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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

How can i improve my awful life?

155 replies

Defeatedbylife · 14/11/2021 19:44

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 posts:
Helpstopthepain · 14/11/2021 19:47

Sounds hard op.
Where’s his dad?

Partnersworries · 14/11/2021 19:49

This must be incredibly hard and I’m so sorry you’re going through it. 💐

Could respite care be an option for you? Just a few weeks to try and give you a much needed mental break?

bequietbones · 14/11/2021 19:50

Does he leave the house at all? To go to a specialist school? Has the local authority provided any support?
You need some sort of support - there must be something you can access

Rainbowheart1 · 14/11/2021 19:53

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?)

DrSbaitso · 14/11/2021 19:54

I'm so sorry, OP, it sounds intolerable.

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.

Whatinthelord · 14/11/2021 19:55

Bloody hell that sounds hard. Absolutely no wonder you are struggling.

What is the respite you’re currently getting, is it in home? If so is there an alternative option for out of the home respite such as in foster care or a residential respite.

Have you linked in with any local groups for parents with disabilities so you can access support and share experiences and knowledge with others who understand and know what’s available local to you?

Is he being sent home from school regularly, if so why? Are they not able to meet his need.

You sound like you’re doing a fab job, but your exhausted and understandably life feels bloody hard.

Youngatheart00 · 14/11/2021 19:56

I don’t really have any experience or advice but I just wanted to say your post broke my heart - I can’t imagine what life is like.

I really hope you find a way to find joy in life again. You are a human being deserving of that too x

Philandbill · 14/11/2021 19:58

Would you consider shared residential care? Part of the week in care and part with you?

Notimeforaname · 14/11/2021 19:59

Realistically,unless he is in a longer stay respite or in a residential, it will probably stay like this as what else can be done ?
I'm so sorry you're in this position Flowers

Antonia2021 · 14/11/2021 19:59

Oh gosh so sorry (

Is he likely to have any change in his condition as he grows older ?

Mayhemmumma · 14/11/2021 20:05

I would want to see if I could massively increase respite and accept the fact that you love him but you can not keep going like this - other parents go through tough stages with the knowledge things will change, you don't get this luxury.
Be selfish, make life nicer and your son will have a happy mummy too

TeeTotaller1 · 14/11/2021 20:06

You can't pour from an empty cup my lovely, would he and you be happier in yourselves if he was to go into Residential Care?
You could visit, enjoy activities together, there would be structure to his day with Support Workers and Carers to help him. In turn you would get the rest you need and a routine yourself of which visiting him would be part of.
Please talk to someone about how you feel, he's going to get bigger and stronger and maybe it's time now to start putting a plan into action for his long term care
Take care of you....then you can take care of him
Flowers

olympicsrock · 14/11/2021 20:06

I’m sorry that you are in the awful position. I suspect that you are so tired that you can’t think straight. It sounds like much of what he needs is care. I do wonder whether a residential placement might be best for him . You could visit a few times a week for a few hours where you give him the best of your undivided attention when you are well rested and feeling patient.

headintheproverbial · 14/11/2021 20:06

It sounds awful.

I absolutely echo what others have said about the pointlessness of guilt. You are at breaking point - couldn't residential care be an option?

Do you have other DC? A DH?

Namenic · 14/11/2021 20:08

Could you look into a care placement and visit him there? It sounds like you need additional help as it sounds like too much for one person.

Original poster
Defeatedbylife · 14/11/2021 20:09

I feel 11 is such a young age,hes so vulnerable, so innocent, so challenging, i cant imagine strangers giving him the same level of care and understanding he deserves. He is hard and testing to look after,the thought of anyone losing their temper with him or alternatively being drugged ip to calm him just breaks my heart. Im not saying it would happen for definite but its a possibility that's very real.care homes for children like my son dont have a great reputation.

OP posts:
headintheproverbial · 14/11/2021 20:11

What do you see as your options, OP?

cherrypie66 · 14/11/2021 20:13

Speak to his school about any members of staff who would work additional hours in your home caring for him while you have a break. I work In a special school and many of our young people have people to help from the school out of school hours. You should get funding for it too. You could that way get somebody who already knows your son well which is an advantage Good luck I really feel for you

Original poster
Defeatedbylife · 14/11/2021 20:13

@Antonia2021 no he won't get better ,its a neurological disorder he will have for life,unfortunately hes badly affected.

OP posts:
HereticFanjo · 14/11/2021 20:15

OP I honestly don't know how you are still going and with the best will in the world you can't keep going indefinitely. The shared care thing or respite- can you consider those? Because without them at some stage your mental or physical health are going to snap and then the decision will be taken out of your hands.

I'm so sorry you are going through this Flowers

QuestionableMouse · 14/11/2021 20:16

I'm so sorry. It sounds impossible. Residential care is probably your only realistic option but I can understand why you don't want to do that.

Original poster
Defeatedbylife · 14/11/2021 20:16

@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.

OP posts:
Original poster
Defeatedbylife · 14/11/2021 20:18

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.

OP posts:
Worldwide2 · 14/11/2021 20:20

That sounds incredibly hard. I understand you don't want to put him into residential care but how much respite are you getting? You need a break and not just for a few hours. Do you have any support? What can ss offer?

nzeire · 14/11/2021 20:21

I’m sorry, this sounds so incredibly difficult and heartbreaking. Something does have to change though. A care home may be different for him, better in some ways and in other ways not so much. When we put my grandfather in care, it was bloody awful for everyone, but we visited everyday, got to know the staff and made sure he got the care and attention he deserved. We were very present in his day to day life. Once settled it was the best decision for everyone.
I would start to think about options xxxx