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 i had my breakdown and asked SS for help they said other than increased respite theres nothing we can offer you,so would i want to put him in care,of course at the time i was shocked and said no.i dont think my son couldnt be housed in a normal care home so im assuming there must be a specific special needs care home??ive not heard of one catering to disabled kids so what exactly are SS suggesting when they say are you wanting him in care?i think the idea of residential school would be a good thing to think about,but why havent SS mentioned this when ive cried my eyes out on the phone so many times, when i had a breakdown they placed my son in a temporary breaks respite centre but that was it,no other solution. It obviously costs alot ,ive looked and SS kept going on about limited funds, cutbacks etc.i think the chances of getting paid for residential schooling is slim,we are in no position to fund ourselves.

@Boo65, im so sorry you too have had it so hard and still do.its so heartbreaking and hard isnt it?my son is my greatest love but also my greatest pain. i sometimes dream of him as my son without autism,its hard to not feel sorrow for the things hes unable to experience and enjoy,right down to the simplest pleasures of eating anything and sleeping fitfully.
Thank you for your offer,so kind.i wish i could open a commune for mothers like us and our children to live together supporting each other,a facility that was there that you could go to whenever you felt overwhelmed and needed help.
I wish you and your son peace xx

This sounds so very hard for you.

You can love your son very much AND not be able to care for him full time, it's OK and nothing to feel guilty about.

I would also recommend investigating residential schools. I visited one a couple of years ago and there were children with a wide range of special needs. They boarded at the school Mon - Fri and went home at weekends. It was very different to how you might imagine 'in care' to be. The children all looked happy and settled, and the staff had a genuine passion for what they did. I've also been involved in homes for challenging disabled adults in the past, and again the staff were amazingly dedicated and caring. These are difficult jobs and not well paid, so no one lasts if they're only doing it to earn some money and don't actually care about the people they work with.

Would a residential school be through the local authority rather than SS ?
You have my sympathy.

Residential school would be through the educational provision in his EHCP.

You can call an early review of his EHCP. State that you can no longer cope at home. State that the current school are struggling to meet need (sending him home etc) and ask for change of placement to a school with residential options. It would be a good idea to get SENDIAS involved to support you and help you explore your options.

@Defeatedbylife

I dream of those things too, his brother and sister often wonder what kind of person he would have been, what job he'd do etc (they're 32 and 33)
Same as your son, mine has eaten the same few things for 25 plus years! I know he would love to go on a big cruise liner but he wouldn't eat.
Be safe in the knowledge your son was given to you because he's very very special, I know it's a small thing and it's a very lonely world, I have very few friends because I'm sometimes embarrassed of his behaviour and turn down invitations etc, but you are not alone, it probably doesn't help at this time.
I'm new to Mumsnet and not sure if there's a private msg feature, but if you'd like you can email me xx

@Defeatedbylife

When i had my breakdown and asked SS for help they said other than increased respite theres nothing we can offer you,so would i want to put him in care,of course at the time i was shocked and said no.i dont think my son couldnt be housed in a normal care home so im assuming there must be a specific special needs care home??ive not heard of one catering to disabled kids so what exactly are SS suggesting when they say are you wanting him in care?i think the idea of residential school would be a good thing to think about,but why havent SS mentioned this when ive cried my eyes out on the phone so many times, when i had a breakdown they placed my son in a temporary breaks respite centre but that was it,no other solution. It obviously costs alot ,ive looked and SS kept going on about limited funds, cutbacks etc.i think the chances of getting paid for residential schooling is slim,we are in no position to fund ourselves.

Most such schools don't allow private funding They are full of kids who are being lpaid for by local authorities If you don't push and ask you won't get You have to say this is what you want and this is what is best for your child. Your local school might back you up Talk to them If they say they cannot meet his needs they will support you to apply for a residential school

@2reefsin30knots

Residential school would be through the educational provision in his EHCP.

You can call an early review of his EHCP. State that you can no longer cope at home. State that the current school are struggling to meet need (sending him home etc) and ask for change of placement to a school with residential options. It would be a good idea to get SENDIAS involved to support you and help you explore your options.

This It might vbe tri funding from ss education and health Or just education and social care EHCP covers allareas

would i want to put him in care,of course at the time i was shocked and said no.i dont think my son couldnt be housed in a normal care home so im assuming there must be a specific special needs care home?

He still has to be educated
Wherever he lives
Ask what "in care" means
Maybe they mean 52 week residential school setting
Look at residential special needs schools within two hours travel
Google search.

Not read the whole thread so apologies. My cousin is severely autistic and thrives in a residential home. A local vicar's first child was also severely autistic and also now lives in a home and is happy and settled.

It's ok. Sending strength and love to you.

Sweetheart,your life seems most terribly hard and I feel for you.I would maybe look again at some residential care .You sound like a terrific mum who is at breaking point! You have to look after yourself first as no one can care for another until they are well .The fact you have so little sleep and the constant noise must be dreadful . Have a look ,some of the homes are great with love and care from the staff.It will be a wrench but you cant carry on as you are .Sending hugs to you xxx

Sorry, I don't know how to quote, but in answer to the OP's question about care homes, there are specific special needs residential homes which cater for children with very complex needs. I work with several students who are resident at such homes full or part time or who go for regular respite. This is funded by SS.

if you think a residential school could be an option which might be suitable, it might be worth talking to your son's existing school to see if they could help you to navigate the application process. Residential school costs can be and regularly are, paid by local authorities, although there is often quite a fight to get them to do so (no surprises there).

OP I am so sorry you are in this situation. It should not be a battle to get the support you and your DS need. I really feel for you.

A few things that have helped me:

• joining really good local Facebook groups for parents of autistic children. We are a wealth of knowledge and help each other. Sometimes you only want to vent to people who actually understand what you are going through
• ABA therapy. It’s been a lifesaver
• Finding respite care through local charities
• Becoming really educated on autism and all the co morbid conditions to look for
• Taking some out for myself each and every day, even if it’s just a cup of coffee uninterrupted in the garden
• Getting a disabled parking pass

Be kind to yourself.

I would have no qualms about sending him to a residential school. You've had an incredibly tough 11 years, and they're better than you might think. My friend's severely autistic non-verbal 14yo loves her residential school.

Find communities online that will help just through matter of experience, like a Mumsnet for autistic parents.

@Defeatedbylife

I would really encourage you to post a question about finding a residential school on the SN chat board.

There are lots of very experienced people there and also a few posters with a lot of knowledge of the legalities of who funds what, and how you access it.

I can completely see from your posts that you haven't got the strength to fight the system and keep making phone calls and being fobbed off by social services. (And what an absolute state our country is in, that you have to fight to get what so clearly is yours by rights.)

So you may need to find someone to advocate for you and help you. Again, someone on the SN chat board will advise you better than me, but you should have a local Sendiass service for free support and advice, and you may have a local charity who provide support for families with disabilities.

If you would feel comfortable posting the county or area you live in, I'd happily try and find some contact details of who could help you (but you may not want to post your location, that's fine)

@Defeatedbylife

When i had my breakdown and asked SS for help they said other than increased respite theres nothing we can offer you,so would i want to put him in care,of course at the time i was shocked and said no.i dont think my son couldnt be housed in a normal care home so im assuming there must be a specific special needs care home??ive not heard of one catering to disabled kids so what exactly are SS suggesting when they say are you wanting him in care?i think the idea of residential school would be a good thing to think about,but why havent SS mentioned this when ive cried my eyes out on the phone so many times, when i had a breakdown they placed my son in a temporary breaks respite centre but that was it,no other solution. It obviously costs alot ,ive looked and SS kept going on about limited funds, cutbacks etc.i think the chances of getting paid for residential schooling is slim,we are in no position to fund ourselves.

I used to work on a children with disabilities team and left because of the awful system and how terribly children and parents were treated.

Social care won’t mention the possibility of residential schooling to you, as it is very expensive for them and they’ll want to avoid that at all costs.
However specialist private provision does exist and local authorities do fund placement with them (priory is one example we have local to us). Usually though it’s after either a long battle or after a crisis has occurred.

If it is residential and education most likely, as someone else said, it would need joint funding from education and social care.

I agree with a previous poster about asking for the EHCP to be looked at again. Start keeping evidence of every time he is sent home from school and why. Some schools don’t like to say they can’t manage a child’s needs even when it’s clear they can’t, but that needs to happen to trigger looking at other school placement.

If you feel like this is too much to manage contact your local SEDIAS and ask them to advocate for you or if you have a friend/relative who will support.

When I was working at CWD we had several children enter full time placement after struggling at home for too long. It usually turned out really well after a period of settling. However we are lucky that we have several specialist schools in our area that cater for children with high levels of needs so contact with families was more easily maintained.

Once again I’m so sorry you are having to struggle alone.
Hopefully someone on the SEN board will be able to offer advice specific to your local area.

Realistically a lot of young people with this level of autism do need the structure routines and facilities that come with residential school, rather than fostering in a family setting. And imagine if your DS didn't have to get the bus to school every day because school was right there - wouldn't that be better for him? He should not need to be sent home from school often, that suggests that the school he is in now isn't fully meeting his needs. So residential school might be sensible and good for him.

SS probably haven't suggested residential school themselves because they focus on Care and that is Education. And because it's expensive. But if his present school are sending him home regurlarly well that's (illegal) exclusion and a sign they're not meeting his needs. In which case he should be entitled to a place at a residential school - though as with everything else you may have to agitate for it.

have family three streets away,a whole big house full of able healthy inlaws who just wont help despite me properly begging them to.

Your family sound harsh but they are not trained professionals who have chosen a career in caring for children/young people with disabilities. He would probably get much better care from people who are!

This is so sad 😥 you love your son and he will always have that love. But if you carry on the way you are with no help, no sleep, you will end up ill or even worse. And your boy will have no one.
It's very easy to say put him into care, if you are not in the position, but its not the same as abandonment or giving him away. You would be giving him a life and giving yourself a life. You cannot carry on like this because all you will feel is resentment towards him,
Get the best, give him the best that you can.

This must be so hard I know you said you won’t put Ds in to care but I think you need to consider it. You deserve to have a life. Putting ds into full time care, doesnt mean you won’t see him regularly, you will.

Start keeping evidence of every time he is sent home from school and why.

^^ This is good advice. It only needs to be a notebook in your kitchen where you scribble down the date and time the school phone you, and the reason they gave that they're sending him home

eg "Tue 16 Nov 12pm, Ms Jones called & said DS is doing X and they are sending him home early".

I know everything is incredibly overwhelming for you right now, but try if you can just to do this, because it creates hard evidence you can use in future weeks if you feel ready to start taking action re EHCP review / looking at residential placements.

PS I'm aware there are so many posters on here and we're all suggesting ideas and things to do, I hope you don't feel bombarded.

I think everyone feels for you so much and is in awe of what you're doing for your son.

PS I didn't mean to imply that you weren't giving him the very best of care yourself - of course you are! You sound like an amazing Mum. I was just saying that professional carers might be much better than your other family.

One of my friends had her DS out of school for more than a year before she was eventually given a place for him in a specialist weekly boarding school. His presentation of ASC was different from your DS but the school really looked after him and took his needs into account and he was able to feel confident and able to learn at the residential school which he hadn't elsewhere.

Meanwhile I think the diary suggestion is a good one. I hope you and your DS get the support you both need and deserve.

Speak to your local parent partnership

@Boo65 may i ask what medication your son is on to calm him?what age can they take it from?,i can then ask my sons pediatrician about it.thank you for reaching out,you sound like a wonderful mother,your son is lucky to have you.

Please read what @2reefsin30knots has said.

You need-

1. carers assessment in your own right for your own needs
2. full reassessment of EHCP including s17 social care assessment
3. “waking day curriculum” named as a provisio on the EHCP
4. residential placement

I’d throw myself at SOS SEN, IPSEA and Coram, and push like mad to get ALL this formalised. The system is shit, but this is how you work with it.