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.

I am so sorry you're feeling like this, and sending love to you. You need to do what is right for you and your family, and you desparately need a break and some support, I'm hoping that you can get the help that you need xx

R

Why aren't you entitled to direct payments to get some respite ? My disabled son if nothing like this and I get them ( albeit with a bit of a fight) .. it's not our fault our children are both with disabilities and we need help. Tell the social worker you are on the verge of signing him over and I'm sure they will help . It will be much cheaper to give you direct payments the pay for foster care !!

Oh op. Life is just some kind of shitty lottery. And sometimes the hand you get dealt is just bloody awful. I'm quite sure from your posts that you haven't failed him in the slightest. I imagine you've allowed him and his needs to dominate every waking thought you have - that's love. But whilst I agree with pp that resi might be the answer, I can imagine that decision probably feels immense just now. I really hope you manage to get further respite. If you're feeling on the edge please please talk to someone in RL. Don't be afraid here to say, shout and scream about how unfair the situation is. Because it really, really is. It doesn't mean you don't love him. Disabled child solidarity. Xxx

OP I really recommend you post in SN children. Many people will say that they couldn't do what you do and that a care home will mean that your child will get the specialist help they need. I am going to stick my neck out as someone who has had a fair amount of experience in this area as a mum of two children with disabilities; one of whom also is non verbal and has very challenging behaviour and mental health difficulties.
You are your child's best advocate.
You and your child need more help.
It is not as simple as saying 'oh there will be a care home that will be better for everyone'. Residential care is very variable.Buildingbridges is right to raise this.
You need temporary respite whilst you get good advice and thinking space to decide what is best for your dc and for your family. I would recommend focusing on getting some decent respite first. If social care say no, get your GP on board, ask for a named social worker, get an assessment and consider writing to the councillor responsible for children and young people's services at your local council. Do everything in writing. Try contacting a charity if you need help with this.
Once this is underway, get on the net and make a list of the best residential schools for your son's disability. As soon as restrictions lift, visit and then reassess.

Finally visit your GP. I needed some anti depressants to keep me going while all this was going on.

Yoube not failed OP. Absolutely anyone in your position would feel the same, it's simply not a sustainable situation that any person can cope with for any length of time. Please try not to feel bad about getting some longer term respite, you wont be any help to him if you have a complete breakdown. I wish we lived in a society where we could properly fund care for those who need it.

What would you say to a friend if they told you the story you've written here?

I doubt you would agree she was a failure or that she should feel guilty. Give yourself the kindness and compassion you'd give that friend.

You are a human doing a superhuman job but you need support. I haven't any practical advice to add but I hope some of the other advice you've been given will help you get the support you need. I don't normally do hugs but I'm sending you a virtual one.

You're only human OP, you have given more to your son in his life than most of us can imagine. No wonder you're at breaking point. Take the advice from those that have been there, you are not failing him by asking for proper respite.

Also don't think of it as you being selfish, not that it is, think of it as you also needing to protect your other children from the impact of having a severely disabled sibling. They deserve your time as well, and to have normal childhood experiences.

Everyone can see that you love your son, but you sacrificing everything for him doesn't ultimately help him. You can give him more love if you haven't had to endure continuous physical attacks and lack of sleep.

Wishing you love and unmumsnetty hugs.

OP, we're so sorry you are having such a difficult time at the moment.

We are going to move your thread to the SN Children topic, where we're sure you'll find some great support from other parents who understand what you're going through.

No offence mumsnet I've tried the SN boards before and there is lack of responses,please let my post remain

And OP you have NOT failed. You are the very opposite of a failure. You deserve a bloody medal. But what you need and what all your children also desperately need is for you, their mother, to also have some rest.

Phone SS in the morning. Tell them you can't cope. Ask for emergency help. A lot of SEN schools are open for these reasons. Some can provide respite care or boarding. Similar to those who have to put elderly parents in care homes. Love is still there

Do you have a carers agent in your area to. There great and can give you support to and will know what to do to help you. They can also push as for respite

@RivkaMumsnet I agree with OP, there just isn’t the traffic on the SN boards. I don’t understand why MNHQ insist on moving these sort of posts. Let her also post on SN if she wishes but she’s got far more support already on AIBU than she will on SN Children.

How are you doing this morning?

Sorry OP, it might have been my fault your post was moved, I reported a post that I feel was unnecessarily mean, but I just wanted them to remove that post not move the thread.

Completely understand why you put it on aibu so you got more traffic. I also think it's good to hear from people who aren't going through whag you're going, as naturally most of us are shocked at what you're having to go through without support.

The post I reported was from another SN parent ironically.

OP, I have messaged you.

Sorry things are so hard at the moment. It is difficult for parent carers during lockdown with no access to school/respite.
I really hope you can find someone who will listen and help you.

I have a child who has autism, is non verbal with severe learning disabilities, they haven't been in school since March. It has been very hard going, we're "lucky" that any aggressive behaviour is usually aimed at themselves rather than us so it must be incredibly hard for you all getting hurt.

I'm sure people are trying to be helpful ,but I don't think most posters seem to understand that you can't just Demand respite,respite is very limited even in the best of times and you have i jump through hoops to get even a small amount as for posters saying just put your child in a residential school it's not that simple it would have to be proved that a residential school is he only place that can meet the child's needs ,my friends son has very complex needs and has been out of school for a year ,she's at breaking point and gets zero help , Op I get it ,my son is ten he has severe autism and learning disabilities non verbal ,still trying to get him out of nappies, it's hard very hard,I wouldn't judge anyone who made a decision to try and get a residential school place ,but some need to understand all of this can take time .

@Serialcatmum my sons special school is closed as are all the special school,s in my LEA whilst I don't know about the OP,s child's school my sons school can't offer me any respite or any parent at the moment ,and whilst there might be respite out there ,wanting it and getting it is two different matters the only respite we get is a day a week in the school holidays at a special needs play scheme obviously on hold at the moment and my son has severe autism and learning disabilities.non verbal et c

Yes. Local authorities differ hugely in what they can offer. I worked in an area where there was some respite, but even that didn't go anywhere near to meeting the needs of those families with the most difficult children. Some authorities don't offer ANY. And the availability (or more likely, lack) of residential care is even more varied.

Please don't give this lady simplistic advice when you really don't know what options she has.

I get it @x2boys my family member is also out of school due to corona as special school have said no place for him at the moment. He is non verbal; limited mobility and has complex medical needs

To get respite you have to really really fight in many areas - would really recommend contact a family and IPSEA for advice

Also I think it's really unhelpful on these types of threads for people with zero understanding of what it's like to have a child with complex disabilities to keep on suggesting the Op just puts her child in care ,it's a massive decision for any family and what's right for one family isn't right for another ,also posters that insist they couldn't cope ,well until your in that position you have no idea of wether you could cope or not ,Its a crap situation Op and I do understand I really do.

I agree @x2boys
That is a last resort , the op needs help & support not her child into care.
Op I hope you are feeling better today , please post to let us know .