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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:

EverydayLife · 26/03/2020 18:32

How old is he op? Does he have any medication? Would there be a chance of increasing it at the moment if so? Does he have a consultant who you can ring for advice?

I am a single parent with a disabled child (different presentation from yours) but when I’m struggling I ring Camhs and tbf they always give me a telephone consultation.

Roo2012 · 26/03/2020 18:38

Do phone anyone and everyone who might be able to help, health visitor, GP, school etc. Since your partner is a key worker is it possible for your other children to go to school or nursery so at least you only have to contend with one child? Lots of non mumsnet hugs as it must be so tough.

QueenofLouisiana · 26/03/2020 18:41

Phone your LA, find out what provision is in place to support your vulnerable child. As he is in specialist provision, I guess he has an EHCP so could be in school.

Hazelnutlatteplease · 26/03/2020 18:47

Can you get some music going? Google/you tube autism sensory music, play it through your tv.

Do you have anything to get him spinning like this

Or a gym ball you can roll over and bounce on (take to facebook and i can guarantee someone will donate you one)

The in the opposite direction as it were, turn off all the lights in one room or make a tent with a sheet. Underneath turn the disco ball on or try googling/you tubing "sensory calming music".

If you have a ball try rolling it over his body.

Bubbles. Any kind. Ideally a bubble machine

helpfulperson · 26/03/2020 18:49

I know your husband is a key worker but maybe he just needs to take some time off. Because if you end up sick he will need to be off anyway. It's worth him talking to his employer.

NeurotrashWarrior · 26/03/2020 18:52

I completely understand as I teach children with autism.

Is there a sort of family key worker at the school? Try to let them know as much as possible. I wonder if they can contact an OT to lend some sensory equipment? I don't know how easy it will be though.

NeurotrashWarrior · 26/03/2020 18:54

Definitely contact the LEA too and your Gp. You both need support.

Allways123 · 26/03/2020 19:02

How old is he?

Allways123 · 26/03/2020 19:11

I work with autistic children and my sons autistic.. He did this when he was about 4. It could be stress because he wants to go out and he can't communicate this to you so he goes over to the windows and bangs on the windows.. .see if you can try to get him to focus his attention on something else and then reward him with something that you know he really likes when he does.. It may not work right away but keep being consistent.. If he really wants to go outside try taking the kids to the park abit later.. When you know there's not likely to be much kids around.. I had to do this because I had 3 young.. kids inc the one with autism..

raffle · 26/03/2020 19:18

Contact your GP, there are medications that can help him. They do not need to be long term. Your situation sounds unsustainable. Sending you strength and sympathy.

4ppe · 26/03/2020 19:23

I have 4, DC1 is autistic and struggling hugely. I had a meeting for after Easter to start her EHCP with the senco so doesn't currently have one in place. She's violent, running away, self harming. Its absolutely awful. We've screamed cried and chased all day. My husband is a key worker so he's out at work.
I'm alone with 4 kids and 3 have been confined to 1 room the majority of the day so I can keep them safe whilst DC1 tears around the house . DC2 6y old has been having to care for the younger children and it's not acceptable. It's not their responsibility but I've been stuck.
The school are going to take DC2&3 for a couple of days a week as they would consider them vulnerable after DC1's violent behaviour in the weeks before they closed. I don't really like this idea as don't want them mixing unnecessarily but there are 3 staff and 3-6 kids depending on days. The numbers sound better but you just don't know how seriously anyone else is taking it so I would just rather everyone was safe at home. Only home isn't currently safe.
My husband has suggested my Mum moving in whilst this is going on but I worry this isn't allowed either. We may not have a choice because the last 3 days have been awful and I just don't see how I can continue doinig this to the other 3. I'm hoping as the new routine becomes a routine it may get better. But it's taken 14 months to get into the one we've just broken and we were only starting to get settled in January.

No answers but I do understand.

Original poster

WhatAMum01 · 26/03/2020 19:36

Hi all,hes 5 going to be 6 very soon. Big boy ,strong as an ox.his thing is climbing ,he can't stop ,he climbs on everything and anything and then bashes whatever he reaches,he hits tv screens windows doors walls. I know its because he enjoys the sensation, theres nothing to deter him.school seems to have just completely shut,even though my son is vulnerable they haven't made provision for children like him.my other children's primary school did offer a space for them but to be honest I was scared of them carrying illness then me getting it and then I dont know how my family would manage.i sometimes think about us,really look at us from the outside in and feel so so sorry for us. I love him so much but it's so hard,every single day.

OP posts:

purplerain44 · 26/03/2020 19:41

I am a music therapist and the special school I work at is allowing me to do virtual sessions with some of the children - precisely because of the reason you're describing. Is that something you could ask your school about?

Original poster

WhatAMum01 · 26/03/2020 19:45

@4ppeit awful isn't it, not the dreamed of much wanted motherhood we imagined.

OP posts:

Hazelnutlatteplease · 26/03/2020 19:55

Have you got enough space/funds inside for something like
this
this
Or even a basic but surprisingly compact like this side

But seriously all that sensory stuff will help

Original poster

WhatAMum01 · 26/03/2020 20:00

@hazelnut no haven't the space,do have a slide in garden.

OP posts:

Hazelnutlatteplease · 26/03/2020 20:08

Get him outside in the garden! (Assuming its your garden youre allowed in it!) Up and down the slide in the garden and on a trampoline if you can get hold of one! Then the calm down sensory stuff in the bedroom (tent bubbles lights you tube calming music) so you start to encode inside with calming stuff, outside with anything movement related

Boulshired · 26/03/2020 20:14

Week 1 and I already have a black eye. Ds is a teenager and still a climber. I have as little furniture as possible. I have digital key pad handles on all my doors to control access. I Have just copied a friend who used some cladding and wood to make a false wall for tv that has Perspex cover over the tv. The cupboards I do have are tall and I make fake boxes on the top to reach the ceilings.

4ppe · 26/03/2020 20:19

It really isn't.
Up until 18 months ago everything was much more manageable for us but hormones have hit and it's just awful now. I really thought we knew what we were doing back then.
My DC has huge sensory needs too. It's so hard when something they need is dangerous. DC's OT has sent us some theriband to do some things with but it's new so I've got to spend some time introducing it before we can use it!

Orangeblossom78 · 26/03/2020 20:32

my other children's primary school did offer a space for them

I would go back and ask for it, perhaps. You have a key worker coming into the house as well which odes also bring some risk, but it your position I would take it up.

Rhumatoidwarrior88 · 26/03/2020 20:36

Trampoline ? , iPad ? Is he sensory seeking like my nephew . I can't imagine what your going through with three children plus one autistic child

Original poster

WhatAMum01 · 26/03/2020 20:52

@Boulshired dear God this is what I fear we too will end up like.how do you keep going?do social help you?I was told by schools head that social work think hes too young for us to get respite and strategies could be put in place instead,I'm flabbergasted, I've gone back to them saying it's not good enough and they Need to help.still no word,its been going on since last summer.whyis life made harder by these people who are meant to help.?

OP posts:

RettyPriddle · 26/03/2020 20:53

I’ve got a child with SEN and an EHCP who is at home, so I understand. Regarding help, it’s a grey area, as kids with EHCPs are regarded as vulnerable and so could be in school, but if your school is shut, they’ve taken that option away. You can either: take up the places for your other children or phone Social Services and demand that you speak to someone urgently. The trouble is there are no carers working to provide respite, even if you got funding, but a social worker may put pressure on education to provide something. You can’t carry on like this; you need support. Also try your MP and GP, but remember they will only do something if they think you’re at breaking point. You have to make a fuss. My child is doing ok; we are managing, but you have my sympathy OP. I don’t know how the government thinks SEN families will cope without any support, potentially for months. All support mechanisms have gone overnight; family and friends can’t even visit to give us a break. It’s shocking xxx

Boulshired · 26/03/2020 21:07

whatamum respite was easier to get once he was seven and has increased as he got older. On paper DS has a good respite package 2:1 with 40 overnights a year but he is running out of providers to have him because of violence and his climbing and escaping, OT have been useless, I have had to research constantly on trying to secure my home.

N0tfinished · 26/03/2020 21:09

Hi,
Another one in similar position here. DS is 12 now, also non-verbal. We're struggling but my DH is working from home & my other child is 14, so I'm not as isolated as you are. I'm so sorry, you sound so desperate.

This is definitely a time to shout for help. I'm not in the UK, so I don't know where to advise you to go. I do know that I struggled on for years pretending I was ok.

Sounds like your lad is sensory seeking. Have you ever had any OT input? Sensory Integration made all the difference to us at that age, lots of deep pressure and heavy work. My DS was very like your boy, just constantly running through the house, no 'special interests', never liked toys etc.

A peanut roll is a good place to start. Roll him over it to get pressure through his trunk and legs, or lay him face down on his bed & roll it over him like you're rolling out pastry. He can sit on it & bounce.

There's some ideas on here:

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