Really need some opinions on what feels like an impossible situation! Cannot find a solution that makes everyone happy and potentially means me losing my DD.(220 Posts)
MNHQ have commented on this thread.
OK... so a bit of history.
We own a house that we lived in from 2004-2016.
We started to outgrow it but due to historical debt problems and DH recent self employed status we weren't in a position to move.
DH was earning more money than we had ever been used to and we decided to rent the property out and rent another, much larger property to solve our problem.
We rented a house completely out of the budget we could afford to buy. Went from 3 bed end terrace to 5 bed, 3 storey, 4 toilet, 4 reception room.
My DD (16 at the time) had been suffering terrible depression and anxiety, she was in a very terrible place, hugely depressed, self harmed, didn't attend school for a long time - during this time she was also diagnosed with ASD - she was beginning to recover slightly when we moved. I was able to give her essentially her own floor in the new house - big bedroom with ensuite and walk in wardrobe and everyone else in other part of the house.
This helped her massively - she likes to be isolated from the rest of the household and spends huge amount of time in her room.
After just over a year, our landlord was selling the property so we moved to where we are now. Smaller and less grand than the first rented property but still bigger than our owned house. I gave DD the master bedroom with ensuite so that she was still able to have her private space.
DD is now working full time and managing life way more successfully than she has before, or that I ever dreamed was possible a few years ago.
The issue is now that DH now earns nowhere near what he was, that opportunity ended and he also hated working away from home for so long - we made the decision for him to move back home into a permanent position again and taking a big pay cut.
We are now forking out nearly a thousand a month on this house and whilst we can afford it, it eats up a lot of our disposable income and seems less worth it than before as this house isn't as large as last and is in way worse area.
The only options available to us are to return to our own home -
We are deciding wether to go back just to try and sell it and move on (still have concerns about getting a mortgage for significantly more than our current one)
Go home, get a big extension on it and make it as nice as possible.
Go home, spend less than option above but get conservatory converted to a bedroom and put in new bathroom. So that there will be room for all 3 kids to have their own rooms.
2 younger kids (1 teen 1 almost teen) are keen to move back - that move would be really positive for them - closer to school and their friends not to mention as a family we would have an extra £500 a month at our disposal.
DD will not even discuss it, she has unrealistic expectations now about "needing" an ensuite. She believes that if she went back there she would not cope. She sees it as the house where all the bad stuff happened and that she cannot go back there. It is very difficult to reason with her as she will say, I wanted to die when I was there - how do I argue with that?
Any time it has been raised she is adamant she won't come back - her plan b would be to move in to my Mums spare room , this would be ok with my mum but would definitely have an impact. It would be so unsettling for me, it would feel temporary and makes the decision to make this move so hard as by doing so I am effectively rejecting one of my children.
DH has lost patience with me dragging my heels over this and has contacted the letting agent and given them 2 months notice and given our tenant 2 months notice. He sees it as us throwing away money we can't afford every month.
My daughter nearly 20 now, is away on a long holiday at the moment (she really is doing way better than ever before, managing to travel, work, drive etc) although still struggles with some aspects of life and can be very rigid, catastrophise and prone to having bouts of low function and mood. I love her so much and I think my way of dealing with her illness was to try and protect her from any negative feelings, trying to solver problems and make things as easy as possible for her.
During the time of her worse depression we had a lot of trauma in the family - we lost my grandparents, my dad and my mum was critically ill all in a very short period of time. Since then my step mum has died and my DDs uncle - we have been through a lot, particularly DD for her age and with fragile mental health.
So I have the job of breaking this news to her on her return, it has made me hugely anxious as I just know its not going to go well.
If I took DD out of the equation it would be an exciting move - being back in our own home where we can make improvements and decorate etc The kids would be excited me and DH would be excited and relieved to be saving the money and be able to go on holiday etc.
However, the reality is I just dont know what the next few weeks are going to hold - I have a fear that either way, wether she comes with us or not it will push DD back to the state she used to be (and in my worst fears cause her to self harm or wore) and I would feel responsible for ruining her mental health again. I worry that she won't cope and will hate me for it and cut me off.
Would love some support to unpick this in my head !
Thanks to those who have reported this thread to us.
Can we ask you to please bear in mind that the OP is seeking support for what is clearly a difficult situation, and that any suggestions her DD is 'spoiled' or being 'enabled' by the OP, for example, are not on? Such posts don't fit with Mumsnet's basic philosophy of support and advice for all parents.
We also ask that you consider the challenges many parents of children with disabilities, or who have disabilities themselves, face on a daily basis.
In all honesty I'd sell the old house, you can't expect her to stay there again and it would be so sad for her to have nowhere with you. Having her live with your mum sounds like a good compromise, while the other kids enjoy the bigger rooms, then when you've got your new home make sure they all have enough space.
And no, the youngest doesn't have only a small room forever because someone else was born first, that is terribly unfair. If they're under 7 then a tiny room is great, after that it should be equal between all siblings. We used to rotate rooms.
You have done a really good job with helping her so far getting to where she is now when you look at how she was before,
I think at some point she has to be more independent and you need to move towards enabling her to be that. Like other people have said you won’t be around for ever. Not nice to think about I know.
A move to your Mums would be the first step. Away from you but with somebody she knows. I know how you feel having a child with mental health problems myself. I hope it all works out well
Hi. I have a DD with ASD and some similar issues. Firstly, you’re a great parent doing the best you can. Nobody understands situations like this unless they’ve been through it, even then, no two people with autism are the same. I, like you, worry immensely about my DD independence and ability to adapt to new situations. The difficulties aren’t uncommon and you are not being ridiculous for worrying. This is your child. It is very distressing to watch them suffer and to worry about their mental health, especially if you are not autistic yourself and see the world differently, experience emotions differently. It is incredibly hard to know what to do. I also recommend you see a counsellor, I suggest a psychologist, and I think your DD needs to go with you. It’s very different for those on the spectrum when it comes to the appropriate time to leave home. Separation anxiety is very common and you might be experiencing that yourself. What might seem irrational to others, is perfectly reasonable to someone on th spectrum who is juggling complex sensory sensitivities in a world that is chaotic to them. I dearly wish the world was more sympathetic and understanding. Due to my child’s difficulties, we have no other children, we make important life decisions based on what would cause her the least distress, because we prioritise her life over everything else. I don’t think others can understand what it is to worry every day that your child might not make it. It sounds as though your DD has made really big improvements and is quite stable. So this may be a good time for the next step up in independence. You can work with a therapist while this is happening, and you can work out a system where she sees you regularly and you are in enough contract to make you both comfortable. This isn’t easy for anyone, but I think you’re doing a marvellous job and I understand your worries completely. Also, your DD is not unreasonable or unusual for someone with autism. It’s just the world and our society isn’t great at adapting and understanding. She sounds like a very confident person who is doing well with her extra challenges. Keep reminding her of this and of how proud you are. Her inability to cope with changes in living arrangements, and food ( I so get that! ) are not her being difficult on purpose. I wish you the best and admire everything you and your DD have achieved. My child is coming up to uni age so we’ll be navigating this too. I hope we manage it as well as you all.
There is such a lack of understanding of autism in some of these replies! ASD doesn’t disappear at the age of 18.
@PeachyPrincess @araiwa exactly what I was thinking.
I get this has issues - I have ASD myself. But at her age she should be helping to facilitate arrangements.
I only wish by parents were as supportive as you op
ASD is different for everyone. What is an appropriate age to be independent for some, will not be appropriate for others.
@cherrytreeblossom I know you said your daughter is going to a local university but it might be worth checking whether they have asd friendly accommodation available.
A disability should mean she can stay on campus for the duration of the course, you can provide dinners, laundry, support visits etc and the house issue is sorted. Your mum is the interim solution, until uni starts.
Then in 3 years, you may have extended your house /cleared your debt for a mortgage elsewhere, and your daughter may be ready to spend her graduate salary on her own place?
Don't discount living at university just because it's local, disabled students are usually exempt from the distance rules about living on campus.
People saying others must just not have experience are wrong.
I have experience of parenting an asd child through the teenage years. The problem here is that the dd is handling this better than the mum. The mum is in fact holding her back and damaging the other kids.
It's not easy, but the OP needs to seek help and stop on this path
Jessgalinda - you don't have experience of parenting my asd child whilst also caring for your father on his death bed, losing both your grandparents and leaving said fathers death bed to say goodbye to your mother who became critically ill and nearly died within a few weeks - whilst trying to work and care for two other children.
My life at that time was almost comically dreadful - my husband was made redundant which in some ways was positive as he was around for the kids whilst I cared for my Dad and then travelled to hospital to my mam, he then broke his ankle which meant he couldn't then drive the children to where they needed to be.
My mum woke up from coma and asked how my dad was - his funeral had been 2 weeks before.
Ive found myself in a difficult situation, admittedly partly because of my actions but they were actions borne out of survival.
I have horrible memories of tending to her self harm wounds whilst wishing I could run away. Feeling completely unable to cope but having to find a way so as not to unsettle her any more.
Nights in hospital after suicide attempts, police visiting to collect photos of her when looking for young missing person and trying to shield my younger two from the panic and distress.
Spending whole days completely depressed and anxious with the sole target of appearing normal by the time the kids came in from school and make their tea.
I have said throughout the thread, with hindsight I would have done things differently.
I also could have managed things a lot worse - my whole family was in complete crisis and we found a way through.
I am not an idiot or shit parent.
Do you have a garden? Could you afford to build her an out house maybe...would mean she could have her space and also not be in the old house.
You could even make her a simple bathroom with a compost toilet and water tank so you don't have to do all the plumbing into the mains.
My family outgrew our house and I couldn't afford to move and have built a lovely cabin in the garden on a budget...it's everyone's fave space!
Jessgalinda STOP. No two people with autism are the same. Either offer help and words if support, or don’t comment.
Please don’t listen to those accusatory posts. I think you’re very brave to post here, you do get helpful stuff here for sure, but along with it comes really really unhelpful and unkind stuff that serves no purpose. All parents get things a bit wrong sometimes, it’s part of parenting. Overall your attitude and approach is wonderful. This is a hard thing to navigate and you’ve experienced a lot of trauma so it’s understandable to worry about what to do.
STOP. No two people with autism are the same. Either offer help and words if support, or don’t comment.
Actually I have posted plenty of support.
But the OP needs to get herself some support. Because this cant continue.
What happens next, is going to be upto op. Who also admits that's she knows her thinking and actions are off.
Its understandable why she is doing what she is. But that doesnt mean it should continue.
I have posted in AIBU so I suppose its par for the course.
Im more than happy to stand and wave the "I fucked up" flag but it is what it is.
I am feeling indignant that actually, things could have been a hell of a lot worse. I sacrificed many things in the desperate attempt to just stabilise a crisis situation. I gave up a successful business as I didn't dare leave her in the house alone.
Once she became more stable, I returned to work in another job. I work full time and now find myself less able to be completely available to her.
She has responded wonderfully to the support and as Ive said in the thread is now living a life I didn't dare hope she would be capable of, but it all feels very fragile. Ive mitigated this by (foolishly) protecting her from negative situations where possible and I now find myself paying through the nose for a house we shouldn't be living in to keep her comfortable.
My DH has forced the situation (quite rightly I have to admit) and Im now facing the realisation of forcing her to deal with emotions that I have protected her from until now.
Its all very messy and complex and peppered with my own mental health difficulties.
I have spent the day, after receiving responses on this thread - pulling out all of my financial paperwork and sorting through issues that need to be resolved in order to be able to get a new mortgage and move on as soon as possible.
Either way, were moving out of here in 8 weeks and into our old house. Either with or without her.
Saying someone is ‘damaging’ their kids is horrible. This is a support site. MNHQ have already commented on the behaviour on this thread and I’ve reported your comment. It’s not on. You should know better.
cherrytreeblossom I don’t think you have fucked up. You did what you had to in order to keep your child safe, manage her fragile state and get her through a difficult phase, which you have done. Protecting her while she stabilises is the right thing to do. You’ve asked for advice here on how to manage this next phase and set of changes, and been given some good advice I hope. But there really is no point in going over what you had to do to get your child through something, you had few options that wouldn’t impact everyone else. Your child’s life is the most important thing and you managed well. It won’t help you or your family to tell yourself you fucked up. You didn’t. You did what you had to.
I wouldn't want to move back to a place that I had been very unhappy in. But she's 20. She's old enough to move out for a neurotypical kid, trickier if you think she didn't have the skills for it due to asd.
Saying someone is ‘damaging’ their kids is horrible. This is a support site. MNHQ have already commented on the behaviour on this thread and I’ve reported your comment. It’s not on. You should know better.
Who do you think you are?
Theres lots of potential damage happening to the other kids. The op admits they are super flexible and accommodate their sister etc. Its damaging.
That's why she needs support and help. It's going to cause other issues.
I have lots of sympathy for the OP. But that doesnt mean I am going to pretend she isnt, potentially, causing more problems down the line.
Who do you think you are?
Right back at ya.
You’re just another parent who thinks they can make horrible comments to someone and then gets uppety when they’re called on it. I’m reiterating what MNHQ said.
She’s a fully grown adult. Many people have families of their own at that age. She can find her own place if your home bothers her so much. Moving back into your own home makes far more sense financially and for your other DC, I wouldn’t even hesitate.
She’s a fully grown adult.... with autism.
outpinked - I moved out younger than this, in fact when I was her age, she was 2!
Im quite sure that my other kids will be ready to be independent before she will.
It sounds a very difficult situation OP and it is great that you have in your stressed state taken action and gone through your finances (if it were me I would totally be ostriching with that level of stress).
Is there anyway that dd1 can move into your mum's on a temporary basis to buy you time to consider other options. 8 weeks is not a long time to arrange alternatives. If your mum is amenable it would mean she would be supported to become a little more independent in a safe place for her.
Transition to university can be stressful and isolating for some and I can see why uni accomodation might not suit initially. Then down the line once she has got used to uni life she may want to live in uni accomodation, stay with your mum or come to be with you if that is then possible.
I’m actually quite horrified by MNHQ for deleting one of my posts and saying that no one can say OPs DD is spoilt or enabled.
What on earth is going on? So disabilities mean that they cannot be spoilt? Or enabled? Surely that is discrimination?
Orangecookie Read the talk guidelines
My plan as it stands now is to move back in to the house, DD going to my Mams and prepare it for sale. Hopefully sell it fairly quickly even if we lose money and manage to secure a mortgage to move on to a property without all of the bad memories.
Ensuite won't be guaranteed! but if I dont have the guilt of forcing her to live somewhere she finds distressing I can tackle that issue separately.
I would go with letting DD move in with your Mum as an initial solution. Then start making the necessary changes to the house so you are changing it's appearance and in many ways the memories associated with it. I'd prepare her a room, and just leave the door open for her to return. Chances are that she will miss you all and realise that her fears about the house are unfounded.
It's bloody hard being a parent at times but you have to do what's best for the whole family, not just one of you
JessicaWakefieldSVH I have seen you on a few threads lately. You seem to think you can tell people what to think and what to say.
Just because a poster is harsher than you would like does not give you the right to tell people to STOP or what they can put here.
@jessica I’ve read the talk guidelines and I adhere to them. I’m happy that there are guidelines. What really worries me is when these are not applied well, which in the case of not allowing posters to say someone is spoilt or enabled, especially when this is not said in meanness or lack of understanding, and said in order to promote fairness to siblings, in a family, is worrying.
Orangecookie then email MNHQ. They’ve explained their decision in a post upthread, in case you missed it
OP it sounds like you’ve reached a solution. I haven’t read all the posts so I don’t know about what others have said. All I can say is that I wasn’t trying to berate you, I get it, I have two extremely lovely kids but they have issues too, but we just have to be so careful to take care of all of them, which is not always giving them what they want. Good luck anyway.
@jessica I was replying to it here. Look I get that we need guidelines, I get that we need a certain degree of compassion too, things can get a little heated. I just think that people with disabilities are given a disservice if we say they aren’t capable of kindness and cooperation. Just my view.
Orangecookie that’s not what the MNHQ post was about though was it? Autism is complex and when it comes with mental health issues, it’s not fair or reasonable to say some of the things being said on this thread. It’s why autism is so difficult, the lack of understanding. It’s not about ‘what they want’, it’s not that simple. If your child has self harmed and/or been suicidal, it’s a very tricky road to navigate. I don’t know what your post said but I think the MNHQ comment was fair and inline with their guidelines. You can always challenge the deletion if it really bothers you.
Op what a bloody lot you’ve been dealing with. I completely understand that your daughter is despairing at the thought/reality of moving back to a place associated with terrible times for her. You must all be anxious that her progress could be set back.
Solution of her living with your mum seems best all round. I wonder if she will feel (irrationally) that she has been excluded from the family who came before her mental health. It just needs careful management so she knows she is loved and supported no matter what.
I have said throughout the thread, with hindsight I would have done things differently
I really don't think you should feel that way at all cherrytreeblossom!
Parenting according to your dd's needs and your family's desperately difficult situation may look like indulgence to some people but in my opinion it has probably have been life saving.
All this bollocks about what autistic children / people "need" to learn/do to fit into the "real world" is at best unhelpful at first it is deeply harmful. Your dd is unique and has her own path to follow. You have to take it a step at a time because the stakes are so high.
You are an amazing parent who in all likelihood has enabled her dd to achieve so much more than might otherwise have been the case. Just because that achievement doesn't match what some people seem to see as the ultimate goal of passing for NT () don't start doubting yourself.
There are many parents of NT and autistic children alike who think tough love is the only approach. And that you need to push your child to fit the standard profile. You don't!
Your dd sounds awesome like you. She has identified the challenge and provided a solution!
Good luck to you, your dd and the rest of your family
RaffertyFair spot on. Behavioural modification springs to mind.
Come on she is not that same younger teen and I say that with a 17yr old ASD DS myself. If she can travel and stay in a different place in a different town or country she can move back. Dont be manipulated by guilt tell her you will make reasonable adjustments to help her cope maybe include her in how you could redo her room from an extension any chance of an onsuite. Youve done an amazing job my DS is nowhere near that he still doesnt leave our own little house/family set up you have to do whats best for you all.
She's not a child.
She's a grown woman.
She needs to move out.
Sorry just realised your selling and decided on your Mums for her. It can take 6 months to sell and buy could she be away for that long if she knows ultimately the plan is to move elswhere I still think she is better with you. Maybe a period of adjustment. To all the rest my ASD DS is spoilt unreasonable selfish and I love him more than life itself, he doesnt even realise he is and we are working on it.
I think you need to put your financial security first - possibly better to be paying down a mortgage than paying out rent - and what's right for your family as a whole.
I agree she is being very black or white and i suspect she wiii climb down when she calms.
20 is neither here nor there. Only a couple of years ago she was suffering ‘terrible depression’ and self-harming.
I’m in my mid 50s - I’d Hope if I was in that situation my family would rally round and support me ! I’d do it for them in fact I have done it for close friend who lived with me for a bit when he had mental health problems.
what contribution does your working daughter make to household finances?
So she can travel without you there.. Is she getting an en suite bedroom everywhere she goes
She is going to uni... Will you be paying for her to have a flat on her own then cus she doesn't like idea of sharing?
She goes to work... What happens there? Does she interact with people?
I can understand she doesn't want to live in the old house due to the connotations but I do think she is behaving very unreasonably asd or not.
There is a lot of contradictions here about what she tells you she must have to be able to live with the family and what she seems perfectly capable of tolerating elsewhere when it suits her.
What will you do if her siblings said they now felt depressed anxious and needed their own spaces complete with en suites?
A family needs to balance everyone's needs, not just exist for the benefit of one.
Her dd has chosen a uni nearby so she doesn't have to live in student accommodation. Might be worth RTFT.
I'm autistic. I've also suffered depression and anxiety my whole life. I've had a few breakdowns.
OP you have done exactly the right thing in supporting your daughter. She's not spoilt, you have accepted her challenges and worked with her on them. That's awesome.
I don't think that you can expect her to move into the house and I think she will view it as a betrayal that you are going to. But all you can do now is explain its so you can sell it and stress that you want her to live with you and that this is temporary.
Expect a meltdown though. For her I think the house represents all the shit she's experienced and she won't be able to face going back. But she can stay with your mum while you sell.
Can you put it on the market now, while your tenants are on notice? It may then sell before you even need to move back. And id make sure to include her a lot in looking for the new house.
I can't believe how harsh people have been on here. There's such a lack of understanding about autistic people.
Hey @Cherrytreeblossom - let me first say how well you've done and are continuing to do. Hindsight is a wonderful thing and when you're in the midst of a crisis, all you can is your best at the time. You've been through a lot, and you sound like a lovely mum.
My DS has ASD and my daughter probably is too, currently undiagnosed. What not everyone realises is that ASD changes everything. She can't just grow up and move out like a regular 20yr old.
I think it's worth pointing out that possibly the reason why she is functioning as well as she is now, is because you've given her the space, support and understanding she needs. She's at the age now where she understands what she needs to function well, and for her that means space away from other people, even her own family who she loves. However, at the same time she still needs ongoing support, especially as she's prone to periods where she doesn't function so well and her mood becomes low.
It's clear your daughter has fixated on the house as being the cause of the bad things that happened and she's incredibly anxious about returning to such a dark mental space, especially as she has big plans about going to university. For anyone with anxiety, but especially so with individuals with ASD, it's so easy to pin irrational feelings on something external, such as the house.
I understand why you're anxious about telling her. You sound worried about whether she'll understand why you've made the decision. You're worried that she'll feel that you chose the house over her. I can only speak for my son, and my friends' children many of whom who have ASD, but I can see why this would worry you. Again in my experience, having some feelings of control can be very reassuring for those with ASD. Sit down with your daughter and explain financially you can't stay where you are, or continue to rent one home and pay the mortgage on another. Ask her if she's happy with the plan to sell up and find somewhere else and give her the option of moving back temporarily or staying with your mum temporarily. If she's not happy, ask her for ideas. Things have to change, and that's hard enough for many people on the spectrum, but if she feels she can play a part and keep some control over her future it might help.
What I would be doing is looking to create a self-contained unit for my daughter. It's hard to tell on here but it sounds like she's not really ready to live completely independently. There are sheltered housing units but they're hard to find and can be tough to access. I think having an annexe or self-contained "wing" with its own kitchen, bathroom etc would give your daughter independence and grow her skills while still having your support if needed.
I've generally found that baby steps work the best. Yes, many people at 20 are ready to become independent but that doesn't sound like the case here. I think she's doing so well because she's got such a solid foundation - that doesn't mean she's ready to strike out completely on her own.
Sorry for long post, your situation just really struck my heart. I think you're doing amazingly well, and you sound like an incredible mum to ALL your children xxx
It sounds like you’ve a wonderful support to your daughter. But your Dh is right. Please stop trying to win her round. It is time for her to leave home, and it’s great that your Mum can provide a sort of halfway house for her. It may be that she will be more equipped for Uni in consequence.
I agree with PP. With the greatest of respect, you're not helping her. ASD or not, she needs to grow up! Plenty of young adults with ASD of varying degrees manage to live either independently or without an en suite at least!! Many young adults with ASD are capable of taking some responsibility for themselves!!
I think she needs to go and look at the old house and be inside it to see how it makes her feel now. She assumes she will find it traumatic but she has no idea how she will actually feel or react. Do that before you make any decisions on where she will live.
Also, she has to take responsibility for her own mental health and learn coping strategies for unwanted situations. Things might be hard for her but she sounds stable and strong enough to cope with a house move. She actually sounds much better than I was when I did it!
Sorry OP but your younger 2 will gradually build up all this resentment as it seems your DD is using her disability to get her own way.
She went off travelling on her own where I guarantee she would of not had the same Facility's she has at home. She holds down a job and is off to Uni, yet your still treating her like a China Doll, whilst your younger kids get shoved in the box room!
No! You have 2 other kids to think about.
Thank you SO much for the recent supportive posts from people who really seem to get it.
I absolutely feel she has been able to do as well as she has because she was able to fully decompress and Ive been coping on her behalf with whatever I can. She is coping with a lot with the emphasis being on "coping". She doesn't really socialise and like I said earlier, work takes so much out of her she spends the rest of the time lying in bed and withdrawing from the world.
She often becomes upset if she has had an interaction that she didn't understand, peoples behaviour really confuses or upsets her sometimes.
I do have to adapt my responses to keep her steady and its exhausting - I do need to sort this out. For eg on way to airport her boyfriend realised he forgot his wallet and we had to go back for it. Rather than me expressing my own stress, I have to swallow it down and be the rock. "Thats ok, Ill take you to airport, start checking in and Ill go back for it, its not the end of the world, its going to be fine" Through gritted teeth and anxiety building. But Im very aware of her tipping point and desperately didn't want her to panic and refuse to go.
Im thrilled that she has managed this trip and to the poster that asked, yes, she does have ensuite facilities lol Its been a source of humour that she is certainly not having the traditional travelling experience. She is staying at luxury hotels at each stop with the itinerary planned around staying in the room and missing the sightseeing if she isn't up to it.
She has been on various trips and not left the room but that still makes me happy that she is lying in bed in a different location! She has saved hard for the holiday, one benefit of not socialising is she has little to spend her money on.
She contributes financially by way of paying board. She is very good with money, meticulous with budgeting - I could take a leaf out of her book.
Id like her to have more talking therapy as her thinking is still very rigid, but typically, she won't pursue this as the therapist that really helped her a few years ago left the service and "no one else will be like him"
Can I just say that I am very sensitive to all of my children and how they feel!
Im not just tuned into DD and making sure she is ok, it goes without saying that they each have that from me. When she was very poorly however, yes her needs dominated, as would any childs who was acutely unwell.
If anything, I spend lots more quality time with the other two as they enjoy socialising with me and going places. It quite often feels that we are a family of four plus DD as she can be so withdrawn from us a lot of the time. The story of this thread might make it sounds as if it is me and DD and the others left in the shadows but that is really not the case.
My DS has some physical health needs at the moment and has my full support and care for these. I have a brilliant relationship with my other children and they have a great relationship with DD. She gives my DS lifts at his beck and call and spends time doing my other DDs make up etc.
You've clearly given so much to this OP, and you must also have been a great mum to your younger kids for them to be so kind and supportive to their older sister. What help do you get to carry your own upset and stress? When I read
Rather than me expressing my own stress, I have to swallow it down and be the rock
I felt tense for you myself. Do you have a counsellor you see on your own behalf? It would cost money but you matter too and it also makes sense from the point that if you're holding everything else up, no one else can afford for you to go under.
There are just so many people on this thread who have zero clue about autism and what it is like, they don’t do things to be difficult. Suicide and self harm is incredibly high in the autism community so just think about what you’re typing.
Fuck off to all the people saying people with ASD can live alone work manage etc....just because one or some people with ASD can that doesnt mean everyone else with ASD can. I think the pareng knows what their own ASD child is or isnt capable of they will have spent their whole friggin life thinking about it. To say the other childrens needs arent being considered is insulting. If someone had a physically disabled child that response wouldnt even come into it. Yes as parents it is our responsibility to help them cope with new things and new situations but at their own pace and capabilities. 😟
It works best here if I explained what's definitely happening-we're moving back to our old house.
Then offer option - you can choose to move back in with us, live with gran (but you'll have to help cook etc) or find another place with your student loan.
(We swapped size rooms when we moved so the youngest didn't always have a small room)
Stop cooking for her though, she chooses to eat the family meal or can cook for herself.
Cherry this is a good channel, Asperger’s Girl. This video is particularly apt- what not to say to someone with autism! But she has a few good ones on Uni that might be helpful
But cherryblossom.. You yourself said you as a family can't really afford to stay in the rented bigger house.
If you move back you'd have more money and your other children would get some benefits specific to them.. Like near friends.
Your dd can and is managing an adult relationship, a job, and has saved for what sounds like an expensive holiday... I understand your her mother and want to protect her from life stresses but maybe she could manage a bit more independently.
It is really not a choice between her and other children but a balance for everyone.
After all you and dh and dc are not all on a luxury holiday arw you? Cus you have to spend money on renting house big enough so dd has en suite and her own space.
If she finds having her own space so important and likes being left on her own she could have used saved money for her own flat?
Could you convert the loft into a bedroom with ensuite?
Did you not read the update? They are moving back into their house!
If her preferred option is to stay with your DM, and you seem to agree it would work, could her stay there be on a temp basis initially while you do up the house in such a way as to give her that private space she needs?
I would imagine being there during building works would be difficult for her?
If after that's done she still can't bring herself to come home you could look at moving (having added value to the house) or maybe the time will have let you all settle down to a 'new normal' and she'll be better for being that one step removed from home and having a stepping stone towards independence?
^^Just this. So many people not seeing the bigger picture.
I can't count the number of times over the years I've said "if this was a physical disability we wouldn't be having this conversation".
It's utterly exhausting - people don't get the way ASD affects an individual or understand what's going on beneath the surface.
It does read as though she has the life of Riley doesn't it - it really isn't that way but I have lots to take away from the thread.
I need to get some support for myself so I can move out of crisis management and start strategically allowing her more room to make mistakes and learn from them. Moving out in 8 weeks to fend for herself is too extreme though just yet.
I appreciate all the views and opinions, it has really helped me to think it through.
I really am a very nice Mum to all of my kids though, I need to reiterate that one!!!
By 'better' I don't mean get better as in ASD is something that's to be cured, I meant better as in her depression and feeling secure.
Sorry, just re read it and saw how it could be read.
FFS. Me and technology are not a good combination... 😂 I was trying to quote @tootiredtospeak who nailed it spot on.
If the op had a physically disabled adult child who could independently go to work, drive a car and go on holiday but was insisting the whole family made sacrifices so she had an en suite bedroom my opinion Woukd be exactly the same.
And I don't think posters are wrong to point out that from the info given the other children of the family are not getting the same consideration.
They want to move back to the house, they want to be near school and friends, why should what they want and need not be as important as the elder daughter?
While it may seem as though it’s all easy peasy to do ‘normal’ things like go to work, travel etc for many on the spectrum, making sense of the constant chaos and managing sensory sensitivity is extremely draining and for those managing anxiety or with a past as difficult as the OP’s DD, those supporting need to give extra help and support to make sure their fragile state is stable and prevent relapse. Just imagine how stressful that is for a moment. This doesn’t follow normal patterns of independence. I kindly suggest watching this really amazing video the NAS made, which shows how challenging a simple train journey can be, and consider for a moment how difficult it is for those with this disorder and for a mother watching their child struggle to maintain a normal life:
@theredjellybean - we are moving back in 8 weeks, notice has been given to our tenant and landlord.
Hence the thread!!!
the other children of the family are not getting the same consideration
Well they don’t need it do they. You understand the implications if someone’s mental health isn’t managed right? We’re talking about an actual life here, not merely getting the bedroom you want. You really do not understand.
Cherryblossom.. The half way option of her staying at grandma's sounds an excellent idea. For both of you.
It would be lovely if she blossoms with a bit more self res and you know she is safe and I hope your mum can report back to you if things not going well.
And it gives you and your dp some financial breathing space.
And time to sell.. Or not... Your dd might find she likes being independent.. You don't know till you try.
I wish her and the rest of family best of luck, hope move goes well
Because they dont need the same parenting. They will find ways to socalise and see freinds they will be able to travel independantly, they will be able to have sleepovers at their friends they will cope. I have 2 others kids and they matter I love them so much and if they had the same struggles in life I will do all I can to help. But its unlikley as I am now I will be considering a future proof extension as they may well be with me forever.
You sound lovely and as if you have been doing such a good job under extremely challenging circumstances.
Personally I think that you have come to a really sensible conclusion.
I know this response doesn't really add anything; I just want you to know that you sound like a wonderful mother. I hope you are finding time and energy to take care of yourself too.
If the op had a physically disabled adult child who could independently go to work, drive a car and go on holiday but was insisting the whole family made sacrifices so she had an en suite bedroom my opinion Woukd be exactly the same
FFS Theredjellybean it's not about "wanting an en suite". The vomosridon wou
The point about mentioning a physical disability is that you can see where and how they struggle. That's where the comparison is - it's far more obvious when something is difficult and it's much easier for other people to understand.
This girl is on holiday and going to uni - many people are assuming this means she can live independently and is capable of far more than the OP is suggesting. This is what we mean when we mean invisible disability. Do you see the fact she's not able to go on many of the excursions and has hidden in her room? The sheer fact of going somewhere new has exhausted her reserves? That she can't manage everything simultaneously? Imagine your toughest, hardest job interview - you get through the day, and you cope. You're exhausted by the end of the day. Yes, you can do it but the idea of having that kind of day, every day is exhausting. That's kind of what it's like for ASD - many ASD folk really struggle to manage everything and you don't see the effort it takes just to cope with the basics.
Just because this young lass is planning on university and has managed to go on holiday does not mean she's ready to cope with everything. Maybe she will one day but she's struggled with many aspects of the holiday according to OP, and university will be a huge challenge too. She still needs support in the background but many people aren't seeing these invisible struggles because they don't know enough about ASD.
For the OP's dd the separate living space including the en suite met her needs. For another person with a physical disability it might be that having a bedroom on the ground floor met their needs. That might require adjustments by the rest of the family too e.g. losing a reception room downstairs.
But people seem more ready to accept that the physical needs should be met without suggesting that person is being spoiled or indulged .
Ummm... Too tired to speak.. The op daughter is away on a holiday with her bf.. That is abroad.
That sounds like sleep over to me!
Stop judging people with autism based on standards we set for neuro typical people. Things like trips ( with friends ) and work, only happen with support and adjustments in other areas to lighten the load elsewhere. My DD can go to school and have a demanding academic life, only if when she is home she doesn’t have an environment that triggers her sensory issues, so she gets time to relax and not be overloaded. If they don’t get that, it can have really serious consequences.
Yes course when I get into bed with my partner on holiday its exactly the same as a teenager sleepover and the associated minefield of social norms that come with it. If you dont want to get it then dont I dont care. But if the OP has said she installed a lift for her wheelchair bound DD it would not get the same reaction as the en suite has. People are seeing it as entitled and her other kids suffering for that. I think those people are idiots. Maybe that is you maybe its not.
Op, is your mother fully recovered from her health crisis? Is she well enough to cope with your DDs needs for certain foods etc?
Do you associate the old house with stress cherrytreeblossom ?
I just wonder as it must have been very difficult for you as well. In fact the last few years sound awful.
Have I understood correctly that the move back is temporary until you can get a new place? I think that might be good for you too.
I do feel sorry that your husband has forced the issues, although you think this was the right thing for him to do. It jumped out at me that you said you felt intense anxiety about the impending move. Hence me asking whether that was ‘only’ because of your concerns about DD or because of your own feelings?
I think it might come across to DD that it has been purposefully done while she was away, and it is not ideal that your DH did not wait until she was back so you could talk through the options properly with her. But I might have missed the reasons for this (financial?) as I am tired.
Hi OP. I have been through much of what you have been through - eldest took ODs and I used to get regular phone calls from school about her self-harm. I know that my youngest missed out on a lot - but she's had some counselling and since things have improved somewhat recently, I have made sure that the youngest gets lots of my time. It is unbelievably hard to get the right balance - I'm not sure there is a right balance when you are trying to save the life of one child. The eldest had PTSD, much of which was linked to a specific place. She had gradual exposure therapy and CBT which worked for her and she no longer has PTSD and is able to go to that place. EMDR is another option - but clearly it depends on the availability of services or your ability to afford them. I'm sure you are a great Mum who is just trying to do her best in an unbelievably difficult situation that most people just won't get. Try to look after yourself as much as you can - it takes so much out of you. Just know you're not alone.
You sound like such a great Mum.
I ish I had a solution - I get that the simplest solution to suit the family would be your plan but I also have a lot of sympathy for the additional needs your daughter requires adult or not. If your mum’s place would be suitable for her and your mum can cope that sounds like a good option. That doesn’t mean at all you are losing your daughter - she is 20 so under other circumstances a young adult child would be moving away in some capacity.
I wish you luck. Don’t forget to take care of yourself because you sound pulled in all directions trying to keep everyone else happy.
Katarajean - I am dreading telling her and I am cross with DH for not considering the impact of making that decision whilst she is away.
It won't come as a complete surprise though, the couple of days before she left I dropped it into conversation that whilst she's away we might have to give notice. She just completely shut me down and said "bad things always happen when I go away"
(my step mum was diagnosed with advanced cancer and weeks to live out of the blue whilst she was away on her last trip away)
I can't clearly think how I feel about the house, so much of it is clouded by her feelings, I find myself saying to friends and family "Was I happy there? Did I like it?"
I can remember feeling desperate to solve the bedroom situation and haven't particularly MISSED living there but when I think about it, it is a nice house in lots of ways and full of happy memories as well as the awful ones.
We havent made a firm decision on what we do next, although I think sell and move as quickly as possible might be the best thing.
DH would like to extend it and solve the problems with it and keep it.
I feel so very sorry for you, because I have one DC diagnosed with ASD and one DC who sounds quite like your DD in the needing to recharge in her own space way. Both very much need their surroundings to be what they know and feel comfortable with to function and thrive. In a different way, I have invested an awful lot in making sure DC with ASD can manage, but without all the additional awful and sad circumstances you have. I do think if you are the primary carer and in this case the only biological parent, it does mean you are the one with the insight and knowledge (both a privilege and a burden, burden in the sense of being the one who has to work all the logistics and support out). It takes an awful lot to get to a stage where things ‘work’ to then have the rug pulled from under your feet.
Your DD is doing very well, and all credit to her and you for that. I think you can emphasise that without minimising the challenges. I do think graduated support to her independence is a good thing in theory, although in practice that will take time and setbacks. Do you have a sense of where she wants to be in five years time, say? You do not need to put it on here, but in terms of longer term goals. It might be helpful to have a sense of going forward rather than back. I mean, if you have a clear idea of goals looking forward then it might help her see there are alternatives to the abyss of the past. If you are traumatised from the past, that is more difficult to do.
I want to suggest the National Autistic Society or similar if there is anyone local to you, but I found them not at all helpful (partly because they told me they only support adults). However, having some strategies in place might be helpful - to both of you. Even how to reframe things from ‘bad’ to ‘necessary but with issues’ in for DD towards proactive ways to address the issues.
I do think also it would be helpful to have a sense of what you feel and what you want, and agree with the posters who have suggested counselling for you. You have been through an awful lot. It sounds like there might be some tensions coming up if you and DH have different views on the house, equally these might resolve with time and practicalities and other opportunities you are not yet aware of. But having a sense of what is important to you is important, I think - so it does not become DD on one side and DH on the other.
I do not know if any of that is helpful but I am in awe of what you have been dealing with. Be proud of yourself but also be gentle with yourself. You are doing your best and you will continue to do so but do not lose sight of your own needs.
Thought Id give an update - we gave notice to our tenants and have given our landlord notice.
We have around 5 weeks left until we move back in.
DD still adamant she can't go back.
Is the plan still for her to go to your mother, OP?
Sorry havent been back to update this thread.
Unfortunately - with a week to go before the move amongst other factors DD took an overdose last week.
Im off work taking care of her and trying to pack up the house.
Very stressful situation.
I only found your thread today and so much resonated me as my dd is very similar, only slightly younger. I think you’ve done a brilliant job trying to balance the needs of everyone in your family, and I was so sad to read your update. Just wanted to send a big hug and my best wishes to you and your dd.
Another newbie to the thread- handhold for you, OP. It sounds horrendously stressful. How is she?
DD is ok, she is up and down still 3 weeks on but is definitely more stable. She has been signed off work which I think has taken the pressure off enough for her to be able to cope with the idea of moving a little better.
We move in on saturday. Unfortunately when we got possession of the house back the tenants had RUINED it, so we have had 10 days to basically renovate whole house including new bathroom, back door, windows, internal doors, flooring etc - VERY stressful!
BUT I have been able to prioritise making a brand new room for her - she was very negative at first but its really coming together and looking lovely.
Yesterday we went to IKEA and (spent a fortune) got her furniture and things and she seems to even be slightly excited.
Fingers crossed the next few days go without a hitch!
It sounds like you're doing a great job, OP.
Your family are lucky to have you.
Yay sounds like everything's going in the right direction OP. You really sound like a lovely supportive family. Good luck going forward!
I'd let her move out. She might appreciate the financial choices you are having to make, a bit better then.
Sounds like you are doing an amazing job OP
OP you will all get through this
You sound like a great mum.
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