Neighbour's autistic son, sleep deprivation and health/housing impacts.

[Anonymousaurus]

I am in a desperate situation and would be grateful for any advice anyone may have. I think I've included everything but please feel free to ask if I've missed any details. Sorry it's ended up so long, there wasn't really a brief way to give full context.

I live in a mid-terrace house which I privately rent, my two children (10 and 12) are with me 50% of the time and we have lived here almost 5 years. Last August, a lady bought the house next door and moved in with her autistic son. I would guess he is around 8, but it's hard to tell as he is still in nappies. He is non-verbal and I believe also visually impaired. He makes loud, vocal stimming noises almost constantly whenever he is awake.

For context as I know I'll be asked, I know he is autistic because shortly after they moved in, while I was out for the day, someone came into my garden and added an extension panel to the top of my fence. When I came back home and went outside, the child's grandmother came out to the end of my garden and told me they'd had to do that and affix it from my side of the fence because her grandson is autistic and he climbs things.

The issue I am having is that the child wakes frequently almost every night, and very often for several hours right through til morning. I am woken almost every single night by extremely loud banging which I believe to be his bedframe slamming into the wall when he jumps on the bed. This also sends vibrations through my floor so I can hear and feel it. He also bangs on the window (I have seen this from my garden), rattles the door (I think he is locked in overnight for safety) drags things across the wall, bangs toys into the window and shrieks and cries. It goes on for hours. I very rarely hear anyone go into his room to settle him, but whether they do or not makes no difference to the noise.

I have tried various types of earplugs, white noise machine, having a fan in my room, opening the window and nothing even remotely dampens the noise. Using ear plugs only puts me at risk of missing my alarm and not getting my children to school on time, it certainly does not help me sleep.

Often after a bad night I finally drift off to sleep, only to be woken again shortly after by very loud banging any time from before 6am and this continues usually until well after 9am. Obviously this only applies to weekends and school holidays, during term time I have had to drive my children to school (20 mins away) on no sleep whatsoever on many occasions. I'm very worried about having an accident.

The very bad nights where he is awake anywhere from between midnight and 2am until my alarm goes off are around once a week on average, though sometimes there are clusters of nights like that one after the other. He also takes several hours to go to sleep each evening, with loud banging, crying and shrieking beginning at around 6pm and usually not stopping until after 9pm. I have to delay putting my own children to bed until about 20 minutes after the noise has stopped in case we wake him and it starts all over again. I am woken up by banging at least once pretty much every night, but the anxiety I experience around going to bed is now so severe that I often can't sleep for hours even if he makes little to no noise after he has gone to sleep.

I have tried sleeping in my lounge but as our bedrooms and the lounge are on the adjoining wall, all of the noise he makes travels up or down wherever he is and it is basically just as loud down there. It sounds as though he is inside the walls in my house during the day. When he plays in his room, there is scratching, tapping and banging along with vocal stimming which seems to go on all day. He goes into the garden when it isn't raining but the vocal stimming seems to be even louder when he is out there and he also throws stones and knocks them on the fence which is also noisy. I get absolutely no peace unless I put music or white noise on, but this has to be so loud to drown him out that it's not really relaxing.

On top of this, the boy's mother has a partner who got himself a Rottweiler puppy at the start of this year. He obviously cannot have the dog with him while he works, and so he drops the dog off at my neighbour's house in the mornings, usually when I am leaving to drive my children to school and the neighbour is putting the child into the taxi to go to school. The dog barks a great deal throughout the day, especially when he is left on his own which seems to happen at least once a day for various lengths of time, and it isn't collected until around 5-6pm. This means I cannot catch up on sleep during the day.

I have lupus which is a chronic autoimmune condition which causes inflammation, chronic fatigue, pain in my muscles and joints and many other symptoms. Inflammation is triggered primarily by illness, lack of sleep and stress. I went off sick from my job because the sleep deprivation was so bad I could not function, and was enevtually sacked at the start of this year because I could not provide a satisfactory answer when asked when I thought my health would improve, because the neighbours aren't going anywhere. I am now at risk of eviction as I have defaulted on my rent.

I have tried all available avenues to get support and advice but it seems I have absolutely no rights in this situation. My landlady isn't responsible for the noise which I do understand, so she won't consider soundproofing as it would cost her money and reduce the value of the property, she also won't negotiate my rent. As the noise is coming from a disabled child as opposed to 'nuisance noise' the police aren't interested. My landlady advised me to report my neighbour to the council, which would require me to take recordings over a period of time and submit them for review, after which the council may send a noise abatement order to the property. I am skeptical that this would achieve any meaningful resolution as the neighbour is already aware how this is impacting me and I highly doubt anything can be done to stop the child from doing what he is doing. The mother smokes weed during the day, I can smell it before I've even opened my car door when I get back from the school run and it's seeping through the wall into my kitchen at the back of the house, and it seems she is able to sleep through or ignore the noise for hours. I believe the child is being locked in his room and ignored throughout the night most of the time, but the police and social services don't seem to think this is a problem.

I had to contact social services on a couple of occasions during the summer. On one occasion I could hear the mother screaming and swearing at the child to shut up for a sustained period of time from around 3-4am. This was during the very hot period when everyone's windows were open at night and I expect everyone in my terrace heard. Later that week, after being kept awake all night, I went to get my cat in from the garden at 7am and saw the child had removed his nappy and was standing on the windowsill fully naked slamming on the glass and shrieking out of the top window. Behind the row of terrace houses where I live is a public thoroughfare which many people use to access the high street and train station, so a lot of people could have seen him as he wasn't let out of his room for a further 2 or more hours as is normal on non-school days.

A couple of nights ago I called the police at 2.30am because the banging and crying was far louder and more persistent than I'd ever heard before. They attended the property, knocked on the door but my neighbour didn't answer, so they left. The noise continued for several more hours. At 4am I spoke to the officer who had attended the property and he told me that unless they are aware that someone is definitely at risk of death, they aren't authorised to break down the door or even knock more aggressively. As they couldn't hear the noise from the front of the property (his bedroom is at the back of the house) they left and would not come back. I explained that the screaming and banging had been going on for over 2 hours and I was concerned it was far louder than ever before but was told that doesn't constitute an emergency. The following day the boy still appeared to be in his bedroom all the way through to the evening. I called 101 to report that I believed the child had been locked in his room since the previous evening but they weren't really interested.

I am at my wits end and have been contemplating taking my own life. I have PTSD from highly traumatic birth injury when my daughter was born, and when I am woken in the night by the loud banging, my nervous system reacts as if someone is breaking into my home. I have started experiencing chest pains during the night for the past 3 months and I have frequent panic attacks during the day because I get absolutely no break from the noise whether it's the child or the dog. I have posted polite requests through the neighbour's door twice, the first time asking if she could possibly move her son's bed away from the wall, and the second time requesting that she ask her partner to make alternative arrangements for his dog during the day if he is unable to take it to work with him, but neither of these have been responded to even though I provided my number and no action has been taken to change anything as far as I can tell. The noise has actually gotten worse.

My parents are my guarantors and since I defaulted on my rent they have been required to pay this for me. They are now pressuring me to give notice to my landlady so that they can get out of this contract, but I have nowhere else to go because without being able to get my health back on track, I cannot return to work.

Moving in with my parents is not an option for me because I would be nowhere near my children and I do not have a good relationship with them. We are essentially estranged and moving in with them would almost certainly see my already very fragile mental health declining even further very quickly. They agreed to be my guarantors five years ago as I was financially stable and this sort of situation just didn't even cross our minds. We have barely seen each other since then.

For the first time in my life I am receiving universal credit and am currently applying for PIP under the advice of several people I've spoken to at the DWP. I had never previously considered that I might be eligible for PIP nor had I even wanted to investigate this as I had been managing very well as a single parent working full-time from home until this family moved in. I feel incredibly guilty to be receiving benefits of any kind but unfortunately the impact of the sleep deprivation that this child has caused has been profound and I see absolutely no way of improving the situation while I'm still living in this house. I cannot leave the house to go to another private rental because my parents will not agree to be my guarantors again, which I can perfectly understand but it does sting as I did nothing irresponsible to get myself into this situation. I cannot afford to live anywhere else in this area anyway now that I am relying solely on UC, and so the only private rentals I would be able to find would likely be one bedroom flats or studios.

I have looked into how I might get myself on the social housing list but it seems that the only way to do this while privately renting is to be at risk of eviction. Since I have a guarantor, I don't think that my landlady is going to go down the eviction route, as legally she can continue to demand that my parents pay the rent for me and they are obliged to do so, otherwise she can take them to court.

I know the child is disabled, but I am now a burden on the state when I never needed to be, and there seems to be absolutely no route to a way out of this situation for me, that can't be right surely? Am I missing something? I do understand that his mum's life must be very difficult indeed, but she does not seem to be intervening when he is waking during the night at all for whatever reason, or even trying to stop him from banging things into the wall. I do not understand the rationale of moving into a mid-terraced house and not even giving the new neighbours a courtesy knock on the door to explain what they are going to be in for. I have tried so hard to be patient and understanding, it took me more than 6 months to raise any kind of complaint with my landlady or the neighbour because I wanted to be compassionate to their situation and give time for the child to settle, but the sleep deprivation has gotten worse and worse as time has gone on and nothing is being done about it, this is simply not sustainable.

Does anyone have any advice at all, for any part of my situation or the whole thing? I am honestly at breaking point and not very far away at all from harming myself.

And the OP has a right to a place to live.’this disruptive child’s needs and those of his seeming waster of a mother do not trump the OP’s.

It's actually outstanding that some people think a parent of an 8 year old who likely hasn't slept in 8 years and is clearly severely disabled might not have heard of melatonin.

Or that a child with such a severe disability would be likely capable of taking a tablet.

They are extremely small tablets, like a mm. Like a grain of cous cous size. It doesn’t sound like you’ve tried them. I’d be getting on the blower to the doctor asap. They are not the same as the other tablets.

And no, I don’t think we can presume anything. Not all mums have the same access to prescription melatonin or ability to negotiate services. It’s a fair enough suggestion and one I hope the OP considers mentioning if she gets the chance (I also hope she tries some proper earplugs).

Oh for crying out loud. This is getting derailed but I am going to respond one more time to clarify:

Many severely disabled children take melatonin tablets. The extended release melatonin tablet is very, very small. The extended release melatonin is also not widely available and lots of people haven’t heard of it. It is prescribed privately, and also on the nhs but only to those that have tried the other melatonin or/and have pushed for it, and not all trusts will prescribe it.

Sick of you and the other poster acting like I don’t know what I’m talking about when I CLEARLY do.

Anyway, if this post helps at least one parents realise the existence of this drug on the NHS and its lifechanging capabilities then my work is done.

And it still doesnt work for eveeyone .

Yep.

No matter how small it is.

It doesn’t work for everyone, but for those it does work for, it can be life-changing, and it sounds like for this mum and her neighbour it would be worth a fucking try.

It has been life changing for me. To any parent of an autistic child who is reading this - there might be hope. Don’t be defeatist before trying

Yes. I’m aware of that thank you, on the basis of having a consultant paediatrician. Because I have a severely disabled child.

I do not require an explainer on types of melatonin, how they’re administered, or their size. I have a doctor for that, who does tell me
the information you’re giving.

I also know the same child found his ADHD meds and then refused to eat because he didn’t trust food once we’d hidden meds in it. And spat a bean across my kitchen today because it was slightly the wrong texture.

I also know that our paediatrician won’t allow us to even try tablets unless we stop our liquid prescription, because she can’t half prescribe either and we’re not allowed both simultaneously.

As much as the fast release has many, many flaws and isn’t especially effective, I do value the 3hrs sleep he occasionally gets from it and don’t fancy risking him throwing a yoghurt across my house because it’s got a weird bit in, and then staying up all night because I fancied a gamble with the minimal sleep we get.

I absolutely acknowledge OPs need and right to get some sleep, and don’t think her neighbour is right on many counts.

But if my neighbour knocked on my door and started asking whether I’d heard of melatonin, I think I’d shut it in her face in absolute disbelief.

what specific point are you trying to make?

Is it that because it doesn’t work for everyone there’s no point trying it?

if so, what rubbish.

if not, what is it?

Unbelievable isn’t it.

Like asking someone with shit eyesight if they’ve heard of fucking glasses.

Honestly I despair 😂

Agreed aa the parent of a,severely autistic 16 year old its patronising to suggest parents might not of heard of melatonin.

Can’f you try the extended release tablets while you still have some liquid left? That is how our consultant did it.

You seem annoyed at me, but the fact is you haven’t tried it, so at the moment I technically have more experience of this drug than you do. So maybe I am worth listening to?

I’m going to stop posting now, because this is extremely fatiguing, but we have gone from many hours of wakefulness (with banging) to sleeping through, so I feel my contribution to the thread has been useful.

OP, sorry for derailing. Melatonin aside, try getting some custom earplugs. Night all.

Agreed.

I’m due an eye test soon, might try the butcher.

Perhaps the milkman will do my flu jab.

Not melatonin, a specific type of melatonin that not everyone can access.

I give up. I actually give up with this website.

But that parents of nonsleeping children likely will have.

We’ve got specialists coming out of our eyeballs, and doctors who give us the information you’re sharing.

I think it’s only right to think that a mother of an 8 year old with profound needs has a similar litany of specialists as the rest of us.

I well believe it’s a potential wonder drug. We can’t use it. We’ve been offered it.

I’m giving the OPs neighbour the good grace of knowing her son and whether he can access certain medication, and trusting that she has the same access to many doctors as I do, because she’s his mother.

I also think it’s worth noting that most SENd parents, while accepting their kids do cause a nuisance to others; don’t want medication advice from relative strangers knocking their door and would prefer it from their assortment of trained specialists. In one of the many appointments they have!

Might be worth sitting in it for some hours at night - can it be worse than the bedroom?

Exactly.

If a random neighbour knocked on my door trying to offer medical advice about my disabled child or any of his medication or potential medication, I'd be baffled and likely remind them that my son has two consultants plus many, many other medical professionals involved in his care.

"And the OP has a right to a place to live.’this disruptive child’s needs and those of his seeming waster of a mother do not trump the OP’s."

Yes she does - and she has one.

As it stands, this is now being paid for by her "estranged" parents who want her to move back in and understandably they do not now want to act as guarantors going forward.

OP has allowed the situation to deteriorate and now that she has lost her job can now only move with council support. We all know this can result in rooms in hostels etc

Hi OP, I am so sorry you are going through this and I can absolutely hear your dispair . Unless you have lived next to nightmare neighbours who come alive at night you have no idea what it is like. I have had it for 3 years . My NDN and I are both housing association. It’s a new build and I was placed here after horrific domestic violence & previous council property been so vandalised by my ex. I was so grateful upon moving here the area and other neighbours (mostly privately owned) are wonderful. Unfortunately a family moved next door woman claiming to be single parent , immediately moved her partner and 19 yr old son. I won’t bore you with all the noise complaints and abuse I’ve received but ultimately there are running a food business from the house - housing association confirmed it had permission & then retracted it & said it can’t tell me what permissions due to GDPR. Anyway, the noise is constant banging through the night doors slamming, food pick ups etc etc .
beleive me when I say I’ve tried everything. A year ago it got so bad I attempted to take my life . I am now about to reach the final stage of the ombudsman so tiny bit of light and I am planning to move . I literally can’t take it anymore.
what I would suggest in your position:

1. report straight away to the council
2. engage with your local mp / local councillor
3. 3 or more reports to your council within 6 months and you can have a trigger meeting - this should involve council , landlord, police SS - especially as this is a safeguarding issue
4. whist waiting for the council install the noise app - they won’t do a THING without evidence - please get it

there is no easy solution- the only thing that has got me through is my daughter and the fact that the rain has to stopped eventually after every storm - nothing lasts forever good luck and feel free to PM me - oh I ve also had cancer twice whist this has been going on - you have to be your own advocate and raise your health in this x

Yes OP, it is horrifying to me that you have let this situ rock your life security like this. You’ve obviously worked hard to get to where you are as a single parent, and people want to see you secure (I.e. your estranged parents helping you with guaranteeing).

I understand the neighbours moving in was not your choice, but how you’ve dealt with it was. It seems like you’re falling under it and have the loosest excuses for remaining in it, with little proactivity to find a solution.
It reads like you want to be passively be made homeless and get a council flat.

Benefits are there to help people in extreme circumstances, and it reads like you’re trying to let this develop into one. Overall, your reason for getting a council house and benefits is because a noisy SN child moved in beside you.

You’re not going to be any better off on benefits. It can be very hard to get back out of it. I really do wish you well OP - I hope you get back up and want better for yourself and family. I think it’s an awful pity that this has gone the way it has.

She really doesn’t want to be on benefits. Read the thread properly.

Well done for getting through this. It’s remarkable how selfish some folk can be.

I’m reading it like OP would prefer to find somewhere else to live, and her parents pay at least a portion of her rent until she’s back on her feet.

A lot of the move seems to hinge on her parents acting as guarantor, and she has said that her housing element doesn’t cover her full rent, so I’m assuming the rest would come from parents.

I’m all for benefits for people who need them, and parents helping out where they can, even when their struggling children are adults, but in truth as a fully grown adult and mother, I couldn’t have that expectation or comfortably rely on others as the ongoing “plan.”

OP seems to be in a real tough spot mentally, and I think that’s making her feel unable to stand on her own two feet or take any proactive steps without relying on others.

I honestly think that’s what needs to change, particularly because her parents sound like they’re actually limiting support, before anything else can change.

Oh I don’t really know the process. What does she do though as surely it’s not fair on her parents to pay her rent indefinitely and the landlord won’t evict her all the while they get paid.