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 watched it, although I've been on mn long enough and posting on this board long enough to know how hard it is for some to get the services and support they so desparately need.

The one thing that made me slightly uncomfortable was the talk of mothers wanting to kill their children. Although thinking about it, I can see that there are two types of mothers in this sense...

Listening to little rose cry, I can understand how a mother having to listen to that for days at a time could reach breaking point.

But for me the difference lies in the mother that kills her child but also kills herself. Perhaps it could be argued that the mother kills her child but doesn't feel she herself can go on living without the child so kills herself as well, or that the mother wants to end her own life but can't see anyone left behind who will look out for the child so takes them with her too. I don't agree with doing it but it seems to happen often enough and is quite obviously tragic.

The ones I can't get my head around though are the ones that kill their child but continue with their own lives. Such as the mother who drowned her child in the bath, drove around with her for hours and then claimed diminished responsibility. For me that is pre-meditated murder and not the actions of a mother who snapped.

The woman who did that was an alcoholic though, which I think actually puts a completely different slant on things

I have just watched it on iplayer as curiosity was getting the better of me and thought it was well balanced. I think emphasis on killings etc was just to highlight how desperate families/carers become in these situations and I thought it was shocking the single mum to the 12 yr old with cp got no help. I think it was unfair to include the woman who drowned her daughter though (the one who was convicted of murder) firstly because she had other 'issues' and also I thought it was a bit cruel to the 'devoted father' that was detailed in the news reports after the conviction.

I do hope that Rose's Mum receives some kind of counselling

Wannabe-I've always thought of it as the mother wanting to escape the life she is in (and many of us with sn children can relate to that) but then thinking there will be noone behind to look after the child with the same passion as the mother.
I shouldn't have watched this programme.Balled my eyes out at the end. The future I can't cope with at the moment (ds with ASD only 5). In my mind he will be working in a university somewhere with a sympathetic wifeand children and will just be ever so slightly odd. That's what Isee through my rose coloured specs and is all Ican cope with at the moment.

I thought it was good. Lots of emotions watching it. Utter disgust at the way Callum's brother was treated by other kids on his estate, sadness (but not surprise) that families at crisis couldn't get support. I felt Cameron needed a different sort of support than he was getting- as a lot of his movements/behaviours seemed borderline involuntary to me (he reminded me a lot of ds1 in some ways although they're supposedly opposite ends of the spectrum) - and I thought it was very sad the support he needed seemed to not exist.

I could say a lot more. Alex's school reminded me of ds1's school- ds1 is very happy now and I worry about what will happen when that is gone. The same sort of structure is needed in adulthood, there are some places starting to provide that, but of course a massive battle to get in as always.

I am pleased they talked about love though, and that they talked about it a lot.

Rose's mum expressed very well the feelings that could lead to a mum killing her child. You just lose your mind and most of your love when pushed beyond human endurance, (in her case, the shocking, shocking, endless screaming). Who can say they could live with that and not crack up? Sleep deprivation is used as torture - how can these parents expect to carry on without falling apart when they are being tortured?

I don't condone murder of disabled children and it is apalling when parents are not held accountable. Also, I lack respect for those parents who battle on like martyrs and will not let their children be looked after by others even though they know they will end up cracking up under the strain - that is misguided love and not in the child's best interests. But since so many of us struggle to get adequate help, why are social services departments and governments not held accountable too?

agree with you dd

"I lack respect for those parents who battle on like martyrs and will not let their children be looked after by others even though they know they will end up cracking up under the strain -"

I wonder where that pressure comes from? We have found respite (one night a week, with a playscheme tacked on during the holidays or when it's on a Saturday) to be very good for all of us including (very importantly) ds1. Yet I have had a few (not many) negative comments about getting respite. I ignore them of course, but I wonder whether those who battle on like martyrs are surrounded by people disapproving of outside help. I had the opposite- a lot of close support encouraging the respite- and reassuring me it would benefit ds1 too. If it's the case that there is a sense of disapproval then those people should feel guilty- I bet they're not in there getting their hands dirty.

hmmmmm yes. My mil was a bit taken aback when we said a nurse was coming into our house overnight - prob a bit sceptical that it was needed. She'd sy stuff like 'it must be awful having a stranger in the house'

CAN see how parents can get a bit precious over their dc with sn also. Like, nobody can feed / handle / interpret them as you do (eek I even used to feel like this about dh!) I was a bit like that when dd started school - was frightened of them feeding her cos of her aspirating / choking issues. Also was a bit dismayed they couldn't intuit her squeaks in the way I could (Oh that even higher pitched squeak means she'd like to sit on the potty please) But hey, you've got to try and giver people a chance to get to know...

I think Cameron might have had other things going on as well as Aspergers. He looked like he had Tourettes with the involuntary swearing and possibly some OCD behaviour with the need to run sideways.

Totally agree Saintlydame about how disapproving people can be about respite/residential. Although Cameron's parents were wonderful, dedicated people I felt that they were acting in a weirdly selfish way by not considering residential. It looked clear that what they are doing now is not working, or not working a lot of the time, so it would be a good idea to try something else. Nothing is undoable. I hate to criticise them as I thought they were great but Cameron reminded me the most of DS, again although they are supposed to be opposite end of the spectrum.

I don't really feel Cameron's parents were being selfish for not chosing residential care: there is a real problem with not getting the right, timely support to prevent your child going into residential care: I know families where it could have been avoided if help had come earlier and in more plentiful supply. Also, if the options are not good enough, and parents feel they have to leave their children in unsafe hands, that is dreadful. The woman who killed her DS son had been offered respite that made him even more distressed and aggressive, so she withdrew him as far as I remember. Social services were not held accountable. I just have an issue with parents who refuse good help.

The people who have judged our respite package have been other parents of disabled children who have not secured the same amount of respite. The system is set up so parents fight each other, not those who provide inadequate services. I've heard too many people blaming 'those who shout the loudest' for taking more respite places.

Of course any respite/residential or other service has to be good enough and I wouldn't dream of criticising parents who take the responsible decision NOT to access something unsuitable and possibly damaging. I have done the same myself with a holiday scheme that I feel is just NOT appropriate for DS in many ways. My experience though is that its not as simple as those who shout loudest when it comes to residential. You can shout as loud as you like, but if your child does not have needs that require a residential setting then you won't get it and, of course, so many parents are unwilling to shout for it as they "disapprove" on some level or feel guilty.

Respite and other services are another matter. Having got residential respite several years ago due to crisis, I felt very quickly that it should be offered as a matter of course to ALL disabled children, certainly once they get to teenage years if not before, crisis or not. We're always hearing a load of blah blah blah about things being "age appropriate" and "learning independence, self-help" etc, well being away from home for the occasional night (at least) provides just that.

oh how bizarre davros - I said the same about cameron reminding me of ds1, and of course our sons are very similar.

I felt sad that he (and his family) really really needed help to deal with his compulsions and that help didn't seem to exist. - Everyone (including cameron) was treating them as if he was acting with intention - many of his compulsions seemed pretty much out of his control to me. Those sorts of behaviours just need a very different way of managing them.

Absolutely, it really did seem involuntary although he was aware of it which also made it worse.

Yes, I thought the fact he was aware and kept saying he didn't want to behave in that way made it so obvious that he wasn't behaving intentionally. It reminded me of the book 'Strange Son' (that MrsT recommended) where the boy was very clear that his violent outbursts were involuntary but that trying to control them in fact often made them worse.

there is so little help out there for those sorts of involuntary behaviours. The only help we've had over the years was from email consultations with Donna Williams. Luckily she is good and her advice really helped and we do manage those behaviours reasonably well - in part because Donna helped us understand them (especially the involuntary nature) and gave us some clear strategies.

It just struck me watching cameron and his parents how essential (but unavailable) that help is. I really felt for them.

This programme was just mentioned on 'points of view' with people saying how good it was and that it should have been shown earlier to get a wider audience. Also said that BBC will try and repeat it.