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

[WhatAMum01]

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.

I don't understand. There should be provision for him if he has an EHCP. The special school that I worked in until I retired, and the one that my daughter works in, are open for that reason. Why isn't yours? And in the absence of yours, is there no hub school taking those who desperately need to be in school?

@whataMum01 I'm sorry to hear you are having such a tough time. I'm not sure if this is of any use but I have read about the work of this charity quite a bit:

www.londonautismgroupcharity.org/contact

It might be worth getting in touch, for fresh ideas if nothing else. I truly hope you get the support you need.

@saraclara the special needs school hes at has shut due to coronvirus they thought they may have a hub but they haven't now and been told to shut

@see hi thank you I'm based in Scotland not sure if applies

Is the hubs not up and running yet ? Is his school in your council areaif it is phone education department on monday ask about provision.

What about an enclosed AstroTurf area in the garden? Not easy to magic up at the moment although many garden centres are delivering. Or again ask for help on Facebook explain situation / anyone getting rid of xxxx ? Things can be bought or given away with social distancing.

People are falling over themselves to help others with the whole Corona situation, I think you could get something sorted to make it a bit easier.

Hi OP not read the entire thread. I have two SEN boys and also a governor at a SEN school but England. I have a feeling all the SEN schools will have to reopen to some degree.

Long story but both of mine are in private SEN schools paid for by LA. Both do residential placements so if the worse happens I might beg for a week or two in residential.

Right now we have no SW, no respite, I cant home ed as got 4 school age kids. It's just a long holiday but my son with ASD is getting very distressed

Oh my heart goes out to you, I’m a SEN teacher with a class of severely autistic non verbal children some with PICA. In Scotland too.

Last week we were asked to identify our most vulnerable children to go to the hub, I chose some for respite for the parents the parents are awesome but they need a break.

Message his CT or HT on Monday and explain the situation they should be able to help you.

There isn't the provision though @saraclara my son is also at a special school with an EHCP it closed last week ,I think there maybe some provision for children of key workers and " vulnerable cildren" although I'm not sure how they decide which children are more vulnerable as all the children by the nature of their disabilities are vulnerable,we might hear some more after the Easter holidays ,tbh,it's such a,difficult decision even if I was offered a lace for him ,I don't no wether I would want I accept it due to risk.

I'm so sorry to hear that provision isn't available for many of you. I assumed that all special schools were operating in the same way as the two I know.

I spent much of my career as a class teacher for non-verbal severely learning disabled children, and I'm only too aware of how extraordinarily difficult your situation is. My heart goes out to you.

I think provision is very ad hoc. My dc’s special school have only offered a morning or afternoon session at a different venue an hour’s drive from me (dc difficult in the car) and a parent has to stay for the whole session. Also with the proviso that this is only if the child cannot be cared for safely at home. The travel alone would be so stressful for us that it would not be worth it.

@WhatAMum01 it’s called a disabled facilities grant and it comes from the government. We rang social services who sent us an OT out to asses and he has applied for everything for us. I’ve just seen your in Scotland so I’m not sure it’s the same but it’s worth looking into as I’m sure it would be a big help. My son also floods our bathroom and it is now coming through our living room ceiling so the grant is covering a wet room for us.
Our son also puts everything in his mouth non food it’s so hard never being able to take your eyes off them for a second school really is the only break. My sons school is closed but they have been checking in on families and they have had a deep clean this week I think there looking to do what other posters have mentioned and looking at taking some children back in. I really hope your sons school can do something similar. There has to be something available for children with SEN it’s not safe for anyone to carry on as you are

It doesn,t happen quickly though User , we had an OT out because my.fencing was very low and couldn't let my son out in the Garden as he would just climb over ,he also tried getting out of the Windows , i live in a housing association home ,the OT recommended window locks which we got in a few weeks and six foot fencing which took nearly 12 months ,admittedly the housing association did drag their feet , ,I think the problem is that a lot.of services will be working remotely at the moment ,my sons learning disabilities nurse phoned last week to say they won't be doing any face to face visits for the foreseeable future ,which is understandable .

How are you doing today WhataMum01?

@whataMum01 I think they would still be more than happy to help with some advice, at the very least it's someone IRL you can vent to and realise you aren't alone.

I've emailed his school and begged them for help.today has been plain awful.im run into the ground,hes not sat still for a single second and is currently crashing about upstairs for the hundredth time,I've got mini locks on all the rooms but hes crashed through them and the frames are now destroyed.its no life this.coronavirus has ruined my already fragile existence.

Does he sleep.? I'm very lucky that my son does sleep albeit with me but that's a whole different issue as bad as it can get I know he generally sleeps well ,he might calm a bit as he gets older ,ds is nearly 10 now he used to be so destructive pulling doors off and throwing things down the stairs ,tbh he's not half as bad as he used to be ,well compared to how he was

@x2boys he sleeps badly, will take ages to unwind but has melatonin which helps then wakes 5 nights out of 7 at 2am and is up till next day or sleeps an hour between.he sleeps with me too.

My son used to.do with that in nursery and reception he would go to sleep.but then wake up.and be awake for hrs,melatonin did nothing for him but thankfully after a coup!e of years he did seem to grow out of it so maybe your boy will?.He still won't sleep.without me but at least we get sleep ,I'm not diminishing it I get how hard it is my son in now nearly ten non verbal at a special school ,I'm trying to get him out of nappies but sleep wise and behaviour wise it has improved .

Holidays are hard anyway and now we have this never ending time at home which is really hard for families like ours ,what.I'm trying to say is that in a year or two, I know that seems like forever it might calm down ,I remember when my son was about 6 or 7 in the long summer holidays I was in tears every day he was biting and scratching ,constantly my sister actually commented on my arms as she thought I had excma it was that bad but after a,lot of work with both schoo! And myself he rarely does that now ,again I do know how hard it is.

@x2boys your son sounds so similar to mine, before this coronvirus changed things I was dreading the Easter and summer holidays, now I'm just dreading every day. Dont get me wrong hes loving,but just over and above hard work that's constant and never ending.he too scratches and pinches my arms no end and also grabs clumps of my already pathetic hair!he wont come when called, just doesn't understand so I end up carrying him an awful lot.he screeches and vocally stims all day long,when hes at school I always feel like theres something wrong and I realise it's that it's not noisy and I can hear myself think.im always on the edge and snappy through lack of sleep and bitterness at our situation. I've lost my faith in God and lost so many relationships as I haven't had any support from people I thought were mine and who loved me. I hate the person his Autism has made me.

I know Autism can be awful.sometimes and nobody acknowledges that ,I'm not saying things are brilliant now far from it but they are a bit better my boy is a bit older maybe age helps a bit but I do get it pm.me if you want you need all the support you can get live can be hard I hope you get the support you need .

How are you today @WhatAMum01? I have 3 DC, youngest non verbal, severe LD. It's hard enough at the best of times to hold on but this corona virus and the support drying up is going to tip a lot of people over the edge.

I just wanted you to know you're not alone, I hope this thread will carry on and give people a chance to vent a bit if nothing else.

Sending all parents with SEN children the most enormous hug right now xxx

@JustSplendid I'm ok,my anxiety is through the roof,I'm talking myself down every half hour from a great height of fear.im sorry you are going through this too.i wish rishi sunak is made aware of the plight of people like us.im not the right person to try to garner awareness.