To find it so hard to accept my life?

[Defeatedbylife]

My son is disabled, no chance of an independent life ever.Today im finding it so hard to accept.Im finding it so hard to watch other families around me planning trips, taking their kids to different places having fun with them.i cant enjoy my kids because of the restrictions my disabled son has put on all our lives.my son hates being outside and screams non stop after a few minutes, doesnt matter where we go,theres no calming him.ive tried everything, ive lost count of the amount of times weve drove somewhere as a family and drove home within minutes of arriving.ive lost count of the amount of times ive wiped away my other kids sad and frustrated tears.six long weeks of being cooped up indoors lie ahead and i feel like climbing into bed and never getting out.im so jealous of everyone with a normal life.
Not looking for anything by writing this post,just had to get my feelings out.

My heart goes out to you OP. It must be so so hard. Your other kids are important too. I think you need to try and find the strength to kick up a fuss and demand more help. You cannot go on like this.

is there any medication like Retinol to help? (sorry, i am very clueless, but i understand it must be very hard)

OP I have no personal experience but do know of similar situations and it sucks. However, you are doing an amazing job, and you do need to recognise and tell yourself this from time to time. Sending very un-mumsnetty hugs. And by the way, to the 3% saying yabu, give your heads a wobble. 💐

@GeorgiaGirl52

Are there any residential care homes available where you are? You do have other children and you owe them a duty of care and a mother who is involved.

Shame on you for that last sentence @GeorgiaGirl52

I think the Op’s post was about ‘finding it hard to accept this life’ and not about solutions for her child but more about how to find a way of enduring her life. The two are inseparable.

@Defeatedbylife it reads like you are enduring rather than living. What would make things more bearable for you? What are the if only things that would get your head above water?

@Blue4YOU

Will posters please stop recommending residential care? This child can’t speak or understand why his mum would send him away as the OP said. He’s only young. It’s true family life as per regular families won’t happen easily but there has to be understandable reasons why people don’t just give their children away. Would you give your young baby away if life was tough for you (understandably) and the rest of your family? No, you would not. But that’s essentially what is being suggested. I want to cry for parents in this situation. It’s fucking shit! I thought I’d have support when I had my daughter. What a delusional person I was to expect that. Just give her to strangers..? Fucking hell

so what do you suggest for the OP?

Medication is worth trying if possible as a PP said. If something hasn't worked, go back so doctors can try something else.

You could speak to social services or any professionals involved and ask their advice/options?

Such as places your son could go for respite or on some days and stuff.

@Blue4YOU

Will posters please stop recommending residential care? This child can’t speak or understand why his mum would send him away as the OP said. He’s only young. It’s true family life as per regular families won’t happen easily but there has to be understandable reasons why people don’t just give their children away. Would you give your young baby away if life was tough for you (understandably) and the rest of your family? No, you would not. But that’s essentially what is being suggested. I want to cry for parents in this situation. It’s fucking shit! I thought I’d have support when I had my daughter. What a delusional person I was to expect that. Just give her to strangers..? Fucking hell

I understand why this is a touchy subject, but the OP has made it clear that her child isn't a "young baby".

Residential care, where your child is being looked after by people who are trained, and who have time off and so are well-rested, can be liberating as much for the child as for the rest of the family. It doesn't mean you never see them again. It does mean that when you do see them, regularly, your relationship can be a very great deal better because nobody involved is at the end of their rope any more. It can also be a way to build better sibling relationships, because the other kids aren't quite so resentful of the child with disabilities. (And this resentment is often mixed with much love and guilt, on all sides.)

Residential living may not be right for OP's family at all, but please everyone, don't dismiss it as "sending your child away". It can be the right choice for some children, not just to give their families a break, but to enable the child themselves to thrive.

OP, however you manage (or not), I hear you. I hope you get more, and better, support.

I have so much respect for you. I wish I had some words of wisdom to pass on. I genuinely hope you find a way to make things easier for you and your family.🤗

Sorry, OP, it must be awful. I’m childfree, so no advice, but never feel embarrassed in public when he’s feeling his emotions, no one is thinking badly of you or him, I promise.

@Blue4YOU

Will posters please stop recommending residential care? This child can’t speak or understand why his mum would send him away as the OP said. He’s only young. It’s true family life as per regular families won’t happen easily but there has to be understandable reasons why people don’t just give their children away. Would you give your young baby away if life was tough for you (understandably) and the rest of your family? No, you would not. But that’s essentially what is being suggested. I want to cry for parents in this situation. It’s fucking shit! I thought I’d have support when I had my daughter. What a delusional person I was to expect that. Just give her to strangers..? Fucking hell

What an unhelpful and sanctimonious post.

Some parents have no other option than RC. For others, RC is more beneficial to the child than remaining in the family home so they make a selfless decision, knowing full well people like you will judge.

Either way, I expect the guilt of doing so could be overwhelming. The last thing anyone in this situation needs is to have to read all your over-emotional bullshit.

bottom line is unless i request residential im pretty much on my own [....] the only thing i look forward to is being asleep

OP ... request residential. You sound absolutely at the end of your tether. Just do it. You and your other children deserve to have a life, not just an existence.

I was in your position a few years ago...... Well times two as both my dc are disabled and we had no respite.

I rang ss and insisted they were going into care, and I damn well meant it (( well I didnt but their SW didnt know that)) 4 nights a month overnight respite and 8 hours a week fell from the sky.

Dramatic, absolutely. But I'd probably be dead by now without it. I was on my knees at the time, the toll on my mental health was horrific.

And there's absolutely nothing wrong with looking at the option of residential care...... Most children thrive in it. It breaks so many unhealthy patterns. I've seen kids who were whirling with misery be transformed in a way that just couldn't happen at home because there weren't 6 staff members taking a turn for a few hours at a time then coming back after a full nights sleep and a rest......

@Defeatedbylife How old is your LO? Have you had an assessment from the council for them- I don't know how it works but maybe they're eligible for some help, care assistants sometimes etc?

@me4real

I'm not being funny but if you don't know anything about it, why not assume the OP does having lived it for years, and given she says she has knocked on all the doors and accessed the (paltry) respite care she has been allocated, that she has already been assessed by the council and pursued help. I really think it's important to read the OP's posts properly on a thread like this and not just talk off the top of your head, as she's on the edge and doesn't need people making her feel even more like she lives in a totally different universe to everybody else. I'm sure you mean well but come on.

OP it sounds unbelievably hard and relentless and I admire you so much. You say your youngest is almost a teen; how old are all the children? Do you have a partner to help out and are they taking leave over the summer to help out? I know a lot of people are trying to help with long term solutions but right now it's the looming summer holidays which are giving you the fear - how are you planning those? Is there anyone else (partner/ex, family, friend) who can look after your older child, even for just a couple of hours at a time, to supplement the respite and allow you to do things with your older two?

I do agree that 2 hours respite takes the piss - I mean that's so little time surely you spend as much time preparing him for it and winding him down afterwards as you actually get free time. If you have any fight left in you, that's what I'd focus on - demanding more hours, ideally a full day a week, so that you can properly relax and maybe even schedule in some one to one time with your older kids. It seems like so so little to ask, makes my blood boil that it would be easier (hah) for you to pursue residential than it is to get this basic, basic help that would allow you to carry on looking after your son in your own home without losing your mind. I'm so sorry it's like this for you xx

I don't have much practical suggestions op but just to say it sounds so , so hard and relentless. I wish you had more support but I can well imagine you don't. Do you have a oh?
Maybe you don't want suggestions but I can see ppl have made some possible ones throughout this thread. You obviously love your dc so much and you are an amazing parent for dealing with this day in and day out so far. And even though respite might be the best solution I can totally understand how this is a very, very difficult decision to make as this is your child who you love so much but at the end of the day you are a human who also needs to rest , sleep and go outside sometimes. I don't know what the answer is but I guess you might have to question can you sustain this going forward?
I hope I haven't been patronising as it's too easy for others to say things etc when we aren't living in your situation. I wish there was more help available in homes like yours.

@Defeatedbylife

So much helpful advice and kind words, reality is ive knocked on all the doors and bottom line is unless i request residential im pretty much on my own.i just couldnt.i wish there were centres open to help with cares of special needs kids that you could pay for at reasonable costs which parents could use and be supported at.im existing not living,the only thing i look forward to is being asleep.

They DO have respite care, they are lying bastards. But they might have to buy the place from a specialist agency and it will cost them money so they don’t like it.

Have they told you yet that you can’t have respite with foster carers because the FC can apply to adopt your child after two years ? That’s another lie / misrepresentation of the facts and you can ignore that one too.

They won’t give you any help until you tell then that your child needs to go into care because you can’t cope anymore. I know you don’t want to say it but it’s the only way.

Have you thought about residential school during the week and your child coming home every weekend ? Why do you think your child would be unhappy there ?

What about shared care with specialist foster carers ?

No one is saying these are easy options BTW. It’s an agonising decision . But it might be better for you all INCLUDING your DS.

And yes I do know what I’m talking about. Yes it’s hard. Yes you will feel grief stricken , guilty and a total failure.

But I bet you feel that now.

You could start with a couple of hours respite in a residential facility to see how it goes and build up slowly? The staff are trained to care and provide for children like your son.He may not react in the way you expect. It’s worth giving it a go.

Hello,

I just wanted to say sorry you are in this difficult place. It sounds like you need support from outside the situation. Can you get a counsellor to help you find solutions and give you some support and perspective. Relentless caring can be very depleting and no one should have to bear all the responsibility. There may be professional help for your child that you can access. There might be people locally who would welcome an opportunity to help you a few hours a week. I am sympathetic as I have been caring for my aged mum in lockdown and got exhausted, anxious and depressed. I have a counsellor now and have got my brother to take on the role and bring in carers who are paid professionals if necessary. Different situation, but similar feelings. Not all households are like the adverts or the Waltons, far from it I believe !! Really good luck to you and hope your depression lifts and you get some help.

I provide support in a school to children who face obstacles. Sometimes these are the siblings of disabled children.
Basically my job is to give them an opportunity that puts them on a level playing field with their wealthier/more privileged peers.

So I think that extra support for the siblings could happen?

Siblings of disabled children are under privileged and not wealthy? @NoTruckWithFrontedAdverbials that’s quite a leap!

Apologies, hopefully you see what I was trying to say?
It was ambiguous I see now

MobyDick :
"I rang ss and insisted they were going into care, and I damn well meant it (( well I didnt but their SW didnt know that)) 4 nights a month overnight respite and 8 hours a week fell from the sky."

I too think you need to threaten. 2 hours of respite is pathetic. I bet they can give you more, in fact I know so. Both my parents are retired social workers.

OP, I can’t imagine that situation. But support network from family and people in the same situation might be very valuable, I’d say essential.

I’ve had a horrible experience that tore apart my life (violent stranger sexual assault). I only got through with help from DH, counsellor, and people I can talk too. I pray that you can get the support you deserve with your DS.