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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:
newyork2017 · 30/09/2019 21:40

Sending lots of love OP.

No wonder you are in such despair & think talking like this is really brave & first step on journey to getting the right help.

S&L probably can't offer you much but surely that is not all that is on offer to support you? I know you are weary but I think you need to start demanding the right support not just for you & your family but for your son.

Everything is being squeezed & the burden of this being placed at social care when surely this should be back with NHS. I think you need to tell GP you are at breaking point & care is needed in some form. If you feel your being fibbed off the MPs, councillors etc could be the route!

What are school saying? Could they support your application for more help?

Your doing a great job OP but this is extreme & no one family should be left to cope themselves.

Noway85 · 30/09/2019 21:42

Yes op. No speech, wouldn't sit still, no concentration. He would wreck everything in site, smear poo everywhere, attack me constantly. Communication is key. Keep at it eventually something will stick xx

Original poster
WhatAMum01 · 30/09/2019 21:43

@saffy1234 thanks for sharing. Have you any advice on how I can calm my son down?what changed for your son?

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Silentlysinking101 · 30/09/2019 21:43

@whatamum01 I'm sorry if I have offended you, but your opening post talks about ending it all and then you follow it up with dreading him coming home.

I am sorry but it absolutely sounds like you are suffering with depression, there is no shame in it. Given everything you have posted here it is absolutely understandable that you are overwhelmed and struggling.

For the ake of yourself and your children please consider seeking some professional help for your own mental well being

Leah91 · 30/09/2019 21:49

I'm so sorry your situation is so difficult. Please go to your GP and tell them how you feel, it sounds like you need urgent help. I hope things get better for you and your family

Original poster
WhatAMum01 · 30/09/2019 21:54

@Noway85 please can you tell me how eventually your son got to using communication?how did you get him to look and listen?

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Original poster
WhatAMum01 · 30/09/2019 21:57

@Neolara yes I have this book ,I've tried and still refer to it at times,to be honest it seems to be applied at kids with Autism minus severe learning disabilities. Thanks for replying

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Original poster
WhatAMum01 · 30/09/2019 21:59

@newyork2017 was told by gp theres no respite maybe I should take him to Cahms.to be honest Gp didn't know what to say she offered no help.

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Noway85 · 30/09/2019 22:02

The break through for us was switching from pecs (which he had zero interest in) to an aac app. He quickly realised that by pressing one button he could get what he wanted. We concentrated on highly motivating items. He had to press the button or he didn't get what he wanted. This was the initial stage and eventually we added further vocab to his sentence before he got the item. With pecs he basically had a piece of paper, passing it backwards and forwards was pointless. With his app he didn't have to search through tons of pictures and he has his own voice which talks just like everyone else does. There are so many communcation systems available. Tons of apps, makaton, podd etc. Something will stick, you just have to keep going and you will find it. X

Noway85 · 30/09/2019 22:04

Also your gp has no idea about respite. The only people who can assess you as a carer and your childs needs is the children's with disabilities social care team. You can self refer. Nothing to be afraid of, they are totally seperate from child protection.

Original poster
WhatAMum01 · 30/09/2019 22:08

@Noway85 what app do you use please?thank you so much for all your advice.

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newyork2017 · 30/09/2019 22:09

I know it sounds scary but could contacting social work be the next step?

Loushaw82 · 30/09/2019 22:10

I have a 11 year old with asd, he was very similar and very sensory at that age enjoyed slamming cupboard doors and everything went in his mouth. Best thing we were recommended was ear defenders and chewies to help with the sensory needs.

Original poster
WhatAMum01 · 30/09/2019 22:11

@greeni sorry did reply post has disappeared.im astounded why are Special needs schools rejecting your son,isn't he why they are there for?I didn't even know this was allowed. What are you doing now?I'm so sorry friend ,I wouldn't wish this on anyone

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Noway85 · 30/09/2019 22:12

We use proloquo2go. Lots of others available. This charity might be able to help you. They deal with all types of alternative communication.

acecentre.org.uk/

PiratesvAliens · 30/09/2019 22:15

Oh my goodness you poor thing, this sounds so hard.

Is residential school an option? Im sorry I know he's so young so not sure if this would be at all appropriate but you sound so desperate.

How old are your other children? Could your husband at least look after your son on his own for a day each weekend so you can spend some time with the other two on their own?

Waveysnail · 30/09/2019 22:18

Sorry if this has been repeated already but do you have a disability social worker.

www.gov.uk/help-for-disabled-child

Waveysnail · 30/09/2019 22:19

www.gov.uk/apply-direct-payments

Direct payments to payments which you can use for childcare respite

Waveysnail · 30/09/2019 22:21

Also has any pead suggested medication. My cousin is severely affected asd, was non verbal. It was found that a medication regime of adhd meds and anti anxiety worked wonders - liquid form so could go in his food

saraclara · 30/09/2019 22:25

www.gov.uk/apply-direct-payments

This is the sort of thing that our family workers help parents apply for. And some of the teaching assistants offer to do the respite care so that the child is looked after by someone who knows them well. You simply pay the person who does your respite care from the direct payments scheme.

If you don't yet have a disability social worker, PLEASE get in touch with social services, OP. That will open up more options to you.

Mummoomoocow · 30/09/2019 22:29

My severely autistic nephew was diagnosed with adhd before he became verbal. He couldn’t sit still long enough for any of the help for his autism to become beneficial. He started adhd medication and it was like the fog cleared and he began to communicate so much easier. The faeces smearing stopped when he was 6 so hopefully it won’t be much longer

Mummoomoocow · 30/09/2019 22:34

My nephew is now 16 and although he was told he would never be fully verbal, he’s fully verbal and doesn’t stop talking most of the time! It’s incredible. My sister fought for every service she could and just survived through it. It was day after day of hating life for a long time. You can do this OP, just imagine, one day you’ll be taking him to Disney and benefiting from cutting queues! You can do this. Every mum thinks they can’t.

Original poster
WhatAMum01 · 30/09/2019 22:37

@Waveysnail no social worker, too scared despite what folk say.hes on Cahms waiting list to to assessed for ADHD as I feel he must be as he cannot sit still or focus at all

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Original poster
WhatAMum01 · 30/09/2019 22:40

@Mummoomoocow wow I cant tell you how much your message has lifted me.my son is on Cahms list for AdHd I pray he get something which will give him a fighting chance at this life.just now we are all just surviving not living.thank you

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Original poster
WhatAMum01 · 30/09/2019 22:41

@noway85 thank you ,will look into it and the charity

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