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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Stuck in 24/7 with a disabled child is killing me

100 replies

WhatAMum01 · 26/03/2020 10:11

Just this.he is severely autistic and has severe learning disabilities his thing is climbing he just wont stop getting on the windows and hitting them furiously with his hands and head, like non stop.soon as I get him off one hes ran into another room and is at it again. Theres no distracting him hes fixated.ive been doing this for five days,his special school has shut.im suffering mentally so much.hes up at 6am every day whacking the windows. God help me.
I have 2 other children my husband is a front line key worker and needs to work.

OP posts:

Original poster

WhatAMum01 · 26/03/2020 21:30

Hi all hes had occupational therapy one session and she said that as I was already doing Every single thing they'd suggest she couldn't help anymore. I think now is the worst time and most unlikely time I am to get help due to everyone isolating etc,irony is it's now I need the help the most.i can ask and without a doubt will probably be refused it without much thought as it's a national indeed worldwide emergency we are in and disabled kids and a mothers stress arent top in the pecking order of importance. Stuff like music therapy or trying to massage him dont work he is constantly wanting to get away, run, throw things on the floor, climb and bang windows ,pour liquids everywhere chew shoes ,he hasn't the concentration or the understanding. I can only take him out in a special needs pram.

OP posts:

Hazelnutlatteplease · 26/03/2020 21:41

You dont start with the massaging if youve got one that wants to move.

Stage one trampoline, gym ball, peanut ball, climbing frame slide. All day if necessary.
Then inside dark with sparkly and calming noise.

Keep going. It wont work straight away but ut will help given time.

crazymare20 · 26/03/2020 21:41

My daughter was the same with doors. She loved getting something back from an action (the sound of the door banging). Would a drum set help? He can hit that as much as he likes. Fibre optic lights in window? Loads of cushions and duvets on floor so he can climb and jump as much as he likes? Beep running test on garden? Sorry your struggling op

N0tfinished · 27/03/2020 00:00

Give. The extraordinary circumstances, could you request phone consultation with pediatrician re medication? It doesn't have to be forever but it might get you through the next while.

I get what you're saying - it was soul-destroying trying therapies with my DS. I'd spend ages setting something up & it would be a disaster. He just couldn't focus on anything at all. I would definitely try some heavy work/deep pressure activities though. I would put some various things in a backpack (big bottle of water etc) & put it on him, or I would press down on his shoulders - he still really enjoys this.

PickAChew · 27/03/2020 00:16

I have 2 with asd with conflicting needs and do really feel like we've been dumped from a great height. Eldest was allowed to stay at school, but couldn't face it, anyhow. The endless refereeing is exhausting and I'm dick and tired of finding the things that keep Ds2 occupied and out of ds1's hair hidden, as well as his clothes, shoes, etc, dumped in the bin.

Im really dreading a tighter lockdown because an hour wandering through the woods and nature reserve and clambering up hills with Ds2 is the best bit of our day. DS1 lounges around being grumpy and refuses to leave the house.

PickAChew · 27/03/2020 00:19

Stage one trampoline, gym ball, peanut ball, climbing frame slide

All readily available at the click of a button, currently

BenjiB · 27/03/2020 02:19

I get this 100%. My severely autistic son Is an adult but usually boards at his specialist college term time. He’s been there since September and life has been so my much easier For the whole family. I’ve enjoyed him being home in the holidays but after a few days I can tell he’s bored as his life there is packed with activities. He’s usually really happy to go back. College closed down on Tuesday. 2 days in and I’m tearing my hair out already. He needs 2 to 1 outside so that’s going to be almost impossible. I’m absolutely dreading the next few months 🥴

Lofari · 27/03/2020 02:34

With you 100% OP. My son is nearly 5, severely autistic, non verbal and likes to climb. Absolutely no safely awareness, hardly any understanding and a huge sensory seeker. He is constantly on the go. I have 2 older kids too who I am apparently now meant to be home schooling but my day is constantly making sure mt youngest is safe.

BecauseReasons · 27/03/2020 02:35

My sympathies, OP. Do you have anywhere that can hold him? Even just a room that's safe enough to shut him in for five minutes?

Does he have a weighted blanket?

BecauseReasons · 27/03/2020 02:37

Oh, and I'd put some clear plastic sticky window covering on your windows just in case he manages to break one- should keep any bits from falling to the floor.

Disabrie22 · 27/03/2020 06:45

OP as someone who has worked with severely autistic children and who has a severely autistic cousin - my heart goes out to you and all the other posters. There’s some good advice on here - all of you deserve a medal xxx

zyxray · 27/03/2020 06:47

How old is he ? Can you redirect it .. drum kit / musical instruments or climbing frame in garden. I'm sure you don't want to be in the garden at 6am but can you sit indoors and watch him with a cup of tea ? ( I suppose that depends on how safe he'd be and the size of tori garden)

You could always ask for things on your local Facebook say what you've told us. I always see the slot together plastic climbing frames being given away ( little tykes type ones) might be too young if he's school age but it's something safer to climb on or a play house with shutters ?

It's a hard time

Noconceptofnormal · 27/03/2020 07:48

My sympathies OP that sounds so difficult.

I'm assuming the school has to remain open for where both parents are key workers?

I would explain that it is impossible for you to have him in a home environment with two other children and see if they can help any more.

I probably also shouldn't say this but I wonder if it is possible for you can get a very part time job in a key worker role so the school have to take him.

SarahMused · 27/03/2020 08:00

Take the school place for your other children. Schools are social distancing and it is much better for them than the current situation. Ring social services and tell them that you are desperate and that you are worried that he will hurt himself and your mental health is suffering. There should be special schools open in your area that can take him. You have to insist, it is not possible to carry on as you are.

Original poster

WhatAMum01 · 27/03/2020 21:13

I have tried allday to get through to social services to no avail.ive also tried to call Drs to ask for help no answer,and local pharmacy arent accepting calls
What are we meant to do?
I take him in a pram on two walks a day it's the only way I can calm him and means hes more likely to sleep
I'm now worried I'll be stopped by police

OP posts:

Rinsefirst · 27/03/2020 21:23

You’ve had the toughest of weeks. You should be allowed out twice as have exceptional circumstances. I doubt the police would comment but if they do they will alert social work ... which is what you were trying to do - so don’t fear being stopped

Mrsjayy · 27/03/2020 21:26

On Monday phone you r other kids school and see if you can get them in I know you are very worried but it will ease your load.

User1704 · 27/03/2020 21:30

You’ve literally just described my son here! He’s just turned 7 big for his age very strong. Climbing and banging windows is also his favourite thing! I’m dreading how long school is going to be closed for! The last half term was really really hard as he was going through a rough time meltdowns all day every day but so far this week off he has actually been calm. He has a small trampoline indoors which he loves and he’s just been in the garden all the time. Is this possible at all?
Another thing that usually works for us is a bath or shower he spends hours a day in one of them water seems to calm him.
I know we’ve had a good week but also know this won’t last and I’m nervous. He sounds exactly the same non verbal no understanding he’s broke most of our house to the point now we have very minimal furniture. Sofa and a tv on the wall that’s it! People think we’ve just moved in.
Swinging bouncing and water are the only things he’s interested in does your son enjoy any of these?

GoodStuffAnnie · 27/03/2020 21:32

Please don’t give up! I know this feels like an extra burden.m to be your own advocate. But shout and shout some more. You will get somewhere. Do you have a tough friend who can help you insist on more help. There is no headteacher who would not understand you need help. Sending so much love xxxx

DianaT1969 · 27/03/2020 21:34

In this weather I would let him stay in the garden all day OP if it is safe. I'm sure you would get a good response for equipment such as yoga ball, wheel barrow, trampoline etc if you ask on Nextdoor app. People would leave it outside, so no need for interaction.
Good luck and I hope you get help.

User1704 · 27/03/2020 21:34

Just another thought which isn’t going to be much use now but for the future. We’ve just been given a grant to have adaptations to make our house safer. The work was due to start now but been put back since everything’s closed down. But we were getting things like Perspex put over our windows we were offered Perspex for our walls (he’s chewed the walls) they even offered to do a full padded room so he has somewhere safe to be when he’s having a meltdown. It might be worth looking into this once this is all sorted. We got it through our OT who assessed our home and made recommendations your entitled to up to 30,000

Allways123 · 27/03/2020 22:01

Agree with what everyone has said and more.. If climbing and jumping is his thing then perhaps you could adapt a room for him to do this safety.. My ds used to throw a ball over our fence, climb over the fence and fetch the ball and repeat the process over again.. It could easily go on for hours.. In his mind it was 'fun'

Original poster

WhatAMum01 · 27/03/2020 22:04

@user1704 I've applied for a safe space through ot just before this kicked off,we dont know when or if we will get it now,even though the charity felt we would get it.who would we ask for a grant from?perspex glass would help,I'm so worried hes going to go through the windows

OP posts:

Original poster

WhatAMum01 · 27/03/2020 22:06

I cant leave him in the garden,its enclosed but unfortunately he eats everything non food, pica it's called, so leaves dirt,snail shells all go in his mouth as well as trying to drink the puddles

OP posts:

Original poster

WhatAMum01 · 27/03/2020 22:10

@User1704 yes he enjoys water too,but tries to drink bath water or pool water and he splashes so furiously it floods our bathroom.i don't care about material things one jot but for him I wish I was rich so we had space to care for him adequately.

OP posts:

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