If your child has so many 'special needs' that theyll really struggle in later life...

[AnyoneForTARDIS]

if they have so many physical/mental disabilities that there is no job/carreer possible for them, what other options are there?

mine has social problems/no concept of safety/behavioural issues (don't want to disclose disabilities but all valid)a 'Jeckyl and Hide' character, very unpredictable with outbursts and meltdowns. severe learning difficulties. and severely asthmatic.

so- cant work in a kitchen with sharp knives and hot stoves.
cant work in a bank or somewhere 'counting'.
cant work in a building trade because of dangerous/sharp tools etc.
cant work in gardening because of allergies and asthma.
cant work with a group of people because of unpredictable behaviour and could be accused of assault.

child not yet a teen but trying to think of options. home educated as cannot cope in school envioronment.
helps a lot but is very very limited in what is possible.

does anyone else think about these things and WWYD?

Id appreciate answers than questions as Ive explained everything already.

thank you.

I'm looking at specialist residential care - particularly, where they are big on art, but also have lots of other activities and onsite medical care.

Likewise my main aim is to find good supported living or specialist asd residential ideally run by charity like nas or other reputable body.

thanks for replies. mine cant actually go in res care as has too many needs only I can see to.

don't mind that at all.

but yes, maybe something arty would be good. DC enjoys art and we do loads of arts and craft.

good idea, thanks.

I suggest you think about what happens when you are too old to look after him?

I want to get DD settled in specialist residential care, run by a charity before we get too old - it is for those with very complex, multiple needs, who need teams of staff to look after them.

Tempe im trying so hard NOT to think that, though I know I should.

what charity is it?

I'm looking at specialist epilepsy provision - so its all different charities.

maybe I can ask the disability network people or social worker or SEN panel.

I know when DCS older theres a one or two day college day to learn/enhance any skill, so that will be good.

Hope it works out for you all too.

Thanks. At the moment, my LA is being very supportive.They agreed a 52 week placement in a specialist FE college, if we wanted it in the summer; and they have also agreed a 52 week placement in a specialist epilepsy residential care home for when she leaves college.

Im trying to think if theres something like they do for the elderly?

like a complex with flats and a community hall, somewhere we could live later on in life and Im around for DC yet shes in a safe contained envioronment (shell never be able to live alone or be independent) and can join things yet Im there, around if needed while shes doing stuff with a small class or something and there when she gets home IFKWIM.

carers and a caretaker around, there must be something like that for disabled people.

I don't mean this to sound rude but you need to let go of the idea that only you can meet your daughter's needs, unless she is unlikely to outlive you then it is something that at some time in the future you will not be able to do.

Many of us have sons and daughters that will never live alone or be independent, it doesn't mean they can't leave home (and their parents) like every other young person does at some point. It is much better to have this as a planned transition in early adulthood than as an emergency because elderly parents can't manage any more.

As your child is not yet a teen nobody can really give advice on what is available because it might be quite different in ten years time.

Of course I didn't mean to imply that everybody must leave home by the time they are 25, many people still live with their parents at that age. Obviously we all make different choices in life for ourselves and our families.

Unfortunately what often happens is people with disabilities live with their parents until they are in their 50s or 60s and having to move at that age can be very unsettling for them, and if it is due to ill-health of the parent there often isn't the luxury of time to make sure the placement is the ideal one.

Many people with disabilities don't go into residential care, they are supported to live in their own home.

I've worked with vulnerable people where the parent has died or declined in health suddenly. Knowing in advance of disaster what the back up plan is has made all the difference in the world as to how those vulnerable people have been able to cope with the change to alternative care arrangements. Whether outside care is required at 25 or at 55 for an individual can be down to sheer luck!

However I think being aware of your options is important piece of the empowerment puzzle at any age. For instance my son knows that if anything happens to me, then my sister and her husband are his named guardians for the rest of his childhood. It's in my will and SS have been informed,(makes it hard for them to challenge legally at a later date). Horrid as it sounds we all need to consider care plans in case we are run over by a bus long before our kids reach adulthood, to do otherwise could be very cruel. Scary I know.

Back on task - how about the myriad potential online careers working from home that are now available? Everything from Graphic designer to systems tester can be done from home and new career paths are emerging as new technology does? Artisans and artists also work from home as do teachers, child minders, dog groomers and bakers. This also offers the option for self-employment if working with people or full time work is liable to be a barrier to work force entry.

For an individual not yet a teen focus on those social & emotional skills, 3R's, and some creative stuff for now. Keep fighting for any and all therapies that might make a difference! It's amazing how the social stuff can be stalled for years and then huge leaps of progress suddenly occur when you least expect it. Don't put a lid on your aspirations just yet. I have a sibling who it was opined would never be independent or pass a single at exam at 10, yet in her 30's lives alone, has a post grad qual, & runs her own business. The corporate career path was never going to be for her, yet she's carved her own successful niche in life ta velly muchly. The support she needs now, compared to when she was a child is like night and day.

There are charities that run supported housing schemes - livability is one. I personally don't know of any where the parents live on the property too, but do know that some of my mothers acquaintances live a stones throw from an adult supported housing scheme in order to retain the best aspects of family life and independent living for everyone as they get too elderly themselves to cope with heavy lifting/meltdowns etc. Seems to work well for all concerned. This type of thing is more common in parts of Wales than England as integrating disabled people into the community seems to be a higher political priority to the local big wigs than somewhere like London where the onus is on pushing non-producers out of the capital.

Furthermore, we were all answering in response to the OP's situation - none of us are saying that residential care is right for every sn child in this country.

Thanks tempe48..

we might have to move to Wales one day then! .

zzzz - I have no idea why it isn't popular to discuss other ways of doing things. I listen to what the community care solicitors/barristers and independent social workers say is likely to happen.

I don't care what goes on in other parts of the world. They have different family set ups, child care systems, etc and its not relevant to us, here in the UK. (And yes, I worked on a helpline for parents of disabled children, and we got calls from all over the world, because ours was the only number they could find relevant to them, so they told us what things were like for them)

My empathy is for mothers or fathers in this country, struggling to cope with an adult with say SLD, challenging behaviour and severe medical problems on their own. Women can regularly be subjected to violent attacks by their adult child. My DD does not have challenging behaviour, but she is stronger and two inches taller than me - she can push me over; or slap us really hard anywhere, when we are not expecting it.

Given how cash strapped LAs are, social care is IMO in a worse state than the SEN system. Parents are only going to get specialist residential care for their adult disabled child, if even SS recognises they can't cope - and that's about as easy as getting an expensive independent specialist school placement in the SEN system.

In my own case, not only can we not cope with DD1 - and even the social worker considers that her needs are beyond any family; but she and DD2 cannot live in the same house. DD1 is in tears all the time about the fact DD2 is "normal", can go to university, go out drinking, etc. DD2 is suffering grief over the loss of her sister - because DD1's epilepsy is progressive. The prognosis for DD1 is moderate-severe cognitive degeneration (already happened), severe behavioural problems and psychosis. DD2 has developed a host of mental health problems, and been taken to A & E 5 times this year for being suicidal. The social worker considers DD1 just needs to be somewhere safe (ie specialist epilepsy placement), and DD2's needs are greater - because she needs our support. Mental health services are not looking after her.

We have Sophie's Choice. If we have DD1 to live with us, we will have to sacrifice DD2 - the one, who can get a first, get married, have children and hopefully look out for DD1, when we are gone.

I am with zzzzz with this, But each to their own, I have many friends in this situation and we have very differing views but none are wrong!!