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.

Well done for getting this far, it sounds really tough!

Contact IPSEA and get some advice from them regarding the EHCP. If you can afford to it's worth getting private OT/SLT/EP assessments done. IPSEA should be able to recommend good professionals for you. These reports can then be used as evidence for the EHCP. If your twins have a need (help with sleep) and the thing that meets that need is special equipment, medication, support for them and you, then it will be written into the plan and will be legally binding. IPSEA can advise you of your legal rights throughout the process as most local authorities will provide misinformation to put you off!

Get a social care assessment too - I'd look at all avenues.

Good luck, hope you manage to get some rest today!

Hi OP haven’t read all the suggestions but just wanted to tell you things that have helped my ASD child fall asleep quicker (was taking hours and getting up frequently) and stay in bed:
Compression blanket (the stretchy bed sock thing)
White noise playing on Alexa or having a fan on
A diffuser, I put a few drops of a sleep aromatherapy blend in and turn it on about 10mins before bedtime so it’s in the air ready.
This is an odd one, a mirror! Our OT recommended it to help him learn to dress himself but since putting an over door hanging one on the back of his door he seemed happier as it faces his bed so I don’t know if it’s providing some reassurance.
I really hope you find something that helps x

Oh dear god. DH has just taken them to the park by himself. He’s never taken them out on his own and I have no idea why he’s decided to take them out now - I think he just wants to give me a break which I so appreciate but shit... I never take them out on my own these days because it’s carnage. He pointed out I’ve never been in this house by myself - we’ve lived here over two years, which is a good point.

Ive made him promise to use to the buggy and he has their reins, it should be fine... but blimey I’m nervous. Trying to resist the temptation to clean because the house is a dump but I’m going to take more painkillers and go back to bed.

It’s so quiet 😳

I looked into private OT reports for the EHCP but can’t get it done in time. Portage reckon there’s enough in the reports we have. Fingers crossed that’s the case, but if we have to appeal anything then I will get them done then.

Will try compression blankets and see how that goes.

Will contact IPSEA as well.

Op I have no idea if these work or are any good but it might be worth a shot...
www.learningspaceuk.co.uk/sensory-specialised-equipment-c12033/calming-items-c12037/fidgetbum-stretchy-bed-cover-encourages-children-to-stay-in-bed-p9551
Or what about gro to bed... At least the sheets and protector would be secured to the mattress
www.gro-store.com//many-moons-gro-to-bed.html?gclid=EAIaIQobChMI5JLo877h5AIVBPlRCh1nXgrkEAQYASABEgLJ7vD_BwE

Just read all 5 pages, especially your comments! I feel for you! And dont worry, im not going to call you superwoman or anything, that does my nut in when i feel im barley managing to hold everything together and people are acting like Im amazing!
My DH builds beds and sensory equipment for our kids, because theyre rediculously expensive!! Hes completely self taught DIY. But his first thought was to get a big sheet of wood and screw it over the slats under the mattress. Then if they try and jump on the slats, they are jumping on a reinforced sheet of wood, less noise, and no risk of little feet falling through. Plus relatively cheap.
I dont know what DIY skills you and you DH have, but seeing if you can make something you want to buy is the only way we are getting through.

Also, nhs OTs are rubbish :(! We have just had a sensory assessment done through a private OT, and they do lots of stuff. Id be tempted to at least get one out to tell you what can be done, so you know what to apply for funding for.

As a small other note. Dont ever think your complaining or moaning! Dont fall into that trap! I dont like to complain or ask for help, because when its written down it doesnt sound as bad as it actually is, or people just call me superwoman "/! I read everyone of your posts and didnt think you were moaning at all xxx

DH just called and the park is closed to vehicles... first bloody time he’s taken them out on his own and he can’t get into the park. You couldn’t make it up 😂

He’s parked up nearby, I really hope they behave... shit.

Right, I’m back in bed and going to try and sleep and not dream about them one launching himself off the climbing frame, while the other eats a dessicated dog poo (yes, that has happened).

I agree that loose straps would be a hazard, I'd make two thick fabric straps which clip together in the middle using the sort of plastic clip used on bike helmets, then sew half a strap directly onto the bottom of the mattress on each end so you can clip the mattress directly into the bed frame and the clips would be far enough under that only a long adult arm could reach them.

I haven't really got anything to add that would be helpful except to say that you are awesome and doing something that sounds so so hard. Have a

If they sleep better when the other is making noise maybe try a noise machine or music all night also I would try to have mattresses on the floor as your going to need to do that soon anyway because of their size, as for the danger of the window maybe you should get a quote from a joiner to build something up around the window,it shouldn't be that expensive especially when it means peace of mind better sleep and way cheeper than special beds.

As for the nappies I would say something to your doctor and they may be able to prescribe you something better and more absorbent (I used to do care work and all the people I cared for were prescribed various pads for their needs).

I really feel for you. Hope you get it sorted soon.

God, that all sounds so tough and you sound like you’re doing amazingly well. Hope you’re managing to get some rest.

I don’t have any experience of this but I saw that link for that safespace bed and wondered if it would be possible to do something slightly similar for cheaper. How are you (or dh) at DIY?

I’m thinking the IKEA kura beds, boarded up on the sides with a safety gate somehow attached to the end. Put the tent over the top. I would probably even see if the mattress could be laid straight on the ground on the inside of it.

for you.

There have been loads of suggestions already I know, but I’m case you are still mulling over, could you sew some straps to the bottom of the mattress? Short thick straps that you can then put around individual slats under the bed (admittedly you’d have to be reaching under the bed yourself to do that).

A charity called Newlife may be able to fund the specialist bed(s) - it's certainly worth a look. They also provide emergency loan equipment.
Some local authorities will fund them too, via an OT assessment.
I hope this helps

I have just the one horror severely ASD/LD son, I cannot imagine how life would be with two. Here are a few of the things that have worked for us:

Wooden trellis over the bottom half of the window, flush with walls/sill, to prevent climbing up. It's hooked in such a way that we (or a firefighter) could lift if off but son cannot. That said, an adult can break it pretty easily.

Toddler bed when he was small, so that he was very low to the ground. He learnt to put himself to bed when he was ready to sleep, and we learnt to trust him to do that. Some nights he has long sleep, some nights he only has a couple of hours. Who knows why or what his brain is processing.

Locks on all upstairs doors, including his - his is lockable from the outside, no key on inside.

Panels and padding on the wall and the inside of the door. We did this cheaply with foam panels and wipe-clean fabric from Dunelm.

Limited toys in the bedroom. We're currently going through a phase of allowing toys, but I'll bag them all up at 9pm and take them out of the room to leave him with just 2 plus one soft toy. Boredom results in sleep.

Routine, routine and more routine. He's had a fixed bedtime throughout, from that point he's in his room alone. We monitor. We'll go up if he shows distress. But other than that, no interaction.

Not sure how we'll successfully adapt all this when he eventually wants to toilet-train! The fact he is in nappies really helps.

Where we are toy can self refer to the social services OT. I know you are in the middle of the EHCP but if you have a SS OT and home adaotations then they need to be included in the EHCP too so I would suggest that now is the time to do it.

We had a safe bed for our son - OT helped us find the right sort (not the same as you would need) but they didnt fund. However they knew of places we could apply to for funding and put in a bid.

Otherwise maybe you could apply via social care for overnight carers

My DS ( adult) uses continence pads ( nappies). I supplement them by adding pads inside either one or two depending on thickness I sometimes use two nappies if I know I can't access a changing spaces toilet. I buy the Morrisons own brand pads.

would ones like these beds here work? x

Thanks so much everyone you’ve been so kind to me. Honestly this is just our normal, don’t know why different - of course it’s brutal sometimes but it’s not as bad as it could be. We will be okay :)

Spoken to DH, we are definitely going to get the play pen panels and make them an enclosure. What we do need to do is find a bed base that’s as close to the floor as possible - I know the mattresses shouldn’t be on the floor but don’t want a normal bed they could use to climb out of the divided off area.

Will sort out the OT side of things this week.

The charity remap www.remap.org.uk/ makes bespoke things for those in need.

Perhaps they could help with a bespoke bed.

How about a futon frame? Low to the floor

Hi op. Sorry you are having such a hard time.

I used to be a paediatric OT until recently; in my experience safe spaces and their slightly cheaper competitor creative care are rarely funded by social services in the first instance, we tend to try to support to make the room safe first so:
-box in the fireplace and radiator with bespoke radiator covers, we used to get them made by a local joiner so that they had a sloped top to reduce climbing.
-if thats not enough then we'd recommend the widow sil was sloped or secondary glazing fitted to remove the ledge. Advantage of secondary glazing is you can have a blackout blind in the gap which the child can't access.

• initially a pet gate on the door but then a stable style door. You'd need to discuss the restraint issues related to both of these with your local services as policies vary.
• other furniture screwed to the wall & locked or ideally use a big fitted wardrobe with internal drawers ect so it can all be hidden away easily.
• flush fitting lights

-mattress on the floor.

Its not a quick magic answer and is really only designed for you to be able to leave the child awake and safe in their room rather than to aid their seep unfortunately.

Where i work most of this would be done by the ASC nurse, with input form OT for only more complex adaptations which require DFG funding, but local pathways vary massively x

Get a single waterproof sheet (not the fabric type) put it over the mattress pull it through to underneath , the staple it down.

@SinkGirl
Some brilliant and achievable advice for the OP. Love it.

You need a safety sleeper. They aren’t cheap but they are the cheapest style of safety bed out there. They are amazing though and very safe and the mattress can not be got at. They are also zipped in which gives you peace of mind and you won’t have to sit there watching the monitor. We had similar issues with our daughter and the safety sleeper is amazing. The pictures I have are of my daughters. You can get them in other colours. Blue, white, purple. Even double bed versions.

Forgot to add, the ones that I’ve seen posted at 5k show how much cheaper the safety sleeper is (still bloody expensive but once you use one the expense makes sense, the bed is fantastic) the safety sleeper is 3k.