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

Hi all, hope you are all doing, kind of, ok. I agree that the support on this thread is incredible, especially since we are all going through our own personal nightmares.
We think DS has ARFID. Does anyone have experience of this? Do we get it diagnosed? Are there specialists we can see?
Sorry, I'm always asking questions and never seem to give advice!

scared Anne and leap I think have some experience there?dd2 isn't diagnosed but eats "safe foods"

I run this thread as when D's unravelled there was nothing in RL I could find,or had time to look for.i needed answers.mn was fab with advise on specifics but I really wanted a space for venting,comforting and just being able to allow others to know they aren't alone,so here we are!as years pass we gather experience of what works for us to share,leap brings a wealth amazing ideas and advise on education etc which I'm eternally grateful she finds time to share with those who find us.❤️

Utter fury last night when I discovered TA had pressured dd to do a 2nd exam when she didn't feel able. She should have said well done for coming to school and well done for 1 exam. But no. Dd says it is hard getting up every day right now...
I lost my head when I called the school. Oops. Senco due to have meeting with relevant people to resolve and make a plan but I haven't had an update so don't know if dd will feel able to go to school tomorrow.

Always scared- my dd has an arfid diagnosis. She was under a dietician for about 2 years which made no difference. Camhs referred to edc when she reduced all but a couple of foods and got to 71% of wfh. After being seen by edc she is now 75% but has been discharged. Happy to answer any questions

always imo it's always worth getting a diagnosis. DS1&3 have EDNOS which is another atypical ED, their's is complicated by a medical condition that requires a high calorie/fat/protein diet. They are 82 and 83% WFH respectively, the highest they have ever been. They don't have an input from CAMHS or the ED team about it, but see a dietician anyway as part of a medical team and have overnight enteral feeds. DS1's CAMHS team leave it the the medical team. Dr Gillian Harris and Dr Rachel Bryant-Waugh are experts in ARFID.

Runner it is the LA who are responsible for medical needs tuition, not the school. Some areas don't diagnose PDA, and will only state demand avoidance traits. Limpsfield Grange have some good resources. Sertraline didn't work for DS1. At 6 he started 25mg, increased to 50mg then 75mg which was the maximum for his age/weight. He swapped to Citalopram which was quickly stopped due to deranged bloods. He's also tried Fluoxetine previously too. Now he takes Mirtazapine and Risperidone.

Not surprised you are angry Anne.

Sorry, I'm being dumb. What does WFH mean, to me it just means working from home!

always weight for height (ratio)
Anne I'd be livid too

Lil zoo has been told she HAS to do GCSE french.this will be completewaste of time as wild horses will not make her do the speaking exam,thus making impossible to pass,adding extra stress when she struggles so much already
I've made it very clear to Hoy via email I am not happy

Hi all,
Can I echo thanks to the regulars who post and respond in such a caring and helpful way. I have been on a real roller-coaster the last week or so, and although I have been reading, I haven't felt able to post. Hats off to you for somehow finding the energy to keep this thread going and offering support to each other and to the people who find it.

We found out last week that DD(15) is self harming. So far superficial, done safely and with care. We had a really open conversation about it - she doesn't want to stop, she finds it really helpful. We talked about it being addictive, and possibly looking for other things that could give her the same release/high. Proud of myself for handling it calmly and without blame/guilt, but it's absolutely knocked me sideways.

On the upside we bought her a new exercise machine for her room, which she is using. The ADs are kicking in, I think (Fluoxetine - still on 16mg, going up to 20mg this week, but she is tiny and light). She asked for a new pet (we have dogs, but they are DH's more than hers). We researched and landed on another dog, but this time a very easy, laid back, affectionate (clingy?) toy breed. We have a plan to train it as an assistance dog (looked into this in detail before) and have even found a trainer locally to do this with. We are off to see a litter of puppies at the weekend, and DD is coming with us! She will stay at GPs house overnight, and will visit a complete stranger's house - which is massive!!

And another massive thing, is that she has asked to access online education to try and complete her GCSEs this year. She wants no interaction with anyone, even online, so it will be self-study, but she got one GCSE like this last year, so I don't doubt she has the capability. EHCNA application (IPSEA letter with strong support from GP, school, psych and CAMHS) is in with the LA, but we are incredibly fortunate in having a decent income and supportive family (who are well off), so we can access what she needs even without this.

So huge ups, but also scary downs. Strength to all...

Have you looked at the mind website bubbles
There's as ice there on self harm
Also nspcc website has some and a something wall- distraction thing
Lil zoo does superficial cuts when in a tizz.shattered my world,but in her case it's frustration at lack control and it ebbs and flows.shes a skin picker usually.i know saying don't do it doesn't change anything but looking for safer ways to express herself is important (I'm no use if it's deeper/less safe as thankfully we haven't ventured into those waters ...yet)
Wow amazing progress in other areas
Interested in idea assistant dog,do keep us posted how that goes for you
You don't have to post often.we are always here when you need us

Zoo- how ridiculous, hope HOY will see sense, sometimes you have to keep pushing, we had similar with DD, they had a procedure they needed to follow, but got there in the end.

Bubbles- that sounds so upsetting but you handled it brilliantly and thank god she can talk to you.
The other news sounds hugely positive so fingers crossed for a good weekend.

Anne, that’s awful. The lack of understanding and support in schools never fails to amaze me. No wonder you’re livid. I would be too. I hope today is ok for you both as much as it can be after something like that.
Welcome Bubbles. It sounds like you are handling things brilliantly and you should be proud of yourself. It’s so hard. Zoo is very good at reminding us all to be kind to ourselves. We need to be. Keep posting.

Thank you all so much for your support and help on this thread. It means so much. 💗 my posts are full of typos because I’m always so exhausted….today is the meeting with the head. I’m so nervous. Haven’t slept much lately and just hope I can get my points across without being a mess.
Take care everyone x

Zoo just to make you aware English Language GCSE has a Spoken Language endorsed component.

always eating disorder teams generally prefer to use WFH rather than BMI centiles.

Bubbles I would be wary of falling in to the trap of thinking you can fund support without outside help. DS1’s EHCP costs in excess of £100k pa. Whilst we could fund DS3’s as it costs significantly less, although more than the average UK wage, having it funded gives us more flexibility to provide additional support, enrich their lives further and save for their future care.

leap dd2 informed lil zoo last night< very helpful of her.sigh>
Mummy🍀🍀🍀🍀today.hope it goes well

Well big news here is school have agreed to put back assessment for ASD/ADHD for lil zoo.
Final nail in coffin was she's refusing to take sanitary protection to school as periods due but she's adamant even if starts will not use a toilet preferring to be potentially uncomfortable and embarrassed(despite being very very high levels social anxiety already)
Forms are now at office awaiting dd2 to collect them.i will need luck my moment to Tel lil zoo we are putting her forward for the assessment.initial camhs report over a year ago was to put her forward but ed team Said no need as makes eye contact and quashed it

*put in and assessment

Mummy - thanks, and hope the meeting goes well.
Leap - we definitely won't be letting the LA off the hook, and will go full throttle at the EHCP application, but at least for now we can afford things like an exercise machine, and the first year of online provision (school have already offered the LA online provision, but it focuses on engagement and attendance - not what DD needs right now)
Zoo - I can't believe that schools are still spouting the absolute bollocks about 'can't be autistic, makes eye contact'. It makes me really cross. For DD's diagnosis, I wrote a list of all the indicatiors of autism under the 'triad of impairments' plus a list of sensory differences. It really made a difference in the initial stages of getting through to the psychologist. DD was diagnosed in under 4 months.

Happy to post more about assistance dogs if anyone interested, and will keep you updated as we move forwards. We have an initial meeting with a trainer in a couple of weeks, so will know more about the process then. Legally, it is perfectly do-able - there is actually no legislation covering assistance dogs (not guide dogs), other than the DDA. Morally/ethically, there is a lot to consider...

Oh gosh I'm so glad I've found this thread.
DD is 15 in the New Year (Y10) has barely attended school this year, had long spells of not being able to go since upper juniors - but its only with hindsight I recognise her behaviour as anxiety. Seeing a private cousnellor as the threshold for CAMHS is so high and the wait so very very long. Probably some ASD in play, disordered sleep, rarely leaving the house, never leaving it alone, only with one of us or one trusted friend. I'm exhausted and the Local Authority starting to get heavy with us. Above all its just so sad.

Welcomethedefinitionofmadness
I'm sure leap will appear at some point and she's the expert on all things educational with some sterling advice
In the meantime let's focus on you for a bit.have you got any one in RL to turn to?(partner,friend,family etc?)
Do you have other children?
Please don't beat yourself up over what you should've recognised sooner.we all look back with hindsight and wish we did X,y,z but whilst hindsight can be a marvellous thing it tends to be something we can beat ourselves with and that's not going to change anything
We do the best that we can at that time.no one can ask more of themselves than that
Have you tried anything particular for the sleep?(that has massive inpact on how can cope with day to day stuff)does she eat well?
Please don't be put off by amount questions I ask!
This thread holds NO JUDGEMENT.its all about support and how we can help each other thru our experiences

thanks so much @Stilllivinginazoo

I am lucky to have a very nice husband, and 2 DS (17 and 11) who are both happy. My own MH has been shot for years (GAD, panic attacks) but I have largely been able to manage it till recently with lots of fresh air and swimming and yoga - though pandemic put paid to a lot of that.

Sleep - we try to get her off her tech at a decent time. But she will often be up all night. Eats well enough and keeps herself clean. Baths seem to be her hobby. And thankfully no signs of self harm. But she managed a day at school today, first time she'd left the house for a week and only then to therapist - it had taken her all that time to psych herself up. Home at 4, screamed for an hour and then went to bed.

I think she is masking her ASD and anxiety and that must just be exhausting

definition does she get tired?my youngest(14) has around one night a month she doesn't sleep at all and keeps going til 11om next night!
I'm pleased to hear you have a supportive partner,it's good to have someone in RL(but not everyone does,and that's ok as long as there's somewhere to let it all out sometimes).I hope you didn't think I asked about other DC in meaning are the also anxious(for the record 3 out if 4 of mine suffer in various ways,but I suspect they all have varying levels ASD.one diagnosed,one about start process)
Dd2(17) needs to decompress after being around people.she often plays loud music on headphones (to itch my brain she says)or burrows under covers and veggies out with favourite show on laptop

I also fine much splice in fresh air.im lucky I live near some beautiful green spaces and I love to walk as do most of my DC!

Welcome definition sorry things are so rough. masking is a real problem especially for girls.

Ds is plodding at the moment. We have had some massive meltdowns but today he managed to tell his 1-1 he needed to leave the classroom and they went to learning aupport instead which is a big step forward for him (

Welcome Madness, although welcome feels the wrong word since it’s a thread no-one wants to need. Does DD receive medical needs tuition? Does she have an EHCP? Don’t worry about the LA threatening fines, it is bluster, you will not be fined.

Zoo that’s good news.

Bubbles medical needs tuition must meet the needs of the pupil, it should be adapted to do so.

Sirzy it is amazing to hear DS was able to verbalise his needs and advocate for himself.

Thanks for the solidarity everyone!
and I'm simultaneously glad and sorry to be not alone...

yes @Stilllivinginazoo she gets exhausted. some of her school friends have asked her to hang out tomorrow, (INSET) which is lovely of them but she was literally in tears about it both with social anxiety and because she said " I will need to sleep most of tomorrow" and the weekend. A day in school can wipe her out for 3.

I think we're going to apply for EHCP.

IPSEA have a model letter you can use to apply for an EHCNA. Separate to that, DD should be receiving medical needs tuition.

Have you considered melatonin to help with DD’s sleep?

Will DD take Vitamin D supplements? She is likely to be deficient and that will exacerbate her difficulties.

sirzywell done D's for verbalising need
Definition I'd deffo apply EHCP.sounds like she needs something to help her if the sheer effort burns her out so long.my dd2 has had IBS all week where she's been squashing down her anxiety.hoping inset tom and Monday mean she's got 4days to reset
School have agreed to her request to WFH during afternoon frees on Mondays and tuesday til Xmas as long as review weekly and it's still increasing her capacity to keep on top of work

Hi everyone, I hope everyone is ok. I thought I’d just post a quick update. The meeting with the head went really well yesterday. He was very apologetic and understanding. I genuinely don’t think he was aware of the situation until he received our formal complaint. He promised that from now on, the school will be more supportive. Time will tell on this I suppose…..