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?

What a mature girl you have, well done her for telling you how she feels.

Disability is all consuming, and gets into every crevice of your life. We have a son with complex needs and we struggle with how little that means we can regard each other and ourselves - and we’re his parents in our 30s and 40s.

You should be really proud of her for opening up about how she feels, many adults wouldn’t or couldn’t.

I’d echo the things around groups etc, but what she wants is time with you. Carve it out, in stone, once a week. Unchangeable and guaranteed, just for you and her.

It’s not as simple as just teaching him that he has to do things others want, or that he has to cope with days out that aren’t exactly his preference. He can’t do that, and he won’t do it overnight. The only thing worse than a day cut short, is a day absolutely ruined when you’d been looking forward to it.

Keep her off school, send him to his dad’s, organise something when he’s in bed - whatever it needs to be, and use that time for her, and your other children.

I listened to happy mum, hapoy baby this morning with becky cheetah and she talks alot about being the forgotten sibling and how her parents Actions and defensiveness affected her
Might be worth a listen Op

Ultimately all you can do is try to listen and don't minimise her feelings. Find any little moments you can to prioritise each child individually and help them feel seen.

So the disruptive brother gets 'rewarded' by being given a pet? That might be how DD sees it

I work part time in a school kitchen so I’m not at home doing nothing, I do have to fit things around work as well.

He is in school full time yes but since starting juniors he’s really struggled, its almost every day now. We have more hard days than easy ones and the older he’s getting the harder school seems to be becoming for him. It’s not just when we’re out either, days at home can be hard too. Once he’s overwhelmed it’s really difficult to bring him back from it and sometimes we have to cut days out short just to keep him safe. It’s not him being a bit grumpy because he doesn’t want to do something, I wish it was that simple.

I think I’ve got so caught up trying to manage how DS is coping that I haven’t properly thought about how much dd’s missing out on. I could look at taking a day off with her, although with work and the younger two it’s not always easy to arrange. I’m not saying I can’t do anything differently, I just find it hard when people make it sound like I can make him manage if I just change my mindset.

Could that be seen as sort of 'punishing' her for speaking out and sending her away so OP can spend more time on her son (and inevitably, her siblings)?

Let DS father have the son and have some 1:1 time with your daughter. She doesn’t ask for much abs seems independent because she’s learnt to live like that. It must be hard having 4 kids to manage so I hope you get breaks.

I’ve no doubt the OP loves all her children equally. Most parents do. This isn’t about how much she loves them - and actually, loving them is the easy bit. The far harder thing is to demonstrate through how they’re treated that no child’s needs trump everyone else’s and that they are equally deserving of time, attention and nurturing.

I agree. Essentially this post is 'I have more children than I am able to care for.' That isn't the eldest's fault and she absolutely deserves more than she's getting. Her parents are divorced and her mother doesn't have time for her. That's a recipe for poor mental health.

Don't have four kids if you can't look after four kids. And yes you do need to factor into that decision that relationships end (especially if you're divorced already so know they do).

She probably knows he’s autistic, rather than just “disruptive.”

Not sure where the rest of my post went!

basically it said that although I do understand the situation, and my parents situation, it’s only now that I have my own children I realise what I missed out on. I don’t recall ever spending time alone with my mum on special days out and she never watched me do my sport as she was always with my sister.
My dad was/is great and was around so it’s also different to your situation.

I do wonder if it shaped my personality - I’m quite independent and cannot rely on people as I never got lifts etc growing up - mum was always waiting for my sisters school transport or sorting her out. I was/am a total perfectionist with work as getting good grades was one way to get attention at home and I’m still a people pleaser, which is not always a good thing.

I know children have different needs but I make a conscious effort to share myself across my children now and show interest in all of them. You need to do the same.

Could you not have a regular girls night in with her? Put all the others to bed, get a takeaway or snacks and watch a series or film together?

What does the dad of the younger 3 say if you bring up his unreliabity? Is he completely oblivious?

@Bettyprime I have two DC, similar ages to yours with DS10 being autistic. I very much recognise what you describe in terms of how the impact of managing the autism affects the whole family. I think people who don't deal with autistic children day in day really don't comprehend what you (and I) deal with daily.

I think your DD sounds wonderful, a really thoughtful and caring young woman. It's also great that she has been able to articulately and calmly explain her feelings to you, at a time when you were able to hear and understand her. I would agree with everyone else that has suggested useful ways to speak to her to thank her for telling you and to recognise/validate what she has said.

I use any INSET days where my eldest is out of school but youngest is in, to spend time with him as much as possible. I also have found an autism charity that runs holiday clubs with high ratios and with an understanding of how to manage autistic children. That's been great for getting some one on one time with my eldest. There may be something similar near to you?

If your ex is unreliable with taking his 3 DC, you could still allocate the time to spend with DD, but make it flexible so that you haven't booked anything in that needs cancelling if he doesn't turn up. But the time is still for you and DD, even if it's just going for a wander, having lunch out etc. I get a lot of talking done with my eldest by just going for a walk with him.

And so? He still gets the 'reward' of a pet

All you can do is validate her feelings. Agree with her. It's unfortunate but she's right. I think it's important that she knows that you know that it's hard on her and that you understand why she feels the way she does.

I don’t disagree with your description. It seems to be quite accurate.

but “do something about it”? That’s probably quite difficult, I suspect…

Agreed. And many negative posts will come from a point of not understanding the situation.

This is known as "glass child syndrome" where the "healthy" siblings of a child with additional needs feel invisible.

There is a Happy Mum podcast this week with Becky Cheetham talking about this.

I too was a "glass child" with a severely disabled sibling. Our lives revolved around her because there was only so much my Mum could do with us both. My dad was around, but because my sister's disabilities were so great, she wasn't able to work, so he worked all hours to try and make ends meet.

My sister's disabilities are much more severe which in a weird way possibly made it easier for my mum to prioritise time with me, as she was very much a plonk her in an armchair with some toys and she'll amuse herself kind of child! This meant that my Mum could play games with me, bake cakes, etc.

I do feel that my childhood was limited because of my sister, but I appreciate now, as an adult, that they were all just trying to muddle through as best as possible.

What made the difference for me? My parents were able to access respite care. It was only one break per year, in term time, but my parents then used to take me out of school for that break and we'd go on holiday without my sister.

If I were in your position OP, I'd be doing some day trips or days off with each of your children, taking them out of school for a day here or there, while your son is in school. My parents were lucky in that they had a very understanding head teacher who happily told my parents what the latest illness was that was going round the school to quote when they called me in sick! I know times have changed, but a day here or there isn't going to hurt, especially if it gives your other children a happy day where they feel special too.

It’s a dog, not a Ferrari, and it would live in everyone’s house.

I don’t think the issue is that she resents her brother for having needs, it’s that she’s struggling with the impact of them - which are two very different things.

From OPs post, the DD didn’t appear to have an issue with her brother at all. She has an issue with the attention she’s receiving, that can be fixed - his needs can’t.

Can you just… leave him? When I was an autistic kid if I didn’t want to go somewhere because it felt too overwhelming for me, then the rest of the family would just go without me. Like on holiday they’d go out for the day and leave me in the hotel room, or if they went out for a meal and I didn’t fancy it then they’d just go without me.

I realise that this isn’t really the culture any more, but it might be what actually works for your family. Your neurotypical children get to spend time with you and do normal family stuff that they enjoy. Your autistic child gets to stay home and enjoy peace and quiet, which they enjoy. Everyone is happy.

If your child isn’t safe to be left alone then I’m sorry, and I didn’t intend any offence. But personally, when my family left me (at a similar age to your son) I’d just be reading, or playing my flute, or watching TV. I was perfectly safe and perfectly happy. Much better than being dragged somewhere I didn’t want to be, getting overwhelmed, and ruining mine and everybody else’s days (which I did sometimes too).

And I’ll say upfront that as I am autistic, questions such as “what would other people think? They’ll think I’m neglecting him if I leave him at home while the rest of us have a fun day out!” don’t really register in my mind as an issue as what other people think is irrelevant, as long I’m not actually doing anything wrong. So while I understand that that’s how neurotypical people naturally react to things, I think this is one area where the autistic folks are actually less disabled than you are. Ask yourself who are the people who actually matter here? You, your daughter, and your son. Why on earth would you care whether other people have an opinion about it? Whatever works for your family, do that.

Does your DS's dad have parents who could have your son occasionally or are they as shit as their son?

Poor kid. I have no advice but she sounds like a lovely young person and what bravery to have been able to articulate that to you calmly. I hope you find a solution to give her the time and attention she deserves. You don’t get a second chance at these things.

Possibly. It would only work if it is what the DD wants and luckily it does sound like her dad is good and reliable. The only issue is where he lives. I really don't think she should have to move away though to live with him, she really needs her friends. He would have to move to her. Even if she didn't want to live with him full-time, doing week on/week off or her having complete flexibility of where she is staying would be beneficial.

At the moment her only option is to live where she lives, and she isn't being treated like a valuable or equal member of the family. The same issue will be repeated in a year or two when the 7 year wants lifts to friends or wants to do a hobby after school or on the weekends.

I would request social care assessments. A carer’s assessment for you and an assessment for DS’s needs by the children with disabilities team for DS. On their website, Contact has model letters you can use. This can enable you to have time with just your other DC. It can also look at having someone to help you take all DC out together where that is suitable.

Also, look at your local short breaks offer. There may not be anything suitable for DS but it is worth having a look.

Have you looked at things that can make leaving the house easier for DS? For example, some people, find a wheelchair/SN buggy helps their DC cope with other aspects of leaving the house better. Similar for sunglasses (even on non-sunny days), a big hoody with the hood up, ear defenders/noise cancelling headphones.

I would work to improve the EHCP. For many, ensuring you have the right support around the disabled sibling can mean, in the longer term, you have more time for other DC.

For DD, look at your local young carers service. What support they provide varies area to area. Some are much better than others. Also look at Sibs.

Yes I understand, I wasn’t trying to make it sound easy. I just mean that if you want anything to change for your DD the first step could be changing your thinking a little. You didn’t describe the consequences of DS being overwhelmed: whether it’s him wanting quiet time, which you could work with, or screaming/hitting, which you’ll want to go to every length to avoid.

Since you can’t change DS10’s needs the easiest way to help DD is to make her feel seen as often as possible, and it sounds like anything at all would help right now. She might leave home in 5 years time so even if it’s a day out with just her twice a year, I’m sure it would mean a lot to her.

I think it’s incredibly tough. I have one child with additional needs and my eldest struggles with the same feelings and feeling like she’s treated differently. I try to make sure I carve out one on one time with her and prioritise it. My son has an activity once a week and while he’s at that she chooses something low key to do together and I’ve found that really helps. I appreciate it’s trickier for you but I think just knowing they are the priority from time to time is really key.