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.

I used to be a carer, and helped with a lovely family, a single father and his grown up nonverbal asd son. It was hard on his father, he adored his son, they clearly loved each other, but his son was twice his size, could sometimes get violent when upset (his triggers were sometimes a mystery, we suspected some undiagnosed health needs at the time), and in the end, the father found him a care home. I recently heard through the grapevine that the young man is doing really well there, his health has improved, and his father visits regularly. It all seems like the best options for them both.

Only you can make a decision about full time care, but consider this - right now you are doing the work of 4 different people, working on shifts, and you're on your own. Simply put, you cannot carry on this way forever. It's impossible. If there is any way at all to lighten the load and get help, I encourage you to do so. Your son deserves the best 'you' you can give him, and that means you need sleep, for a start. You need time to think, to breathe. That isn't wrong. It isn't bad to need that. Giving this to yourself will ultimately allow you to give more to your child.

I'm sorry you're feeling this way. It's no surprise. You're carrying so much. You can find a way through.

I’m so sorry op, my friends son is similar and she did care for him and it was hard, eventually he went into full time care at 21, he had become violent and it was impossible, he has four carers 24/7 and he loves them, they work in shifts of two, so he always has two carers with him at any given time.

She face times him or visits him daily, he has his own iPad. From what I can see of their calls he is just as happy and doesn’t really have the same emotion about going into care as she did, as in he doesn’t really know he’s in care, that’s just where he lives now, to him, he doesn’t really understand it in the same way as she does.

Honestly for her, I think she held off so long due to the guilt, she felt guilty and continued as long as she could. In reality they are all much happier and she would have been better doing it sooner.

I really feel for you OP.

Is there anyway you can get more help? From family or could you pay someone to come to your house maybe one day/ night a week or more. Then you could keep an eye on them and your son could get to know them, and then once you’re comfortable you could take some breaks. Maybe even have a night off a week away from home if that’s an option.

Please don’t feel guilty for trying to give yourself as much of a break as you can - even if it means part time care. You can’t look after him if you don’t look after yourself. Probably obvious but have you joined social media groups for parents of kids with similar issues - may be good for advice and support x

@Philandbill is what I would suggest. I'm a nurse working in the community and many patients I see spend some of the week at home with parents and other part of the week at home in a residential setting. It works really well for both parents and patients mainly I see young adults but they have had this arrangement for a while. They have lovely relationships in both home settings.

[quote Defeatedbylife]@cherrypie66 thank you, i will try this,although i dont hold much hope,hes often sent home as they cant calm him and he literally wont stop screaming crying for hours on end.[/quote]
You may be surprised. Some of the most challenging children at our school have members of staff that really adore them. You may find one of the staff would appreciate extra hours looking after him at home at the weekend or a few hours in the evening on a regular basis

What we can do here is make you not feel guilty about making yourself a priority. You love your son dearly and you’ve done an amazing job, but you need to now act for you, if you don’t, realistically how much longer could you cope? It sounds like the time has come to make this impossible decision.

What would you do?

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

Different condition but my brother was extremely handicapped and many years ago now my parents made the decision to place him in care. It was very much the right decision, he was just as happy, he was (is!) very well cared for and receives specialist help which really focuses on things he likes and needs. One point you need to consider is what happens in later life when you can no longer provide what you do now or indeed at all - proper care would be much harder to find at that point. You are losing your entire life at the moment but he is not necessarily losing by being in an appropriate care setting. Perhaps you are really seeking a blessing to take that next step - I would take some time to really think about what is in all of your best interests. Best wishes, it sounds so unbelievably tough.

Hi OP, I have some experience of what these settings for providing care are like, and I do understand your reservations but have seen some that are really positive. That provide support from care workers who do care, and routine and friendliness in a supportive environment. I do think it’s worth exploring with SS/whatever medical support you have. I thoroughly agree with the pp comments that you are a person who deserves to live too, and that there is only so far you can go with support you can offer - residential care or other support doesn’t mean you’ve failed. It means you’re acting in your child’s interests to give them the support they need while giving yourself the support to be the best possible
Mum to them. I wish you all the very best and do keep us posted on here if that’s helpful

@Defeatedbylife

Does your son have an EHCP?

Have you looked at residential schools?

I work in a special school and your son sounds v similar to a lot of kids at my school. My heart goes out to their parents it really does, I can’t imagine how exhausted you must be. I have to say though that all the staff at my school genuinely care about the children we work with. We work really hard to not only keep the children safe, but keep them stimulated and happy and developing in whatever ways they can. We have amazing facilities and resources and training and also a whole team of people to support us and come up with strategies together for dealing with challenging behaviours.

Do tell the school that you need extra support, as a PP said lots of staff work additional weekend hours doing respite caring.

Not really sure what I’m really trying to say here other than I can’t even imagine how hard it is for you, and also don’t feel bad about asking for extra support especially as in my experience most carers for autistic children are great - caring and professional, and your son will, I hope, be in safe hands.

Residential care, where tbh, they're much better equipped to look after him than you are. What happens when he's adult, OP? When he's bigger than you, still screaming and struggling? He won't be young, vulnerable and and innocent then. What happens when he reaches puberty and he starts getting sexual needs? Come on, OP, see the light.

[quote Defeatedbylife]@Antonia2021 no he won't get better ,its a neurological disorder he will have for life,unfortunately hes badly affected.[/quote]
So sorry ( on your shoes I would 100% look at residential care. You aren’t abandoning him you are getting the help you both need !

Loads of kids go to boarding school at 11!

What helped my family in this situation was to think about what would happen to him of something happened to me or dh. What would happen if we were injured and needed a hospital stay etc.
We came to realise that it would be better for everyone to transition to residential care/supported accommodation before it became a crisis. To start the process without any pressure. Obviously you are under immense pressure and you must know that you can’t sustain the current situation.
Keep on at social services. It’s sad but true that sometimes the squeaky wheel gets the grease! Ask for a carers assessment, ask for any and all support that you are entitled too.
Unpaid/family carers take a huge load off social work departments but aren’t always well supported in return. Look for local charities that can offer support to you and your son because there are people out there that can and will help

My aunt was in the same position as you, she always hated the idea of residential care, but reached a point where she just had to change something. Its changed their lives, she loves the time spent with him now as she also has time for herself- she can occasionally leave the treadmill rather than it constantly be running at full pelt and exhausting her. It was a big leap of faith, and in the back of her mind was worst case she could pull him out if it wasn't going well.

Of course it's not a solution for everyone, but if you think it would help, you are important too, and there are some wonderful settings out there.

Residential care isn’t giving in or giving up.

I just wanted to say that adolescence is a very difficult time with children like your son. My experience from a family member is that it is likely that you’ll struggle even more when he is physically bigger and harder to control.
I know it’s hard but I would consider a residential home now so he’s settled before puberty kicks in.
If you get any push back from SS, I would tell them you are on the verge of a breakdown and can’t do it any more.

I’m really moved by your post OP and by your love for your son. I absolutely wish you the best and if you were my neighbour I would long to help and there must be good people out there somewhere as it’s so wrong you are alone with this.
I know two carers near me (a husband and wife team who look after 3 adults with severe difficulties) who are so full of kindness and generosity to everyone I would trust them with my life so just occasionally it’s worth seeing if there’s any option that feels comfortable as you can always decide not to.
Does your DS have a dad who can give you some time?

I would put him in residential care, I don’t know what other options you have. This sounds completely intolerable.
You poor thing

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.

I have a friend who put her son in care, and he is incredibly happy. She is 5 foot and he's 6 foot 2, and with the autism came absolute blue fits that she couldn't physically handle. It was gut wrenching for her, but he is so happy. He comes home on weekends, and home.for special.ocassions, but looks forward to getting back because of the routine. I'm not saying it's the right fit for you, but wanted to share the seriously limited third hand experience I have.

It sounds incredibly tough, and sooner or later your body will revolt physically or mentally, so you are doing right by looking for solutions.

I dont have any to offer more's the pity, but was wondering about local support groups which may now meet online. They'd be the people that know.

Huge hugs and admiration, you are incredibly strong to be doing this at all. Xx

I’m so sorry to hear how hard life is for you - supporting your son sounds really challenging and doing so on little sleep - well, my heart goes out to you.
I don’t know if this is relevant or not but I thought I’d post it - my husband works as a carer in a residential setting for young adults (so older than your son) with complex needs (including those who have autism). I know he cares for a number of people who are non verbal, have very limited mobility, and have double incontinence. I know that he has great respect for the people he cares for, and their parents - who are still very much involved in their lives. He’s not the only one at his place either - sounds like his colleagues are all very conscientious. Perhaps when your son is older you could imagine him living in a place like that, for part of the time at least? I can’t imagine how hard it would be to have your very dependent child be entrusted to others but for your sake, I think you need to have some kind of quality of life and caring for your son full time is just doesn’t seem compatible with that.

Oh my dear, this is unsustainable . For your own health and sanity I would urge you to look for residential care. Maybe he could be home a couple of days a week and you would be refreshed and able to enjoy your time together a bit more. It’s too much fir one person .

Does he have a safe room or safe bed. A place you can leave him even to go and get a cuppa?

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