New MN campaign around children with special needs

[RowanMumsnet]

Hello

Following on from this, um, lively thread from a couple of weeks back, we wanted to follow up on kungfupannda's excellent suggestion of an MNHQ-backed awareness-raising campaign aimed at - in kungfupannda's words - 'making it absolutely, uncompromisingly clear that in order to fully include children with severe disabilities, people might have to accept a bit of disruption once in a while.'

We were thinking about something along the lines of our We Believe You campaign on rape myths; that is to say, an ongoing awareness-raising project aimed at the general public, rather than a short-term campaign with specific policy requests attached. We would be thinking about pages on Mumsnet itself featuring the experiences of our posters, activity on our Bloggers Network, ye olde Twitter hashtagge, and any press coverage we can grab.

The suggestion on the thread was for the campaign to be called 'Tolerance is...', but we at MNHQ are a little unsure about the word 'tolerance' (which can suggest barely-contained irritation, rather than the kind of empathetic understanding and generosity of spirit we'd all like to see). So we were wondering whether something along the lines of 'This is my child' would work better?

Please feel free to use this thread to give us any feedback and ideas, and generally let us know what you think.

Thanks
MNHQ

'change your reaction' (or maybe even 'change your expectation' - I remember once on a thread someone said they would probably sigh internally if dd1 sat next to them on a plane, as htey would expect to be in for a tedious journey. actually, she travels well, and enjoys aeroplanes, so they would not be any more affected than if I sat next to them. but they expected to be, and sometimes that expectation can be the trigger for a rough ride) woudl work for you and your ds, dev, wouldn't it?

I've been where you are, dev.

I was bloody lucky that for us it was (relatively) short lived. I spent 3 years virtual prisoner with dd1. and it nearly killed me (no joke). I know a little of what you are going through, and I hope that you are finally going to get the help you need and deserve.

zzzzz I'm sorry but I feel you parents of SN kiddos massively underestimate the life we have with DS!!

silver DS is fine in the car, can go for hours. He wouldn't step into an airport lol

Thats gobsmacked me

What I do imagine is the life I have with my other 3 with special/additional needs.

However when you come across someone like DS you will understand.

Right thats it for me, isolate someone further.

Goodbye.

I know, dev, it was a clumsy point to use in that post.

dd1 used to be the same as your ds. didn't do/play with anything, didn't want anything other than me to sing to her (nonstop, all day). wouldn't go anywhere without screaming. lots. she was small, so I could bundle her up for the necessary stuff, but we couldn't always do it - the result in her was too much.

for 3 years we didn't go anywhere or do anything. and I still thank god daily that she came through it. because it was nearly the end of me, and of our marriage.

I have never implied it's easier for others!!

I think you too would find my situation difficult and very isolating.

Defo last post from me, in my defense.

What about something along the lines of the "That's not my..." series?

That's not my child (picture of wheelchair), it's too cold to cuddle.
That's not my child (picture of something related to different disability), it's too (difficult to ).

With the idea that the disability, whatever it is, doesn't define the person.

Etc. with "that's my child" and a large picture of kids ranging from NT to disabled either physically, intellectually or whatever, all playing together. And a tagline along the lines of - They can see past their limitations, why can't you?

Hope I haven't offended anyone, I have very limited experience of SN children or adults. Apologies if I have the wrong end of the stick.

dev, it just seems as though everytime someone tries to open a door on this thread, you want to slam it shut. Whenever you post, the unbelievable difficulties you face every single day comes across so powerfully. I think that sometimes you post what lots of people don't want to hear, and I think it is really important that people do hear what you have to say, because you and lots and lots of parents have to do this every day.

Hell I don't know what we have in ds's future, I try not to think too far ahead because I have to deal with what we have here and now, but I do know that anything can happen and the rug can be pulled from under you - in the last 2 weeks we have found out that ds has a hole in his heart, may need oxygen at night, has to have a ct scan and may have something wrong with his immune system.

But I do get the impression from your posts on this thread, that you feel as if everyone else has it easier, and that those of us with 'cute kids' or 'sn kiddos' are living in some sort of halcyon la-la land.

Re the campaign - I like the idea that it is about society bending to fit the person with disabilities, rather than them having to bend to fit into society, IYSWIM.

Just thinking about this bit from KungfuPanda's post, that struck a chord -

'Perhaps something along the lines of "Tolerance is..." with different scenarios, all making it absolutely, uncompromisingly clear that in order to fully include children with severe disabilities, people might have to accept a bit of disruption once in a while.

And a request to people to "sign up" to an agreement to show that tolerance when it is their time to find themselves irritated/disrupted/whatever by disability.'

ok put it like this.....I see kids who have down syndrome getting support and making progress.

I see kids with ASD getting support and making progress.

I see kids with PDA getting support and making progress.

I see kids who are out of school getting the correct help and the correct school.

I see all the issues that go hand in hand, his heart condition, mobility issues etc etc and how the impact on each other.

I see cinema screenings for ASD and wish he could go.

I hear others say they are isolated, what they don't see is while there kid is in school they have some respite.

I could go on and on.

What I don't see is the support and progress for DS as he is too challenging and complex and basically costs too much.

These are the special needs people who are hidden, it's what I strive for it not to happen to my DS even though it's been threatened a few times.

These are the disabilities who will be forgotton, not discussed, not highlighted on a thread/campaign like this.

I'm sorry you all think the worse of me, it was never my intention, so I will sign off now and walk away from MN altogether, maybe 3 socks is right we don't fit.

Dev. Please don't try to under-estimate what other parents of children with SN and disabilities have to live. I doubt if anyone is seriously doubting the difficulty of your situation, but it's honestly not meant to be competitive.

My boys hardly fly under the radar, anyhow. DS2 is the 4' 6yo, usually on the end of a safety harness, jumping up and down and squealing. DS1 is the one sitting on the floor, loudly ranting about this being the worst shop/house/town/carpark ever and it needs to be closed down and demolished. ASD isn't always "invisible"

Iteo suggested pics of kids playing together. DS1 doesn't "do" playing together. Not with other children, anyhow. If a picture were to truly represent him, his hair would be uncombed, his clothes on rather crooked, or back to front and he'd be completely alone, with his back to you, possibly using his mp3 player, building something incredible with lego.

I'm not going to take umbrage at the idea of kids with SN and disabilities playing together, though. As parents of kids with SN and disabilities, most of only have experience of our own children. And yes, my children can be incredibly cute, but DS1 telling me I need to die because he's overloaded or has to do something he'd rather not? Really not cute.

FFS I am not under estimating anything, I missed a few things out through my stream of tears I'm sorry>

What I meant to add was we all battle for the support and progress made.

Plus I was talking about those in institiutes, yes it still happens.

Right I now where I belong, bye.

No, don't walk away. You are walking away, no-one is pushing you away.

It is awful that you have no support, that you are so isolated. But I know nothing, ds is only 2.7, we haven't even started on this long journey and I have no idea where it is going to go, or how hard or easy things will be in the future. But I read your posts, and realise just how hard it could be, and how much you must be doing for your ds and to get through each day and that is valuable, it is important.

You are damning the idea of a campaign because you say it will not include you and your ds, but it should include disabilities of all complexities. You say that it will only be about cute sn kiddos (sorry combining your and threesocks descriptions) - which just seems to belittle everyone else's experiences.

Will the campaign include adults with their own particular special needs? My elderly father has dementia and is incontinent. He carries a urine bottle in a black bag and uses it when he needs it. Sometimes he forgets where he is and tries to use it in public. If he sat down next to your sn child, unzipped and urinated would you see confused old man, or a pervert exposing himself. how tolerant would you be of his special needs?

No one is telling you where you belong, Dev.

No one has suggested a one size fits all portrayal of disabilities. I have 3 boys with ASD in my life and know 2 adults with aspergers. 5 very different people. I have HMS but don't consider myself disabled (yet), despite living with chronic pain (and being one of those people who takes their time and fumbles everything at the checkout - something I know can be the cause of much intolerance from others). I know people with the same diagnosis who are very disabled by it. I would never presume that their experience is the same as mine.

Others, whether disabled or able-bodied, whether they have SN or not, will never know what that experience is unless we tell them. That's half the point of this campaign, isn't it?

Why so snippy determindma?

Yes if he sat next to my 'sn child' I would assume he had dementia.

Dev - that's not always how it works. My son has ASD, ADHD and GDD. He is not given support, he is not making progress.

He gets worse every day and the people who are supposed to help don't. There isn't enough funding, enough time. It's too late for him, he will never improve, accept this is your life now, are all things I am told when I beg for someone to help him.

His speech therapy has stopped, they say its not working and so they can't continue paying for it, his school doesn't want him anymore they can't cope.

That's the whole point of this campaign, don't judge by diagnosis. You say you see a child with ASD getting support and making progress? Well not all of them, just as not all children with Downs will. Some children have complex multiple disabilities and can't be helped, some children are not even correctly diagnosed and so there is no help offered.

I think tbh we all see kids with various disabilities getting support nd making progress. I would think though that there will be children and young adults in each group who are not making progress who are hidden away. I know that ds is sometime just too bloody autistic to fit into the provision for children with asd. That frustrated and upset me for years. I felt on the outside of provision for what seemed to be normal asd provision FFS. I think having a child with a disability doesn't make you an expert on this. We all have a lot to learn.

I really don't get how posts can become so unpleasant and leave folks feeling worse than when they came onto the board.

As an example of including people with multiple disabilities and health conditions, someone I know on Ravelry recently lost her teenage daughter. Her daughter was severely disabled and incredibly poorly and spent a lot of the past few years in hospice and the past year in a steady decline, health-wise. Pneumonia got the better of her, in the end.

Her family had a quiet funeral, after which they watched her favourite DVDs and ate her favourite soggy chinese curry and chips. Her favourite colour was purple and people all around the world wore as much purple as they could that day, in her memory. I still have the sparkly purple toenails (Even though one of her arms was bent in a tight spasm, to the point where her consultant had considered cutting the tendon to release it, she liked having her nails painted) Our ravatars all wore purple, too.

She was far more than just a very poorly girl in a wheelchair with no opinions, likes or dislikes. That's what we're supposed to be getting at, isn't it?