To be terrified of what may happen to my son?

[TerrifiedForMySon]

Teenage DS2 has severe learning difficulties and is on the autistic spectrum. He is very able to compared to others with a similar diagnosis but is still at a great disadvantage to his peers.

He has never engaged with education so has no qualifications of any kind and looks likely to be kicked off a college course we put great efforts into getting him on as he won't engage or follow instructions. We have been told there are no other options for him and there isn't. He has no hope of working not only due to his difficulties but because he refuses to engage if what he's doing is not 'fun'. Social services have recently told us he doesn't meet their criteria for services so won't be eligible for sheltered housing.

All we can do now is perhaps apply for benefits for him when he reaches 18 and hope we are around for a long time to look out for him.

Since SS have said he's not eligible for help from them it's dawned on me that we are on our own with him. He's very vulnerable and easily led, still a young child in a 6ft 3 inch body in many ways, he could never be independent. He behaves inappropriately and has meltdowns too.

I have nightmares about us not being around and him living on the streets or endangering himself. Sometimes it's agony thinking about how he could end up , but also agony imagining that he will never leave home and having to put up with him for ever .

He has siblings and I'd expect them to look out for him but what if they can't due to their own lives? He can be very rude and aggressive to them too.

I've also read horror stories of people like him being institutionalised so I'm kind of glad that SS won't be having dealings with him but what kind of life is he going to have to anyway?

AIBU to be so scared for him?

I am absolutely terrified for ds2 too. Another in that black hole of too able to qualify for help but too affected by his ASC to live independently. I had better just live a very long time.

Oh, how I sympathise with you, OP

My DS is of normal intelligence but emotionally is another matter. He has autism, ADHD, depression, anxiety and bowel problems. It’s hard to say which is the culprit for ruining his - and my - life.

He is at college which gives some structure to his day but he really doesn’t like it and I think he may stop going. He spends most of his time there researching courses at university that are totally unrealistic to be honest - medicine and marine biology - and forming plans to enable him to do these things.

He just hasn’t a clue socially and it’s embarrassing as I do honestly feel as if it must be something I’ve done or haven’t done. Yet I know it’s just autism. The other day he was complaining he was thirsty and we were getting on a train - the journey was less than five minutes and I told him I’d get him a can of Coke as soon as we got there but then he went up to two randoms and asked them if he could have some of their drink you can see people looking uncomfortable and then he gets all indignant with me for frantically hissing at him and apologising to the people ... but what can you do? And he genuinely had no idea that was a tad peculiar.

He will not accept any help from anybody, we had a major incident at hospital a couple of months ago where he nearly ended up being arrested but luckily failed the capacity test. The problem is he dips in and out of having capacity and it’s black and white in that moment - if he has capacity they can’t keep him there so he comes home with me even if the minutes later he doesn’t have capacity.

When he’s not at college he watches films. I got him his own TV a few months ago as I just could not take the television in the lounge constantly booming out documentaries on addiction and death and crime! He sometimes goes to the gym, these are the rare moments of peace.

The problem is that he constantly causes unintended but nonetheless serious offence and upset and distress to people. He thinks nothing of saying things to someone like ‘hmm your teeth look a bit stained, they have something weird on them, I can recommend a REALLY GOOD toothpaste if you like’ he genuinely thinks he’s being helpful. I’ve started taking food up to my room because he is like a fucking seagull if I eat in front of him, just ‘wanting to try a bit’ and I know he’s my own son but honestly I don’t WANT someone taking food off my plate!

I’m resigned to the fact he’s got a difficult life in front of him and that in all probability the best outcome for him would be to die fairly young from something non painful. That’s an awful thing to say. There is such a lovely kind person in there but it’s wrapped up in horrible autism and as such it’s so very difficult to get to

He would be classed as disabled within most legal definitions; the problem is that local authorities set their eligibility criteria at artificial levels to save money. It may be worth getting legal advice about whether SS's refusal to help is legal - he would presumably qualify for legal aid in his own right.

juliet how awful for you. I really hope you can find some help for your son ad respite for yourself. It's jsut such a struggle every single day.

I don't think that's an awful thing to say Juliet. I can see how despair might lead you to arrive at that conclusion.

Please don’t put any burden of care however slight onto your other children.

You need to focus on appealing that ss decision. An educational psychology assessment might help if you can find one who can focus on your sons inability to function independently. It is an awful situation. You need supported living for him. He could then live with other young adults and be supported by a suppirt worker to do some work but also to enjoy his life and look after himself. I would start by looking into evidence of his needs and then seek help from some of the disability charities. You should also aim to get a local mp on board to help.

I agree with a pp - you need to do some further poking around to check what pathways for existence may exist. It is possible that whilst he lives w you these may be few but I would be surprised if supported living wasnt an option for the future.

Ime (father, dementia) ss can be less than frank about what is available whilst family is willing/able/prepared to fill the gap. We had to engage a solicitor and file a dispute with adult care services before they'd even respond to our phone calls.

We have made it very clear to DS1 that as cruel as it may feel that when DH and I are no longer available to care for DS2 that he is to not agree to care/support his brother when SS try to put it on his shoulders

...pathways for support...

choc that’s all very well and good but I’d be interested in how you would enforce this when you are, you know, dead!

Genuinely, I’m not being an arse but what would you suggest?

There are some really heart breaking stories on here. I know how horribly hard this can be as a family member, but not as a parent which must be even worse. It's when young people kind of hover on "not been disabled enough" which is the most horrible thing to think and say.

One piece of advice that we found really helpful from a support worker was when asking for help to describe the worst days not the best. It feels mean like you're running someone down but when you stop and think of all the things you do (almost without thinking) then it becomes harder to deny he has support needs. This might be things like reminding him to drink, supporting bathing by lying out the tools and turning on the shower and reminding him what a proper wash is, you might need to choose his clothes because he wouldn't wear weather appropriate. Basically anything over and above that which you'd be expecting to do at his age that you do because he has a disability. I don't suggest this lightly, it'll make you sad and scared but it helps you make a better case for support. It could also be a jumping off point to decided there are some things you could work on with him in him taking them on. But I do understand that some won't feel/be achievable for him.

I'd also recommend asking to be assessed as a carer, I'm a bit rusty on the regs for carers of children but it does sound as if he has a disability and therefore you'd qualify. You can perhaps get a bit of time/peer support/practical help from this so don't dismiss it. You have legitimate needs too.

Whether there are services to support these needs is a while other battle I'm afraid but at least he may have some funding and you can get creative about how to use that to support him.

It might be worth seeing if there are any local LD charities. They might focus on advocacy or befriending. Both sound like they might be useful.

I'm sorry that you have to go through this. It's appalling how bad services are for people with learning disabilities

I'm shocked that you don't understand why the staff at the college are so upset about your son just wondering off.
Every member of staff is responsible for safeguarding the students in their care, if one wonders off then they are the person who has to account for them. Suppose he wondered off and something awful happened to him? That would be the end of that teachers career.

You need to understand how important it is that your son is accountable because if you don't understand then how can you try to help your son to understand.

Hello,

I have two teenage sons (17 and 19). One is on the autism spectrum; the other is not diagnosed but has exhibited avoidant behaviour since Y9. Both are essentially NEET.

My eldest is in supported accommodation (a residential placement that is staffed 24/7). He has been there for a year and a half (since his 18th birthday). He engages in some of the activities provided, but is no closer to participating in voluntary work, education or vocational training than he was when he lived at home (he stopped attending school in Y10).

My youngest resides at home and is searching for part time work. However with no qualifications, references and a history of not committing, his chances of finding something are slim.

I worry about both my sons. They do not have learning disabilities, so many of the services for individuals with LD are not available for them. My eldest rejects his diagnosis of autism, but his unstable mental health and vulnerability helped to secure a supported placement.

I worry less about my eldest because he has a team of people around him to keep him safe. However, my biggest fear is the onset of severe mental illness caused by their social isolation and the fact that they are aware of how far behind their peers they have become.

My advice would be to try to work with whichever agencies are involved with your son. When a young person engages in nothing, we become their carers and it can be extremely restricting. Supported living is not perfect for my eldest, but I could not occupy him or keep him safe on my own.

Incidentally, I work on a supported internship programme and when I spoke to a member of the LA who support the work, she said there were very few young people who were NEET now. Perhaps that is because the ones who do not engage with services, simply do not appear in the statistics.

You'd think SS would point you in the right direction wouldn't you?

We have an autism initiative which Helps take young adults to some form of work - low paid pocket money jobs which fill a few hours - they have things like a garden center and grow crops to sell to keep the project going. There's a woodworking shop which mainly sells individul items - look these things up

I'm not sure whereabouts you are, but please have a look at Birtenshaw School and College. My small DS has just started in the new Liverpool one and it's changed our entire lives for the better.
They do college support till age 25. They help families with support outside of that too, they teach a lot of life skills (even my 4 year old is learning to wash dishes!)

He's autistic, not a king. Sounds like it is really super important for him to learn that even children have to learn how to do unfun things
Some autistic people just can’t learn this, unfortunately. Although I do agree that it would be good to put a lot of effort into trying.

OP, do you claim DLA for your DS?

Do you attend any parenting support groups for children with SN? This is often how you find out about support, etc available in your area.

Just a thought. If in the future you want a service for folks with a learning disability. His IQ tested at 70, it’s not an exact science. There is a margin on error on the test so actually all we can say is we are 95% sure his iq is between 65 and 75. This is what the test says. He also clearly had problems in daily living skills so you could argue he meets criteria for ld.

I work for a disability charity who can really support and guide you. It may or may not be helpful but some can help where SS can't. Please try getting in touch with SeeAbility, Mencap and the like. If they don't operate in your area they will tell you which charities do.

There are several small charities near where I live who provide supported living in a community setting for people with Autism and similar conditions. They are all extremely nice places with caring people.
However if your som doesn't Want to go there I am not sure what you can do....so sorry.

his paediatrician who initially diagnosed insists there's no evidence to warrant it and we have to go through her to get a referral to a different paediatrician apparently

Whereabouts are you that you cannot have a second opinion? See your MP.

PIP applies from age 16. Get as much written evidence as you can from people he's been and is being supervised by, especially about the running off and anything he does which is different to his peers.
Ask them to write an honest account, most people in that situation sugar-coat the reality, tell them to write about all his behaviour which is different to his peers as it actually is.

Keep a record of every time you're contacted about his behaviour and what actions were taken.
Create a paper trail. Keep a detailed diary of his different behaviour.
I know it's a lot to do, but the more evidence you can compile now, the stronger your case is for a detailed assessment and PIP.

You have to be 'that parent' he cannot fight for himself, nor advocate for himself.

Do look at all the online support to help you claim PIP, lots get turned down initially, appeal, appeal MR if you need to and go to Tribunal. lots of advice about how the face to face assessment is carried out here www.mumsnet.com/Talk/am_i_being_unreasonable/3404180-To-ask-for-some-advice-on-DHs-PIP-meeting-tomorrow?pg=1

He's autistic, not a king. Sounds like it is really super important for him to learn that even children have to learn how to do unfun things
Sounds like it is really super important for you to learn about autism.
OP has enough on her plate without dealing with comments like yours.

Does he have an EHC Plan?

He's autistic, not a king. Sounds like it is really super important for him to learn that even children have to learn how to do unfun things

Gosh. As a parent to two children with autism, that just never occurred to me. Easier said than done. Please educate yourself.

As for the suggestion to just google "how to teach autistic boy how to clean," etc., I'm going to have to simply leave the comment that every child is different, and autism presents differently in every child. I have two children with autism, and they are utterly different - they learn differently, they react differently, they are triggered by different things. Yes, as a parent we research things - but it's generally not "google, followed by light bulb moment."

OP, I am in the same situation as you, more or less, although my two dcs are pre-teens. I home educate them, so a fair portion of their education involves "life skills" focused on trying to teach them skills they will need to live independently, although it's definitely an uphill climb. I'm watching this thread with interest for any suggestions that may be of benefit for us as well.

There are some good suggestions here but you should not expect your children to take responsibility for your son unless they are willing. I worked with adults with a learning disability and in this situation it caused a lot of resentment. Those whose parents were not around anymore and whose siblings were expected to be responsible for them put them into residential care rather than look after them.

People can make a career out of playing video games on things like Twitch, but (I’ve never watched any of them) I imagine they need to have good ‘banter’ to go along with it! Semi serious suggestion: what about tree surgery if he loves climbing trees and hitting them?! Could he apprentice to a company?