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

@teelizzy....my beautiful DPD diagnosed DD disfigures herself. I agree it’s heartbreaking. You have my thoughts and heartfelt sympathy 💐

Hi everyone, I hope you don't mind if I jump on. I admire you all so much and feel so sorry for our kids.
My ds is 17 and struggling with school. He has ASD and is very shy and very anxious. He hates everything about school and to make matters worse, he changed schools for his last year and hasn't made any friends.
He's so angry with me because I don't let him have many days off school and thinks I put the school's needs or my sense of duty over his needs. I worry that he'll get left behind and fail everything if he misses too much school. And he would stay in bed playing video games all day if he didn't have school. He spends every weekend in his room and won't interact with us at all. I understand that he needs his space but this is so extreme.
I want him to find happiness somehow, he's so miserable, but I have no idea how to help him. I got him to see a psychologist once but then he refused to go again. It's like his anxiety now prevents him from enjoying anything in life. I feel so sad for him.

comebacksun welcome.my D's is 15 and sounds similar.also ASD.
He is currently schooling online awaiting placement on back EHCP.he hates school,but I firmly tell him it's the law,and he can't really argue with that
I insist everyone up at civilised hour,even on weekends(10am latest,7.30 latest on school days) because otherwise they sleep all day,up all night which doesn't help the fact all 3are shocking sleepers anyway!
I try to join in something he does to connectwhich involves lots questions as I know nothing.its a conversation at least!he will walk with me,so we go out walking too

You're lucky yours will walk with you. Cherish that!
Mine will only come out when pizza is involved, but after he's finished, he just wants to get back home.
I'll never understand wanting to stay up all night, ds tries this in the holidays and the anger when I wake him up is pretty upsetting..

Welcome Come Lotus

Ellie you have nothing to lose by applying for an EHCNA. The assessment may highlight unknown needs. What about a therapy where talking isn't the main driver e.g. art therapy or music, drama, equine, Lego therapy. Lego therapy is the only therapy DS1 fully engages with.

How would DS2 feel about being withdrawn completely from a subject, maybe a non-core one he doesn't like? Missing the whole lesson draws less attention compared to leaving/rejoining midway. Particularly from September when others will assume he's in a different class. Or alternative provision one morning/day a week at - with a pre-prepared excuse each week DS2 can use if others ask. When DS' have been anxious about people asking specific things we have rehearsed stock answers DS' can use to shut down or deflect the conversation.

Are the school making adjustments such as emailing DS the plan for the next lesson, seating plans, handouts for all, surreptitious movement breaks e.g. asking DS2 to handout books, a signal indicating DS2 needs a break so the teacher asks him to take a message to the office. A lunchtime club that happens to be DS2's favourite interest and is quieter. Whatever would help.

Zoo home tuition can be in EHCPs, it is in DS1's. If DD2 was CSA the LA would have to provide medical needs tuition, but post 16 the only way is via an EHCP. DS' school can't be meeting his needs, he isn't attending! Even if he was, if all the provision DS needs is in the EHCP the current school couldn't meet his needs. The school have 15 days to reply, even if they don't or are late the LA must finalise the amended EHCP 8 weeks after sending you the draft.

jump I'm sorry what's CSA?

@1jumpforward2back Equine therapy would be great for ds2. I'll definitely request that. I think he would like the idea of withdrawing from a whole lesson too, especially if it was french. At the moment ds2 doesn't get much help at all, although he does have a "medical pass" which means he is allowed to leave the classroom if he feels overwhelmed. He hasn't ever used it though, although he has had shut downs and meltdowns in class. Not many of his teachers know about his suspected autism or his suicide attempt. The pastoral care teacher said that it was all confidential and his teachers would be told that he had been in hospital and not to expect him to be on live lessons (this was in February) or hand in any homework for the rest of the week. I was surprised but went along with it because I was in shock and my experience of a 12 year old trying to attempt suicide is zero.

@Stilllivinginazoo CSA is compulsory school age, so from the term after they turn 5 until, I think, the end of year 11, although I'm not 100% sure on that as DS1 is year 10 and I haven't thought that far ahead. Jump may be talking about something completely different though. Years ago I was on a pregnancy message board and thinking it was so unusual that so many of the women there had multiple schlerosis before I realised that the MS they were talking about was morning sickness .

Hi everyone - sorry to hear how difficult everyone’s situation has been lately.
Same on my end - it’s been a real struggle with both DCs. DC2 started private online psychotherapy. School understanding although not ideal he’s missing so much.
DC1 - where do I start? It’s stressful now that he’s of legal age and I don’t have much control over decisions. I feel he would greatly benefit from therapy and/or medication but I can’t sway him to either. I can’t see things getting better on their own and worry so much about his non-compliance. He has a lot of issues to work through.

jump gosh I’m so sorry! My DS1 has had his share of police contact and it can be so awful. BTW, is your DS familiar with The Curious Incident of the Dog in the Nighttime? The police interactions with the main character are quite relatable.

zoo as difficult as it is I admire the control you have with the DC re: routines and schedules.

comeback totally relate to these behaviours. Perhaps try ever so slowly to get him out of his comfort zone. The slightest acknowledgment is still a win. It took months for my eldest to feel able to talk to me. I was in the same boat as you.

Ellie dd2 is year 12(17 to)
Viking lovely to hear from you,sorry things are so stressful still
I can understand your worry.ds is 15(16 Dec) and highly against any medication,he is becoming increasingly vocal too,arguing what he sees as not important (anything he doesn't want to do basically- lessons,chores,personal care etc) very draining

Dd2 continues to spiral.shes become extremely aware of every sensory sensation- we were out walking yesterday and she got very distressed as she gets hot when anxious,but said her body was on fire hot.hates clothing"strangles me" and prefers wear just pants and huge t shirt.every feeling with reflux is ultra magnified and overwhelming her..first time I've been scared for one of my kids.its like she's had full-on breakdown.will ring camhs consultant line today.im not expecting useful help,but to log it means more added to her case file and hope they will hurry up and decide whether she's go get anything else or not.shes 17 now,so we have just insert a year til will be on adult services,and my experience and those of others I know have found the main principle here is meds for compliance/seen as coping,offload from services but keep taking the meds...

Thanks Viking. Ds goes to the gym and works with a PT. I know this is so good for him. It's the only time he'll leave the house ( apart from school)!
It's so helpful hearing everyone's experiences. Thank you for sharing them and for the advice.

Zoo Ellie's correct, I meant compulsory school age. Hope you managed to speak to CAMHS.

Ellie in that case also look at Riding for the Disabled. Languages are a common subject to be withdrawn from so school shouldn't object.

That is taking confidentiality too far, no wonder DS2 is struggling. Teachers can't meet his needs if they aren't aware of them. Staff need to be given an overview. What if staff brush off something (e.g. something DS said) but had they known the background they would have acted on? School need to help DS2 recognise when he is on the verge of a meltdown or shutdown and prompt him to leave the classroom. Regular public meltdowns/shutdowns won't help is MH.

Viking hope DS2 finds the therapy helpful. How is he finding it online?

DS1 didn't like The Curious Incident of the Dog in the Nighttime . Part of the problem is his inability to generalise skills or feelings from one situation to another. Slight tangent, the older DS1 gets the more we struggle for suitable books that don't upset him. Socially and emotionally he is around 6 yet academically able. So many involve death or concepts beyond his social and emotional development.

DS also hates books with death in jump
I think that's why he predominantly reads non fiction now,which is sad as he used to love stories

jump D's finds death very hard too.he tends to opt non fiction these days..

Camhs were initially very high handed claiming my naturally very fast speech was precipitating anxiety from my obvious heightened state.i pointed out all always speak like that,then I was being confrontational!in the end he did have to eat his words after he asked I used any sensory things to ground her.reeled of- play/mohdoh,array fidget type toys,magic pajnt/colouring books,walking in nature(barefoot in summer). Cold water/cool showers,sparkly light/jelly fish floating lamp,soft toys and blankets,white noise type sounds (birds,rain etc...)lavender sprays/candles etc..
He said would note need for support and "reassured me " that 1 week if hypervigilance post trauma of being overwhelmed trying return to school was fine,in fact 3-4 weeks would be ok.easier said then done when it's your child getting distressed by feeling if clothes on skin and that heat from anxiety makes her feel "on fire"

viking- could you consider getting power of attorney for health and welfare for older DC? I have one in place for my mum with dementia so i can make healthcare decisions , phone up for test results etc.
I considered getting one for my oldest DD when she turned 18 and was suffering with anorexia but never got round to it.
Obviously your DD would need to agree to it , and it can also be revoked by them at any point, but it can also be advantageous to them to if they want and need parental support to talk to doctors, arrange appointments , prescriptions etc etc,

On the worst days, this thread is my saving grace. I see so many commonalities in our DCs, and it’s the only place I’ve found like it.

zoo and jump I understand re: Curious Dog. DS2 would have the same reaction. He is terrified of death and loved ones getting sick. His anxiety obsesses between that and not wanting to grow up. He has resorted to watching Disney Channel which he hasn’t done in years. He will still play his VR and chat online but the young tv shows are comforting him at the moment. I do hope therapy will help. The goal is to work through his anxiety and depression and a gradual return to school. Our schools are still closed so it’s online, and his only expectation is to log in and do a little journaling.

So exhausting zoo re: DD2. I’m so sorry - it all sounds extremely stressful. Hugs and chocolate
As for clothing, personal hygiene and the like - been there/done that. Clothing not to that extreme, although DS1 refuses to ever wear a suit ever again. Or attend a wedding. Wearing a suit at a wedding is probably akin to walking over hot coals or something . Hygiene has gotten poor since Covid for both. Ugh.

runner thank you for that advice

Runner You have so much caring for your DM as well as DC. Do you get time for yourself?

Viking DS1 doesn't want to grow up either. I ponder what comes first - the MH problems or the traits that are common among our DC. If you don't mind me asking how did you help DS move on after traumatic contact with the police? Realistically DS1 is going to be in contact with them again in the future, and at the moment how last time was handled means any future contact will get off on the wrong foot before it has even begun. DS1 holds a grudge for a very long time! I understand if you would rather not answer.

From your posts I don't think LPA will help because DS would likely be considered to have capacity, even if his decisions are unwise, so, here at least, even if DS made a health and welfare LPA you wouldn't be able to make decisions for him now. However, if he hasn't got capacity it is deputyship you need rather than LPA. Also, if it is the same where you are, you won't need LPA to speak to GP/make appointments etc., being registered as a carer on their records is sufficient.

Zoo there is a gap in the market for more lighthearted teenage boy fiction.

@Lotusmonster thank you. Both DH and I find it hard to see and though some scars will fade not all will. She spent today doing school work at home by agreement. She finds school interaction really intense and tbh after a year of restrictions on social contact I get the impression that none of her peers are that well adjusted. And yet when there's a positive interaction she's in much better form.

She's starting to work on the fact that she finds it difficult to ask for help. She's been nicer to me over the last few weeks but very guarded.

DS and dd2 were epic stressed yesterday
DS cos school changed trusts and new academy having tech difficulties.the uncertainty of if/when lessons has really strung him out....I spoke on phone,they said concentrate on his well being/do a project
We went for a walk and saw a fox over nature reserve nearby and started a story with writing ideas
They've said each day try 930 and see if we have teams online running.might take up to a week to sort!
Dd2 still bouncing off walls.she was highly anxious wearing clothes to walk.thefox added a little distraction.she stood out back in rain/hail for a bitand did colouring,listening to music,watch her jellyfish light,read briefly and watch TV showsshe loves
Lil zoo was in foul mood when collected after-school.crippling IBS pain and snarling at everyone.that up D's and D's anxiety
Anyone any tips to manage when everyone's stressing out at once as was exhausting?

I've been following this thread for a while and wanted to say hello.

DD2 (16) has an anxiety disorder with panic and low mood, under CAMHS and hasn't been able to attend school this academic year (Y11).

All the professionals involved with DD's care have been caring and kind and from what I have read I think we have been fortunate with regard to accessing services but the system is clearly overwhelmed and unable to cope with the huge demand upon it sadly.

I never imagined we'd be in this situation (who does) and it's so hard to know how to help.

muddling hi
Camhs told me not to keep helping,I'm encouraging dependence and facilitating lack of resilience if I do.i cannot.WILL NOT.ignore my distressed 17 year old in a bid to get her independently managing her anxiety.she is making small step progress but to not offer distraction/ideas esp when she's asking for it is cruel and imo neglectful as I'm ment to be care giver and comforter.she is learning the skills,I encourage that,but I will never just back off and expect her to handle it when she's distraught and asking for help
How are you coping?

Welcome Muddling

You should apply for an EHCP if you haven't already. If DD was younger the LA would have to, and should have at the beginning of the academic year, provide education to DD because she is out of school for medical reasons. However, as she is at the end of Y11 the only way to secure that now is via and EHCP. Also apply for for PIP if you haven't already.

Tee recognising you need help and asking for it are big steps.

Zoo I think there is a difference between helping and enabling, and a fine line between them. When DS1&3 are compounding each other's anxiety we make them separate otherwise they just increase each other's anxiety and stress.

@Stilllivinginazoo - thank you - we haven't had a lot of advice yet on helping DD. She is on Fluoxetine and awaiting CBT - I believe the two should ideally happen at the same time but CBT waiting list has been longer than we (and possibly psychiatrist anticipated). The general tone so far has been to try not to pressurise her to do too much while at the same time encouraging and facilitating more family time engaging in fun activities (she spends a lot of time alone in her room as she doesn't want to be around people). Good days and bad days - small wins like playing a game together are wonderful.

@1jumpforward2back - school were very accommodating when it became apparent DD was going to struggle with reintegration last September (reduced timetable, dropping some subjects, no registration, provision of a quiet space she could go whenever she needed) and we all thought she would cope with these adjustments in place but unfortunately she couldn't.

School didn't feel that they could realistically do anything further with DD not attending at all. She is having alternative education provision for children who are unable to attend school (I believe this has different names in different areas) but it took a while to set up as the referral can only come from a limited range of professionals. The service is fantastic and caring - I only wish we'd been able to access it sooner.

We have recently applied for an EHCNA as post-16 we need to try and get something in place and I am very worried about it. We didn't apply sooner as hoped CBT might have started and that we'd have a clearer picture of future needs plus more evidence. I have you to thank for knowing about the existence of of EHCP's from reading this thread so thank you!

I haven't applied for PIP as I don't know anything about it and assumed we/DD would not be eligible (DH and I both work) but I could be wrong.

I'm glad DD is receiving medical needs EOTAS tuition. Be aware if will stop at the end of Y11 as the statutory duty only applies to compulsory school aged pupils, and it is very unusual for LAs to continue post 16.

LAs and schools often say medical needs tuition referrals can only be made by certain professionals. This is incorrect. The statutory guidance specifically states arranging education should not be delayed if evidence from e.g. consultants isn't quickly available and alternatives such as from GPs should be acceptable. See pg8.

Make sure the LA stick to the EHCP timescales. If they agree to assess make sure to request all relevant assessments, and if they don't agree to assess, appeal.

You should apply for PIP, DD is eligible, it is not income based, and DD (or you/DH as her appointee) would apply in her own right. The benefits and work website is helpful, as is this guide.

Hi everyone
It's been a while. I have just caught up on the whole thread. Thanks for thinking of me recently 1jump.

We are half way through the EHCP process. School senco is great and is on our side. DDs current 121 is helping. We are up to about 3 to 4 days per week at school. Not all in lessons but it's a good start.

This week she has been referred to ED team. Camhs doctor asking me why she wasn't hospitalised by paediatrician in appointment on Tuesday. I don't know!?!

She has bmi of 13.1 and is 75% wfh. She has put on 2kg in the last year but at 14 has grown in height considerably. We have our assessment in a week and a half, only put through yesterday. Canhs don't know if they will take her on as it's likely Arfid rather than anorexia or bulimia.

The EMDR therapy can't start until she is physically heavier as the therapist things she won't be able to process things.

I have read through your various struggles. Lovely to see everyone still supporting each other. Special wave to zoo, 1jump, bigbus, runnerduck

Anne good to 'see' you, sorry to hear things aren't any better. What a helpful question from the CAMHS psych. If they thought she needed admitting, and I can see why they do, they should have organised it! Nothing like passing the buck. If your local ED service won't, or can't, help DD needs referring out of area to someone who can. Positive steps with school considering at one point she couldn't go at all.

You should be further on than half way through the EHCP process. l've just had a quick look, you posted you made the request on 31st Dec, making it week 18. The EHCP must be finalised by week 20. If the LA aren't sticking to the timescales IPSEA have a model letter you can use to complain, if they still fail to meet the timescales you can begin Judicial Review proceedings.

DS1's rebound therapy is cancelled next week so instead I have booked a swimming slot. When a local pool re-opened it divided its pool into sections, so you have a section to yourself. I hope this will be more manageable for DS1 as he used to like swimming. And since it is in school time hopefully it will be quieter.