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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:
OhcantthInkofaname · 30/04/2023 18:53

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MortalWomb4t · 30/04/2023 18:53

Despite being told there is no respite I've been told I could maybe get direct payments so look in to these. It could mean you can pay someone independently, but even then I imagine there's a considerable wait.

Hereforarant90 · 30/04/2023 18:57

Pegsandsunshine · 30/04/2023 18:48

Thank you everyone for kind words.
I have better days, today is not one of them. On paper it looks bleak, it isn's always this bad and when he smiles or is happy we are having the best time. I still have a feeling of being robbed- or rather, my child being robbed of life. I listened to a lot of higher functioning autistic people who often talk about their amazing achievements and sort of saying, you can still have an amazing life and succeed and become this or that etc etc, but I can't see this amazing life happening for my child. I dont need him to become a lawyer or whatever, I just want him to be able to independently use a toilet. Be able to go to a shop. Be left for a bit and not hurting himself.

To the person suggesting adoption, even if there was some amazing place out there helping fmailies like ours (there isnt, and I have heard real horror stories about certain residential places and the way the young people are treated over there), the guilt would just floor me. My son is very dependent on me and would not understand what is going on, which is the worst thing ever. I had to go to visit my sick dad for 3 days a while ago and he completely withdrew into an almost catatonic state after a period of hysteria.

@Babsexxx for us the problems are not getting better, just different. One thing disappears, another appears. He has made some progress since he joined school in particular, but some other things regressed, or come and go.A lot of behaviours improved, but as he gets bigger, it's harder to contain him (wrong word, can't think of anything ebtter though). He will be 6 and still in a buggy. We trial every once in a while getting on a bus or going to a local shops with varying results.

OP, 6 is still so young. When my now 10yo was younger, we never thought he'd be out of nappies. He goes to the toilet independently now, asks for things using PECS, mostly walks sensibly from A to B holding a hand, he even uses the occasional word. Meltdowns are few and far between, although he has violent, destructive little tantrums but even they are mostly getting easier to snap him out of.

Some days do feel worse than others, it'll probably always be that way. But try to stay in the present as much as you can. This time next year could look completely different.

Icedlatteplease · 30/04/2023 18:58

I totally get it. DS is one very ill, very unhappy soul, he also has asd but in his case that isnt actually the source of the unhappiness

Someone said to me recently you are only ever as happy as your sadest child, which is a real shitter.

Frankly we aren't badly supported, it doesn't matter if your child isn't fundamentally happy.

LouiseWhippy · 30/04/2023 19:02

Try these ear plugs:

loopearplugs.com

They now market them towards parents. Can get various types - some so you can still hear conversations, others that block out the noise more effectively.

Einevinefine · 30/04/2023 19:04

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This^

oprahfan · 30/04/2023 19:05

@Pegsandsunshine Hello
i’m SO sorry you’re feeling this way right now. It is also understandable. You’ve pretty much had enough and help and/or advice is thin on the ground.
You need support, and you need it NOW.
I work with autistic young people and children.
Firstly, get in touch with Social Services ASAP.
Funding is available for children and young people with autism and ASN. Yes, you have to fight for it, when you’re already tired, and your marriage, understandingly, is strained to say the least because of the constant pressure and little, if any respite.
There are many residential/boarding schools who can and will help.
There’s many a Camphill estate within the U.K……get in contact and talk with someone ASAP.
There are other charities and specialised services that can help. There are many nurseries that can provide for children with ASN’s. Please please please get in touch with social services and tell them how you’re feeling and get support NOW.
I understand that this is not how you imagined life would be. It is understandable how you feel. Many other parents know exactly what you’re dealing with.
One day, you will get space to be you again. You will get help. You will get the support you need. You and your partner need to support one another, but the exhaustion is clouding so much.
I wish you well, and hope this week sees some changes for you all.

willWillSmithsmith · 30/04/2023 19:06

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Residential is one thing and perfectly acceptable if things are not going to improve as specialists can care for him and OP can visit him but adoption? That sounds so callous, like you’re returning goods you no longer want.

I worked with a lady whose daughter sounded very similar and she was cared for at a residential home and this lady was still very much her mother and a big part of her life.

x2boys · 30/04/2023 19:06

Hereforarant90 · 30/04/2023 18:57

OP, 6 is still so young. When my now 10yo was younger, we never thought he'd be out of nappies. He goes to the toilet independently now, asks for things using PECS, mostly walks sensibly from A to B holding a hand, he even uses the occasional word. Meltdowns are few and far between, although he has violent, destructive little tantrums but even they are mostly getting easier to snap him out of.

Some days do feel worse than others, it'll probably always be that way. But try to stay in the present as much as you can. This time next year could look completely different.

Its is very true ,my son is 13 in a couple of weeks he,s toilet trained ,and also communicate,s via PECS,in the main he's a very happy and lovng child ,but very destructive !

Palaver1 · 30/04/2023 19:10

I get you completely as my daughter is poking me showing me the signs for chips so we can get into the car go to macdonslds only to to have them thrown in the bin .
In all honesty this is a lottery post code some boroughs are better than others .
I have held onto a quite stressful job but my older children have been very supportive.
Its hard very hard and there is never an end to this my hands are shredded due to her scratching and each day there is some physical assault.
Its hard but as they grow, it becomes easier the stimming became less.
she goes towards fab ABA private school
All this provided by the authorities because no other place could cater for her needs.
Cahml are involved.
Marriage ended in divorce but that was a small price to pay. I worry when she's out of full time school...
I totally get you
Its not what we signed up to but it's come our way I hope through this you'll make some
Friends .
I met a couple this was years ago on this forum.
It gets better .
Its very hard to accept but once you cross that and accept it it will get better .
I'm ever so sorry that you are going through this and feeling this way.
Do you have any Saturday clubs .there must be something more to support
You must go to your Gp tell them how you feel you need support .
Have you bern offered any courses.
I went futher than this by leaving the country for help.
When I returned all of a sudden all help was given I'd begged and complained but it wasnt untill they got stern letters by other professionals that they sat up and after this it's been marvellous as I'm recognised I'm heard .
We have a social worker whoes actually there and cares.we have a support network and every family should be able tontap into this.

I pray you go to your Gp it will get better
I couldn't read all of your post as it was quite painful and brings back memories.
But it will get better.

Barnbrack · 30/04/2023 19:11

My eldest has a seizure disorder that lands us in hospital every couple of months and has done his whole life, so we have an emergency, he almost dies, we're out, we trial new meds, his emotional well-being and behaviour plummet, he stops sleeping, it becomes impossible to get to work on time, things improve gradually we get on top of it and it happens again. Unless you've had a child with ongoing medical and behavioural needs it's hard to imagine how much it differs from 'just' parenting.

I recommend some counselling if you can access it, it really has helped my anxiety, my PTSD, my ability to forgive myself for operating differently to the person I was at 25 pursuing my career above all else etc.

I also don't have the same level of needs to deal with day to day as you do op, that must be so neverending. We do have episodes of screening and meltdowns and now night terrors wince we finally got him sleeping. And always that niggling I ference from medical professionals that it's somehow your fault or you're not doing enough.

All the empathy basically. X

Pegsandsunshine · 30/04/2023 19:12

ASGIRC · 30/04/2023 18:50

I am assuming you dont have the means to pay for private therapy?

My mom is a speech therapist who works with autistic kids much like your son. She helps them communicate, either by signing, or by cards/pictures, but essencially, she helps the PARENTS on how to cope and how to deal. Give them tools to try and make life easier.

Sometimes she works in the home and does the bath/dinner routine with the parents.

So help does exist, but has to be paid for, more often than not... And if you dont have that kind of income, it can be really hard.

We looked around, private therapy in our neck of the woods is scarce and costs £120-50 for 50 minutes (sensory therapy). We can't afford it. We did some private SALT for a few months where all our savings went and it was great, and gave us some tools to work with, but partially we are just exhausted to do some of the stuff every day,but we got some improvement. Sadlywe just dont have means to continue with private support.
Sadly all in all, there is no miracle therapy that would make improvements we would hope for. The brain either does the magic or it doesnt, we can do lots, but at the end of the day, all the effort can also amount to nothing.

OP posts:
Haveallthesongsbeenwritten · 30/04/2023 19:15

Pegsandsunshine · 30/04/2023 19:12

We looked around, private therapy in our neck of the woods is scarce and costs £120-50 for 50 minutes (sensory therapy). We can't afford it. We did some private SALT for a few months where all our savings went and it was great, and gave us some tools to work with, but partially we are just exhausted to do some of the stuff every day,but we got some improvement. Sadlywe just dont have means to continue with private support.
Sadly all in all, there is no miracle therapy that would make improvements we would hope for. The brain either does the magic or it doesnt, we can do lots, but at the end of the day, all the effort can also amount to nothing.

I am very sorry to hear, it must be tough. Hope you get better days. Thinking of you.

ASGIRC · 30/04/2023 19:18

Pegsandsunshine · 30/04/2023 19:12

We looked around, private therapy in our neck of the woods is scarce and costs £120-50 for 50 minutes (sensory therapy). We can't afford it. We did some private SALT for a few months where all our savings went and it was great, and gave us some tools to work with, but partially we are just exhausted to do some of the stuff every day,but we got some improvement. Sadlywe just dont have means to continue with private support.
Sadly all in all, there is no miracle therapy that would make improvements we would hope for. The brain either does the magic or it doesnt, we can do lots, but at the end of the day, all the effort can also amount to nothing.

Is there no speech therapy around you?
But yeah, there will be no miracles, even with all the therapy and help in the world.

Your child is likely never going to be independent, but maybe be can be a BIT more independent than he is now.

I saw on one of your updates that the special needs school is helping. Hopefully the school can also bring in some more specialised help? Have you talked to them about it?

Sundaefraise · 30/04/2023 19:22

Hereforarant90 · 30/04/2023 18:17

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.

This is so naive. Having worked in a special school, you would be amazed how many pupils are with foster carers compared to the general population. No judgement here.

Coffeecoffeeinmytummy · 30/04/2023 19:28

I’m sorry OP. I think you need to focus on finding specialist respite care as opposed to therapy. That will be in the region of £20-25 an hour which may be more affordable for you.

Gymmum82 · 30/04/2023 19:29

KingSpaniel · 30/04/2023 18:36

@Gymmum82 theyre as rare as hen’s teeth and being closed everywhere because we can’t recruit staff 😢.

I don’t doubt that. This one is a chain of residential care homes/schools etc seems to be 3 or 4 locally that I know of. I don’t know much else about it other than i sometimes see the kids from the home going in and out if I’m walking past

x2boys · 30/04/2023 19:29

Sundaefraise · 30/04/2023 19:22

This is so naive. Having worked in a special school, you would be amazed how many pupils are with foster carers compared to the general population. No judgement here.

I.have a child in a special and I know a lot of special.needs parents ime,most kids are with their parents ,I don't doubt some are in foster care but it must be a really difficult decision to make .

Pegsandsunshine · 30/04/2023 19:29

ASGIRC · 30/04/2023 19:18

Is there no speech therapy around you?
But yeah, there will be no miracles, even with all the therapy and help in the world.

Your child is likely never going to be independent, but maybe be can be a BIT more independent than he is now.

I saw on one of your updates that the special needs school is helping. Hopefully the school can also bring in some more specialised help? Have you talked to them about it?

Private SALT is still very costly, and from what we have seen, they mostly offer what we already know. So we continue with what we have learned.

OP posts:
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.

x2boys · 30/04/2023 19:29

Special school "

Gymmum82 · 30/04/2023 19:30

x2boys · 30/04/2023 18:41

Is it for children full-time or respite ?
because respite type homes certainly exist,but there is a staffing,crisis ,my son was awarded two nights a month before Xmas ,we haven't even been invited to visit get as they are recruiting stsff.

Honestly I’ve no idea if it’s respite, full time or both. I just know it exists because it’s local and ended up looking at their website once when I was curious as to what it was. They have 2 residential centres and a school locally that I know about

roseopose · 30/04/2023 19:31

OP would you consider self referring to Early Help in your local area if it exists? Early help is voluntary and could be really useful for you in terms of having a professional involved who can help you source other specialist services who can support you. They can also advocate for you, be a listening ear, support you in many ways. It won't change your son and how he is but it might help you to cope even just a little better. It sounds like you're doing a wonderful job but need someone for you who you can vent to and who can advise you.

Hereforarant90 · 30/04/2023 19:32

Sundaefraise · 30/04/2023 19:22

This is so naive. Having worked in a special school, you would be amazed how many pupils are with foster carers compared to the general population. No judgement here.

Nah I have a profoundly autistic child and it doesn't occur to me to put him up for adoption. Thinking that is the solution is naive.

FloatingBean · 30/04/2023 19:33

Sounds like you need an early review of DS’s EHCP. You don’t need to pay for private therapies, they should be in F of the EHCP and therefore must be provided and enforceable if they aren’t.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

You can ask for a home OT assessment too.