Rosa Monkton Documentary - Letting go BBC

[SallyBear]

Did anyone watch the BBC1 documentary by Rosa Monkton about Young Adults with learning disabilities leaving home to live independently? Spoke massive volumes to me about how my oldest and youngest DS will cope living independently. Very sad.

Yes have just watched it - really shouldnt have done just before bed time
. Our issues are different as, short of a massive change in his development, DS2 will never live independently - but all the stuff about dying before your adult child who is still to all intents and purposes a child, really really gets to me like nothing else.

Me too. Depresses the hell out of me. My DS3 is 5, he has ASD, is deaf and has no speech or recognised form of communication. He is 100% reliant on us and we're not getting any younger.

Yes it's the one thing that bothers me about being an older parent (I was 42 when Ds2 was born). That, and not having had more children so that Ds2 will have more of a support network as we get older. I don't mean that NT children should be 'burdened' with the care of a sibling with SN, but at least they could oversee whatever care package is in place. Ds1 is brilliant, and without us ever mentioning it has already decided that Ds2 with live with him 'if my wife will give her permission' but it would be good if he had another family member for support.

Last summer I had a row with SS when they tried to cut ds1's care package (he is nearly 13, non-verbal, SLD's, severely autistic). After she'd gone (helpfully ds1 handed her her bag - repeatedly until she left ) ds2 said 'will I have to shout at SS like that one day?'. . I said well it's best not to shout but yes you do need to make sure he is being looked after properly wherever he is (along with ds3 who has a very black and white view of right and wrong - he'll be a rottweiler).

The main difficulty is going to be filling his days - he needs adult school really. A care worker paid the minimum wage to walk round town with him isn't going to cut it. We have to start planning at next year's annual review.

You need a package that includes surfing Jimjams

Considering the programme was predominately people with down syndrome and having a child, predominately with down syndrome myself, I was slightly miffed by the programme. Not to mention the facebook statuses afterwards which just got me even more riled, sad and annoyed. So these were mine:

there was one true sentence in that programme............letting go. Your child's life is in the hands of the authority, do they want to spend the money or not!!!??? Is your child worthy???

I know mine's not!!!
Like Iv'e always said, who say's you get to play god with my sons life!!!

letting go!!....................they can't even get childhood sorted, never mind adulthood, nothing much will ever change, especially for some. You either put up and shut up or speak out.

TBH I'm a bit fed up at all the comments on here. Yes it's natural for you all to worry, however look at what is going right for you just now. The majority are happy with the progress and although with a fight at times, getting the help they need.

Although in a minority, nothing is going right for my son, his voice is rejected and us parents as advocates are unheard and mistreated. Someone somewhere must be able to help.

If we don't get his childhood working for him, how are you ever supposed to get his adulthood even slightly there!!!!

Rant over!!

well, still seeing all these statuses about last nights letting go programme. I am now seeing those who are NOT worried as there 5/6/7 yo can pour a drink, make a sandwich, dress themselves etc.

So why am I now thinking where does that leave my 11yo who can't be loose in the kitchen in case he eats anything and everything, never mind hold anything. As well as prefering to be naked than dress, not that he can do that unsupported, never mind can't do zips, buttons etc!!

Some of the replies were fantastic and all those complaining didn't reply, says it all really. It works for some and not for others!!

As much as I know that the future is uncertain, I find dealing with the now more worrying. DS3 is 5, non verbal, deaf and very Autistic. He can't manage anything for himself now, let alone when he is 11 or 18. It's about doing your best I suppose to teach him what skills he needs for now, before tackling tomorrow's issues.

Exactly, we live for today also, no forward planning, it was just to highlight another side of down syndrome, having a child who can't access school never mind adulthood.

I watched it last night on IPlayer. I know my DD will never live independently but that doesn't stop me worrying about what will happen to her when we can no longer care for her.
I also have a nephew with Downs who went through mainstream school up to age 16 and is now at specialist residential college for 3 years (and what a fight his parents had to get funding for that). I think all the family hope he will one day be able to live independently - but that program really made you think about what exactly "independent" is. It was not true independence from parents for the young person.
I was also very saddened by the lad who had managed to live in a flat with a good program of activities set up in the day and a good care package for the evenings - only to have it all ruined by some selfish neighbour who couldn't tolerate learning disability on their doorstep.
It was a very thought provoking program for me.

I'm not sure deveintenigma - ds1 will require 24 hour supervision (I haven't seen the programme - proviso) and in some ways I think that is easier to fight for than the sort of wishy washy in-between semi independence. It's very clear that he will never walk down the street alone.

I was asked at this year's annual review what I felt ds1 needed to learn and what was most important for him, and I said behaviour. Above anything else, because if his behaviour becomes challenging it will massively reduce future options for him. Luckily he is in an environment now where challenging behaviours are dealt with sensibly and not allowed to escalate. It wasn't always the case.

I don't know if everyone is picking me up wrong, the programme mostly covered down syndrome, which my son is. He needs 24 hour supervision, has no danger awareness, no academic skills, no play skills, no self help skills, however he refuses to leave the house or do anything sociable. So if we have a child who is clearly a disability where plans etc drop into place, why are they getting nowehere in his childhood, never mind think about adulthood. If he won't/can't access school how will he be expected to ever lead some semi independent supervisied provision in adulthood.

I think what I mean is, if they can't get it right for someone who is clearly boxed how do you expect them to get it right for others who are not.

If they can't support childhood when it is clearly boxed how can they support adulthood?

Hope this makes it easier.

I think that deep down we all have worries for our DC about the future, regardless of disability or not. I agree that it can seem blindingly obvious that our DC with SN have problems now, never mind 10 yrs down the road, but it's how to get LA to recognise those difficulties now.

You get them to recognise it collectively, start steering groups, focus groups, link in with key people from the services. It's not something that can be done alone by one or two individuals but collectively as a group you get heard. Just like I'm not being heard here singly on my own. As a group you can be iyswim.

As for the future of my son I am not worried. He will be doing exactly what he is doing now.............a recluse in his own home..................where he has been for over 2 year!!

This has just been posted on FB. Seemed pretty relevant to this thread:

www.philly.com/philly/opinion/20120315_Facing_autism_s_hard_questions.html?ref=facebook.com

Yep! That pretty much sums it up for me.

I am not disregarding autism and I do get it. I also think it's godd the chap in the article has been able to express his worries as now they are able to find the way forward.

Again from a down syndrome pov, in comparison, which really, we shouldn't compare anyone, the lives that were being lead don't fit my sons. At 11 if he had a robot that could feed and water him as well as work the TV/DVD he would be happy. His life is so debilitated and no one listens to him, to us and quite frankly no one cares.

I didn't meant that you were disregarding autism - just thought the FB post was good timing given this thread!

Good article JImjams.