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Parents of anxious kids/teens support thread(part 2)

991 replies

Stilllivinginazoo · 29/04/2019 19:54

Hi everyone
Our original thread filled up fairly fast so I'm offering a second one
Anyone who cares for a child/teen with anxiety can join us as a comment,or hang around
Post your worries,your tips,ask for advice,rant about your day -we understand
Also feel free to share any small victories

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Thread gallery
19
Stilllivinginazoo · 01/12/2019 20:31

one-step I'm looking for reassurance I did the right thing ..
DS has been quiet and "miserable"/withdrawn this week.hes had lots anxiety (more than usual)
I put down to having literally nothing but weekly camhs visit and now we have stressy stream visitors/proffessionals involved
He was ment attend brick church today but I let him stay home.he seemed really down and was saying he wanted a break from everything it's all too much.he has wellbeing cafe,O.T and tutor Tuesday,wed we see ed psyche,Thurs tutor.monday we have take dd1 orthodontist appointment so it's only Friday we aren't running around/having visitors.i feel he needs time to adjust and brick church is social event as opposed to "essential" - I agree he needs get back in swing but at present it's not top of list
Fully aware OT won't like it and will probably chew me out
Did I do the wrong thing??
FWIW we decorated their tiny bedroom trees today,put up xmassy fairy lights and he seemed bit brighter at sight little robin ornaments (loves his birds)dd2 and I put up in his room
He's gone up to watch dvd with youngest
I've also said as girls have earrings thru advent this year we will do a Xmas craft a day start tom,which he looking forward to doing things together.

Hope everyone had a good weekend

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AnneOfAvonlea · 01/12/2019 20:44

Hi Zoo
We find dd gets exhausted by routine changes and needs to recharge her batteries. However it is super important to push her to do those things otherwise she would never do anything and would want to stay in her safe space and do safe things with safe people all the time.
I dont know what your ds uses to recharge but perhaps identify it and use it as legitimate reward when he does these things. Dd is minecraft under a blanket, and cereal without me trying to get her to eat anything else.
I dont know if that helps you or not...but it's our experience x

Stilllivinginazoo · 01/12/2019 21:32

Anne fair enough
He uses our cats as soothers/Chalmers.i suppose gaming is his recharge,or colouring intricate pictures?
I just thought with it being Xmas too- house looks different,everywheres busier etc it wasn't a bad thing to cut him some one time slack(it's a monthly group,so by next month all the assessments for ECHP will be done and we are predominantly just doing tutor and OT)

How are things generally with you?

Dd2 saw thing on Instagram"time to switch from regular anxiety to festive anxiety" and tagged me into it.did make me smile though!

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AnneOfAvonlea · 02/12/2019 07:51

I get it. You have to pick you battles but I do find with anxiety that if you give in to it then it feeds it so good to have rules of things you always go to if possible.
Things are tough here. I think the increased might be starting to work and dd looks like she is about to go to food tech again without fuss since the adjustment so in some ways amazing progress. In others it's just more challenging.
I am exhausted. Looking for resources in the area that may be of support. It just feels like we are totally on our own. I guess maybe as we didn't get the diagnosis through camhs? Not sure. I have signed up to local NAS group and seeing some things drip through but they are all during the day when I am working. My hours are being cut short all over the place so I don't want to take any more time off. It feels like a relentless slog.

Stilllivinginazoo · 02/12/2019 16:39

AnneFlowerssounds hard lovely
We are always hear to listen

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1stepforward2back · 02/12/2019 20:31

Obviously I can't see the full picture with DS, Zoo. but from what you have posted we would have made DS1 attend Brick Church. As Anna says, by being told he didn't have to go, therefore giving in to the anxiety, DS1 would take steps backwards. He would be 10 times worse the next time he came to go. It's about knowing how far you can push without reaching crisis. I think your DS not wanting to go indicates anxiety rather than wanting a break. I would have reminded him how well he did last time, that it was OK and that you would do X (something he likes) when he gets back.

I hope the EP, second tutor session and orthodontist visit went well.

Anna, you can request a carer's assessment under the Children's and Families Act 2014. Also, an assessment from the Disabled Children's Team and they are required to assess DD under Section 17 (11) of the Children's Act 1988.

It may also be worth trying to get a referral to CAMHS. Even if there is a long waiting list and an insignificant amount of support at the end DD is then known to their service should you need more help down the line.

AnneOfAvonlea · 02/12/2019 22:31

Thanks 1ststep - what do are those assessments for? Sorry I am clearly clueless

Bad day today. The school in estimation presented not enough evidence to show the boy had done wrong. He said/she said. So dd is beside herself thinking they dont believe her and she is really scared, having flashbacks from the incident. I have told school I understand, but sked how they can help her feel more safe in light of this.
It's taken me hours to calm her tonight.

Stilllivinginazoo · 03/12/2019 05:47

Anne hope you got some sleepFlowers

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1stepforward2back · 03/12/2019 12:11

Anne, I am sorry your day yesterday was so rubbish. Flashbacks can be really distressing. I hope the school can help DD feel safer there.

The assessments are for support. In what form that takes depends on what your area offers and the outcome of the assessments - it could include things like short breaks provision or direct payments. They may also direct you to the local carer's service or local groups you may not otherwise know about. Here is contact's booklet about them.

DS1 has done brilliantly this morning. He spoke to DS2&3's HT, which is a big thing for him. I was speaking to the HT when DS1 had an opinion he wished to share Grin. Despite DS being blunt the HT was brilliant, inviting us into the office so they could give DS a sticker. It's brilliant when others acknowledge something small that is actually a big thing. DS1 was over the moon. Then he worked really well with the tutor too.

Amiable · 03/12/2019 23:47

Sorry I've been AWOL - the last couple of weeks have been horrendous. DD seeing a crisis therapist again - she has wrecked her room several times, admits to taking another small overdose, drinking make up remover and trying to drink nail varnish remover (but thank goodness it was too disgusting) threatened to hit me several times, refusing to talk to DH at all.... Do any of you know of any support for us parents? I just feel lost, no idea what to do. Considered calling Samaritans but don't think they are quite right.

Stilllivinginazoo · 04/12/2019 06:56

amiable do you have CAMHS support?(my memory is terrible,sorry)
MIND(there is a young mind too)
Try your health visitor?she should be able to signpost support?
The Samaritan will listen,and might be able to find out where you can get help.
It sounds like you certainly need someone there for you tooFlowers
I'm sorry things have taken such a bad turn.sending hugs,and we are here to listen

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AnneOfAvonlea · 04/12/2019 07:53

That's 1ststep. I dont think we would qualify for any support as we are financially secure. Although knowing what is out there would be useful.

Amiable - this sounds awful. I would call samaritans. Or youngminds have a helpline for parents I think. They might be able to give pointers to support for you. I dont think anyone can understand what a toll this can take on the parent carer. Please look after yourself.

I read something the other day about high levels of PTSD in parents of children with asd and I can well imagine it as I am on edge all the time and my dd is not violent. She is more in the submissive/depressed side which is also very hard

1stepforward2back · 04/12/2019 09:22

Amiable, I'm sorry things have deteriorated for you. Can you reduce access to items DD could use to self harm? We have things locked away, and at one point much more was hidden from DS1. Do you have a phone number for the CAMHS crisis team? You should ring them each time. I would take DD to A&E for the overdoses, however small they were. My pp about carer's assessments may be useful to you. Your own GP referral for counselling (NHS or private) may help.

Anne, just to let you know that it is only your income/savings/capital (not including your home) and half of any joint savings that are counted. Because I don't work I get some support, despite DH having a good salary and us having some savings.

katalex · 05/12/2019 11:14

Hi everyone. This is my first post on here. I've read through this thread before but things have got worse and I really need some support and just to get everything off my chest I supppose. Dd has had 9 days off school since September, mostly related to depression, stress and anxiety. Normally she is fine with just one day off but she hasn't been to school at all this week and I doubt I will be able to get her in tomorrow. I am so stressed and in tears writing this. I feel sick all the time.

Earlier this year I took dd (14 yrs old, year 10) to the doctor because she frequently felt depressed and admitted to having suicidal thoughts. He said it wasn't depression but low mood. He told her to exercise, eat healthily and have things to look forward to. Unfortunately dd hates any form of exercise, including walking, and rarely agrees to eating any fruit or vegetables. She spends most of her time in her room watching YouTube videos or TV shows. She also loves singing and does this all the time (apart from on the bad days). She's had plenty of things to look forward to (going to see Hamilton, Harry Potter Studio Tour, Buckingham Palace, trips to our local shopping centre - her happy place), it doesn't really help, especially once it's over. Dd tells me that having something to look forward to at the weekend doesn't help her get through the days at school (or 'Hell' as she calls it).

Over the next few months, dd seemed to get better. I have a feeling that she has mild SAD as she hates the cold weather and short days. I have noticed that she seems happier in the spring and summer and she has complained recently about it getting dark so early.

She started year 10 in September and everything seemed fine. She didn't have any time off in September. However, the pressure started to ramp up at school regarding GCSEs. They're already being given talks about revision and working harder. Dd takes this very badly. She has never been able to cope with even the smallest amount of stress or pressure. Even asking her to have a shower when she's tired is too much for her.

Dd is at a mixed comprehensive and she is in top sets for English, maths and science, despite not getting particularly high grades. She tends to get 5s and 6s. This year she has been assigned to triple science, which seems to be adding to her stress. There is a lot more content to learn and they are being taught at a faster pace. The teachers regularly tell them that they should be revising every day and one of them said that stress is good for them. This is probably one of the worst things that you could say to someone who suffers with stress. Dd has sat out of her last two science lessons because she just couldn't face being there. I have enquired about moving down a set to do double science and I'm waiting for a response.

Dd has lots of friends at school and even a boyfriend so socially, everything seems fine, although two of her friends have their own issues with anxiety and can be hard work.

The school has been really supportive. Dd and I met with student support just before the October half term and discussed all of her issues. She has been issued with a 'time-out card' so she can leave lessons if she needs to or she can go straight to student support if she feels that she can't go to the lesson at all. She has used this card a few times already.

I took her to the doctors yesterday to see what help she could get. For a while I have felt that there is a link between her 'down days' and her menstrual cycle. She tends to get quite tearful, normally just for a day, in the week before her period. The doctor asked us to keep a diary and, if there does seem to be a link, then she may be able to take some medication to regulate her hormones. I'm really hoping this is the case. It's heartbreaking to see her so unhappy.

I spoke to student support yesterday because I was so worried about her missing so many lessons. I thought if I could get assurance from them that she could just go to the lessons she likes and stay in student support for the rest of the day then it would help her go to school. They agreed to this but Dd still said she wasn't ready to go back into the school environment. I told her that the longer she stays off school, the harder it's going to be to go back. It doesn't help that she hates school. she has always hated school since reception. Not a day went by in primary school when she didn't tell me that she hates school and asked me why I made her go. It wasn't the school, she just hates being at school, being told what to do and when to do it etc. She likes her secondary school but she hates being there, hates being treated like a child. She likens it to a prison because they can't leave and they're told when to eat and when they can go to the toilet. She can't wait to leave so she can go to university and be treated like an adult and be able to make her own decisions. She has always seemed older than her years. People have often commented that she has an old head on young shoulders.

The school has offered some group therapy sessions. They ran a focus day last term about mental health and all the students filled in a questionnaire. Dd was flagged as needing this therapy, so I'm really pleased that this is going to happen. She has tried counselling before. She had one session but she said it didn't help and she ended up feeling worse than she did when she went in, so she refused to do any more sessions, even with a different counsellor.

DH isn't very supportive. He doesn't really get mental health issues. He's a kind of 'man up and get on with it' kind of person and thinks everyone else should be the same. He thinks dd's just trying it on and we should just force her to get up and go to school. He doesn't realise that this will just make her worse. He also doesn't like the fact that I am spending so much time with dd in the evenings and gets angry with me about it. I don't see how he thinks it's ok to leave an upset child alone when she just wants her mum. Ds (12) also comments that I spend more time with her, which is true, but what can I do? I feel like I'm being pulled in three different directions with everyone wanting my attention all the time. It's so emotionally draining dealing with a depressed, stressed child, that it's really not helpful when DH acts like this.

Thanks if you've managed to read all the way through my post, sorry it's so long. Even if you don't have any advice, sympathy is also welcome and any stories from anyone who has had a similar experience with or without positive endings.

Stilllivinginazoo · 05/12/2019 15:47

katalex welcome.it sounds like a heavy load on your shoulders at the moment.
I don't have answers,just a few suggestions..
Could she go in for a few hours and build back up to full-time?i hate to say it but will uni be different?it's still having to follow rules(to a certain degree) ditto on the workplace.her mindset is very negative(please do not take this personally,or as an attack.it truly isn't,it's just an observation) my D's is like this he can turn a great time into a disaster/mediocre experience and it's draining listening to doom and gloom all the time
You can't force her to engage but I really feel she needs counselling of some kind.it does get worse before it gets better

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Stilllivinginazoo · 05/12/2019 15:49

*hunt for the shreds of sanity.sorry about the typoBlush

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katalex · 05/12/2019 17:00

Thanks stilllivinginazoo. Part time is a good idea. I may suggest that to her if this carries on much longer. The problem is that she has such a negative association with the place (school = stress) that she doesn't want to be there at all. I agree that she needs counselling. We're lucky that the school has arranged some group therapy sessions which she wants to do.

She seems a lot happier today. She's been singing today, which is a very good sign. I'm dreading the talk about going to school tomorrow though. I just know that, as soon as I mention it, the sad face and the tears will be back. Anyway, I'll report back tomorrow. Wish me luck.

Stilllivinginazoo · 05/12/2019 18:00

katalex🍀🍀🍀🍀🍀🍀🍀

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1stepforward2back · 05/12/2019 18:57

Welcome Katalex.

"Old head on young shoulders"
This jumped out at me. Please read up on ASD in high functioning girls and women.

To some extent you do need to challenge DD - leaving her to remain within her comfort zone is not in her best interest. She needs support to be able to function in daily life. But, DH needs stern words, he wouldn't be saying she had to attend school with no support if she had a physical condition.

Forgive me if I am speaking out of turn, but your DS sounds unhappy with the current situation at home. If he feels he not getting attention it will ultimately lead to resentment and sibling rivalry. He could end up partaking in undesirable behaviour in order to get attention from you or others. We make sure DC all have 1:1 time with us, would that be possible for you? Given the choice DS1 would be by my side, or sat on my knee, all the time. But that isn't good for him or me, so sometimes he is left upset with DH.

University can be so much better than secondary school. The support systems can be better, and if the right university is chosen there can be more flexibility. Choosing the correct course (subject and method of assessment) and university is key. Can you reason with DD? To get to university she needs to get GCSEs. In order to do that, either with her peers or at a later date, she needs to get help for her MH. And in order to be treated like an adult she has to behave like one. All schools have rules you have to abide by - set times to eat, go to the toilet and leave are commonplace, even among workplaces. She needs to engage with support offered, giving it a good go. She can not know that counselling doesn't work after one session, things often feel worse before they get better.

Zoo, is completely correct. People with enduring MH conditions often see the negatives over all else, even when outweighed by positives.

Can you get her to take a multivitamin, especially Vit D? We have a SAD lamp but it doesn't really help DS1.

Getting 5's and 6's at this stage in Y10 would probably be top set in lots of schools, but I hope the school will let your DD drop to combined science since she's struggling. What else are they doing to support her?

Have you asked for a referral to CAMHS and applied for DLA?
Social care assessments for you and DD would also help. As would getting in contact with young carer's for DS.

If DD can not get back into school even with their support you should get her signed off sick and then the LA have a duty to provide education to those medically unfit to attend school. Alongside this you should apply for an EHCP.

My post reads harshly. I am sorry for that, it isn't meant that way and is no criticism to you.

Zoo, I am sorry DS is finding the OT visits even harder.

Stilllivinginazoo · 06/12/2019 06:37

katalex one-step has a LOT of experience in this and her posts are always a wealth of information,she's also fantastically supportive to us all(just so you don't feel she's harsh as advice can feel a bit like a personal attack)

I hope this morning sees things a little smoother for you.

One-step he has reach point he hates her.he hates feeling the constant hyper anxiety as she pushes him to challenge it.he doesn't read in comfort or support and thinks she enjoys making him upset
We had a set too yesterday with tutor.sbe bought nuts,screws and bolts,a canvas and glue gun so D's could do art.plannrd to do a heart shape and glue on bolts etc.she help him and was agree she do gun.he look clock after 20 mins ask is she leave soon.i reminded him we had chattedearlier,and agreed,that a minimum of half hour was nec to have a change enjoy /tackle projects she brings.anyways she caught his finger with glue.he screamed like was be murdered.she said it's not that hot.he start to pant and growl and she said if you feel it need to be run under cold tap go and do it.he was angry rest session simmering resentment.after 50 mins it was complete.she praised both time spent and his work and he stat rant didn't enjoy it.he grew more agitated and start get drippy nose he wouldn't wipe.she said I think he wants me to go now.see you tuesday.after he rant at me.he felt she should apologize (I might add she ask how finger was at end and he muttered ok)and she's like OT doesn't care try make me do stuff that makes me sad
I replied I didn't see anything inappropriate.he said she was mad at him and kept glance quickly up whilst finish project.i remind him she doesn't know him well and works with lots children that get cross and potentially violent so she was just assessing how you were behaving as she doesn't know you well yet.
He still felt slighted.was shaking and snot pour down face.i suggested walk around to control the shaking.he calmed s little.sister Cameron from school then and wanted snack-he had some then ask play playstation
At bedtime I asked are you ok.still thinking of bad stuff he said.i said well I'm super proud of how long you did today and I'm loving the art(it's a gift for me)and gave him a hug
He didn't settle nor sleep well.imtired....

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AnneOfAvonlea · 06/12/2019 08:31

Welcome katalax. I could have written your post except for DH. Goo back and read lots of my posts, as they might help you.

I am pulling my hair out as we literally make amazing progress one day and then takeb2 steps back the next. I feel tired and broken and down know what to do about it tbh as none of this is going to go away.
I need to do the paperwork stuff you have suggested 1ststep but I am just so exhausted.

1stepforward2back · 06/12/2019 12:08

Oh Zoo, I'm sorry. DS may have genuinely felt extreme pain. Look up hypo and hypersensitivity to pain in ASD. I'm with your DS that the tutor should have apologised. It was an accident but when my DS' were younger I spent my days saying, "We say sorry when we hurt someone whether we meant to hurt them or not." The joys of having 3 toddlers at once. The fact he completed the session is a positive though, even if DS can't see it.

Was the tutor mad, or can DS not read facial expressions and emotions? DS1&3 often misread emotions and facial expressions because they don't understand them. They often think people are angry when they aren't, they just aren't overtly displaying indicators of being happy. DS1 in particular thinks everyone is happy, sad or angry. He doesn't know other emotions.

You could discuss with DS, or ask the OT to, that sometimes people make you do things you don't want to do because they care about you, whereas someone in the same situation who didn't care would let you do whatever you wanted even though it's not in your best interest. I have used going to bed as an analogy. Parents make their children go to bed, sometimes when they don't want to because it's in the child's best interest. Or we hold you [DS'] to put your eye drops in even though you don't like them because they help you. You could use limiting screen time, eating vegetables, getting in shower as other examples.

Has anyone mentioned melatonin?

My posts stem from personal and professional (though a long time ago now) experience. Every situation is different so some of the suggestions may help and others won't. People can ignore if they want.

Anne, I often feel we go round in circles improving and regressing, getting nowhere fast. Hence my NC. As hard as it is I think accepting that is the way it is and it isn't your fault does relieve the stress slightly. Are you looking after yourself? You can't help anyone if you aren't.

Pick one piece of admin to work on at a time. Are there any local charities that can help you with the paperwork? There are model letters for some of the things I have posted - IPSEA and SOSSEN for educational matters. Contact for Social Care assessments. The Cerebra guide for DLA.

I need to reply to lots of emails this afternoon if DS will settle, he's been stressed this morning.

katalex · 06/12/2019 12:51

So, Dd is in a much better place. She seemed a lot happier yesterday and she sang a lot, which is a great sign that she's feeling better. It's weird because she seems fine most of the time and she has the odd couple of bad days every now and then, which makes me think it's hormone related. I know that the low level stress and anxiety is always there but she said that most of the time she can push it to one side and distract herself from it. Maybe the change in hormones each month exaccerbates it. I know we still need to address the underlying reason for the anxiety though so hopefully the therapy sessions will help with this.

Unfortunately I couldn't get her to go into school today though. She felt that she really needs the extra day to fully de-stress. Although I was really hoping that she would at least go in for one lesson, I don't want to undo all of the progress she has made in calming down. I'm quietly confident that she will to in on Monday though. She realised yesterday that she missed auditons for a school talent show this week so she has arranged with her drama teacher to do it on Monday. She was telling me last night that she wants to go back to school on Monday as she's missing lessons and she misses her friends. I have told her that I will contact the school on Monday morning and tell them that, if she is too overwhelmed by staying for a full day, then they can call me and I will pick her up. I think this has helped her. I'm also picking up her best friend from school today so they can spend some time together. I know that will definitely cheer her up.

1stepforward2back - I read a few sites about ASD in girls and women. I saw maybe 1 or 2 traits that would fit but most of it wouldn't apply to her. Thanks for the suggestion though. DH has accepted that his way of dealing with getting DD to school is counterproductive so he's backed off and is leaving me to deal with her. And don't worry, you're not speaking out of turn or being harsh about spending time with DS. I do worry about him feeling resentment. It's not all the time though. It's only really when dd is at her worst so, most days I make sure I spend time with him. I was with him for a good while last night which was really nice for both of us.

Dd takes cod liver oil with vitamin D every day but I think it may be quite a low dose of vitamin D. Do you know where I can get information about what is a safe amount for a 14 year old? I've tried googling it in the past but I could only find amounts for adults.

With regards to support from school - she has a time-out card so she can leave lessons and go to student support if she needs to (or go straight there if she doesn't think she will cope with going to a particular lesson). They have also arranged group therapy sessions which will start in January. They are currently triaging the students individually to see what kind of issues they have and then they will group them based on what type of support they need. They have also put her on a list of students who will be removed from any year-based assemblies/talks about making sure they knuckle down and revise for their GCSEs. They also ask them if they want to be first or last into the exam rooms or if they want to be accompanied by someone from student support. That's all so far.

AnneOfAvonlea - I will definitely go back and read your posts to see what advice I can find.

Thanks all. It really helps knowing that I have somewhere to go for advice or even just a hand hold.

1stepforward2back · 06/12/2019 13:36

Sorry to be a pain but, your DD has more than just a couple of signs of ASD.

  • High achieving
  • Putting pressure on herself/perfectionist
  • Appearing older than she is
  • Sensory issues
  • Problems with rules -- see PDA
  • Friendship group with their own needs.
  • Things 'falling apart' during teenage years.

I would be concerned she is masking a lot, which isn't good in the long term.

I think 400-800iu/day is considered the daily maintenance dose a otherwise healthy 14 year old female should have, more if treating a deficiency. You could check with a pharmacist.

Stilllivinginazoo · 06/12/2019 16:22

one-step I didn't feel she was remotely cross.i saw her look at him quickly a few more times it as he was obvs agitated it was checking he wasn't about to explode in her face I think.i rang them and had quick chat today.she was mortified he thought she was mad at him and said will talk to him tuesday.he mainly uses sad,happy,angry to describe emotions too
We talked about doing things we find hard to help us reach goals.he loves to learn new things and knows she will challenge him a bit but predominantly on a level of sit and doing work/tasks rather than put him in situations he finds hard and try teach him it's ok and that nothing bad will happen when he gets anxious distressed(which he's not getting with OT as as far he concerned bad things are happening if he's get in a state!)
We have TAF Wednesday
Dd2 starts mocks Monday so house is pretty tense
Fun two weeks ahead
I'm plotting in self care for all sessions.start sat with what will be highly unpopular no phones til after 3pm and only til 8pm to give dd2 chance study/revise,and other two chance engage in proper communication /play games etc

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