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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

How do i make it better??

25 replies

NotEver0 · 26/05/2021 01:55

My son is 11,severely autistic, non verbal, learning disabled,barely sleeps(three hours a night at a stretch since birth),still in nappies,unable to do anything for himself,needs around clock supervision and support, hes on the go all day long,wont sit for a minute.i have barely left home for the past decade,going out with him is impossible, so hard he runs off or screams incessantly and is hard to catch and restrain.im 43 years old and feel i have no life at all,i feel imprisoned by his disabilities.we have minimum support from SS ,thrèe hours a week respite, a throw in the ocean.hes at sn school when hes able to attend and we are able to get him on the bus.no family support,no one wants to watch him.ive given up everything for him,i no longer buy new clothes for myself,cant stand looking back at my sad drawn tired face,friends have given up asking me out or how i am as its too uncomfortable. Everyone around me is living,im just existing in a sleep deprived,depressed,no end in sight bubble of misery.whats the point of it i wonder??how can i change it or do i accept this is it till hes 20 and i give in and have him put in residential care,hereafter id worry the rest of my life that hes not being hurt or looked after properly?
For some people life really is hell on earth.

OP posts:
Asherline · 26/05/2021 02:47

Have you found any local support groups on Facebook for people in a similar situation.

NurseP · 26/05/2021 02:53

Oh love, I am sorry that you are struggling.

Is there any chance of seeking more respite? Could the school nurse maybe advise of any agencies that may be able to support you?

Is it a physical struggle getting on the school bus? Could anything g help this?

And the 3 hours sleep is awful! Any medication to help?

You really need some help! I think family carers are treated terribly and expected to carry on with barely any help.

I'm Sorry I can't give you practical, hands on help, but sending love and solidarity. You are not alone.

Draineddraineddrained · 26/05/2021 04:05

Where is son's father? He should be doing his share even if you are not together. I'm so sorry you are facing such a tough present and future, it must be incredibly exhausting xx

MinnieJackson · 26/05/2021 04:50

Could you use any of your sons dla to pay for more respite care, even once a month? Your son is very lucky to have you Flowers

saoirse31 · 26/05/2021 06:52

Sorry op hit yabu in error. Sounds so hard, nothing useful to suggest other than trying to use some of time he's in school to take for yourself, whether that's a walk, getting hair done, doing a course of whatever you want. Take care

NotEver0 · 26/05/2021 08:24

My husband helps me put is the only full time wage earner so is out most of the day,the brunt of care falls to me.

OP posts:
Donitta · 26/05/2021 08:30

I think in this situation residential care might be an appropriate solution. The only other option is for you to sacrifice your entire life - and people will happily stand by and let you do that.

NurseP · 26/05/2021 08:54

How often is he managing to go to school?
Can your husband take over from you for 2 or 3 hours one day at the weekend for you to have a breather, go out of the house, even if you sit on a bench and decompress? This is really important. You cannot continue as you are. He needs to support you in looking after your own health. You are no good to anybody once you hit that point in burn out that you cannot return from without medical help.
Please ask the school nurse about agencies and charities which may be able to help you. Are you in the UK? What area are you in?

NotEver0 · 26/05/2021 08:57

Residential care local to us is a hundred miles away,i could never live with giving him away so far away and not seeing him for days on end.the stories of the treatment of autistic kids and adults in these facilities do not instill trust or confidence in me that hed be cared for.i couldnt do it.

OP posts:
NotEver0 · 26/05/2021 15:59

Hes managing school 3 out of 5 days sometimes all days some times absolutely no days.husband works evenings and allday weekends. He helps out all he can.

OP posts:
NurseP · 26/05/2021 16:56

NotEver0. It sounds really tough. Is there another parent at school who can relate? I'm so sorry that you are feeling so low.
There is not enough support for carers.
On at least one of those three days, you need to focus on your well being. Forget the house work and everything else - I know easier said than done, but you have to.

I understand the thought of handing your child over to strangers in a residential unit is terrifying,when you have a child who does not speak, you ha e no choice but to trust these people , you are both completely ar their mercy,but there is middle ground out there, it just takes a lot of searching. And most of the people who work in care are wonderful, compassionate people but the media only talks about the arseholes as its a juicier story.
Pleased something for yourself whilst your boy is at school thos week. Even something as small as a face pack, hand cream, a walk, a bath. Anything.
As the fundamental, biggest cog pulling your household through each week, self care is a must.

DysmalRadius · 26/05/2021 17:11

Would there be any chance of you and your husband both working part time to share the care a bit more? Sorry if that's a rubbish idea, it just sounds so tough for you and I'm trying to think of anything that evens your burden a bit without requiring other agencies to help.

NotEver0 · 26/05/2021 17:32

I just couldn't send him away,i havent got it in me,its a battle of the heart im never going to win at.in all his broken glory,he is mine,i just wish it had gotten easier and not harder as he got older.it was that hope that kept me going,i now realise im most likely going to be changing an adult childs nappy when im in my 60s and will likely never enjoy life or have an empty nest.

OP posts:
littleHen84 · 26/05/2021 17:38

I have no words too add that would make anything better but you sound like a wonderful human being who has put her son first and no matter how hard it gets you are always there giving 110%.

NotEver0 · 26/05/2021 17:44

Thank you little henxxx

OP posts:
NurseP · 26/05/2021 17:46

I couldn't agree more with littlehen. My concern is that you need some support and space to care for yourself.

AliceAbsolum · 26/05/2021 18:09

I don't know how this works and please say if this is out of line - but could you request a residential placement for him? It's not fair on you.

NotEver0 · 31/05/2021 20:27

Such an awful day.is there anyone out there who is in or has been in similar situation for whom life gpt better and easier?could really do with some solidarity!

OP posts:
DavidTheDog · 31/05/2021 20:39

It seems like it all falls on you, when your son isn’t in school your husband is at work. Is it time you both worked part time and shared the care?

Looubylou · 31/05/2021 21:28

Has your son had melatonin to help with sleep?

Loopsisroundthetwist · 01/06/2021 07:08

Hello NotEver0. I couldn’t read your post without replying. You are an utterly amazing Mummy to your son. I hear you loud and clear when you speak of the relentlessness and exhaustion of it all and the loneliness that brings when friends stop asking how you are (am the proud owner of 2 gorgeous autistic wild things myself Grin).
I just wanted to let you know you’re not alone and that it’s really ok to find things hard. If anyone dared to mention that bloody Holland poem to me or god only giving special children... I’d be highly likely to kill them!!
I’m not sure if this would be any help to you, but the trampoline park near to us has a SEND only slot. Quiet music etc. Kids can’t escape, they can all yell to their hearts’ content and no funny looks, just support.
Keep on keeping on Flowers

Billandben444 · 01/06/2021 07:18

I couldn't read and run but have no advice - you're a super mum and I'm aghast at what your life is like. I'm so sorry for you all 💐

Whythesadface · 01/06/2021 07:19

I'm saying this from an outside point of view.
I think you need a break and need a rest.
Can you talk to your husband and see how he feels about maybe letting your son enter residential care and you moving nearer to where ever it is.
You could rent your own house out and get somewhere a few miles from the care facilities.
You need to do this, so you can have some control over your sons care going forward, before it is taken out of your control.

Grimacingfrog · 01/06/2021 07:26

@Whythesadface

I'm saying this from an outside point of view. I think you need a break and need a rest. Can you talk to your husband and see how he feels about maybe letting your son enter residential care and you moving nearer to where ever it is. You could rent your own house out and get somewhere a few miles from the care facilities. You need to do this, so you can have some control over your sons care going forward, before it is taken out of your control.
This.

Your life just doesn't sound sustainable atm. If you lived nearer the residential facility, you could have your son at weekends, sharing the care with your husband, and working part time during the week. Even if there are reasons why you don't want to move, I would prioritise it for your mental health.

Douglasdougle · 01/06/2021 07:34

I’ve messaged you xx

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