C4 'born to be different'

[baddad]

Spotted earlier - C4 has 'born to be different' on tonight - the periodic documentary charting the lives of a group of disable children. Starts at 9.00 for anyone interested.

 

L&P

 

BD

[Paula]

fantastic program it realy is.

 

 

I fealt very humbled after watching last nights episode.I watched it last time it was on and it was great to catch up with the children featured.

[lisac]

I caught about half of it last night, ive followed it from the start. dear Shelby, i really like her mum, but still cant understand why she continues to have children when she knows they have a 50/50 ( if i remember rightly) chance of having this disability, and doesnt believe in abortion

Really really nice parents and grandparents

[lisac]

Sorry, ive just re read what ive typed and it sounds quite callous. I really didnt mean it that way. What I meant was, would you knowingly put a child through all that pain, if you knew you was a carrier of the gene ?

[baddad]

I caught about half of it last night, ive followed it from the start. dear Shelby, i really like her mum, but still cant understand why she continues to have children when she knows they have a 50/50 ( if i remember rightly) chance of having this disability, and doesnt believe in abortion

Really really nice parents and grandparents

 

Hi -

 

I think the mum said it best - no matter what an outsider's view might be her child has lived/is living a happy and fulfilled life. It's a similar situation to that being discussed in the 'genetic link' thread -we can only make 'judgements' on our view of what is/isn't a 'good' life - which may not have any relevence whatsoever to the other person.

Parents/grandparents - I agree, but was a little bit diappointed to hear the grandmother saying of the autistic child that the 'complete child' was 'still inside' (or words to that effect).

Her grandson was/is the complete child, he's just a disabled child, so his 'complete' isn't the same as her expectations of 'complete'.

Really nice too to see that no matter what the disabilities were or the long term prognosis the parents all seemed (I missed the begining, so if this is wrong in that regard please forgive me) determined to ensure that their children maximised their indepence/abilities. I think that must be incredibly hard for parents who know their child's condition will mean they're unlikely to reach adulthood, but so important for their quality of life while they are alive.

 

great stuff - and a refreshing change from the totally insensitive and exploitative Channel 5 shows that clutter up the schedules.

 

L&P

 

BD

[lisac]

Hi BD - yes i hear that, and she is right. Lets hope Shelby would agree. The mum is very brave. Is it fair on potential children to knowingly give them this disability and pain though?

[baddad]

Hi BD - yes i hear that, and she is right. Lets hope Shelby would agree. The mum is very brave. Is it fair on potential children to knowingly give them this disability and pain though?

I think it's still the same issue - Shelby has lived a happy/fulfilled life. If she has another child with this disability she/he will live a happy and fulfilled life. Your 'take' on shelby's life is not relevent to shelby's life - Is she in pain? Does she consider herself disabled? I don't know? It may be that for shelby a hug in the morning from mum makes her the happiest child on the planet for the rest of the day. Shelby could look at your life (or mine, or anyone elses) and pity us - purely and simply because we can never know the absolute joy she feels on getting her cuddle from mum in the morning... <'> <'>

I don't think the mum is 'brave' (and suspect she wouldn't either) though - i just think she's doin' the do and making a great job of it

 

And if shelby can somehow read this, and can somehow look at my life and is feeling sorry for me, I'd just like to tell her she doesn't need to: Whatever it may look like to her I'm actually quite enjoying it... mostly...

 

L&P

 

BD

 

[lisac]

yes i agree. What i am asking though is, is it fair to pass on a hereditary condition to another child you may have in the future? when i said she was brave , i meant that, she is brave to potentially do it all over again with another child, most couldnt.

[lisac]

shelby has lived a happy/fulfilled life, how do you measure it? how do you know she has lived a happy/fulfilled life? because she smiles? because the mum says so? you've often said parents might not always know whats best. so we are assuming again, surely?

Edited April 29, 2009 by lisac

[Tempus]

shelby has lived a happy/fulfilled life, how do you measure it? how do you know she has lived a happy/fulfilled life? because she smiles? because the mum says so? you've often said parents dont always know whats best. so we are assuming again, surely?

You can only judge based on what you see and experience if you haven't got the condition/disability yourself. If there is no evidence to the contrary then I think it is better to make the assumption that she has lived a happy/fulfilled life rather than being unhappy with it -- and this is also more logical; she has never experienced life in any other way, so why would what she has make her unhappy?

[baddad]

shelby has lived a happy/fulfilled life, how do you measure it? how do you know she has lived a happy/fulfilled life? because she smiles? because the mum says so? you've often said parents might not always know whats best. so we are assuming again, surely?

 

Sorry, I thought you had said you agreed with the mother?

Hi BD - yes i hear that, and she is right.

 

I have (often?) said that parents don't neccesarily know what's best for their kids - but i think most parents could make an educated guess about whether their child's life was wracked with so much pain and misery that they would be better off dead! Not every parent, (there was a court case recently focussing on exactly this issue) but most. Certainly, i think that the parent of a physically handicapped child is in a far better position to make that judgement than someone who knows nothing about that disability.

Generally, when i have said that parents don't necessarily know what is best for their children I have been speaking about things like psychological imperatives like projection' and 'denial', which is a completely different thing to recognising signs of physical pain, which i assume if constant would be something that the medical professionals would be advising the mother about if they were an issue.

 

If you genuinely feel that shelby and/or children like her would be better off dead or unborn, that is something you should maybe take up with medical professionals or the parents of a child with similar disabilities?

Over the past few days I've started to feel more than a bit 'pursued' around here(?) i'm gonna bow out of this one, because i'm starting to wonder where this is leading... i suspect it might be somewhere along the lines of 'so it's okay for a mother to assume that her child isn't showing signs of prolonged and acute physical distress but not for another mother to assume that her child beating up other children is an 'autistic meltdown'. If that is where you're heading, I'm perfectly happy to say that pretty much sums up my views...

I can't think of any other reason why a child would appear to be in constant, physical pain other than because they were in constant physical pain. I can think of loads of reasons why a child might be aggressive or badly behaved, none of which have anything to do with autism. I'm sure everybody else can too, because the boards are full of posts detailing exactly those kinds of behaviours enacted by neurotypical children who are not having autistic meltdowns.

 

L&P

 

BD

Edited April 29, 2009 by baddad

[lisac]

oh come on baddad you cant wind everyone up and then clear off ! ,x

[Mumble]

i really like her mum, but still cant understand why she continues to have children when she knows they have a 50/50 ( if i remember rightly) chance of having this disability

... and I can't understand why you choose tails when flipping a coin when there's a 50/50 chance it will be heads - I mean, those odds are horrendous. As far as I'm concerned, we can't know everything about this case from the approximate say 15 minute screen time she received and so it would be wrong to make any judgement about her case specifically.

 

oh come on baddad you cant wind everyone up and then clear off ! ,x

Hasn't wound me up...

 

[forbsay]

I read a review in a paper about this programme today.

 

I have complained about it.

 

 

[NobbyNobbs]

I read a review in a paper about this programme today.

 

I have complained about it.

the review or the programme?

 

i watched it, and thought it was very good. not overly soppy, but not cold and clinical. i would've liked a little more background into the medical side, but that might be because i haven't seen any of the earlier shows.

[Paula]

Ive worked with sevearly disabled children, children who to some at first glance can appear to have no quaility of life kids in wheel chaires who have life limiting conditions hooked up to all sorts of machenes.

 

I too would think maybe theyd be better of dead they cant get anything out of life there just an empty shell.How wrong i was.I spent a year takieng kids like this to and from specialists schools and they did get something out of life they would respond to chatter to al sorts of stuf.One child who was deaf and blind amongst other physical disabilites would light up when the bus went go over speed bumps smileing and makeing sounds of joy.They all had personalites distinct to them.Who was i to say youre life is not as worthy as mine.I realised how naieve id been.

 

 

 

So what shelbys mum has her hands realy full with all her kids.I dont think i could do it she must be shattered.But then if someone had said to me 16 years ago id be doing what i do now copeing with my son and all the problems hes had i wouldnt have thought i could do it.

 

I think the phrase that someone used a grandma to one of the kids william i think it was sums it all up.You play the hand that god deals you.

 

 

I was in tears watching the program not because i was sad but because it makes you realise how crazy we all are fussing over clothes and size and haire and makeup and all the trivia...............whingeing and moaning over little things when in reality i for one am blessed.

[bid]

Ive worked with sevearly disabled children, children who to some at first glance can appear to have no quaility of life kids in wheel chaires who have life limiting conditions hooked up to all sorts of machenes.

 

I too would think maybe theyd be better of dead they cant get anything out of life there just an empty shell.How wrong i was.I spent a year takieng kids like this to and from specialists schools and they did get something out of life they would respond to chatter to al sorts of stuf.One child who was deaf and blind amongst other physical disabilites would light up when the bus went go over speed bumps smileing and makeing sounds of joy.They all had personalites distinct to them.Who was i to say youre life is not as worthy as mine.I realised how naieve id been.

 

 

 

So what shelbys mum has her hands realy full with all her kids.I dont think i could do it she must be shattered.But then if someone had said to me 16 years ago id be doing what i do now copeing with my son and all the problems hes had i wouldnt have thought i could do it.

 

I think the phrase that someone used a grandma to one of the kids william i think it was sums it all up.You play the hand that god deals you.

 

 

I was in tears watching the program not because i was sad but because it makes you realise how crazy we all are fussing over clothes and size and haire and makeup and all the trivia...............whingeing and moaning over little things when in reality i for one am blessed.

 

Lovely post, Paula

 

Bid

Edited April 30, 2009 by bid

[Mum of 3]

Ive worked with sevearly disabled children, children who to some at first glance can appear to have no quaility of life kids in wheel chaires who have life limiting conditions hooked up to all sorts of machenes.

 

I too would think maybe theyd be better of dead they cant get anything out of life there just an empty shell.How wrong i was.I spent a year takieng kids like this to and from specialists schools and they did get something out of life they would respond to chatter to al sorts of stuf.One child who was deaf and blind amongst other physical disabilites would light up when the bus went go over speed bumps smileing and makeing sounds of joy.They all had personalites distinct to them.Who was i to say youre life is not as worthy as mine.I realised how naieve id been.

 

 

 

So what shelbys mum has her hands realy full with all her kids.I dont think i could do it she must be shattered.But then if someone had said to me 16 years ago id be doing what i do now copeing with my son and all the problems hes had i wouldnt have thought i could do it.

 

I think the phrase that someone used a grandma to one of the kids william i think it was sums it all up.You play the hand that god deals you.

 

 

I was in tears watching the program not because i was sad but because it makes you realise how crazy we all are fussing over clothes and size and haire and makeup and all the trivia...............whingeing and moaning over little things when in reality i for one am blessed.

 

 

I am in total agreement with you, Paula. I have been reading this thread with interest...One of my best friends was approached to take part in this programme when she was pregnant and found that her baby would be born with Spina Bifida and Hydrocephalis. The family would have had to be filmed throughout the pregnancy, birth, the first life-saving operation to close the hole in her spine just after birth, etc, etc....Understandably, she turned down the opportunity, but we discuss this programme avidly , and we are both grateful to those who were courageous enough to take part and share with the World the reality of life with a disabled child.

 

As for Shelbie's Mum, I have another dear friend whose first child was born apparantly normal. She first suspected things were not right when he was about 4 months old. After a long round of tests and appointments, she was told that he had such severe disabilities (which, for the 'diagnosis' debators, are still undiagnosed and therefore un-named!!), that he probably wouldn't survive past his first birthday. She has lived ever since with the constant 'threat' of his imminent death. He cannot communicate, we don't know if he can hear or see. She had to fight tooth and nail to even have him accepted into the SLD school he now attends-she was told there was no point in sending him to school-it was a waste of money!

In order to preserve his 'quality of life', she regularly nurses him through pneumonia, which is the thing the doctors think will finally kill him, and his regular epileptic fits. As Baddad said, who are we to judge the quality of his life. He is well looked after, has a loving family around him and has only ever known gent.lleness and love. She feeds him every meal, carries him up and downstairs, into bed, into the bath...He is now 9 years old, and has recently learnt to sit unaided. She has gone on to have 4 more children, none of whom are disabled. In her darker moments (she doesn't have many!), she has said that if her son does die, she wants as many other children around her as she can get, to lesson the pain.

 

Who are any of us to argue with that, or refuse her that right.

 

As far as I'm concerned, Shelbie's Mum should have as many of her beautiful babies as she has the space in her heart for. <'> <'> <'> <'> <'>

[pearl]

Bit of a "personal" one from me ...

 

After 3 miscarriages I was successfully pregnant with S, when unbeknownst to me a spina bifida blood test was done, which showed positive. They wanted to do an amnio but I refused as I knew there was a risk of miscarriage.

 

So what I did was, I phoned ASBAH (the spina bifida peeps). They were absolutely fantastic & visited me throughout the rest of my pregnancy, & prepared me for the best and worst possible scenario. And when she was born, without spina bifida, they visited again & celebrated the birth of a healthy baby with me. Just as they would have celebrated with me if she'd had spina bifida, I expect.

 

I spose what I'm saying is, its an individual thing. I wouldnt judge anyone who wanted to have the amnio, but personally I wouldnt have terminated after waiting 7 years for a baby, & I could see no point in risking the pregnancy just so I could "know". But I'd also respect the views of anyone who felt they couldn't cope, too.

[baddad]

Ive worked with sevearly disabled children, children who to some at first glance can appear to have no quaility of life kids in wheel chaires who have life limiting conditions hooked up to all sorts of machenes.

 

I too would think maybe theyd be better of dead they cant get anything out of life there just an empty shell.How wrong i was.I spent a year takieng kids like this to and from specialists schools and they did get something out of life they would respond to chatter to al sorts of stuf.One child who was deaf and blind amongst other physical disabilites would light up when the bus went go over speed bumps smileing and makeing sounds of joy.They all had personalites distinct to them.Who was i to say youre life is not as worthy as mine.I realised how naieve id been.

 

 

 

So what shelbys mum has her hands realy full with all her kids.I dont think i could do it she must be shattered.But then if someone had said to me 16 years ago id be doing what i do now copeing with my son and all the problems hes had i wouldnt have thought i could do it.

 

I think the phrase that someone used a grandma to one of the kids william i think it was sums it all up.You play the hand that god deals you.

 

 

I was in tears watching the program not because i was sad but because it makes you realise how crazy we all are fussing over clothes and size and haire and makeup and all the trivia...............whingeing and moaning over little things when in reality i for one am blessed.

[Mumble]

Paula, I'm in shock :o I think that's the first time in over two years on this forum that I've found myself agreeing with you!! (I hope you take that the way it's meant to be )

 

I spose what I'm saying is, its an individual thing.

And that's the bottom line, isn't it? These situations are so individual no one except those involved can know all the details of each case, and hypotheticals just wouldn't work because they can be tweaked to suit an argument. Real life can't be tweaked.

 

[forbsay]

the review of the programme by a TV critic.

 

 

[Paula]

Mumble

 

 

Im full of surprises.

[Mumble]

Part Two of this is on tonight, 9pm, on Channel 4.

 

If the review in the paper is accurate you might be needing a box of tissues with it...

 

[Mumble]

*Bump* :bounce:

 

This is just about to start on Channel 4 if you're interested.