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.

I'm amazed they'll say in cots. Both of mine are autistic, one had physical delays and both had become unsafe in a cot by their second birthday.

Given their behaviour and I expect they'll be firing off each other, which won't help, they need mattresses on the floor (you can get waterproof ones) and a safety gate - a dog gate with removable cable ties if they can climb baby gates. No other furniture or clutter in the bedroom. My 13yo's clothes are still kept elsewhere because he either chucks everythign on his floor or just wears everythingg for an hour and gets it filthy.

No advice, just a post to say I've read your previous posts before as well as this one and think you're an absolute marvel!

They won’t sleep in a room with us. We’ve tried, many times, they just don’t sleep. They are able to ignore the presence of the other but not us. They can’t get out of their room even if they could get out of their cots and we would definitely hear that - monitor is on loud, I wake up if they sneeze. Being awake and quiet is not their forte, which I suppose is a blessing!

So so far tonight DT2 has had 4 bottles of water and 4 nappy changes - I change him every time he has a drink. This is usually enough to prevent the leaking - if he wakes in the night I change him again. Sometimes he will still leak through and wake up wet but we do as many changes as we can when he’s awake.

That sounds incredibly tough OP. Sleep deprivation is torturous. Just to echo a previous poster about melatonin. DS2 was prescribed melatonin as a younger child & it was a godsend.
I hope you get some restful sleep tonight.

If the worst comes to the worst, there is your bedroom. Either you move into a reception room or one of you sleep in each of their rooms. It will be easier if they're separate.

There's over 2 years between ours and once they were 5 and 7, we could send DS2 to bed, then send DS1 once he was asleep. Before then, we'd put one to bed, and one on our bed and move them once they were both settled. And yes, it did often require one of us to sit with one of them. (Heck, we still do need to have one of us between them a decade on. That's life, sadly!)

Hope you get some sleep. Definately zip up mattress covers, or even make one from a bigger sheet. What about velcro loops attached to the bottom of the sheet that you can then strap round the slats? Or some sort of removable soft edge that holds the mattress down?
Have you got a sensory light? I have a fish tube thingy for my daughter, it's full of water and plastic fish and fills with bubbles and lights up/changes colour. It's was only about £20 in the garden centre, works a treat. I think the white noise it makes also helps. Also weighted blankets are meant to be really good, not that I have one, but might be worth looking into.
As for child proofing get furniture straps for all furniture, so it's secure to a wall, get the rubber edge stuff on anything and everything, locks on all draws and cupboards, and maybe somehow have mattresses sunk into a low frame when they are older?
Hope that some of that may help or give you new ideas.
Good luck, you are doing a great job 💐

Get assessed by Social services children with disabilities and OT and apply for safe space beds for each one
You can apply for grants viz charities like Caaddwell cerebra etc

I'll leave the much more knowledgeable people for advice on your twins but can you just decide that their nursery time is your nap time and work on boosting your own sleep bank? Give up on trying to achieve anything - your one and only thing on the To Do list is sleep??

With everything you are dealing with, I think that should be your top priority and then anything that follows after / on top is a bonus.

They’re not physically delayed by much at all, if anything - but they don’t climb out of their cots, just as they don’t climb stairgates. They climb furniture all day long. Maybe it just hasn’t occurred to them, I don’t know.

It’s not even the climbing I’m worried about, it’s the fact that they will not willingly lie down and sleep if they can just walk away from their beds... I don’t know how we will manage and I think we are going to have to get specialist deep cots or somehow fund a safespace type thing.

We need a plan but right at this second I can’t even think about it without panicking.

Apply for DLA and then look at somewhere like the Family Fund for some financial help.

Right. Sorting out an assessment to see if we can qualify for funding for a safe space thingy is on my list... their room is small though, they may have to share one of the bigger ones while they are small.

We are planning to move in a couple of years, when we know where they’ll be at school in case it’s not close by.

Thanks everyone for being so nice. I’m just worn down and my brain doesn’t work any more!

We do get DLA for them both (MRC) but I may do a change of circumstances and see if DT2 can get HRC - his sleep problems are more documented now. Will get the EHCP sorted first.

Have you thought about crowd funding? People do it for their honeymoon these days! I think this is a much more worthy cause! Perhaps your local children's centre or any specialist groups may be able to help? I really hope you get some support. I think your amazing, I hope you get some time for yourself, sleep deprivation gets to the best of us eventually, get some help before you burn out, you must be exhausted! If you were local I'd sit up and watch the monitor for you one night so you could get a full night sleep xx

If you get in touch with safe space they can provide you with a list of charities who may help you fund a safe space. I’ve helped with applications through a charity called new life in the past

You’re doing a great job under a lot of pressure.

Not much to add but do look at options for financial support. It sounds like cracking sleep for you all would make a huge difference. There’s some great suggestions here:
www.disability-grants.org/grants-for-autism.html

www.ambitiousaboutautism.org.uk/understanding-autism/life-at-home/financial-assistance

My sister was in a similar position to you and the OP advised (( and fitted )) locks to her doors. So SS certified so to speak. She has locks on every door in her house. It's the best way to keep her children safe. When they didn't have beds but had a mattress on the floor again for safety. One would do repeated seat drops on his beds so even metal ones would collapse within days. They also had sloped windowsills to.prevent climbing........again fitted by their OT.

Pleased to say things are far better now, a lot of these behaviours they don't necessarily grow out of but they do calm down as they get older.

Would a basic IKEA toddler bed with one of their bed tents be any good as a cheaper alternative to a safespace bed? Sorry if that's a silly suggestion. Hope you get some sleep tonight.

Put one in your room and sleep in living room for few nights to see if it helps? No answers but good wishes. Sleep deprivation ruins your mind!

I would try the mattress inside a king sized duvet with the excess pulled through the slats and tied. So it's tied down but as safely as possible. Not really sure if it could work though.

Definitely an OT from social services could help. In our area you can phone up the council yourself and start the process - just use the general number to the council. Will either be a direct option to ask for OT or tell them you want to put two referrals in. Once you get into the system there are then lots of support systems you access, and needs can be addressed as the twins grow older

I notice the safespaces website has a section on funding options if that's any help.

For a quick quick fix, you can buy Velcro by the roll. https://www.screwfix.com/p/velcro-brand-black-heavy-duty-stick-on-tape-1-x-50mm/21670?tc=PT2&dskid=92700023138617071&gclsrc=aw.ds&dssrl=1249416&dsrl=1241687&dssrl=1245250&gclid=CjwKCAjw8ZHsBRA6EiwA7hwsQq13QZPCrqLPpXsbS19ibF3OnRSVr5SosmrxyOZLU8hr9t8t8z1kRoCqxYQAvDD_BwE

Long strips down each side of the mattress and two in the middle, perhaps a couple crosswise. Might be enough to mean he can't pull it up.

You sound amazing. As do your twins.

You also said something that interested me-you said they don't have a relationship with each other but then said they sleep best when the other is there and noisy. I'm sure you've done all the tests but how is their hearing? I also wonder if their hearing is fine whether it's too quiet for them to sleep, have you tried a loud heartbeat type sound? Also re the radiator, does it need to be there/be that big? Swapping it for a lower profile panel might help as well, underfloor heating with mattresses would probably be amazing. I hope you're able to get funding for the sensory type room up thread. This is also when I wish I was a multi millionairess who could dispatch home fix teams at the click of a mouse!

My DS didn't sleep through until 3.5 ish, and that was without all the additional complications that you are managing. Sleep deprivation is awful. Sleep when they are at nursery, do the minimum necessary and then sleep. The suggestion to use it as a sleep bank is sensible.

Could you glue some short fabric strips to the bottom of the mattress then pass some velcro loops around the slats and through the strips? You could glue the velcro to the slats too. Does that make sense? You'd have to get under the bed to release the mattress though.

I know you said that they don't sleep with yous very well, but I know from my childhood with my brother (severe autism), one of my parents ended up co-sleeping with him until he was about 6 or 7. I think it took a while for him to get used to, but he did settle eventually and it did mean that one parent was in the room to keep an eye and re-settle. Sleep eventually became easy and everyone got enough sleep which helped tremendously. I know it's a huge thing, but do you think if your partner co-slept with one and you co-slept with another things would maybe settle down in the long run?

I totally get how difficult it is. We had so many broken windows, doors, holes in walls, drawings all over the walls in the house. Ended up having to padlock every single room that wasn't the kitchen, living room and his bedroom or he'd trash them. Locks on the windows because he escaped once and ran down the road. But you will find a way. It takes so much trial and error, but you'll get there. I think the best thing you can do is try and save up some money and get the room as child-proof as possible, for your own peace of mind if anything.

Definitely try and reach out to get more support. You may be entitled to a grant to help with making their room more SEN friendly. And getting another perspective may point out something that is an easy change for you but you just didn't even think of it. It's so shit that you have to battle for literally everything, but you will get here. My mum was absolutely drained but things are okay now and he's in his early twenties. He's on a small amount of medication which helps handle his meltdowns (my poor mum was so against it for so long but had to cave in the end and it was the bravest thing she could ever do). He sleeps in his own room with regular furniture, on his own, all night. He has a routine which my parents stick to and he rarely has meltdowns anymore. School/attending an adult day centre as he does now means my mum has a break. He is happy and settled.

Things will get easier. You're doing a fantastic job. Remember, we are always here to support you. x

Do you see a paediatrician with them? Could you ask for them to have melatonin to improve their sleep?