How can I make this better for DD, what's happened?

[Fillyfrog]

I need some advice on DD. She is 11 and in year 7 of high school. Sorry if this is long..

I've always wondered if she had traits of asd - lots of friendship issues and sensory issues, but it was never a real problem until midway through the last year of primary. I think the pressure of SATS and realising she was leaving her comfort place and going to a huge new school really got to her and she became extremely anxious, zoning out in class, not doing any work, pulling her hair out, becoming mute, etc etc.

Ever since then she's struggled so much. I think we are finally cracking high school with lots of support from mental health lead and the senco- last week was the first time she's had a 'good week' in her words.

We had a lovely day planned today, easy morning, put the tree up, Christmas lights trail tonight. She started to get very stressed during the decorations bit, I turned the christmas music off Alexa so it was a bit calmer but then she didn't like the feel of the dust on the boxes of decorations, or the feeling of the fake snow on the tree. I got her some gloves to wear (I'm a nurse!) but she still wasn't keen. She ended up going upstairs and when I went up after a while she was lying on the floor just staring at the ceiling.

When it's come to getting ready for the light trail none of her clothes are right, she doesn't like her Christmas jumper from last year as its itchy. She has nothing to wear (she has absolutely loads she just has decided she doesn't like any of it anymore) then full on meltdown mode. Howling crying, saying she's ugly, she doesn't want to come, ended up swearing at her dad (will get her to apologise later, it's not acceptable) we're really late for the trail now but finally are on the way.

I guess what's making me so upset is she wasn't like this in any previous years. There's no way putting the tree up would have been too much for her, or going out to a Christmas activity. I just don't know what's happened to her it's like a switch has flipped and I find myself so sad for her and wishing she could be more 'chilled out'.

I'm trying to make life better for her but it's hard and I'm not sure how. If anyone has any advice I'd really appreciate it.

I think the difference this year is that she was already very close to overwhelm.

If you think about our capacity to handle stress as like a bucket filled with water. If your bucket is only half full, another few drops of water being added will hardly be noticeable. But if your bucket is already full to the brim, a few drops will cause it to overspill quite suddenly.

You sound like you might be putting a lot of pressure on yourself to fix things and make everything perfect? Even in easy times that's a high bar to clear! And that pressure might be filtering out to the rest of the family. If you yourself were a bit more 'chilled out' and accepting that this year things are different, it would likely be easier for you and for her.

Sometimes you just need to accept that it's been a crap, disappointing, stressful day and let it go rather than trying to force a fix on it. Let the emotion drain away without all the pressure and accept this is how it has gone this year. It doesn't mean every year will be like this, but can take the pressure out of the situation.

Thank you for your lovely reply. You're right that I probably am putting a lot of pressure on myself, everyone wants their child to be happy and I'm starting to realise that I can't really 'fix' her, no matter how much I try. It's not that I'm trying to fix how she is just tying to make things accessible for her and make it so she will enjoy them but often whatever I do isn't good enough!

I don't know how to help the overwhelm x

It’s overwhelm. She is at or beyond capacity and everything now is potentially the straw that breaks the camel back. The poor child is self harming and is in serious crisis. If she was an adult she would be signed off work. She is constantly operating in a high state of anxiety. She will be exhausted.

Are you seeking assessment for ASD?

This is the first year post diagnosis for my child. She has also transitioned to new school. Try and keep everything calm and as normal as possible, introduce decorations slowly, allow her to wear what she wants. Make she doesn’t want those things to be accessible, maybe she doesn’t want them. Plan lots of down time, familiar foods, exit plans.

When your daughter swore at her Dad she was in meltdown and not in control of her behaviour. You need to learn how to deal with melt downs - give her 2m space, don’t block the exit, don’t talk other than to say I’m here for when you need me.

Oh I didn't think you were trying to fix how she is. You just want to make things ok for her. I get that.

I wonder whether with some of the overwhelm where she doesn't want to do something it would help to sometimes just say "ok, that's fine" and let it go rather than trying to fix it. Obviously you have to be selective because otherwise her world will become too small if she avoids everything (and the avoidance will feed the anxiety and overwhelm). However, in the example where you tried getting gloves for her because she was struggling with textures, whilst that was a clever idea and clearly an attempt to help I do wonder if it inadvertently added intensity/pressure maybe? Perhaps she felt that she was then being watched and she had to be ok because you had gone to the trouble of finding gloves for her, and that all made it feel too difficult and overwhelming to try with the gloves etc?

Small stuff like that where it's disappointing that she doesn't feel able to participate this time, but doesn't matter in the grand scheme of things maybe you could just say "ok, that's fine" and carry on. You might then find that if the spotlight is gone and she can dip her toe in with things without it being noticed or being a big deal that she might feel less overwhelmed and more able to try. That would also give her some control over what she tries to do.

I know that you weren't trying to put pressure on, it's very clear you just want to help her feel calm and comfortable and happy. I am also someone who will want to fix things for the people I love, but I have learned that sometimes they just need me to hear them and be there rather than leap into action. That may be part of the answer here too.

She has seen speech and language and been observed in two lessons at school by the SEN service. I'm just waiting for the forms to start the referral I think, I'm going to ask again on Monday. However she is receiving support despite no diagnosis so I'm happy about that.

Thanks for helping me look at it from a different perspective, I think because this is quite new for me (been going on about 6 months I think now) I just keep trying to keep her happy but maybe I'm doing too much.

When she is in meltdown she just wants me however I can't really do anything to help her so it's difficult.

It’s such a learning curve for both you and you’re DD.

The book how to nuture your autism young person is good. There are a couple of good documentaries on iplayer.

Just being with her through a meltdown is enough. You can teach her breathing exercising when she is doing OK and she can eventually try them durring meltdown. For now doing the breathing exercises in your head when she is in meltdown, it’s coregulation.

It's so common for this to be the age when things suddenly become much more difficult OP - end of primary and GCSE's are two points when the wheels often suddenly start to fall off.

At end of primary school the difference in emotional maturity starts to widen, you suddenly start to realise how fickle friends can be, how they seem to have moved on from the things you all used to enjoy, feel like you're always on the edge of friendship groups etc - but at the same time you don't really understand why or what you can do about it. Then you start masking to fit in and copy all the things they like and do or you get left behind and both are really difficult.

I would say while she's struggling at school to keep things as boring and routine at home as you can. Going out and doing fun, exciting or new things might just be too much for her right now. I'd just keep everything quite quiet, calm, familiar and low key. Home is her safe space where she she probably just wants to chill and be able to be herself. When she melts down just be there for her and do whatever she likes you to do - stroke her hair, sit next to her, sit on the other side of the room and not touch her or whatever. Just be a calming presence, that's how you help her.

Remember although things are hopefully improving at school it may still be extremely emotionally draining for her if she is having to mask all day. She may also feel like she's hanging on by a thread to this improvement and that it might all go down hill fast again at any time.

Sorry I keep posting as I remember things which have been helpful to me. It take at least an hour after meltdown to calm back down. It’s also worth looking into shutdowns.

Thank you yes you're absolutely right. I noticed a really short piece of her hair the other night and I asked her gently whether she'd pulled it, she said yes. She said even though it's been a good week mum it's still really stressful. She said she goes to the toilet sometimes through the lesson and that's where she did it. It's really sad.

Does anyone know what type of support I can try and access next? Camhs maybe, or I am open to contacting a private counsellor/therapist that she can talk to. The only thing I can imagine that would make her calmer is not going to school which isn't an option sadly.

She needs adjustments in school urgently or she will end up in burnout and won’t be able to attend school at all.

You need to make an appointment with SENCO to ask for adjustments

https://autisticgirlsnetwork.org/knowledge_base/reasonable-adjustments-possible-at-school/

Secondary school is so difficult for neurodiverse children.

She's using so much energy trying to cope at school there's no capacity for anything else. Too much pressure and you risk her getting into burnout.

What adjustments are school making? A class exit pass and a SEN room to go to if overwhelmed are possibilities.

Try and reduce demands at home. You had the light trail booked so you wanted everything to be OK for that. Decorating the tree was perhaps something she didn't need to do if she wasn't enjoying it. Perhaps putting on a few baubles would have been enough for her.

It's all about keeping unnecessary demands to a minimum so the bigger stuff can be done.

I will do that. I think it's a fine line. She wouldn't want to stay in all weekend and not do or go anywhere.

At school so far she is having regular check ins with the mental health lead. She has a toilet pass, and a pass that allows her to go to the SEN hub at dinnertime as she finds the canteen and corridors so busy and overwhelming. I'm not sure if she likes the SEN hub though, she doesn't have any friends there and the others are older than her and not the most friendly I don't think.

My daughter is autistic and had just started Y7. She sounds very similar to yours.

One thing we have learnt to do is be very low demand when she’s stressed. There is no pressure to do anything apart from the very basics such as brush her teeth etc. It has made such a difference for us. I genuinely have learnt to have the patience of a saint whilst parenting her through the years, as anything else just makes life 100% harder for us. If I get frustrated or try and force her, it just does not work and everyone is miserable so I have learnt to let a lot of stuff go.

My dd is struggling with the environment at school too and they have been making adjustments to help her, but it’s still taking up all of her energy to go to school so anything outside of school is pretty much not happening at the moment - but that is ok and just what she needs right now. I would completely lower demands as it’s obvious that your dd is putting all of her energy into being ‘ok’ at school and anything else is just too much. It’s hard to balance, because my dd could easily get into the habit of never leaving the house or doing anything so sometimes I do have to get her out and about with a lot of encouragement when she’s feeling particularly bad. But she’s at a point now where she recognises this and knows it’s not good for her to be doing ‘nothing’ all the time. Even if it’s just something small like going to her favourite cafe for a brownie.

It sounds like school are being really supportive so that’s a plus. Is she going to be assessed for ASD? We ended up going private in the end, and a few weeks after her diagnosis we got a letter from CAMHS saying they weren’t progressing with her referral due to ‘insufficient evidence’ 🙄 Just something to be aware of as there still can be a real battle to receive diagnosis if you have a girl who doesn’t present as obviously autistic (ie in the traditional sense).