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SLD - worried about life after 18

(21 Posts)
donkeyderby Sun 14-Jun-09 23:40:47

I'm jumping the gun here as DS is only 13, but ever since he was tiny, I have been worried about what happens when full-time education finishes, and I have to contemplate the possibility of him leaving home for residential care.

The reason I have to contemplate it is because I can't imagine being able to cope with him for much beyond 18yrs. I have heard that day centres are closing and respite is even worse than children's services, so what will he - and we - do all day?

Is anyone facing this, or got there already? It scares me rotten. I worry so much about him spending the rest of his life with paid carers who don't love him, but I also worry that we will become ageing carers for a challenging adult with little respite.

FioFio Mon 15-Jun-09 12:33:53

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2shoes Mon 15-Jun-09 15:01:55

I worry about this too, dd is 14 and we are starting to look at colleges, I live in dread of 19 plus as I will be way too old to do the day to day care.

springlamb Mon 15-Jun-09 19:02:18

Donkey, my theory is that it's all worry till they're about 7 when you get a few quieter years, then from 13 on it's all worry again. DS is nearly 15 and the last year has been stressville.
Your ds should have a transition review in year 9, where you begin to discuss post 16 and post 19 provision (believe LEA remain responsible until 19 for young people with sn).
My friend's lad (quite severe autism) had lived at home with her (single parent) all his life, apart from once a month respite weekends). After much heartache and soul searching, when he was 19 he went to live at a Leonard Cheshire development 150 miles away. It has worked out marvellously - they are both extremely happy. She is now working full time and commutes to see him many weekends whilst waiting for a council transfer to the area. Fly in the ointment: funding of course. Every couple of years she is hauled over the coals by the council.
2shoes, there is a place not too far from you initials C.H. which has placements post 19 (residential I think). I don't have much knowledge of this place.
The place I have just been to look at, if you recall our FB convo, can keep pupils up to age 25 in some cases.

donkeyderby Mon 15-Jun-09 19:06:32

Fio, I hate the way it has been split up too, it takes me longer to navigate it and I couldn't find the fab SLD crowd - we have so many experiences in common even though your children are still younger. Glad we've hooked up now.

I had a conversation with another mum of a 19-year-old with SLD. He's now in adult respite services and gets bored and kicks off because sometimes he is the only young 'un there. It can be him and a bunch of 60-year-olds who only want to watch tv.

Imagine making an NT 18-yr-old spend a weekend a month with a bunch of near OAP's!It could only happen to our kids.

springlamb Mon 15-Jun-09 19:15:35

My friend's son lives in a 5 bed bungalow with other people his age and live in carers. It's part of a larger development (so the old dears are probably over the other side!) with central facilities. The social side is very good for him - my friend says the bungalow is always shaking due to rock music at loud volume, and they are always planning trips to cinema etc. The carers are quite young too.

Peachy Mon 15-Jun-09 19:26:17

Well ds3 is only 6 and we still fret about it, so understandable!.

The Paed suggested ds3 should live eventually in a suported flat, but he's changing so much that I suspect hell need mroe care.

I'll gladly look after him at home for a good while unless he becomes aggressive in an extreme way.

DS1 is also a conundrum: he may or may nowt become independent. But he won't be here after he finishes education, as he is already aggressive. He's almost 10 and its a worry

2shoes Mon 15-Jun-09 21:03:06

springlamb, it doesn't, it does 16 plus......but 19 plus is in the pipe line(dd goes there)

WetAugust Mon 15-Jun-09 22:22:10

Direct payments could help you keep your chidl at home and get the support required to do so. We got these following an SS assessment and it takes the strain off me to some extent although son is ASD and not SLD so I don't know how much support you would need or receive.

springlamb Tue 16-Jun-09 11:22:57

Where the heck am I talking about then? I have spent time the website for this place and was considering arranging a visit but felt it didn't quite suit misery guts here. I clearly recall thinking it would be good because only about a hour south of us. Now I am pissing myself off...am off to search.

FioFio Tue 16-Jun-09 12:50:06

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donkeyderby Tue 16-Jun-09 13:57:56

Fio, I feel sick too at the thought of it all.

Springlamb, the rocking bungalow sounds exactly what we'll need!

Wet August, the trouble I find with DP's is that you still get precious little respite from sleep deprivation and challenging behaviour and DS monopolising the living room with endless repeat TV programmes that we all know off by heart and violence towards his sibs. I also find that as we struggle to find something to entertain him with, the DP workers also run out of inspiration and there's only so many McDonald's happy meals you can eat! The workers we have employed have been very good on the whole, but DS ends up getting challenging with them too. He is much better suited to a stimulating, sociable, highly supportive and adapted environment, not one-to-one. We need him to be out of the house in order to get true R&R.

I have recently been asked to contribute to discussions re. adult services. Initially, I thought that it is too early, (and I couldn't be fagged) but now I think I will have to just to try to ensure something more suitable is in place for the journey ahead.

magso Wed 17-Jun-09 09:53:55

Ds future is a worry for us too and he is not 10 yet. I have not been as energetic with the entertainment recently (ill) and it has really brought home how much ds needs to be happy and at his most able ( and that I am wearing out!).
A 'rocking house' in a community (add in sporting cooking and gardening facilities) sounds spot on! Perhaps near montains and rivers for walking/canoeing/climbing fun.
I suppose we all have this unusual hobby of looking for suitable places for our dc to be happy. Whilst others get excited by the discovery of a nice restaurant on their travels - we get excited by discovering a lovely supported community!

FioFio Thu 18-Jun-09 08:48:15

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magso Thu 18-Jun-09 12:49:48

Hi Fio - still rather up and down but much much better than I was thanks! However I do worry about the future for ds - more so now. He is such a chearful active boy but gets bored so easily. He is not one for quietly watching tv or playing alone ( I wish sometimesgrin)- so an elderly peoples care home would be awful for him! (and probably all around him!)

FioFio Thu 18-Jun-09 17:44:56

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magso Fri 19-Jun-09 10:16:52

Yep - although in my case it may also be middle age! Ds coped well when I was obviously ill -but he doesnt understand my limitations now I look Ok again! He gets frustrated at the poor quality entertainment! I need to wear him out so he will sleep- so I can get to rest! Time to get a trampoline/ wefit perhaps! Wonder if I could sell that to DH? Neighbour kindly lets ds help with his evening dog walk sometimes which is a godsend and dh takes him to athletics at the weekend. SS never got back to me.

FioFio Fri 19-Jun-09 13:06:25

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saintlydamemrsturnip Sat 20-Jun-09 21:36:28

DS1 is 10 and has just started overnight respite once a week. In part because eventually I know he'll have to go into resi care. We do have a fantastic residential provision (run by the Priory - who pay their staff a decent wage and train them) nearby and I stopped panicking so much once I met the guy who ran the place.

I think at his school it starts being discussed when the child reaches 14. I'm going to go and look at everything then start the battle with SS. He has very high support needs, so a lot of provision just isn't suitable - which has its advantages in funding battles.

magso Mon 22-Jun-09 09:46:55

I have heard very good things about the Priory too. Hope the respite goes well Mrs T.
We have a couple of post 16 training ( horticulture/ farming/ baking) communities very close but after that or if ds looses his interesty in plants I do not know!

nodgersmum Sat 24-Oct-09 08:03:06

My son goes to a special college now which is brilliant.. they teach them how to shop and use public transport etc. Eventually they aim to get him into supported work and if this happens it will be more than I ever dreamed of.

This year I learned about Direct payments from Social Services. What a Godsend they have been!! Does everyone know about them as I did not.

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