Giving up the sleep battle

[helac]

Looking for alternative solutions and advice on whether we should just give up our losing sleep battle with our non-verbal ASD son (3.5 years) and let him be awake all day and night and just sleep when he literally drops.

He has been fighting sleep since he was 1.

1. From age 1-3, it took him 2-3 hours to fall asleep.
2. From 3, he was waking up for 2-3 hours a night on top of this.
3. For the last 2 months, he has been waking up at 2am and not going back to sleep at all - which means he can't go to nursery (or they call me after a couple of hours and tell me to come and fetch him because he is too tired to be there.)
4. He does not nap in the day, unless he's in the car and if he does have a day nap, he has a meltdown on waking and will then take 4 hours to fall asleep at night.

After implementing all the sleep hygiene methods and advice, he was prescribed Melatonin by our GP and has been on it for 3 weeks. It's been amazing at getting him to sleep faster, but now he wakes up every night at 2am and doesn't go back to sleep. He is WIDE awake, doing acrobatics around his bed, stimming furiously, singing, babbling.

We stopped the Melatonin for a couple of nights, but no difference. We split the Melatonin - 3mg at bed, 2mg when he woke up at 2am, but the second dose did nothing.

I spend the night in his bed, battling to get him to stay in bed - while he kicks me, pulls my hair, shouts, tantrums when I stop him from jumping out or running out the door. I spend every night lying next to him, just waiting for him to wake up so I can attempt to calm him down before he wakes up the rest of the house.

At this point, I feel like I should just give up and be liberal - let him do what he likes - be awake, read, wander around. My husband wants us to lock his door. I hated the idea at first, as I think bedrooms should be a happy calm place, not a prison. But at this stage, I'm wondering if it's the only and safest solution. If we put a stair gate on his door, he will scream at it and wake up our other son.

I can't work, I can barely function, I'm eating badly because I'm too tired to make meals. I feel like every day I'm just going through the motions of existing. It's miserable and I can't see an end to it.

Maybe I should just accept he doesn't need as much sleep, that this is our fate, and that there is nothing we can do about it apart from hope it's a phase that will come to an end at some point.

Thanks for reading it you got this far, not really sure why I'm posting this - I'm just exhausted, venting, wondering if anyone can share stories of success, solutions or hope!

Rather than lock DS in his room, has he had a home OT assessment to look at a safespace bed or similar?

There are lots of other medications that can be tried either as well as melatonin or instead of. Go back to the GP and ask to try another one. If the GP won’t prescribe ask to be referred to paeds/CAMHS/a sleep clinic. Usually the next one to try is promethazine either as well as melatonin or instead of.

We gave up on bedtimes when DD was about 2.

She was the non-sleeping baby that turned into the non-sleeping child.

She now has an ADHD diagnosis.

We did the bedtime routine of bath, pjs and story and then she was free to do what she wanted with the rule that after 9pm was adult time and she could not be disruptive or require adult attention/participation.

So she played with her toys, did colouring, watched inappropriate TV etc and then tended to go to be around midnight when we did.

She is exactly the same now at 15. She's up for school at 6.30am and seems to be very happy on 6 hours sleep.

It made everyones life a lot calmer and was one less battle to pick. We did get a huge amount of flack from family who seemed to think we should battle it out over bedtimes - one relative tried when she was 4. After 3.5 hours of screaming they admitted defeat... DD came and did quiet colouring and we all went to bed at midnight. They never suggested anything again.

Thanks so much for your reply @BrumToTheRescue - very grateful.

We would love to start OT, but the NHS has said he is too young and we can't find a private one near us. Safespace beds look amazing, although he hates nothing more than being trapped (even hates small rooms) so I'm not sure if this would make him more upset? These things are often experiments - but that might be an expensive one if it doesn't work. We aren't going to lock his door.

I'll enquire with our GP re the other meds. We've been looking at Slenyto.

Thank you again xxx

Thanks so much @OhCrumbsWhereNow ! I've been feeling in my gut for so long now that perhaps just letting him be is best for him and the family.

So last night, we let him stay up until he stopped running around. He went to sleep at 10:30 with his melatonin , and I had such high hopes of him sleeping through. Nope! Argh! Woke at 3:30.

But we will persevere!

Thank you again - was looking for some kind of permission that the let-them-be approach is okay and I really appreciate it! Sometimes feel like I haven't a clue what I'm doing and am making a complete mess of this! Xxx

Slenyto is melatonin.

You don’t need to but a safespace bed. That’s why I suggested a home OT assessment (which differs from ongoing OT). One can be provided. There are also charities that provide grants. In the short term, you could long at Newlife’s emergency equipment grant. If you google “OT aids and adaptations equipment” and your local council, you should be able to find the number of the aids and adaptations team for a home OT assessment. This will be helpful not just for the bed, but to look at how the house can be safer more generally and better meet DS’s needs.

OT more generally can also be provided. DS is not too young. You are being lied to. You can often self refer. Not all areas commission sensory OT on the NHS now, but if your area does, that will help too. Another way to get more general OT and sensory OT is via an EHCP. If DS doesn’t already have an EHCP, you should request an EHCNA now.

@BrumToTheRescue Oh okay - thank you so much! I had no idea about any of these charities or grants. I'll look into them asap.

DS has already been granted an EHCP assessment and have said it should be granted in September, so that's a big relief for us.

Yes - but the difference I believe with Slenyto is that it's a slow releasing melatonin - the brand he's on at the moment is not, which is why we think he's falling asleep fast but waking up in the middle of the night.

Thanks again for all this information x

If the LA has agreed to assess, have you requested an OT assessment as part of the EHCNA?

Ah yes it is worth trying prolonged released melatonin. I didn’t realise you had only tried immediate release.

@BrumToTheRescue I haven't requested an OT assessment - but I def will now! 🙏🙏🙏

IPSEA has a model letter you can use to request assessments during the EHCNA. Have you requested a SALT assessment?

@BrumToTheRescue We are on the radar for SALT, but we had one AWFUL LA woman who came and was so horrible and moody with DS - snapping at him to stop 'mucking about' with the PECS cards because he was being sensory seeking with them and stroking them against his face. Then he got stressed out and ran away. Felt like telling her to leave!

We've been working with a private SALT since then, but DS is a gestalt language processor and I don't think that PECS (which seems to be what they push) is going to work with him.

We've tried a few times, and at one stage he did get it and did it well - but now he's bored of them. We are looking into AAC now, as I think he'll be far more engaged with that - he loves his word apps on his iPAD and says a few of them occasionally - not often at all, but more than he did with PECS.

Sorry - that was way more information than you probably wanted!

Was the woman from the LA a SALT assessment as part of the EHCNA? If not, you need to request the LA seek advice and information from SALT as part of the EHCNA. Notes etc. from ordinary sessions won’t be enough for an EHCP because it wouldn’t set out needs, outcome and provision in the correct way.

@BrumToTheRescue It was an NHS practitioner I think. I will ask our EHCP case worker regarding the SALT and OT assessments. She has said that our case is quite clear and that we have a lot of solid supporting information (from teachers, psychologists, our former private SALT) so I'm hopeful it will go through - fingers crossed!

Thank you again for all your help!

Hi- sorry I know it’s been ages since you initially posted, but I’m just wondering if things have settled any for you. Your situation sounds nearly identical to ours here. Our little man has just been at the paediatrician again today and we are now going to try the slow release melatonin, we had previously been using the liquid 4mg. Have you had any success?

Hi @Rhiannond93

Sorry to hear you're going through it - it's such a nightmare for everyone - parents and kids included.

So we took him off melatonin (normal release) and didn't ever try the slow release as we felt a bit burned by the experience. It was traumatic giving it to him and we think overall he became quite irritable on it. But who knows - perhaps he would have been great on the slow release!

The phase of him waking up at 2-3am lasted a long time - for about 5 months after I posted my original post.

I don't want to jinx it, but things have changed massively for us and for the last 4 months he has been sleeping really well. He goes to sleep in 15-30 mins and he generally sleeps through until 5-6. There are the odd nights where he gets up at 4, but way less than he used to.

There could be a few reasons for this:

• he's a bit older now, so maybe it was just a terrible phase and his nervous system has calmed?
• we found that putting him to bed at 9pm was the right time for him. He has iPad at 8pm then we take him up to bed at 8:45pm and it seems to be the right routine
• he is WAAAAY more active than he was back in July last year. We actually moved abroad in December and now live in a sunnier climate and he spends almost all day outside running around and swimming for hours.

Perhaps it's a combination of all the above.

I have heard great things about the slow release melatonin, so I would definitely give it a go! It might suit your boy brilliantly.

I hope this has been helpful xxx

Ah thanks so much for your response. Our boy seems to be much calmer with a night sleep under his belt, well the very odd night he manages to sleep, he is just a different guy the next day. But hopefully things will settle, we’re currently on month 10 of this so think we will try the slow release and see how it goes. He is very active all day everyday as it is so I don’t understand where he gets the energy to be honest 🤣