I honestly can't do this anymore. I'm in a living nightmare

[LittleWhiteDogWithABlueBowtie]

I don't know what I have done to deserve this life.
I have teens/young adults all at home. As a family we are dealing with Autism, bipolar, eating disorders, suicidal ideation, college/school refusal, PDA, extreme social anxiety, agoraphobia and historical childhood SA with extreme self harming.

Every day is a fucking nightmare and a new struggle.

I am dreading September as the whole school refusal thing will start again.

They are with CAHMS, have had/having therapy. I'm in therapy. I'm on meds. They're on meds.

The whole fucking thing is just impossible and Its just getting harder and harder as they get older and I feel like a total fucking failure as a parent in so many ways and I can't ever see us living normal lives and I just do not want to live like this any more.

I wasn't a bad parent, I'mnot now but I'mfinding it harder and harder to cope.
It was easy when they were little then bad things happened and genetics kicked in at puberty too maybe? Covid isolated them all and just killed the small amount of social integration they had. They lost confidence and there was no way to keep that socialising going.

Its all my fault. Its all gone so wrong and now everyone is sad constantly. I wish I would have killed myself before I had any of them. It would have saved them all so much pain and suffering. I know that is horrific to say but I feel like I have brought them here to just suffer.

What the fuck is in this world for ND kids like them who have trauma and extreme mental health issues?? Everyone just sees them as lazy and a burden to the tax payer if they apply for benefits but who is going to hire them when they can barely attend an interview and cannot present themselves in a 'normal' manner.
Of course an employer is going to choose the confident, social person over my child again and again. And there is so much competition for a job now. There is no social housing and private rent is stupid high.
I can't see them moving out.

I just don't know what to do at all.

I didnt sign up for this. I didn't know it would be like this.

I love them so much and I am so scared about the future

This sounds so difficult for you all. I have one child who was challenging/school refuser/ND etc. Being in the teen years is horrific.

Things have got easier they leave the teen years behind, and hormones settle and school comes to an end.

Have they got youth workers? This might help them, and is seperate to CAMHS.

The DBT skills book for the neurodiverse is good, ans has helpful skills for managing emotions.

Also, making time for yourself and looking after your own mental health. I do think a level of them taking responsibility for their feelings/behaviour and understanding that you won't accept the brunt of their feelings is important

You would certainly benefit from a Team Around the Family (TAF) Plan.

This is a way for you, school, CAMHS and other professionals to work together in a cohesive plan to support you and your children.

It is consent based. If you would like a TAF, tell school, CAMHS, your GP, whoever is supporting you for your MH. Tell everyone!

Young adults can make their own choices around work and education. How old are your teens?

I'm so sorry you're going through this, it sounds really tough. I've felt the way you do, it's so painful. Please reach out for some support from the mental health team for yourself, maybe some carers groups too.
Try and avoid threads on here about benefits. There can be some really nasty things posted on this site with no regard for what people like you are going through.
Things can get better, it sounds like that will be hard for you to imagine now, but it can.
Contact Adult Social Care about the young adults and for carers support. As an above poster said request a TAF for the under 18s. I really wish you well ❤️

If they are with CAMHS, they aren't young adults, they are legally children. CAMHS chuck you out when you turn 18.

and I feel like a total fucking failure as a parent in so many ways and I can't ever see us living normal lives

I don't live a normal life. I said a hard "no" to marriage and children, I don't have many friends, and I don't go out often. And this is all OK. "Normal life" is overrated.

Schools were hard enough for autistic kids when I was a kid and they have got a lot worse since. School refusal is a logical reaction to that. I would have refused school, had I not been at a single-sex school.

90% of autistic women and girls have been sexually assaulted, compared to one in three neurotypical girls. And we live in a world where the first response to "Billy touched my fanny" is "why did you let him do that?" instead of "thank you for telling me, we will make sure he doesn't do it again". The internalisation of that sense of blame and shame, along with all the other millions of times that autistic people are made to feel bad for existing as autistic, often manifests as self-harm, especially in girls. And yes, #metoo, on both the sexual assault and self-harm fronts.

You're doing nothing wrong apart from trying to make your children conform to a world that isn't designed for them. Stop doing that and things might get better.

Hi LittleWhiteDogWithABlueBowtie,

We're sorry everything's so difficult right now. We can see you're already getting some good support on this thread from other Mumsnetters, but we just wanted to add a few links which might be of help.

Here's a link to our general Mental Health webguide which lists lots of organisations which can provide some real life support.

If you're feeling really low, please call the Samaritans on 116 123. You can also go to the Samaritans website, or email them on [email protected].

If you find texting easier, please take a look at Shout's website. Shout 85258 is a free, confidential, anonymous text support service. Its trained volunteers are available all hours of the day and night to listen and support you to get to a calmer and safe place.

Here too is a link to Mind's support page which has tips for coping while caring for others which can help when you're feeling overwhelmed.

We hope things start getting a bit easier for you soon.

God I hear you

I Have an adult dd with autism and adhd. Today I drove her to the charity shop where she was due to meet and do a trial shift. It transpires the person she was due to meet was on holiday and had told her so and asked her to rearrange but she’d totally forgot.

i could fucking cry.

and then afterwards she said that she didn’t know what to say in the shop to the other person who was there because she was worried about upsetting me.

honestly I swear it’s easier to just leave them to it.

I’m sorry for all you are going through.

Feel the same OP.
Utterly dreading Wednesday.
Both mine have spent six weeks decompressing, regulating, doomscrolling and bedrotting.
Managed to get one out the door early doors when we broke up and the other out for one lunch, only for both to refuse to go out on two preaaranged things the following week.
They ended up doing nothing for three weeks and became nocturnal.
I booked a week away in an Airbnb and one in fairness did a few things. The other (PDA even though I know it's not officially recognised) would not leave the Airbnb all week or the car on the way back.
It is debilitating. Relentless. Depressing.
The eldest will go to school but is often late and thrown by the slightest change or obstacle. They have already said they are dreading it (final year, exams are calling).
The youngest is about to hit puberty and taller than me. It is like moving a mountain.
I cannot afford to home school.
I too fear for their future.
Just wanted you to know you weren't alone.
☕🍰

I go silent around others when my mum is present for fear of saying something that seems reasonable to me but she thinks is rude. But then I'm rude for saying nothing. So I avoid going anywhere with her because being called rude all the time hurts, and then I get accused of shutting her out of my life.

I can't win.

Folding money says your daughter feels the exact same way.

Funny how we are expected to live up to your expectations, but it doesn't dawn on you how hard that is for us.

OP, some stuff that might help and why.

1. Get your secondary aged girls into girls-only schools, even if they have to take buses to get there. Why: It takes away the utter terror of being at risk of sexual assault 200 days per year and it takes away the mental load of trying to use social skills that you don't even have to detect and avoid high-risk boys and high-risk situations.
2. Look at Forest School or similar alternative provision for your boys. Why: Whilst autistic girls can often cope in mainstream schools, boys often don't, but thrive in alternative provision. You could consider alternative provision for the girls if there's no all-girl schools in commutable distance, but my gut feeling is that their school refusal is a consequence of sexual assault and that taking the SA risk out of school will resolve the girls' school refusal.
3. Get stim toys. Why: Self-injury isn't just an expression of pain so big that tears and words cannot convey it, it can also be a kind of stimming.
4. Try aerial classes. Why: Some of the moves hurt, but in a controlled non-injurious way, so it can scratch the same itch that self-injury does. Being upside-down is a kind of proprioceptive stim. Like other exercises, it builds strength and releases endorphins. It isn't competitive and doesn't require being in a team. It seems like an odd suggestion, but 100% of autistic people I know who've tried it liked it.

Are you on any PDA-specific support groups? I've found that incredibly helpful.

Hugs - it is insanely hard.

You aren’t wrong.

but the trial shift had been cancelled because my friend was on holiday (my friend who I asked for a job for my dd in the first place) and my dd totally forgot so I drove a long way.

i know my dd struggles. That’s why I get her support and go to activities I fucking hate because she’s too anxious to go on her own (and if she thought I didn’t like them she’d refuse to go because she doesn’t want to put me out even though me making effort is the only way to get her out of her room).

I’m severely physically disabled by the way so although my dd has her own struggles (and you have yours) I also have mine.

I don't have any advice but I can empathise with you somewhat. I have one adhd teen and one with autism and we have periods where it feels like we lurch from one disaster to another. My teen with autism was suicidal at points, has had bad anxiety forever, had really difficult school years with social isolation. Right now though he is going through a good patch, he just got his exam results, got accepted to university and got a part time job, all in the past few weeks. I know that the dramas aren't over and starting work and starting university will come with their own challenges but there are some wins along the way. Hopefully your children will start to experience some wins soon too ❤️

Yeah, it's not helpful that she forgot. It's also completely understandable that she forgot, because the autistic brain doesn't do short-term memory very well.

I absolutely panic if I don't have my phone or the battery is flat because my whole life is organised in there. I've never been able to remember events, cancellations, etc, even things like bin day that happen every week. If it's not in the calendar, it doesn't happen. Your DD needs to link her phone calendar to an online one (I think Android links to Google automatically, not so sure about Apple devices) so the data is safe if she loses her phone and then use her phone the same way that I do.

Dear OP,
You have not done anything wrong.
I’ve had a few years like that with my two (currently nocturnal) DDs. Older one (16) has not significantly left the house for about 3 years and I feel failed by every single agency/company/health advisor etc, but realistically there is nothing they can do either. Don’t get me started on CAMHS or EHCPs; the system is completely clogged up and often not fit for purpose but we have to tick the boxes. I have never met an effective social worker either in this regard. So we just plod on which is frustrating.
I was judgmental about school refusal before it happened to me and you try everything and go mad doing so. I think this made me feel even worse as this sort of stuff is so misunderstood.
NONE OF THIS IS YOUR FAULT. Something has happened in society/ education/community/social media/Covid, whatever. It doesn’t really matter how and I also get sad thinking back to when they were little and everything seemed fine, but in 10 year’s time we’ll look back on now and surely it will be different again.
Put on your oxygen mask and look after you, be kind to yourself and your children and you will get through this together. When you’re in the storm you have to keep going, but sometimes you have to change the speed or direction. The future will take care of itself in the fullness of time. The journey is just going to be different to what you imagined, which can be hard to accept.
The best piece of advice my Mum gave me: there is a point where you have to leave it to the professionals as you have reached your limit. Even if the professionals can’t do anything either, you have to share the mental load as it’s utterly horrible to live through.
Love and sincere respect to you OP. You are going through worse than me by the sounds of it but you are not alone in this, even though you feel like it. And you have not failed, nor have your children.
Please take care x

Op I’m so sorry you are struggling.

I only have one adult dc with ASD and supporting her nearly sent me under tbh. She is doing much better now though and there is light at the end of the tunnel.

That’s all I wanted to say really.

That NOTHING in life stays the same. Change is guaranteed. So please try and hang in there.

It takes a long time but each of your children will have developed and made progress in five years, they won’t be the same as they are now. Development in teens and YA, especially if ND, is never linear. There are zig-zagging setbacks, but overall they will make progress and need less input from you.

In the meantime op, you desperately need support. FWIW I hereby give you permission to be utterly selfish. Do what you need to do to make life more bearable for yourself as no one benefits if you go down.

Lastly, you feel like a failure, but please don’t because although it’s not clear to you now, you are succeeding by just being there and being alongside your DCs as they struggle, you walk every step with them and, despite all evidence to the contrary right now, those struggles will help them, and you help them every day just by your presence.

Please reach out for help in rl op 💐

@LittleWhiteDogWithABlueBowtie you're amazing. You deserve and need support .
There's great support here and out there.
I can't imagine how hard it is for you.

I'm sorry, OP, that sounds so difficult. You're really in the trenches at the moment, and I know it must be relentless. As pp have said, change is inevitable, and some things will undoubtedly settle and get easier as they mature out of their teenage years - but that doesn't feel like much comfort right now when you're struggling and worrying, I'm sure.

But you're not a failure as a parent. Not at all. You obviously love them so much, and you're doing your best in a bloody tough situation. That's amazing, and something to be proud of. Please reach out for help - whatever you can get. You deserve support while you support them

I get you. Been living with nocturnal dd with many issues for three years now nearly four since huge burnout plus other physical issues. Bits really hard and those that haven’t lived it really don’t get it so they will give stupid advise

one on this thread suggests stim toys. really!!!!

Also a mum of ND household. Permanently exhausted / anxious / terrified for the future .
However , It is what it is - it is a one day at a time ‘job’..
I spent a lot of energy over the years trying to coerce them into being different versions of themselves, to join clubs , try volunteering, courses, apply for jobs until I realised that trying to fit square pegs into round holes, results only in badly damaging the pegs..
I have stepped back ( from their backs ) and there is now zero pressure on them, which has taken the pressure off me. House is calmer .
I doubt one Ds will ever work ( high functioning ASD but very socially anxious & pda)
Take the small wins . Look after your own self care too. Don’t panic looking too far ahead or comparing with NT families.
It’s a bespoke occupation, not one size fits all, but whatever gets you through - survival xx
You sound so caring & such a loving mum whose bucket is overflowing.. but today is another day and you’re not by yourself, there’s lots of us out here just getting by ❤️
with love xxxx

Gently, I’m going to challenge the idea that you’re a bad parent.

Our neurodiverse children are harder to parent. They need more time, support and attention than most other children. They need parenting in a different way. They have mental health comorbidities, or other nd comorbidities. And the world isn’t set up for them, so we have to spend our parenting time balancing their needs in a way that other parents don’t.

It isn’t likely that the challenge is your parenting - it’s likely that the challenge is that the parenting you’re doing is permanently set on hard mode.

My advice would be to take a step back and work out what happy would look like for your kids, and begin taking baby steps to get there. If school is the biggest stressor, can school look different? If mental health is the biggest stresdor what would shift the mental health concerns.

@LittleWhiteDogWithABlueBowtie you are not a bad parent in any way. The situation you are in is extremely challenging and you are working extremely hard in that very difficult context. You are an excellent parent who has an overwhelming load to carry.

It sounds like you have positive relationships with your children and that is a very real positive.

I don’t know if there is any extra support where you are but definitely try to keep in with anything of that nature around you because this is not a problem to solve, it is an evolving situation that you are managing well. It will only ever be managed, which is true for many disabilities.

My son is autistic and he is very disabled by it and we have to constantly adjust or expectations for him, whereas my other kids are ND one very much less so and with support are doing well. There are no hard and fast outcomes with autism or ND. Every situation is unique.

A point will come where you will have done the parenting bit and it will be time for the other services to take responsibility given how disabling the ND you are dealing with are.

There isn’t a way we can parent our son out of the degree of disability he has and it sounds like you are in a similar situation. Our son will always to some degree be a dependent adult that is what it is and that is ok because nothing we can du will change that.

If your children are in the same situation that is ok too. We could burn ourselves out trying to fix the unfixable and you can do the same but the outcome will not change so we just tap away and try to constantly get little developments and improvements and that is good enough.

Is there a dad involved? I’m just wondering whether you can divide and conquer a bit. Get a night off occasionally, to go away and be on your own.

Feel for you I only have the one with autism, school refusal etc and that’s hard enough. I also feel guilty about bringing her into the world, she’s so unhappy and I’m scared for her future.