Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

Hi guys
Just spotted we have filled another thread!
I started part 1 during the journey with my sons escalating anxiety
This thread is a non judgemental place to support each other
As parents and carers we recognise how hard,stressful,and often lonely,this unseen battle can be.others dismissing small wins as the norm for most etc
Please feel free to offload here,share your small wins,take the support and comfort this thread brings

always what does he drink?if he likes smoothies/milkshake then milk,banana and dollop nut or seed butter is a useful source of calories
In my experience the more he sees you fret tho,the less he will eat
Offer food but make no comment if it's not eaten

Yes he is in mainstream, it was a really tough decision. For him he goes to school to learn and that’s it. The local specialist settings sadly don’t have any set up for academics so we decided he would withdraw completly if he went there and wasn’t learning. For the first time he now has a small group of peers he is friends with in learning support which is great. I think he just falls into that “in between group” between mainstream and specialist.

What a nightmare zoo no advice but I hope things settle soon

sirzy thank you
Lovely he has some friends.ds still very unsettled and doesn't like anybody when they're in a group.theyre ok one to one with him but he can't cope with rowdy banter/throwing rubbers at each other and messing about!he sees school as for learning/a place to behave and they irritate him "being silly".he sounds like an old man when he says it🤣

That sounds just like DS! The little group he is in from what I can tell are all very similar to him in personality.

Ds had his CAMHS appointment yesterday, he was so low that they focused on this and his perfectionism instead of going into the fizzy bottle theory. So sorry zoo, nothing to report on this and I’m really sorry to read that this week has been so tough. I hope you’re ok.
They have arranging to get his blood levels checked. I’m wondering if this is just to rule out things like anaemia before they consider medication? What’s everyone’s experience with this?
The school have responded to our formal complaint and are back peddling massively. They wrote in their letter that it is fine for ds to have absences related to his mental health and now recognise his conditions. They are claiming that they miscommunicated regards the requirement of a consultant letter, as this was to access the specialist training team. (This was never mentioned). We have a meeting with the head next Thursday because they’re still banging on about the government requirements for 90% attendance. I can’t find this in any of the legislation that I’ve looked at. But alas, it seems as though they’ve had to step back from their threats now.
Ds is over eating massively at the moment, and I’m not sure what to do about this. CAMHS say, it’s not too much to worry about because he’s not overweight (that’s because next week he won’t eat anything so it’s a binge/purge thing that I don’t think they’re getting)
Sorry for the rambling update.

Runner write to the Director of Children's Services threatening JR. DD has been out of education long enough, the longer she isn't receiving any provision the harder it will be to get her back into education. Would it be possible for both you and DH to take 4 weeks? Alternatively, because DD is disabled, you can take individual days; if you took a couple of days each week it may be enough to keep DD ticking along until tribunal.

Mummy best practice is to rule out a physical cause, and if medication is going to be started baselines bloods should be done. The 90% attendance target comes from the definition of persistent absence - an attendance of 90% or below. Schools are assessed on their rate of PA. DS is unwell so it isn't your concern. If the specialist training team is what medical needs EOTAS tuition is called in your LA it isn't correct you need a consultant letter. If DS can't attend school the LA have a statutory duty to provide education.

sirzy Zoo sounds like DS3. He preferred home learning because he learn without the social interaction. He finds group work incredibly frustrating as he doesn't understand why others would want the, in his opinion, distracting, pointless social chit chat.

Always if you are worried take DS to A&E. Have you looked at the junior marsipan criteria?

Zoo sorry you are getting it on all fronts at the moment. DD3 drinking milk is a form of self harm. Would she listen to the GP or practice nurse? Is there somewhere quieter and less overwhelming DD2 can go in her frees, potentially with staff around to prompt her and help organise her work? I know you probably already are but it may help her if it is an 'outsider'.

The meltdown was multifaceted: I couldn't park in our usual place. Yes we are there that often there's usual area we park in. He has outgrown his specialist car seat and I haven't found a suitable alternative yet so we are just using the crelling harness and he's back to hating the car. It was a longish appointment seeing multiple HCPs, his central line was blocked and he'd had enough of their prodding and poking so when the dietician wanted to meddle (his words) he lost it.

Thanks so much for your help and support @1leapforward2back xx That appointment sounds to have been brutal for both of you….the things that a lot of parents take for granted like driving dc to places and parking up are often tricky and pressurised for us with our little ones.

leap that sounds very hard.i have no experience or ideas with these matters but offer a listening ear as always
I've convinced lil zoo to try d.free for the weekend as a "trial" to see if it helps.reminded her aged 6/7 she had to have swabs taken from infection in skin around her bum and how much that would distress/bother her now and also we don't choose dearer d.free options for fun!!
School email me last night.she can no longer have any choice/a gently gently approach but must attend and accept staff will send her home if deemed I'll enough(she disputes this to be untrue)and provide a notebook to write her feelings in(which she doesn't have to share) plus cut out her sweets(she defaults to these if won't eat)
I can facilitate a book,no probs.i will remove sweets as an option to appease schools mantra that sweet foods will mess blood sugars and make her feel sick but know she will not accept other choices and weight will drop off again.since returning dd1 house she refuses cake, biscuits,sausages,rice,couscous,potatoes ofalmost all kinds,broccoli,yogurt.(all accepted and eaten previously).it's endless and if I add something she doesn't want to a plate chance are she will only pick at the things she would usually eat
I'm worried she will withdraw and start superficial cutting again,but feel backed into a corner so just go have accept what comes

Today's I'm trying monkey see monkey do approach with dd2.using upbeat music to motivate and organise chores I need to do,planned time to do some self care which everyone can be part of (deep conditioning hair and sorting dry skin on feet/cut nails).some time as a collective playing a game or watch a film it may not go to plan,but it feels productive trying to formulate one!

leap that sounds like a nightmare appointment! Ds limit for appointments is 30 minutes, at that point he will get up and walk out the room thankfully most of the team know him well enough to understand!

Good luck zoo I’m not sure how the school thinks all those changes in one go is going to be conducive to her wanting to engage in school!

I’ve been reading the messages above. My experience is with my 17 year old daughter who has anxiety and panic attacks. She couldn’t stay in school during years 7-8 and did hospital education at home from years 9-11. She wanted to go to 6th form but has struggled with staying in school again and the school won’t let her join online lessons even though pupils isolating with covid can. She struggles with all aspects of going out, socially, medical appointments and won’t accept help or medication. She is starting to blame me as I have to work (single parent with little support) and can’t be available to support her all the time, though I try my best. Feeling really defeated as I can’t see how the situation is going to get better. School does make me feel as though I’m the only parent going through this but I can see this isn’t the case reading the above posts.

Does she have an ehcp jo4500?

Sounds like the 6th form are being spectacularly unhelpful. I wonder if you would be able to push for an EOTAS package that covers a virtual school for her to do her a levels?

Thanks very much for your reply, no she doesn’t have an echp but was under CYPS for 3 years until they discharged her, I re-referred to CAMHS as she was struggling but waiting for appointment since April. I’m going to look up the EOTAS as I’ve never heard of that. Why are school so unhelpful, they are not helping with her mental health as she feels they don’t care, teachers don’t send any work to her and she wants to learn!! So disappointing and frustrating

Wishing you luck too @Stilllivinginazoo. I also agree that I think school are expecting a bit too much all in one go there….

Welcome Jo
I'm sorry things are so difficult right now
Dd2 is also doing a levels and WFH not an option either at her school,which has caused lots stress
As harsh as it sounds(and camhs have said it to me,so I fully feel it too) at 17 we shouldn't be reassuring as they should be able to manage independantly.dd2 has found that way too much,so I encourage her to look at the logic(what's the evidence to say this is like this etc?).she gets angry with me still but i want her to be confident enough to manage herself and hoping this is an babystep towards that
This is my personal experience so I hope you do not feel I'm attacking you,we are a safe space that's non judgemental and I don't want to come a across in any way unkind
As a lone parent do you have family/friends to support you.the mental load is huge caring for anxious DC

Do you have other children?
Do you get even a few previous minutes to yourself?

Thanks mummy/sirzy
Well everyone's up
Lil zoo had crumpets(as did I and dd2,D's has cereal as he hates them)
Dd2 now on 15 timed minutes checking in social media then we pop out for a walk before getting on with some tasks!

Thanks, I do agree about becoming more independent, you do get to a stage where you can only advise, they have to be responsible for helping themselves too. Yes she has a sibling but their relationship has broken down due to her anxiety (sibling doesn’t try to understand and gets on with their own life). Her father doesn’t support, is just critical and although I talk to friends and family it’s still just me dealing with situation 24/7. But I’m struggling at the moment, if I get ill I can’t look after everyone else so I think I m going to have to try and look after myself too.

Jo4500 EOTAS stands for education other than at school, it includes the provision DD received in Y9-11. Apply for an EHCNA, IPSEA have a model letter you can use. One should have been arranged when DD was receiving medical needs tuition. That's not a judgement, navigating the system is hard and you were poorly advised. Unfortunately, the statutory duty to provide education to those out of school doesn't apply post 16, so you need an EHCP. The benefit of EHCPs is it can include other things as well as tuition. Does DD get PIP?

Zoo I agree with Sirzy, multiple changes at once is unproductive. Why the school think otherwise is baffling. I hope the weekend plan works. Can DD3 have different food items on different plates, so items aren't 'contaminated'?

Sirzy no need to be embarrassed. DS1 has been known to do similar. DS3 once suggested efficiencies to one clinic. When virtual appointments started DS1 disconnected whenever he had had enough. We had words! Appointments at the clinic we went to are often lengthy due to the nature of the clinic. The positive is fewer appointments because you see multiple members of the team in the same clinic and it's quieter as you don't wait in the waiting area, you go straight to a clinic room and everyone comes to you.

Thank you for your kind messages about the appointment. They managed to unblock DS1's line, a relief otherwise it would mean more intervention. I don't know what to do about the car seat. He's put on several kg over the last year and grown a few inches. It is brilliant progress, but has caused other issues. He outgrew his SN buggy which we replaced with a different one and a wheelchair (which he hates) but I can't seem to find an alternative to the specialist car seat. Any ideas welcome - he's 36kg and 158cm.

I am sorry, that is long and rambling, with terrible grammar.

Sorry about the nightmare appointment leap

Welcome Jo

zoo I still reassure way too much.

So, yesterday after a few days off due to possible covid I managed to get dd back in to school but with her negotiating that she did no work. Clearly school aren't keen on this. We ended up having an emergency meeting with the senco where dd told them how sad she was and she asked for some support with her mental health. I was very proud of her for speaking up. We have been waiting a month for a medication review by camhs so school are going to try and put some pressure on them for us. The head popped into the meeting too and also offered support so it was good but very draining.

Anne great news she felt able to speak up and ask for help💖
Jo I say it all the time,we can't run a mobile without battery power and we are the same.it is hard finding time whether it looks like a a bath,a walk,a few pages of a book or a quickly inhaled chocolate bar hiding from DC it all counts more than you realise until you stop doing it
I love to get outside and walk.ds and dd2 love some of the fab local green spaces we have.lil zoo has recently started want a walk about 6pm round the block with me.its dark and bloody cold,but she seems to enjoy it,chats and there's a few houses that are starting to add Xmas lights which she loves so it's deffo worth the trip!
I colour with D's,which is quite relaxing
Today I snuck upstairs and lay on my bed and read a chapter of a book which was a nice change

Well DH in his wisdom let his sister plus her DH stay for a couple of days. She's an expert of course ( has no kids) & Cross questioned me about ds last night and he overheard. She's 'advised' me on what to do - send him back to school!
DS is now refusing to talk to me & has spent all day in bed.
I've told them ( well her DH ) to leave tmrrw. If Ds is suicidal over this I will murder them

Oh @Fferny1 I’m so sorry to read your post. I’m feeling cross and frustrated for you! It’s maybe going to be a good idea to have a conversation with ds about it when they’ve left. Explain that you understand how he must be feeling because you’re upset about it too. Even if he doesn’t seem like he’s listening he will be. If he ignores you, just give him his space and say, that you’ll be in so and so place when he needs a chat or a hug. You’d probably do this anyway without me waffling on, but I just wish I could help and make this better for you both.
I hope they scoot off first thing…..blimey. Some people!!

FfernyI'd be having firm words with "d"h about letting them stay again and I hope the bugger off this morning early.totally unacceptable (even more so in your own home)
Agree withmummy about talking to D's,but I'm sure you already have

Thank you for your support @mummy & @zoo. Yes they left yesterday lunchtime.
I can't believe the sheer arrogance & total lack of filter of my Sil. She has become a domineering caricature of herself. Thank god her husband's such a nice man.

DS has perked up slightly after several hours under the Sad lamp yesterday. He says he wants to go back to school next week + we shall see....I think he's feeling lonely & isolated.

@Zoo & @leap you both give so much of yourself to help posters on this thread. Who are often desperate by the time they find this thread. In spite of a lot going on in your own lives.
Thank you, thank you ... we are all so grateful & wouldn't manage without you.
💖💖💖🙏🙏🙏

Fferny- it's amazing how many "experts" with zero experience are out there! Hope everything is calmer now.

Anne - That's fab news, I hope this week is also going well.

I second what Fferny1 said, thank you so much zoo and leap, this thread is a lifeline.

DD still withdrawn but is clearly happier without pressure of trying to go to school everyday.
However she is really struggling to leave her room, I'm trying to coax her out of her bedroom but she genuinely doesn't seem to see the point in going anywhere unless it's something she really really wants to do. So definitely not to walk the dog or pop to the shops with me or even come dowstairs and play a game or watch a film.
She chats to her older sister really happily in the evening which is lovely to hear but I just want her to leave her room! she's says she can do it if she wants to but really I don't think that's the case.

All gone quiet on appeal front and no news from school re health needs tuition.

Her therapist has said it may be worth asking for a medication review as she feels the setraline should have had a bigger impact, she also thinks DD has PDA - Pathological Demand Avoidance .

Does anyone here have any experience of PDA?

Also has setraline failed to work for any of your DCs and if so what medication helped them? Not sure if medication is the answer, she definitely improved on setraline, she is less withdrawn- she now sits up on top of her bed! she's near maximum dose but is still very very anxious leaving the house and will avoid doing so at all costs.
Any advice greatly received.