....to be touched by tonight's 'Letting Go' programme (BBC) - Downs Syndrome children/ Vulnerable adults?

[HalfPastWine]

Every parent wants the best for their kid's future but how distressing must it be for those parents with children who have a condition. Children who in the future will live as vulnerable adults and will still require care when their parents are no longer around to look out for them. The families in this programme are really having to fight for care/resources for their children/young adults. I never knew that it could be so difficult to secure this care and how hostile it can be out there for them.

I can't help but feel that there aren't enough resources out there to support them. It feels like they are being forgotten.

I watched it probably foolishly as my disabled dc is current on his overnight respite stay.
It was very moving but equally terrifying, in fact my stomach is in knots atm :(
My ds, baring a miracle will always need support and even the independant type living facilities would be completely unsuitable for him.
The situation regarding the young woman who has basically been abandoned by the local authority was heart wrenching as was the young man whose placement broke down because of his neighours was sickening.
I very rarely even think of the future for ds and tbh wish I had'nt watched it.

I think that by airing the programme it will bring awareness which can only be a good thing.

Absolutely half and if things were different I would think exactly the same.
Education has to be the way forward and these types of programmes can only be for the good.

YANBU.

I have recorded the programme. I will probably watch it tomorrow.

I have 2 sons with SN who will be vulnerable adults. When I'm gone, it'll fall down to their 'normal' sister to take care of them or engage in a fight for assisted living for them.

It's a constant worry for me and I don't want my daughter to have her life overtaken by her brothers needs.

I refused to watch it, I'm bloody terrified about what will happen to my children when I'm not here to watch over them anymore. I have no younger relatives to take over the caring role, their cousins both have the same condition.

Their future, their safety,their happiness, will one day be in the hands of the state and to an extent the kindness of others.

YANBU.

I have two stepchildren with asd's, and am scared to death (literally!)how they will cope when they move, as they wish to, due to the fact that I know they will not get the support that they need(I will have to do it)

And It is soul destroying for me who has worked in that system, knowing that due to the cuts etc, people with more needs than them will not get the support they need.

It touched me too ,I feel petrified for the future for my ds with SEN.The young man in Devon remind me so much of him,he has that optimism and zest for life but how can I temper his ambitions with some realism without crushing that self belief

I wonder if any one else feels kike me.

I have spent the kids childhood, getting through the day to day nonsense, and feeling that with the help that eventually came from 'outside' the children were getting somewhere and then feeling shot down again.

After all these years of inclusion, help etc, it is just going to stop, and no matter how much I sometimes feel that my partner and I have done most of it on our own, their help was needed and it will go in an instance.

My mum's cousin had learning difficulties and was an only child.
He stayed with his parents and then his widowed Mum until he was about 40.
He was physically fit and able, but I guess mentally about 7. He loved blue Peter and toy cars.
He could go to the shop down the road, where they knew him, but not into the city centre.

Anyway, just before his Mum died he transferred to sheltered accommodation with some house mates with DS and lots of support with cooking and budgeting etc.

I only visited once (my Mum was never that close and we lived a long way away), but I have never seen him so happy.
He was obviously revelling in having friends in a light bright environment, rather than Mum in a dark little terraced house.
My uncle went to see him many times and said he continued to enjoy living there.
Sadly he died of cancer in his early 60's.

I just hope your DC find their special place too!

My brother has SN. I have to tell you the road for him as an adult has been a very very hard one. It has been very draining on my parents and myself and if I am honest its actually been terrible experience for the most part of 20 years.

When my parents can no longer do it I am glad that I will be around to fight his corner and I also have had a promise from my DH that if anything happens to me he will make sure my DB is ok.

I didn't see this show last night so I will watch it on the iplayer, it sounds informative.

Near my parents there is the Rare Breeds/Canterbury Oast Trust. This is a wonderful organisation that provides a lovely day out for families and work with animals for adults with learning disabilities. I know not every adult with learning disabilities can end up with a job in a lovely place like this, but I think it's a great model.

I'm ashamed to admit that I was always a bit about SN children going to mainstream schools. I was ignorant and felt that they would hold the 'normal' kids back. One thing this programme has taught me is the importance of this and how mainstream education should be encouraged. 'Normal' children learn to understand the needs of SN children so that they grow up into a society where they are aware of the needs of vulnerable adults.

I think too many people assume 'the system' will take care of vulnerable adults and this programme was a real wake up call for me.