Child waking and screaming all night- help needed

[AnotherexhaustedSENmum]

I have a son who is frequently awake at night, but vocally stims very loudly all night. He shouts at the top of his lungs, so it is very extreme. He has probable ID, and ASD and ADHD.

He is already on melatonin and a fairly high dose for his age (5) but this isnt alway effective. We can just about cope with sleep issues, but now he screams all night nobody in the house gets any sleep whatsoever and I think it is starting to affect my neighbours too. We rent, so could easily lose our home over this.

Has anyone else had this issue? It is utterly ruining our lives, because he is extremely loud in the day and I'm slowly being driven to what feels like a breakdown over this, and not being able to find any peace. I just want to leave and not come back, but this would be unfair on my OH who is very supportive.

We just need services to do their bloody job. The whole system seems to point to a parent giving up work to cope and being severely financially impacted. Services don't really help at all and I feel I am being pushed to crisis before I get any substantial help that isn't signposting somewhere else that also doesn't help.

We havent been offered any medication for this behaviour - consultant paediatrician is very nice, but is very reluctant and want to explore behavioural methods first, but my son likely has SLD as well as autism and he doesn't understand any of this despite our best efforts.

We have not been offered respite and had a SW for a couple of weeks who mainly suggested I work shifts (we both work 9-5 and cant do this) or to get family members to look after him which are elderly and can't keep up with him. It was then decided they couldn't offer us anything.

I just feel utterly let down. My son's behaviour is destroying everything and the system is just laughably shit quite frankly. None of it is joined up or holistic, and everyone works in silos and refers you in between services to get rid of you.

Sorry for the rant, but I'm at my wits end. I hate what this has done to my family.

Is there anything that stops him vocal stimming during the day. Is there any times he isn’t stimming such as watching tv or eating?
my son wakes in the night and will sing/moan and chat to himself quite loudly till he falls back asleep it is loud enough to wake me up if I am in another room.
the only thing we have managed is to co sleep and to tell him to be quiet and stroke his hand to calm him but this doesn’t always work and we have to redirect him to bite a towel or a teddy my son has a learning disability and autism
aswell so has no understanding or concept he is being loud

If melatonin isn’t always effective I would request to try something else either instead of melatonin or as well as. There are several different medications you could try that are used to aid sleep. If the current paed won’t prescribe I request a referral to a sleep clinic.

Similarly, if DS has ADHD (sorry, I wasn’t sure whether he has a diagnosis or if ADHD is probable) and the current team won’t prescribe ADHD medication, I would request a referral elsewhere.

For the daytime noise, have you got noise cancelling headphones?

Has DS had an OT assessment?

Is DS anxious at the moment?

Complain about the social care assessments. They can offer support, but won’t do so unless forced, I’m afraid. If you are in England presumably DS has an EHCP, if you appeal the educational side of that, you can also request the social care sections are looked at.

Thanks for the replies.

He has an EHCP and we have been through the tribunal process to appeal section I, so he will be going to a special school in September. We weren't really informed what the social care bit was and the council made out it was about adaptions to the home more than anything, do didnt realise this was a route to respite care. We did have a SW and she was nice, but not very helpful. It was just wasting my time, or so it felt. If I had known we needed one to access respite care I'd have kept her, but she didn't warn me of this, or indicate it was a possibility.

My son vocal stims much of the day and I really can't get any peace whilst he is home and it's hell at night time if he wakes. I've just had to keep pushing him away from me as he was trying to repeatedly bite me. He's just so full on.

What other medication options are there for sleep? My son attended a SEN play session and I realised just how bad he is with being hyper and difficult to control compared to the other kids. I couldn't leave his side. He does appear much more disabled than the other children as he doesn't understand anything. I think this is why I feel so angry and exhausted because I don't feel heard at all in terms of how severe my son's autism is. After today I do feel that he at least something for his hyperactivity. I am loathe to try antipsychotics and my partner even more so. I used to work with people taking these meds and there were meds dished out that were more PRN based and calming, but my son is only 5 and not sure what other people have got at that age. My consultant is always very reluctant as I have asked already.

Request social care assessments again either now if you will be in the same LA or when you move if you are moving area. On their website, Contact has model letters you can use. The LA lied to you. The social care sections of the EHCP aren’t only about home adaptations. If you appeal the EHCP again in the future you can request social care assessments are looked at too.

Has DS had SALT and OT assessments? And does he have ongoing therapy?

If you haven’t already tried them, I really would try noise cancelling headphones.

There are lots of other medications that can be tried for sleep. Often the next one to tried is Promethazine either as well as melatonin or instead, but there are many others ranging from the fairly simple such as Alimemazine to more hardcore such as chloral hydrate.

DS1 started risperidone at 6. It hasn’t been a miracle cure, but has helped and has been worth it. He also has Lorazepam for crises. We have tried numerous meds to aid sleep. Currently DS1 takes immediate release and prolonged release melatonin. On bad nights he also takes Temazepam.

Thank you for your response. Are you in the UK? I haven't been offered anything other than melatonin. It struck me today just how hyper my son was. He is little but fast and charged about the place. I was sweating trying to follow him. He just runs and runs. He is very hyposensitive and gets very little interoceptive feedback. I think he does need something to calm him down sometimes.im not sure where it comes from as he is non verbal.

He does have some SLT and OT now, but it has taken a year and council conceding their tribunal to get it. I think they realised that he will be going to specialist soon as they couldn't fight the tribunal and were a bit embarrassed about lack of input. My son's mainstream has been great, but the difference between him and other kids is night and day.

I do put on ear phones at home but feel guilty about it and it doesn't stop the neighbours hearing him.

How did you access the medication options? I fear like most things with SEN you only get it if you are in crisis and I want to avoid that. I can cope with everything else, but just need something for the night waking and screaming.

Can I request social care assessment again before an annual review or do I have to wait for one? I'm still getting my head around the legal stuff.

You don’t have to wait for the AR to request social care assessments, and the LA shouldn’t wait until the AR before providing social care support.

We are in England. DS1 doesn’t have ASD. He has other complex needs which in some ways present similar to autism, but I know those with ASD have been offered other meds. We accessed meds via CAMHS. The local tier 3 CAMHS were as much use as a chocolate teapot but DS was referred on then on again and the specialist teams were/are much better. We were in crisis. DS1 was on the verge of having an inpatient admission. Only avoided due to his age and complicating medical factors limiting the beds he could be admitted to meant we managed with him attending a CAMHS unit as a day patient.

Your DS sounds dysregulated. Hopefully once DS is receiving OT in special school things will start to improve. Do you have sensory toys/equipment at home? Some find a trampoline helpful. We have lots of sensory equipment and a mini indoor trampoline as well as a bigger one outside and they are used daily to help DSs (I also have DS3 with ASD and DS2 with ADHD and suspected ASD) regulate.

Im up again at 4am this morning. He is on his ipad and reasonably quiet playing sensory games, so i need to make sure its charged in future as we haven't got much left.

We have quite a few things already - weighted vest, weighted snake, trampoline and a chair which spins, trays with beads in, that sort of thing. He loves a good chew, so lots of chewing toys too. I'm not sure if his behaviour yesterday is anxiety or excitement. It's very hard to tell with him. He seemed to be having fun and when I tried to calm him or lead him somewhere else he'd drop his weight.

I have referred myself to a CAMHS team for children with ID, but I'm more at the stage of seeing what they provide and if the referral is needed. I have also requested my GP refer me to CAMHS but I've heard nothing from them.

Thanks for your post about the medication. It's really helpful to see what other people are using. I don't know any other parents in this position, so we are navigating this alone and having to trust professionals instead.

Not sure what type of social worker you saw previously but you will need one that specifically deals with children with disabilities. I think sometimes respite can be hard to access until a child is around 8 as they assume a parent would be doing everything for a NT child at a younger age anyway. Your local council website should have details for the ‘children with disabilities’ team, short break scheme and direct payment scheme which you may want to look at.
With regard to melatonin we found that a MUCH smaller dose than prescribed worked better for our child. The dose had been increased to 6ml I think but I’d read something somewhere about smaller doses being better and we dropped down to around 0.5ml which does the job for us.
I’d definitely start trying to keep a diary for sleep (if you get referred to a sleep clinic they will tell you to do this anyway). Make a note of what you’ve done during the day, food, emotions etc and also try and keep to the same bedtime routine if you can. If you’re lucky you may see a pattern emerge which will help you.
Lastly, I will say that when our child was younger it was not unusual for them to be awake for several hours a night every night being very loud but they do seem to have grown out of the worst of it.

@AnotherexhaustedSENmum DS (8) takes alimemazine which is prescribed by his consultant paed. We had to lay it on thick, I told her we were on the verge of divorce/ breakdown/ our own MH collapse if we didn’t have something in addition to melatonin. Refer to alimemazine, say you know about it, put the paed on the spot as to why you can’t trial a low dose, say not even every night, just on a really bad night? Certainly with all that our paed struggled to say she wouldn’t prescribe (I think I added I had done my own online research and was ready to order some random stuff online if she couldn’t prescribe 🙄). Good luck. Alimemazine isn’t infallible but it’s helped us a lot.

Hi @AnotherexhaustedSENmum - I just wanted to ask if your ds behaviour has improved at all? I am in a very similar space at the moment with my almost 4 yo