Mumble Report post Posted June 20, 2011 Not sure if there's a thread elsewhere on this - did look but couldn't find one; apologies if there is. I've just watched the first two episodes of the new series on 4OD. It's fantastic and I'd recommend it to anyone. They've been following six children with different disabilities (including one with Autism and other difficulties who looks so much like my brother it's freaky...) from birth and they're now 10 years old. I think it's a fantastic documentary - unlike so many others recently, especially those featuring autism, it doesn't take a can't/won't approach, but takes a will try absolutely everything and can approach. I don't know how much the speech Zoe made in the last episode was scripted but everything she said about disability not being about sitting round saying you can't do things and having to go out and just be yourself was so mature - and it should be forced viewing for those parents (no - I'm not getting at anyone here...) who restrict their children because of their beliefs that their children can't this, that or the other. Really recommend that people catch up with this series available on 4OD) and watch the future episodes (Thursday night, I think). Quote Share this post Link to post Share on other sites
baddad Report post Posted June 20, 2011 Not sure if there's a thread elsewhere on this - did look but couldn't find one; apologies if there is. I've just watched the first two episodes of the new series on 4OD. It's fantastic and I'd recommend it to anyone. They've been following six children with different disabilities (including one with Autism and other difficulties who looks so much like my brother it's freaky...) from birth and they're now 10 years old. I think it's a fantastic documentary - unlike so many others recently, especially those featuring autism, it doesn't take a can't/won't approach, but takes a will try absolutely everything and can approach. I don't know how much the speech Zoe made in the last episode was scripted but everything she said about disability not being about sitting round saying you can't do things and having to go out and just be yourself was so mature - and it should be forced viewing for those parents (no - I'm not getting at anyone here...) who restrict their children because of their beliefs that their children can't this, that or the other. Really recommend that people catch up with this series available on 4OD) and watch the future episodes (Thursday night, I think). Yep - totally agree And wasn't the wee Scottish / New Zealand fella (Hamish?) great on them skis? Hope to see him competing in the winter olympics sometime. The one child who did have behaviour issues was autistic, but given the complexity and implications of his other health issues I can fully understand why the family respond as they do - and even there they don't just accept or condone it. Can't remember the girls name, but it was sooo lovely to see her get to wear knickers to school 'like her friends' and inspiring to see what she put herself through in order to do so. L&P BD Quote Share this post Link to post Share on other sites
Mumble Report post Posted June 20, 2011 Yep - totally agree And wasn't the wee Scottish / New Zealand fella (Hamish?) great on them skis? Hope to see him competing in the winter olympics sometime. Awesome! But what no-one seemed to get was that it was actually easier for him because he had less far to fall... Quote Share this post Link to post Share on other sites
baddad Report post Posted June 20, 2011 Awesome! But what no-one seemed to get was that it was actually easier for him because he had less far to fall... Yes, but if he did go over he'd be a snowball in seconds and halfway down the mountain before you could say 'snowballs' Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 20, 2011 I hadn't realised this was on!!!! (cuz I don't hardly watch tv) Have seen nearly all the previous episodes that C4 have shown over the years!!! Am gonna have to catch up! My previous thoughts were that it has been a privilege to be allowed to see into these people's lives, to see the highs and the lows and the special people involved (they are truly an inspiration - and a reason to stop moaning about our own lives for a bit) they can teach us a lot. It might sound a bit silly, but its one of the few programmes that can make me nearly cry at the highs/good times because it is so moving for so many reasons... Anyway, enough being soppy, just agree that its definitely worth a look Quote Share this post Link to post Share on other sites
bid Report post Posted June 21, 2011 Wow! Just watched the second episode on Catch-up. William and Shelby have the same sorts of difficulties as the children and young people I work with. I found it very, very humbling to be given a tiny window into their family lives. Bid Quote Share this post Link to post Share on other sites
JsMum Report post Posted June 21, 2011 Wow! Just watched the second episode on Catch-up. William and Shelby have the same sorts of difficulties as the children and young people I work with. I found it very, very humbling to be given a tiny window into their family lives. Bid Shelby couldnt access her education because there was no care staff to take her to school, she had to heave Shelby into the family car and take her younger children too, I thought that was absaloutly disgusting that she wasnt in school because no one was able to take her and like she said if any of her other children where out of school the welfare would be knocking on the door. The other thing that really upset me was that Williams new wounderful Bedroom was all raised throw charity raising, not one bit was from the goverment and that again is disgusting. I watched this on my laptop in the evening and it is a wonderful inspiring film and once J is in the right provision accessing the right support and accessing the right therapies I am going to finally relax. The children where amazing.xxx JsMumxxx Quote Share this post Link to post Share on other sites
baddad Report post Posted June 21, 2011 (edited) Shelby couldnt access her education because there was no care staff to take her to school, she had to heave Shelby into the family car and take her younger children too, I thought that was absaloutly disgusting that she wasnt in school because no one was able to take her and like she said if any of her other children where out of school the welfare would be knocking on the door. The other thing that really upset me was that Williams new wounderful Bedroom was all raised throw charity raising, not one bit was from the goverment and that again is disgusting. I watched this on my laptop in the evening and it is a wonderful inspiring film and once J is in the right provision accessing the right support and accessing the right therapies I am going to finally relax. The children where amazing.xxx JsMumxxx Hi J's mum - When you say no one was available to take Shelby to school I'm a bit confused. She was taken to school by her mum, in the family car which was probably funded by DLA and the Motability scheme(?). In fact - and with no disrespect to the mum involved in any way intended - it would be unlikely the family would have such a reliable car were Shelby not in receipt of benefits and it is in no way the 'fault' of the school that Shelby's mum has several other children and no other childcare. Yes, social services would be knocking on her door if her other children didn't attend school and asking the question 'why don't you take them in the family car?'. Different kettle of fish, of course, if Shelby lives so far away from the school that she's entitled to private transport, but that's between the LEA and Shelby's mum - not the school and Shelby's mum - who should provide, in those circumstances, transport and a chaperone... Same applies to William's wonderful new bedroom - are you saying that William doesn't receive DLA? DLA is the payment provided by Goverment to pay for the needs and adaptations disabled people require, and that would include - if you are talking about special adaptations - an appropriately modelled bedroom. There are, of course, wider issues like levels of DLA etc, but assuming higher rate of both that would be £500 per 4 week month, which however you look it it doesn't imply 'no help from the government whatsoever'... As I said, no disrespect or 'judgement' (god I get sick of typing that word in inverted commas in nearly all my posts, but needs must! ) on or about the parents, but I am disappointed to see such a positive representation of disability turned into yet another complaint about 'the system' and such positive portayals of disabled children achieving stuff hi-jacked to make them 'victims'. I didn't get the impression that any of these children were impoverished, or that they weren't receiving the benefits they were entitled to. L&P BD Edited June 21, 2011 by baddad Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 21, 2011 When you say no one was available to take Shelby to school I'm a bit confused. She was taken to school by her mum, in the family car which was probably funded by DLA and the Motability scheme(?). In fact - and with no disrespect to the mum involved in any way intended - it would be unlikely the family would have such a reliable car were Shelby not in receipt of benefits and it is in no way the 'fault' of the school that Shelby's mum has several other children and no other childcare. Yes, social services would be knocking on her door if her other children didn't attend school and asking the question 'why don't you take them in the family car?'. Different kettle of fish, of course, if Shelby lives so far away from the school that she's entitled to private transport, but that's between the LEA and Shelby's mum - not the school and Shelby's mum - who should provide, in those circumstances, transport and a chaperone... Hey, think your a bit confused here BD Here's 2 quotes from the episode Quote begins on episode 2 at 24.04 minutes and ends at 24:56 minutes "while her other siblings are at school, 10 year old Shelbie has been stuck at home due to a shortage in nursing care" "without a nurse on hand not only is Shelbie missing school but Vicky has no choice but to take Shelbie with her to pick up the other children" I don't think the problem was taking her to school, I think the problem is administering the medication she needs throughout the day while she's there. Darkshine Quote Share this post Link to post Share on other sites
bid Report post Posted June 21, 2011 (edited) That's what I understood from the programme too Darkshine. We have nurses present 24 hours a day and waking night staff at my school, which is why we can care for children with Shelby's level of complex needs (from what I could see she has a gastrostomy tube fitted for meds and presumably liquid feeds). Bid Edited June 21, 2011 by bid Quote Share this post Link to post Share on other sites
baddad Report post Posted June 21, 2011 (edited) Hey, think your a bit confused here BD Here's 2 quotes from the episode Quote begins on episode 2 at 24.04 minutes and ends at 24:56 minutes "while her other siblings are at school, 10 year old Shelbie has been stuck at home due to a shortage in nursing care" "without a nurse on hand not only is Shelbie missing school but Vicky has no choice but to take Shelbie with her to pick up the other children" I don't think the problem was taking her to school, I think the problem is administering the medication she needs throughout the day while she's there. Darkshine Fair enough... I wasn't refering to the episode (I watched it weeks ago, or if an older one years ago, and my memory's not that good!) I was refering to the way it was described in the post (my italics): Shelby couldnt access her education because there was no care staff to take her to school, she had to heave Shelby into the family car and take her younger children too, I thought that was absaloutly disgusting that she wasnt in school because no one was able to take her and like she said if any of her other children where out of school the welfare would be knocking on the door. Hence the confusion. L&P BD Edited June 21, 2011 by baddad Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 21, 2011 (edited) Fair enough... I wasn't refering to the episode (I watched it weeks ago, or if an older one years ago, and my memory's not that good!) I was refering to the way it was described in the post (my italics): Hence the confusion. L&P BD S'alright, I just thought I'd clear that bit up, I could understand your points with the rest of what you said And just cuz I'm in an annoying mood.... 4od says it was shown on the 16th of July 2011.... You can check here and anyone else who wants to give the programme a look can use it too 4od born to be different link Edited June 21, 2011 by darkshine Quote Share this post Link to post Share on other sites
baddad Report post Posted June 21, 2011 S'alright, I just thought I'd clear that bit up, I could understand your points with the rest of what you said And just cuz I'm in an annoying mood.... 4od says it was shown on the 16th of July 2011.... You can check here and anyone else who wants to give the programme a look can use it too 4od born to be different link Ahhhh... that's the latest one and I've not seen it - I was VERY busy last Thursday and didn't spot it was on. Thanks for heads up - I will check scedules to see if on 'proper' TV again soon as don't like watching on puter... Talking of TV - I caught a James May thing on catch up called 'Things you need to know'... not the best prog in the world but Ben will love it, so a heads up to anyone with curious kids (curious in the sense of wanting to know about stuff rather than 'curious' as in odd - cos all kids are the latter!)... L&P BD Quote Share this post Link to post Share on other sites
Mumble Report post Posted June 21, 2011 I caught a James May thing What you do in your own time is entirely your own business BD... Yes, Shelby's needs were about medical/nursing care at school as it looked like she was tube fed and probably had other meds delivered through a central line/similar. I'm surprised she's not at a school that has it's own nursing services on hand, but maybe that's not available where she lives. Quote Share this post Link to post Share on other sites
baddad Report post Posted June 24, 2011 (edited) Still not caught up with episode 2 but watched episode 3 last night. I've got to say I get annoyed when watching this programme too - not because there's anything wrong with the programme but because of my reaction to it! If it's a bit that has me blubbing like a baybee over how 'brave' the kids are I feel I'm being patronising, and if it's a bit showing the huge achievements these kids make against often huge obstacles I find myself getting angry for reasons that have nothing to do with the kids on the telly (or with the hugely down to earth/practical parents who are helping them overcome those obstacles) whatsoever! Watching last night's show, and Shelbie enjoying her 11th birthday and laughing and smiling and going on the rope slide at the petting farm etc I had a horrible flashback to an earlier thread on this show some years ago where someone had suggested it was 'cruel and selfish' (or whatever - don't go trawling back to quote me on it 'cos I'm not claiming 100% accuracy) for Shelbie's parents to want to keep her alive as she had no quality of life... This show, IMO, is one of the best programmes ever made on disability, and should be required (nay forced) viewing for those with black and white views on things like in-utero screening or the wider issues of eugenics and the 'value' of disabled people's lives. L&P BD Edited June 24, 2011 by baddad Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 24, 2011 I've got to say I get annoyed when watching this programme too - not because there's anything wrong with the programme but because of my reaction to it! If it's a bit that has me blubbing like a baybee over how 'brave' the kids are I feel I'm being patronising, and if it's a bit showing the huge achievements these kids make against often huge obstacles I find myself getting angry for reasons that have nothing to do with the kids on the telly (or with the hugely down to earth/practical parents who are helping them overcome those obstacles) whatsoever! I missed the one last night so am gonna have to 4od it... but will definitely catch up with it, I sort of know what you mean - though I can't describe it any better, for me its a sort of grounding feeling if you know what I mean, and its amazing the emotions/thoughts the programme triggers with wider issues. This show, IMO, is one of the best programmes ever made on disability, and should be required (nay forced) viewing for those with black and white views on things like in-utero screening or the wider issues of eugenics and the 'value' of disabled people's lives. L&P BD I totally agree, although I think everyone full stop should watch it for a multitude of reasons; especially awareness - because there are a lot of ignorant people out there who could do with a little education on matters they either don't understand or purposefully blinker themselves against. Quote Share this post Link to post Share on other sites
bid Report post Posted June 24, 2011 This show, IMO, is one of the best programmes ever made on disability, and should be required (nay forced) viewing for those with black and white views on things like in-utero screening or the wider issues of eugenics and the 'value' of disabled people's lives. Completely agree, BD...but sadly I think there is a great raft of people who still wouldn't understand Bid Quote Share this post Link to post Share on other sites
Mumble Report post Posted June 24, 2011 Completely agree, BD...but sadly I think there is a great raft of people who still wouldn't understand I do think it's more complex than this and you (not you specifically, the wider 'you') do need to look at the bigger picture, family dynamics etc. Yes these are fantastic down to earth parents who would clearly do anything for their children, but unfortunatly not all parents are like that or in a position to fight for their children and provide in the same way. It's not necessarily just financial but due to a whole host of reasons. I remember watching a programme recently about babies born at 23 weeks. It was something like 1 in 100 will survive, and of those "one's", 1 in 100 will not have a profound disability. The argument was then that should we be putting the 9,999 babies through extreme pain and invasive treatment when they will either not survive or be faced with profound disability for the sake of the 1 baby who will develop normally. In Holland they made the decision not to treat babies at this age because of these 'odds' which I understand people will have different views on and I suspect there is no right answer - I would really struggle to work in a field like medical ethics. Quote Share this post Link to post Share on other sites
bid Report post Posted June 24, 2011 (edited) Again, absolutely agree Mumble...and your point echoes the thread I started about the conference my DH attended a few months ago about the huge number of children now moving into the education system who were very premature and as a consequence have the most complex of special needs : http://www.asd-forum.org.uk/forum/Index.php?/topic/26382-new-generation-of-complex-learning-difficulties-and-disabilities/page__p__305030__fromsearch__1#entry305030 What I meant was the other angle that there are very many people who still wouldn't recognise the joy and quality of life possible for many profoundly disabled people because they are not able to see past their own prejudices and fear, however many films they were made to watch. Bid Edited June 24, 2011 by bid Quote Share this post Link to post Share on other sites
Mumble Report post Posted June 24, 2011 What I meant was the other angle that there are very many people who still wouldn't recognise the joy and quality of life possible for many profoundly disabled people because they are not able to see past their own prejudices and fear, however many films they were made to watch. I find a large mallet useful in such circumstances. Quote Share this post Link to post Share on other sites
baddad Report post Posted June 24, 2011 (edited) I do think it's more complex than this and you (not you specifically, the wider 'you') do need to look at the bigger picture, family dynamics etc. Yes these are fantastic down to earth parents who would clearly do anything for their children, but unfortunatly not all parents are like that or in a position to fight for their children and provide in the same way. It's not necessarily just financial but due to a whole host of reasons. I remember watching a programme recently about babies born at 23 weeks. It was something like 1 in 100 will survive, and of those "one's", 1 in 100 will not have a profound disability. The argument was then that should we be putting the 9,999 babies through extreme pain and invasive treatment when they will either not survive or be faced with profound disability for the sake of the 1 baby who will develop normally. In Holland they made the decision not to treat babies at this age because of these 'odds' which I understand people will have different views on and I suspect there is no right answer - I would really struggle to work in a field like medical ethics. Yes, complex and I do agree with you that there are all sorts of additional 'ethical' rights and wrongs that have to be taken into consideration... Far more controversially, a similar debate arose in professional circles with the introduction of cervical cancer 'vaccination' in teenage girls. The reality is that the very very tiny number of girls affected by the type of cancer this screens for and the costs of the screening really are completely incompatible, but the very effective 'what if it was YOUR child' marketing strategy of the drug companies made that a moot point. Hearing Shelbie's mum's unsentimental and practical views on the subject of organ donation in relation to Shelbie showed yet again that the parents in this programme are also pretty amazing. As you say, very very difficult ethical choices. L&P BD Edited June 24, 2011 by baddad Quote Share this post Link to post Share on other sites
