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.

When he gets older will he have to spend his life with you? I feel so bad about his disorder and I hope he can somehow learn to do things for himself it must be so hard having to cope with his screaming and other things where’s his dad ? He needs a dad for you to go to work how do you earn money do you even earn money?

Would industrial or motor racing ear plugs help?

www.specsavers.co.uk/hearing/hearing-aids/hearing-protection

That’s a smart idea for earplugs

[quote SpaceshiptoMars]Would industrial or motor racing ear plugs help?

www.specsavers.co.uk/hearing/hearing-aids/hearing-protection[/quote]
Your very smart @SpaceshiptoMars

You should go back to the social worker and say your at breaking point which it sounds like. They have a duty of care to you and your son. It shouldn’t take months to arrange an increase to anyone’s package of care. The cost of an emergency placement or residential care is huge compared to care at home. Also ask for a copy of the current single assessment so you can see what needs have been identified or missed. Shared section 20 foster placements are hard to come by but it’s worth them adding your name onto their waiting list. I would also ask for a overnight direct payment for once a month to allow someone else to care for your son whilst your in the home initially to allow you to get some rest.

I’m assuming it’s been paid for via direct payments? Have you tried getting Carers from an agency? They are more expensive however will often work with more complex children.

Are camhs involved at all? Might be worth asking for an assessment? I know you say you don’t want your son on strong medications but there are a number of medications at different levels or prn meds that may help.

My heart absolutely goes out to you.

I'd echo everyone else but also say that now is the time to get this sorted as puberty will bring changes which might tip this from barely tolerable to completely untenable.

Please don't feel guilty. This is way more than most of us could think of handling.

Hello OP, similar to many others reading this thread, my heart goes out to you

It seems that you are coming to realise that you need - must - make some kind of change, but that the idea of others looking after your son is breaking your heart.

From your replies it also seems that - very understandably - your biggest block to looking at residential care options is fear that your dear child could be treated badly. This is a horrendous fear to have to work through, on top of everything that you've done for 11 years. I am in awe of you.

So getting to the point of trusting a residential care home would be the biggest priority for you. This will take some work to get to. Carefully researching options, visiting (more than once maybe), finding other parents with children there to ask for their honest views. You need time.

Bearing in mind what others have said about puberty potentially being a very difficult time for your son, would you feel able to start researching some options for care now, while you have time on your side to really find out about a place and work through your questions... ie start looking into it now, before it becomes so urgent that you may have to make the decision in a rush?

What you described about having family 3 streets away who don't help you ... There are no words to respond to this ....

My friend had a similar situation. He's 25 now. She put him in care eventually when he was about 20 as he became increasingly uncontrollable but not before she became addicted to alcohol as a result of the stress as far as I could see.

[quote Defeatedbylife]@bowchickawowwoww im up North,thank you and sorry its as hard for you.i find it so hard to muster a smile nowadays looking in the mirror is hard,i look awful,broken and haunted. I used to take such pride in my appearance. My son too wont get on the bus, some days it take three of us including the bus driver to practically lift him on.[/quote]
I think you must look into a permament residential home. There's just no way that your current situation is sustainable for you or him.

There will be a number of staff on duty at any one time, and they will be going home at the end of their shifts so will get a break and be ready to care for him again after they've rested.

You'll be able to have a life again, be rested, and can enjoy the possibility of more fun times together, rather than wall to wall drudgery.

Residential school
Go see them
They can give your ds tge 24 hours care he needs
Look it s not giving him away it s giving him what he needs so your time with him is looked forward to

(Ds asd asd non verbal, had overnight respite from age 10
You need to be looking at Residential settings
Like priors court and others

You have to trust others to card for your ds
You have to believe there are places where he will thrive
So you can have a life too

Go visit Residential settings and talk to other parents
The truth is these settings can provide structure aNd care for your ds
Go visit them
Spend time
Talk to staff

Don't dismiss them out of fear.

Have social services offered /considered continuing healthcare assessment for your son? From what you state, his needs are intensive and it may be the case health can provide more hours for you in terms of respite at home or residential care, specialist care catered to your sons needs. Please ask them if he hasn't to date.

@bowchickawowwoww

Where are you located OP? I live exactly the same life with my 10 year old ASD son. We hardly leave the house. I can't work as he is with me 24 hours a day 7 days a week. He doesn't sleep until 4am. He refused to get on the school bus every day and in the end the school asked me to homeschool as it didn't make the school look good. I have no idea what I'm doing and have been offered no help. I stay home and don't talk to anyone apart from my son (not that he understands me) For months on end. I'm a single mum, as his dad walked away when he was diagnosed. If you'd like someone to chat to, I understand what you're going through OP

I didn't want you to go unacknowledged.

I have a son with autism so have some insight into what that might be like but he is not nearly as severe.

@Defeatedbylife

We broached the subject of shared special foster care with SS,they said its impossible to find families who'd take on a child like mine.

Sadly they are right . They will also struggle to find respite carers for him.

So You need to tell social services that you cant cope any more and they need to find specialist residential school for him. He can still come home at weekends ( if it’s near enough ) and on school holidays.

It’s not the same as putting him in care, you would share his care with the school. They have whole teams of specially trained staff who will work with him around the clock and they can do so much more than one person - however devoted you are. Remember they work shifts and do maybe 40 hours a week compared to your 168 hours .

You can’t go on like this - eventually your physical or mental health will go and your son will need accommodated in an emergency . Which is less than ideal - much better to take time to find the best possible placement for him.

The only way to get this for him is to tell SS that you can’t cope any more. If you just ask for ‘help’ they will do nothing. Trust me on this - I’ve been there.

Care like this is very expensive and all they care about is their budget. But that’s what people like me pay our taxes for - to give your son and other kids like him the best possible care. No one deserves this money more than your son and your family. So don’t feel a moments concerns when they whinge about money to you - it’s not your issue.

I’m sorry to have to be so blunt. I know this isn’t what you want for your DS. We all want to be enough as parents but that’s not always possible. Your challenges as a mother are superhuman ☹️

@Defeatedbylife

I keep thinking if i can just get him to adulthood then id feel better about relinquishing some care.SS have given him.12 hours a week ,after a mental breakdown this year they are reviewing and going to increase ,however its been months of me asking and they are still awaiting to get it signed off.they said id get 20 hours.thing is finding stsff to use those hours is near impossible, they sometimes dont turn up or there arent enough of them.in the midst of my breakdown they said my only option was to give him uo or carry on with the most they can offer,which i cant properly use!i get the feeling they are uncomfortable with my sons needs and my pleas for help as they dont know what to offer.

Neither if you will survive to adulthood like this.

Please please go visit all possible Residential schools within one hour and get the wheels in motion .

In the right setting with trained staff your ds will thrive.

It s just not possible to give your ds what he needs 24/7, no one can do that

See it as for him

Your life and his does not have to be awful.

Tomorrow get up and call all the possible Residential special schools in the county and beyond and visit in person or online.

Start the ball rolling.

This is not "giving up", you get power and control choosing a setting .

Then you visit or he visits when you strong and rested.

@WeMazeUp

When he gets older will he have to spend his life with you? I feel so bad about his disorder and I hope he can somehow learn to do things for himself it must be so hard having to cope with his screaming and other things where’s his dad ? He needs a dad for you to go to work how do you earn money do you even earn money?

No he won't @WeMazeUp

There are supported living schemes and residential settings for even the most complex needs and they often thrive.
With the right support staff .

Have a look at Dimensions
Creative Support
Outward
And other schemes who support adults to live their own lives and keep in touch with family

And what s with "he needs a,dad"?
He needs trained specialist support

OP I am so sorry.

I agree with TreeSmuggler and others -

"What would you do?

I would put him in residential care immediately, sorry OP, there isn't any other choice is there?"

This is what I would do.

A residential placement could be the start of a brand new and happy life for the two of you. You are not giving up on him by choosing this route and he will still be very much part of your life.

I hope you both get the help you need.

You are not beneficial to your child if you cannot cope due to the most overwhelming of circumstances. You owe it to yourself and your child to put him into residential care. It does NOT mean you love him any less, it means you will have more time, patience and loving to give him because you are not so knackred. I have a T shirt...

As kindly as possible, OP:

There is only one life able to be saved here, and it's yours.

You're burning away your health, your sanity, the irreplaceable years of your one life, and at some point, probably not in the far future, your health will simply break down. You'll be in crisis and there will be no other option but a residential placement of some sort, but the chance for some control will be past.

This moment is a gift. You have recognised your situation is unsustainable before you broke down altogether. You have the chance to plan ahead, to start the process of finding your son the right residential arrangement, in which there is every chance he will thrive, so that you can save your own valuable and worthy life. That is now the best thing for both of you.

Please please look at residential care. No they won’t love him like you do, but they also won’t care for him the way you do. They will be professionals and have resources at their disposal to stimulate him more. There will be many hands to help when out in public so he will get out more, they will focus on activities that you would never be able to.
You are working yourself into exhaustion, your son would benefit from the structure and opportunities of residential care and also having 100% of his mum on visits home/ your visits and quality time. Horrible I know but my cousin has sever autism with all the same challenges listed, at 19 the decision was made for full time care and honestly she’s thriving. She was hugely overweight at home as my aunt and uncle couldn’t control tantrums/kitchen access ect. Now there is no kitchen…… but she still benefits from structured activities to fun and amazing places. My aunt could no longer bare to leave the house with her due to her behaviour and others reactions - now my cousin gets on the bus ect with her carers has a more for filling life.
My family have benefited so much from residential care, there was nothing worse than to look at your aunt with a broken nose and black eyes from a kick during a pad change whilst her heart broke because of knowing no-one could ever love and care for her daughter like her……….. and she was terrified of the what ifs that could happen to her vulnerable child when she wasn’t there.
These fears paralysed her, break down after break down.
she’s very very vocal now that my cousin should have went into care sooner. She feels pride that she coped when it now takes 3 full time carers and is at peace that she did her best for as long as she could.

@Defeatedbylife Be kind to yourself, you are worth it. You have to stay strong for those you love and sometimes, just sometimes, we have to take a different route that will benefit all of us. xx

I follow a page called Catherine Newell and Autism on Facebook about a woman with a teenager with severe autism. He does spend part of the week in care and she talks in depth about her decision-making process around putting him in care. It sounds like it was absolutely the right thing for her and for him, and it sounds like she had a very good experience of the care system.

When he is at home (at the weekends I think), Catherine is also assisted by carers. I wonder if it might be worth following and perhaps reaching out to her? She is very involved in the autism community and comes across as a lovely person generally.

But whatever happens, you need more help OP and you can’t go on like this.

Oh sweetie - now is the time for residential care (notwithstanding @Takemetothe90s comments)