How can i improve my awful life?

[Defeatedbylife]

Since my son was born 11 years ago, my life quality has dramatically decreased to the point of non existence.He was born with severe Autism and severe learning disabilities, hes completely non verbal ,doubly incontinent,unable to feed,dress wash himself or walk for any distance.Hes in nappies and has a wheelchair as he runs away and seems absolutely unable to walk in a straight direction. He cannot follow instructions. His main form of stimming is Vocal screaming ,continuously, not triggered by anything, just something he does 90%of the day. Indeed this is the worst part of his Autism,i crave peace like a addict craving alcohol.
Leaving the house like this has become so hard that we,ve had to stop altogether as its actually impossible with his stimming/screaming to go anywhere and he detests his wheelchair.

I love him so much but his condition has without a doubt ruined my life. I am unable to work as i have to be on standby for any number of reasons hes sent home from school or just wont go.Additionally he sleeps no more than a few hours each night,(hes on all the medications hes allowed)he has to be watched for safety so ive not slept properly really since he was born.

I loved life prior to him,would never want to sit it,loved fitness,meeting friends, trying new things,going places.Its now impossible to do anything other than housework and look after him.but i hate that it is,i can't go on till the end of my days like this can i?no i cant put him in care,i just wouldn't.
What would you do?
I need perspective, experience, help please.

He does have SS disabilities involved but only has limited respite which most of the time falls through as its hard getting two people for his level of care.

Hi,you need to contact social services and say that you need more respite.
You have to be brutally honest how bad this is affecting you.
In my experience you have to be seen to be at breaking point for SS to step in and provide the support you need.

I also have a son 13 who has severe autism,non-verbal,ocd and basically needs 24 hour care as he hardly sleeps.
Also have a 9 year old who has some social difficulties,anxiety and gender identity issues.

We are in the process of trying to get our respite increased as been going through a particularly hard time lately with both boys.

I understand completely how you feel and it is so so hard to live this life.

Take care
Xx

Also sending to you OP

OP all the difficulties your son presents now will be multiplied, some massively so, as he goes through puberty and his teens. Getting him to adulthood in your current setting is going to break you. Please, for both your sakes, get residential care organsised ASAP, preferably full time, as weekdays in care and weekends with you will probably unsettle him too much - you can think about that in years to come.

Do it now, while he IS a child, you will not be abandoning him, you will visit, you'll be involved, and you will be mentally and physically stronger for it. Do it now, because if you break - and you will - where does that leave your son? Do it now, before he begins to grow into an adolescent, and a young man who you can't physically cope with. Do it now, and let him thrive with all the professional care and facilities that will help him to make the best of his individual challenges.

He will have no perception of time - as in years past, and weeks, months, years to come. Don't beat yourself up for feeling you haven't sacrificed enough of your life, you need to be looking forward now and getting a safe situation in place before you are incapacitated yourself.

Not wanting to put him in residential care is totally understandable.
I cannot believe pp's are so flippantly suggesting it.
Is there a fb support page? I often see similar posts on ours and others offer company.
Having someone who understands in a similar position would be great for you, have a glass of wine while the house falls down.
Set yourself a goal for when he is in school, visit the local gym twice a week.

Of course it's understandable, and no one is suggesting it flippantly. But this situation is impossible and just can't continue.

OP can't write the option off. For one, it's doing a disservice to the many amazing devoted and highly skilled carers out there who have made their career out of this. Plus the homes themselves who have great facilities, take residents on outings and organise activities for them. Is every place perfect? No, of course not. But people can really thrive there as pps have described.

I am so sorry you are experiencing this.

I looked after my severely disabled father for over twenty years before he died. I think you need more help and a break. (stating the obvious- sorry). I know it is really hard to find the extra energy to fight social services/ get them to help you more but you do need to do it.

I would suggest simply writing a short email to the council leader and Local Authority Chief Executive, copied to your MP (in my experience I wouldn't bother writing to junior staff), explaining that you can't cope any more and you are passing the responsibility for/ risk of everything breaking down to their organisation as they have done so little to help so far. Perhaps if you are too tired to go through it all again , just send them a copy of your Mumsnet post? I would say something like - your child is extremely vulnerable and you need help NOW- not in twelve months time. That if they don't help you soon (either providing you with a sufficient budget to get extra care or with suitable carers/respite directly) you will have no alternative but to send him to them as you simply cant cope nor give him the life he deserves.

Unfortunately with local authorities being so poorly funded it is only when something becomes a crisis that , in my experience, they help. Social Services were quite happy to let me continue to care for my disabled father even when it. became clear that I couldn't cope alone (lifting him up on my own without any specialist equipment etc) - it was only when it nearly became a safeguarding issue that they did anything.

We also experienced problems getting suitable carers - the local authority paid so little we had to top it up to attract people who would stay and were helpful (they could earn far more working in supermarkets).

You do have to fight sometimes for the help you need which can be hard, especially when you are exhausted. Please ensure that what help the council offer is genuinely enough- we have all accepted less than what we need just to be agreeable/not to appear greedy but often that can still lead to breakdown. The forums on Carers UK can also be helpful for giving support and ideas of what you might do.

I am so sorry that you are going through this. I genuinely think that only those who have been carers fully appreciate how awful the situation currently is. I used to try and think of three things that had been good each day - sometimes I couldn't think of any so we'd celebrate memories of good times. It is so hard and I am sorry you are going through this. I wish you all the luck in the world.

I know you've said you don't want him drugged up but would sedatives give your son any respite, i can imagine screaming 90% of the time would be physically demanding on him too?

Really feel for you. My dd is autistic and challenging but not on the level that you are experiencing. When my lovely mum got dementia five years ago I had to make the agonising decision to put her into care rather than care for her at home as with me being a single working mum in a tiny flat I couldn't have coped. The guilt I felt was indescribable but the lovely care home staff said we'll care for her needs so you can be her daughter. So when I visited her I was her daughter not her carer. I know it's not the same as your situation but it's similar in that the home will care for you boy and you can be his mum.

absolutely echo what others have said about the pointlessness of guilt.

If only we could turn off our feelings of guilt then ! It's not as simple as that is it?

@EmeraldShamrock

Not wanting to put him in residential care is totally understandable. I cannot believe pp's are so flippantly suggesting it. Is there a fb support page? I often see similar posts on ours and others offer company. Having someone who understands in a similar position would be great for you, have a glass of wine while the house falls down. Set yourself a goal for when he is in school, visit the local gym twice a week.

The only way to get a true break is overnight respite care. There are some places (ds went for respite up to 7 days at a time to a NAS boarding school) But realistically the ds will truly benefit from a 24 hour curriculum This is not just zbout op It is about a setting which can cater to the ds needs and benefit ds

If your child was great at ballet you would send him to board at Royal ballet school
Tonnes of kids go to boarding schools for multiple reasons and it is not called "putting into care"

If your ds has needs which cannot be met at home because as op admits her life is awful then consider residential setting
Op retains all parental rights.

I'm so sorry that you are having to deal with this especially as it's just you and your son. It's hard to imagine anything more difficult. I hope the posters on this thread have at least encouraged you to look into residential care.

God luck to you and your son. I hope things work out for both of you.

I have a screamer too (aged 12) and I had a breakdown about a year ago. He screams and sings loudly most of the time. We are pushing social services for more respite. I have realised over the last year that I have to prioritise my own health or I am not able to look after my lovely boy at all. It is better to have a couple of days quality time with him a week than days and days where you are barely coping and can't do anything either of you enjoy. Please look after yourself and remember you are not on your own in this.

Like you OP I have a 30 year old son with challenging behaviour, autism (non verbal) and a severe learning disability.

I feel so sorry for you, it's a long hard road.
I wish I had put my son into residential care when he was younger, but like you I was unable to. Now he's older, I'm unable to go out without someone coming to 'baby sit' him, I can't do what I want when I want, I have a job I don't like because it fits around him. He does now go to two social enterprise firms 4 times a week after being kicked out of countless ones throughout his life. I could go on and on, but my advice to you is seek out a reputable residential school for him, I know they are few and far between but I wish I had done this when he was younger. I just didn't have the strength xxx

@Boo65

Like you OP I have a 30 year old son with challenging behaviour, autism (non verbal) and a severe learning disability.

I feel so sorry for you, it's a long hard road.
I wish I had put my son into residential care when he was younger, but like you I was unable to. Now he's older, I'm unable to go out without someone coming to 'baby sit' him, I can't do what I want when I want, I have a job I don't like because it fits around him. He does now go to two social enterprise firms 4 times a week after being kicked out of countless ones throughout his life. I could go on and on, but my advice to you is seek out a reputable residential school for him, I know they are few and far between but I wish I had done this when he was younger. I just didn't have the strength xxx

Ah @Boo65 can you not look into residential care now. If you told adult social care you are no longer able to look after him they would have to find a placement for him.

@Whatinthelord I have been considering it over the past couple of years. And you're exactly right, you have to say you can no longer cope, and you are unable to care for them. I don't want to have to say that, but the SW told me that's what I have to do. I'd like him to be settled in his own home without me before I get to that point. He's so funny sometimes and we love him so much, (he's also a complete nightmare sometimes too) but I don't know what it's like to be 'normal' at my age (I'm 56) with other grown up children and a grandchild.
It's so very hard, and I can only empathise with OP, my son's thing when he was little was to escape from the house, one time he climbed out of the skylight and was standing on the roof (he was about 4)
Someone knocked on my door and said 'I don't want to worry you, but there's a child standing on the roof of your house'
So many incidents like that, thankfully he's calmed down!

@Boo65 honestly I think a lot of people don’t realise how all encompassing being a career can be. Major hats off to you for doing it for so long.

It’s such a shame that the state of social care means for a lot of people there is nothing/inadequate support until you’re a breaking point and need s full time placement. It’s dire.

@Boo65 i too feel like the constant and relentless nature of caring for him has left me with no will or fight,the thought of calling SS once again,going over it all once again, to hear the standard pity response and the standard have you tried xyz or theres simply no budget,or the one which annoys me most the deflecting from the issue,have you had an updated mental health assessment?!my mental health is solely wraped up in our home situation and the unsupported burden i carry.i sometimes feel mine is too uncomfortable a situation and they would rather pass me to any other service to get me off the phone!

@Defeatedbylife

You can't carry on, I'm in tears (that's not like me) for you and for myself. I know how much you must love him, and it's heartbreaking that you have to make the decision, but from my own experience it will be for the best.
No one can understand how it is caring for these children/adults, you have to fight for your own sanity and health.
The daily struggles are immense, the nasty comments, the stares, the tut tutting. When my son was little, he would bite, scream, kick, headbutt etc, Thankfully he has improved over the years, he is on medication too now, which has helped, can you try medication for your son for the short term? It helps my son to focus a bit more and not be so angry. I'm not sure where you live, but I would gladly come and help you if I could, even so you could take yourself off out for a couple of hours.
Thinking of you ❤️

[quote Defeatedbylife]@Boo65 i too feel like the constant and relentless nature of caring for him has left me with no will or fight,the thought of calling SS once again,going over it all once again, to hear the standard pity response and the standard have you tried xyz or theres simply no budget,or the one which annoys me most the deflecting from the issue,have you had an updated mental health assessment?!my mental health is solely wraped up in our home situation and the unsupported burden i carry.i sometimes feel mine is too uncomfortable a situation and they would rather pass me to any other service to get me off the phone![/quote]
I understand. But you don’t ask then for help. You contact them and say that you can’t cope with your son anymore and they need to take him into care. Then you follow it up with an email. They hate emails and any kind of paper trail.

That’s the only thing that works. The only way to get around their excuses.

And it also happens to be true - the first part at least.

Of course before you do that, you check out all the residential options for your son, as PP have explained. So you know where would work for him.

Social services will palm you off forever. They don’t care about you or your son, they only care about money.

They will never pay for a placement while they think you will do it for free, regardless of the harm to you and your child.

But they WILL have to pay for a residential placement for your DS if you can’t do it. Because they won’t get a foster carer to take him because of his complex needs.

@Boo65

Like you OP I have a 30 year old son with challenging behaviour, autism (non verbal) and a severe learning disability.

I feel so sorry for you, it's a long hard road.
I wish I had put my son into residential care when he was younger, but like you I was unable to. Now he's older, I'm unable to go out without someone coming to 'baby sit' him, I can't do what I want when I want, I have a job I don't like because it fits around him. He does now go to two social enterprise firms 4 times a week after being kicked out of countless ones throughout his life. I could go on and on, but my advice to you is seek out a reputable residential school for him, I know they are few and far between but I wish I had done this when he was younger. I just didn't have the strength xxx

Look at supported living. He can live near you with 24 7 carers. Start tge ball rolling

ou have to say you can no longer cope, and you are unable to care for them.

But also that for the young person they need structure of 24 hour curriculum in residential setting

It s the young person's needs as well

you can’t cope with your son anymore and they need to take him into care.

Handing over to care system
Is not the same as seeking residential placement where op continues to be the parent legally responsible

Op dies not need to offer him for adoption /full time Foster care
She can be the parent who seeks a suitable residential school placement

Part of that consideration , and paying for it, might be family circumstances but also the needs of the young person to have structure of 24/7 curriculum
Frame it as what the child needs which op cannot give

Op start saying my child needs a placement which offers xxx and yyyy
Research them look at them visit them

@Embracelife

Op start saying my child needs a placement which offers xxx and yyyy Research them look at them visit them

I agree that this is the ideal . But social services will smile and nod and say mmm yes that that must be hard but we don’t have the money.

They will only pay when they have to. That’s when it’s an emergency ( ie his care at home is breaking down ).

ATM the Op has a problem - she’s on the edge of a breakdown. Her son has a problem - he has needs that can’t be met 24/7 by one exhausted person . But SS don’t have a problem .

You need to make it their problem.

I’m afraid that asking nicely will get you nowhere. Presenting a case for the wonderful care provided at x school with Y specialist staff will get you no where.

I know it’s hard to accept this is the system. Everyone wants to believe that care is needs based. It’s not, it’s who shouts the loudest.

Parents / carers of children / young adults with profound additional support needs have very small voices. They are just getting on with it, loving their children and living lives of quiet desperation.

Op dies not need to offer him for adoption /full time Foster care
She can be the parent who seeks a suitable residential school placement

No one is suggesting that she place him for adoption. They can’t even find fosters carers let alone adopters for NY teenage boys. No one is queueing up to adopt young people like the Ops son. I say this by way of reassurance to the OP and not in any way to disparage her son or other children like him.

Social services like to threaten this - I know a family who were told that they couldn’t get respite care for their child because after two years the respite carers could apply to adopt him. This is so much nonsense but it
Stopped the family asking for respite. Which was the objective of course. Their marriage broke down with the stress.