respite care for very severe autistic

devizes18193

Hi
My youngest 17 is now at the transitions stage.We want to keep him with us for as long as is possible ,he is non verbal and has developmental delay . Depending on the area this is between 2 -8 years .
The local council's day care centers reckon he is a risk to other users and don't want him . which while they might be right leaves my boy with next to nothing expect going around parks which with winter coming my wife and i are not happy about .

Has anybody been in this type of situation and how do you deal with it , Is the lack of centers for the very disabled a local or a countrywide issue .
Thanks

shegirl

It seems to vary but centres and places are limited.

My son has been going to the same respite centre for years and will do so for a few more (not sure if it's 16 or 18 but he's 13 now).They have facilities for 'challenging behaviour' including a padded 'safe room' that can be used.

I can't offer any advice really apart from to seek help from social services disability team.But you have my empathy/sympathy as I know it all seems so stupid,it's bloody hard and I'll no doubt be in a similar situation in a few years!

Can they not provide 1:1 or 2:1 for him to help with him making use of these services btw?

devizes18193

They are part of the problem .The kid is on the cusp of adult services (will be from next year ) he has always been a cost item so to speak and the childerns social workers are Playing for time his adult social worker is on the ball and is quite useful ,which is no mean feat as she is no suppose to be taking him on yet .I'm trying to buld up a picture of what there is out there . In Wiltshire is appears no be nowt .

shegirl

Doesn't sound like the easiest time for you.

Keep us updated anyway,it would be interesting to see how things go and hopefully others here may have some pointers!

Best of luck.often seems like they would prefer residential care as it's easier for them to sort

zaksmum

My sister had the most horrendous trouble when her very disabled son turned 19 and had to go into the adult system on leaving school.

Still trying to sort out a day centre for him after he finished school in June.

She's at her wits' end with it all.

bigspender1971

May be worth contacting the National Autistic Society to ask about options? Also, your local carers centre may know what's happening in the area. Hope this helps.

samanthag

i also know how you feel
i have an autistic son who is now 16 he has another 2 and a half years in school and lord knows after that

he does go to college for one day a week through school which he has throughly enjoyed and has been well behaved whilst there

but the college has said that unless the local council pay for a 1-1 for him then he cannot go there when he leaves school

i live in wales and there is no other option really other than me to give up my full time job in a school to look after him and claim carers allowance of £50 a week

its a joke really but it would be interesting to know what other people have done or what services are available

zaksmum

Seems to be very little interest in helping the severely disabled when they reach adulthood.

My sister has dreaded this time since her son was little...with good reason, it seems.

Her son can't speak and will always be in nappies, although he's now 6ft 5 inches tall. He has terrifying rages, bites himself, throws things - I don't know how she copes and the lack of help from the authorities is shameful.

samanthag

zaksmum wrote: »

Seems to be very little interest in helping the severely disabled when they reach adulthood.

My sister has dreaded this time since her son was little...with good reason, it seems.

Her son can't speak and will always be in nappies, although he's now 6ft 5 inches tall. He has terrifying rages, bites himself, throws things - I don't know how she copes and the lack of help from the authorities is shameful.

i know how she feels my son is like that also
he is 6ft tall and he also throws things he even takes his shoes of to throw them or he would think nothing of picking up the nearest chair and lobbing it :eek::eek:
he also hits himself and scratches himself
i am also dreading it when he finishes school god knows what we will do :mad::mad:

zaksmum

samanthag wrote: »

i know how she feels my son is like that also
he is 6ft tall and he also throws things he even takes his shoes of to throw them or he would think nothing of picking up the nearest chair and lobbing it :eek::eek:
he also hits himself and scratches himself
i am also dreading it when he finishes school god knows what we will do :mad::mad:

That's awful, Samantha. Believe me, I know what you're going through. Is your boy also in nappies?

shegirl

This thread is making me want to bury my head in the sand and pretend my son will never leave school:rotfl: