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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

To have had enough?everyone has a limit.

67 replies

WhatAMum01 · 30/09/2019 20:53

My son is 5 and is severely autistic and has severe learning disabilities.He is also completely non verbal .He is very challenging to look after,he won't sit still,climbs on everything,wont walk with you and runs off at every possible opportunity.he has no way of communicating his needs other than pushing me in the direction of food which is his only communication.He doesn't sleep well despite being on melatonin, every night he awakes at 3am and that's him up until next evening. He pinches and grabs skin,pulls hair (hes very sensory),constantly.he destroys my home by throwing things on the floor and pouring any liquid anywhere.Hes smears his faces on himself and anywhere he puts his hands.He eats non food items such as paper plastic dirt anything really.i am on a never ending vigilance with him and I'm exhausted, totally and utterly destroyed actually. Hes currently going through a stage of crying non stop for no reason while grabbing my hair.i dont know why hes crying and hes probably frustrated but I dont know what's wrong as he cant tell me,I try my best to guess but I dont know. Hes at a SN school but hes not made any progress. I cant believe this is my life. I never thought it would be this hard, all the time. Every single day I think about how I could end it and I'd have to take him with me as we have no one to help us and family dont care.

OP posts:
Original poster
WhatAMum01 · 30/09/2019 20:57

He also screams non stop or hums loudly from the moment he wakes up until he sleeps,this is by far the worst thing about his Autism.theres nothing to stop him.most days I just cry.the noise is like a daily torture.

OP posts:
Silentlysinking101 · 30/09/2019 21:03

That sounds really tough OP.

I have no real advice as I don't have an autistic child, but his doctors and school should be able to give you support and refer you to support groups etc.

Do you ever get time away? You don't mention dad, is he around? Do. You get any support?

It genuinely sounds like you need a break from it all. Is respite care an option if no family...

NotGreenNotKeen · 30/09/2019 21:03

Oh honey you poor thing xxxx you're so strong keep going xxxx Is there any respite care you can organise for him? Xxx

LiterallyCantBelieveIt · 30/09/2019 21:06

You definitely need a break OP, I really feel for you. Is it possible for somebody else (his dad as somebody else mentioned) looking after him while you go away for a day or two?

Flowers
saraclara · 30/09/2019 21:08

I taught children like him. I loved the job, but I constantly thought about how terribly difficult life must be for their parents and siblings.

Are there family workers at his school, OP? We had parents arrive in crisis, sobbing, at times. Our family worker would do all she could to get respite for the parents, and support from various organisations. There's no magic bullet, but providing a bit of room to breathe, or the occasional full nights' sleep, at least gave parents like you a bit of space.

I feel for you. Please do reach out to the school and any organisations that might exist in your area.

Original poster
WhatAMum01 · 30/09/2019 21:11

I've been to a couple of support groups but to be honest they end up depressing me more as I hear about how hard things get and the stress etched on other parents faces holds a mirror to how I feel inside and look too.i have a loving husband who works all hours providing for us,we have two other children, he helps alot when hes home.Theres no respite I've been told as there's limited funding allocated and lots of years it doesn't happen in our district.hes only started school and the hours he away I'm at my happiest and actually dread him coming home.im crying writing this

OP posts:
Passthewinethanks · 30/09/2019 21:12

No advice just wanted to send love xxxxx your little boy must love you so much . Even if he does not show it

Silentlysinking101 · 30/09/2019 21:18

Whatamum you are grieving what you feel you have lost... It also sounds like you are depressed.

Please please seek professional help with how you are feeling. No one will judge you. I promise! But you need to tell people that you are not coping and get some support.

You are not alone, and hopefully once you start to feel more in control of how you are feeling things will ease with your DS.

Be kind to yourself!

Noway85 · 30/09/2019 21:19

Big hug op, your doing a great job in a really different situation. My son is also has severe autism (non verbal) and a severe learning disability.

Do you get any respite? You can self refer to the children's with disability social care team at your local authority. Best thing i ever did, it's benefitted us both.

Communication wise do you use pecs/makaton or any other type of aac?

Poo smearing will be sensory seeking. Firstly to stop the mess you could try a onsie back to front. Lots of messy play to help with his sensory seeking behaviours. Playdoh, water, sand, kintesand, orbeez, shaving foam, coloured rice/noodles, gloop etc. Come over to the sen boards, lots and lots of experience of there.

Original poster
WhatAMum01 · 30/09/2019 21:20

@Passthewinethanks,I think he must and then on other days I think does he even know I'm his mum?I've never heard him say mum,it breaks my heart.some days I dream of his voice and wake up with a seconds hope.

OP posts:
saffy1234 · 30/09/2019 21:22

OP this could be me a year ago my son is 6 (4th sept) and was exactly the same I'm not sure what to tell you other than mine has settled slightly ,still doing all of the stuff that you've mentioned but just less frequently.

NotGreenNotKeen · 30/09/2019 21:22

Can you afford to pay for private care?xxx

hidinginthenightgarden · 30/09/2019 21:23

Have you got some flash cards you could use to help your son communicate? One for food, one for drink, one for cuddles, one for various toys, one for sleep and so on?

Original poster
WhatAMum01 · 30/09/2019 21:26

@Silentlysinking101 thank you. I came to terms with my sons diagnosis a long time ago and I'm not depressed as I know depression.im depleted by it all,its just so hard.that doesn't mean I'm depressed,I'm human so like anyone else I have only so much patience ,strength,resilience ,energy which I chuck at our situation every single day.ive just realised the thought that this is it for the foreseeable future till the end of our days its such a hard pill to swallow.

OP posts:
Original poster
WhatAMum01 · 30/09/2019 21:29

@Noway85 @hidinginthenightgarden hes been discharged from SLT twice they said hes really not ready for any communication as hes not able to sit or focus for even a second.i have the cards at home he wont even look at them

OP posts:
Hooferdoofer37 · 30/09/2019 21:30

You say your DH is out working all hours to support you, but have you considered going back to work and sharing the childcare load more evenly between the 2 of you?

Original poster
WhatAMum01 · 30/09/2019 21:30

@NotGreenNotKeen no unfortunately not.my other kids suffer too as we are unable to leave the house really apart from a day at the weekend when I have my husbands help.

OP posts:
Original poster
WhatAMum01 · 30/09/2019 21:31

@Hooferdoofer37 it's a family business and something I can offer no expertise in.

OP posts:
Tonkerbea · 30/09/2019 21:33

I have no advice- just hoping you find the respite you need. Your little boy is so lucky to have you as his mum

Noway85 · 30/09/2019 21:36

Salt don't have a crystal ball op. We where told the exact same thing. He now uses an ipad aac app to communicate in sentences for requests, rejection, some basic social interaction. Keep going and don't give up, you never know what will happen.

Original poster
WhatAMum01 · 30/09/2019 21:38

@Tonkerbea thank you.i dont feel hes lucky,poor mite was born out of me my DNAwhich must have helped make him as he is.thank you for being kind.

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MNHQ
FlissMumsnet · 30/09/2019 21:39

Hello WhatAMum01, we are really sorry to hear you are feeling this way. We're please there is so much support for you here.

We hope you don't mind, but when these threads are flagged up to us we usually add a link to Samaritans website, or email them on [email protected].

Support from other Mumsnetters is great and we really hope you will be able to take some comfort from your fellow posters, but as other MNers will tell you, it's really a good idea to seek RL help and support as well.

Do feel free to post on the SN boards as Noway85 suggests - you will find your tribe and hopefully get some advice about where to go from here.

In the meantime here's some Flowers for you.

We hope things look a bit brighter for you soon

Greeni · 30/09/2019 21:39

I am in the exact same boat, ds is 9 but has been turned down by every special school and mainstream in two counties. It’s the noise that gets me too.
I’ve no advice as I’ve found very little support and nobody seems to care. Flowers

Original poster
WhatAMum01 · 30/09/2019 21:40

@Noway85 was he as badly affected as my son?my son cannot concentrate on anything.how did you get your child to focus?

OP posts:
Neolara · 30/09/2019 21:40

Sounds incredibly difficult OP.

Have you got the book More Than Words? It's a book for parents of kids with ASD with really practical suggestions for how to develop communication / social communication skills. Lots of ideas for how to encourage non verbal kids to communicate.

But it also sounds as if you need some respite. Is there a social worker at your ds's school who might be able to point you towards any services.