Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

She didn't manage work yesterday, said she'd had 4 panic attacks and that she felt like she was doing everything in slow motion. Need to chase camhs woman today.

Morning
Lots going on here hence my absence.apologies
Dd2 found out yesterday school would rather add 121 than allow redo year 12.shes about 6-7 month behind on coursework.cue panic attack....

I've posted a couple of times and have kept reading this thread, which I am so grateful to have found.
As many of you described the relentlessness of many of our situations; I've found this difficult to come to terms with. I think I'm a natural optimist and I'm starting to realise that from not just my own situation, but from all your experiences too, there is no quick fix, magic bullet. The situation is likely here to stay for us to manage as best we can. That gets me down on some days.
Today I feel able to post. We've had some good progress this last month.

Just a recap as I haven't posted for a while. Dd hasn't been to school (yr7) since just before Easter. History of anxiety around school. She had stopped eating for a little while, and stopped communicating with us. We've been accepted into the camhs system, we're awaiting brief work.

Last week she was diagnosed with adhd and she is now on a low dose stimulant which will increase, with reviews every 3 weeks. Her school have also agreed to fund a place at a farm that takes home Ed groups for 3 days a week. Both of these things feel like huge milestones.
She also had 3 days in a row of getting out of the house.
Today was meant yo be her first day at the farm, but she couldn't make it out the house. Luckily I had taken AL. Just hoping she makes it in tomorrow, but I've taken another days AL as otherwise we will both end up v stressed. 🙏

I feel her diagnosis answers so many questions, and I am fascinated by the strong link between undiagnosed adhd in girls and mental illnesses and eating disorders as adults.

@indecisivewoman81 we used to find having picnic food really helped get something in dd1s mouth. And not at all giving the food any focus, apart from please pass the .....

@AnneOfAvonlea great news about the 2kg. I really hope she keeps on same trajectory.

@MillyMoo1113 has your dd been to work since she missed a day? I think she's doing brilliantly to be able to go in when she's struggling so much.

@Stilllivinginazoo that's absolutely rubbish. Your poor dd. What difference does it make to them if she defers a year, yet it could make all the difference to her. Grrrr

I'm sorry she didn't make it to day 1 of farm putyourbackintoit

Thanks @Stilllivinginazoo it's deflating, but so important to stay nonchalant so she doesn't feel any disappointment from me. Tomorrow is a new day!

Another hand up for relentless.

DD1 has just disclosed to DH that she's self harmed to the point of needing stitches. Probably last night but maybe today when I've been here. They've gone to A&E. Fourth trip in six weeks.

DD2 announced last week that their pronouns are now he/they and they want this to be acknowledged at school.

I submitted an EHC needs assessment request for DD1 that is highly likely to be rejected.
DD1 started new medication this week which is making her really sleepy - I couldn't get her up until 10 today.

DH snores all night, every night since we all had Covid in December.

The dog woke me up at 5. Everyone else sleeps through it. The dog they all wanted and would do everything for.

This is week 4 of a 5 week leave of absence I took from work after DD1's last admission. I told her today about planning to return, stressing I am mostly WFH.

I love them all so much but this is eating me alive. They 'need' me to be there, to cook clean and shop but feel free to refuse all these things, criticise me for my choices around parenting/ working but truly don't really care about anything I need or feel.

I really want to scream enough with all this. I am so tired of absorbing all this and trying to be patient and understanding. I'm so fed up of hospitals and half-arsed CAMHS support and navigation between different bits of the health system while DD1 decides that she 'feels safe' in A&E.

I have sincerely thought about leaving but the possibility of DD1 doing worse to herself holds me back.

Really sorry for ranting but thanks for listening. Tomorrow is another day.

@teelizzy unmumsnetty hugs from me. I can completely relate. The mothers load, the emotional work is still a huge void in terms of equality.

I worry about dd going down the he/they route too. I feel the system likes to pin the anxiety on the gender dysphoria rather than the dysphoria being a symptom of their anxiety. Often the route cause lies elsewhere. For my dd it's adhd and being totally let down by the education system, which has turned to self loathing including hating her body.

I'm sitting in the garden waiting for her to redo her hair so I can take her to the farm. I tried to get her down for the solar eclipse but she went to the loo. She didn't even come out to watch a rather funny brawl between the dog and cat.

All the while, this is my second day of AL, dh went to work yesterday, went mountain biking in the evening and merrily went to work again today. Unfair! We both work ft!

Anyway, the positives are, our roses are blooming and they are so fragrant. These ones smell like Parma violets. I've had 2 hot cups of tea this morning, too.

put well done taking a moment to literally smell the roses,the effort of looking at positives in amongst a sea of crazy/stress does make a difference
Tee I'm so sorry things are so full on.my first thought is the lack of sleep- deprivation is a form of torture..could you get a short nap in(20 minutes keeps me upright) and could dh see gp about the snoring?
Dd2 refers to herself as they everyone she knows uses pronouns now,I can no longer differentiate reality and "trend" there anymore,so just try run with it
Teens are notoriously self obsessed and chores/doing tasks even if it occasionally reminds everyone things aren't done by a magic fairy and the effort it all requires

Sending hugs to all that need it

Thanks all. @PutYourBackIntoit ooooh that rose is lovely. Small pleasures.

@Stilllivinginazoo I'm with you on the pronouns. DH is even more flummoxed than I am.

Back home now. Neither DD has gone to school today. DD1 spent the night in A&E - DH took her this time.

DD2 upset - a combination of stuff that's happened at school and DD1's antics.

Dog up at 5.30. Pretty cute though hey?

CAMHS making noises about response team support. But agree with DD1s therapist that she's hiding a bit in it.

Zoo amid the relentlessness I hope you are managing to look after yourself. School providing 1:1 may help you in applying for an EHCNA.

Put beautiful roses. I hope you made it to the farm. Fingers crossed the stimulants and other targeted support help. Unfortunately ADHD (and DCD and ASD) in high functioning girls are often only diagnosed when they reach crisis point. It would be so much better for all if more energy was directed at earlier diagnosis. I agree about the gender dysphoria and anxiety connection.

Tee lack of sleep makes everything harder to cope with. I hope DD1's experience at A&E was better than the last hospital treatment. With more understanding. If the EHCNA is refused appeal, the vast majority are upheld. Have you had a carer's assessment?

We have had an awful fees days with DS1. The heat doesn't help, he hates it and his sleep is even worse.

jumpD's hates heat too

@1jumpforward2back

I think you are right about iask, the send advisory service paid for by LA, i dont think it is truly independent certainly got the impression from my meeting as was told several times "kent dont offer that" .
She said only ed pysch can request OT or SALT assesments which Kent will then consider but often turn down so to speak to ED Pysch but I had already emailed LA to request those assessments form part of ECHP assessment but have had no reply
Anyway I have today had phone call from ed psych for a appointment via teams on Monday , they arent doing face to face for the forseeable future, so will accept video call. So looks like things are finally moving.
I am trying to stay optimistic but really it sounds like there a lot of appeals/tribunnals going on.

Does anyone have any experience their DC being assessed by an evaluation provision officer? I think they check provision in place at school and make recommendation for DCs education but doesnt seem to be something that is freely offered.

Hope everyone is getting some sunshine today and a moment to themselves, DH out for another bike ride, Im about to cook tea and keep thinking I should just down tools whenever he goes out but then nothing would get done, he had completely forgotten about DDs appointments, feels like I am holding everything so @teelizzy totally understand and rant away. Try and get sleep , sleep deprivations is awful but I also took anti depressants when eldest DD was really ill with anorexia, its just took the edge off and made me calmer and more able to cope.

@1jumpforward2back it was medically straightforward so DD1 and DH waited 4-5 hours as they wouldn't deal with the wound until CAMHS had seen her. They gave them a side room and a bed for him so at least he got some sleep.

I had a pretty broken night too though at least at home.

She saw her counsellor today and has a scheduled follow up with the psychiatrist tomorrow. She's been pretty monosyllabic but hard to tell whether it's tiredness, hunger or irritablilty from the heat. She started olanzapine early this week which is definitely making her quite sleepy.

DH and I both think she is thinking of herself as an ill person and that is definitely how she is presenting herself to certain friends. I'm concerned by the fact that she's definitely exaggerating some things to them eg length of admission, treatment needed.

DD2 is looking pretty wan but ok-ish.

@Runnerduck34 yes with you on sleep deprivation. Had years of it when both DDs were small (neither liked sleep much before age 3)

@1jumpforward2back noted re the EHC needs assessment. I'm treating this round as a bit of a stalking horse plus highlighting the impact DDs issues are having on school attendance.

I should also say a big thank you to all you lovely people for this space, the hugs and the support xxxx

tee it's been as much a comfort running it,learning new things,and meeting others who understand how hard some days are

Zoo I wouldn't mind if DS1 liked other weather, but he hates the cold, rain, wind, lightening and thunder too.

Tee sounds much more understanding. Is the Olanzapine helping yet? Others seem to find the sleepiness eases once settled. DS1 tried it to see if it helped with his sleep, typically he's the one where it didn't make him tired, so we swapped back to Risperidone.

Runner "that isn't offered here"/"that isn't the way we do things here" is a line spouted by LAs who think they can make up their own unlawful policies. Sadly many parents believe it. It isn't correct about OT and SALT. IPSEA have a model letter you can send the LA to complain they haven't gathered the correct evidence. If they still don't reply begin Judicial Review proceedings. Also consider independent reports.

Other LAs call it different things but the evaluation provision officer will look at what DD's needs are, what the school is currently providing and whether it is working and support the school to offer further provision. It's aim is to support mainstream schools to improve their SEN provision. Be aware if you end up at tribunal the paperwork will be included in the LA's evidence so it's important to challenge anything you don't agree it.

A lot of parents do have to appeal, some more than once. However, the majority of appeals are upheld and sometimes the LA concede prior to the hearing when they see the parents are serious. It is much easier to sort a detailed, specific and quantified EHCP from the start than it is to try to tighten it up at a later date.

jump D's hates thunder and heat.hes ok with other weather although very cold does make him bit wheezy walking out in it!he likes it cold though because it's nice snuggling in warm bed/eating hot food etc.he tends go off food a bit as heat rises and he is already so slight we can't afford the calorie cut

Hi everyone

Love the dog teelizzy

Sorry you have had bad few days 1jump

Zoo - I hope things start improving for you soon

I spoke with school today. They had spoken to sendias about the fact dd has had ed diagnosis since the ehcp was rejected and they suggested we can ask for the decision to be reconsidered in light of this new information. So, we have asked if it can be reconsidered with a decision in the next 2 weeks so we still have time to appeal within the time frame of needed. Fingers crossed

Zoo I find getting DS' to eat enough when it's hot a nightmare too. I don't blame them because I don't want to eat a big meal when it's hot and humid either. Heat is the worst because at least with other weather it's 'just' DS1's anxiety that increases, but with the heat I have to also wrestle sports drinks and salt tablets down DS otherwise he turns into an angry, sobbing monster on top of the anxiety.

Anne I would submit the appeal now despite asking the LA to reconsider. That way you don't lose time as parents are getting October hearing dates but the LA can still concede. If the LA have refused to issue for DD's ASD and MH it's unlikely the ED will change their minds. Appealing now many help sway the LA to concede if they see you are serious.

@AnneOfAvonlea the dog cheers us all up and was a bit of light relief through the winter

@1jumpforward2back DD1 says she feels the anxiety is receding a bit so here's hoping. Sleep is definitely better or at least less of a focus.

She's finally grasping I think how all of this puts the rest of us through the mill. DD2 was much more upset last week than on previous occasions - she's a pretty mature 12 - and I think that got through to DD1.

LA SEND called this afternoon looking for consent. So at least that hasn't gone down a hole.

Hi everyone, just checking in. Slightly cooler here today so hope you and your DC are managing ok.

EHCNA deadline at the end of this week for DD2. Call me cynical but two different youth organisations got in touch last week out of the blue to offer support with post-16 transition for DD2 and I can't help but wonder if it's a ploy by the LA so they can say support is in place if we accept. Would they stoop to this level?!

We found out a few weeks ago that school were unable to find sufficient evidence in any subject to award any GCSE grades for DD - shouldn't be surprised as she has been ill for the whole of year 11. A small part of me had hoped that year 10 work and decent mock results could have helped achieve a couple of passes.

DD2 very anxious and mood low despite 6 months on Fluoxetine (currently seeing psychiatrist but waiting list for therapy has been lengthy - told we are nearly at the top of the hill but don't know how high it is!) She has left the house a handful of times in the last 8 months and 4 of those times were for medical appointments.

I don't think she will be able to access any education without an EHCP. Think it will need to be online GCSE's and perhaps with mentoring alongside therapy. But it all depends when therapy begins and how she responds (and the LA agreeing to meet her needs).

I like having a plan and following it and I hate this feeling of limbo. I realise there is no "quick fix" and DD2's mental health is the most important thing at the moment - education can follow when she's ready and well. I suspect it's going to be a slow process.

Sorry to hear that @MuddlingThroughWithoutAClue, I'm new to secondary but I have to say I'm surprised that as your dd1 did mocks that she wasn't awarded any gcses. How is she feeling about it?

Your dd2 is in a similar situation to my dd1. She had a few episodes where she got out of the house when she first started on stimulant meds, but I couldn't get her to the new provision at all last week. We'll try again mid this week. My work is hugely suffering with all the time off, and so I'm working evenings snd weekends and still can't catch up. Then I berate myself for feeling sorry for myself when it's dd with the insufferable anxiety. Vicious circle!

I'm guessing I need to get my head out of the sand and start the echna soon. Was sort of hoping school would start the ball rolling.

@PutYourBackIntoit - sorry, I was unclear - mocks were year 10. It was a stretch to think that there would be sufficient evidence. DD2 asked me to leave her alone after I broke the news to her and hasn't really talked about it since apart from when she realised she will have to take actual exams rather than teacher assessed. She finds it difficult to talk about the future.

I hope your DD1 can manage to go to her new provision this week - farm? You say she managed to leave the house a few times recently after starting meds and hopefully she will again but I understand the frustration and upset when DC seem to go backwards. Psychiatrist reminded us earlier to treat each day as a new day and try not to let a set back take away from positives achieved previously. Also very small steps for DD2 to achieve going out eg standing outside door for a few minutes every day and gradually going a bit further every few days when able until hopefully after a few weeks being able to go a couple of hundred meters and back down the road.

It's stressful when you feel stretched in all directions. I'm fortunate that I work part-time in a not-very-stressful role but I end up working later to catch up quite often after spending time helping DD2 during the day - I worry about not pulling my weight in my very small team. I work in a very male dominated area and suspect understanding of my family circumstances would be lacking further up the chain. I think
Mums in particular are very hard on ourselves.

The lovely people on this thread have lots of knowledge about EHCP's - I should have started the process a lot sooner.

muddling/put your back into it hindsight is mostly for beating yourself about the head.many of us "should've seen X,y,z/done something sooner" but we are where we are and we plod on following this course and making the best of it.and that's hard,but it's not your fault/nor anyone elses.its very difficult but you will drive yourself mad until you can accept this is the point you are working forwards from.and that's ok
Dd2 is freaking as school won't allow her to repeat year 12,she can access 121 but has been too I'll to follow online since October and now in a terrible pickle over sheer volume work needs to catch up on

Camhs are doing work with her for dd1 wedding.this weeks task was eat food prepared elsewhere.initially she had said we could pop new Waitrose cafe that's opened nearby but was too hard with idea mask free indoors on top food etc around strangers.in the end she opt Costa next door and we took breakfast to local nature reserve and were lucky enough to watch a bunny dust bathing and having a cheeky nibble on some grass which was lovely.she was so enchanted by the rabbit she ate her cheese toasty and the cinnamon bun we got for later,plus an iced peach tea when normally she drinks very little.nice to have a positive thing to report and be proud of!