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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:
Hereforarant90 · 01/05/2023 10:28

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.

Very well articulated and relatable.

Treaclehair · 01/05/2023 12:56

Why oh why do posters come on threads like this insisting there must be respite / foster care / adoption available, even when there are a plethora of posts from parents with disabled children saying over and over THERE IS NOT Hmm

Even if your parents did it back in the 1990s, even if your neighbours best mates sister did it , even if you know someone from work who did.

Coffeeandbourbons · 01/05/2023 13:00

@Treaclehair they’re trying to be kind using second hand or presumed information ☹️

Goonergirl14 · 01/05/2023 13:07

I could have written this post myself though my DS is verbal but it is emotionally/mentally/physically draining. He moans about everything, everything upsets him and even though I love him so much I do at times resent others who can go out and about without a care in the world. I hope things get better for you and easier.

MrsMikeDrop · 01/05/2023 13:11

Also sending you a handhold. Can you find out if there is either someone who can come into your home to give you and your partner a break or if you can take your child somewhere where they can care for them. You have to have a break, once a month is not enough. Do whatever ot takes to get some relief. I don't know how anyone could manage in your situation. Sorry I can't help more, sending you strength Flowers

lollipoprainbow · 01/05/2023 14:06

Same for me my dd is autistic and verbal but boy is she hard work !! Every day we have tears, meltdowns etc. it's exhausting life is very hard so envious of those with NT kids.

LaMaG · 01/05/2023 14:27

God love you OP xx I have 2 very high functioning ND boys and yet I feel like driving off a cliff sometimes from the stress of it all, can only imagine that x 100 for you. I have rang a charity helpline in tears a few times and basically ranted how much DS1 has ruined my life etc etc, things I feel are true in the moment but could never share with anyone in my life. It got me through some bad days.

x2boys · 01/05/2023 14:29

Coffeeandbourbons · 01/05/2023 13:00

@Treaclehair they’re trying to be kind using second hand or presumed information ☹️

I'm sure try are but it's not helpful tbh.

x2boys · 01/05/2023 14:30

MrsMikeDrop · 01/05/2023 13:11

Also sending you a handhold. Can you find out if there is either someone who can come into your home to give you and your partner a break or if you can take your child somewhere where they can care for them. You have to have a break, once a month is not enough. Do whatever ot takes to get some relief. I don't know how anyone could manage in your situation. Sorry I can't help more, sending you strength Flowers

It's not but there is very little respite available to anyone.

caringcarer · 01/05/2023 15:58

How old is your DC OP? When he goes to school you will have a few hours for yourself. It must be so hard for you.

Pegsandsunshine · 01/05/2023 17:20

caringcarer · 01/05/2023 15:58

How old is your DC OP? When he goes to school you will have a few hours for yourself. It must be so hard for you.

He is in school, but I work so I dont get much time to myself at all, plus I am a TA so spend the entore half-terms and holidays together with the kids. There are no clubs of holiday stuff for ND kids at this stage of autism, as he really needs 1:1 or something similar and people with experience.

OP posts:
Crikeyalmighty · 01/05/2023 17:26

I think one of the problems too is we could have resources galore available but at the moment very few people of quality ,capable, qualified, willing and able to staff them and they deserve the best.
That I think is probably the harsh reality. We have totally undervalued skilled and often rewarding work caring for adults, teens and children who need extra care.

x2boys · 01/05/2023 17:33

Pegsandsunshine · 01/05/2023 17:20

He is in school, but I work so I dont get much time to myself at all, plus I am a TA so spend the entore half-terms and holidays together with the kids. There are no clubs of holiday stuff for ND kids at this stage of autism, as he really needs 1:1 or something similar and people with experience.

Yes it's really difficult my boy is a and albeit older ,all- autism clubs are geared for higher functioning children ,we do get a day a week in 'school,holidays at a special needs play scheme and he's just started every other Saturday at the same place 10-3 but it has, to.be assessed for and like everything can take a while to.access

InceyWinceySpidy · 01/05/2023 17:42

Pegsandsunshine · 01/05/2023 17:20

He is in school, but I work so I dont get much time to myself at all, plus I am a TA so spend the entore half-terms and holidays together with the kids. There are no clubs of holiday stuff for ND kids at this stage of autism, as he really needs 1:1 or something similar and people with experience.

What about the local authority "short breaks" thing where you get a budget each year to give carers and Sen children a break. You can get an assistant out of your budget.

We only qualify for the lowest amount, but it goes up to thousands per child per year.

Have you applied to family fund as well OP?

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