Autistic toddler - sleep (and other) advice?

[ahna68]

Hi all,

First post here after much scrolling of threads new and old, especially since starting out on the ASD journey. Oldest DD (2.5 years) is autistic (not yet formally diagnosed, but as good as by various doctors and specialists. We live abroad so a different system to UK). She is getting good help via specialist nursery in conjunction with 'mainstream' as well as trying ABA therapy - both specialist help sources mostly with the intention of helping communication which is extremely limited - no meaningful speech (lots of babbling) and difficult to connect / get her out of her bubble. It was not always this way, but she had a regression around 20 months.

Anyway, we are taking the autism each day as it comes, trying not to look too far ahead right now and grateful we have now got through various waiting lists to have some specialist help. But we are really, really struggling with the poor sleep. Since she learned to climb out of her cot about 2 months ago, we removed the bars to avoid the danger of climbing. We found this didn't stop her climbing, she now climbs on the radiator, onto the window ledge, etc. We have tried putting her in a sleeping bag again which helps to some extent but it's probably a matter of time before she finds ways around that. We have consistent evening routine , bathtime storytime etc., and put her down to sleep around 7/715pm, but she will just not settle to sleep until usually 10pm or later. Often is then up again, wide awake, 2am-4am playing, singing, banging around. We feel the need to watch her (through the camera) when she's awake because of her climbing and even though we have tried our best to make her room empty of furniture and safe, there is still a window ledge which worries me (windows are locked, but still worries me). When she was in a cot, she would usually take 1.5-2 hours to settle for sleep, but she would just be singing to herself, doing headstands, etc., always safely in the cot. Now, it goes on much longer and we find we just spend the whole evening checking on her and can't relax at all. I am also concerned that she is just not getting anywhere near enough sleep for a 2 year old. We have tried to reduce her lunchtime nap (from 2 hours, to about 45 minutes) but she resists waking from this and I don't think we could manage to drop it entirely yet.

Anyone with similar experiences? I know melatonin could be something to explore, but she seems so young to be taking something. I also don't want to do that just to make my (and DH)'s sleep / evenings easier, although I am concerned about her lack of rest. Our second DD is 1.5 and still wakes at 5am most days, so overall just really struggling with this, combined with full time jobs.

Thanks for listening!

Melatonin is generally considered safe, it’s a naturally occurring hormone, some people, especially ND people, just don’t produce enough.

Has DD had an OT assessment? Something like a safespace bed may help.

Hi, I would look at something to keep her safely contained, either a 'cot tent' / 'crib tent' to use with a cot..

www.amazon.co.uk/Baby-Cot-Safety-Pop-Tent/dp/B075DLL489?tag=mumsnetforu03-21

Or perhaps when a bit older…

SafeSpace bed as mentioned above, or there’s a 'Safe Place Bed' that goes over a bed... www.safeplacebedseu.com/product-page/safe-place-bed-grey

Hi, reading your post was like reading my own words. I’m in such a similar situation. My little DS is almost 2 we are on a wait list for him to accessed which is around 20 weeks at the moment. He is currently on a trial of melatonin, we are 2 weeks in and the only thing that I would say it’s worked for is getting him to sleep easier. Usually this could take 2 hours now it’s more like 45 minutes, for the first week he cried so much it scared me as I felt like it was him having a side effect. However the start of the second week that’s stopped. He is still waking in the night most nights from 2-5 hours. Which has a huge impact on my mental health and I worry so much it’s slowing down down his development. He also doesn’t speak but makes sounds but no actual words, he does headstands in his cot, running up and down, spinning, no concentration for one toy, only his favourite tv show which I really limit him on as I do worry tv can have an impact but it’s so hard when you’re so tired to not let him watch it. He is also biting, pinching and scratching out of frustration. We’ve also tried changing his naps that doesn’t seem to work. I’ve contacted a charity who are willing to help but again another waitlist. They spoke about the ABA therapy.

We had quite a traumatic birth so feels like it’s been a bit of a journey and shuts so desperate to have some consistency in our lives for everyone’s sake.

I just wondered nearly a year on from your post how has your journey been? Is there hope x

I’ve been there too. See if you can get melatonin prescribed. Slynytol is slow release tablets they are tiny. Like a grain of rice. Chsnged our lives. Still has the odd bad sleep but it’s not every single night x

@Pebbles000 i am sorry to hear you are having such a tough time.

it has been a tough year, but I guess interesting to read back post and reflect on what has changed.

so the sleep remains a huge issue. Melatonin didn’t help us -
only the getting to sleep but nights were worse if anything. She does have an enclosed bed now so that helps from a climbing / safety perspective. But about 75% of nights she’s awake 1-4 or 2-5, usually including an hour long meltdown.

still mostly non speaking except for some random bits like nursery rhymes or stuff from peppa pig - typically babbling that we don’t understand. On that though I think screentime can help develop language so don’t beat yourself up about that. Maybe look at meaningfulspeech on Instagram if you are on and some other accounts for tips on gestalt language processing too. So far I haven’t seen progesss as such but I understand so much more a year on

we read Hanen More than Words and did a parents course on it - it was helpful to build interaction I think. She often seeks us out now even if what she wants is unclear. And more pushing eg to kitchen if hungry - small steps but it is communication of sorts

she is now 5 days in SEN pre school which I think is best for her. But for sure it’s been a bit of a journey coming to terms w that during the last year - viewing SEN and mainstream in parallel bc of waitlists etc. I
found that hard.

she’s more tolerant of her sister than she was, which is nice. No playing or anything but can be in the same space

re though is their hope - I’ve also heard lots from others a similar age who did have bigger progress than we’ve seen so you may well too.

for me the more I learn that helps - sensory profile type stuff. But most days I still feel I don’t understand her at all. I try to just enjoy the good moments but I am still finding it so hard tbh. Sleep makes everything worse

do you have support? Is DC in daycare at all?

There is a website called cubbybeds.com it has a bed mafe specifically for kids with special needs.it has many safety features just go to the website and you'll see