilities that sometimes require the use of a wheelchair. There is a difference. (Not a child, but Cherylee Houston on Corrie is a good example of this)

- he's not having a tantrum, he's struggling to cope with something - generally sensory overload

- where there is one disability, another often goes hand in hand - such as ASD/ADHD/hypermobility/dyspraxia, etc.

- Maclaren Majors (and other SNs pushchairs) are the equivalent of a wheelchair for children. Parents generally cannot just fold them up like standard pushchairs on the bus - they should be allotted the wheelchair space just like any other wheelchair user.

- SNs pushchairs and wheelchairs are expensive and can be quite difficult to manoeuvre through shops, on buses, etc. Parents are not likely to have their child in them unless they really are needed. Use common sense in that regard please. And making comments about "older children in pushchairs" and "lazy parenting" and such are not particularly helpful.

- they are children, not just a disability.

ohmeohmyforgotlogin Tue 11-Jun-13 08:02:52

Marking place. Will come back later.

Greenandcabbagelooking Tue 11-Jun-13 08:41:40

I don't have a disabled child, but it makes me cross when people refer to children as "the Down's Syndrome child". He or she has a name, but if you don't know it, then surely "a child who has Down Syndrome" is better?!

tabulahrasa Tue 11-Jun-13 08:51:09

- A diagnosis is not a label for behaviours that all children display, it is a medical opinion that a child has significant difficulties compared to a typically developing child.

- A diagnosis for a condition like autism or ADHD is never ever given just because a parent asks for it, there is a long process of assessment, sometimes lasting years, where several medical experts decide whether a diagnosis is warranted and what that diagnosis might be.

RowanMumsnet (MNHQ) Tue 11-Jun-13 08:55:16

Morning everyone

Thanks so much for all of these - there are some brilliant ideas here <is excited>

Any more tips for dealing with unenlightened members of the general public?

proudmum74 Tue 11-Jun-13 08:59:30

Sorry - was in a bit of a ranting mood yesterday, bad therapy session!

My more thought through ones would be:

Myth: All people with Down's are happy
Reality: People with Down's have exactly the same range of emotions as any other person

Myth: LEA give Statements out to any child as it improves the schools grades
Reality: Statements are incredibly hard to get. My DD has Down Syndrome, is deaf, has poor vision and mobility issues and I still needed to spend 6 months of almost daily assessments to prove she needed help

Myth: Your child can't be deaf, she can speak
Reality: There is a spectrum of deafness, but she can still only hear certain letters

Myth: All people with Down Syndrome are the same
Reality: There is a spectrum of ability, just like with any person, therefore just because your boyfriend's, mum's neighbour once passed someone with Down syndrome on the street, does not mean you know what my child is like

Myth: Parents of SN Children prefer to only mix with similar people
Reality: Being a parent of a SN child can be incredibly isolating. yes, our child has a SN, but we still fundementally have the same needs as you. Please come over & say "Hi", we promise we won't bite! smile

As to ways of coping:

Professionsals:

Yes, in an ideal world all services would be beautifally aligned, but the reality is they're not. To get the most out of the services, you need to:
(i) become an avid note taker
(ii) network across the various health providers / council
(ii) Be assertive
(iv) Project manage

General publc:
1) Rudeness
I know it's upsetting, but some people are just rude / ignorant. Don't rise to it, just smile & feel sorry for the fact that they will never get to know someone as wonderful as your DC!
2) Assumptions
Sometimes people make assumptions based on their lack of knowledge It doesn't necessarily make them bad people; educate where the person wants to learn or smile and walk away when they don't
3) Pick your battles
You will face enough daily fights for your DC, so sometimes it's best just to let things go!

starfishmummy Tue 11-Jun-13 09:09:20

Myth: my child looks disabled therefore it must be easier for me than it is for parents of children with "invisible" disabilities (and this comment came from a mother at a children's epilepsy support group; I didn't bother going a second time).

Gunznroses Tue 11-Jun-13 09:24:12

myth: Tourettes is that condition were the person swears <followed by shrieks of laughter and look of horror by said person>
reality: Not everyone with Tourettes suffers from involuntary swearing, infact only 10% of sufferers do.

myth: You are imagining these tics!
Reality : I am not. If a person has vocal and motor tics lasting for more than a yr, it is Tourettes. Sometimes the tics happen so quickly if you blink you can miss it.
Reality: Just because most tics are normal body movement doesn't mean its not a tic. You need to be aware of the the context in which said tic happened.

myth: Well your ds looks fine to me, where are the tics you mentioned ?
Reality: Children sometimes hold in their tics if in unfamiliar surroundings, but then let them out in the safety of somwhere else like home.
Reality: They are not performing monkeys.

itsnothingoriginal Tue 11-Jun-13 09:32:44

Wonderful campaign thanks MN flowers

You already have brilliant posts above so can't add to much but a few things that have upset me recently:

BLUE BADGES: yes I still use a M&B space at the supermarket for dd who has mild CP and tires easily. She's 6 and CAN walk but doesn't mean she finds it easy. As we've said, blue badges dont grow on trees so other parents, please don't give me dirty and hostile looks for using a space - your toddler can probably walk better than my 6 yr old!

WRT disabled children taking up too much time and resources in class, I had a parent say to me recently that they were unhappy that their child was being asked to help my dd with the straps on her 'special chair'
at school. Apparently it was too much of a responsibility for her hmm

wibbleweed Tue 11-Jun-13 09:40:01

Just wanted to say - great campaign flowers

There are some excellent suggestions on here - don't really have anything wise to add.

Having just last week received an AS dx for DS1 (9) as well as DS2 (6), who is already diagnosed, I just want to say - "these are my children. Yes they are challenging. Yes, there are some things we struggle to do as a family that many of you take for granted. But I wouldn't change them for the world..."

Nerfmother Tue 11-Jun-13 09:43:39

Here's an annoying sentence, not a myth:
He's fine with me

FiveSugarsPlease Tue 11-Jun-13 10:07:53

I'd also like to see some of the ASD myths busted.

I am truly stunned at the number of people who still don't understand autism is in fact a spectrum disorder.

My daughter has HFA and I am repeatedly told by strangers/friends/family that she can't possibly have autism because:

she has a sense of humour

she talks/mingles with other people

she doesn't scream/shout/cry/hit all the time (meltdowns are very rare actually, perhaps 1-3 times a year)

she has an imagination

she is bright, but not a genius (Rainman... that film has a lot to answer for)

I've had her in tears all morning because she is panicking about having to sing with her class in assembly today. She is worried about the noise, and thinks she won't be allowed to cover her ears because she has to keep her hands joined in prayer (Catholic school).

She eventually calmed down when i assured her she can sit with her teacher or can cover her ears.

I know full well that when she goes to that assembly, she'll pretend that her ears aren't sore because of all the noise, she'll stare straight ahead and will sing her heart out. No one will know a thing about how worried/tearful she was this morning.

She's 5!

Girls with HFA are apparently much more likely to try and fit in with their NT peers, which is why their behavior is normally worse at home, because they've been cooping everything up all day at school.

SallyBear Tue 11-Jun-13 10:10:26

I have DC with ASD and deaf DC. Nothing has been mentioned about having craniofacial differences. My DD is due her 26/27th (been so many I've lost track) surgical procedure this August. She has had 13 years of stares, pointing, disgusted looks and comments and whispers - all because she looks different. She notices, I notice. Somebody put on here earlier "Care don't stare". That would be nice.

MeAndMySpoon Tue 11-Jun-13 10:13:09

This is fantastic, MNHQ! smile Still pmsl at Starlight's request that we finally find out for once and for all, how old Einstein was when he started talking. grin DH and I have taken to adding a couple of years to his supposed age every time we mention it. I think we're at about 37 now. wink

FiveSugarsPlease Tue 11-Jun-13 10:14:27

I think it would also be wonderful that schools dedicated some time discussing disabilities with their pupils. i realise this is not part of your campaign, but i'm just mentioning it as an aside.

Surely it would encourage understanding/compassion among everyone, perhaps preventing another generation growing up with disabilist attitudes.

I personally feel that so many people are disabilist because they are genuinely scared of the unknown. Perhaps if they knew more about disabilities/the effects of disability in a person, they'd be far more understanding.

OxyMoron Tue 11-Jun-13 10:37:26

Myth: Educational needs and medical needs are separate issues.
Reality: If the school/LA refuse to meet a child's medical needs how can they possibly attend in a fit state to learn?

Myth: Children with medical needs and disabilities without SEN have enough legal protection and don't need to be covered by statements/EHC plans/etc.
Reality: Many, many children in this situation are being failed and parents often don't have the time, money & energy to fight in law courts using the equality act.

myth: people with disabilities don't can't or shouldn't have sex or have children.

myth: said people will be disappointed if their DC have the same disabilities

Myth: said people will be glad if their DC don't have the same disabilities.

Reality: I love all my DCs.

I personally don't mind answering other peoples or DCs questions and prefer to educate random curious 3yr olds rather than having their DMs dragging them away shushing them blushing madly. But I realise this is not for everyone.

GobbySadcase Tue 11-Jun-13 10:55:18

Anything you can do to reduce hate against people with disabilities would be appreciated.

I've not known hate like I've experienced in the past three years and I have life long disability myself.

So some focus on the 'not scroungers', not getting something for nothing, not taking from 'you' aspect would help.

I've faced criminal damage and taunts because people think that as there is disability it's fair. The media stirring it hasn't helped.

Oh, and let us know where to send pics...

Rahila Tue 11-Jun-13 10:55:39

I lost my son, Nihal, who had cerebral palsy, 12 years ago. Looking through this thread, I feel sad that so many of the issues remain despite the battles we fought. I got Nihal into a mainstream school, at a time when he had no 'right' to choose his school. We took our case to the Special Needs Educational tribunal and won although he was non-verbal and it took a lot of 'proof' and testing (what an able-bodied child would never have to endure) to show that he could keep up with the curriculum. I have a written a one-woman monologue which tells the story of our life, our triumphs and struggles, his cheekiness, his tendency to swear when he finally found language which is being performed until 22 June. thecockpit.org.uk/show/dont_wake_me

On 19 June, Richard Rieser, a formidable disability rights campaigner who's an expert on inclusion in mainstream schooling, will be holding a post-show discussion where he will be looking at how to deal with some of the issues raised in his thread. I'm sure he would be happy to answer/advise one on one after the main discussion if anyone's interested.

bialystockandbloom Tue 11-Jun-13 11:26:42

MNHQ do you mean tips for families of SN children on dealing with the public?

Or tips for the 'general public' on how to approach families with SN children?

I think the latter is the crucial thing, and would fit in with the campaign.

RowanMumsnet (MNHQ) Tue 11-Jun-13 11:50:26

bialystockandbloom

MNHQ do you mean tips for families of SN children on dealing with the public?

Or tips for the 'general public' on how to approach families with SN children?

I think the latter is the crucial thing, and would fit in with the campaign.

We did actually initially mean the former (following a couple of reports of a thread a few weeks back in which the brother of a child with SN had been put in the position of needing techniques to 'defend' his brother, who was being subject to some abuse by other children) - it was suggested to us that we might want to collect coping strategies for these situations.

However, tips for the 'general public' on how to behave like a civilised human would also be good - fire away!

Niklepic Tue 11-Jun-13 12:06:19

My son has Duchenne Muscular Dystrophy and associated learning difficulties. He turns 8 this week and is currently still mobile but is slowing down and is using his chair more and more. He DOES need to use his wheelchair - just because he can still walk doesn't mean that his legs get tired very quickly. He is NOT fat, he takes a high dose of steroids to keep his muscles working. My motability car is not free and I don't get "loads of benefits".

bialystockandbloom Tue 11-Jun-13 12:09:54

Ok, thanks.

Presumably you don't just want the glaring/what are you f-ing staring at kind of tips, no? wink

As for tips for the public on how to approach us, here's my list:

1. staring is just about the worst thing you can do

2. if you're really interested in my child I'm happy to talk to you and tell you all about him

3. if I look like I'm struggling perhaps I am, and could do with a simple "can I help at all?"

4. I don't actually always have the answers, or know why my ds is doing something, or what to do about it, any more than you do

5. the best thing you can do is be interested in my child as you would be any other child though of course other children aren't as interesting, clever, funny, cool, kind, and downright fabulous as mine

hazeyjane Tue 11-Jun-13 12:19:44

I would like some mention of the fact that many people with disabilities do not have a diagnosis, people can have multiple, complex and severe disabilities and years worth of investigations and still have no diagnosis.

Even though most people do not realise it,having an undiagnosed genetic condition is actually quite common.It is thought that about half of children with learning disabilites and in approximately 60% of children with multiple congenital problems do not have a definitive diagnosis to explain the cause of their difficulties.

As undiagnosed children a common diagnosis is a coverall, global developmental delay - this does not mean that a child will 'grow out of it'.

I think the campaign is a great idea.

My child has an undiagnosed genetic condition, with multiple health problems, and no speech - he laughs a lot, and loves firemen, helicopters and people falling over.

hazeyjane Tue 11-Jun-13 12:20:54

By the way, the bold bit is from SWAN UK, who support families with undiagnosed children ( Syndromes Without A Name )

Okay. If a member of the public stops and stares when you are struggling, said loudly 'oh thank you SO much for stopping to help. Here, hold the bag/other child/basket/oxygen tank/trolly'.

If you have been begging for help for several years to no avail, make business cards with you social workers name on and telephone number with the message 'do I look like I need help? Perhaps they'll listen to you!', to hand out to the crowd during a challenging situation.

Thereonthestair Tue 11-Jun-13 13:26:49

The main myth I would like busted is that the NHS provides the therapy needed.

It does not. I have a child with cp who cannot get hydrotherapy, as my county doesn't provide it, who cannot get enough physio due to staff shortages, who cannot get splints for months after he has outgrown the last ones (again staff shortages) lycra for 3 months ditto staff shortages.

The next myth is that even if you get DLA it can fund the gaps which exist. I spend 2-3 times as much on my ds condition as I get in DLA, and even then I struggle as it is very hard to provide private therapy when the NHS aren't funding therapists/

I would also like to emphasise that the postcode lottery is alive and well in most medical and educational provision, and what you get does depend on when you live.

I would also like to bust the myth that working with a disabled child is easy. I frequently have appointments on different days of the week. There are very few jobs that allow that degree of flexibility. Which is why carers allowance is extremely necessary and good value for money.

hazeyjane Tue 11-Jun-13 13:40:24

'They all get there in the end'

'My father's uncle's parakeet didn't talk until he was 4 and he now works a diplomat for the foreign service and went to Oxford'

Etc

'We're all on the spectrum somewhere'

No we're not!

Smudge45 Tue 11-Jun-13 14:06:10

On son with ADHD

He can't have ADHD, he's not naughty/aggressive/violent

All boys are like that (so why is mine singled out by teachers as being exceptionally distracted/lacking in concentration)

Rumours Tue 11-Jun-13 14:26:17

Thanks for this thanks

Myth: 'there was no such thing as autism in my day'
Fact: yes there was! OK it wasn't called autism back then (probably childhood psychosis (sp?)), but it was still there.

Myth: 'autism is on the increase'
Fact: diagnosis and awareness is a lot better now, so more people will be getting the correct diagnosis, so it will seem like its increasing.

I'd like my DS1's teachers to take heed of the following (and so would he):

Just because he has produced very little or very poor quality work, it does not mean that he was not trying. He may have been trying twice as hard as anyone else in the class.

Telling him that he needs to be more organised will not actually make him more organised.

It might be a good idea to consider what the other children around him and you (as the teacher) are doing, rather than pre-determining that the problem must be him.

Just because he struggles in your classroom or the school playground doesn't mean that he has 'no social skills'; he does have social skills and demonstrates these at home and with his friends, but finds it hard to cope at school.

Professionals are not always the experts.

Ineedmorepatience Tue 11-Jun-13 15:08:25

A great campaign MNHQ I just want to expand on what arbitrary said.

Professionals are not always the experts... Parents are likely to be experts on their children and should therefore be listened to, have their thoughts taken account of and not be talked to as if they are neurotic or suffering from munchausens by proxy (or whatever it is called now).

I also agree with starlight we are not all on the spectrum. Many of us have little quirks but these do not impact on our lives every single day!!

CatsInCustard Tue 11-Jun-13 17:01:25

When introduced to an AS child, sticking your face in theirs is not making them feel comfortable or inclined to speak to you. Also they are not stupid, speaking to them as if they are a young naughty toddler is not right. They do understand what is being said

chocnomore Tue 11-Jun-13 18:12:36

... and not all children with developmental delays/disorders will not get there in the end (some will but a lot don't).
and no, I don't want to hear the story how somebody's postman's second cousin's son did not say a word until 5 and is no a brain surgeon.

and thank you MNHQ for starting this campaign!

To all public sector and NHS professionals. It is illegal to do assessments of children against the parents knowledge, and share data and information without consent in order to build a case against them for tribunal.

HotheadPaisan Wed 12-Jun-13 07:25:03

"'We're all on the spectrum somewhere'

No we're not!"

Absolutely agree with this.

cornypedicure Wed 12-Jun-13 08:09:57

I also agree with 'They all get there in the end'

Get where?

Where do the children with sn who are excluded from school get to?

Where do the children who can't take GCSE's because of their SN get to?

Where do the children who can't go to school get to?

MNBlackpoolandFylde Wed 12-Jun-13 09:27:24

No my child is not just being precious because she has sensory issues and cannot cope with the noise and hustle and bustle of the playground and it makes her cover her ears and cry because it physically hurts her ears and sometimes makes her shake. No she cannot just get over it because she will have to go in the work place in ten years time.

Yes Blackpool, telling her that she needs to get over because it X Will Be Expected at Secondary School, or when it comes to Exam Time, orAat University, or In The Workplace is many years, or whatever else it is that the particular teacher has decided will scare parents that day. If it were just a case of telling them to 'stop being silly' or to 'be organised', the parents would have done this years ago and saved themselves and their child a lot of trouble.

As an extension to the professionals are not the only experts point, I will add that it is often a mistake to talk absolute rubbish about things you know bugger all about to parents because sometimes it just happens that they do know about what you're talking about.

For example, it's generally a bad idea for secondary school form/PE teachers to tell university lecturers about how universities deal with student disabilities and then refuse to accept that they don't know what you're talking about when they inform you about what actually happens. Just because you had to take written notes when you were at university back in the day doesn't mean that students still do it the same way, nor does it mean that there aren't adjustments in place to support students who can't do it themselves. Although, I'd've thought that even people who've never had anything to do with universities could figure out that the statement 'he'll never be a scientist if he doesn't write things down legibly' is total shit.

I agree with the person up thread who would like the myth busted that the sate (NHS and local authority) provides the help and therapy that is needed, or even knows or understands what is needed. The so-called developmental paediatrician who diagnosed my DS had never even heard of the only evidence-based treatment that exists for his condition. We have spent the past arranging and paying for this treatment ourselves with no help, financial support, advice or anything else, from anyone with this.

And in terms of advice for people in general about what NOT to say to a parent with a SN child (echoing also some other's points):

Oh how terrible for you!
I'm so sorry for you.
But he looks normal.
What a terrible pity, he is so beautiful/cute etc.
They all get there in the end (where do they get?).
Einstein
Holland
Oh don't worry when he does start talking you won't be able to shut him up, ha ha ha

And my personal worst one:

"You just need to talk to him, then he will learn to talk!
Oh me, I'm really crazy (said with a shake of the hair to show how "crazy" and amazing they are), I just talked to my baby all the time, I didn't care what people thought (ha ha ha), and so he learned to talk really early!"

BTW I think this is a wonderful idea for a campaign and would like to be involved in any way I can...

Parents are the experts on their child. Professionals are simply people who are paid to do a job, who may or may not be experts.

devilinside Wed 12-Jun-13 13:34:12

As an aspie mum with an ASD son: I'd like to say, not all of us are rigid and routine driven, not all of us are good at maths and some of us have great imaginations

autumnsmum Wed 12-Jun-13 13:56:40

Brilliant idea for a campaign . Firstly I think people need to realise that having a child with a disability does not automatically entitle you to a free car and driving lessons! I am still hauling two children with asd on and off London buses , also I know this has been mentioned before on this thread but girls can have autism and finally could people please try and be a bit sensitive when telling me about children far younger than mine who sleep far better than dd and who can speak at nine months!

BlackeyedSusan Wed 12-Jun-13 14:08:35

she does not look deaf? what the hell do they expect deaf child/adult to look like? did you respond and you don't look stupid either, but looks can be deceiving?

ok back to reading though

Even the most severe kids with obvious disabilities slip through the net. It is much easier to leave those to get on with it otherwise they then start to cost too much. This can not only isolate the family and child from school and social settings but most of virtual and real life. It segregates the disability community as well as the disability/NT community. Life can be so dire and secluded when nothing is going right and there is no support from anywhere and you are left to bring up your family. Sometimes all I need is a quick phone call for things to seem brighter and still nothing. It all depends on the size of the heart you are targeting, whether you have reached them and they are able to listen to go give. Yes there are stories linked to why I have said what I have, too many to mention.

Myth: Children with disabilities require thousands of pounds of 'support'.

Fact: Well targeted support from appropriate trained teaching staff often require as little as a pencil and paper or a couple of classroom adjustments. It too 2 TERMS to move my ds' coat peg to the end of the row, resulting in daily punishment for not hanging his coat up sensible due to his sensory issues.

Myth: A child who has lots of outside agencies involved with their family is getting lots of support.

Fact: The family are getting lots of meetings and paperwork. This often has little impact on outcomes and becomes time-consuming, time-delaying and confusing.

Myth: TA's create dependence.

Fact: Inadequately trained or inappropriately recruited TAs cause dependence.

Myth: Challenging behaviour is when a child is aggressive

Fact: Challenging behaviour is also when a child is passive and withdrawn. He might not cause problems in the classroom, but his behaviour is causing HIM problems in his ability to access his education.

Myth: Teachers, SEN professionals, Advisory teachers, TAs only want what is best for your child.

Fact: Many do care about your child, but your child is NEVER their only agenda and their agenda's often compete. As a parent you are almost always the ONLY person who's agenda is solely your child.

If your child is violent toward siblings, one of the interventions threatened offered, should you continue to request support, is placement of your NT children into Foster Care for their safety.

Ok then, this is my child, or one of them.......

DS at birth was diagnosed with a serious heart condition, one that will never be repaired, just made the best job of. He was then diagnosed with Down syndrome. A few year down the road diagnosed with SPD. To later be diagnosed with autism and PDA.
This combination has always made him quite difficult and worrying. He is very aggressive and easily set off. Then you have the worrying of his anxiety and not having to be stressed due to his heart and the fact he can't brush his teeth and at risk of endocarditis which is fatal. He is also prone to being overweight and thyroid issues but also has mobility problems. Just a snippet of the worry.
He is stuck at home 24/7 as he is unable to access the real world. He is also 24/7 supervision, do not expect to be able to do dishes or anything else while you are looking after him. So my housework starts when DH comes in from work. Apart from him I see no other adults, talk to no one and get to do nothing unless its online.
When we were able to access outside I was often asked should he be out in the community. Even the profs have threatened institutions which possibly have come on a long way from what we think but is this right when said profs are doing nothing to help DS.

chocnomore Wed 12-Jun-13 14:49:30

and yes yes to the myth busting that our children get help and support from the NHS, LA etc.

All that's needed is honesty, right across the board from dealing with profs to public.

SallyBear Wed 12-Jun-13 14:57:36

My child is deaf not stupid. Please remember that when you are patronising speaking to her.

Inclusion doesn't only mean physical inclusion.
Yes my ds might be sitting on the carpet with everyone else, but if he doesn't know why and there is no-one there trained to help him understand the purpose of being there, then he isn't included, whatever he 'looks' like.

The trouble is there's less common sense around, less empathy, sympathy, compassion. People seem to be too self centred all of which means people are not listening, caring, taking stuff on board.

Where I used to live, next door the couple, he was a drug dealer and she was a shoplifter, the police were forever banging down the doors, there was always fights and rowdiness, yet she would always knock and ask can she do anything with me having the bairn.
We moved to a more respectable area, one day taking DD to school in the snow with DS in his buggy loaded with cold, the neighbours grandaughter asked could they take my DD in the car, same school, space in the car, the answer no. By the time I got to school DS was blue lighted to hospital, yet again for DD to worry about when if they took time out to get to know the circumstances things may have been different.

Just something to consider.

zzzzz Wed 12-Jun-13 16:24:36

Thank you MNHQ

MN is already a haven, and now you are trying to help

thanks I like the plan so far

sickofsocalledexperts Wed 12-Jun-13 16:38:27

I had a gorgeous example of gawping last night. Had to pick up my teenage daughter from a school trip, alongside 100 other parents. Took my autistic LD little boy with me, and he does his usual bouncing up and down, odd little movements. Vast swathes of these supposedly educated other parents just nakedly gawped at us.

Where are their manners, quite apart from any sensitivity or empathy? Brought up in a barn, or has society just dispensed with that "don't stare" rule!?

I bet there would be a riot if people had all been gawping for race reasons, not disability.

My usual technique, if I catch the eye of a gawper, is to do a half-smile, raised-eyebrow sort of "can I help you?" look, then smother my boy in kisses to show how proud I am of him. Amazing how quickly people look away when caught out.

Care, don't stare!

SallyBear Wed 12-Jun-13 18:15:55

"Care, don't stare" indeed Sickof. DD's best friend told off the manager in McDonalds last week when the girls were out shopping, for staring. He apologised and she told him to "think next time!" I was very proud of her.

kungfupannda Wed 12-Jun-13 18:57:52

I'd like to see a reminder that children with SN will soon become adults with SN, and that they don't stop needing support, or deserving respect and empathy, just because they're not cute little kiddiewinks any more. I take the point about keeping the focus, but I don't see why that couldn't be worked in somewhere.

infamouspoo Wed 12-Jun-13 19:30:37

My child may not be able to move or speak but he's not deaf and he knows when you stare or talk about him and he understands every word spoken. He also knows when he's left out of all playdates and parties.
Why dont parents of NT kids include SN kids? They come to his parties but never invite back.

r3dh3d Wed 12-Jun-13 21:05:45

I think the single most important and damaging myth out there is:

"if something happens to you or your kids, you will be OK. Because this is a civilised country, and if you are "properly" disabled, you will be looked after."

It's so far from the truth that it's laughable. If that is the definition of a civilised country, we are not a civilised country. When people get talking to me about my child and the support she needs and the support she doesn't get, they are always, pretty much without exception, astonished to hear the truth. They seem to think that they have voted to spend a chunk of their tax money on supporting the truly defenceless and surely that's where the money is going?

But it isn't. The overwhelming majority of what people see as our enormous "welfare" bill is spent on the elderly*. After that it's housing benefit. And though things have got worse with the current cuts, tbh there has never been a fraction of the money needed made available. When you see stories in the newspapers about parents who kill themselves or their disabled children because they are driven to despair, that's not an inevitable tragedy. It's a budget decision. And it's not an isolated case. It's just someone a little bit more desperate than huge numbers of families who are exhausted by the constant fight to get the support they need to hold their family together. The support they are legally entitled to. The support you thought you paid your taxes for. The support they don't get.

* which isn't necessarily a bad thing, it's just a thing. We have a huge elderly population and no plan for looking after them which means the system is swamped.

I would like people to understand what it is like to fight for your child's legal entitlement.

For us it has meant 4 moves in 3 years. DS has been in 5 schools and he is only 6 years old. Removed from each of them for neglect or abuse though they were saying they could meeting his needs and fabricating evidence.

2 tribunals plus thousands of pounds in independent assessments and expert witness fees meant we had to sell our house (lucky we had a house to sell, many don't).

Child Protection defences. Files closed rapidly but stressful to go through and both times instigated to coincide with key tribunal process dates.

Thousands of pounds of our own money to pay for therapy that was indicated but not provided. Local Authorities not following national guidelines on the basis that they were only guidelines and not law.

Giving up my career not to care for my child, but to do all the admin and paperwork necessary to secure him safe environment to be educated.

Defending various allegations and correcting reams and reams of internal agency communications designed to paint an incorrect and negative picture of our family.

Having our parenting repeatedly under scrutiny.

I am not unique. The MNSN board is full of people who have gone through the same.

Just marking my place, but thank you.

zzzzz Thu 13-Jun-13 04:59:26

I'd like people to understand what really happens when your child is different.

That it takes years for professionals to agree that there really is a problem for some people and that these are not mild cases but children years behind their friends,

That this happens even if you take your child repeatedly to whoever you can think of.

That the "help" consists of units you can't get into, photocopies of how to parent/make picture cards, and yet more assessment.

That I received more Information on what to do for a week in centre parcs for a weekend break than I have from the NHS for my children.

That there are no schools for some children.

That you can be sent home from hospital with a child that could have a life threatening seizure and must be watched 24/7 and since the NHS no longer fund monitors you will be refered on to a charity WITH A NINE MONTH WAITING LIST to get funding. Because "parents stay awake 24/7" for nine months is the plan.

I want people to know that I AM brave, and patient and I love my children, but I am also exhausted and lonely and bemused at the twilight world I have entered.

I want them to know that there are people that are really awful. Who don't think we should be near them and a few glorious individuals who make your hearts soar.

I'd like how we treat our most vulnerable to be a source of national pride, because at the moment we should be very ashamed.

And 8 years ago before I had my beautiful boy I hadn't a clue. I assumed that we treated people with disabilities with kindness and compassion. I imagined we were rather exemplary and that everything was catered for. I was wrong

cory Thu 13-Jun-13 08:52:12

MYTH. There is no such thing as disability, only failures of society to meet different needs.

TRUTH. SN are all different.

Some SN cause pain or high anxiety levels; those sensations are inherently unpleasant whatever society does.

MYTH. Wishing your child's SN wasn't there means you are rejecting the person he is.

TRUTH. SN are all different.

Some are an integral part of personality, others are more like a permanent illness. If your child is in chronic pain, you are bloody well allowed to wish they weren't. If your child yearns to do something the SN will not allow, then they have a right to be frustrated and angry if that is how they happen to feel about it.

cory Thu 13-Jun-13 08:54:01

Of course I don't mean to say that it doesn't matter how society treats someone with chronic pain. Only that even under the very best circumstances it is still crap.

bookcase Thu 13-Jun-13 09:27:02

People seem to think all wheelchair users are paralysed or can't walk at all. My daughter can't walk due to her poor muscle tone but can move her legs and kick out - this seems to shock people and one woman actually asked me why did I think it was a good idea to strap her into a wheelchair when she can obviously walk! Also some of the kids with her condition can walk short distances but need wheelchairs for longer distance - the stares they get!

Gunznroses Thu 13-Jun-13 09:32:18

To wish people would PLEASE stop referring to Tourettes for added comic effect in mindless trivial conversations (someone has just done it again on another thread about "Cupping CO Penis")

Reality : Tourettes is heartbreaking.

Reading all of your post gave me goosebumps zzzz

Particularly think this statement needs to be highlighted

"I'd like how we treat our most vulnerable to be a source of national pride, because at the moment we should be very ashamed."

RowanMumsnet (MNHQ) Thu 13-Jun-13 13:13:21

Thanks again for all of these

And thanks also to those of you who've sent in photos - they're gorgeous. We'd love to have some more.

To save your scrolling fingers, here's the relevant bit from the OP:

'To go with the 'This Is My Child' theme, we're asking for MNers who are parents of or carers for children with additional needs to send in pictures of their child, which we will use for a photo gallery on the site. These can be completely anonymous and needn't be linked to your RL or MN name if you'd rather not; the idea is to personalise the issue for members of the public. If you'd be up for doing this, do please send in a digital photo (a roughly 500-pixel-sized image in a jpg, gif or png format) along with a caption (which can be pretty much anything you please: 'This is my child. He's eight and he loves Star Wars' - that sort of thing) to contactus@mumsnet.com, with the subject heading 'This Is My Child, FAO Campaigns Team'.'

Thanks all flowers

Tootsandblanket Thu 13-Jun-13 13:17:36

I agree with Taps, zzzz's sentence is a lovely way to summarise.

I'm happy to see this campaign on its way, but these posts are making me feel so sad and worried for DD and how we will cope when we start venturing out of our safe haven home. It's already been suggested she may be too complex for the boroughs only SN pre school and the WCS are ignoring my attempts to get a buggy that works for both of us. But I am going off subject here.
Good luck MN with this campaign, I will be watching and following carefully.

bialystockandbloom Thu 13-Jun-13 13:31:53

Very well said zzzz <applauds>

r3dh3d Thu 13-Jun-13 16:58:50

When you say 500 pixels, do you mean actually 500 pixels? Or 500 x 500 pixels? Because 500 pixels is teeny-tiny.

HotheadPaisan Thu 13-Jun-13 17:23:44

I really don't know what people think when they meet DS1 or see the support he gets at school. It would be interesting to open this up on the main board and see if there can be an honest conversation about what people think and match that to reality.

Our support has been good, it has still all taken too long and we've been utterly desperate at times but compared to many we get a lot of support. DP and I still rarely get time together though and we're nowhere near an uninterrupted night's sleep after seven years.

I do know DS1 wouldn't be in school at all without the support and then his life chances really would be poor.

I think that's something I'd emphasise - what support there is is there because outcomes for DC with SEND are statistically so poor. I know all kids could do with specific and additional support in order to achieve their potential, but you have no idea just how far behind DS1 is and the problems he has with just being there and participating at all let alone learning anything. And you really don't know just how stressful home-life has been.

Don't judge and don't begrudge would be my message, you would not have wanted the last seven years for your DC and the worry and uncertain future that's inevitable with neurological disorders and impairments in return for 1-2-1 support at school.

RowanMumsnet (MNHQ) Thu 13-Jun-13 17:45:02

r3dh3d

When you say 500 pixels, do you mean actually 500 pixels? Or 500 x 500 pixels? Because 500 pixels is teeny-tiny.

Um. Let me ask a grown up NancyMumsnet

I sent a photo, but I have no idea what size it was, because I copied it from FB onto my ipad then sent it and it didn't tell me a size... Sorry.

MumuDeLulu Thu 13-Jun-13 19:11:46

Marking my place

MumuDeLulu Thu 13-Jun-13 19:36:55

And thanks heartfelt thanks to MNHQ.
Mixing with 'normal' families when dealing with the nightmare that is the SN support system is a very strange experience, the nearest parallel I've found is ex-Forces staff returning to civilian Britain. But they've left the battlefield, physically if not mentally anyway, and I suspect most people 'expect' them to be a bit scarred.

You usually recognise other carers somehow. Perhaps it's the pasted-on smile on the exhausted face, or the grimly determined clumping of their unpolished shoes.

RowanMumsnet (MNHQ) Fri 14-Jun-13 09:26:41

TapselteerieO

I sent a photo, but I have no idea what size it was, because I copied it from FB onto my ipad then sent it and it didn't tell me a size... Sorry.

I think we have it Tapsel - it's lovely, thank you!

I can do the photo thing, but not the pixel thing. I have no idea what that means sorry.

RowanMumsnet (MNHQ) Fri 14-Jun-13 09:42:22

r3dh3d

When you say 500 pixels, do you mean actually 500 pixels? Or 500 x 500 pixels? Because 500 pixels is teeny-tiny.

Right, NancyMumsnet says:

Don't worry too much about exact dimensions. If a picture is 500x600, I don't want people to think 'oh no!

500x500 is a good sort of size for MN but that makes it a perfect square which most photos aren't, which is fine.

So if you can aim at roughly 500x500, or 600x400 (or 400x600 if it's portrait!) - or something in that region - that would be grand.

And if you're not sure what size it is, please do send it in anyway - we might be able to resize it here.

RowanMumsnet (MNHQ) Fri 14-Jun-13 09:43:01

StarlightMcKenzie

I can do the photo thing, but not the pixel thing. I have no idea what that means sorry.

Please do Starlight - if you're not sure, we'd love you to send it anyway.

buildingmycorestrength Fri 14-Jun-13 10:45:51

Brilliant campaign. Thank you.

desertgirl Fri 14-Jun-13 13:26:43

Just a thought, if you are asking people not to say things lots of people do say, it might be a good idea to offer some alternatives as people possibly just don't know what on earth to say? Eg if someone tells you her child has X, is it ok to ask what that means for the child or do you get fed up of explaining? Is it ok just to say 'oh really' and move the conversation on, to avoid saying the wrong thing?

FobblyWoof Fri 14-Jun-13 13:36:04

I have nothing constructive to add to the campaign other than my support (my brother has a visual disability and is grown up) but wanted to say what a fantastic and well thought out campaign.

MNHQ. Just sent a picture. It's the mountain one.

If I told someone of ds' condition I would have considered it necessary for some reason for the person I told to have that information. I wouldn't necessarily want to go into the ins and outs though so until I knew you better and there was a relaxed opportunity to discuss I'd quite like 'Oh, I'm afraid I don't know very much about that. You might have to tell me what to do to help'.

HotheadPaisan Fri 14-Jun-13 14:14:25

I tell you what I always want to hear but rarely do desertgirl: 'How can I help?' 'What do you need?'. Failing that a simple 'It must be difficult' is good to hear too.

ShadeofViolet Fri 14-Jun-13 15:21:08

Great campaign - have sent a photo, its a school one so hope its okay.

TheNinjaGooseIsOnAMission Fri 14-Jun-13 15:25:47

I like 'care don't stare', looking when you see something/someone you wouldn't usually is fine. Falling over your friend because you can't take your eyes off the baby with the bottle bottom glasses (which by the way are real) will let you know how it feels to be stared and laughed at.

if your small child is asking you questions, I'd rather you asked me or got them to say hello to my child than shush and drag them away.

my dd3 has a visual impairment, I'd rather you didn't say to me 'but she doesn't look blind', I can promise you she is! If you want to say something then 'she moves around really well' is much better and will put a smile on my face smile

myth, hearing aids give you perfect hearing.
truth, they don't, modern digital hearing aids are great but they only aim to give you access to speech which depending on your hearing loss may or may not be possible. Hearing a single voice in a crowd or any other background noise is tricky as every sound is amplified so facing someone and allowing them to lipread as well will give them a much better chance of understanding you.

Tiggles Fri 14-Jun-13 15:49:48

Myth: My child does all those things too, it's perfectly normal behaviour (in relation to ADHD/autism etc) - no they don't or they would have a diagnosis too.

zzzzz Fri 14-Jun-13 16:19:20

By the time this campaign is finished no one will be worrying about what to say. grin

My 2 pence is please please be aware that my child's siblings are there and have their own understanding of things. That understanding doesn't include anything being wrong with their brother. angry

That's why I sent in a picture of my ds AND dd together.

I sent an idea for a caption but if MNHQ don't like it a simple:

'These are my children. One of them has needs severe enough to receive higher rate disability allowance.'

As there is no way from the photo you could tell which one it was.

inappropriatelyemployed Fri 14-Jun-13 18:16:29

I'd like people to know that my child is not a 'SEN child'. He is a bright young boy, who finds socialising with children very tough.

In our overly socially world, this is considered a disability. But that is ok because it means he has RIGHTS.

Let's start having our children treated through the prism of rights not needs. Needs depends on what YOU think he needs - his rights are not yours to take.

Let's start talking of educational rights not needs.

marjproops Fri 14-Jun-13 18:16:44

Another supporter here and agree with what everyone else has said.

you'd think in this day and age people wuld be better educated/informed but still there are times DC is looked at like a victorian circus freak.

oh and just cos she has legs doesnt mean her legs are robust and perfect.

and yes, fighting like mad for mobility/disability help, especially a blue badge and financial help with the absolutly needed car.

so good campaign and we're all behind you, HQ.

marjproops Fri 14-Jun-13 18:18:14

and agree with starlight mine gets middle rate but needs higher rate too, and from a photo you wouldnt be able to tell either.

lionheart Fri 14-Jun-13 19:05:28

Fantastic idea, MN. flowers

I also like the idea of of posting positive things to say/do.

Myth: Children with additional leads are much more likely to bully other children.

Myth: It doesn't matter how long it takes to get a diagnosis because there is no cure.

marjproops Fri 14-Jun-13 19:32:48

BTW I hope this campaign goes to number 10 too.

Bluebirdonmyshoulder Fri 14-Jun-13 20:08:39

Agree 100% with inappropriatelyemployed over rights, not needs.

Also I thought of something that has been annoying me for AGES.

So many people, when I've told them about bluechick's dx, have said, "Sorry to hear that, blah blah, but she's absolutely gorgeous!"

YES I KNOW SHE'S GORGEOUS. SHE'S THE MOST BEAUTIFUL THING I'VE EVER SEEN. I'm not worried about her gorgeousness, I'm worried about her cognitive function and whether she'll ever be able to walk, talk, go to the loo herself, function independently and I'm bloody worried over what happens when I'm no longer here to look after her.

So don't tell me stupidly obvious things please. Because believe me, I'm thinking about much more than whether or not she's cute.

FancyPuffin Fri 14-Jun-13 20:32:08

At a point where you are introducing this campaign MNHQ I am very angry and disappointed at the response given on the S and B thread (not repeating it here its fucking horrid)

Myth: A child with SN is more likely to bully or be aggressive

Fact: A child with SN is more likely to be bullied or suffer aggression.

And sadly we are not talking just from other children.

MissBetseyTrotwood Fri 14-Jun-13 20:57:52

Myth: If you speak loudly to my child with hearing impairment he'll be able to hear you.

Myth: All children with hearing impairment can be helped by wearing hearing aids.

Myth: Children who use hearing aids have worse hearing than those with a hearing impairment who don't use them.

Myth: Speech and Language Therapy is only for children who can't speak clearly.

My DS's been laughed at in the street for the way he walks. I've been asked if he's drunk, if he really hates school as he's taking so long to get there, and if I've seen a doctor as his legs are so thin. My response, deadpan, is simply 'He is disabled'. Not the most creative or pleasant I know but I find the 'disabled' word packs a harder punch than 'he has special needs'.

I have been offered prayer 'for his healing', to which I replied 'no thanks, he's not sick.' (Then went and cried.)

The equipment I fought for him to use in his classroom has had a direct impact on the achievement of ALL the children in his class, something his teacher thanks me for each parents' meeting.

I'll be back with more. smile

MissBetseyTrotwood Fri 14-Jun-13 21:04:56

AND to the school health services, school nurse, dentist etc. Check children's records, please. Before you give them an eye test with instructions they can't understand, like you did with my DS.

We've ended up with two referrals (on top of all our other appointments) since the start of Reception because the school nurse hadn't bothered to check his school record. She gave him a sight test with letters (he couldn't to phonic sounds at the time) that he failed, obviously. Cue pointless referral, which terrified me as sight loss is a potential eventuality for him. I didn't even know who'd referred him until we got to the appointment. angry

hazeyjane Fri 14-Jun-13 21:09:52

Myth - that people who complain about words and jokes that mock, insult and demean people with sn are just the professional offended.

MissBetseyTrotwood Fri 14-Jun-13 21:11:59

Hear hear hazeyjane .

DanteValentine Fri 14-Jun-13 21:12:21

Myth: You must have done something for your DC to act the way he/she does.

My daughter is currently statemented with behavioural issues and I would love to see the myth that it's somehow my fault she's that way be busted.

It's not my fault. I have, and am, doing everything in my power to help her, to mitigate the effects of her bad behaviour, but she will never be considered within normal behavioural boundaries.

Thank you MN for getting this campaign started!

Bluebirdonmyshoulder Fri 14-Jun-13 21:12:24

<gives hazey a standing ovation>

Bluebirdonmyshoulder Fri 14-Jun-13 21:16:32

FancyPuffin what's the horrid thread? I assumed you meant Style and Beauty but can't see anything.

hazeyjane Fri 14-Jun-13 21:17:07

blush

might have been better if I had said professionally offended!

MissBetseyTrotwood Fri 14-Jun-13 21:17:16

It's just been deleted.

amistillsexy Fri 14-Jun-13 21:18:35

Just because he occasionally does things that show he has considered someone else's feelings, doesn't mean that the diagnosis is wrong, and he 'doesn't have ASD'. It means that the hours and hours spent over the years teaching him to consider others' feelings might just be paying off, and he has been very well taught!

Bluebirdonmyshoulder Fri 14-Jun-13 21:21:10

Was it in Style and Beauty? Might go and start a thread there myself.

Lara2 Fri 14-Jun-13 21:43:20

That mainstream school (even with support) isn't always the best for SEN children and they certainly shouldn't have to go through a process of failure before something is done that really helps them.
That CAMHS will give you an appointment and see you and give you a diagnosis. In my area they reject at least 50% of all referrals without even seeing a child. They are also refusing to diagnose any autistic spectrum disorders - they say it's the responsibility of the paediatricians, who say it's the responsibility of CAMHS and in the meantime nothing happens!

autumnsmum Sat 15-Jun-13 07:56:17

Agree with Lara2 mainstream isn't always the best even with help .my dp and I have made a conscious decision to send dd to ss

zzzzz Sat 15-Jun-13 08:18:18

Yes the concept that ms education is "the prize" to be strived for and clung to regardless of progress or suitability is a bit hmm .

Ms education is fine for lots and lots of children, but it's worth understanding that it is the cheapest option to sit a child with a TA in the back of a classroom or in the corridor.

HotheadPaisan Sat 15-Jun-13 08:40:31

True but DS1 is in MS with 25 hours 1-2-1 and 90% of the time he's outside of the class by choice and it's still the best placement for him at this stage.

And:

Often a child has had to fight for a special school place not because they couldn't be supported in mainstream, but because they wouldn't be.

Frustratedartist Sat 15-Jun-13 08:56:07

On Tourettes- I do agree with Gunsnroses- hope I've got that right - but my two DCs with Tourettes do swear & I would like to emphasise the pain and embarrassment this causes them. It's involuntary. Not like normal people swearing.
It's such a complex illness & when the children look normal out with the home people just don't understand how badly they're actually affected by it. Not even A&E staff. My daughter suppressed her tics for 3 hours in a row at Casualty once & even the nurses there thought I was an over anxious mother - because they couldn't see the effort she was putting in to looking normal

So just take my word for it! Don't tell me they don't look too badly affected. Most people will never see the reality of my home life and sometimes it's miserable because of this illness. There isn't support. But I just take it day by day and hour by hour.

HotheadPaisan Sat 15-Jun-13 09:28:22

Just re-reading the myths in the OP, I think they capture the main problems quite well.

Am trying to think about the first part of the OP regarding the impact on family life, it's just huge but I don't know how to get that across - the appointments, the research, the paperwork, the worry, dealing with the day to day, the being called into school all the time, the time I've needed off work, never going out with DP, no nights off together ever, not being able to go to social events, becoming isolated, how hard it is to ask for help only for it not to exist, the interrupted sleep for seven years, people really just not understanding neurological impairments and difference and how things can change from hour to hour for no obvious reason, how we have to protect DS1 from becoming overwhelmed and developing long-term MH problems as well as push him to get out of the house at all etc etc

And we have had support and got good information on what was going on at an early age. It is utterly exhausting and overwhelming at times and friends and family see none of this. I've started to email them reports now and then and you see and feel the shock as they read them and respond, yep, it really is this bad. Although we're entering a little up phase at the moment which is great, hurrah for the wonder of modern medication. And there's another thing, whoever starts parenting expecting to be medicating their child at 7, these are very hard decisions and there is no continuity of support. We've seen the psych twice and now he's moved on, as has the paediatrician I've only managed to see twice in two years too.

People think the support is out there and it just isn't and like I said, we've fared better than most.

Dawndonna Sat 15-Jun-13 10:48:24

Hi,
Dawndonna's dd here.
I would really appreciate somebody busting the myth of having a physical disability means that the person concerned must be intellectually challenged in some way, too. I frequently have people a) asking my mother questions about me, b)ignoring me, c) being incredibly surprised when I challenge their perceptions which in turn results in them questioning me about my physical disability rather than the subject in hand.

Dawndonna Sat 15-Jun-13 11:02:03

We're not being difficult, we're scared.

zzzzz Sat 15-Jun-13 11:07:41

I agree dawndonnasdd that must be very annoying.

I would like to from our perspective (neurological impairments) that there isn't a hierarchy of disability where it is insulting to be mistaken for LD if you are physically disabled. It's that it's insulting not to have the disability you actually have differentiated for. My ds would like to answer questions himself too, but people will have to modify their language to help him do that. He too is less interested in discussing the ins and outs of dx with every Tom Dick or Harry.

Yes. Sadly Dawndonna's dd I have seen that myself. Talking over the person in the wheelchair as if they aren't there. I've seen recently a stupid stupid comment 'Does she understand what I am saying?'

My DH butted in (though we didn't know any of the party and dh is usually very quiet) and said 'why don't you try talking to her and see?'.

The trouble is the poor woman in the wheelchair looked even more upset and embarrassed, not relieved.

My all time favourite 2 answers to the alarmingly regular question about my ds' autism: 'Does he have any special talents?'

Are:

a) <whispering> Yes, he sees thick people!

and

b) Yes, he can fly.

PolterGoose Sat 15-Jun-13 13:14:46

Yep, Star, people making ridiculous assumptions based on their limited knowledge is common. I've had a few times "you're so lucky he's so clever", Erm, right, so that negates the fact I'm still wiping his arse at 10, still holding his hand when out, have to do therapy at home, have dealt with a child expressing suicidal thoughts since the age of 6...

Geneticsbunny Sat 15-Jun-13 13:52:09

(long time lurker) I wish people would just see my little boy for who he is and not what he has.

Dawndonna Sat 15-Jun-13 13:55:18

Invalid (disabled) does not mean invalid (not valid).

MumuDeLulu Sat 15-Jun-13 17:51:45

Your inability to understand my dc's SEN doesn't mean she's fine. It just means you're ignorant, arrogant, unprofessional and in the wrong.

MumuDeLulu Sat 15-Jun-13 17:52:43

(Btw, that's for caring carrots. Ignorant folk who bother to listen are fine)

marjproops Sat 15-Jun-13 18:15:25

starlight LOVE those answers, think Ill use them next time!!! grin.

myth- (if it hasnt been said already_ were all neurotic parents. we're pests and a drain on 'services' time.

fact- WE have to speak up for our children when they cant , even though it should be obvious they have a disabilty. WE have to fight for them and make ourselves heard.

If that makes me neurotic, so be it.

infamouspoo Sat 15-Jun-13 18:45:47

'Myth - that people who complain about words and jokes that mock, insult and demean people with sn are just the professional offended.'

I'd like that on a placard to smack people with.

FanjoForTheMammaries Sat 15-Jun-13 19:56:39

Well..

FanjoForTheMammaries Sat 15-Jun-13 19:58:34

This campaign is much needed..given that someone on another thread just said that I shouldn't take my DD to cafes unless i am homeless and have no choice, as if she disturbs anyone I am "gleefully expecting them to share in my misfortune".

And there was NO outrage at that post.

Very sad indeed IMO.

FanjoForTheMammaries Sat 15-Jun-13 20:04:05

In fact it's just a total rerun of THE hideous panto thread again.

A step too for for me I'm afraid.

Adieu smile

hazeyjane Sat 15-Jun-13 20:22:54

Fanjo, there has been outrage, it was a vicious remark to make, it has been reported, and I hope it is deleted. Idon'tknow if you have been back to the thread, but several people have been onto support you.

FanjoForTheMammaries Sat 15-Jun-13 20:24:25

Thanks, yes, I am heartened that there wS.

It just felt like the awful panto thread for a while there.

I am just having a sensitive day I think blush

marjproops Sat 15-Jun-13 20:38:15

all this stuff should be taught in schools to m,ake (hate this word but cant think of another) 'normal' children aware.

ALL adults should be taught all this so they are aware, they wont stare or judge (almost makes me laugh when they stare at DC yet theyre little tarquins are the ones being proper brats and they dont have the sn 'excuse').

another answer- mine has disabilities, whats your excuse?

but we end up sounding bitchy and rude dont we?

penny100 Sun 16-Jun-13 08:30:52

Sorry if someone else has said this already but I really am sick of people casually using the word 'autistic' as an insult. It seems to be in really common usage at the moment. It cuts like a knife, it's so hurtful when it's spat out as a slur. The people who use it would never dream of using the word 'spastic' as an insult which was common in the 1970s but which mercifully is socially unacceptable now.

MalenkyRusskyDrakonchik Sun 16-Jun-13 10:48:01

Just wanted to say this sounds great. I don't have children but if you'll let me I will cheer from the sidelines for this campaign. smile

HotheadPaisan Sun 16-Jun-13 10:51:36

More the merrier!

MalenkyRusskyDrakonchik Sun 16-Jun-13 10:54:46

Great! smile

FanjoForTheMammaries Sun 16-Jun-13 11:16:25

Am off.

I find it hard to take this campaign seriously when someone posts that I need to call ahead and warn a cafe that I am taking DD there so people who don't want to endure her noise can finish up and leave, and MNHQ refuse to address it as the poster "wasnt being intentionally disablist".

Not a place I feel comfortable posting in now.

Thanks to all of the lovely and supportive posters

X

Dawndonna Sun 16-Jun-13 14:14:25

Mumsnet.
Fanjo has a point. You would have deleted a racist post, even if it had been unintentionally so.

autumnsmum Sun 16-Jun-13 16:22:07

No fanjo don't go I've always found you're really helpful

GobbySadcase Sun 16-Jun-13 17:06:06

Fanjo has a very big point. Unintentional disablism isn't acceptable. Unless all other isms are ok 'if you don't really mean it'.

FanjoForTheMammaries Sun 16-Jun-13 17:15:16

That cafe thread is even more like that dreadful panto thread now. Only read the recent posts if you feel strong.

MNHQ eventually took quite a firm line on the panto thread but that thread is just being left unmoderated.

I am sorry to go..I do like helping people and contributing. But I can't go through the way these threads make.me.feel IRL any more.

ShadeofViolet Sun 16-Jun-13 17:45:13

While I find the thread about the cafe upsetting, I think it does highlight a point. These are the kind of prejudices that we have to deal with every day. People who think you shouldn't ever be allowed out, shouldnt be in public.

We went to the aquarium the other day and DS was very excited (its his favourite place) He was shrieking with happiness and jumping up and down. A man in his forties pointed out to me that DS would scare the fish like that, and that if I couldnt control him I shouldnt bring him to the aquarium sad.

ShadeofViolet Sun 16-Jun-13 17:46:27

I did wonder actually what he thought I should say to DS. 'please dont enjoy yourself' or maybe 'you should be miserable at the aquarium'?

FanjoForTheMammaries Sun 16-Jun-13 17:50:55

I'd feel comfortable to stay if loads of decent people had stood up and said "what a horrible thing to say"...or if disablism was viewed like racism.

But instead I get flamed and accused of all sorts. Very sad.

Makes me feel physically ill when I read views like those expressed on that thread.

FanjoForTheMammaries Sun 16-Jun-13 17:51:30

And of that ignorant twunt at the aquarium

GobbySadcase Sun 16-Jun-13 18:04:47

Just goes to show that whilst this campaign is a good idea HQ also need to challenge any disablism, intentional or otherwise, in the same way that any other protected characteristic would be challenged on here.

Bluebirdonmyshoulder Sun 16-Jun-13 19:02:06

Fanjo I've reported your post to MNHQ purely to alert them to this issue.

I completely agree that MNHQ often let disablist stuff (intentional or otherwise) go when there's no way anything remotely approaching racism or homophobia would be allowed.

I've had a post deleted before where I was pretty angry about another poster's blatant disablism. I got deleted and the other poster didn't.

Come on MNHQ, great campaign but you need to set the standard on here first.

FanjoForTheMammaries Sun 16-Jun-13 19:22:02

Thanks. However they told.me by email to deal with it on the thread as they thought the disablism was unintentional. sad

FanjoForTheMammaries Sun 16-Jun-13 19:23:03

Hence my disappointment

GobbySadcase Sun 16-Jun-13 19:25:33

That still doesn't excuse it or justify it, Fanjo.
Hope HQ are reading and taking on board. Unless its ok to as anything you like around here now as long as its unintentional or borne of ignorance...

inappropriatelyemployed Sun 16-Jun-13 19:30:19

I agree. I do think equality issues have gone in waves:

Race

Sex

Sexuality

Disability

But no one seems to see disability issues properly in that light. Or no one with any 'power' in society despite the law.

So we get situations where it is ok to be 'unintentionally disablist' (and presumably that was established by discussion rather than assumption?? hmm

As Eleanor Roosevelt, who as a member of the UN Commission in Human Rights, declared about the UN Declaration on Human Rights:

"Where, after all, do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world."

I think those small places include MUMSNET!

MumuDeLulu Sun 16-Jun-13 20:15:20

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

inappropriatelyemployed Sun 16-Jun-13 20:20:14

Precisely. Seen in that context, how can this be condoned? It undermines precisely what it is said is to be achieved by this campaign.

Myth - disabled kiddies just need people to be kinder and a bit more 'tolerant' of them.

Fact- disabled children have rights. GET OVER IT! angry

Use that as the basis of your campaign!

Bluebirdonmyshoulder Sun 16-Jun-13 20:39:56

Well said Mumu.

MNHQ, I'm thoroughly disappointed in you.

I also think it's really niggardly of the cafe owners not to serve people with disabilities.

Waiting with interest....

hazeyjane Sun 16-Jun-13 20:47:38

Bluebird, the cafe owner (who was the op) didn't say anything about not serving people with disabilities, and there was nothing in the op to say the child had sn.

Summerloading Sun 16-Jun-13 20:50:13

Add message | Report | Message poster FanjoForTheMammaries Sun 16-Jun-13 19:22:02
Thanks. However they told.me by email to deal with it on the thread as they thought the disablism was unintentional.

MNHQ I think it's time to admit you got this one wrong. Whether unintentional or borne out of ignorance, it is still disablist.

Or else there's no point to this campaign sad

Bluebirdonmyshoulder Sun 16-Jun-13 20:53:00

Sorry, I've got the wrong end of the stick from reading other people's posts. Must admit I didn't wade through the whole thread, a mistake! blush

But I think Fanjo's points are completely valid. Whether there's ever anything in an OP about SN or not doesn't matter because it does sometimes seem as though whenever someone knowledgeable offers that as a possible cause of 'bad' behaviour, they get gleefully shouted down and some quite subtle yet nevertheless unpleasant SN bashing commences.

Thereonthestair Sun 16-Jun-13 21:28:38

I also agree that a lot of that thread is offensive, disablist, and casts doubt on what mnhq are presumably trying to do. I have just read the last few pages and cannot believe so many offensive, unlawful views have been allowed to stand. I am very very sad that nothing appears to have moved on. Not just from the pantomime thread but also from the position that the sn community needed to educate others. There are so many people arguing so congently against disablist and offensive crap on there it is clear that there is a long was to go.

Which brings me on to one of the biggest myths. Treating people the same means there is equality.

Reality reasonable adjustments should be made to accommodate disability otherwise ther is no equality as the opportunity is so unequal at the outset.

This means it is not only lawful, but fair to treat disabled people more favourably in many circumstances. Parking, queuing, making noises, getting out of buses and lifts. The reason the law enshrines these rights is because they are needed. And they are rights, not privileges.

Dawndonna Sun 16-Jun-13 21:34:51

That thread has exhausted me today. sad

Dawndonna Sun 16-Jun-13 22:02:31

Lost it now. Seems we don't know how to parent our dcs, either.

Let's start talking of educational rights not needs.

I think inappropriatelyemployed posted this and I it is a very good point. I have not been on mn this weekend, so I'm just catching up.

GobbySadcase Sun 16-Jun-13 22:32:53

Yes, now a request for an apology.
So short sighted I'm wondering if head is jammed up posterior.

BlackeyedSusan Sun 16-Jun-13 22:43:33

Your inability to understand my dc's SEN doesn't mean she's fine. It just means you're ignorant, arrogant, unprofessional and in the wrong.

this is worth repeating.

<glares at ds's teacher> that means you too

FanjoForTheMammaries Sun 16-Jun-13 22:54:57

Hmm..how to word it..

It will be a cold day in Hell before I apologise to a bitch like you? Maybe...

grin

BlackeyedSusan Sun 16-Jun-13 22:56:43

children with autism can have meltdowns over seemingly trivial things. you can not stop a melt down by telling them to do what they are told for mummy (yes you teacher) if only it was that simple then I think we might have been able to work that one out for ourselves. hmm

do not presume that it is poor parenting and that you dear teacher are the fount of all knowledge and can solve discipline problems by being firm. as it happens, i was teaching children to read and teaching in innercity schools, with hard to discipline children while you were still in nappies.

FanjoForTheMammaries Sun 16-Jun-13 23:01:17

What gets me about that thread...people are more annoyed about us mentioning SN and being upset than at the people saying hideous things...do not understand it

hazeyjane Sun 16-Jun-13 23:06:08

I know, I feel like I am being told to get back in my box for daring to mention sn, when it is perfectly relevant, when talking about children screaming or making noise in a cafe, to talk about our children making noise in a cafe.

tabulahrasa Sun 16-Jun-13 23:07:03

On the back of that other thread...

Disabilities are not always visible and can not always be noticed by a stranger during an encounter. There is not a big flashing sign over a child pointing out that they have a disability.

Equality does not mean treating everybody the same. Expecting a child with a disability that causes it to make noises can't be expected to just 'behave' like any other child any more than a blind child will learn to read by using the Oxford reading tree like every other child or a deaf child can be expected to listen to instructions like any other child or that a child in a wheelchair can go up stairs like any other child. Equality for people with a disability requires other people to make adjustments, even when the disability affects things that other people can control like noise or behaviour.

I've just posted something very similar on that thread, someone saying that I should take my child out if they were disturbing others.

Brdgrl, luckily that is just your opinion. The law, however, does allow that for those with disabilities reasonable adjustments must be made to ensure that there is an even playing field. You may be surprised to learn that equality doesn't mean treating everybody the same, it means giving everyone an equal chance. Half an hour out of your life is a reasonable adjustment. It's every minute of mine, not just half an hour. Please show some compassion and tolerance.

OMG, her reply to this post and tabulahrasa's is just horrific. I've reported it. shock

tabulahrasa Mon 17-Jun-13 01:46:57

I'm still sat here going shock hmmconfusedshock...

I mean, I was having a bit of a strong discussion and all, but that response! Fucking hell!

FanjoForTheMammaries Mon 17-Jun-13 07:13:18

That thread is appalling.

If MNHQ meant it re the campaign they should have been on it supporting us.

MN is very far from an SN friendly place.

This was a great chance to start the campaign.

Anyway..I said I was leaving. Wish it wasn't so but feel I have no choice.

Take care all smile

chocnomore Mon 17-Jun-13 07:15:37

why has mumu's post beem deleted yet people on the cafe thread are allowed to keep posting their disabilist views?

inappropriatelyemployed Mon 17-Jun-13 07:49:12

This is one of the reasons I rarely venture of this board - usually on to education for a specific education question.

It might be a good idea to explore that before starting any campaign. Why do MNSN posters only really feel 'safe' here? Would MNHQ if posters who are gay only ever felt safe on their own board or those who are from an ethnic minority background?

I think the last thing we need to is articulate a campaign as an appeal to disablist views to be more tolerant: 'here's me and little Jimmy, he likes Star Wars and can't help flapping, please me nice to him'

Personalising it like this is like an appeal for sympathy, like a Children in Need appeal for tolerance. Cue 'whose going to drive you home tonight' music.

How about 'here's Jimmy, his needs constitute disabilities under the Equality Act. This is the law which prohibits discrimination and imposes duties on public sector bodies to promote equality. Non discrimination laws were borne out of the horror of WW2. Jimmy has rights - GET OVER IT!'

inappropriatelyemployed Mon 17-Jun-13 07:50:14

That should be : Would MNHQ feel it acceptable if posters who are gay only ever felt safe on their own board or those who are from an ethnic minority background?

FanjoForTheMammaries Mon 17-Jun-13 08:15:37

One thing I must point out though. .exoticfruits is mentioning thread derailing over and over..anyone would think she was trying to stir up trouble wink

FanjoForTheMammaries Mon 17-Jun-13 08:21:59

Or at least close down our arguments.

We should be allowed to discuss our children too.

I have reported her but expect nothing to happen.

GobbySadcase Mon 17-Jun-13 08:35:22

I'm finding it piss poor that on a forum running this kind of campaign posts are being allowed to stand stating that families with disabled children should stay home so they don't inconvenience others.

Appalling and not in the spirit of the campaign.

But I'm not surprised. It's always been like this. We parents have always been low priority to MNHQ. In the past we were expected to educate. Fanjo feels she has to leave, I know of at least three others who have left here because of attitudes to their children on here and I've had to repeatedly NC due to the way my non sn issue threads were being picked upon.

Parents of kids with SN need the social contact forums like this being more than anyone. Often we're very isolated from the community around us. Yet we're repeatedly sneered at, our kids criticised... and nothing is done!

It shouldn't be a matter for 'debate' when these comments are made, it should be pointed out that they are wrong and not acceptable end of, much in the way that racist posts ate wrong and not tolerated.

HQ can you not see that this makes your campaign a farce?

Eyesunderarock Mon 17-Jun-13 09:17:40

I don't understand why MNHQ aren't using that thread as an opportunity to educate and explain to disablist posters what is and isn't acceptable.
To show that the site is capable of taking a lead, of having a 'character' and a moral stance.
Otherwise, like so many other campaigns and 'Let's get the message out there peeps' it comes across as the rather shallow and tokenistic attempt that I feared it might be when first proposed.
'What's the latest buzz thing that we can do to show that we care?'
What will the flavour of this moment be?
What can we do that will look good, cost nothing and not involve us in a meaningful commitment?

Smoke and mirrors.

VikingLady Mon 17-Jun-13 09:17:53

Fanjo please don't go, or anyone else prepared to put a supportive/informative pov on this. Today I'm starting to make a real effort to challenge those kinds of opinions and comments, both in RL and on MN - I usually just lurk.

I know DD is my responsibility and no-one else's, btw, but I don't know anyone in RL with SEN. MN is where I go to feel that DD and my life and fears are normal.

VikingLady Mon 17-Jun-13 09:18:45

Just realised I should explain that DD is very likely to be dx with ASD, and I am awaiting a dx myself.

Are MNHQ listening? Should we report our own posts and get them to have a look at them?

GobbySadcase Mon 17-Jun-13 09:23:48

Bingo, eyes. HQ's further silence is asking the campaign seem all the more 'token'.

Thing is what's the point of trying to educate about disability when actually the community at large here feels that behaviours stemming from disability should be hidden and not tolerated? That equality for people with disability shouldn't happen? And they stand uncorrected.

As I've said before it shouldn't even stand as debate. Something of a racial context along the same lines wouldn't.

GobbySadcase Mon 17-Jun-13 09:24:29

Ellen I've been doing that since last night. Finding the silence incredibly frustrating.

Eyesunderarock Mon 17-Jun-13 09:24:52

VL, that's why having the SN boards is the most useful thing MN can do for those of us with children that have SN. Because who else can you talk to?
Very few IRL, and none that can treat you as anonymous.
I used to belong to a site called Raising Kids that had an AS and ASD board, and it was so useful. When the site got bought out and closed down, I looked elsewhere and there was nothing other than MNSN that came close.
This is also where FB comes in handy, I'm still in contact with half a dozen posters from RK SN and that is the closest thing I have to a support network and a place to celebrate as well as share information and worries.

Eyesunderarock Mon 17-Jun-13 09:30:32

grin

Myth: We'd like you all to join us on our campaign to heighten awareness of SN in the community, to address the exclusion and isolation that many parents feel, to open the eyes of those who don't see, to bring the Good News of support and friendship to the marginalised and to lead the united masses into the Promised Land of a truly Inclusive Society.

Truth: Gods, do you have to be so sodding bolshie and Professionally Offended and touchy?
You're just not grateful, are you?

<kumbaya my lord, kumbaya...>

Eyes, grin

GobbySadcase Mon 17-Jun-13 09:39:45

That's so true, Eyes.

Signed
Another 'professionally offended' arsehole wink

HelenMumsnet (MNHQ) Mon 17-Jun-13 09:43:14

Morning. Huge apologies for our non-appearance on this thread. That's, frankly, embarrassing: we should have been here yesterday.

Unusually for us, there weren't very many of us around this weekend so we're just catching up with what's happened. It does sound, though, as if we could have handled the situation better.

We'll post again as soon as we've got a handle on stuff.

And I'm in the twunty bollocks brigade!

Thank you Helen. Please look at the café thread. There's at least one truly unpleasant poster. sad

I agree that the cafe thread is utterly awful. It is a perfect illustration of several damaging myths and how deeply entrenched they are.

Myth: one can tell whether someone has SN or not just by looking.

Myth: behaviour isn't part of disability, so it's not disabilist to judge and exclude on that basis

Myth: if parents aren't doing what you think they should, they're just lazy, bad parents. There can be no other explanation

Myth: parents will always want to volunteer information about their child's SN

Myth: volunteering the above information always helps, and suddenly makes people tolerant and understanding

Myth: parents of SN children are chippy and awkward and should just slope off to the SN ghetto and stop commenting where threads are not about SN at all because, as per the myths above, you can always know when it's an SN issue and if for whatever reason there isn't a SN tattoo on the child's forehead, the parents will always tell you.

GobbySadcase Mon 17-Jun-13 09:56:28

I'm sick of being cut down on here because my parenting experiences aren't the norm and perhaps some elements not consider socially acceptable.

FanjoForTheMammaries Mon 17-Jun-13 10:02:39

i see exoticfruits is STILL mentioning thread derailing in every single post. It is shocking.

FanjoForTheMammaries Mon 17-Jun-13 10:03:17

she MUST have an agenda, which must be to belittle us and our views.

GobbySadcase Mon 17-Jun-13 10:03:27

Yep, we should shut up about our 'defectives', clearly.

The cafe thread is also somewhat illuminating about where caring carrots come from. There have been several posts about being a teacher and managing 30 children's behaviour etc.

It's also interesting how many teachers on there claim to be able to tell if its an SN issue or not. This is certainly not DS1's experience at all. Even with a diagnosis his teachers don't seem to be able to recognise that his problems are SN related. No. He's just lazy, fidgety, unmotivated, easily distracted, disorganised, etc.

Cancerianmam Mon 17-Jun-13 10:51:32

This is great Mumsnet!

Would you mind if I shared it with CSI:Carer Support & Information group? We have quite a few parent carer members who would be interested in this I'm sure.

If anyone would like to read more about CSI pleas visit our website at www.csi-wyre.co.uk or email csi_wyre@outlook.com

Thank you

Tina
Project Manager

GobbySadcase Mon 17-Jun-13 10:53:50

I have a feeling that now open minded people are arriving on the cafe thread HQ are going to pull the "we'll let it stand as its being challenged" shtick.

Please don't pull that shit on us again. It mocks your campaign.

hazeyjane Mon 17-Jun-13 10:54:59

I know depressing to see it suggested that if a child is screaming at story time, the best solution is for them to be taken out and distracted....what every day? ad infinitum? We are going through this with ds, he has only just started with preschool,I don't want the only solution to be 'get him out so he doesn't ruin everyone else's story time'. I want them to at least try and see of there are ways he can access some of circle time - a song, a game, a sshort story which he could enjoy (preferably only 5 words long and involving firemen!)

GobbySadcase Mon 17-Jun-13 11:00:00

Not only that but how are they going to learn (if capable of doing so) by observing if they're being removed all the time?

(Completely understand this isn't true in all cases but high functioning DS does copy his peers, problem is he can't distinguish between desirable and undesirable behaviour).

Tbh, I give up on the cafe thread. It just shows how far understanding of SN needs to change.

GobbySadcase Mon 17-Jun-13 11:22:21

Apparently I'm jumping on people by asking why posts by parents with different experiences of parenting are considered 'derailing', even if they are in context with the OP.

Professionally Offended
Derailing

People round here really want to shut down posts by people with differing experiences don't they?

Don't want to face an unpalatable truth? Shut it down. Pour scorn. Isolate people who are already isolated.

GobbySadcase Mon 17-Jun-13 11:25:14

STILL no word from HQ...

Oh and tell them that they are 'selfish' and bring in other SN examples to show them that they must lock their unacceptable child away henceforth.

All totally in the spirit of the 'this in my child' campaign.

I post on other parts of MN.

And whilst we're at it MN, perhaps you could politely remind the people who post on "Relationships" that the reason a person behaving abusively towards their spouse or significant other is not always down to the bloke in question having Aspergers Syndrome or being somewhere on the autistic spectrum.

I have challenged that particular assertion more than once now on some threads in relationships hence me mentioning it.

It's probably taking a long time to read the thread and decide what to do, to be fair on MNHQ. It'll probably fill up before they reach the end, but then someone will start a part 2. To be honest, deleting the thread probably wouldn't help either. There'd be the usual rash of 'what happened to that thread' threads and the general consensus would be that the 'professionally offended' had it shut down.

Hence, everyone at MNHQ has come in to a nightmare morning at work.

buildingmycorestrength Mon 17-Jun-13 11:49:14

If only there was money in being professionally offended. I'd definitely take that up as a career because there is a LOT to get offended about in the way people treat the vulnerable.

Building: thanks for the pm. I'll reply once I wrestle the iPad from DS2 who is ill and using it to watch crap. I'm stuck with my phone.

I wonder what the pay and conditions are for the professionally offended. Do you think there's a final salary pension scheme?

HelenMumsnet (MNHQ) Mon 17-Jun-13 11:57:07

OK. We have (almost) got to grips with the cafe thread now. And we have posted to make it very clear that we do not tolerate posts that are disablist in tone and intent.

We've also said at that it's clear that the This Is My Child campaign has much to do in terms of raising awareness and extending tolerance of children with special needs.

Thereonthestair Mon 17-Jun-13 12:08:31

thank you for trying. But the fact that too little was done, and done too late has once again caused a lot of damage, and sadness.

I don't have a child who makes noises in cafes. And as such I am not personally concerned with this for my child. I am however very concerned that the amount of vtiriol which was being posted and directed at certain posters who were trying repeatedly to explain calmly and then sometime less calmly what matters to them, and why, and why certain comments were wrong, rude and offensive.

It makes me concerned that this site still has a long way to go, and society has further to go. I found many of the comments offensive and obtuse and I am therefore concerned that supporting this campaign may be counterproductive.

so time for something which I hope will soon become a myth. Tolerance means that the SN community have to tolerate abuse and ignorance everywhere. I hope one day that is no longer the case

Thanks Helen. I bet you could do with some gin by now. grin

HelenMumsnet (MNHQ) Mon 17-Jun-13 12:36:26

ArbitraryUsername

Thanks Helen. I bet you could do with some gin by now. grin

Thank you. I might have had some already... blush

Jux Mon 17-Jun-13 12:48:23

I would like to see schools discussing disabilities with pupils, properly. I would like them to say defiitely that just because someone is in a wheel chair does not mean they are more disabled than someone who isn't. And so on.

gimmeanaxe Mon 17-Jun-13 12:49:02

Perhaps the 'This is my child' campaign shouldnt be hidden away on the SN section where non-sn people rarely, if ever, venture.

HelenMumsnet (MNHQ) Mon 17-Jun-13 12:55:21

gimmeanaxe

Perhaps the 'This is my child' campaign shouldnt be hidden away on the SN section where non-sn people rarely, if ever, venture.

It won't be. This is just the "heads-up" thread, gimmeanaxe.

eminemmerdale Mon 17-Jun-13 12:55:24

Late to this but I have a deaf daughter and I am deaf too - although we are not 'considered' deaf' by society in general becasue we do have some hearing. I would like to also bust the myth that we need to be SHOUTED at grin, and no we don't 'look' deaf either. I have recently applied for and got lowest rate DLA - this is going to have to be put towards a private operation for dd to have a hearing aid, as she isn't 'deaf enough' to get one on the NHS - Despite endless studies that show that one sided deafmness is detrimental and can cause a lot of issues. So, NO, I am not a scrounger, I don't automatically get a car a badge and a house with the £21 a week they are giving me, and you do not need to look sad or shout.

GobbySadcase Mon 17-Jun-13 13:55:53

Right. Cafe thread full.
Glad I got the 'replace SN kids (yuck) with black people' post in.

hazeyjane Mon 17-Jun-13 14:04:14

I did just want to hand some flowers out to the posters who had said that they would be continuing to take their dcs out to cafes and on buses and to libraries and museums etc etc, flapping and spinning and screeching and all. As everyone had been congratulating those parent's of children with sn for saying they would leave (which is fine, as all parent's, children and special needs are different).

Because, like Rosa Parks refusing to change seats on a bus, our children are here, they, and we are society, and should be free to be wherever they are happy to be.

FanjoForTheMammaries Mon 17-Jun-13 14:05:49

Flowers and all sorts of accolades given on café thread to a poster who said we shouldn't mention a child may have SN.

Depressing and sums up MN attitudes, to me.

I am not leaving though as appreciate MNHqs stance although it was belated.

FanjoForTheMammaries Mon 17-Jun-13 14:07:21

These posters suggesting the kids should leave were absolutely disgusting IMO.

GobbySadcase Mon 17-Jun-13 14:10:05

Yep. We should all 'do the right thing' and isolate ourselves further.

Then you fit the saintly stereotype.

routineandrules Mon 17-Jun-13 14:12:18

Can I ask what section this cafe thread is in please?

GobbySadcase Mon 17-Jun-13 14:13:39

It's full, but AIBU.

tabulahrasa Mon 17-Jun-13 14:14:20

That thread was just so depressing.

I find it so upsetting to think that there are actually people that I might pass in the street who think that's it's entirely reasonable that a mother with a child with a disability shouldn't use a service in case that disability mildly inconveniances some other people.

routineandrules Mon 17-Jun-13 14:14:53

Thanks im going to read it.

GobbySadcase Mon 17-Jun-13 14:15:23

And they insisted on using 'sn children too' (teeth itch).

tabulahrasa Mon 17-Jun-13 14:18:49

In fact it's worse than that...one of them was a teacher. sad

Dawndonna Mon 17-Jun-13 14:22:30

Thank goodness it's finished. That just knackered me, yesterday. Really upset me too. Idiots!

FanjoForTheMammaries Mon 17-Jun-13 14:23:35

I probably wont post again on a thread and mention my DD's SN.

Which is hard as I only have one DD.

Have just been forced into my box by the bastards on here (sorry but they are) who accuse us of being touchy/derailing/a brigade/bitter whenever we mention our kids.

It is utter bullying.

I hope MNHQ could see it on the thread.

eggandcress Mon 17-Jun-13 14:25:07

I am now pleased with MNHQ as I complained about a thread and it has been deleted. I am sure it got lots of complaints actually.

eggandcress Mon 17-Jun-13 14:26:21

Sorry I meant complained about a post on the cafe thread not an entire thread gosh I am not that articulate!blush

The very worst post IMO has now been deleted. thanks MNHQ.

Eyesunderarock Mon 17-Jun-13 14:35:54

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

eggandcress Mon 17-Jun-13 14:37:02

I think we are both thinking of the same one Ellen

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

tabulahrasa Mon 17-Jun-13 14:44:47

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

HelenMumsnet (MNHQ) Mon 17-Jun-13 15:29:04

Just a reminder, folks, that personal attacks are against our Talk Guidelines - and will be deleted.

Eyesunderarock Mon 17-Jun-13 15:46:27

confused OK, naming someone is a personal attack?

HelenMumsnet (MNHQ) Mon 17-Jun-13 15:55:37

Eyesunderarock

confused OK, naming someone is a personal attack?

Yes, if it's to criticise them/accuse them. Even if the accusation/criticism is true.

So I may be the vilest fattest cow of all time but to post "HelenMN is a vile fat cow" would break the site rules.

Eyesunderarock Mon 17-Jun-13 16:01:25

OK, but my post contained no insults or criticism, and I'm sorry if you thought that it did.

tabulahrasa Mon 17-Jun-13 16:10:00

Well without naming any posters - even if it was purely to say I didn't know if that was them or not. hmm

I suddenly realised that people who thought that children with a disability that involves a noise should be removed from a cafe in case their disability upsets others could not just be a passerby or a neighbour, but could be teaching my children.

I maybe should have added or their dentist or other professions - but it just didn't occur to me to do that. The point I was trying to make is that anyone could have those views and I'd never know, not that I was accusing or criticising any particular poster.

HelenMumsnet (MNHQ) Mon 17-Jun-13 16:10:47

Eyesunderarock

OK, but my post contained no insults or criticism, and I'm sorry if you thought that it did.

Well, as we read it, you were responding to tabulahrasa's posts that said "there are actually people that I might pass in the street who think that's it's entirely reasonable that a mother with a child with a disability shouldn't use a service in case that disability mildly inconveniances some other people" and "In fact it's worse than that...one of them was a teacher" - and in doing so you named another poster as the poster tabulahrasa was probably thinking of, therefore implying that those were her (the named poster's) views.

HelenMumsnet (MNHQ) Mon 17-Jun-13 16:12:35

tabulahrasa

Well without naming any posters - even if it was purely to say I didn't know if that was them or not. hmm

I suddenly realised that people who thought that children with a disability that involves a noise should be removed from a cafe in case their disability upsets others could not just be a passerby or a neighbour, but could be teaching my children.

I maybe should have added or their dentist or other professions - but it just didn't occur to me to do that. The point I was trying to make is that anyone could have those views and I'd never know, not that I was accusing or criticising any particular poster.

Your post was only deleted tabulahrasa because it contained a C&P of a deleted post. You'll see that our deletion message says, "Replies may also be deleted"

Fine, I probably shouldn't have mentioned that particular poster by name, even though I just called her irritating and ignorant. I didn't name the poster with the really vile opinions.

Wow this thread really veered off in some different directions! I have submitted a pic of my DS now, hope you use it!

RazzleDazzleEm Mon 17-Jun-13 18:30:35

Really crucial to make it as un acceptable to use degenerative language like mong, retard etc as it is to use degenerative language about race.

Running people down with words like that is abuse and its all linked to dehumanising abuse - think Nazi's - Jew Dog....even degenerative literature about Marie Antoinette played a large part in her eventual beheading.

tabulahrasa Mon 17-Jun-13 19:20:15

Have you seen the r word campaign?

It's American, but it's quite handy sometimes to be able to go - here's it's unacceptable.

tabulahrasa Mon 17-Jun-13 19:20:44

here's why, even

sickofsocalledexperts Mon 17-Jun-13 19:24:10

I love that R word campaign in the US - started, I think, by a teenage boy with an autistic brother

sickofsocalledexperts Mon 17-Jun-13 19:33:44

Sorry no, soeren palumbo - the incredible teenage boy who made a speech at his high school which likened the term retard to the n word, has a sister with an intellectual disability. He started the End the R word campaign and his speech is on you tube, very moving

Bryzoan Tue 18-Jun-13 04:13:58

What a brilliant sounding campaign, thank you.

My myth to bust is "they all get there in the end"

My dd is doing brilliantly and I am so proud of her. But she is not going to magically start talking at 4 and then come up with the next theory of relativity, or run for prime minister. She will always find talking and anything physical really difficult - and have to work much harder than most kids to learn things. It is a big ask, but I'd live to disrupt the culture of platitudes that seems to me to ignore the child completely.

I also loved the term 'rights, not needs' in reference to education. My dd's (mainstream) preschool have in many ways been fabulous - but even they have a tendancy to break her away from the group for lots of one to one rather than supporting her learning in an integrated way with the others. Which is much harder to do effectively.

And also - myth - "babies are babies until they are walking" and "signing is for deaf people". People are always calling dd a baby because she is crawling. She is nearly 3 (though granted, does look younger). She knows she isn't a baby and gets confused.

I am also sometimes asked if she can hear anything. She hears everything and understands nearly all of it. I just sign to help her build her language as that is how she communicates for now. I have no problem explaining that but would love it if people wouldn't assume she is deaf in the way they talk to her.

I also really identified with the poster who gets told @but she's gorgeous". I get this a lot too - and tend to smile and say "yes, she is. She's very caring and she works really hard. I'm very proud of her".

autumnsmum Tue 18-Jun-13 07:00:53

Yes I constantly get told dd2 who has autism is gorgeous as though physical appearance is important and all her issues don't matter . Also mil told me I was lucky as she has a statement a ss place with transport and receives dla . These are things my dd needs and like everyone else here I had to work hard to get them .i resent them being described like a lottery win

zzzzz Tue 18-Jun-13 10:30:46

I think when people say your child is "gorgeous" or "beautiful" what they are really expressing is that they embrace that child and find them attractive and appealing. They are seeking to reasure you that your child is part of the "tribe", included and loved.

It can be frustrating because of course you already accept your child and don't always need that reassurance, and it seems to dismiss so many huge issues your child faces, but for me it's not anywhere near offensive. I find it sweet. (Obviously my children are also unbelievably attractive too, so I know they are also struggling under the onslaught of their beauty. wink )

BlackeyedSusan Tue 18-Jun-13 15:01:23

oi aarbitary, yoo hoo I am a teacher, and have managed 30 children's behaviour, 310 on the playground in rough areas... it's bloody hard work not always difficult. it is easy to assume that it is the parent's fault that the child is misbehaving, especially if at home time. i have witnessed one child with autism run off from his mum, slap, hit, kick and pull her hair...spit and swear and attempt to attack other children and his sister. of course he calmed down with me eventually after all the other parents bloody left and did not see how good he was

funny that, controlling 310 children, seemingly unable to control one small boy, my boy. hmm

by the way, the hair is growing back and the bruises faded after a week and ds is still absolutely bloody gorgeous and mostly well behaved when school have not wound him up with 3 different supply teachers in a week.

sickofsocalledexperts Tue 18-Jun-13 15:09:49

I think sometimes people just don't know what to say, so if they don't get it quite right but clearly mean well, we shouldn't be too hard on them. I was in a situation the other day with parents of children in a hospice, and I didn't know what to say - did they went to talk about the child's condition, or would it be better to pick a different subject? I probably did also comment on how cute someone's child was (it was true) but could it be that I pissed those parents off? Not everyone knows the precise, perfectly-judged thing to say about my autistic, LD boy, and I always actually rather like it when they spot how gorgeous he is!

Mind you, even I was pretty amazed when someone asked me the other day, on learning that my boy is autistic :"so when will you be sending him away to a home?"!! That would definitely be the WRONG thing to say, but then he was clearly a bear of very small brain!

I don't mind at all when people say my DS is gorgeous (he is!), but I don't like it when this is an add-on to saying how terrible it is that he is autistic, as if it is worse because he is so lovely to look at.

I don't like:

'DS is a lovely looking boy with a warm smile' as the first line of his statement.

Feck off!

Gunznroses Tue 18-Jun-13 16:45:04

On the back of what Dudesmummy said I have actually heard and also read somewhere before that children with autism tend to be exceptionally good looking. Is there any truth in this or is it a stupid myth ?

zzzzz Tue 18-Jun-13 16:46:01

Yes it is VERY odd in professional reports......almost every one of ds's start out with that sort of thing confused

Yes my DS's statement tells me at the very beginning that he is "delightful"!

I got it changed to 'DS is a capable boy'.

I wanted 'highly capable boy' but had to concede 'highly' hmm during the tribunal process.

(All very well being delightful, but when absolutely no provision/funding of any kind is forthcoming so far, despite it being on the statement, how does it help him?)

I have also heard that thing about autistic children being very good looking, but I can't really think of any reason why it should be so (although my stepdaughter calls DS the "fairy child" because of both his looks and his general demeanour). Probably really a myth?

Gunznroses Tue 18-Jun-13 17:44:54

Dudesmummy - quite agree! cant see why it would be so either, but im now starting to remember it was a documentary i saw on tv. Come to think of it, i did a project involving patient referrals once and nearly all the referral letters started with 'this delightful gentleman", some were more honest 'Emma is indeed a very stubborn old lady, but needs reassuring....'

Perhaps its part of medical writing etiquette where they have to put in a description of the person they are writing about that sets them apart from their illness/disability.

Gunznroses Tue 18-Jun-13 17:47:23

I've just seen this beautiful children

zzzzz Tue 18-Jun-13 17:50:38

Total nonsense.

tabulahrasa Tue 18-Jun-13 17:55:22

Um...my DS is pretty average looking, he was a cute toddler, but they all are then aren't they? He's been through the awkward gangly phase and he's now all spotty and can't be bothered shaving.

I mean I suppose he might be alright looking under that, but it's a bit hard to tell at the moment, lol

Gunznroses Tue 18-Jun-13 18:24:22

laughing out loud at might be alright looking under a hat grin

Gunznroses Tue 18-Jun-13 18:25:38

'alright looking under that' even...blush

JakeBullet Tue 18-Jun-13 18:25:59

This is a great campaign but I think we are in danger of forgetting that these beautiful children of ours grow up. If anything the services for adults with disabilities are even worse than for children, except that as adults they might no longer have an adult round to support them or fight for them.

I'd like to see this campaign address the issues faced by all those with disabilities. Including our children in 10, 20 ,30 or more years time. My son is autistic with ADHD and his needs are already a challenge with little support out there. As an adult what is there going to be? The answer is nothing and we need to be highlighting the fact that these children grow up and become the isolated adults and unsupported members of society.

Of course if this lack of support and isolation affects them really badly then they may cause problems...in which case we condemn them to prison often.

I like this campaign, I really do but it is too narrow.

tabulahrasa Tue 18-Jun-13 18:26:38

That! that! rofl

Though <squints at DS> a hat might help?

hazeyjane Tue 18-Jun-13 19:00:47

I suppose though, Jake, that MN is focusing the campaign on awareness, and attitudes (rather than lack of services and support) and as a forum largely made up of parent's of young children and teens it is bound to centre around that.

tabulahrasa Tue 18-Jun-13 19:09:00

The thing is Jake, in my opinion anyway, that you can only affect real change for services if you first change attitudes...so it's a good move forward at least.

Mumsnet is primarily aimed at parents, there's a large community of parents using it for support with the SN affecting their children, so it makes total sense that it's about children.

My poor hatless DS is 17 and you're right adult services is a scary prospect.

zzzzz Tue 18-Jun-13 19:11:18

Possibley adult services are less scary if children's services have already left you high and dry?

Dawndonna Tue 18-Jun-13 21:24:57

Not everyone with Aspergers is good at maths.
An imagination is not a sign that he/she doesn't have AS.

Two of mine will be reading Lit at uni. They are both AS.

One is doing philosophy, she is also AS.

Dh, also AS did Lit and Philosophy.

The most recent research into Autism suggests that it may not be that people are unimaginative, but that in fact it may be too much imagination, as with many Aspies, how far is too far, this can and does seem to apply to imagination, too.

GobbySadcase Tue 18-Jun-13 22:00:49

Not necessarily, tab.
I know of more than one person who is going through the frankly laughable transition process and could have done with a bit of support round here. But no... Cute kids is where it's at.

RowanMumsnet (MNHQ) Wed 19-Jun-13 10:13:25

Hello all

Thanks again for the input (including the criticisms - we are reading it all, honest).

We just wanted to let you know that we're aiming to launch this in early July; please watch this space for more details.

And please do keep sending in your photos - we've had quite a few now (and hopefully those who've sent will have had a reply from us!) but we'd love to have some more.

hazeyjane Wed 19-Jun-13 10:19:13

Well Gobby, 'cute kids' with sn aren't seen as that 'cute' when they are screeching or flapping in cafes.

Rowan looking for a photo of ds (who is a cute kid, I'm afraid!) to email now.

GobbySadcase Wed 19-Jun-13 10:34:20

Oh I know. Meltdown snot ain't cute.
Mind you they are when they're asleep for all of an hour

Just saying when they're the size of brick outhouses and STILL having meltdowns the reactions are going to be worse.

Plus crappy transition

RowanMumsnet (MNHQ) Wed 19-Jun-13 11:04:47

Cuteness is brilliant, but non-cuteness (however defined) is also both brilliant and welcome.

As we said below, we do know that this campaign isn't comprehensive. (You can see more in the OP about how and why we came to the plan that we have.) But we do hope that an effective awareness-raising campaign of this kind would have a ripple effect, making the broader population question their ingrained responses to physical, behavioural or cognitive 'difference' among all age groups.

We're certainly going to be including some 'myths' that apply to a much broader group of people than 'cute kids'.

BlackeyedSusan: I was commenting on the several teachers on the bloody awful cafe thread who seemed to think that being able to control 30 children had anything to do with the topic at hand. I didn't mean that they were actually superior and could 'sort out' children for their parents (although those making the comments obviously do think that way).

Of course, judging by DS1's experiences at school when he has had a melt down because of the teachers', it is all his own fault and a problem with him. If he does it with me, it's down to my parenting. hmm

zzzzz Wed 19-Jun-13 13:42:06

goby I don't see how a campaign raising awareness can fail to help older children. If the board doesn't support in the way you want it too then start offering the support you want to other posters. People will come.

BlackeyedSusan Wed 19-Jun-13 20:46:06

I got that Arbitary... just giving evidence that you were right and they were ignorant/arrogant/misguided... and a word that will not be repeated for fear of letting it slip out in school. grin

oh yes, and the child has the melt down with the safe parernt as the bloody teacher has wound him up all day by shouting/letting children shout/getting the loud musical instruments out/not telling him tht a supply is coming in/and aany other thing that generally upsets things... and of course it is not the teaches fault at all... oh no!

sandwichyear Wed 19-Jun-13 21:23:28

What I would find helpful would be some positive advice too, not just negative. For instance, a deaf friend once gave me some really useful advice (sounds totally obvious now but i perhaps stupidly hadn't thought about it before) about things which helped her, including making sure I was full face looking at her while talking so she could lip read, not sneaking up behind her etc. There seems to be lots of advice here about what not to do when encountering a child with SN but not a lot of practical advice about things which might be helpful/ what is a good way to behave in certain complicated situations.

Great campaign, thank you!

doormat Thu 20-Jun-13 15:43:38

I feel this is my child and the pics you send in of your kids is a scam to promote inclusion from what is imho a very negative website of sn community....this is commonly known on the web that mnhq are not supportive of parents of children or adults with sn

Instead of trying to sugarcoat mythbusters i think mnhq needs to take a hard long look at their policies of anti disablist comments and treat them like racism and. Other degrading comments towards other members of society like homosexual, ageist..list goes on...

As for the term additional needs...i think it is wrong...special needs is much better andencompasses the range of meaning of being disabled as it will only complicate matters furthur...
Even though i despise the term special needs...nothing special about attaching feeding tubes and oxygen to your child, or seeing them go through so much pain and have no quality of life to be demeaned and degraded by looks, stares, comments, disablist posts on here...
There is an old saying that you dont know till you walk in someones shoes....how apt

Do any admin on mn have any children with sn?

If so you would know what it is like to have to constantly battle with nhs, schools, govt agencies, housing, social services for things our children are entitled to...let alone battle against ppls misconceptions on disability as so many of you have tried to explain...and then to battleit will fall on deaf ears unfortunately

I feel the use of these childrens pics as i said earlier is to benefit mn not the children of parents on these boards....if that was the case disablist posts would of been deleted as fast as a blue ass fly on dung....

Orli Thu 20-Jun-13 15:44:22

I think it's a great campaign! my son (4) has OA (ocular Albinism), which means he doesn't look any different than any other blond child out there, but his vision is impaired. He is, as one of the professionals put it, one of the invisible kids. That is why it is so hard for us to get people to understand and give him the help he needs.
I guess my myth will be exactly that - he looks so normal!
As a child with vision problem he also likes his routines very much, and no, it doesn't mean he is "on the spectrum", nor does his dislike of loud noises!
I don't get a lot of people staring at us on the street, but those who hear our story usually go with the "you just have to love him" comment which just makes me furious...
Anyway, as a parent to a child with SN, I just want to say again that I think it's a very important mission you took upon yourselves - to educate the public and help the kids. Thanks smile

doormat Thu 20-Jun-13 15:53:59

Also why not ask for pics of children with no disabilities....

Why because parents of non disabled kids will be up at arms at the thought of their childrens photos...eith a caption i like star wars could be used for some paedophile to get off on...the web is not a safe place as we all know especially for pics of innocent children

Eyesunderarock Thu 20-Jun-13 16:29:05

DS is physically attractive, and can PFN for hours.
He doesn't get the idea of girlfriend as opposed to friend, he doesn't understand all the unspoken signals that girls try on him, he takes everyone at face value.
Sadly, as he is now chronologically 18, he may be one of those men who gets endlessly whinged about on MN and other places, 'he should know, he doesn't understand, he ought to realise, he's ignoring me...'
Unless he gets someone who understands him, and who actually uses words and clarity of thought to express what the problem is, rather than relying on telepathy, sighing and meaningful glances.
His best friend is female, he thinks she's wonderful. I knew a lot about her before we met; interests, talents, what her hair was like, what subjects she was studying...
He omitted to mention that she was a comfortable 14+ stone, it was not relevant to their relationship.

Eyesunderarock Thu 20-Jun-13 16:30:15

I like the idea of a random selection of children, and then 'Spot the disability'
That's right, you can't.

There, sent a photo of my tribe. You would struggle to spot which one is autistic! (Until he moves or speaks! grin )

Tutak Thu 20-Jun-13 17:39:19

This is a great campaign; as younger sibling to a 57-year-old with autism and LD, I've heard a lifetime of stupid comments from the public (' a good slapping would sort him out'; 'I don't care if he's artistic, my child's good at painting too but I wouldn't let him get away with that kind of behaviour' And post-Rainman, 'ooh, what's his special gift?' - answer, none. He's not here to do tricks for your entertainment, less than 2% of people with autism have savant abilities. Ironically, it's got easier to deal with the public as my brother's aged, since adolescence it's been obvious something is different about him, it's not just 'bad parenting'. Also, he's calmer and less anxious when he's out and about, - I wish my mum had lived to see how much better things are for my brother, it's not that the autism has gone away, just he grew older and calmed down.
I'm also the mum of a 9-year old DS with a completely unrelated genetic disorder but who does have SEN/speech problems - result: professionals advising me to 'take the ASD diagnosis, it will get him services' - a strategy which may account in part for the increase in ASD numbers but is just plain wrong. DS doesn't have ASD and the 'services' offered are inappropriate and would be wasted on him.
I also like a line I heard: "it's not inclusion, it's proximity" - the tendency of mainstream schools to accept a child with SEN if they come with a hefty amount of support hours in their statement which can be used to pay staff who then receive no specific training in how to educate your child but are good at walking them round the playground, tucking them away in the library, anywhere where they won't be a nuisance to other children...
There's a lovely blog by a father of a boy with ASD and cerebral palsy which I can't recommend highly enough: www.mysonsnotrainman.com/blog.html

graceleighsmummy Thu 20-Jun-13 17:46:04

Just because my son has hearing loss does not mean he needs pitying and does not mean he will be bullied when he starts school. I find the older generation are much more thoughtless with their observations n comments my son has lots of friends at preschool and kids love him regardless of his speech delay and hearing loss x wish people would engage brain before they speak and perhaps think how they would react if they were in my sons place

Eyesunderarock Thu 20-Jun-13 17:55:06

Ahh, that's part of the problem, isn't it?
Parents were often happy if they could pity us, commiserate with me on his rage and make bland little comments. Whilst being thankful that he wasn't theirs.
What really pissed some of them off, and generated negative comments about extra support and 'special treatment; was if he outdid one of their children on his own merits.
Which he did, in several areas.
I think many are only comfortable if those with disabilities stay in a defined pigeon-hole.

zzzzz Thu 20-Jun-13 18:03:24

I prefer "additional" needs, as for me "special" implies "better than" and I don't like the nt/sn competition vibe.

Rocket1 Thu 20-Jun-13 22:20:37

The campaign is such great news - parents with SEN kids are on their own and generally don't get any support unless they fight fight and fight again - and the fight never ends.
Myth - if your child has a recognised disability they will get support at school.
Fact - we spent a fortune on a legal case to get our visually impaired daughter a statement of SEN. We won but the stress was horrific and the process truly appalling.

elerismum Thu 20-Jun-13 22:48:00

I heard this once at a support group. When asked in the street "oh, what wrong with him?", the mum answered "do you know I think he's coming down with a cold".

bochead Fri 21-Jun-13 14:22:34

bump

why isn't this stickied?

Autismmumma Mon 24-Jun-13 14:05:50

Love this idea, anything that helps get past the "invisible disability" gets a big thumbs up from me.
The "they'll grow out of it", "but they look so normal" and "she's off on one again" always gets me. Last comment made by a mum fully aware of my daughter's anxieties and autism.

RowanMumsnet (MNHQ) Mon 24-Jun-13 16:34:12

bochead

bump

why isn't this stickied?

Sorry, we lost our sticky there - not sure why! We've re-stickied it now.

frustratedandangry Tue 25-Jun-13 10:30:45

I wondered where this had gone!

Liliuk Wed 26-Jun-13 14:19:52

myth: "we should wait as long as possible to diagnose a child because you don't want to stigmatise" - wrong, wrong, wrong, the earlier the intervention, the better the chances for a lifelong improvement.

Liliuk Wed 26-Jun-13 14:35:53

children with ASD are not able of being happy or have no sense of humour - no true

frustratedandangry Wed 26-Jun-13 16:40:51

Totally agree with liliuk, there seems to be a self perpetuating myth amongst health and education professionals that disability is a stigma and something to be avoided at all costs. This attitude makes parents feel as though they are seeking to stigmatise their child, when all anybody ever wants is help and support for their child's difficulties.
The stigma remains because we are conditioned to be ashamed. Disability discrimination is so rife most people have no idea how ignorant they are.
There is a very prevalent myth that diagnoses are easy to get, they hand them out willy nilly to parents who are lazy and only want a diagnosis to get access to benefits, there's absolutely nothing wrong with these children, at least nothing that wouldn't be cured by a bit of discipline (I have heard all this from a group of professional educated women, one of whom is a teacher). So of course, this leads to parents feeling even more judged and even more ashamed...

VikingLady Wed 26-Jun-13 20:08:04

Liliuk - completely! At a rough count I'd say half of DF's family have/had ASD and I'm being dx now. Family dinners are hysterically funny. I still remember making mashed potato come out of DB's nose!

VikingLady Wed 26-Jun-13 20:12:12

More of a misunderstanding than a myth, but dis