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 just watched it and thought it was really good tbh.
Did you notice how Cameron's mum avoided eye contact with him when he was agitated and looked scared of him? He reminded me so much of DS, except that he could speak. I think Rosa Monckton was doing his parents a favour by trying to get them to seriously consider something (residential) they have dismissed, possibly based on misconceptions. I have been really scared of my DS at times and seriously concerned for everyone's saftey, I don't think you can continue like that for long, something will probably have to change. Inclusion should be ONE option, not a substitute for good special settings, respite and longer term residential. What worries me is Inclusion at all costs which I how I see things going.
Meltedmarsbars, I've had LOTS of help and support from other parents but there are still those I described as well.

I've just watched it & still mopping the tears.
I thought it was a really good honest portrayal.
I think Rosa Monkton was good & about bloody time somebody gave an honest account of the battle for support & services that we all go through.

thanks beingbusymum ill investigate it when ds in bed, hes on a mission to destroy the house today so better not!!!

It sounds like there is a real need for residential settings - our "normal" kids will eventually leave the family home and just come back for weekends etc, so why do we have to be day and night carers for our disabled children until we die?

Absolutely meltedmarsbars! And I've known many parents who won't accept weekend/holiday clubs, overnight respite etc believe it or not. When our kids are younger it is very common to feel that "only I can do it properly, only I can care/love enough, only I should do it" etc OR only someone I have chosen, prepared and then have to manage. Once people accept that THEY don't have to do everything then I think their relationship with their child progresses. it is not giving up, no-one should feel guilty and it is usually GOOD for the disabled child, never mind the rest of the family. Then, of course, you get people who desperately want such services and can't get them, grrrr.

There is a child in ds1's class who has had bricks thrown at him on his estate

Agree about resi. DS1 now has one night a week in a residential setting and loves it. The nights alternate, he knows exactly when he is going. He packs his suitcase (usually he puts in a blanket, his wash bag and swimming trunks- nothing else ) and it is another setting in which he can learn - and indeed does. The people who run it are very good indeed, keep him busy (e.g. swimming) and it means ds2 and ds3 get to go off and do entirely normal things. I usually meet them from school that day for example. It has also widened his world- a big issue when you are severely disabled imo.

Agree btw that inclusion should only be one option. It's one that usually excludes ds1 (and always will because he can't change to not being a runner for example, or not wanting to do his own thing all the time), and special settings are essential for his wellbeing.

a good counterpoint might have been interviewing a family who does get adequate respite, showing how life can go on and how other siblings can be accomodated. to say - the answer is this: and this is this family. they have a disabled child but life is good. sort of touched on with the camerons but they arent "normal" people...

i feel my autistic/SLD son has a good package direct payments and once a month weekend residential respite and life is as good as it can be for him and his sisters. . yes i could do with more sleep and there have been dark times...

but his needs/wants are now largely predictable (as appeared to be so for say the boy with severe CP who was shown) and so manageable - with the right amount of respite and making sure other sibling has support.

i didnt agree with her statement saying she could understand why mothers could kill their children - i dont.

i can understand moments of despair - and yes people need respite and that needs to be addressed (but as others said, some people wont consider it/feel taking overnight respite is "failing"...)

but as RM said herself - she saw the light and stopped herself at the crucial moment.

i dont think it is ever acceptable or understandable to kill your child.

you can always walk away...hand the child to someone else.

cestlavie a good point. Our family life is pretty good at the moment, but ds1 is happy (so relatively calm) and we get a good respite package. Of course ds1 is happy because he has a school (SLD/PMLD) that can handle him. I was much more stressed when he spent a few terms in mainstream as he was constantly 'a problem' for the school.

Providing adequate services isn't rocket science, but there needs to be a willingness from the pros to understand a family's needs and of course a family has to accept what is offered (which again means there needs to be something suitable to offer).

Cestlavielife, the point is that sometimes we get so depressed and bogged down that we can't walk away, and there is no one to hand the child to! There is sometimes no sodding help at all!!

No-one in their right mind would kill their child, but the overwhelming depression of having a disabled child with no help, nowhere to turn, so future, can change one's outlook so much that one is not operating within a normal mindset. It is completely understandable. That does not make it right, but understandable to me.

It shows how little physical and mental help there is for the carers and families.

Cesta, I understand what youa re saying, we have good medical & educational services for our ds2 BUT, i think the point the programme made very well was that these services are not handed out freely.
When you are at your lowest, when your child & family are struggling is when you ahve to battle with all the various depts to get that package in place.
Its what happens to those families/parents that can't find that fight or don't have the ability to keep battling that is scary.

I think by showing how well it CAN work may of diluted the message of the programme.
For me that message was that the system needs to change & work better at supporting families.
It was also a big eye opener to anyone not used to the sn world that we don't get things handed to us on a plate.

?

Disability hate crimes are illegal. In April 2005 the law was changed by section 146 of the Criminal Justice Act 2003 (CJA).This imposed a duty upon courts to increase the sentence for any offence (for example, assault or criminal damage) aggravated by
hostility based on the victim?s disability (or presumed disability).
See www.cps.gov.uk/publications/prosecution/disability.html

Awareness of this is probably quite low even amongst coppers who require training on these issues to understand the scope of their powers. So, it is getting the police to enforce the law and those in the community to understand their rights that is key.

There are always those in society prepared to scapegoat, target, pick on the the vulnerable, be that people of a different race, sexual persuasion or disability. Ignorance doesn't breed tolerance and this is compunded by a culture of poor taste and sensationalist modern media, a society in which comedians think its acceptable to make cheap jokes about disability and an 'I'm alright Jack' mentality which predominates. Add poor police training and inadequate community resources and support....

These things need to change. Punching a view ill-educated young idiots won't change a prevailing 'bullying' culture in which difference is not tolerated

Hi, sorry to crash your thread.I was looking for some of youwho had posted on a previous thread regarding cerebal palsy.One of my twins has just been diagnosed.He is 17 months and i cannot see light at the end of the tunnel.i Was hoping for some advice if any of you have any experience.He has low tone in his neck and trunk, and a stiff left arm.
Hope someone can help
twinkle

Hi Twinkle, there is always so much to take in around diagnosis. I cannot help myself with the information you would like but may I suggest you post your own thread as you may miss the people you want hidden in here.
First click on the special needs:children bit at the top of this post, and just above the list of posts there is a phrase to click on something like to make a new post. HTH

Hi Angry (pretty sure I know who you are!) Yes DH and I separated earlier this year. Davros - haven't had an email. I've changed my home one but the work one I think you had should still work. Or is yours still the same?

Mine is the same HITC (a Yahoo one if you're not sure), would love to hear from you. Sorry to hear about you and your DH splitting.

I thought it was a good programme but wish it could have included more like the fights many of us have with our LEAs just to get 'appropriate' schooling for our children.

I agree vjg (fights for everything) but on the whole the program was balanced and real. I really felt for cameron and his parents - ( Davros I avoid eye contact with my son when he is stuck in a certain control pattern - it will inflame him more to look at him), but was shocked at the absence (did I hear that right?) of respite for a 12 year old boy needing 24 hour care.
I recently attended a course for parents of sn children (all severity/type of need) and was shocked by what I heard there too - how close so many had come to an edge- despair, social exclusion, physical breakdown, exhaustion ( universal!) begging ss for help (without getting anywhere, marriages broken ) Everyone had had battles - different battles but it was shocking how much extra was put on each family by the lack of or poor services!

Just watched the programme and was quite impressed by it, mainkly bnecause it made dp sit and watch and he can see how our ds is like Cameron and will maybe need resi care when older.

For me it highlighted many of the figts we have had, extra nappies, violence in the home and dd being bullied for having a sn brother.

It didn't offer much in the way of support though and I think that is because the services offered vary so much around the country.

Hopefully it will make others especially those in power realise how demanding it is for carers and parents of SN kids. If we stopped caring then what would they do with the millions of disabled kids???

God, I am really sorry HITC, what a shame xx If you ever fancy meeting up, give me a bell. I do not have your email anymore, but if you still have mine, please feel free to email me (if you want to that is!)

I still ahve not managed to watch the program