Transition to adulthood

shegirl

How the heck do you handle this?


My darling boy is 16 now, severe autistic with learning disability and challenging behaviour. He's also complex and it's been very hard finding support because most avenues haven't been able to work with him appropriately. We've now got a potential plan but now need to think of his future aswell and a referral has been made to adult services already due to his complexity and his need for 24/7 care.


I kinda knew it was coming, but have now been told it's easier and much more likely for support to be found when he's 18 if he moves out into his own home with support workers 24/7 and comes home occasionally for 'breaks'.


I'm a single mum and gave up my whole life for him. We haven't had support for over 2 and a half years now so I've been doing everything with and for him day and night,which is exhausting.I haven't seen my friends for all that time as he can't handle it and,aside from now working from home, I've had no life of my own.


To think that in 2 years he's going to be gone it really hard and scary and I feel like I'm going to be put on every scrap heap possible. Along with worrying about him, people taking advantage or hurting him and getting the right provisions for him. It's horrible.


Any stories to share please?

tomtontom

If you're on FB have a look at the Get Steven Home page, Mark and several people on there have been in your position - I'm sure they wouldn't mind offering advice if they can. Steven is Mark's son, and I believe has a tenancy in his name with his father as a live in carer. Might be a way round the issue?

I really do feel for you, knowing how lacking support can be. I don't do virtual hugs but am sending you a thumbs up - you will get through it

shegirl

Thanks I follow Mark Neary on Facebook and, to be honest, some of the stuff that comes up terrifies me

densol_2

Sorry to hear about your worries ive no advice but hope it all works out as best it can x

System

I have an 18 yr old who was referred to Adult services who were completely useless but she was then referred to the Young adult transition team who have been brilliant.

Are there any short break schemes near you my daughter goes to a youth club once a month for 3 hrs and all being well she will be going away for the weekend in September.

shegirl

CHRISSYG wrote: »

I have an 18 yr old who was referred to Adult services who were completely useless but she was then referred to the Young adult transition team who have been brilliant.

Are there any short break schemes near you my daughter goes to a youth club once a month for 3 hrs and all being well she will be going away for the weekend in September.

Adult Services may not be great but ds will need 24/7 care for life so they have to move their butts.

Short breaks services won't be much help but I'm about to start getting overnight respite again,with him going back to the same centre that stopped our service in 2012, but getting additional workers in too to provide an enabling service as well and giving me a full straight 24 hours a week off Then additional in school holidays and using it as a transition as well, so his future,from 18 onwards, starts being planned right now.

Get a break again and you instantly have to start planning what will happen in two years time! Depressing!!

devizes18193

Hi
We spoke a few years back . My lad is severe as well in the top end of being a managerial problem .We where aginst supported living full time as . t was not ready as he is also non verbal and has developmental delay . Its now 2 years later he is on day care 3 to 1 and on some days he make them earn his money a minibus with milage and a house ti use as a base in bad weather .
Now the idea will be down the line he will be full time but by then he will be used to his tem and vise versa .
It's taken 2 years of hair splinting, justifying the concept and researching the argument . Currently we have evey thing that 2 years agao people s no it can not be done said the proffesionals at the time .
The point is you know what environment works best for your kid and you will have to fight for him , every time they say no ask why and get them to list reasons .
The thing with the support sounds tonsils .they are saying to you support to be found when he's 18 if he moves out into his own home with support workers 24/7 and comes home occasionally for 'breaks'.
If you wanted do get it phased in and him stay with you for example it will be cheaper then them sticking the lad in a full time home .
You should not be letting him go not till your happy his needs are being catererd for . Having said that it will be a fight .