TV Prog re Looking After Child with Disability - prob not for Pollyannas!

[Davros]

There is a programme on TV next week called When A Mother's Love Is Not Enough. It is on BBC1, Tuesday at 10.35pm and is presented by Rosa Monckton who has a daughter with Down's Syndrome (and is remembered mostly as Princess Diana's friend). The programme focuses "deliberately and courageously" on the hardships that come with caring for a child with disability, rather than the joys. So it may not be for everyone! Maybe it would be a good idea to persuade other people to watch it, rather than ourselves, e.g. your in-denial relatives or unhelpful professionals?

When we have had discussions about this sort of thing in the past on MN they always seem to cause a divide and some trouble! I have am more and more alarmed at the clear progression towards the "sanitisation" of Autism and disability in general. I feel that a lot of the issues have become "ideologised" to the point that you have to think very carefully before saying anything remotely negative about the experience. I'd be interested to know what others think after this programme has aired. It may be a load of rubbish that makes me want to put my foot through the screen (my usual reaction) or it may be a refreshing change from the usual.

Yes, disability and any so-called "hardships" don't exist, they are all in our minds! If we just changed how WE think and feel everything would be OK wouldn't it? Well I did find that changing how I felt and behaved helped (Mindfulness) helped massively but it still didn't change DS's difficulties just in doing the things he likes, never mind the things he doesn't!

"...it is the other people in the big bad world"
Good for you 2shoes. It sounds like you are coping extremely well with your DD.

Personally, I don't think everyone out there is bad and horrible. I have met some wonderful people, extremely understanding and tolerant with my DS.

However, I put myself in their shoes. I can understand why they wouldn't want to be around a child who is constantly grabbing their kids' faces and hair, running up and down non stop and showing difficult behaviour. I really can. It is not their problem to have to cope with.

If you read some threads here on mumsnet, you will find that EVEN teachers, who should know better, accuse parents of not doing their job when their child with SN shows difficult behaviour. It just shows that people do need to see programs like this one, to understand how complex SN can be and how difficult it is for us parents.

of course there are good people out there, I have met loads.
but I would love to take dd shopping, she loves it, but it is always ruined by the starers, the little dears just standing still staring. Pushing her chair along the street is so hard and the pavements are either blocked or so wonky my arms ache.

of course dd is hard work, and as she gets bigger even the smallest thing gets harder and more time consuming........but.......

my life would be easier if I didn't have to spend the next couple of years battling to keep her at her school post 16. that is not because of her disability, that hasn't changed, her needs havn;'t changed.

I think it's about opportunity really. DS1's disability became a lot easier for us as a family when he was given opportunities (surfing, horse riding for example). These are actually quite easy to provide - just need an environment that can cope with a child who is pretty much feral.

I agree that services don't provide a magic solution and take away a disability, but they do give families more choice. Eg the choice for the mother/parents to work - which can make a huge difference to health and well being. They provide an opportunity to live lives around disability rather than be completely overwhelmed by it. And simple things (such as all the work ds1's school has done on going to cafes) makes everything so much easier. As the vast majority cannot access services (for example I think it is ludicrous that there are only 6 playscheme places a day, an no after school care suitable for those with SLD's and Challenging Behaviours in a big city such as the one we live in) I do think it's important to push that point that access to services improves lives.

Well I did face the "symptoms" before we had those things which is why we sought them. Of course I agree that better services and attitudes are desperately needed but that is not the end of the story, that's all I'm saying. I agree with SDMT about opportunities and we need LOTS of choice too as our children are different and have different needs which also change, which again is a services issue. But I do get fed up with this movement within the disability community to make everything palatable and fluffy.

I agree we should not want to make everything palatable and fluffy and programs like the one we are discussing may help us avoid 'fluffiness' but I suppose the issue is whether it will make society (whatever that is) think 'We must fund better services' or 'We must look again at euthanasia laws in case something like that happens to me'. It's surprising how many people believe that having a positive attitude to cancer can affect the outcome when there is no evidence whatsoever to back this view. Likewise for individuals affected and the wider society, an SN child can be a bitter pill which does not benefit from sugar coating or relentless positive thinking - but in the longer run, maybe a taste of bitterness is essential to social survival.

One programme won't make a difference but it is interesting that this aspect is being covered. I think it is in response to the publicity over the mum who killed herself and her disabled daughter (I feel shit that I can't remember her name). It seems that she had managed until the point when her daughter got to an age when services changed and looked like there were going to be scant and utterly inadequate.

I want both things at once. I want the SN community to keep pushing, but I also want my dd not to have to feel guilty because she has support in place and still feels like a pile of shit.

I think some of the palatable stuff comes from those with disabilities themselves. People with Aspergers who think they speak for those with severe autism for example. And the whole social model which more or less ignores those who have learning disabilities. More recognition needed for the diversity of disability perhaps? And an understanding that all with disabilities require tailored support :dream dream dream dream:

That is the biggest problem, isn't it, the tendency to lump all disabilities together. And if someone who is disabled, particularly someone who looks more disabled, has just been on to say that disability isn't a problem, or is only a problem for society, then you feel a whimp for pointing out that actually it is a problem for us, full stop.

Otoh I can fully see why people with disabilities don't want to be mired down in the gloom and doom- that way lies quality-of-life discussions and the pressure to terminate and heaven knows what else.

I agree Cory. But we should still be able to have those discussions, own those feelings and admit to the practical and emotional shit. At the moment I feel that we can't usually.

Do you mean online or in RL? I felt it became impossible to talk about the reality of severe autism within the NAS so I left. But the support services (e.g. ds1's respite centre and his social worker) are still very open to talking about the day to day practicalities and difficulties. IME parental support provided by charities dealing with learning disabilities is currently more realistic than that provided by the NAS. Although of course there can still be a bit of a fluffy cloud picture for educating the general public- I sort of think that is needed though as many people without experience struggle to think of those with LD's as having equal rights to those without - and I think you do have to work hard to point out that at the end of the day these are just people. I don't know what the situation is like for other disabilities.

I suppose I mean in all sorts of fora (!). The media, but also the perception among the general public and but probably mostly within the "disability community". By that I don't just mean activists, people with influence who are involved in practical terms, or people in the media. I mean the people I know and meet on a day-to-day basis, some who are good friends, others are acquaintances, others one-off encounters. There is often that unspoken acceptance that we all know our lives are "difficult", "tricky" BUT we wouldn't have it any other way and its all a great experience

Hi Davros,
I've just read through all the responses,i think everyone makes good points,we all have our own experiences and therefor opinions formed by these.
I just wanted to say thanks for the thread though because i wouldn't have known it was on otherwise (in a household of 7 i don't see much tv, someone else always has the remote ) but i will be watching this .
I like to watch these programmes with an open mind.
We all have our own views which we're entitled to but me personally,i like programmes about disability in all its forms and caring in all its forms because it brings things into focus even if just for a short time. The only time my family and friends ever speak to me about disability is when they watch one of these programmes.
The rest of the time if i mention anything about my son or daughter they just say 'oh you cope so well/don't know how you do it'....and then continue telling me about their latest holiday they've just booked or the stress of having their extension built etc !
So each to their own but i'll definately be watching and thankyou

Thanks Davros, i'll be watching.

DS2 has made me smile & cry in equal measure over the yrs. Our family is all the better for ds2, but lets face it, its no picnic!

Yes, we do all have our own experiences and are entitled to our own opinions. If someone says that they feel their child's disability has somehow enhanced their life, or their family's life and that, hard as it may be, they wouldn't change their disabled child, then that is great and quite right that they can say so. But somehow it does not seem acceptable or possible a lot of the time NOT to say that iyswim.
Don't get me wrong, I'm not some misery going around wailing about how DS's disability has ruined my life but would I remove his disability if I could with a "magic pill"? Yes I would. I don't expect everyone else to feel the same but I think it should be OK to feel how I do and be able to say so.
I'll probably spend more time thinking about Merlin this week than this TV prog tbh!

Me too, i would remove ds2's disability in an instant if i could.
I think he has a personality all of his own, his ASD & CP are just added extras, that quite honestly we could manage without

Merlin, oh no... but X factor, well now your talking!

X factor too.... and strictly..... and hole in the wall!!!

Hi Davros (it's been a long time!) and thanks for the heads up. I'll watch it if I remember. Will be interesting to see how far it goes.

I think parents of children with disabilities find themselves in an almost impossible situation when it comes to presenting their reality to the world. Harp on about the negatives and it just reinforces the truth for many that disabled people bring only suffering and should not exist. Yet I also baulk at the saccharine 'my child is different and it's a bit of hard work sometimes but I'm so lucky to have them' type articles that appear all the time in magazines. Because it doesn't come close to reflecting the complexity and sometimes utter shiteness of it all.

I think the reality for many parents, at least for me, is all of that. And the hardest thing of all to convey I think is the power and complexity of parental love. I love dd1 absolutely, that is a given. But do I always feel loving towards her? Absolutely not. Would I love her more if she weren't disabled? No. Would I find it easier to love her? Possibly. Do I wish she weren't disabled? Yes I do. But would my life be perhaps more shallow if I hadn't gone through all I have? Quite possibly.

And that's only a few thoughts off the top of my head. How the hell do you ever convey that?

Can you link direct bbm (sorry am being a bit lazy but can't see it on the Mail front page).

I think your feelings are similar to mine HITC. And I have been pondering some more (sorry all ). I suppose for me I think people could watch a miserable programme and think 'oh thank goodness that's not me' or something else bordering on pity . When I think they would be better off watching and thinking 'gosh I could have a lot more to worry about perhaps I should stop worrying about little Johnny getting level 2 rather than 3 in SATs/violin lessons/something else that really isn't v important'. And also I think it's the sort of thing that people watch from the comfort of their sofas as something that happens to other people.

I'm overthinking! But something that has struck me is that over the last few years- after the initial shock, and dealing with finding services etc had faded is that as a family we ARE happier than lots of people I know who don't have our constant stress levels. Certainly we have a lot more moment to moment stress, but that just doesn't translate into misery in the way I think people looking in might expect. I think some of the happiness comes from being challenged (life is never boring) and - the big one- perspective. I think without ds1 I would just find stupid things to get stressed about. I see enough other people doing that, and am sure I'm no different.

Here's the Daily Mail article

I probably will watch - it looks as if the programme will focus on service failings rather than the dreadfulness of disability. And we all know it's pure lottery getting support. We actually at last have a good care package, but only because ds1 was given a really really good social worker for a year who believes in giving support before families breakdown. Unfortunately we're now back to duty social workers- and ime you may as well talk to the cat as talk to a duty social worker and expect anything to happen- but we had our good one long enough to get lots in place.

Pure fluke though - had we been matched with someone else we no doubt would still have nothing.

I actually think that daily mail article is fair and I thought this bit at the end was actually a good conclusion:

"'

What he would like to see introduced here is a passport scheme, whereby a disabled child is given a single assessment that then opens the door for everything that child needs - respite care, specialist healthcare, benefits, schooling etc - without parents having to answer the same questions over and over again.

It seems a sensible and progressive idea and surely at a time when we have a Prime Minister with a disabled son (Gordon Brown's son, Fraser, has cystic fibrosis) and an Opposition leader who has been through the most terrible experiences, we ought to be able to make real progress in how we care for the disabled and their families. We have to start looking after these people.

What we have to avoid is falling into the old trap of brave words failing to be matched by deeds or frontline funds. We've heard a lot from politicians in recent years about getting more help to carers - and quite rightly so - but of the £50million allocated to carers this year, only £10million has reached the families who need it. The rest seems to have disappeared into the murky finances of our Primary Care Trusts.

That's got to stop. There has to be less money spent on administration and more on delivery; there needs to be less assessing and more providing. And yet the gap between the rhetoric that spews from Whitehall in the form of endless initiatives - such as Better Lives, Better Care and Aiming High For Disabled Children - and the reality on the frontline is wider than ever.

Faced with the exhausting round-the-clock care that the parents of disabled children have to provide, I find it all too easy to sympathise with those parents who do reach breaking point, and even with the tiny number who end up taking their child's life. They are not evil; they just didn't get the help they needed.

But what both heartens and astonishes me is the ability of the vast majority of parents of disabled children to soldier on, to keep on battling the bureaucracy and fighting for a better future - almost any future - for their disabled child. And they do so because they love them as only a parent can.

As David Cameron said to me: 'You learn things about bringing up a disabled child that you never expected. You learn that there are all sorts of ways of loving someone who can't tell you that they love you.' "

Sorry i have not read the whole thread. I have someone from social services coming this morning to ask the same questions they asked last time I can totally empathise that now my daughter is 10 years old they should be fully aware of her needs ffs. Same with the dla. She gets worse every year (that gap growing from her peers ) but they still carry on sending the forms