[gillypanda]

Is anyone else watching this now on BBC1?

I saw a trailer on Breakfast this morning, it's going to be a really sad but thought provoking programme

[EEfan24]

I'm watching. It is quite sad but I can relate to them very much with having a disabled younger brother myself

[gillypanda]

Do you feel the same sort of responsibility towards your brother, EE fan, as the other siblings on this programme?

[snowy ghost]

it is a very moving programme

[snowy ghost]

poor Rose

[EEfan24]

Originally Posted by gillypanda

Do you feel the same sort of responsibility towards your brother, EE fan, as the other siblings on this programme?

In a way yes.. he is autistic (age 15). I don't really know any different to how my life is but I do feel like I have a responsibility towards him. He's not particularly vocal like the boy in this programme with aspergers, in fact his speech is where he is mainly delayed but he can't be left alone and needs quite a bit of support

[gillypanda]

We were just saying, surely the authorities cannot watch this programme tonight, seeing how close to a breakdown Rose's mum is, and still do nothing to help her?

I would say it's unbelievable, but sadly I've had first hand experience and know that it isn't

[mustard99]

I do not have children so am not sure where I fit in the reaction to this programme. However, it is heartbreaking. Can we condemn if we have not walked in their shoes? I do realise that previous posters have not condemned, just putting the thought out there x

[jenailsa]

It is just so sad and must be incredibly hard.

[gillypanda]

Rosa Monckton was on BBC Breakfast this morning, with Rose's mum.

She was saying that she hoped this programme would raise awareness, and how in the future there would be a central point of local contact for every family with a disabled child.

This would be a person based at the doctor's surgery, not a doctor or nurse, but someone who could co-ordinate the care/respite/benefits help for the families. I would so love that job! I've fought my own way round the system on behalf of my son, and I'm still fighting now that he's an adult.

However, it all takes time, something in short supply when you're totally involved in your child's care. I hope this programme helps to change things.

[grimtales1]

Its hard to watch Especially the guy with AS though I couldnt identify with him even though I have mild traits.

[courtney_synn]

I have just finished watching this and was in floods of tears by the end.

My four year old daughter has cerebral palsy. Having a child diagnosed with a disability hits you like a ton of bricks. But when she was a baby it didn't feel as hard as it does now. This scares me as I know that the older she gets the harder emotionally and physically it will become. This is what upset me whilst watching the programme - knowing that my journey with a disabled child is really just beginning.

However, as I was sitting in tears my daughter (who is still awake, its a regular occurrence unfortunately) saw that I was upset, gave me a huge smile and a kiss. THAT is what helps me get through.

[mustard99]

Originally Posted by courtney_synn

I have just finished watching this and was in floods of tears by the end.

My four year old daughter has cerebral palsy. Having a child diagnosed with a disability hits you like a ton of bricks. But when she was a baby it didn't feel as hard as it does now. This scares me as I know that the older she gets the harder emotionally and physically it will become. This is what upset me whilst watching the programme - knowing that my journey with a disabled child is really just beginning.

However, as I was sitting in tears my daughter (who is still awake, its a regular occurrence unfortunately) saw that I was upset, gave me a huge smile and a kiss. THAT is what helps me get through.

Good lord! My lovely healthy god daughter was poorly one night and cried the house down - she was four at the time. Both parents were at home and looked after her all night. I was in the spare room, got grumpy due to my lack of sleep and could not wait to leave the next day. I've met deeper puddles than me on this!! Must learn to appreciate more.

[Rorschach]

I too watched it as an interested party, having a nine year old with Tuberous Schlerosis, ADHD, Autism, sleep disruption and severe learning difficulties.

Unfortunately it did nothing but confirm what I already know; it's hard, you get so knackered you turn into a horrible person, it would be much easier if I had loads of money and could hire additional assistance, it's not fair on my other (younger) daughter*, you have to fight for every thing that's "available" from the local authorities and at eighteen you have to do it all over again.

I'm certainly not filled with belief that the authorities will see this programme and suddenly make everything better.


* I hated the way she put words in the younger brother's mouth...and did pictures of Princess Diana have to turn up so often.

[courtney_synn]

Originally Posted by Rorschach

I too watched it as an interested party, having a nine year old with Tuberous Schlerosis, ADHD, Autism, sleep disruption and severe learning difficulties.

Unfortunately it did nothing but confirm what I already know; it's hard, you get so knackered you turn into a horrible person, it would be much easier if I had loads of money and could hire additional assistance, it's not fair on my other (younger) daughter*, you have to fight for every thing that's "available" from the local authorities and at eighteen you have to do it all over again.

I'm certainly not filled with belief that the authorities will see this programme and suddenly make everything better.


* I hated the way she put words in the younger brother's mouth.

Totally agree. I think this was another thing that upset me whilst watching the program, the sense of despair at watching what I experience on a daily basis being played out in front of me but knowing nothing will be done about it.

The thing that struck a chord was the idea of spending so much time being a carer you aren't actually a mother. I have never thought of it like this but it's so very true.

The idea of someone based centrally to co-ordinate everything would be brilliant. I have so many people involved with my daughters care, appointments and so. Having to remember all of this as well as the day-to-day things is a nightmare especially after (several) sleepless nights.

I won't hold my breath though.

[grimtales1]

The smug upper/middle class narration annoyed me somewhat, also some people may think AS people are as bad as Cameron, I've never known anyone like that, I certainly wasnt like that at 17 (though I have a less severe form of it maybe?)

[shya100]

Originally Posted by grimtales1

I've never known anyone like that, I certainly wasnt like that at 17 (though I have a less severe form of it maybe?)

AS is indeed a spectrum disorder within itself and as with most things in these cases, and in anything really, no two cases are ever the same.

I can understand why some people may have found the narration a bit 'too posh' and indeed Rosa Monckton is posh. However I liked the way she did the programme. She just let everyone involved speak for themselves and I think it really hit upon the key issues.

[grimtales1]

Actually I could identify with some of Cameron's OCD issues, I'm often "checking" stuff over again
You're right, no two cases are the same I guess

[Aquajaney]

I thought the programme was very good, it put over the fact that any help you get for your children is based on how hard you fight.

I really felt for the AS boy his actions seemed to be totally involuntary and he wanted to get back to the happier times he remembered and of all the disabled children featured he was the only one who seemed to have any awareness of his problems.

I cried for the siblings shown there as they were so lovely but carrying a burden on their shoulders.

The parents were all absolutely amazing and I admire Rosa Monckton for her honesty regarding her feelings for her daughter. I thought she did a fantastic job and I hope it wasn't just parents of children with disabilities who watched it and it gave them a bit of an insight into what others have to deal with.

[jenailsa]

Originally Posted by Aquajaney

I thought the programme was very good, it put over the fact that any help you get for your children is based on how hard you fight.

I really felt for the AS boy his actions seemed to be totally involuntary and he wanted to get back to the happier times he remembered and of all the disabled children featured he was the only one who seemed to have any awareness of his problems.

I cried for the siblings shown there as they were so lovely but carrying a burden on their shoulders.

The parents were all absolutely amazing and I admire Rosa Monckton for her honesty regarding her feelings for her daughter. I thought she did a fantastic job and I hope it wasn't just parents of children with disabilities who watched it and it gave them a bit of an insight into what others have to deal with.

I agree totally. I thought Rosa Monckton was excellent. Totally honest and very very sympathetic with the plight of the others as well as having to deal with her own situation. She may have money but it cannot help with the heart wrenching sadness.

[Elementaire]

Originally Posted by Aquajaney

I thought the programme was very good, it put over the fact that any help you get for your children is based on how hard you fight.

I really felt for the AS boy his actions seemed to be totally involuntary and he wanted to get back to the happier times he remembered and of all the disabled children featured he was the only one who seemed to have any awareness of his problems.

I cried for the siblings shown there as they were so lovely but carrying a burden on their shoulders.

The parents were all absolutely amazing and I admire Rosa Monckton for her honesty regarding her feelings for her daughter. I thought she did a fantastic job and I hope it wasn't just parents of children with disabilities who watched it and it gave them a bit of an insight into what others have to deal with.

Lovely post Aquajaney, I agree totally too (and cried too for the siblings).

To me it seemed as if Cameron also had Tourette's, alot of his actions/swearing seemed so involuntary..

[Foxie3]

Brilliant presenter. I hope we see more of her. The whole programme was treated with respect, sympathy and honesty. Brought tears to the eyes without any feeling of manipulation. Excellent.

[grimtales1]

Good point, Cameron didnt seem to be able to control his swearing. Also his skipping down the road sideways etc, maybe he didnt know what he was doing.

[Ojo]

Originally Posted by Aquajaney

I thought the programme was very good, it put over the fact that any help you get for your children is based on how hard you fight.

I really felt for the AS boy his actions seemed to be totally involuntary and he wanted to get back to the happier times he remembered and of all the disabled children featured he was the only one who seemed to have any awareness of his problems.

I cried for the siblings shown there as they were so lovely but carrying a burden on their shoulders.

The parents were all absolutely amazing and I admire Rosa Monckton for her honesty regarding her feelings for her daughter. I thought she did a fantastic job and I hope it wasn't just parents of children with disabilities who watched it and it gave them a bit of an insight into what others have to deal with.

I watched and don't have a disabled child but two healthy children. And yes, it did indeed open my eyes. I cried for those parents, siblings and children. So sad

[*suzie*]

I have this saved up to watch.