DD says everything in this house revolves around her brother and I don’t know what to say to her

[Bettyprime]

I’m a single mum to 4, DD13, DS10, DS7 and DD3. DS10 is autistic and needs quite a lot of support with everyday things, especially changes to plans and busy places. He’s not a naughty child, he just gets overwhelmed quite quickly and once he’s past a certain point there’s not much I can do except get him somewhere quiet and let him settle. I’m not really sure how to explain it without making him sound like a nightmare because he isn’t, but it can be hard work.

DD13 has always been quite independent and doesn’t ask for much. She’s into music and seeing her friends and mostly just gets on with things. I’ve probably relied on that a bit too much if I’m honest. Last weekend she wanted me to take her and a friend into town and then collect them later. DS was already having a difficult day and I couldn’t make it work, so she ended up getting the bus with her friend instead. She was fine at the time but yesterday she told me she’s sick of everything being about him and that she feels like she doesn’t matter unless I’m needed for something.

It wasn’t said in a massive row either, which probably made it worse. She was helping me put some washing away and just said it like she’d been thinking about it for ages. I asked her what she meant and she said we never do anything she wants because I’m always worrying about how DS will cope. She brought up a day out we’d planned in the summer that we cut short because he was struggling, and a cinema trip we’d talked about but never actually booked. I could feel myself getting defensive because I do try, and it’s not as if I deliberately choose him over her.

The awkward thing is I don’t have loads of help. The younger three’s dad is around but he’s unreliable, and I can’t always count on him to have them when he says he will. My eldest’s dad has her alternate weekends, but he lives far enough away that he can’t just pop over and take her somewhere. My mum helps if she can, but she’s got her own health issues and I can’t expect her to manage all four.

I know DD13 has missed out on things and I hate that she feels this way. At the same time, I can’t just pretend DS doesn’t have additional needs because his sister wants to go somewhere. Sometimes I can arrange for someone to take him or stay with him, but it isn’t always possible, and I can’t afford to pay for childcare every time either.

I did tell her she matters just as much as the others, but she said she knows I love her and that’s not the point. Which I suppose is fair enough. I just don’t know what I’m meant to say when I can’t promise things will change overnight. I don’t want her to feel she’s had to grow up quicker because she’s the oldest, but I also can’t magic up another adult to help me.

Has anyone else been in this position with siblings, especially when one child needs more support? How do you make the other children feel seen without making promises you might not be able to keep?

Gosh I feel for you so much. I really understand exactly where you're coming from, I'm also a single parent of DC of a similar age but I only have two (14 and 10) and the youngest is autistic. In fact it was a similar, calm, observant comment from the oldest that helped me decide to push for DD's diagnosis when he said to me 'you always do what [DD10] wants so that she doesn't crash out' - he was totally right, and was picking up on how much I was accommodating her so that her meltdowns didn't wreck the day.

Since then I've tried to make up for it. I also have little to zero 1:1 time with him but I'm not sure he wants that from me! However I do give him lifts where he needs to go, I manage it by constantly cuing up DD about what we're doing and having a constantly-available 'coping pack' for her of the kindle, noise cancelling headphones, dolls and snacks etc. I also make sure I stay up with him past DD's bedtime so we can chat or watch a show (his choice) and chat about it. I listen while he tells me about his football team and his favourite YouTubers and school gossip and what have you.

I'm giving those options because I get single-parent life, we are stuck indoors with DC, there is no one coming to relieve us. It would be brilliant if you could get a day out with her (perhaps do it the next time that the feckless father of the younger ones turns up?) but in the absence of that, just be present WITH her.

Oh and say sorry and tell her she has a point. There is so much power for a young person to hear, yes I am right, my mum has heard me. Even that will go a long way. Good luck, I'm sure you are a brilliant mum. Being single and having a DC with SEN is not for the weak and honestly, married mums on here with neurotypical kids will share their thoughts and that's fine but they are NOT living it.

I suggested social care assessments, but not flippantly. No, it isn’t instant or easy. Yes, many have to fight for it. But it is worth it and it is something OP should pursue. Other people struggling to secure support should not put off. Other people having significant needs doesn’t mean OP isn’t entitled in law. I say that as someone who has DSs who have carers/PAs (2 with social care DPs and one receiving a PHB for continuing care funding) and who has supported numerous others to secure provision.

Tough tits to all that every now and again
in order to meet the needs of the daughter -even if it all goes wrong she will appreciate the effort mum is making !

Some things can’t be put right. The daughter will always feel like this.

People have suggested about 10 things. All the suggestions have been shot down as stupid and impractical, either by OP or others.
What would your suggestion be?

Haven't read all comments but your daughter sounds wonderful. It's easy to get defensive when you are just doing your best but make sure she knows you are proud of her for saying something calmly and thoughtfully and you will think about what you can do to make her feel more of a priority. We have one with SEN and one without and it's really really hard so I do empathise.

She’s bravely told you how she feels. Noe you need to do something about it. Words won’t work she needs to see she matters too.

you need to make plans with just you and her and stick to them.

I'm not short sighted enough to think there is necessarily a solution to this. The daughter/mother relationship is damaged and unfortunately, while they are still in the trenches, the solutions are few and far between.

As @roaringdragon said, and I agree with, the OP should absolutely apply for respite. But it's not a quick or easy fix as some others are suggesting.

I didn't notice you offering any solutions; just pointing out that if the OP had a crystal ball 10 years ago, she'd have been better off. Wonderful.

I agree. On a completely biological and emotional level, I’d have loved 4 children. We stopped at 3 because I knew on a rational level that one more would be more than I could cope with. One of my 3 has a medical condition which is defined as a disability, which of course is the last thing anyone expects when they fall pregnant but it is what it is. None of us are saying it’s easy. And of course, once a child is here, you’re going to love her/him.

but no one should be trying to shut down reasonable/ rational discussion. As I said earlier, posts often crop up on MN from women saying they want ‘just one more’ baby and imo the most unhelpful replies are the ones which say ‘just go for it, you’ll love another’

Having children is tough, even without illness or additional needs. Many of us would find ourselves spread too thin with 4. I think particularly with the rise of social media and other pressures over the last 15 years or so, parenting has become particularly demanding and the teenage years are a hard time.

This bit really stuck out for me:
"I know DD13 has missed out on things and I hate that she feels this way. At the same time, I can’t just pretend DS doesn’t have additional needs because his sister wants to go somewhere."

But she doesn't just want to go somewhere, she's very calmly telling you that she's felt neglected (which you've pretty much agreed with) and it's about time, consideration and connection - NOT because "his sister wants to go somewhere".

You're being most unfair on your daughter. Don't just feel hate that she feels this way, you need to do something about it!
Make the other parent step up and look after his 3 kids occasionally to give your daughter what she also needs. One cinema trip in the summer hols wasn't too much to ask.
I commend your daughter, you're lucky she appears considered and helpful. The alternative is that she could be acting up which would be far harder.

The only realistic way to improve the happiness in the household is for your son to be the one to live with his father. That way he can have the one to one attention he needs, especially as his difficulties will no doubt become more pronounced once he reaches secondary age.
Your daughter and her siblings will benefit from having a mother that can show she loves them, rather than just say she does. They’ll have more attention, a chance to build bonds and a calmer, happier home.

A couple of days out isn’t go to fix this, radical change is needed.

Approach your daughter's school - they should be able to put you in touch.

I'm retired and in Scotland, but I recall that some of the young carers at our high school were helped and our pastoral team had some involvement with it.

Apply for short breaks with your local council. You might get some hours where ds goes off and you and the others can do something.

But HOW do you make another adult do something? You can't, apparently.

I asked her what she meant and she said we never do anything she wants because I’m always worrying about how DS will cope. She brought up a day out we’d planned in the summer that we cut short because he was struggling, and a cinema trip we’d talked about but never actually booked. I could feel myself getting defensive because I do try, and it’s not as if I deliberately choose him over her.

The thing is... I actually think you kind of do choose him over her.

You say he struggles and gets easily overwhelmed etc. Obviously that's hard, but ultimately, if you plan your family's activities around that, you are absolutely choosing his comfort over the frankly very small things your daughter is asking of you. Giving her and her friend a lift into town is such a tiny ask of you from a 13-year-old. Your son was having a difficult day, and that's obviously hard for him and for you, but sometimes he is going to have to have difficult days and he is going to have to be overwhelmed and he is going to have to be unhappy. That's life. That's life for all children, autistic or neurotypical. You can't eliminate any trace of stress from his life and he will never manage to cope any better unless he experiences these things sometimes. You cannot orchestrate everything around him, to the detriment of your other children, just because he is the one whose condition means he shows his feelings and distress in the loudest and most obvious ways.

I have a friend who was pretty much your daughter growing up and even now her sibling is an adult with a job and her own flat, everything still revolves around her sibling in her family, because that's the way its always been and it now appears to be too late to consider anyone else because her sibling has come to expect it and gets upset if things are different, which her parents still accommodate. It's left my friend with some pretty major self-esteem issues.

No I don’t think you’re understanding.

It is not in the best interests of the daughter to have a day out end with a meltdown and escalation from her brother.

Take his obviously challenging emotions out of it, the impact on hers is the problem.

If OP takes them on a day out, pushes him past the point of escalation, that will negatively effect the daughter because her day will have been in essence ruined by that, it won’t have been the day out she was looking forward to, and that’s where resentment builds.

It is not in her best interests to force him to comply to the point he has a meltdown. She will suffer consequences of that, until he’s learned to regulate, which isn’t an overnight fix.

OP you need to go back and have this conversation again with your daughter and this time you need to not justify, not excuse, not explain, not say the word "but" at all. Simply ask her to talk to you again about how she feels and this time acknowledge her feelings and tell her you understand how she feels without saying one word of "but I can't just leave your brother" She knows the reality. She knows it sucks for her sometimes. She wants you to listen to her.

Then can you carve out sometimes when it is just the two of you - even if it is a show you watch on tv when the others go to bed. When useless dad does finally take his 3 kids could you then say to her "I'm free - is there anywhere I can bring you and your friend or would you like to go windowshopping with me".

But the most important thing is to stop trying to justify yourself to her. She doesn't want to hear that. She wants to hear that you know how she feels.

It was always going to be difficult having 4 children even if your son didn’t have additional needs and even if you were in a loving committed relationship with the most amazing man and father on the planet.

4 kids on your own and adding additional needs into the mix and you’re fighting a losing battle.

I’m a single parent but I’ve only got one and she’s a similar age to your daughter so reading your posts made me so sad. I know she’s 13 but she’s still a little girl who really needs her mum. My daughter has no additional needs but she needs me so much. Yes she’s independent, she thinks she’s 21 half the time and likes hanging out with friends and getting on buses on her own, etc but she still needs lots of time with and attention from her mum.

Is there an auntie or a woman in her life that can spend one to one time with her regularly? It sounds like she needs someone who can spend time with her, someone she can rely on to show up for her when they say they will, who can be there for her as she navigates her teens and early 20s.

Your son is your number 1 priority and understandably so. But your daughter needs to be someone’s number 1 priority too. If it can’t be you, it’s about looking at who in the family (or family friends) that can be.

Controversial but… if it’s not a key school year or you can pick a day at end of term, can you play hooky together and have a mum and daughter day while rest of kids are school? If that’s your only way of doing it?

not regularly and obviously not if she has attendance issues.

emotional health and knowing you’ll do what you can to make a special time for you both could be more important than one school day

Yep. It's all well and good people on this thread saying 'what can she do' and 'you don't know what it's like when you have a SEN child' etc but the bottom line is the OP will lose her daughter. One of my daughter's close friends is in exactly this position, a little older but with a high needs younger brother and parents whose lives revolve around him. She will move away as soon as she can and she won't be back. She's a lovely girl but has mental health challenges which her parents ignore as they're too preoccupied with her brother. This is probably at least in part the cause of some of those mental health challenges.

It's just a shame for the OP and her daughter that the daughter ends up being the sacrificial lamb in all this.

You have not read my posts carefully then, because I did offer suggestions.
Meanwhile, your suggestion is that the OP can't do anything for the time being. Wonderful.

I think you're getting a tough time on here many people just don't understand what it's like with a special needs child - you have to prioritise them and it sounds like you don't get much support.

Can you carve out small special times - playing a board or computer game with her, watching a series together over sevedal evenings, baking or crafts? It doesn't necessarily need to be a big day out - sounds like these are stressful anyway!

Is he perhaps becoming worse as he knows you will pander to his needs and preferences?
I'm really not sure this is how it works.

The OP is getting a hard time on here, I think. She sounds as if she's doing her best in a difficult set of circumstances
(not the least of which is, surprise, an unreliable 'father'! Am I jaded, yes too right I fucking am; you read about these men every day on here.)
I have no useful suggestions but echo the one about respite.

I have a lot of thoughts about this as the probably NT sister of a brother who is ND. I was intensely self sufficient too - I had to be. I have no doubt my parents love me but my brother needed a lot of support and there wasn’t a lot of space for me. What ended up happening is I held it together until I was about 15 and then went off the rails pretty spectacularly.

I am now raising two kids - one is definitely autistic and I’m not entirely sure about my son. He’s growing up in the shadow of his sister’s needs but I remember that so I am very, very conscious about giving him 1:1 time and his own life too. It’s very different for me though - my husband is here and present and I only have 2.

I think you need to be a lot more proactive about getting support. Do you get DLA for him? Your daughter can go to a carer group and I think also there’s funding for carer siblings? If you had a bit of a financial cushion could you get some more support around you? Is there a club or similar for autistic children that your son could go to? There are some groups around us - my friend drops her son and uses that hour for 1:1 time with her other child. Start looking around for anything you can find.

Your daughter has been so, so brave telling you this. I never did. I just waited to fall apart. I hope you can find a way to help her.