I have 2 other kids, who I was always very strict with about having a routine, I tried to put the same measures into place with Max, haha how naive I was, but in truth he's never learnt how to fall asleep on his own he still falls asleep on my lap downstairs (he's always needed a lot of physical reassurance, children with Max's condition can have poor physical awareness, they struggle to feel where they are in world...their body awareness is just completely different from our own and this can be scary) and I carry him up but I spent hours (nights) settling him back to sleep in his own bed, For those of you thinking I could have tried harder to help him to self soothe and find sleep on his own...if left on his own in his bed Max would very quickly become terrified, his startle reflex would go into over drive so it almost looked as though he was having a sezieure and he would cry so hard he would go blue and throw up, not being able to move yourself off of your back when throwing up has the disadvantage of choking on your own vomit. There have obviously been very few terrifying occasions when I haven't woken quickly enough and he's become this upset and literally found myself spending my nights listening to him in the end.
I've tried baby monitors, white noise, leaving a radio on low, cuddly toys, hot water bottles, dummies, weighted blankets, reflux cushions, special lights, pitch black, sleep forms (which is something designed for disabled people that can't position themselves.) These all helped to an extent, we tried putting him in the same room as his sister (she just ended up being disturbed) we spent years all of us being disturbed, me up and down, (sometimes 17 times a night) it got so bad that I can remember crying through sheer exhaustion, my husband ending up sleeping on the sofa as there was no room in our bed. but actually in the end there was in there was no way of it continuing, so we contraversiolly bought a bed we can all fit into. I'm not going to say it solved ALL our problems, I still have the odd sleepless night if Max is particularly struggling but all in all we are sleeping better, he does still wake regularly and I still have to reposition him/ stroke his nose when he's sensory seeking, but he settles much quicker when he knows we are there, and I can sleep because I'm not on constant Max watch waiting for him to wake up (in the end we actually found ourselves worrying when he WASN'T waking up...but that's what sleep deprivation does to you.) and my husband can sleep in his own bed! This obviously isn't something that can go on forever, at the moment it's fine as Max is only 3 but we'll need to find some way of him sleeping solo soon. I just never wanted that to be drugs. The Dr has suggested a sleep diary so the disability nurses can offer some advice but after so long with no sleep I have to admit I'm struggling to fill the bloody thing in.
We have found there ARE certain times Max sleeps better! Contraversiolly when it's HOT!!! Because his muscle tone is much looser in the heat, so he's not as stiff, his limbs go sort of floppy (well floppy for him) I call him my spaghetti man. Also the fan helps, I've not worked out yet whether it's the noise or the air, he sleeps when he unwell (we usually see this as an indicator he is coming down with something along with changes in his muscle tone and feeding abilities.) The best Max has ever slept is in a caravan when we are on holiday! We don't know why? All I know is I need a caravan! Haha!
https://www.facebook.com/The-secret-world-of-Max-189087951519961/
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