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?

Or at least get him to step up more and take her out, if moving not possible. You have some leeway there, it seems. Tell him how difficult it is.

@Bettyprime I'd be very careful with any conversation about living with her dad that you aren't at all suggesting that you want her to move out and see her less. That could seem like a rejection after her admission to you of how she's feeling. She wasn't asking for less of your time and attention, she was asking for more.

So what, you just give up?

You set the date in advance, remind them of the agreement, turn up with the kids as agreed and don't give up. Rinse repeat.

Depends if you want to let them off the hook and how much effort your'e prepared to put in to make it happen.

@Bettyprime One thing that hasn’t been covered in this thread is where the support is for you. I was surprised that you haven’t considered young carers etc, and I also noticed you said that you might not have applied for all the support that might be available for you/DS. That made me think that you aren’t tapped into any kind of network of support, and haven’t had anyone signpost you to useful resources.

You might benefit from seeking a local group of parents with autistic DC in the first instance, because they may well know of the local support services for siblings, and the kind of things that you as the parent could apply for. Someone showing you how to do these things having been there themselves is often by far the nicest way. Plus: they will Get It! The sheer relief of someone getting it can’t be underestimated.

All the best because this isn’t easy.

😀The reason I used capitals is that I was roundly criticised for telling OP to ask Dad no 2 to step up. Apparently it can't be done at all, and I am victim blaming.
I agree with your methods. But perhaps better for her to concentrate on Dad 1, as he seems more amenable.

@Bettyprime Your post has hit me head-on, because I was your daughter, my brother was autistic and as an adult it still affects me now, its like a gut punch.

Looking back, what mattered wasn't being told I was loved, because I already knew that. What mattered was having someone acknowledge that I'd lost things too.

The hardest part wasn't my sibling's needs, it was feeling guilty for being upset about them. Your daughter sounds thoughtful and mature, but sometimes the children who cope best end up carrying the heaviest emotional load because everyone assumes they're fine, they are not, they just realise there is no alternative.

The fact she told you calmly rather than in anger suggests she trusts you enough to be honest. I think listening and validating her feelings may be more important than finding a perfect solution. This doesn't make you a bad parent, you are trying to do your best and she can see that, but its hard being side lined all the time. Sorry, maybe I am projecting here but this was and still is my honest experience.

I think your daughter has finally found the courage to tell her you how lonely it has felt being the child who always understands.

And that understanding and being side-lined (without malice) is life long. They call your daughters situation being the "glass child". And it hurts.

Your daughter has become the family member who absorbs the disruption because she's capable of doing so. The difficult truth is that both children can be right at the same time. The son genuinely has additional needs. The daughter has genuinely missed out because of those needs. Acknowledging the second fact doesn't invalidate the first.

One thing I learned over the years is that children are rarely comparing what they get with some ideal childhood. They're comparing what they get with what their sibling gets. A child can understand intellectually why their brother needs more attention and still feel hurt by it emotionally.

Your daughter's examples are telling: The trip cut short, the cinema trip never booked, not getting a lift and having to get the bus. It's not really about any one of those events. It's the pattern she sees behind them. I suspect what she's really saying is: "I know he needs more, but I need to know that somebody notices what it costs me."

That is the sentence I never said at 13, but it would probably have been the most honest one.

Her dad might be more aware than you assume, because her weekends with him will be when she hasn’t got the pressures she has at home. If she’s got a good relationship with her dad, in some ways it would be surprising if she hasn’t talked about the differences in each household and that life with her half brother can be really challenging. I would encourage her to open up to her dad and see where that conversation leads. She will probably feel she’s being disloyal to you if she tells her dad that she feels overlooked etc but honesty is crucial, even if it’s difficult. There is time to make things better for your dd over the next few years but it has to happen soon - in 5 short years she’ll be an adult and you don’t want to lose her emotionally before then

@PrettyPickleexcellent, heartfelt post.

I would be cautious about suggesting she lives with her dad, even as an exploratory conversation, she may well hear it as "piss off and live somewhere else then" when that is the last thing you mean.

She may well need to feel heard more than anything else.

At 13 can she stay up with you for an hour when the others have gone to bed, even if it's just for an episode of a TV show and a cup of tea?

And some of the people responding have NO IDEA how difficult a dysregulated autistic child is to manage - are they imagining that he just sulks quietly because he doesn't want to do it, and would pull himself together if you told him to "muck in?"

Your DD was so brave to say this to you. My heart breaks for her. You have got to find a way to show all your children they matter.

I can see this is a hugely difficult situation, but everything about your opening post suggests you just want her to get on board and need less, rather than entertaining the idea you might find ways to address the way she is feeling (and not unreasonably feeling).

Nobody is asking you, for example to 'pretend he doesn't have additional needs because she wants to go somewhere' - she is asking you to find ways that this can work for her sometimes. She isn't asking you to 'promise things will change overnight' - she's asking you to try to change the way you do some things, over time. You use 'I can't' so many times in your OP - and I get there are obviously genuinely things you can't do - but I do think you need to think really carefully about what you can do for her.

thank you for explaining that 😊. I agree that dad no 2 needs to step up and I don't agree with those that say it's impossible. Dad no 1 can also help support his daughter. Maybe mum needs to look to see she's getting full benefit entitlement and financial support so she can pay for care for DS occasionally, or respite centres for an afternoon. I say this as a parent of 2 kids with ASD. I've not relied on benefits but have paid for a trusted baby sitter to give breathing space.

I’d also not suggest you mention living with her father. She may take it the wrong way.
And remember as well as everything going on in your family she’s still a teenage girl and even in the most average of houses/ families they come with a huge load of issues anyway.
Just see if you can carve out a bit more one to one time with her.

.... and to add. I didn't mean she should live with her dad when I said dad no1 can help support his daughter.

You're getting a really tough time on here, OP, mainly from people without DC with ASN, which is key: they have NO idea what life is like with a child with ASN. I just love the 'sort it out' posts, as if that's easy. And the 'just get him told' posts. I think these people have a sort of idea of everyone with autism being Chris Packham- that is not the reality for most of us caring for ASN children.

My youngest has significant ASN (autism, adhd & epilepsy) & it's a very hard life. I do think my older 2 DC had limitations on their childhood because of it, but there was little I could do day to day. I was VERY lucky that DS1 & DS2 had plenty time with their dad (ex DH) & DP & I tag-team & always have- both for day trips (mountain biking with him, other stuff with me) & day to day. It's much, much harder for you on your own.

Good suggestions for having allocated evenings when the rest are in bed - for a movie (even half a one)/ prog/ nails/ ice-cream/ music/whatever- and arranging a day together when your ex has the others, something flexible if he cancels, though.

DS1 & 2 were always v independent travel wise & used public transport across the city or cycled from your DD's age. But we're urban, & school was a 5 min walk both prim & sec, so fortunate there too. She'll need to compromise on the travel - so chats about what she can do herself are good.

My DS3 is now 14 & still a velcro child, so I know what you're going through. Hugs.

I would never normally say this OP. But if you genuinely can't get any alone time with her at evenings or weekends, I'd keep her off school for the odd day while you do something fun just the two of you. In this case I think that having that connection is more important than a 100% attendance record

@PrettyPickle I suspect what she's really saying is: "I know he needs more, but I need to know that somebody notices what it costs me."

Your whole post gives a great insight into how things might feel for OP’s DD.

It also made me wish that DD could read these posts from people who’ve been through a similar experience and who know what it costs her… I wonder if you might be able to share with her how you’ve sought advice on mumnset so you could show her some of the posts, @Bettyprime. I appreciate this might not go down well as she might feel her privacy has been breached, so of course ignore if that will be a non-starter. But there might be stuff you could direct her to online to show you’ve put yourself in her shoes and thought about what her reality is like.

I agree - but I do think she should encourage her dd to talk openly with her dad about her feelings. And as I said, she may feel she’s being “disloyal” to her mum if she does this which is why it’s important the OP lets her know it’s ok. So it’s not about any direct suggestion she lives elsewhere - which I agree could seem like rejection - but about her feeling able to talk honestly with her dad. If he knows how much she’s feeling sidelined at home, he may be able to help in some way (perhaps having her more in the holidays?) At the very least, it means she can be honest with both parents which is important

I don't think you want to go down the route of the only way she gets attention is being allowed to bunk off school! She can go to school and still feel loved and valued, if you put some work into it.

If she's invited to skive school to get some time with you I think that sends a really unhelpful and unsustainable message to her - and probably won't do her much good with her friendships, which are clearly important to her, especially as she's feeling a bit unseen at home!

This was my situation, mine are adults now. I made a very conscious decision when they were small that the other two were not going to be responsible for their sister. I made every effort I could give the other two some time just for them, I’d go and collect one from brownies on my own for example so that we could walk home and have a bit of time together. She still tells me she has lovely memories of us star gazing on the way home. I’d make the effort to take each one out one on one. It was difficult, they did both struggle , and I had a husband to help out. I appreciate you don’t have that, I think you have to take your mums offer of help. As adults all 3 are very close now and I’m proud of them all. You could try Young Carers, mine did and I’ll be honest that it wasn’t for them but it is worth a try. Your 13 year old has clearly told you that she’d like more of your attention and I do think you need to try, it’s very hard being the sibling to a disabled child in many ways.
What I will say is that I’m constantly meeting people in the medical profession who eventually tell me that they have a sibling with disabilities, I do think that although it’s very hard it can shape someone to become a very kind and compassionate human being. But don't underestimate the effect it can have on siblings.

Well it certainly sounds as if she feels like a young carer. The term doesn't mean that she is the one physically doing the caring but that having a disabled sibling impinges (massively) on her day to day life. It also sounds as if you don't really recognise this.
Talk to the SENCO or pastoral lead at her school. They shod be able to offer her support or refer her to the appropriate services. Just the recognition should help her.

I was your daughter. It’s good that she’s told you how she feels. Please praise her for this and encourage her honesty, so she doesn’t just end up becoming a resentful adult who isn’t close to you at all.

I would try and make sure you take a real interest in her, try and make time to ask her what book is she reading, what’s that song she just played, how did she get on with that school assessment etc. Ask her opinion on things. A lot of the time I didn’t need my mum to actually do stuff with me, I just wanted to be seen and valued.

You could also plan some one to one time with her, this will be hard with your son’s care and your other children but even if you could just manage a few hours to take her out for lunch or do an activity with her it would mean a lot.

Young carers are definitely someone you should contact, they understand the toll that having a sibling with additional needs can have on young people.
You should also start the conversation with DDs school because they should also be able to offer her some support. It is easy to underestimate the caring load, that she will have taken on.

It is likely that your DSs needs will increase as puberty hits and at the same time your DD will be going through GCSEs and a massively increased school workload.
She has told you that she feels she is missing out, and obviously you are trying your best in very difficult circumstances, but you need to listen to her and find her the support she needs.

You know she’s right. What are you going to do about it?

What do you mean by “DS was already having a difficult day”?
Most siblings of DC with additional needs end up being treated like second class citizens. You need to make a conscious effort to change that.
The fathers need to pull their weight.

What about her friends? Could you facilitate her having a really cool space at home and her close friends always welcome over. A room downstairs or her bedroom upgraded? Snacks, pizza nights, sleepovers etc

Otherwise you just will need to take her out of school on a day where your youngest is in nursery and make it work around your work and treat her. Even if it's drive through coffee or shopping together. Small things but quality time

You deffo need to make it intentional and tap in to her otherwise she could internalise feeling less than