I resent my disabled child

[Meandyou02]

Another day ,another handful of my hair torn out,a bite on my shoulder which has not stopped stinging since 4am this morning when he woke and inflicted it,3 hours sleep for me for 14th night in a row,non stop crying for reasons he cant tell me(non verbal) followed by non stop laughing .pinched arms all day long.hate that I'm still wiping his bum up to 10 times a day and hes far far to big for it and kicks me with his big string legs on my face or anywhere and gets muck everywhere in the process.theres no chance he will ever be toilet trained.SS have said theres no available respite.I hate it,hate that hes ruined my life and my other kids life.hes been a screaming demanding nightmare since he was born.no sleep no enjoyment, theres nothing about him that brings any happiness. I am at the stage I seriously think I need to give him up to social care.but I love him,what the hell can I do.im in a living hell.people judge those mothers who kill themselves and take their child but I completely understand why they do,sometimes there is no answer ,no help great enough.

Twinny can I ask what genetic condition your ds has that presents like CP?
My son also has one. As well as ASD. He has something called hereditary spastic paraplegia.

OP no judgment from me. In fact you have strength I couldn’t not ever imagine.

I used to teach children with severe disabilities how to swim.

I take my hat of to you.

You have all my sympathy. Your feelings are natural and entirely understandable. If I were in your position, I would do what you are considering doing. It doesn't mean you don't love him. You are a good, loving mother and you do not have to be a martyr. You really don't.

Poor you. I feel for you. You need increased support and space to think. Respite or temporary placement.
Try not to feel guilty. You need a break.
It can be hard to access help through Social services. I’d seriously consider putting him in residential. I really couldn’t do the caring.
Do you have carers coming in already🌺🌺🌺
Be kind and treat yourself with compassion. Xx

No judgement here.

Sometimes one of the hardest things we have to do, is recognise when someone we love - be it a child or a parent or another relative - needs more care than we can give them.

It sounds as if you have reached that stage with your child. His needs are such that a professional care setting could be better for him - and allow you to step back from being his 24/7 carer and instead focus on being his Mum.

As PP have said, in a professional setting they have the the regular changeover in staff which means that it's not draining one person dry - every shift means someone new and rested to come in and help look after him.

I know through experience in my wider family, that in cases like this you have to be very clear and unequivocal about the fact that you are not taking 'no' for an answer. And also that you have to be very firm and persistent in the fact that you cannot and will not look after him anymore, and that SS must find him a care placement.

What an incredibly difficult situation! I personally would never judge a mum for not being able to keep caring for a disabled child. You could make the decision based on what is right for the majority of your kids which would mean ensuring they have a happy and well rested mum!

@itsgettingweird he has a rare condition that means he has part of the tip of chromosome 14 missing

I am so sorry that you are in a difficult situation. It sounds like you are a great loving mum who is exhausted and at the end of your tether. You are not superhuman and need help. No shame in that at all. I echo what others say which is to tell social services you cannot cope any longer so that they take you seriously

Don’t let SS fob you off, it’s a disgrace that you haven’t had help/ respite.

Who cares for the carers op? No-one it seems. You simply cannot go on being a full time carer with no respite because it will break down and this is where you are heading. You must have some respite. You need to tell your social worker this and say you are close to breaking down.

This has certainly put my problems into perspective op. I am a grandparent carer for teenage boys and I sometimes feel overwhelmed but force myself on. I also have another grown up family and five gcs. This is nothing to what you are going through and I have such admiration for you. There is no shame in how you feel op.

I had a choice between caring for my dm with alzheimers or taking on the children. I could not do both. I still feel guilt but I know I made the right choice as you will do for you.

Have you had a carers assessment from the local authority? You may be able to get respite or other support via this route.

No judgement here OP, I know how I feel when my children lash out and hurt me, and mine have nowhere near the level of need your DS has. You've been superhuman to cope this long.

Please play hard ball with ss, they won't do anything which costs money unless you do. if you have to, tell them you will be leaving DS at their door at 5pm and mean it. If you haven't got the strength left to fight get the GP, your MP, anyone to do it for you, but please do it.

I've cried so many tears for this boy since he was born,in fact I think I have cried more than I haven't.i feel so much guilt, my heart actually hurts with the stress of it all.ive failed in life for him and my family.ive tried and thrown money we dont even have at every single therapy, fad,alternative medicine, classes to try improve him ,his behaviours nothing has worked.hes getting two days respite at his special school for only 4hours a week,they cant offer more and the thought of summer holidays without even this minimal support makes me want to jump off a cliff.family cant and wont help.
Thank you for all the kind words

Please call ss for a emergency assesment. They can do this and explain to them your at your wits end. Dont let them fob u off. I understand as I went through the same for many years and they only gave me respite once. Dd is early 20s now and still hard work but I manage now and work part time which is my saviour.

OP I think I would call social services and get him taken into care. This is seriously impacting your mental and physical health and that if your other children. There is no shame in not being able to cope with this. No one could x

OP, it absolutely breaks my heart that SS offer respite and support to a Carer but not the biological parent of a child with additional needs. The system in which we live is so flawed and unjust.

I have no words of wisdom, but I send you love and compassion. Life can truly be a bag of absolute shit.

No words of wisdom here but I just want to day my heart goes out to you. No one will think any less of you for pushing for more help.

Aww no judgement from me OP, I have a non verbal son still in nappies and whilst he's very placid and gentle I know how unrelenting it can be.

I hope you get the help you all need

I would seriously consider residential care op.

ive failed in life for him and my family

You have NOT failed him, please do not think that. You have done everything, given everything you possibly can. There is nothing more you can do. You NEED an extended break.
You are in a position you never planned for, would never have chosen.
Let go of the guilt and push for residential care.

My dd is autistic but an adult now and did progress (she's about 5 years behind on most things except academics) I have the bite mark scars, she fractured my leg, and at lockdown I moved in with my partner because I couldn't cope with her (her dad lives around the corner and she's semi independent). It's bloody hard even high functioning! If I can help you I would - even a 3 hour break is like a holiday!

Twinny thanks for sharing. I find it all so interesting. Ds has a protein fault on a gene found on chromosome 12 which means the UMN are basically deteriorating.

I'm so sorry you're in this situation. No one could ever understand unless they walk a mile in your shoes.

I have no advice but I hope someone here does

You have absolutely NOT failed him. You cared for and supported him since day 1 above your own needs and those if your family.

There is no shame in that not being sustainable for any longer.

OP,

please call SS and tel lthem that you need an emergency assessment.

It may indeed be time that, for everyone - including your son - to be able to have any sort of reasonable life, he should go into residential care.

You describe an older child's strength. Soon that will be an adult's strength. You are clearly not able to cope with this alone and do personal care if you're being attacked. If your son was in residential care, this would be done safely with more than one person.

You have other children. You are right, this must be impacting them hugely. And what if your son injures you or worse? Who will be there for them then?

And, emotionally. You are a wreck. And sleep deprived. And presumably unable to work.

Can you imagine how much better a quality of interaction, of communication, of love, you would be able to provide for YOUR SON as well as your other children if you were able to sleep, work, and heal?

Of course you love your son. Putting him into residential care where his needs can be met SAFELY and you can become someone who can actually mother him and love him and enjoy spending time with him, as opposed to enduring him, is possibly the biggest test of all.

Carrying on like this is not the best way for anyone. Please call SS.