CHANNEL .....4................TONIGHT......9.00........................BORN TO BE DIFFERENT.....

[RTKangaMummy]

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................ 9.00...........

...............PLEASE DO NOT MISS

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next week is following them as they turn 4 and what the future holds for them

Shelbie who needs oxygen and has the fits that last about an hour and drop her SATS but can't be given the diazapam by ambulance cos of her breathing difficulty so has to be given general anestetic to calm the fit down

And William who has up to 40 fits a day as well as ADHD and the surgeons don't want to cut any more of his brain away to cut out the tumours cos they don't think they will help him

I didn't watch this prog, partly because I just DON'T watch this sort of thing, but it also seemed from the blurb in the Radio Times that these were all medically-related disabilities iyswim. Were there any pure learning disability cases? I'm genuinely interested, I didn't watch to find out for myself.

Davros, they are mainly medical as they followed the children prenatally or straight from birth, so needed to have disabilities that were immediately obvious at birth.
Arguably though the little boy with DS has no 'medical' disability. I think they did an excellent job having a good spread of issues (considering the 'from birth' thing).

Jimjams I am very aware that our sons are the same age and that my son started out seeming fairly severe, but has made good progress.
I can imagine how it must make you feel

davros there is a little girl who has chromosome disorder which obviously invoivles a very severe global delay, a boy who has tuberus scelrosis and a boy who has down syndrome. They are they only three that are 'learning' related as such. There is a little girl with spina bifida and another little girl with some limb deforminty.

jimjams, you always paint such a vivid picture of life with an autistic child, whenever I read posts like that is makes me look at things in a different way. Like the infamous one you wrote about not judging other children's behaviour because you may not know the full story.

I just found the programme awe inspiring and very very humbling.

also wasn't Shelby's mum's boyfriend lovely. So good that she'd got someone to help her with it all.

jimjams- please don't think i was comparing eczema to a diability. i wasn't at all, in any way.it was just the only example i could use from my life to illustrate my point about wishing away disability. it seems obvious to me that if you could you would, i'm struggling to understand those who say they wouldn'tBUT i am not in their position and so have no concept of their feeling s or their life.

I found the programme - humbling.

alex- no don't worry- I was trying to explain the difference as well- between something which is part and parcel of who someone is, and a disability which totally limits what you can and can't do. Eczema's a good example to me partly because I know it well, and it does limit/make harder many activities. What I have found is that unless people have direct experience they find it very hard to understand why we can't do all the things I listed below. Roz Blackburn was interesting- she can talk publically (and brilliantly) at internatinal conferences but is still in nappies, can't be left alone, can't go out on the street without a carer. She said that she doesn't understand why but she can't access activities unless they;'re aimed for the PMLD community- and tbh ds1 is the same, and I don't really understand why either!

KR- you are very kind- thank you!

jimjams whats pmld?

profound and multiple learning difficulties-- very, very severely disabled.

Blimey - this thread took off!

MrsGR - I'm sorry you felt attacked for your comments. But I think the reality is that they did sound a little judgemental of people whose situation you cannot have any real understanding of unless you have been there.

I think also the thing is - when your life is that extreme, 'sensible' doesn't come into it. So no, probably not sensible to smoke in a house with oxygen, but I doubt that Shelbie's Mum has the space in her head to think of that. And no, probably not sensible to f**k your ex-boyfriend and get pregnant - but how can we judge that without knowing the whole story?

Anyway - I know your intention was not to offend.

Message withdrawn

I watched it - some of it made for tough viewing, the pump feeding and Sat's stuff took me right back.

Three cheers for Shelbie's mums new partner though - he took on a massive commitment there. Was pleased to see her with some support.

I've only read the end of this thread. Thanks for giving me more info on the prog, lazy cow I am! I won't be watching though Totally agree with RnB, put me on the list for the magic wand too!

I too would love a magic wand.
There are so many people in DS circles who say they wouldn't want a 'cure'. I just don't get it (and feel rather envious of them really for their powers of acceptance).

Dd2 is due to have two surgeries next year to insert screw threads and a screw into her skull with the hope that a different type of hearing aid will help her. She's only 4 and she's had so many problems. I'm sure she'd rather not have DS and doesn't feel 'lucky' or 'blessed'. Bleurgh!

Oh geekgrrl, poor DD I accept DS and his ASD, I just don't LIKE it! And I think he'd be much happier without it.

sorry about my behaviour last night but I did feel like HITC has explained and to be honest i think watching the program took me to a place I didnt want to be and someone on here got it in the neck. i am sorry MrsGR, but I hope you realise how 'different' things are when people are under so much pressure. that doesnt excuse my language though

Just read the whole thread now..... I don't want to be humbling anyone (maybe I wouldn't ). To put our situation in perspective, DS has more or less no health problems but he's never said "mummy", that says it all to me.
Oh, and children with ASD can develop epilepsy around age 10, ugh! One at DS's school has [fear]

ds1 has called me daddy and nanig ROFL - extracted with much prompting- given up on mummy

Do you fear epilepsy as well Davros? I do worry about it- a third of children with autism I read somewhere (I think they were talking about the severe end of the spectrum).

Jimjams - when I went to CAMHS with my df whose son is autistic he said epilepsy can develop in some children with an IQ under 70 with autism? I think he said it was about a 20% chance?
Hope that hasn't worried anyone but that's what the paed said to my friend as she has epilepsy and so does her dh and they were worried that her ds's adhd behaviour may be epilepsy.

"Just read the whole thread now..... I don't want to be humbling anyone"

I can't help what I feel when I watch the programme davros
i was talking about those specific parents.

Oh blimey, something else to look forward to!

I think the hardest thing must be the fact that SHELBIE was not expected to live and that her brother has already died of the same condition

And the family has to live with the fact that each day may be her last and each time she goes into hospital. She may not come out again.

Her mum says that if she gets into teenage years she will be happy because that is alot more than was expected

And whatever disabilities the children here have, living with a child with a very limited life expectancy is a different kettle of fish

I also think her boyfriend is wonderful in what he has taken on.