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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:
Snugglemonkey · 30/04/2023 20:09

x2boys · 30/04/2023 18:17

There isn't .

Care in the community was a wonderful premise. Getting people out of institutions and into family environments was well meaning. However it only works when help is in place for families to manage. Respite care, day care centres etc. I am so sorry that these are not widely available as no one should have to struggle like this.

I am so sorry op. I hope that things improve about with time and that government wakes up and provides proper funding for care.

oprahfan · 30/04/2023 20:11

@Pegsandsunshine
was going to say, there are day services available, rather than residential. Where I work, we provide both.
Going to school. Going to study. Going to play. Going for massages, therapies and workshops. You wouldn’t be giving your son up at all. But being given the time and space to be human again, is so vital.

x2boys · 30/04/2023 20:23

This reply has been deleted

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

Well exactly most of us don't have a choice .

oprahfan · 30/04/2023 20:24

@Pegsandsunshine have a look at familyandchildcaretrust.org too. It is written in law that help and care have to be provided. Accessing is not always easy. Wish it was! Do look up Camphill England or Scotland too.

x2boys · 30/04/2023 20:28

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.

Indeed mostly us do it out of love even on my worse days ,I look at my boy and think how could I abandon him,as bloody hard work but no one will love him like I do

EilonwyWithRedGoldHair · 30/04/2023 20:29

I'm sorry, it's shit. Have no real words of advice, but I'm sat here feeling similarly about my life.

Crikeyalmighty · 30/04/2023 20:33

@Pegsandsunshine I think you should show your partner these posts. It's incredibly unfair on you personally if he doesn't want SS involved because of stigma and I'm sure he would rather get some proper assistance than end up with a divorce on his hands. SS have a team dealing with disability etc- it's totally different to implying you are unfit parents. SS is the starting point of being able to access anything in so many cases. I also would see if there's a coordinator at the special school who can help you get the ball rolling or even your GP practice. I can't imagine what you go through daily but I think you owe it to yourself firstly but also your son to explore all options even if it involves SS

Passmethewine23 · 30/04/2023 20:35

Gymmum82 · 30/04/2023 18:33

Do you have respite care available? There is a residential care home for children with severe autism and disabilities just one street away from my house. So those saying they don’t exist....they do. However I do not know the costs/how to get a place or anything like that. Maybe something exists near you? It sounds utterly exhausting and I’m not surprised you’re struggling

My partner also works for one and it's a charity!

Crikeyalmighty · 30/04/2023 20:37

Can I also say thank you to @oprahfan - it can be so useful when someone who genuinely knows the score out there adds their ten pennorth. I am really rooting for you @Pegsandsunshine and hope you all can get some much needed help and joy back in life.

SeanDanielorBalonz · 30/04/2023 20:37

Just a handhold here. Life with kids if hard enough but what you are experiencing is another level. I often think of parents like you and everything you go through, the huge sacrifices you have made and continue to make. I am really sorry that it's so difficult and that life asks so much of you. I really hope you get some respite.

cloverleafy · 30/04/2023 20:39

It is a horrendous way to live, no argument.

Please look again at the social care options. The disabled children team will be completely separate from the safeguarding teams. It's not a lot, but if you're persistent there is some support available via this route. It might be specialist playschemes in school holidays, shared care ( day or overnight respite with a Foster carer) or Direct Payments (giving you a budget to employ carers), or a mix of those and/or something else. It's not a miracle cure, but it might help just a bit.

You should also be able to access a carer's assessment for you, though you'll have to push in most LA.

Have you found any other parents locally in similar situations? They are a mine of information. You also NEED people who get it, that you can talk to on the bad days.

FarmGirl78 · 30/04/2023 20:42

x2boys · 30/04/2023 18:19

Would you Be so blase,about putting your child up.for adoption

I know someone who made the heartbreaking decision to do this. So many people were horrified by her decision, but her Son doesn't have the capacity to really understand, he's got great foster parents who were well up for the challenge that she felt she couldn't step up to. He's now cared for by these 2 wonderful people who treat him like their own, rather than his own Mum who was just angry, struggling, tearful and resentful all the time. He is happy and giggly and totally a different child. She's happily married to man she met since, and his Sister has a much more peaceful home life and time commitments that she wasn't able to have before. I'm not for a minute saying I think the OP should do this, but for some families it does work out better for everyone.

FarmGirl78 · 30/04/2023 20:44

@Pegsandsunshine You need to push SS for Respite care. Sometimes you get a better result if they realise that the alternative to them providing this is that you'd totally throw the towel in and then they'd be expected to do EVERYTHING.

x2boys · 30/04/2023 20:50

cloverleafy · 30/04/2023 20:39

It is a horrendous way to live, no argument.

Please look again at the social care options. The disabled children team will be completely separate from the safeguarding teams. It's not a lot, but if you're persistent there is some support available via this route. It might be specialist playschemes in school holidays, shared care ( day or overnight respite with a Foster carer) or Direct Payments (giving you a budget to employ carers), or a mix of those and/or something else. It's not a miracle cure, but it might help just a bit.

You should also be able to access a carer's assessment for you, though you'll have to push in most LA.

Have you found any other parents locally in similar situations? They are a mine of information. You also NEED people who get it, that you can talk to on the bad days.

Actually yes this had helped me more than anything on offers
I now have a fabulous group of friends who have children who have similar challenges to my child ,they get it and im very lucky to have them.

x2boys · 30/04/2023 20:55

FarmGirl78 · 30/04/2023 20:42

I know someone who made the heartbreaking decision to do this. So many people were horrified by her decision, but her Son doesn't have the capacity to really understand, he's got great foster parents who were well up for the challenge that she felt she couldn't step up to. He's now cared for by these 2 wonderful people who treat him like their own, rather than his own Mum who was just angry, struggling, tearful and resentful all the time. He is happy and giggly and totally a different child. She's happily married to man she met since, and his Sister has a much more peaceful home life and time commitments that she wasn't able to have before. I'm not for a minute saying I think the OP should do this, but for some families it does work out better for everyone.

But it's not you is it?
I'm actually the parent of a child with severe autism and learning disabilities he's nearly 13 but cognitively around two or three,unless YOU are in that position you have no idea .

InceyWinceySpidy · 30/04/2023 20:55

Pegsandsunshine · 30/04/2023 18:24

DS is at school now (we were lucky to be offered a special school), but we also have a younger DD, who may also be on a spectrum (insert clown face emoji here) so there is that too. I had to go part time already, and will remain PT if I am even lucky enough to remain in employment by the time DD goes to school.

Our main issue is though that I am the CHOSEN ONE. He will not let anyone else comfort him, so while my partner is trying his best, he just rejects him.

Can you not get a carer? Excuse my ignorance because I don't know how you qualify for an additional carer on the NHS, but who/which department could deal with this? Via DLA? Or EHCP? Anything?

x2boys · 30/04/2023 20:59

InceyWinceySpidy · 30/04/2023 20:55

Can you not get a carer? Excuse my ignorance because I don't know how you qualify for an additional carer on the NHS, but who/which department could deal with this? Via DLA? Or EHCP? Anything?

Via social services,you, can ask for a carer ,s assessment but even in the most extreme cases support is limited.

Fundays12 · 30/04/2023 21:00

Hi OP I am a mum of an autistic child..he is verbal but omg he is such hard work. He also has ADHD too. His meltdowns are phenomenal and abusive, he needs routine, structure, can't cope with change, has a lot of sensory processing difficulties. I reached breaking point as we had no support either plus 2 other kids to care for. You need to get your D's school to apply for a disability social worker and request respite. You need to be direct.I literally had to tell them they help us or we hand over custody of him to social work and sign away our parental rights. It's a horrible thing to say but it made social work realise we needed help and either way they were going to have to help us. We got respite paid for by the disability team. It's not much only 3 hours a week and a few days in the summer holidays but it makes a difference. He goes of with his PA and we all breathe a sigh of relief.

ThreeLocusts · 30/04/2023 21:15

OP I'm so so sorry. My half brother is autistic and the toddler years were some of the hardest. But he is in his 30s now and things are a lot better.

The only advice I have is to try social services again. Your situation has clearly evolved and they may have something to offer that didn't come up before.

I wish you all the best.🌺

Nellynoo182 · 30/04/2023 21:45

Have you tried occupational therapy OP? OT’s can work amazingly with autistic people. You can self refer through the council for an OT assessment (or at least you can in my locality). Definitely have a look into it and best of luck for the future ❤️

Mariposista · 30/04/2023 22:11

So so sorry OP. You have been dealt a really shit hand in the card game of life. No advice, only sympathy.

Pegsandsunshine · 01/05/2023 08:06

FarmGirl78 · 30/04/2023 20:42

I know someone who made the heartbreaking decision to do this. So many people were horrified by her decision, but her Son doesn't have the capacity to really understand, he's got great foster parents who were well up for the challenge that she felt she couldn't step up to. He's now cared for by these 2 wonderful people who treat him like their own, rather than his own Mum who was just angry, struggling, tearful and resentful all the time. He is happy and giggly and totally a different child. She's happily married to man she met since, and his Sister has a much more peaceful home life and time commitments that she wasn't able to have before. I'm not for a minute saying I think the OP should do this, but for some families it does work out better for everyone.

Meeting another man, having an amazing life, while someone else takes away all the problems, a bloody dream, right?
But life ain't a fairy tale. And as I said, firstly giving my son, who is an amazing loving little boy, not a bad bone in his body would never cross my mind. There is no one in the world who would take better care of him. It'sjust sad how few opportunities there are for us to not go insane from stress and fatigue.

OP posts:
neverbeenskiing · 01/05/2023 08:20

LeavesOnTrees · 30/04/2023 18:27

Oh gosh I think my post about putting him up for adoption has been very misunderstood.
I wasn't saying to do it, but asking if she would as it IS an option.

She does have a choice. She is choosing to keep looking after him as she loves him, but she's not coping. By saying to yourself I'm choosing this it's then a case of accepting the situation and making improvements within what is possible.

How do you think this works? You can't just call Children's Services and say "I don't want to look after my child anymore, please take them into care". Believe me, I've worked with parents who have done exactly that and all have been told in no uncertain terms that it's not going to happen. I've even known parents try to drop their child off at the nearest Children's Services office or A&E, thinking this will force the authorities hand. All that happens is that the Police or a Duty Social Worker brings them home and tells them they need to take responsibility for their child. As PP said, people aren't queuing up to adopt an older child with complex needs and there is a massive shortage of Foster carers in most areas of the UK. The option to 're-home' your disabled child like an unwanted pet is not something that exists.

Lioney · 01/05/2023 08:38

lauraisa · 30/04/2023 18:10

I can't help but think there must be a special type of home he could to live in and you could visit at weekends. I don't mean to sound heartless at all.. but I can't help but think this is an impossible situation for your family. Do you have a case worker or social worker? What do others do in these types of situations?

There isn't in the UK.
Possibly residential school when he's of school age but it is incredibly difficult to get a place.

I have 3 Autistic children and I just cope day to day.

x2boys · 01/05/2023 10:21

OutsideLookingOut · 30/04/2023 19:51

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.

Putting a disabled child into foster care or having to make a decision about a residential school.would be incredibly hard decision for any parent ,but I have always seen it suggested by posters o these of threads in a very blase,manner and frankly I find it insulting that posters suggest it with no idea of how it might work or how hard it would be for the parents or the child
parents of children with disabilities are not some special type of parent who automatically knows how to deal.with difficult situation,see are just normal ,and sometimes we ,or at least me gets it wrong
but ultimately most of love our kids unconditionally do carry on as what else can we do?