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.

OP could he go to a residential school during the week and be home at the weekend? That sounds like a compromise that allows you to have a life too and to get some terrible needed sleep. No doubt it will make you an even better mum by keeping you mentally and physically healthier. He needs you around for as long as possible - have you thought of that? If you completely wear yourself out that might not happen. So maybe letting go a little now will enable you to be around for longer in the future. xxx

OP, it doesn't sound easy at all! Do you have any family support at all, even someone to regularly have a chat to?

You are amazing
I would try to get partial support so he is home for part of the week.

I don't walk in your shoes but honestly this is so hard on you with no support.

I’m sorry to hear you’re going through this OP, it sounds really tough.

Your DS sounds very similar to a lad who used to live down the road from us, including the vocal stimming. I knew his mum well.

His mum cared for him by herself until he was 18 and then she had to put him in residential care. He was so big and strong and she just could t do it anymore. She found it really hard at first, like she was letting him down in some way. But once he settled she found that really it was the best decision for both of them. She still has him to stay some weekends, but can enjoy being with him more now she’s not on that constant treadmill, and she can get enough sleep.

Does he get any respite care? You can’t go on doing this by yourself with no break. I would consider residential care in the near future. You won’t be letting him down and you’ll be able to actually enjoy the time you spend together.

Thing is i have family three streets away,a whole big house full of able healthy inlaws who just wont help despite me properly begging them to.They know exactly how hard it is but for some reason are unmoved by any sort of empathy for our situation. My mother in law said we have our own life to live,they regularly care for their daughters healthy easy children,theyve never had my son or helped.

@Rainbowheart1

What’s so bad about putting him in care?

Would it not be best for him to have professional help 24/7? I know your his mother and no one will love him like you, I’m not saying your replaceable, but why would going into care be a bad thing? (Are the care homes horrible?)

Jesus Christ , you’ve not got a clue have you?

You need to put him in permanent care. I know it's hard, but it's the best thing for him. He will not get better, and he won't see it how you do, he won't feel like you have abandoned him.

I dont know what you should do OP but this is what I would do: I would start looking for a residential school (Mon:Fri or term time) with a view to him starting as a boarder, spending weekends and holidays at home with me.

I would do this in part for his quality of life, in part for my own but mostly because I'd recognize that, long term I would not be able to keep him safely and happily home with me so another solution would be necessary at some point and probably at puberty when he'd likely get bigger and stronger than me.

Oh sweetheart, this sounds so hard.
The thing is, I have spent many years working with similar children in a residential school and I have never ever in all that time seen a colleague lose their temper with a child.
They work 8 hour shifts and get 3 breaks in that time (you get no breaks), the children are mainly one to one, so the staff can properly dedicate themselves to that child. Additionally the facilities are fantastic, the children can run off because we have a huge garden and play area, sensory rooms, swimming pool. Honestly I can understand your concerns but if you can find a good school I am sure he would flourish there.

@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.

I have a child who is very similar OP, I won’t try and offer advice or any wise words, just a hand hold. I totally hear you and get what you’re saying. It’s so unbelievably tough isn’t it

In the longer term as he gets older, bigger and stronger you may find you need to consider residential care. To be honest he already sounds too much for one person to cope with 24 hours a day. I think it might be worth starting to think about the possibility of residential care and discussing with social services, especially as respite has not been very successful.

Local NAS -you say you wouldn't put him into care -I get that. But IF you TOLD the LA that this is what you ARE going to do due to the LACK od respite -you might get more. This is what you need, counselling, support but it is absolutely life long with no break or respite. I don't know what else to write -I can put you in touch with several friends in the same position and they have contacts with the NAS etc

I was literally coming on to say similar to the previous poster. My BF works in a really good residential care environment albeit in Ireland and the level of care is out of the park. My friends personality totally suits this kind of work and from the way she speaks about her colleagues in her environment at least it is the same. I think you might be pleasantly surprised by a good residential care environment although I can imagine there is a mix out there too. However in saying all of that you have to reach a point where you know it is the right time for your family so you don’t have to contend with guilt.

I have a child with ASD but nothing compared to your experiences but through contact with other parents I have met others in similar circumstances. It is unbelievably difficult, my heart genuinely goes out to you. It is genuinely too much for families behind closed doors to contend with and COVID lockdowns were a bloody nightmare.

This sounds incredibly hard. I would echo what others have said about residential schools. A family I am close to went down that route with their autistic son. Things at home got to the point where he would lash out at his parents when stressed and they were not able to control him or keep him safe. They also couldn’t go out as he would bolt into traffic etc. Residential school suited him very well. He seemed much calmer in that environment and benefited from the facilities such as sensory rooms. There was a large focus on increasing a child’s independence so far as possible given their disability and he learnt skills which his parents hadn’t ever expected him to. His parents saw him for weekends and holidays and see a lot of him now he is an adult, though he is cared for in his own home.

I can understand how difficult the decision must be but what you are doing for your son doesn’t sound sustainable and you could easily reach crisis point at any moment.

I’m so sorry you are going through this and hope you get some assistance soon.

It may be worth asking yourself why you can't face the idea of him living in a residential care home, even if only some of the time? Is that because his care needs make the change impossible for him, or is it because you'd feel guilty? I've long thought that guilt is a pointless emotion most of the time. He is important, of course, and he matters deeply, but so do you.

I agree. You can't go on like this, or you will end up in care of some sort yourself, and what would happen then? If you find the right place and he gets the best of care your life would change dramatically. It's so wrong that someone can end up in this situation with so little support - in fact it is cruel.

Over the years I've worked with families like yours who have struggled on until adolescence when their child has become a danger to themselves and to others due to their strength, low cognitive ability and impulsivity. The schools have also struggled and eventually requested a full reassessment of the EHCP with a view to twenty four hour specialist provision (special school with residential provision on site). If achieved this has usually been joint funded by social care and education, with the parent/s remaining as involved as they can be. It's not an easy route as funding is stretched for LAs.

I know it's huge thing for parent/s to consider as they have spent years committed to caring and supporting their child so their feelings are very mixed despite the struggles and impact on the family.

Do they not have a residential home that offers respite for disabled children. Our local authority has 2 precisely because as you say it can be hard to find caters to have respite in a foster placement.

It sounds like the school aren’t able to meet his needs if they send him home. Are they suspending him, or calling you and asking to send him home early. I wonder if alternative education provision would help as at least you should have the time he is at school.

Op and @bowchickawowwoww I don't have any words of wisdom but I hope that somehow things get a bit easier for you both.

Do you have a partner op to take some of the pressure off you?

I know it isn't perhaps what you want to hear, but there is some sense in what PPs are saying re residential care. It wouldn't have to be full time immediately, but it is an idea to look in to it on an occasional basis now (for immediate respite) but also longer term for what will happen if/when you are no longer here.

I also have a son with ASD (although different to your situation) but I still worry about what will happen when we're not here anymore.

It's not abandoning him, or not caring to look at other options for the future. And you shouldn't feel any guilt about getting some help. You know you love your son. You will still love him if you have a little help and the quality of time you spend together will likely be massively improved if you aren't at your wits end. Kids with ASD thrive on routine. His routine will just be a little different but he'll likely be equally as happy.

But regardless of what you decide, you are doing an amazing job. We never imagine when we have a child that this might be our life and we do the best with the hand we're dealt. But we're not all dealt equal hands, so just because someone else can cope, it doesn't mean you should have to, or should feel bad if you can't. You deserve a life too. Big hugs x

Not much to add I'm afraid, but you may be able to get some help and advice about your situation from this lady (Jane Raca) who has been through a similar journey in trying to access support:
www.standingupforjames.com/
@janeraca

@pandora206 my experience via work is the same.
Many families struggle to continue through the team years when puberty hits, their children get bigger and they have been ground down by years of career.

Several of the families I worked with afterwards said it was the best thing that happened. I think it also helped them see that their child would be ok long term, even when the parents get into old age.

The sad thing is home care options and respite options are so dire, that theres nothing in between having no respite or care help and a child having a full-time placement.

Sounds really touch, OP.

A friend had a DC with cerebral palsy (not autism) whose physical development level was even lower than your DS - non-verbal, unable even to sit up, couldn't feed himself etc. He went to a residential school, as a day pupil but he stayed there on a residential basis from time to time which allowed her and her DH to go on holiday without him (holidays with him were stressful and complicated and usually ended up cut short for various reasons). The residential school was a sanity saver for her and her DH. It would be great if that was available for your son.

Someone else I know has a DS with autism and other health conditions. Her own parents are both dead and the in-laws will only look after her other, unaffected, DC. I can see how touch it is on her. It hurts that they won't help, but don't let yourself get eaten up by anger and resentment, it will destroy you.

Hope you find a solution.

*touch = tough