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

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

(145 Posts)

By Thu 05-Nov-09 12:13:09 Add message | Report | Contact poster

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.

Add message | Report | Contact poster By Sun 15-Nov-09 17:32:13

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.

Add message | Report | Contact poster By Sat 14-Nov-09 08:44:29

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.

Add message | Report | Contact poster By Fri 13-Nov-09 22:15:17

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.

Add message | Report | Contact poster By Fri 13-Nov-09 22:02:31

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

Add message | Report | Contact poster By Fri 13-Nov-09 19:31:36

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.

Add message | Report | Contact poster By Fri 13-Nov-09 16:08:04

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.

Add message | Report | Contact poster By Fri 13-Nov-09 15:46:44

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.

Add message | Report | Contact poster By Fri 13-Nov-09 15:24:07

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.

Add message | Report | Contact poster By Fri 13-Nov-09 15:04:47

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.

Add message | Report | Contact poster By Fri 13-Nov-09 13:24:23

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...

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