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 will confess that my emotion when meeting a chiodles severe is usually guilt that my child isn't there and that's becuase I have an internal locus of contro9l- its all my fault.

When I meet children moresevere I feel guilty that I haven't managed much more with the boys becuase the other children have so much less of a headstart.

Which now I express that for the first time is rpetty bollocks and self centred.

oh we all compare.. I do with dd. sometimes she is the able one, sometimes not.
surely that is normal nt or not.

The competitiveness I've come up against is along the lines of

• not sharing details of good professionals, e.g. SALT
• not passing on other information that could help other people e.g. holiday schemes, support groups

both the above in case there isn't room for their child or in case service gets over subscribed

• claiming that their DD/S should not be in the same classroom or social group as other kids they judge to be worse behaved, less verbal etc
• believing their DD/S has made progress that no-one else can see or see very much less
• making claims for 1,000,000 interventions that most people choose not to attempt for whatever reason and making the assumption that others don't try those million interventions because they can't be bothered etc

These are the real horrors I'm describing mind, I also know LOTS of other lovely, sharing, kind parents too!

I've confessed on here before of trying to think of someone worse off than myself as it made me feel better. At the time (some years ago) I could only come up with 2 people from my very wide network. I did this privately, to myself and they probably would have disagreed with me, but it made me feel a little better at the time

I've also had those conversations with hopeful people whose children are much younger than my DS "how is he? Can he speak? What does he do?" etc etc. I have learned to tread very carefully so as not to crush anyone who would see our situations as their worst nightmare although I consider it to be pretty damn wonderful at the moment (uh oh, heading for a fall!)

oh Davros I HATE someone expectantly asking me 'so does he speak now?' because - well - how can I answer? "No, but I'm sure your child will". "No but it isn't such a big thing by the time your child gets to 10". I usually mutter and run.

Yes, it is a minefield. How can you make someone understand that its OK, especially when you see the look of expectancy turn to horror?

I have deliberate;ly not told anyone about the AS unit we are applying for as it is not well known but there are @ 100 kids who could go for 12 places- is that really competitive? I just see it as last chance saloon and am desperate. I did tell someonre and shewas on the phone to the LEa in under 2 minutes, daren't risk it again

I think that is fair enough Peachy, why would you deliberately shoot yourself in the foot? I don't understand why some parents won't share info about professionals, pass on possible work to tutors etc when I think it means they will have more work, better experience and more likely to keep doing what they are doing rathe than give up through lack of work iyswim.

No me neither- I like doing all that stuff, and to be fair a lot of it goes on at the rugby group we go to.

heartinthecountry, have you split up with your dh? (you do know me btw, you have been round my house and are welcome anytime...)

Davros, I have found the same as you too wrt competitive parents.

HITC, have tried to email you, hope it gets through.

Another interesting programme tonight, Horizon on BBC2 at 9.30pm is called "Why Do We Talk?"

Well have just watched it. Why on earth it was on so late I don't know - now I have to go to bed with all the issues it raised running round and round my head.

Don't know what I thought really. At the beginning I was thinking 'this is good, it's real, raises important issues etc.' The conversations with the brother of the boy who has cerebral palsy and with Rosa Moncton's daughter really hit home - we've touched on similar subjects with DS1, who is much younger, but feels that same mixture of love, regret and responsibility towards DS2. Then as the programme went on I got rather irritated by its unrelenting gloominess - actually I think it was Rosa M's gloominess that got me down. And I could not bear the part where they were all talking about Cameron when he was (I think) in the room and was obviously so desperately unhappy about his own behaviour.

It made me depressed anyway. Will be interested to hear what others think.

sphil, I agree with most of your post. I didn't like the talking about Cameron while he was in the room either - found his story very sad, especially the bit about wanting a happy-ever-after family and wanting to be cute again . Made me, as these things always do, worry and wonder about the future.

It definitely depressed me, because the situation is depressing - I wonder what percentage of families get everything they need to help them, or enough anyway? I know about 2 families, one on-line, one in RL. I think it had to be gloomy or it would have been a glossing-over documentary, really. I guess I still prefer (for autism) the one that saintlydamersturnip likes, Autism Every Day, I think. I guess that had the balance of sadness and love right in that it didn't leave me feeling like drinking a whole bottle of wine at the end!

However, I just looked at the Telly Addicts thread and saw one poster saying 'is that what life is really like?' and I guess if it's opened people's eyes to the realities that are some people's lives, it's got to be a good thing. Crap it was on so late though. Tired and unable to sleep now, like you sphil!

i missed but it but just found it on bbc iplayer www.bbc.co.uk/iplayer/episode/b00ntmbf/When_a_Mothers_Love_is_Not_Enough/ if anyone else missed it and wats to watch it

i thought this was quite good having watched it this morning on iplayer, at least it wasnt another programme full of families who do cope and teenagers looking for jobs etc, it showed the other end of the scale if that makes sense, i hated that autism and me programme the other month. i agree on the taling about cameron while he was in the room, really sad. Its nice to actually be showing people that so many families are pushed to their limit and siblings too, definately will encourage my mother to watch it!!!

what is the autism everyday one people are talking about, ive not seen that?

I was so saddened by the whole program. The mother who said that the only reason she and her disabled child were still alive was because she has the responsibility of two other children spoke volumes for me and no doubt for many others.

I agree that there is just no hope, no reassurance, no clear pathway for many parents with disabled children.

I have found many agencies downright obstructive. The nappy scenario is laughable but SO TRUE!!!!! Ridiculous to have to argue for more than three nappies per day, but we all have to do it!

Davros, I'm sorry you have had so little help from other parents - in our case they have been without fail the most helpful source of advice and information. As for not passing on playscheme info, my take on it is that if we all apply en masse then SS will realise how much demand is there, and fund more places.

will watch on iplayer. Was tucked up in bed last night.

me too

thought it was a very good program. watched last night

could empathise with lots of the comments on there. Took me back to some dark times. Also felt sinking dread / fear of future stuff - the young lad who described himself as full time carer particularly struck a chord of 'god I hope that's not ds in a few years'

But boiling it all down to lack of support - I do consider ourselves somewhat better off than a lot of the families featured there. For us, things have drastically improved over the last few months getting regular night respite sorted.

Makes me angry that everything is a fight. If you are articulate, persistent and know where and to who to make the right noises you will get the support. A family less so but with the same, if not greater, level of need may not.

Agree with cameron about the disparity of services and the not knowing what yr entitlements are and how to go about accessing. Like mmm, we have benefitted mostly from information from other parents who have trodden path before us. Am grateful for that - which is why I always attempt to pass on / share info here and in rl

Must admit tho, I did come over a bit dismissive of the sn and angry at one point. That was at the reference to the mother who couldn't apparantly couldn't cope with her 4 yo who needed splints and drowned her in the bath. Sorry. I accept I don't know the full facts of the case, I might be being kneejerk and its not my place to make judgements but I cannot reconcile her case alongside the others featured. Prob because the child was so young as well. Just fucking tragic. Wished the mother had got more support, particularly with her own feelings of shame and in coming to terms with her dc's disability but would that have changed the outcome? Ugh just horrible speculation whatever

Haven't watched yet. I have a SW coming here for a meeting at 10am, so will try to iplayer it when she goes.

I think this was the programme that ages ago on the MN media request bit they asked for families of children with SN. (I spoke to someone, and they mentioned that Rosa Monckton was 'doing' it)

I wept frequently throughout this documentary. Little Rose looked like she was in incredible pain, but I completely related to the way her - very articulate - mother seemed to have run out of empathy for her daughter. It could have been me in the dark days.

I'm glad Rosa Monckton was brave enough to spill the beans on how bad things can get - I thought it was brutally honest and she was a lovely, warm person. I did get the impression that she has never quite got over having a disabled child, when her life should have been so charmed. Maybe it's easier to come to terms with disability when you haven't got so far to fall. It looks like having a disabled child has absolutely been the making of her, but maybe she doesn't see it like that.

I did worry about the things she said in front of Cameron though and her enthusiasm for residential care when he hadn't even had the psychological help he needed and they so obviously wanted him at home. I think her family must have political influence and I do hope the Tories don't go back down the route of putting disabled children in institutions as they seem so anti-inclusion

I thought it was very good, and maybe just maybe it will change something in the benefits system, so it's not all such a fight. The bit where I actually wanted to kill was hearing about Asher Nardone, and how ON TOP OF EVERYTHING ELSE SHE HAS TO DEAL with, the little fucker kids on her estate go around calling her disabled child names, throwing bricks through her windows, making her life a misery for many years. As my husband said, the police in that area want to hang their heads in shame for doing nothing. In the old days, a good old bruiser copper would have taken one of those little shits down an alley for an hour or two and he and his feral siblings would have learnt a lesson. Maybe that's not right, but there's nothing else been put in its place to stop ignorant, hooligan teens from hounding families like Asher's, or like the poor poor mum who set fire to herself and her daughter. Anyone care to join me in asking that DISABLITY HATE crimes are made as illegal and despised as RACE HATE crimes??