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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To hate my life

139 replies

Pegsandsunshine · 30/04/2023 17:55

That really, as I have no one irl to vent about.
I think of myself 15 years back, finishing uni, being full of hope and thinking what life would bring.
What it brought is an autistic child whom I love dearly, but if I had a time machine I would f* all the way back and sterilise myself. My kid is amazing in many ways, but life is so brutally hard sometimes.
He's non verbal, stimming loudly most of the day. The constant level of noise, wailing and shrieking (very often done in my face) actually started making me feel suicidal, the feeling of helplessness I have no clue how to help him. He was ill over two weeks of Easter. No clue what it was, as he does not speak not point, nor understands questions. So a guessing game, what could it be? Sore throat? An infection? Belly ache? Tooth ache? 4 weeks later we are non the wiser.

The relationship with my partner crumbled. We are together just about, but the levels of stress are killing whatever affection is still left between us. When you have a kid you make all sorts of plans what you will do. Well, we are mostly stuck in our living room watching selected bits of Cocomelon or whatever obsessively favourite song of the day is. We don't have hobbies anymore, we do';t go out (except separately for a few hours once a month). DS's growing out of the buggy which is the only way we can take him out anywhere and when he grows out, my last bits of being able to leave to shops will be gone (he won't walk, does not understand danger awareness).
Neighbours stopped talking to us months ago, as I think again despite us doing whatever we can, the noise must be horrible. I feel for them and am ashamed we make their lives difficult. We have no savings as we spent everything on bits of therapies that NHS could not offer (we got 3 hours of speech and language when he was 3).
We don't have friends as we can't really go anywhere. I am lying- tI have online friends on various forums and websites, where I pretend to be someone else living a different life. I can't go on social media to chat to (former) friends as I am bound to see what they are up to, which makes me jealous and depressed as people can go on holiday or even go out to a park and dont even know how lucky they are, while we try to survive an other meltdown started by we don't know what. His comfort things changes, at the moment it's to dig his nails into my body and pull my hair. You need eyes on him every breathing second as he will eat things from a bin/fall/grab something that becomes dangerous in his hands/lick the pavement, you name it.

What gets to me is that there is zero support of any kind, seeing anyone takes months (we needed help with sleep, had to wait 6 months of sleep deprivation to see a ped in hospital), you get a leaflet if you're lucky and are sent on your way.

I am just about managing working a job I hate, but it's my only way to actually talk to other adults and not go crazy, and not spend another hour listening to sounds that I dont know what they mean.

Just that really. I love my child, I really do, but seeing him suffer every day is horrific, seeing us become sour, bitter people who ghate life is sad, and while I know there is worse, really that does not make me feel any better. I know we are not the only family cooped up in their house/flat, families like ours, you either don't see or you see them frantically trying to peel off their child during a meltdown from a supermarket floor and pity us. I hate autism. Whenever I see people saying it's a superpower I want to scream.

OP posts:
x2boys · 30/04/2023 19:33

Frankbutchersfangs · 30/04/2023 19:29

Actually my parents used to part-time foster care for parents of special needs kids to give them a break. There are actually people who love caring for special needs kids, my parents being them.

Yes there is that option it's mainly for younger children
The thing is it's a long arduous process ,the cilld and family have to have an assessment,than it has to go to panel and respite agreed and then there is a waiting list.

ThankYouMama · 30/04/2023 19:34

💐 🤗

Sorry to hear what you are going through, I'm sure you would be entitled to some form of respite.

I haven't had the chance to read through your whole thread but the government should be doing A LOT more to help you cope with your son and his everyday struggles.

ThankYouMama · 30/04/2023 19:36

Just read the post where someone suggested to "put him up for adoption"

Mumsnet can be such a cruel dark place sometimes ☹️ what ever happened to "if you haven't got nothing nice to say, don't say anything at all"?

Nuevabegin · 30/04/2023 19:37

Op I’m not going to be any help but you sound absolutely amazing . I can’t even
imagine how tough it must be for you all. The fact that you have a job and are able to function is already amazing . It so so shocking how little support there is , how on earth are ppl meant to cope at all in these situations.

I don’t have anything useful to say but re the sleep , not being able sleep is one of the things that if you can get any help (obviously you’ve prob tried everything anyway ) I would push for (nowhere on the same scale as you but one of my dcs didn’t sleep for 4 years and I almost lost my mind , he eventually did himself but I wish I’d asked drs for more help , he would wake constantly screaming every 45 mins for years ) but I didn’t think there was anything to be done. Have you been given melatonin for your dc?if not I would ask and see if that helps re sleep as you will be able to deal with thing’s slightly better with sleep. Can you wear noise cancelling earphone, I hope that doesn’t sound awful but just to dull the constant noise ?
I’m not in the uk so I have no idea re support but I think in lots of places parents have to jump through hoops to get anywhere.

It’s absolutely normal that you feel sad , you obviously love your dc but it sounds so so difficult. Not at all the same situation whatsoever but we have 3 dcs and no support so the only breaks we get is to swap over. When it gets unbearable can you give each other time to get out , clear the head, even book a cheap Airbnb for a night and just go somewhere and detach . I’m sorry if what I’m saying is too simplistic and it isn’t going to solve your problems but you will need strength to deal with the years ahead and to try and even research you can access any support if there is anything at all available.

Axolotlquestions · 30/04/2023 19:39

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

People seem to go around thinking there are magical people out there with a severely autistic shaped hole in their lives, waiting patiently to adopt disabled children. This is frankly delusional.

The 'autism is a superpower' messaging is pushed by people whose autism is mild enough to function in the world enough to become successful. It simply doesn't represent the severe end of the spectrum.

OP, I hope you can find a means of getting some respite. It does sound brutal and thankless. I speak as parent to four autistic children, and theirs is relatively mild. Nevertheless, it's not much fun a lot of the time.

Peppapigboresme · 30/04/2023 19:40

This reply has been withdrawn

The OP has privacy concerns about this thread, so we've agreed to take it down.

Coffeeandbourbons · 30/04/2023 19:42

nomoredrivingytu · 30/04/2023 18:32

I'm just so sorry for your situation.

Flowers

Me too, there but for the grace of God.

It’s horrific how parents in your situation are left to suffer

💐

Peppapigboresme · 30/04/2023 19:42

This reply has been withdrawn

The OP has privacy concerns about this thread, so we've agreed to take it down.

Spottycarousel · 30/04/2023 19:43

I completely understand. My son is now older and in a placement but he was exactly like yours and I was a single mum with health issues. I was suicidal for much of the time. My son wouldn't sleep and he would scream and bang the bedroom wall and keep running around shrieking and throwing stuff. It was absolutely bearable and my heart goes out to you full sdo you. Luckily I got help from social services because I help from social services because I couldn't cope. I know it's very difficult to get help now but I really hope there's something for you. Hang in there because things can get better.

Pegsandsunshine · 30/04/2023 19:45

I would not even know what to start.
My partner would not be up for a SS referral, I suppose it's the stigma but also, not sure how they could actually help. We tried to get into a LA support programme, only to get conflicting messages how to apply (even people working there didnt seem to know) only to be fobed off in the end. Early help were in touch 2 years ago but then we were full of hope and didnt need them. Now I just feel crushed.

I would not be able to give my son up. I love him and I genuinely dont think there is a better option for him out there. It's out of the question. We have an incredibly strong connection and he would not cope well without me, and me without him.

Being in a special school, he does get a lot of input (SALT, attention autism, some physio, learning routines), but it's kind of like, you put out one fire and another one erupts. He used to use toilet independently. Now it stopped. He used to ask for things It stopped. He manages to do other things, but then wakes up at 2 am and screams for an hour. There is no constant and we dont udnerstadn what is going on.

Thank you for the lovely stories where kids managed to make a large progress over time, wit does give hope to read them.

OP posts:
Peppapigboresme · 30/04/2023 19:46

This reply has been withdrawn

The OP has privacy concerns about this thread, so we've agreed to take it down.

Strawbag · 30/04/2023 19:47

You sound like an amazing person op. My ds is high functioning and it's still a struggle. I don't know where you and other parents find the strength to cope.

Just a suggestion, have you heard of Special Yoga? They do yoga classes for children with additional needs. I trained as a practitioner with them years ago and they are fantastic with severely disabled children. I know that finding activities to do with your little one can be a struggle so this might offer some distraction for you both.

https://www.specialyoga.co.uk/

specialyoga

https://www.specialyoga.co.uk

Hereforarant90 · 30/04/2023 19:49

God the replies on this thread are irritating. ‘You’re amazing! I don’t know how you do it’ is a really annoying thing to say to a parent of a disabled child.

Yeah. People mean well but we are literally just doing our best for our children because we love them. Just like any other parent.

Peppapigboresme · 30/04/2023 19:50

This reply has been withdrawn

The OP has privacy concerns about this thread, so we've agreed to take it down.

nocturnalstar · 30/04/2023 19:50

You're not alone, this is my life too! We have a mclaren major elite special pushchair that helps with getting out and about and also I met a few mum's at groups with similar children who get it, that's really helped too. Do school do some coffee mornings etc? It's so hard x

OutsideLookingOut · 30/04/2023 19:51

ThankYouMama · 30/04/2023 19:36

Just read the post where someone suggested to "put him up for adoption"

Mumsnet can be such a cruel dark place sometimes ☹️ what ever happened to "if you haven't got nothing nice to say, don't say anything at all"?

And how do you think the people who did such a thing feel? There are parents who can’t cope and for the sake of their child use foster carers/adoption. This attitude makes the stigma around it so much worse. These are people who loved their children too. It was not an easy choice and not one most people will ever have to think about. Some compassion both ways would be nice.

x2boys · 30/04/2023 19:52

This reply has been deleted

The OP has privacy concerns about this thread, so we've agreed to take it down.

I hate welcome to sodding Holland!

Rumplestrumpet · 30/04/2023 19:53

I'm sorry OP it sounds so incredibly hard. Don't feel guilty for wishing you could wind back time - there's nothing wrong with that.

All I can say is that I think of people in your situation often and do try to raise awareness of the need for better support. I've also raised it with councillors and MP candidates when they come around canvassing- it would be great if everyone on this thread could do the same and increase pressure on government to do more. Far more important than the tiny impact of immigrants on boats or culture wars.

Good luck

LeavesOnTrees · 30/04/2023 19:58

IhearyouClemFandango · 30/04/2023 18:41

I read the post about adoption as being a thought process suggestion...start with the most radical thing you can think of and work backwards to find out where your comfort zone/true want is.

My post has now been deleted and I'm very sorry for any offence caused.

This is what I was trying to articulate and also the post who said it's about gaining control over a situation that feels beyond you.

Spottycarousel · 30/04/2023 20:01

Pegsandsunshine · 30/04/2023 19:45

I would not even know what to start.
My partner would not be up for a SS referral, I suppose it's the stigma but also, not sure how they could actually help. We tried to get into a LA support programme, only to get conflicting messages how to apply (even people working there didnt seem to know) only to be fobed off in the end. Early help were in touch 2 years ago but then we were full of hope and didnt need them. Now I just feel crushed.

I would not be able to give my son up. I love him and I genuinely dont think there is a better option for him out there. It's out of the question. We have an incredibly strong connection and he would not cope well without me, and me without him.

Being in a special school, he does get a lot of input (SALT, attention autism, some physio, learning routines), but it's kind of like, you put out one fire and another one erupts. He used to use toilet independently. Now it stopped. He used to ask for things It stopped. He manages to do other things, but then wakes up at 2 am and screams for an hour. There is no constant and we dont udnerstadn what is going on.

Thank you for the lovely stories where kids managed to make a large progress over time, wit does give hope to read them.

There's no stigma with asking SS for support and respite for a severely disabled child. Many families rely on it and can't cope without it. There's no shame in that. You can ask for a carers assessment and take it from there.

I didn't give my child up. He's now in an adult residential placement. But caring for him destroyed my health and I will probably never be able to work.

I understand how hard it is and the wishing to turn back time but also loving your child so much.

Nuevabegin · 30/04/2023 20:03

@Peppapigboresme genuinely posted in good faith and I have actually very personal experience of this situation. I also said what I said was too simplistic and probably not helpful. Take care op and best of luck and sorry if what I said was shit.

DanceMonkey19 · 30/04/2023 20:04

No advice sadly OP but here in solidarity. This half term is a shit show too in terms of disrupted weeks due to bank holidays/insets/voting and rushing ever closer to 6 whole weeks of not even school hours respite. I'm absolutely dreading it, as are most parents I know in the same situation.

I would say don't discount the social services option, in your situation it is the children's disability team that support, it is not the same as safeguarding, IE no-one is implying you're an unfit parent, it's meant to be about assessing your child's needs and your needs as parent carers too. As others have pointed out, direct payments are not a magic bullet - even when you've been awarded it is difficult to find carers, however it may be a contribution to paying for some care, even if it is in the home while you are present, allowing you to go for a shower or drink a cup of tea in the next room.

Tis shit, no two ways about it.

Pegsandsunshine · 30/04/2023 20:08

I know people saying "Well done you" don't mean harm, what else can you say really. 7 years ago I would not know what to say either, there is just nothing anyone can say nor do to help us. My hope is winning a blooming lottery, or I dont know, don't see many alternatives that would lead to a happier otcome for us all.

OP posts:
oprahfan · 30/04/2023 20:08

@Pegsandsunshine
Many, many, many children and young people DO progress in the right environment.
I’m incredibly proud of my colleagues and the work and genuine care they put in day after day. Yes, some days are very tough, but we take things minute by minute, moment by moment.

Fact is, you do need a break, your partner needs a break, but I cannot for the life of me understand why you wouldn’t get SS involved. Surely they would be able to get the ball rolling re other services?
The fact is, there is funding available, the councils throughout the U.K. have to make it available. Unfortunately, you do have to dig your heels in, when dealing with some local authorities, it’s outrageous, but not impossible.
We have some youngsters whose parents visit every few days, because they live close by.
We have other parents who live hundreds of miles away.

You need to get things moving in a different direction for all your sakes.
one parent said to me, that the care we take of her daughter was like winning the lottery, but better.
You can have your eyes opened, and in a good way OP.
It’s very annoying when those who have no idea when dealing with the situations that you’re dealing with think your child could have some amazing gift. Not helpful.
It may seem overwhelming not knowing where to start.
You’re a few steps away from a different life, for yourself, your partner and that of your son.
I wish you the very best. Hang in there.

NotAnotherBathBomb · 30/04/2023 20:09

Gtsr443 · 30/04/2023 18:16

I hear you OP.
I have an autistic 16 Yr old. I've been punched in the head this week. Called terrible names. The relentless unkindness is unbearable.

People and their "superpower" crap can fuck right off.

Agree. Or the 'my autistic child is easier than my NT child!' Good for you, but the reality is quite the opposite for many with autistic children.

OP, I am so sorry.

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