DS (3) and his mattress - WTF do I do?

[SinkGirl]

I have twins, both autistic, no understanding of words, non verbal. They are absolute experts at depriving me of sleep, however. We have a video monitor and watch them constantly until they’re asleep - they’re still in cots currently as it would be dangerous for them to be awake and free to climb etc when we are asleep (before the inevitable noise wakes us up). They like to be awake for at least two hours in the middle of the night for no apparent reason, and generally it takes 2.5 hours for them to go to sleep anyway.

They are particular fans of removing their sheets and mattress protectors (which is a problem as DT2 has a medical issue that means he drinks up to 3L per day and soaks through despite at least 3 changes overnight).

Anyway, tonight he has discovered he can lift up his mattress, stand it on its end and then jump up and down on the slats (which makes an unbearable noise). I am not exaggerating when I say I’ve been in to replace the mattress 25+ times in the last 2.5 hours. I’m exhausted. He’s exhausted.

I can’t tell him not to do it - well, I am telling him not to do it, but he doesn’t understand. I can’t strap the mattress down with something because if he got that loose it would be dangerous.

Aside from spending 3 hours a night returning the mattress every 5 minutes, does anyone have any suggestions? I’d love to say the novelty will wear off, but that’s not how he works!

I can’t just bring him in with me as neither of them will ever lie down in our bed, let alone sleep.

Superglue?

Gaffer tape? Not being flippant, but something like that would be strong, waterproof and secure.
Can you put a zipped cover on the mattress?

On the removing mattress covers and protectors you can get ones that zip on from one end that would be harder to remove.

Have you tried distraction, could they have something in their cot to play with that might distract from this behaviour?

I feel for you- sleep deprivation is a form of torture

Can you child proof the room to have mattresses on the floor? I think you can get sealed waterproof ones (for use in hostels).

I would strap it down. You could get something that goes over the mattress across the bottom of the side panels and underneath. As long as it was secured well I wouldn’t say that was dangerous.

Can you remove the cot and leave him with just the mattress? Or what about a travel cot instead?

You know those straps you can buy to put round a suitcase? Could you use a few of them to strap it down?

Take the bed frame away. Mattress on the floor.

You must be able to get a full water proof mattress like the ones they have in hospitals? They are foam inside and zip round the outside but the zip is quite concealed.

Would a travel cot work because it’s deeper.

Sounds like torture

I think I’d probably take everything else they could hurt themselves on out of their rooms and go for mattresses on the floor with a high gate on the door or something.
I’m so sorry, you must be on your knees. Do you have any support?

I have a non verbal adult autistic nephew.
When he was younger that had to take his bed away because of almost the same thing.
He would move his bed into the corner of the room and then turn the mattress on its side on top of the bed and jam it into the corner and stand on it so that he could get to the top of the window to try to escape out of it !

As of tomorrow, I'd be inclined to dismantle the beds and have mattresses on the floor. You have 3yr old twins which is super hard, before you add in the autism. They are not likely to understand (or care) about rewards, consequences, threats, bribes etc and you need to sleep - the only alternative would be sitting in with them every night, which is unlikely to be a quick fix. If they would understand a simple social story you could try that, but quite frankly, your mental health is more important than bed frames and you need to know they are safe and you can sleep. If they break the slats/frames they are unusable anyway, so remove the trigger.

My eldest DC used to climb out of his cot at 18months so I removed everything from his room put mattress on the floor with a child gate at the door. This was on advice of health visitor. It kept him safe (didn't help with the sleep side of things though!)

DH and I are trying to figure out a way to make the room completely safe if we took the cots away but I just don’t see how. There’s a fireplace built in, a very chunky radiator under the window and even if we boxed that in they’d climb that and get up to the window sill. The window has a lock so they couldn’t get out... but it would be absolute mayhem. If they could get out of bed I don’t think they would sleep at all.

Their cots are as deep as travel cots but sooner or later they’re going to start climbing out and then we are fucked. I’ve looked at options for disabled kids but funnily enough don’t have £10k+ to chuck at two beds!

Going to order some zip over mattress covers tomorrow. Will see if I can find sheets that can’t be pulled off too.

I thought about those straps for cases etc but worry he could get it off and it would be a hazard.

I think he’s finally stopped... for now at least.

Found these fully waterproof mattresses which look pretty good www.amazon.co.uk/JAY-BE-Waterproof-Anti-Microbial-Mattress-Hypoallergenic/dp/B07BXXMFYN?tag=mumsnetforu03-21

Have also heard of some people putting incontinence pads inside nappies for extra leakage or purposely putting the nappy on backwards or doubling up.

Hoping you get some sleep soon

OP I'm really feel for you.
Are they both in same room.
Do you have extra room to put one In each room.
Take cot out and put a playpen type fence around the mattress.
I hope you have support to share the no sleep with.

And no, they don’t understand social stories, nor can I do anything to bribe them - and our presence in the room only makes things worse so I stay in here and watch them on the monitor and then just go in when they’re upset or need something doing.

Agh. I had so hoped this would be the sort of age where twins would get a bit easier - potty training, normal beds, having each other for company. But no, they have no relationship with each other at all, still changing about 15 nappies a day between them, still spoon feeding, brushing teeth, etc.

We have a bit of help - homestart volunteer once a week. We are doing EHCPs at the moment but once that’s done I need to follow up on pushing for an assessment from social care to see if they can help with any equipment, respite care etc. We don’t have any family around so it’s pretty brutal at the moment. They do at least go to nursery 3 mornings a week but I’m so exhausted that all I do is lie in a daze and get nothing achieved.

OP I don't have personal experience, but I know you can get special beds for children with autism, things like this www.safespaces.co.uk/

DS has a John Lewis mattress which is waterproof on one side, it’s been brilliant since he started trying to be dry at night (also ASD, 8yo).
Have you tried melatonin yet? DS uses two kinds, both have to be prescribed by his consultant, standard melatonin which helps him settle, and which is the slow release version to help him stay asleep. PM me if you want more info.

Do you think you could put a stair gate across the window? I remember we had that when I was a kid - our windows then weren’t lockable and an utter death trap, so they put up a wooden barred ‘screen’ across the bottom half.
Radiator cover if you’re worried about head bumps from falls.

Sympathies OP, when DS1 was 3 he was deep in night terrors and sleep was rare for us all. It genuinely has got better over time.

Ask for assessment from social care now. You don't have to have EHCP to have an assessment. Get some supporting letters from nursery about their behaviour and be prepared to push and fight social care for as much as you can get.

My only suggestion re the beds was a playpen, sorry!

What support are you getting? Do you have an ot? Physio? You are entitled to a disabled facilities grant to make your hone suitable for your boys. My friends daughters room is totally padded like a soft play centre. Safe, attractive and easy to clean. She likes to sleep in stretchy tube.
Do you have any support services? Respite? There are many things that are available it’s just knowing where to look. Which local authority are you under?

Sadly we don’t have another room. I’d happily have one in with us but they will not settle. They do ignore each other completely though and weirdly they each sleep better when the other one is awake and making a racket!

We had a great (tall) playpen but DT1 became expert at getting out of it. He’s like a gymnast-ninja. Weirdly he’s never even tried to climb over stairgates and if he walks by one and it’s open he closes it 🤷‍♀️ they wear sleeping bags in bed which prevents climbing out of the cot for now at least.

Unfortunately those mattresses are too big for the cot beds but will see if I can find slightly smaller ones. They look great. Or will get some when we finally get rid of the cots... I thought maybe I could put some kind of roof on the cot, then realised that’s a cage... not ideal.

I think I’m just feeling defeated by it all today and didn’t need this new problem! We got a report about DT2 which classifies his as being developmentally the same as an 0-11 month old in 60% of areas, and an 8-20 month old in the other 40%. He’s 36 months now. It’s just bloody soul destroying and never ending. Now this.

Anyway I think he’s asleep! Only 3.5 hours to get to sleep... hopefully it means he won’t be waking up at 1am for hours but he’ll probably be up for the day at 4 at least so I better get some sleep.

Weighted blankets? If they are too 'busy' they may benefit from grounding and a good weighted blanket may be worth trying, if you haven't already.

I'd put a large mattress on their floor and sleep together. Your current set-up is unsafe. The video monitor isn't enough - it won't wake you if they're awake and quiet. You need to be present to keep a proper eye out.

Also, how are you dealing with wet sheets in the middle of the night? Are they having to wake up and shout you? Our autistic children were 7 and 10 before they were able to sleep happily and safely alone. We could tell when they needed a wee by the way they wriggled, and whipped their nappy off the second they'd finished to make sure they didn't wake up properly. There's no chance they'd have slept for 5 mins in a wet nappy, and once they're awake, they're AWAKE.

OP I don't have personal experience, but I know you can get special beds for children with autism, things like this www.safespaces.co.uk/

I saw these and I love them - but they’re about £5k. I mean, I’m sure they are awesome but they are basically a fancy tent. Sigh.

We are jumping through the hoops required to get melatonin. Been seeing a paediatric nurse who confirms we are doing all we can, and has just asked that we try a shorter nap (they still need one, but I’ve cut it down and it’s made no difference). They want to get to the bottom of the drinking / weeing issue first as they think that’s not helping. Meanwhile she and the HV have done an early help assessment and I’m waiting for the write up of that which I’m hoping I can use to push for some social care help.

I’m also really hoping that they’ll get specialist school placements via the EHCP as that validates a lot.

We don’t have an OT - we’ve tried with the ones at the hospital, they’ve said they can’t do anything about their sensory needs and to buy more chew toys 🙄 I guess what we need is an OT attached to social care to maybe get some adaptations to their room, help funding special beds.

But at the moment I’m in the midst of the EHCP stuff and trying to focus on that. Also managing health issues myself and trying to manage a part time job that I think I’ll have to quit. Sigh.

Ugh. I really should be sleeping.