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?

Shall we not imply a disabled child isn't "good"?

Young carers sounds like it would be excellent for your daughter. Please contact them they offer an amazing service. Can you contact social services and see if you are entitled to any additional support? For example a support worker for your DS who could maybe take him out for a few hours allowing you time with the rest of your children?
You are clearly doing your best and it is tricky. Can you make some 1:1 time with your dd when your DS is settled? Something she enjoys, a manicure, or film with popcorn?

Does he pay maintenance or take them out/to his place at all?

The suffering your SEN child will experience having to get on with it/wait/fit in while you prioritise your daughter will be far less in the long term than the damage to her playing second fiddle all
the time I promise you

It’s genuinely not that.

It’s uncomfortable for me to listen to my son scream a playground down because he doesn’t want to be there.

It’s uncomfortable for the public if he has a meltdown in a museum because I wanted to visit one.

It will be uncomfortable for OP’s DD if she looks forward to a day out of her preference, and her brother accidentally ruins it by escalating beyond recovery, so they have to leave and he’s still disregulated for the rest of the day.

It’s uncomfortable for us getting scratched because we went to Tesco and the lights are too bright.

Catering to an autistic persons needs isn’t always about giving them what they want for their benefit, or just placating them, it’s about us not wanting the ball ache of them escalating, about everyone around them not having to deal with the consequences, and about their siblings not having an event spoiled through absolutely no fault of their own.

I totally agree with @Mondaytuesdayhappydays. That could play out with her later in a number of ways.

She didn’t lash out in anger, she calmly told you how she feels. It was a hard truth to hear, but becoming defensive won’t help or change anything. Not acknowledging something doesn’t mean it isn’t true, or that it can simply be ignored.

I understand that this is a situation that isn’t going to go away, so she’ll have to come to terms with accepting it, but that goes both ways. You’ll have to come to terms with accepting how she feels about it, you, and her brother, and how she chooses to respond.

Some siblings like a PP take it a lesson in caring and step in to take over later on, but others deeply resent it and are motivated to get out and away asap.

She’s the easy one that you don’t ‘need’ to make an effort to prioritize, but you do need to make an effort to prioritize her.

I think it actually says something about the strength of your relationship and her emotional maturity that she's able to tell you how she's feeling. I grew up with an autistic sibling and life did revolve around him to a certain extent as it had to! You can't just dump an autistic child on a granny or friend because he's having a bad day and you'd promised something to your other child. Unfortunately my parents weren't emotionally available and I could never be honest about how I felt with them. I grew up quite lonely and sad. I am also kind, caring, a good mum and friend and resilient (I think)- there are definitely lots of benefits to growing up with a disabled sibling.

I would just be honest with her and apologise for how this affects her. Give her space to keep communicating how she feels. If something fun needs to be cancelled due to her brother's needs, apologise, thank her and remember to make it up to her. As others have said, spend time 1:1 with her even if it's something small like cooking together/watching her favourite show. Sounds like you're a great mum and trying your best.

I think OP people are bringing up you having 4 kids to help you appreciate your daughter’s perspective. It’s not only the SEN needs, it’s also the 3yo now taking up any ‘spare’ space you have left and the upheaval of family breaking up again still fairly recently. It’s more than your Ds needs that she’s having to live with.

If your mum has never been allowed to try to deal with your son she won’t have been able to develop strategies for this and he won’t be used to it. Is your mum happy to try?

Yes, but just because the dd’s feelings aren’t expressed through screaming, meltdowns or scratching other people, doesn’t make them less real. That’s what people are pointing out. Her response might be to withdraw/ shutdown/just get on with helping out because it’s what’s expected of her. And of course those responses are far easier to overlook. But it doesn’t mean she’s ok.

You’re getting a bit of a hard time on this thread OP.

My dsis has 3 children and the middle one has autism and a physical disability. He takes up so much of her time and attention that the youngest started playing up in school and when she was asked why, her answer was that she didn’t think anyone would notice because nobody notices what she does at home (she’s 6).
Not true but was definitely a reflection of her feelings.

I think you’re already supporting your DS as best you can but definitely make use of any outside support you can get your hands on. Look at Autism charities - I can’t remember the name of the one that helped Dsis but they provided training on helping nephew with independence and change and her on how to address/support him when he was having a hard day.

Dniece is part of a young carers and as a result she’s been on trips to the theatre, parks etc, without her brother, so she can just be carefree (not sure if your DD is the same but we realised niece always had 1 eye on nephew and would just quietly do things like open his drinks bottle or put his shoes on because she knew he was going to struggle, but it meant she never just relaxed).
It’s made a world of difference.

Also, I wanted to say, time with your dd doesn’t need to be extravagant. Pick her up from school early and go for a McDonalds. It’s only an hour but she’ll remember it and it gives her the chance to talk while is your sole focus. Then maybe use the inset day to do cinema and lunch.

It’s bloody hard OP.

Of course they don’t. I haven’t said they’re not real and don’t deserve attention. I have actually said the very opposite in my earlier posts.

What I was responding to is this idea that OP should make her son uncomfortable for the benefit of others.

It is very rarely for the benefit of everyone else’s ears, skin or headaches to willingly distress an autistic child. It would make it worse for her DD, not better.

You acknowledge what she says is true. She knows you love her. But you do not prioritise her. You can't and you acknowledge that, but what she is saying is true.

You need to really consider what will happen going forward. Your son will continue to struggle. You are risking losing your daughter because this will get worse.

What about when your daughter has events for finishing schooling? Graduations? Results days? What about if she gets married?

Your son will not cope being in this big busy loud room. She will not forgive you if you miss it. I know because my sibling is also autistic and my mum didn't come to my graduation because she absolutely insisted sibling come along because it was a family event. Autistic sibling did a runner before the ceremony and my mum of course followed. Same at my wedding. Sibling did a runner, mum followed. She did not see the ceremony, there are no pictured of us because she was not there. At every event I asked for them not to come or care to be arranged. Always refused. No one can handle them when struggling like she can.

She loves me but will never be there for me. I am very low contact. That is what you could have in your future unless you figure something out. Its small things now. They rapidly become much bigger.

Have you asked the council for an assessment? They may be able to offer respite, some hours where he attends a club so you can focus on your daughter. Have you considered taking your daughter out of school occasionally to do something with just her, even just a sofa day with popcorn? You don’t have to tell her in advance so you can pick a day that suits.

Please, whatever you do - do not add a dog to this mess.

I’m not sure I would have had another two children when one already had significant support needs🤷‍♂️

How do you 'make' an adult do something?

Of course you are victim-blaming, you're suggesting the OP is responsible for what another adult does.

Two things:

1. does your DS have an activity that he always wants to do? For mine it is reading and we always always have at least two books with us wherever we go. This had helped tremendously and meant we could continue doing the activity we do while he would read.
2. does he have an access card? If he could cope with an amusement park, you could go and point out to your DD that you get to skip the queues thanks to him. My DS was almost crying of joy the one time we went saying that for once his autism was bringing something good to the family (his words), his sister was grateful and still mentions it years later. It might seem superficial but things like this can matter to children.

Right, but they’re already here now. So what next?

Does DS10 go to school? What about DS3? I think I'd take DD13 out of school for a day and plan a cinema trip and day trip. She clearly needs some 1-1 time and if that's the only way it can work it will be worth it.

It boggles my mind how people comment so flippantly with suggestions such as "have you enquired about respite care"
"look into specialised babysitters / childcare"
"just tell their dad to do more"

Are you living in an alternate reality?

• Parents of children with the most challenging disabilities and learning difficulties imaginable have to fight for years for every scrap of social care help they can get. And even then it's appallingly lacking. You can't just pop in a request and voila!
• Specialised childcare is very likely far beyond the reach of a single mother of 4 who works part time.
• Useless fathers are ten a penny and I've yet to find anything social or governmental that can resolve it.
• Telling OP to take her daughter out of school for a day is becoming the new "cancel the cheque".

Push for respite short breaks and siblings groups

👏🏻👏🏻👏🏻

We’ve got a profoundly autistic 10 year old who gets 8hrs per week of 2:1 PAs but actually one of us has to go anyway because we’ve only got one of those PAs, and access to two holiday clubs over the 6 weeks, of 4hrs each.

There is no overnight respite, PAs essentially do not exist, specialist babysitters definitely don’t.

Ok @concertinacornflake You are going to be even more upset when I say that I think even having 4 NT kids is a lot.

I know of what I speak because I have a DD with a chronic illness. Because I stopped at 2, I was able to cope and will be able tp cope even if dad walked off..( he didn't).

The fewer kids you have, the more you will be able to cope when things go awry. Many kids these days have SN. This is not victim blaming . It's common sense.