AIBU to consider a future with DD staying at home?

[Thefutureisorangey]

Family consists of me, DH, DS (19, at university) and DD (16, in yr 11). We are starting to think about retirement but can't afford it without downsizing significantly. There is no other family.
DD is lovely, sweet, honest and vulnerable. Many diagnoses, including ASD, but not helpless - she just doesn't enjoy the chaos and noise of the world. We think she might scrape some grade 4s in her GCSEs. A levels wouldn't be academically appropriate, and our local colleges, though great and providing a brilliant provision, are rowdy and bustling.
So here is my AIBU. DD is showing no signs of ever wanting to fly the nest. She has explained this. We have tried to broaden her horizons but she is so introverted that even holidays now, if we could afford them, would be problematic. She wants to live with us "forever."
Has anybody got experience of this? In just a few months the school is going to want to know where her "destination" will be. Apprenticeships are crazily competitive, level 3 qualifications will be almost certainly too difficult for her, the level 2 qualifications that she's interested in are all very male-centred roles that she has recoiled from when she's actually experienced the environment, and I'm not sure what to do with her!
If we allow her to just stay at home, cleaning, cooking, volunteering for local old folk (which will very soon be us!), is that even an allowed thing?

My friend has a child with MH needs, she is 17 now but left college at age 16 , 6 weeks into her A levels and got a job at a local care home. She does usual carers training it's not an apprenticeship. She couldn't cope with studying more academically bc of the stress and noise at college.

You won't be able to downsize until your uni aged son leaves home after uni as they are back 4-5 months of the year.

When you do, you may want to keep at least a 2 bed so you can have one child at least live at home or return home. But sometimes 2 bed bungalows are almost same same price as 3-4 bed houses just smaller (!!) and you lose as much as you gain in same fees and stamp duty, unless you have a big property. For eg my parents are selling a decent sized 3 bed semi house with garage to buy a small 2 bed bungalow ! 😱

Sale fees not same fees

Look at colleges within travelling distance more widely - there's plenty of time for her to learn a greater breadth of stuff before she stops being in education all together. Many colleges will have specific foundation programmes, others will have Level 2 options. There will also be online options (she might get on with some Open University stuff, notwithstanding how GCSEs are going at school) and perhaps evening class options you could do together.

If she's going to be with you in the longer term, she'll need, if at all possible, to learn independent travel skills - can she use buses/trains/cycle? Might she be able to learn to drive a car? Her independence will to some extent be dependent on this, though less so if you're able to live within walking distance of the places she'll want to get to. A rural location, with little public transport isn't going to be a good option if she isn't going to be able to drive / can't afford a car.

She's also going to need to be properly embedded in the local community, so she has friends/peers/acquaintances who aren't you [think about early lockdown and how intense the interactions were within households for some people because nobody was seeing anybody else socially]. School friends may well not stay in the area. If you're religious, is there a suitable religious community? Are there book groups/similar at the local library (they may be restricted to 18+)? Are there places locally to volunteer? I'd plug Guiding and/or Scouting as being good places to look. Are there local groups for Autism and/or her other difficulties?

Depending on many factors, it's worth thinking about whether there might be paid work she'd enjoy / not find stressful - if she likes cleaning that might be one option.

You will have to do the longer term planning for how she might look after herself / what support she might need when you're no longer around, but you don't need to do it now - she's got plenty of time to stay in education and to transition into work (or not work) in years to come so you can see how she gets on with life after school. There's usually merit in making sure somebody in her position won't lose her home on the death of the second parent, by having her live somewhere else by that stage, but if she'll be able to stay in the house it's perhaps less of a problem.

She's only 16, a lot of time between now and when she finishes university. They change so much!

Hi

My son has asc plus loads of other stuff. He had a statement from aged four. Is it possible that you can get her an EHCP and name a special school with a residential sixth form. My son did this weekly boarding and they supported him in the local college and also at school to get further qualifications but more importantly travel training. He was already fine with housework and laundry. Then we got him a social services assessment and they paid for an assessment by the QEF for learning to drive, and, most importantly support from an employment support group so his key worker went with him to interviews and was his advocates in the workplace. She went with him for his first few days (ridiculous early hours working at the Christmas post sorting office), then at his next two permanent jobs. He also got a PA which we used for a couple of years to go out with him to things and that really helped with the travel training. Once he could navigate Clapham Junction, we knew we had mostly cracked it. He works full time, has his own car and has bought his flat. I am immensely proud of him although he still needs a lot of our support.
We were lucky though in that he loves holidays and going to new places. His processing is slow and his dysprAxia makes him vulnerable (he will get his wallet out and fumble around getting out change).

We are in a similar situation but our daughter ( early 20s) has severe anxiety and disabling CFS so even if she wanted to she would be unable to hold down regular employment . At the moment she is writing a novel ( is a fantastic writer ) and when my husband retires we will set up some sort of business for her , probably animal related ( home dog boarding or something of that ilk ) . We pay her NI contributions and have done for years . Fortunately we are in the position that we can afford to ‘keep her’ and it not affect our lifestyle and I just make it my business to make sure that her life is as good as it can be with the limitations . She should be ok financially as our son is well off in his own right and would see her alright if need be when we pass on .

Did you read the OPs posts?

I habe an adult daughter like this. She still lives at home (is just about to turn 30) and receives benefits (esa and higher rate pip). She gets no help from anyone (apart from her benefits). I do wish we had been more proactive when she was younger in getting her out of the house and into the world. She spends a lot of time at home and working in our garden. She’s happy but has a very small world which doesn’t bother her but does us! Her sister also has some disabilities (twins both born very premature) but she manages to hold down a minimum wage job cleaning at a local Uni. We did move to be nearer a town and now she can walk into town whenever she fancies which she does do once or twice a week.

When my DD was 16/17 she said exactly the same thing. She wanted to live with us forever and never wanted to move out. She said that she could get the garage converted and make it into a flat.
Years later, she is at university and rarely comes home!
I know that your DD is in a different situation but she is still very young.
Things may or may not change. I told my DD at the time that she could stay at home as long as she liked. I don’t think there is anything wrong with families continuing to live together if that’s what they want to do.

Have a chat with the school. They should have arranged for the preparing for adulthood team to talk to her.

@Daleksatemyshed You may have read my previous post, my brother is the same. It’s so hard isn’t it, I wish he had wanted more and tried for so long to encourage him but it’s just fallen on deaf ears and he’s now stuck and has been for years. I fear for the future as he doesn’t claim benefits (won’t as he knows he’d have to find work) so doesn’t pay NI and only paid it for about 4 years in his entire life. We are virtually NC now (mainly his choice) but I do worry. Sorry I am derailing the thread slightly but I’ve not spoken to anyone in the same situation before.

My friends DD is much happier in her job. She can do in-house training. She's learning to drive having saved up for a small car already (bought partly from her gov child savings account and her wages). Her mum is keen she learns to drive as the early morning late night shift mum taxi service is tiring as mum works FT.

@AlwaysLatte did you actually read the post?

Sorry hit post too early. Someone once said to me as long as she is happy what does it matter. Not sure if it’s too late to get her a social worker or something to try and help her get out into the world. We set up a trust fund for them both when we die we will have trustees to manage the money with the girls together as they are both very vulnerable. The daughter who works also still lives at home. Luckily we have enough space for us all to live together comfortably.

I would really caution against this. Theoretically, young people should be in education, employment or training until they are 18. Does she have an EHCP? As a pp mentioned, please contact your local sendiass for advice. All LAs should have a service for NEETS that cover up to 25 years old with SEND. I would
push all my efforts to help her build all independence skills so that when you pass, she will be able to manage. I have 3 autistic daughters myself and this is my main objective now.

I would say over half my family are autistic, and my mum ‘kept’ my brother at home rather than helping him live independently. She got dementia and he does not work but volunteers with animals twice a week. He has no social
contact and lives with my Dad, who is abusive. It is horrible, and with my own daughters I cannot also ensure he is ok. Sadly, I resent my Mum for not trying harder for him.

I live half way across the world for them and I can really only focus now for caring for my own children. It is very sad. I would urge you to find a college/living skills course get her skilled in catching public transport (an EHCP can help you with this, but also look at the local offer), shopping for herself, cooking and cleaning.

I understand the concern however my feeling is as her parent you have a duty to encourage her to seek something appropriate for your DD to make the most of her future. I don't know what's available but some kind of part time vocational course must exist? Your DD needs support to lead a fulfilled life.

You do her a great diservice if you don't put more effort into helping her adapt. Perhaps your reluctance to has added to her introversion?

Purely on the compulsory school age thing - the compulsory school age is still the last Friday in June in the academic year you turn 16.

After that, responsibility passes (from the parent) to the teen themselves. And the requirement is to be "participating in education" until 18 (which is NOT the same as full time compulsory education) - it does not have to be A levels, college etc...
In any case, there are currently no sanctions for non-compliance, if the teen fails to "participate in education"

Having an EHCP means the young person can access education support from your local authority - potentially until 25 years of age (although not every young person receives support until that age)

Id apply for an EHCP asap. My DS1 (ASD, anxiety) attends a specialist post 16 provision, they work 1:1 with a mentor, all based around the YPs interest and gain qualifications as they go without sitting exams etc.

There are no consequences for not being in post 16 education, but there are probably other avenues more suitable that an EHCP could help you access.

Has she been assessed and does she have a senco you can talk to?

I think you need specialist advice. Absolutely nothing wrong with planning for her to live at home. I think most young people will do this, increasingly. After all there isn't much point in a putative "independence" that involves handing over 2/3rds of your wage to a landlord who can boot you at with two months' notice any time they please. But that doesn't mean she can't do anything. There are post-16 education providers for young people with disabilities that can put together structured learning programmes and even supported work placements that can lead to employment. Her world may be small but she doesn't have to be inactive in it.

I lives on a street with someone who lived with her mum and didn't work or study from the age of 18 but she did buy a national insurance stamp every week (or her mum did on her behalf). She tried University but it wasn't for her.

I would encourage voluntary work to byild confidence and this couls lead to paid work in the same or a similar field.

Sadly @Gunner1510 my DB took his own life in his 50's. I'd been with my DP for years and I think he knew that once my DP's passed away he'd be living on his own. It makes me very sad when I read these threads where people think they'll always be around for their DC - unfortunately life doesn't work like that

Open university, so learning from home may suit her better. The holistic route e.g. reiki, massage etc might be a good fit?

I would gently but firmly rebuff the idea she can live with you ‘forever’, she can’t, because you are almost certainly going to die before her.

If she never leaves how she’ll fold in on herself, and god knows what will happen when you go, it’s not a kindness to allow this.

It is however fine for her to be a late mover - take your time and Don’t try and solve it all in one go.

I would start by contacting the autism society (and there are others dealing with ASD) and getting hold of someone who can advise on careers for people with ASD, and also some advice on a counselling service (online maybe) to help with managing anxiety for people with ASD

Then get her onto any foundation college course you think will help build her confidence, after that she can move towards a vocational course.

It sounds like she may never earn the money to pay for her own home, so for the near future (in a couple of years) you need to find out about disability benefits to help her rent a flat, you may need to help her with this.

you might have to have a conversation with your son that making provision for her may mean he doesn’t inherit much - have this conversation soon - it will be much easier to accept when he’s young.

Talk to her soon too - explain that living at home for ever isn’t possible, but she can take it slowly and you’ll work with her to find the right training job and home over the next few years.

There might even be sheltered accommodation (public or private) for people with ASD so find out about that too.

What about open university? Can be started from 16 with parental permission and done without GCSEs or A-levels.

I saw a post of a girl who has just graduated age 19 with the OU, with a BA Hons degree. Medical reasons meant school wasn’t suitable for her beyond the age of 16. Might this work? She could get a cafe job or retail job as mentioned above alongside