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.

This sounds so hard, I hope you're able to get some useful support. You must be on your knees, but could you get some footage of just how active they are in the night? I think it's easy to be dismissed as toddlers night waking, but if you can bring home just how extreme it is, that might help getting a melatonin trial. I'd show the nurse & HV, they may be able to support that.

DS1 has ASD, he never climbed out of his cot and was over 3 when he went in a bed. Tried at 2.5 but he hated iy. It took him a while to get out of bed, to begin with he just laid there waiting for us to get him when he'd woken up. DS3 also has ASD and was up and over at about a year!

See, that’s such a simple idea which should be obvious - I think the last three years have melted my brain! Right, single duvet covers coming up!

weighted blankets?..hypnosis(you can get free ones online,not a clue if need check out wi gp\health advisor first? maybe colour change(dim lit/low watt)lighting)I'm almost sure we had a bed tent/room..maybe ikea?sleep deprivation is really hard going.hope you find what you need

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

This^^

Don't you dare put yourself down, OP!

I'm sorry I don't have anything helpful to add, but it sounds like you're doing a great job. And I'm sure that things will get better, one way or another.

I have twins (now 13). When they were toddlers somebody told us about tall stairgates tha joined together to form a 'pen'.

I can't remember where we got them from, but this meant we could leave them to play safely in the lounge area (we put foam interlocking squares on the floor) if we were in the kitchen etc.

I wonder if you could try something like that for each of them with the mattress on the floor?

Good luck. Toddler twins are hard even before you put autism in the mix.

They seem to be easily available now. Think we had a couple of these

www.argos.co.uk/product/6691815?gclsrc=aw.ds&&cmpid=GS001&_$ja=tsid:59156|acid:444-797-0832|cid:189942085|agid:18091972765|tid:pla-336528885007|crid:77627772805|nw:g|rnd:17449531529685472374|dvc:m|adp:1o7|mt:|loc:1007136&gclid=CjwKCAjw8ZHsBRA6EiwA7hw_sdA9T86hecs0zGvOngurk1yRWb3_1_ZB45Rw-GBxkehTFi3Z21eqdhoCvOoQAvD_BwE

Velcro? Stick one side to the slats and on side to the mattress. We use nappies with Velcro so it goes through the wash fine. Needs to be enough that will stop the toddlers pulling it up but not so much it stops you from being able to.

Or similar vein. A magnetic insert into the bottom of the mattress (inside the sheet) that you remove when washing. Then stick very powerful magnets to the bed frame. We have some tiny and very strong magnets for our fridge that are a struggle to remove.

I know not every child is the same but I have a 4 year old that is non verbal autistic. At that age I was having the same problems was nearing 3 years of no sleep and he would use his cot as a massive noisy play toy all night 😩🙈 I looked up speacial cots but like urself found them overly pricey. I have since put him in a toddlers bed with sides and I think the extra room has made him have abit more restful nights sleep. Also if your sons are really awful at sleeping can you speak to your consultant and find out about getting melatonin prescribed.
Also have u heard of the weighted blankets for children with severe sensory issues. I got one of amazon for my son(they are about 30pnds tho) and the added pressure over him at night definitely helps him feel safe and secure.
Also you are doing a great job it's so hard raising a kid with autism.
Hope some of this helped and good luck xx

My friend just put the mattresses straight on the floor and had a room lock to keep them safe. You can get mattresses with which are waterproof so save the mattress protector issues

@sinkgirl if you don’t have any single duvet covers, PM me, I have a couple of spares in my airing cupboard you can have. Perfectly usable, just ‘young’ designs (think pirates and pandas) that my dc have outgrown. You sound like a real woman - handling a tricky situation with common sense, love, and determination - and I admire you.

My dd wasn't like that, girls do tend to present differently but we had the fully waterproof until recently (she's an adult now) I'm lucky that she was bribable and loved books, but we did the floor until she was 10, removed book shelves due to climbing and had to move her out of her cot at 16 months because she climbed out. We had a door lock

Apologies if someone has already suggested this, but could you have 2 mattresses? That way if they lift one up at least there won’t be the novelty of jumping on slats?

This is the play pen we had
www.tekplas.co.uk/product/childrens-playpens/baby-playpen-with-gate/

You can set it up as a U shape or in a straight line with supports. Just had a look and they make taller ones so I think with next months DLA I’m going to buy some and see what we can do with that. It will be much taller than their cot so they shouldn’t be able to climb out. That will give us some time to sort out something more longterm.

OP I have two DS 5 and 3 who are both autistic and the 3 year old is non verbal. It is so tough!

Would really recommend looking into melatonin. We have had it for 2 months now with 3 year old and it has made a massive difference.

Don't know if this is possible for you but we find having them in separate rooms is much easier.

Get in touch with an occupational therapist through social care and ask for a safe space for the twins room. There will be no slats the twins will be safe and whilst you might not necessarily be able to sleep you will be able to stay in bed and watch them. In the meantime take the mattresses and place them on the floor as there is less chance of them getting hurt. Put two stair gates on the door so that you can contain them in their room. I'm also parent to two with autsim of the non sleeping variety.

Sorry missed the link out www.safespaces.co.uk/safespace They make the whole room safe for your children.

You can buy rolls of strong velcro?

You can get charity funding for safe spaces and/or high sided beds. Newlife, Cerebra, Boparan Trust, Beckham charity, Wipe away those tears and local lions/rotary will all fund beds.

Also Newlife have an emergency bed loan service and can have a bed out to you in 24-48 hours. They have various high sided cots/safespaces for loan. I've used the emergency bed service for my own DS before when we needed a bed in a hurry and didn't have time to wait for fundraising/the NHS to get moving.

Forgot to say I also have 2 dog gates at his door- the top one is on upside down and the bottom one up the right way. He's fond of night time wandering.

These will be ongoing issues for you on one form or another so could your HV refer you for some specialist home support to figure out some solutions?

Yes to melatonin. Do everything you can to get it. (DS has adhd and never slept until he had it, I have DTs too and used to have to put on them backwards so they wouldn’t take them off ;-)

I know you probably won’t want to but melatonin yourself but just so you know - the gummies are usually available on Amazon - and most countries sell it in pharmacies or health food stores - so it’s legal for anyone going to the EU or IS and Canada to bring you some back (it’s cheap)

I have nothing useful to offer but just wanted to say that you sound like a fantastic mum and I can’t believe how little support there is for parents in your circumstances. I really hope you get something sorted out soon to make your life a bit easier

A bit left field but if they aren't good with zips: have you considered a pop up tent each on the floor with a mattress inside?
They do get condensation so pick a double skin one and air well each morning. We have quechuas for camping which have a mesh door option, so it isn't like a prison, but is quite womb-like. I just thought it may be soothing, and may encourage them to snuggle down.

Definitely look into charity help. That's what they exist for.

Have you tried melatonin ?