I have not left the house in a week. What do I do?

[DaffodilsandDelilah]

DS12 has HFA. He broke up from school a week ago so we are heading in to week 2 of the Easter break.

I also have DD7. DD7 goes to a holiday club during the week which she loves.

DS12 will not leave the house at all; we’ve been trapped inside for a week. He can’t be left alone and DH is away working. I am slowly going insane and I can not stand it any longer.

A few days ago. I planned us a day out to a lovely local community garden with a play area (for today). I told DS12 days ago that we were going, he needed fresh air and we needed to get out. He was reluctant but he understood. I’ve reminded him daily and explained we won’t be long, we’re going at a quiet time etc etc. We were only going to go for an hour even though I’ve paid for the full day.

This morning, he has refused to go. He’s had an almighty meltdown, shouted at me, refused to dress. He said it’s only me wanting to go and he wants to stay in.

He does no extra curricular. He goes to school , comes home , watches tv, goes to bed, on repeat. He won’t leave the house at weekends.

I lost the plot. I told him I hate living like this , I feel like a prisoner controlled by his whims and I can’t do it anymore.

Every weekend is the same of him and his routines and HIS need to stay at home. The sun is shining and all the DC are playing out or are on day trips out. I look out the window and just feel sad.

We are again inside. I can’t pop to the shops to break up the day because he can’t be left alone and he won’t come with me.

What do I do going forward? I’m so very annoyed right now and I can’t think rationally other than to go and make another fucking cup of tea to drink whilst staring out the same fucking window.

@lljkk

A babysitter is unlikely to work as DS becomes distressed at people coming in to his space. It would not be relaxing for all involved.

is that British understatement or can I take it literally? Would a babysitter be "not relaxing" or "a flipping nightmare I wouldn't wish on my worst enemy" ?

My gut feeling is your son does not have right to hold you hostage like this. He has to accept being out of his comfort zone. If that's merely "not relaxing" then get the babysitter in.

If it's "flipping nightmare" - you're still looking at an unsustainable situation. You will need respite care to continue to be an even half decent parent to them both.

How does DD7 get to holiday club? Do you pop out very briefly to chaperone her?

Yes try to ascertain if it’s a possibility or not. Tbh we had to stop having a cleaner as dc couldn’t tolerate it and we were having meltdowns the day before due to anxiety building so it’s really going to be something to make a judgment on it’s really difficult

Hi OP, I have a daughter who is autistic but fortunately she wants to go out all the time. It must be very hard for you.
I know it's not ideal and your son may protest but you could see if you'd be eligible for a personal assistant/companion. I work in the field and I would hazard a guess that you would be able to secure some funding for some visits. When I visit my families I work with their needs and do exactly what the person I'm assisting requires and what their parents/carers require. If that is just for me to sit in another room while the parents are out for a few hours then this is fine. I understand he may find this distressing at first but if you start very slow and work up to longer hours then it could possibly work. I would enquire with your local council for advice.
Good luck

Do you drive OP? It's not the same thing but I go through periods where I am extremely anxious about going into public spaces - my car is like a safety bubble that allows me to leave the house for a change of scenery but without the pressures of other people being around, noise of shops etc. etc.

Would your DS come for a drive with you if you listened to a podcast or something together in the car? I know it's not the same as fresh air and exercise but it might allow a distraction and a change of scenery?

It sounds really difficult for you

I would revisit the babysitter. You may need to go down the carer/Nanny with sen experience. Work at building up with them in the house. Maybe first time literally they come to the door etc.

I have a neurodiverse child. “Fortunately” we had a Nanny when he was a baby - i work full time - and so he knows her and happy to stay with her. She’s still our Nanny, but also does evenings and weekends (she’s saving for a house so is always happy for extra hours).

I know I’m fortunate being able to afford this, but last week when I had not slept for more then 3 hours a night for 3 days I was really glad I had that option (she came over and I went to bed) and didn’t feel particularly fortunate.

Can you contact your local council and ask for a carers assessment. They should be able to assist you with some form of respite. Maybe a consistent 'babysitter' who you can introduce into his space slowly?

You need to get something set up for the summer. It is incredibly sad that he has already asked that you don't plan anything for the summer and this is also very selfish when it means that your dd and you cannot do anything either. Is his dad likely to be at home for any poi not in the summer or will you be solo for the whole 6/8weeks? I'd suggest the latter is simply not sustainable.

What would happen if dd/ds were unwell and needed to go to docs or hospital? Would he refuse to go/let you take her?
Hate to sound dramatic but I'm a catastrophizer so this would worry me, perhaps as pp above has said about easing someone in to the family?

DD doesn’t seem too badly affected by not going beyond the street , but I am very frustrated. DS has already asked me to make no plans for summer
It's really not fair to limit your daughter like this. You are effectively saying she will never be able to go anywhere with her whole family, or even with both of her parents. When your DH or you are not there, she has to stay home. What would happen if you (or DH) had to go to hospital? The other wouldn't be allowed to visit you? You need to address this. You are also teaching her (unintentionally) that her needs come second to the boy of the household, because even if that isn't why your situation is as it is, it is how she will likely see it.

My daughter (25) developed agoraphobia in the second lockdown. A year later and 150mg of Sertraline daily and she can now go outside. It's so hard. Hugs x

@MTCV I cater for DD as best I can, really what else can I do? DH works away in blocks, it so happens the Easter break is his block away. I do of course take her out when DH is home, but yes it does mean we can’t always go out as a family, but what else am I supposed to do? When DS says no, there is no bribing, cajoling or anything else that will get him out. Nothing.

Of course I have tried to address it, nothing works. It is anxiety driven, he is unable to comprehend how it affects anyone else .

Has he ever refused to go to school when dh is away? What would happen if he did? Would dd miss school too?

Is there anything specific about his reluctance to go out?
Is it the time away from his interests?
Anxiety about people?
Etc

Could he find it easier to build up babysteps to going out in the evenings/ at night? My son likes the quiet and enclosure of night time (although we don't have major issues in the day, he can be reluctant rather than outright refusal, but pick a day when he's struggling with the world and things like birdsong can exceed his ability to cope.) We did a lot of night walks and stargazing (with apps) in the lockdowns when the outdoor spaces were heaving.

Of course I have tried to address it, nothing works.
I know it's hard, we have similar set up here, but our flashpoint was a couple of years ago, when DS was younger than yours is now. I've also less of an age difference between mine. And of course Covid came at a different age for him.
Have you sat down with your DS and DH and discussed it and how it affects DD? You? Even himself? I see you have three or four options.
DS accepts he has to come with you on errands e.g. bringing sister to club.
DS accepts he has to have a babysitter (maybe don't use this term!).
DS agrees to work towards being able to stay at home alone for up to an hour.
DS agrees to consult external help, doctor/whoever.
Give him time to think over which of those would be most palatable, but whichever he chooses he has to agree to work at for a set amount of time.
At a different time, I'd also ask for him to think of a sport or some form of exercise he'd be willing to participate in (even if it's Ring Fit on the switch!).

@MTCV sorry, I didn’t mean my pp to come across as stroppy . It’s just been an awful day. I have explained to DS how it impacts on every member of the household but he genuinely does not get it. He can only see how it affects HIM and why he doesn’t want to do it.

@MTCV

DD doesn’t seem too badly affected by not going beyond the street , but I am very frustrated. DS has already asked me to make no plans for summer It's really not fair to limit your daughter like this. You are effectively saying she will never be able to go anywhere with her whole family, or even with both of her parents. When your DH or you are not there, she has to stay home. What would happen if you (or DH) had to go to hospital? The other wouldn't be allowed to visit you? You need to address this. You are also teaching her (unintentionally) that her needs come second to the boy of the household, because even if that isn't why your situation is as it is, it is how she will likely see it.

Can you tell us that what you would do it in the Op's situation?

@HollowTalk it would appear @MTCV has had to manage similar situation

I didn’t mean my pp to come across as stroppy blush . It’s just been an awful day. I have explained to DS how it impacts on every member of the household but he genuinely does not get it. He can only see how it affects HIM and why he doesn’t want to do it.
They happen. Tomorrow is another day. Hard to realise in the middle of it, I know.
My Ds also doesn't really get it either. We used a food analogy (I.e. not something linked to going out/activities) would he find it fair if we only ever ate [food he hates, plus points if DD likes it] because I decided it was all I was going to cook. In the end we also said he didn't have to understand it, we are his parents and are telling him the situation is not sustainable, he needs to trust us to accept that it is what we say.
We opted for leaving him alone. We already left him for 10 mins or so and DH was adamant that if he was ok for 10, he'd be ok for 20 and we needed to trust him. I won't lie, it was hard and I was on edge the whole time. Now he's 12 and I can happily leave him one hour, one and a half moderately happily and 2 if I absolutely have to.
Why do you say your DS can't be left alone? Obviously it's very child dependent, but I would have said the same thing.

It sounds as though your ds needs this time at home to destress and decompress after the school term. He's not being awkward, he just needs to be home doing his own thing to lower his anxiety and reset.

I have two children with asd and they don't need to go out either. Going out brings lots of stresses for them, they are perfectly happy at home and need lots of time alone.

I really feel for you as you do need out! This is a difficult time when he can't be left alone and you have two children with different needs. If he doesn't get time to destress now he'll go into the school term less able to cope with the stresses he experiences there. It's just hard. Now that I can accept my children have very different needs to me I find it a bit easier to accept how they need to do things.

OP, will he go out for a drive in the car? (If you have one)
I take ds out, he feels safe because there is no one else there, it's an extension of the house.
The motion calms him when he is anxious.

I get a change of scenery, sometimes I push it a bit further and stop at a petrol station and try to get him into the shop to buy a treat, or I park at the beach/woodland etc where it is very quiet and he might venture out of the car for a couple of minutes.

Is this a possibility for you?
I realise fuel costs might be a barrier to this though.

But what about the dd amber? She can't be expected to not be able to spend any holiday time outside the family home without her parents? It's absolutely exhausting am sure but the dd's needs should be taken to account too?

@amber757 I agree DS does need respite from the challenges of school, but he also needs to learn that he will need to participate in the real world. I worry about his health, both physical and mental if he does not venture outside of the house at all.

DS can occasionally be persuaded to come out in the car; he will remain there whilst DD plays in a play area or we have a picnic but at least DD gets to play. However, when his anxiety is high , he’s unlikely to agree.

I know he is not being selfish or badly behaved, he can’t help it , but it doesn’t mean it does not impact the whole family.

I am already forseeing another day in these walls tomorrow. MIL and FIL are collecting DD to take her out for the day.

Would your DS tolerate MIL and FIL sitting in the house with him sometimes, so you can go out, either with DD or alone?

Agree with PPs that it might be worth looking into Disability Allowance and thinking about hiring a trained person to work with DS.

Could you talk to school for suggestions? I really feel for you. My DS has autism and I worry about his future happiness. I am very lucky that he is very bright, but socially he really struggles. Solidarity sister.

I like MCTV's idea of giving different options on how to resolve this. (He goes out, works toward being safe alone, has babysitter,
or addresses his anxiety with therapy / meds to work towards feeling less anxious about it).

Also think about how you present and explain the problem and possible solutions. Verbal is usually the least useful way, and most difficult for him to understand. It being written down in simple terms, like social stories sounds like it would benefit him most, unless you think he'd get more out of picture format.

I suffered similar issues, and my parents gave me no choice. Just dragged me out and disaplined me if I kicked off. Not sure that's the best solution. It stopped any violence to others, but that anxiety got directed inside instead. I became quiet and outwardly plodding along reluctantly, but inwardly a tight ball of stress.

As an adult I found CBT and seratraline. Actual therapy was too stressful for me, but I learned some great tips from CBT handouts and websites. Whichever he chooses I would recommend some coaching from yourself and dotted around resources for CBT or other coping mechanisms.

I think you need to accept he'll never be a popping out every day kind of guy, but he will eventually need slow and steady coaching towards going out for essential errands. I find the easiest way to do this is to have a day when you do the needed task as early as possible and have rest time afterwards. Bear in mind school is a horrible overstimulating experience and he's likely to need downtime, but you could start towards this in long holidays just having one set day every week or two when he goes on a lifeskill trip. If he is unable to do even that his anxiety would need addressing as that would be horrible for him to go through.

Stating the other days as days he won't be asked to leave the home would be useful when you get around to this. Often the anticipation of possibly leaving is worse than knowing you're leaving.

Anyway, in summary: prepare you problem and possible solutions for him to choose from in a simple written or picture format. Think of some analogies to help him understand how you're feeling. Such as likening the anxiety you feel being stuck inside to the anxiety he feels being forced outside. Whatever you think might resonate with him.

Long term: help him minimise his anxiety. Coping techniques, medication, (even diet changes can sometimes help). And at this point slow steps toward life skills he'll need as an adult. While doing so remember you're not trying to train him to be an extrovert, but just to ensure he'll be able to take a bus to work/uni, pick up milk or a prescription, etc.

It’s soooo hard 💐💐💐

Can you give him your mobile to play with whilst out? A kindle? So he’s focussing on something else and not the outside world

What food does he like? Drive through mc d ? Pizza with a kindle ?

Even a trip to a corner shop for a packet of sweets? Whilst playing your mobile? Transitions are sooooo hard

A timer of 15 mins out of the house and straight back home? To gain trust.

I totally get it I’ve got a boy with pda - sky high anxiety once they decide they aren’t going out that’s it. So sad.

Hope you enjoy a little bit of tom so hard 💐💐💐💐

That sounds so hard. I wonder what is underlying his anxiety about going out, is it something like the fear of having to be around unknown people. I think somewhere like a play area could be triggering if that is the case. It's so hard to find autism friendly places to go.