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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:
1111A · 30/04/2023 17:59

My youngest brother was exactly like this, and my mum had to seek help from social services and services at his school for rest bite care.
his school also offered one night a month where they stay over, the thing is you have to push for these services and insist on the gp helping you. I’m so sorry you’re going through this I watched this for years with my own mum and tried my best to support her before my brother went into assisted living at 15. I really hope you can get the support you need x

IKnowWhatTheAnswerIs · 30/04/2023 17:59

Just offering a hand hold and sending you a hug. I have so much admiration for people who have your strength. I’m sorry it’s so hard. Best wishes for your family x

LeavesOnTrees · 30/04/2023 18:04

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Babsexxx · 30/04/2023 18:10

My child is the same but he’s almost 5 and since he turned 4 I’ve noticed somewhat of a improvement! He is going through ehcp he’s still nowhere near what he should be but constant monitoring is no longer a thing I mean there where days I couldn’t even go for a piss was extremely hard! It does get easier I felt like this a hell of a lot his behaviour totally peaked from 2-3! Was hell! Hold on! It gets easier xx

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?

Choconut · 30/04/2023 18:13

That sounds so, so difficult OP, I don't suppose there's any possibility of a residential school when he gets to school age is there? I'm not sure exactly how old he is.

On a different note can you try to find another job that you can enjoy at least a little? You desperately, desperately need something that is positive and supportive to help you recharge a little. To go from miserable job to challenging ds and back again must be soul destroying.

GoodVibesHere · 30/04/2023 18:14

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F@ck!! Why would you this?!

Choconut · 30/04/2023 18:14

Oh and where does ds go while you work? Could you work one day less a week and him still go there so you just get one day to just be you?

mrsharrisgoestoparis · 30/04/2023 18:15

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cocksstrideintheevening · 30/04/2023 18:16

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Seriously?

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.

Hereforarant90 · 30/04/2023 18:17

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Jesus fucking christ!!

OP why can't you and your partner do more separately while the other is with your son?

And no guys, you can't just sack your kids off, even the really difficult ones.

mrsharrisgoestoparis · 30/04/2023 18:17

I am really thinking of you, you sound an amazing dedicated mother and he is lucky to have you.

x2boys · 30/04/2023 18:17

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 .

Hereforarant90 · 30/04/2023 18:18

Also, I get it, my kid is autistic and non verbal too although we don't seem to have the same difficulties. He has changed so much though as he's gotten older.

x2boys · 30/04/2023 18:19

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

JMSA · 30/04/2023 18:20

I'm so sorry, OP. This is just so relentlessly fucking difficult and thankless Flowers

Hereforarant90 · 30/04/2023 18:20

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AssertiveGertrude · 30/04/2023 18:21

I completely empathise. It’s not always a superpower. I don’t want to out myself but I genuinely think it’s a cruel world to live in

mrsbitaly · 30/04/2023 18:22

Can you not get respite? My MIL cares for a severely autistic child that has the same characteristics when he arrived at 4. He's 13 now and can communicate through some Makaton and lots of visual aid cardboard stickers - sorry I don't know what they are called. But has images of everyday things like drink, toilet, ect. It's taken alot of hard work and constant repetition. It won't work for everyone but he can now say a few words and understands most questions. He still really focuses on certain things like balls and makes screeching noises and can get frustrated really quick and lash out but he's improved alot.

I don't know what it's like to live with but spending time with them on holidays ect it looks absolutely hard and I can imagine the constant noise is draining. I really hope you get the support you truly deserve
Sending you a big hug 🫂

Pegsandsunshine · 30/04/2023 18:24

Choconut · 30/04/2023 18:14

Oh and where does ds go while you work? Could you work one day less a week and him still go there so you just get one day to just be you?

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.

OP posts:
Whisper23 · 30/04/2023 18:24

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What the fu**?? This is a much-loved child not a dog.

Chocolatesandroses · 30/04/2023 18:25

Hand hold , I just want to say op you’re not alone at all. I have two children with autism and I know it’s incredibly hard work . Sorry I don’t have any advice at all xx

Comedycook · 30/04/2023 18:26

I'm so sorry op...life can be really fucking unfair 💐

cansu · 30/04/2023 18:26

No you can't just put up a child for adoption. It is in any case hardly likely to lead to a good outcome as there certainly will not be queues of people desperate to adopt a child with so many problems and a severe disability. I think the prevailing view on here that there must be some sort of lovely home you can leave your child in and then visit every now and then. There is not.

OP the best you can do is get as much respite as you can so that you can get a break. I would also try to get your ds into nursery ideally a SN one linked to a special school if that exists near you.