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.

I won't watch as We use tv as a time to relax, I know all about the hard bit, so don't need to see it on tv, shame it will probally add fuel to the haters.

I was contacted to appear on this programme back in April as they were looking for someone who had continued a pregnancy after a dx of DS. They never got back to me probably because I was too positive and upbeat about my pregnancy and ds's disability . Not sure if I'll be watching.

Well put Davros. I agree with you. I'll be taping it to watch.

Hopefully they will also have some sort of information about how us parents can deal with the hardships. Specially difficult behaviour, which is what I find the hardest.

I agree about TV being for relaxation but now and then I put myself in a position where I feel I must watch something if I've informed others that it is on. It would be odd to tell other people about it and not watch myself. Normally I steer well clear as I too know all about the difficulties already but it could be worth people who don't know about it watching, but I wonder why they would?

Mojolost, have you heard of the Challenging Behaviour Foundation? They are very good and might be useful for you. HTH.

I have given up with the ones who don't get it as I think if they can't see it now they never will.

I think the danger of an overly negative picture of disability is that that's the one that is out there already (and drives all the 'brave' 'saintly' crap that comes with being the mother of a disabled child).

The REALITY I think is incredibly complex - on the one hand day to day life is more stressful that I could ever have imagined and I often want to scream, on the other hand my son is happy, with support (the big one) has access to a great life, and his disability has actually brought me great happiness in the form of confidence and being forced to grow up and a sense of community etc etc. All at a price granted.

And I'm not sure you can capture that on TV because it either looks awful, or the love just looks one sided (mother to child) and you don't see what is coming back.

I'm also aware that I am happier than many friends who have supposedly everything. And I think that comes in part from ds1's disability (which makes me feel a bit guilty!) - well not from the disability, but from the perspective it gives I guess and the challenge.

I'm also aware that I'm happier since I realised that ds1 will always be severely disabled and I guess I had permission to stop trying to do something before it was too late.

I think the problem with ASD is that there is an attempt to make it all the same and refuse to acknowledge the very great differences within it. Those without a voice lose out the most with this approach. Mind you I am happier since I decided to forget the NAS (who I think have completely lost the plot tbh) and have concentrated on interacting with those working with learning disabilities rather than just ASD.

I think The Black Balloon did pretty well for a film tbh- in capturing the complexity.

People make things up to suit themselves anyway - If it was a Pollyanna program, they would say 'Ooh look at those lovely little Pollyannas, I couldn't do it of course because I'm not like that...

can't say I like the term "pollyanna's" can't see what is wrong in seeing the positives in life. sure it can be bloody hard but it is worth it

I'm not sure about focussing on the hardships tbh. Every day we have hardships (ds1 freaks because YouTube has ground to a halt, things get smashed, I have to drop and run) and lovely moments (cuddle in bed). It's like anything to do with children a mix of good and bad.

The issues around hardships for me are more to do with lack of choice. So if I wanted to work after 3.30pm I couldn't because there is no out of school childcare. If I want to work in the school holidays I can't because there is no holiday care I can buy in. If I employ someone to look after ds1 there's a big chance they won't be up to it. If I need to take the others to the dentist I can't if I have ds1 in tow and so on and so forth.

Those are all fixable hardships with money though. It's not so much the disability that's an issue, it's the services/support.

I know, it will never reflect the "reality" either way and cause an opposite reaction. Ho hum! I will tape and watch anyway.

Hi all
Whats a Pollyanna?

I think cyberseraphim has a good point: people tend to take away whatever conforms to their ideas. And it would be difficult to give a balanced picture anyway within the confines of such a programme. Does anyone know what disabilities will be featured?

Won't be watching; just at the moment we do not feel the need for any counterbalancing of pollyannaism.

Pollyanna was a girl in a book who was always 'Glad' no matter what happened. Actually it was not that a bad a book (for young children) and I have not really come across anyone in real life or on the internet (who has an SN child) who does not know that there are two sides to the equation but it's more an attitude that others try to put on you by going on about how wonderful and fulfilling it must be to dedicate your life to a little 'cripple child' while actually they are thinking how horrible it all is. The parent already knows about the downsides but it can be a life changing experience and like Saintly, I see so many around me who don't have the additional responsibilites we have but who are worn out by bitterness and envy.

I think that works well for wheelchair users starlight. Not sure the social model works so well for conditions like autism/ learning dusabimities. If we cleared the world of every person who didn't understand severe autism life we'd be part way there : o

Further to cybers post. If we were offered the magic wand and for ds1's disability to disappear / well yes of course we'd take it as he could have a life entirely of his choosing. It would make our lives much easier. I don't think it would make them any happier though and I'm not sure it would even make ds1's any happier either (although that does rely on him always being able to access good quality support).

most times it is not dd's cp that causes the problems, or her, it is other people and the big bad world.
life would be lovely if we could go out with out people staring, fighting for every thing and putting up with peoples prejudices, they are the things that wear me down, not dd

Distance yourself from NT families for a while - that can help. Be ruthless in only seeing people who 'get it' while you come to terms with it. And recognize that shitty feelings are normal so roll with them and know they'll pass.

saintly, I am so with you on the 'Black Balloon' model of life. That film says it all - the highs and the deep lows, the bonkers situations, the joy in unexpected things....and, of course, shit on the carpet.

I will certainly be watching Rosa Monckton's film - I hope it makes a strong political point about how much extra help we need that we don't get. Isn't she Dominic Lawson's wife and aren't they both linked with David Cameron? They could be people with influence should the Tories get in (God forbid).

Apparently David Cameron cries in the programme.
I dont think I will watch it.

The "not the disability but the outside world" doesn't work when the disability involves physical pain either. At least I can't think of anything the outside world could do to make being in pain pleasant or the norm or whatever.

But I also worry about the idea that is becoming pervasive that with better services and an improvement in peoples' attitudes everything would be fine and dandy and we'd all live happily ever after. It would be great to have those things but they would NOT change DS's needs and the fact that HE (not society or anyone else) has coped much better and been happier with medication, and ditto going to a great residential school as we cannot live with him at home fulltime. Having a 14 year old with severe ASD, Challenging Behaviour, OCD, anxiety etc are the facts of our life regardless of outside influences. But we still love and cherish him and feel grateful for the wonderful boy he is (yes, we had a good half term!)

Oh yes, you are very right, starlight, proper support can make life far more bearable