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.

OP we bought melatonin chewies from this company before DS got his prescriptions- www.biovea.com/uk/mobile/product_detail.aspx?NAME=melatonin-gummies--strawberry-5mg-90-gummies&PID=13318&OS=202&cid=22597&deptid=1&all=false&back=searchresults

Also used to get American family to bring bottles of the chewies over, it’s sold on the shelf there.

Have you contacted SENDIASS? They give help and advice with regards to what you need and what you are legally entitled to with regards funding/assistance. Also, if you haven't already, google your local authority Local Offer, They should have lots of advice and links for support in your area.

Sending . As PPs have said, use the twins time at nursery to catch up on sleep and don't feel guilty. You need to take care of yourself to be able to care for your DCs.

That must be totally exhausting. I’m not sure if this is totally inappropriate or not, but could a play pen around mattresses on the floor be an idea? Sort of like an extended cot. If they turn the mattress over it wouldn’t matter as it would be on carpet. It would keep them safe away from any windows, fireplaces etc.

Thanks so much for alll the advice and support everyone. I’m going to do some research into options this weekend. The paeds nurse is coming back with the HV on Tuesday so I’ll ask them about this Early Help Assessment thing and whether I can use that to get an OT round for an assessment. If not I’ll make a referral.

Last night wasn’t too bad actually once they settled down.

DT2 is under multiple consultants but they’ve all been wary of melatonin. Not seeing anyone for a few months now. When we do I’m going to ask to try it - if it doesn’t help then we can just stop it. He needs more sleep than he’s getting.

Have a look at the 'safe space' bedrooms.

They aren't cheap but you can get charity funding for this sort of thing.

Look at grants at places like New life.

Sorry that sounds like I'm repeating advice.
I was just extending it to the suggestion if a particular charity.

I'm in a rush because my now 15 yo autistic ds who once slept no more than 5 hours a night in 3 shifts is off to swim training.

I once thought it would never end. I was surprised to reach the light at the end of tunnel. I hope you get there soon.

So sorry I DID NOT post the eye brow raised emoji. Well not purposely anyway.

I was just meant to send flowers.

What about a robust tent tethered somehow to the floor, with a mattress inside it?

I'm a social services OT. Definitely get an assessment from your local council. All councils are different but we assess children for safe spaces and adaptations to the property.

Im thinking cable ties, perhaps punched through the mattress. They will NOT be able to remove them.

OP I have one DC who sounds so much like yours, you are amazing for managing with two!

My DC would climb out from a cot and we couldn't make a safe space due to things in the room (radiator, built in wardrobe) so we co sleep. It's not the most ideal and I really hope in the future she can manage going in their own room but for now it means I get sleep. We have discussed melatonin but decided against it.

We use a range of other things, it's a very careful balance of doing everything exactly right which has to be adjusted every so often to make her sleep. We follow a "sensory diet" throughout the day which is sensory activities, she sleeps much better when this is right - OT can help come up with this even if they won't engage at all with OT as mine won't either but you can try different things without OT. We follow a strict evening settling down routine lasting 3 hours, make sure she does not fall asleep in the day, is up by a certain time and also doesn't go to bed too early. She doesn't need much sleep so we aim to have her falling asleep and waking up after those hours she needs, otherwise she will be up for 3-4-5 hours in the night. We also use a weighted blanket which helps her stay asleep and white noise. You might have tried all of those things but just in case you haven't I would try. I find it's a balance of multiple things that make her stay asleep but it's a very careful balance. It's not completely effective but she will only wake up twice usually whereas she used to be up pretty much all night so it has made a difference. I hope you find a solution soon.

I know a parent that had a bed made. It was very low to the floor , single mattress and was made to look like a castle.
However the castle had walls and a door which was lockable. This child benefited from an enclosed area as it calmed them. They had sensory difficulties as well and calmed in small spaces. It also kept them safe at night.

Can you give them something to help them sleep? My DD has ADHD and Autism and we use melatonin

Don’t worry, I do that all the time! 😂

Thanks everyone. I realise I sound like a right moaner on this thread - I was just at the end of my tether last night so posting here stopped me going in there yelling GO TO COCKING SLEEP, not that they would understand but my god sleep deprivation makes you nuts.

DH is going to have to hold down the fort today while I have a lie down. I’m having the most painful period (I have endometriosis and adenomyosis) and even my very very strong painkillers aren’t making a dent. DH is great during the day but he’s the world’s heaviest sleeper and just doesn’t hear when they wake up unless they’ve been crying for ages. I’m the opposite, I wake up really easily and take a while to get back to sleep, so it feels pointless waking him up when I’ll be awake anyway, even though he tells me to. It’s fine, I’ll catch up today.

I’m wondering if a playpen could work as a temporary measure until we sort something out longer term. We had an amazing one which DT1 managed to escape from but I know they do a taller version. With the other one he would stand on a toy, hook his arms over the side, lift himself up, spin around and gently lower himself down. When he was 18 months old they were in their highchairs just after lunch - I just took things into the kitchen and I heard a box of building bricks being emptied - he’d managed to climb out of the highchair and get down without making a sound and without it tipping over and was on the other side of the room. I wish he could understand more as he really needs something like toddler gymnastics!

They both have perfect hearing - I was really worried about this with DT1 because the only sound he makes is ga, and he wouldn’t respond to his name for ages. But if I rustle a rice cakes packet in the kitchen they come running 😂 DT1 had a test and it’s fine. DT2 doesn’t show any signs of having a hearing issue luckily. I think they’re just so used to the noise of the other.

We have a projector in their room with a lullaby which they love. It does generally help them settle down. Thing is they’ll be awake for hours but are generally quite happy - jumping up and down, babbling, giggling about nothing at all. It’s only recently that they’ll cry because they want us in there for a cuddle, but if we try and sit with them they won’t even lie down. Did this for two hours the other night - went in for a cuddle then sat between the cots and they were just wide awake, sat upright... eventually gave up and left and they just lay down, and shortly after went to sleep! If I thought splitting them up and each sharing a room with one of us was the answer I’d happily do it but when they see us they just want to get up and go downstairs (which I never do until at least 5am, unless they’re sick and very distressed).

They really are amazing boys. They’re generally so happy and sweet. DT1 is looking at us so much more and starting to get upset when we leave the room - he’s just learned to sign “more” which is his only way to communicate at the moment. He uses it for everything, any time he wants something... but just having a way to ask for something means he’s a lot less frustrated. DT2 has just learnt to point (with both hands it he really wants something 😂) and clap at all the right bits in Wind The Bobbin Up. All sounds very minor to most I’m sure but they’re big things to us.

Anyway, DT1 is engrossed in Baby Jake (worst kids show ever) so I need to get DT2 up (apparently now is when he wants to sleep 🙄)

I have read the thread - first of all I want to send a hug. Your poor love it sounds awfully relentless

Sorry, didn’t see the other replies. I will ask their paediatrician about melatonin when we see them next - too wary to do it myself because of DT2’s risk of endocrine issues / undiagnosed medical issues, but I think it’s time we tried it.

OT have been no help at all. Portage managed to convince them to come round and do a home assessment during a portage session due to DT2’s sensory seeking - she said absolutely nothing while she was here then told portage they can’t help us and gave her some handouts on chew toys. I think surely there must be something they can do but they said there isn’t. I’ve considered paying for a private OT, but they need private SALT really (they’ve each had four NHS sessions since we were referred 13 months ago).

I do actually think an enclosed space for a bed would be good for them but can see how that could be risky, and look very bad. At the very least I need to involve SC / OT before doing anything like that.

Aah pressed send too soon.

Seen the advice re melatonin and grants .

Definitely you need to get higher rate care component of DLA for both of them too.

Re the EHCP definitely use IPSEA to help. They are free but get booked up so start the back rolling now and they will help you ensure your LA assess correctly and that the provision recommended is suitable

On special needs kids websites I’ve seen adult sized cots designed for older children who need a safe, secure space. I imagine one of those companies would be able to offer some advice about the mattress etc. For example they sell plastic covered mattesses too.

We had different issues to yours, but had an OT who came round and made suggestions and applied for adaptations, they also loaned us a profiling hi-lo bed.
We applied to Cerebra for a grant for equipment we couldn't get funding for. If you Google you can get lists of charities that provide funding, it is a good idea to try local charities as they often move faster (I have helped families of children I work with apply for grants)
Definitely ask again about melatonin. Until ds was on it he was up until about midnight, and we had to take it in turns to take him out - either in the night or the car, as his screaming and manic behaviour would wake our other children. He now will settle (although one of us has to be there) meaning he gets more sleep (which helps him grow and develop) and we get a bit of evening. Unfortunately he does still wake every night and ends up in our bed, but hey ho!

Forgot to say we don’t have weighted blankets because they don’t like having blankets on them (they love their sleeping bags though).

Need to try one of those stretchy tube ones but not sure how they’ll react!

The OT who did the home assessments was from a different department, to the OT therapist who we saw for sensory/fine motor stuff.

There are cheaper alternatives to safe spaces - including an alternative version made by creativecare.co.uk They are much stronger than a tent and have in built fixed mattresses - some charities will find them.

There are also safety sleepers - these attach to the bed frame.

You are not a moaner, OP! You sound more like superwoman, frankly.

Thank you so much for all the help and suggestions - when I’m a bit more alert I’m going to write everything down in a list and check out each one.

I am definitely not superwoman, I am a mess! You should see the state of my house right now, it’s like a toys r us exploded.

Sorry, the OT from the hospital came to do an assessment of the boys at home rather than assess the home, if that makes sense. She’s the one who deals with all the sensory stuff.

I also need to make a referral to Vision Support Services for DT2 since nobody has ever mentioned this to us or referred us which pisses me off - it’s difficult as we can’t really assess how bad his vision is, he has under-developed optic nerves and can obviously see and is managing but I want to know if there’s anything we can do to make that easier.

Oh and I need to call SS about the chap over the road (not sure if anyone saw that thread but my elderly neighbour is in a bad way and have lost sleep worrying about him the last couple of nights too).

Lists are needed I think!

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

Had similar problem with dd with SN. I put the mattress inside a duvet cover and just folded the spare material underneath. It looked like a sheet and it wouldn't come off.