To have had enough?everyone has a limit.

[WhatAMum01]

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.

You’re welcome, in the meantime look after yourself first, find some groups for mums of asd children and call Samaritans as often as you’d like to. My sister called them every day at one point

No problem op, things will get better. The samaritans are always there if you need someone to talk to. I've called them on more than one occasion.

Please reconsider regarding the children's with disabilities social care team. The respite has made so much difference to us. Our social worker has helped us with so much stuff that I'd have never got sorted!

My friends boy was EXACTLY the same as yours at 6/7 years old. He would tip liquids out, totally non verbal, wouldn't sleep, would run away at every opportunity, destroy the whole house, wouldn't look at anyone or anything unless he chose it, would drag her about to guide her, was violent and often screeched etc etc.

She asked for a disability social worker and the family have had so much support. Not just for her disabled son but for her other kids and herself too. There was a limited amount of respite days, lots of extra training and support type groups which taught her how to communicate and how his brain might work. There was also additional grants and funding her and the other kids received and equipment for the garden that helped her autistic son. They made sure he was in the right schools and you could honestly tell the difference once he was settled at school. He went from totally no communication to using the flash cards and then like a story time line book. It helped them both communicate with each other by her being able to show him what their day was going to look like.

I'm sorry I've got no direct experience but in this case I definitely saw social services improve this families lives!

I work with children similar to your son OP. I suggest beginning communication with something motivational (it’s usually food). Try and get your other children to model the exchange or pointing at the picture for him, so he can see them get the food when they do. If he can’t do the photos offer a choice of two items so he will reach for it. If you don’t want to try an app yet you can take photos on an iPad and make a folder for choosing the things you’re offering. If poinys/touches the pic it will enlarge. Say ‘yes, and name the item’ then give to him. Keep it really simpler The screaming is his way of blocking out noise that is too loud for him, try ear defenders or playing white noise.
Get a social worker, they will do an assessment of need and the score will relate to a budget. With the budget you can access short breaks or support workers.
Remember all behaviour has a reason and you will get to understand your son more because you love him and you want to

He was excluded when he was 5 and has very long, detailed ehcp, I’ve had one school say they can meet needs but are full, the rest say they can’t meet needs. Even an autism specialist school can’t meet his needs apparently. So he’s missed out on 4 years of education, socialising, friendships, independence etc we’ve recently moved county and they’re trying to get him into a private school.
And just to let you know I didn’t say a word until I was 6 and only to my mum until I was 12 and now I’m a perfectly normal adult.
Ds was non verbal, I was told he’d never speak, he had speech and language and although he’s still classed with speech and language and communication delay, he does speak. Have you tried makaton and pecs?

no social worker, too scared despite what folk say.

Scared of what? A disability social worker's role is nothing like the role of a social worker who investigates neglect etc! Seriously, they are TOTALLY different, and their role is purely to get you the help you need. It's a shame they even have the same name, as it clerly puts you and possibly other parents off.

You really won't get access to the help you need without one, so PLEASE look into it. Even the most middle class professional parents at my school (with fancy houses) had their disability social worker's help.

CAMHS will be no help to you. They deal with child mental health, not disability. Your child doesn't have a mental health issue.

For the humming, try a nice pair of earmuffs for yourself to take the edge off. Take care xx

I have friends with a severely autistic teenager. It took the dad having a complete breakdown for them to get help. They have a really good respite package in place now. It's a real
Shame that it came to breaking point to get it. No advice but

No advice but lots of sympathy. I can't imagine how difficult it must be for you and your family. I'm not surprised you feel overwhelmed by it all. I think everyone would.
I really, really hope you get the help you all deserve and that things improve.
💐💐

I am so sorry to hear what you are going through OP. If I knew you I would come over and help any way I could! Do you have any or family that you maybe think don’t care but actually you haven’t told them how badly things are affecting you? You might be surprised at what people may be willing to do to help out. Otherwise there may be some help available through the council / school / GP. I think you should try to arrange something nice for yourself every so often. Like a day away or a night at a hotel to get some decent sleep, when your DH can look after the kids - now and then it will give you something to look forward to x in the meaning here are these for you x

I agree with the poster who said you sound depressed- not just your original post but also the comment you made that your son was made with your DNA, which probably didn't help him.

Glad if he's waiting to be seen for ADHD- there are also meds they can give to help calm children with autism- has he been tried on any of those?

Hugs- hang on in there xxx

• no social worker, too scared despite what folk say.

Scared of what? A disability social worker's role is nothing like the role of a social worker who investigates neglect etc! Seriously, they are TOTALLY different, and their role is purely to get you the help you need*

I just wanted to repeat this.
I worked in child protection we were a completely different team, different jobs, different experience and worked in different buildings. We would not have had any involvement with your dc and family because you are not neglecting or harming your dc.
You need a social worker in a specialized team to help to provide access to respite, young carers support perhaps residential care in the future. This is nothing to do with child protection.

I hope some of these organisations can help you either via support workers, respite and financial help. It's not right that you're left alone to deal with it by yourself.

Do you get DLA & direct payments for him? Can you use some of that to buy in respite help? Are you claiming carers allowance?

For the humming noise, have you tried noise cancelling earphones for yourself?

contact.org.uk/advice-and-support/

www.autism.org.uk/services/helplines.aspx

The national autistic society has family support workers. Please get in touch with them.

Hi @WhatAMum01 now theres a question,like yours my son is severely autistic,he suddenly started sleeping better and that seemed to calm him down.His communication also bettered due to this.Have you tried anything else to help with the sleeping?
Also re a social worker i used to worry about that too,i still dont have one,but some friends do,they can really help to open doors for extra help.
Lots of love xx

Thanks everyone for taking the time to reply to me,yesterday was a particularly low day and it has continued today with his crying non abating,however I have zoned out of it as it's been so continuous, I feel void of emotion now.i will take on each and everyones advice and will try to be hopeful that he will improve with age and try to access the right people involved in helping him/us.

How are you doing, OP? Thinking of you. xx

Hi @WhatAMum01 i know this thread is very old, but I was just wondering if you could give me an insight into how things are now with you son? My son is the same age as yours when you first posted this and exactly the same as you described. I’m living a nightmare and I’m scared. I just wondered if there was a light at the end of the tunnel 😔