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

@1leapforward yes I understand that re. the propanolol prescribing. But I was referring more to the possibility of the Gp prescribing this initially without a referral. As even private referrals can take weeks now. Ours was an 8 week wait and it's worse in many areas.

Fferny even for a young person 12 and over in many GPs won’t prescribe anything for MH without it being initiated by CAMHS/private psych.

Sadly I'm well aware of this @leap.
Several months ago my gp says he couldn't help with Ds as he wasn't allowed to prescribe due to his age, counselling didn't help & perhaps made things worse & by the time we were seen Ds was suicidal.
How many other families is this happening to?

Fferny sadly too many, but I don’t think the problem lies with primary care not prescribing, it lies with poor access to secondary care. For several reasons It is wise GPs don’t prescribe. Not least because in children and young people medications should never be the first line choice, best practice is meds should only be prescribed following an assessment by a child and adolescent psychiatrist and should always be alongside therapies never instead of which requires onwards referral anyway. GPs aren’t trained and specialist enough to safely prescribe medications (lots of which are used off license) for MH conditions in paediatric patients.

Thanks 1leap. I hoping the clinical psych recommends these.
Dd is in a low mood again. Outwardly relative positive but she says the thoughts in her head are very dark. This worries me a lot.

How is everyone's Monday?
Ive had a wobble, DD was, (eventually!), referred to health needs education service, we had an induction appointment, predictably, despite really trying , couldn't get DD out of the house so I decided to go myself so I could talk to them and explain situation ( she really needs outreach)
They turned me away at door and refused to see me without DD. Won't do a home visit. Said panel agreed to 6 week centre based programme and if she needs outreach they will have to go back to panel but can't go back to panel until they assess her in centre-ffs! Its a catch 22, like it's deliberately designed to leave her without help.
Felt so ridiculously upset nearly cried in reception, felt so deflated.
Calmed down now ,tbf IF we win EHCP appeal the specialist school we are now appealing for will do outreach but still no idea of a rescheduled hearing date. Predictably LA haven't responded to emails with our new date suggestions or returned the working document to us.

@Runnerduck34 -that's ridiculous and so obstructive! The LA and medical needs education service must be fully aware of your DD's difficulties and that she needs outreach to accommodate her because she isn't able to access provision in person currently! Also - 6 weeks is nothing!

I would expect them to be able to offer a flexible and tailored approach according to DD's needs to include online, home tutoring and in centre if able/appropriate, 1:1 or small group. I would have thought many of the students being taught via the medical needs tuition will be struggling to access in person - certainly that's the case here (many pupils referred due to anxiety/unable to attend school in person).

What do they need to assess and couldn't they "meet" you both virtually if they really insist they can't do a home visit (which seems odd in itself). What an awful start to your week

Thanks all, I’ll definitely look at claiming.

@Runnerduck34 that sounds really stressful. You’re right, it does seem as though sometimes they make things as hard as possible. Fingers crossed for your appeal.

Good day with DS, he was up and out and at school on time. I did have to give him a lift to get him there (15 min walk away) but I don’t care as long as he goes.

Not so great with DD and feel like hitting the beta blockers myself to be honest. She had a doctors appointment this morning for an ECG and to talk about her eating disorder and I had to go with her. They are talking about hospitalising her and are worried about her ECG. This is like a gift to DD who is silently thrilled about the whole thing. She’s really angry with me for telling the doctor about her health anxiety and diagnosis hunting but they have to know. There is a bigger picture than just the eating problems. I don’t know how else to put it other than she seems desperate to be disabled, I hope that doesn’t offend anyone.

In the past 2 years she has had depression, anxiety (on ADs), been issued with hearing aids, seen a physio for hyper mobility, been investigated for endometriosis, diabetes and anaemia and phoned up for at least 8 blood tests. Her Twitter profile also says she is bipolar with cerebral palsey. It’s all bollocks.

I’m at my wits end today. She wants to be a paramedic but honestly, the thought terrifies me!

Hi everyone,
Just wanted to join the group but feel unable to write much as on the edge of tears as I'm worried sick about my teen DS. Have a face to face appt with GP and hoping it will help. DS keeps saying no point in going as not that bad. Just trying to hold it together. Can't tell DH as DS doesn't want me to so I'm going to have to persuade him to tell him himself.

Hello @circleofexhaustion
I'm so sorry to hear how hard it is, I think we've all had days of feeling we are sinking and feeling tearful, I know I have.
Good luck with GP appointment, DS seeing GP is a big step. You must feel stuck in the middle between DS and DH.
How old is DS ? Feel free to offload here, lots of sympathy ears and often some good advice.

Thanks muddling and Barry.
I did think about suggesting virtual meeting but DD hated them and very unlikely to go on camera or talk.
On the plus side DD was brighter and happier at the weekend than she had been for a long while, even came downstairs to watch TV with us! And a programme I choose!!! ( great pottery throwdown- I normally we'd have to watch anime!)
She is currently in the bathroom dying her hair purple, which although if she ever goes to school would be a disaster atm it feels like victory as she is actually caring about her appearance/ washing her hair!!!

Runner DD2 isn't keen virtual appointments either and tends to sit off camera muttering monosyllabic answers that then need to be translated by me! I only opt for them if a home visit or us attending in person isn't possible.

That is positive DD dying her hair and I totally get why you are pleased. DD2 decided a couple of weeks ago out of the blue that she wanted to make changes to her appearance (hair dye, ear piercing, new clothes, make up etc). Part of me wonders if it's to try and disguise herself in case she ever sees someone she used to be at school at but either way I am thrilled and have embraced the plan wholeheartedly!

Circle as Runner says you will find a sympathetic ear here and it's good to offload. Lots of knowledgeable posters with helpful advice too. Good luck with GP appointment for DS.

circle welcome.would you like to talk about D's difficulties/how you are feeling
Runner

Sorry I dropped off the thread.

Well I did complain,both to LA and the actual taxi firm
Driver unfortunately takes 2other DC,one of whom mother insists this is the only driver she wants as he's only one we've had with very good English....I had a stand off with him again over masks wearing,aware boss had made it clear whilst not a legal requirement it is a company one which he did NOT appreciate me reminding him
He wears it,but not over his Mose on the way,on way back I don't see him and D's says covers just his bottom lip.no one cares so I've just had to let it go as too many other things higher up the list taking up headspace when it's that time if year I suffer badly depressive episodes sometimes
Lil zoo gut pain is now being taken seriously by school,we have a meet tom to discus new strategy which I'm told involves dropping subjects she won't be taking for GCSE courses next year and try where poss ho in but later to allow her to try and go to the toilet before school
Dd2 continues to cling by a thread.deoressed and constant anxiety.shes very hard work poor thing and I have so little mental energy now I don't feel I'm giving her as much reassurance as she needs
DS continues to find taxi and school highly stressful,but appears be masking there so they think all is great.home life is another story altogether...
On top of this I've had ehcp team say 2weeks time I need give 6th form option which when he started school was told theyd facilitate
They e heard him say he'd like attend the girls school,no doubt as no transport and sisters there but with over 2000 students on site I cannot in all honesty see him coping,plus he will literally have 1gcse(possibly) I really doubt that it's an option on the table.i no idea how to find somewhere else for him.ive email school for help.no reply(becoming a common theme)one of the girls who flits between MS and the unit,the only child he actually gets on with,is attending 6th firm there and begging him to go with her.i just don't even know where to start
Leap any suggestions lovely? I can't remember if any of yours are that old yet that you have any experience with it?

I will try harder to dial back in to this thread.i has been a wonderful comfort over the years and it is my hope that I can continue to provide this for others.xx

@Stilllivinginazoo it's lovely to "see" you, sorry you are struggling with your own health at the moment and that life is so stressful. Taxi sounds like a nightmare but good that DD3 school are paying attention and trying to accommodate.

We are going through post-16 choices with EHCP team at the moment for DD2 - it's a bit of a learning curve for me.

Welcome Circleofexhaustion, although I am sorry you have a need to post here.

Runner being downstairs and watching a programme of your choice is wonderful. Many SS aren’t as strict with uniform/hair etc. so you may find the school don’t mind.

Medical needs EOTAS tuition must be suitable and appropriate to a child’s needs. If DD needs home tuition it must be provided. Write to the Director of Children’s Services complaining and threatening JR. Also complain to the LGO - children out of school are the one time it is worth complaining before exhausting the LAs complaints process because even through the LGO can’t formally take the case before you have exhausted the complaints process they will often tell the LA to pull their finger out and provide education.

Barry have you considered DD is ND? Autism in particular is often misdiagnosed in high functioning teen girls. Many are misdiagnosed with depression, EDs, BPD, bipolar disorder.

Zoo sorry you are still struggling. My DS’s are younger, but DD2 is older, she didn’t have an EHCP though. Although, I have helped lots of others with older DC. This may be her way of trying to seek help and cope.

Have you tried pushing for an individual taxi for DS? Don’t allow the girl at the unit to influence DS’s sixth form placement. That would be a terrible idea. Legally the LA have to give you the chance to name your preferred placement, have you had an AR? It is highly unlikely a child who cannot cope in MS secondary would cope in MS sixth form. You can search for placements here. What about one of the original SS you looked at? I’ll PM you some ideas, they may include the ones you first looked at but without rereading PMs I can’t remember all the ones I messaged you before.

Alternatively would you consider residential? There’s a MN’er whose DS attended Farleigh FE college and made amazing progress after a failed MS sixth form placement. Some of the Aurora colleges are also highly regarded, and there’s a MN’er currently trying to get one named in her DS’s (ASD, significant MH difficulties) EHCP.

You and Muddling may be interested in SOSSEN’s webinar tomorrow on post 16 SEN provision.

Dropping subjects DD3 won’t do at GCSE sounds like a good idea, but I would want to know how the gained time is going to be spent. DS1 (EOTAS) and DS3 (MS) don’t do all subjects, instead the time is spent with other therapies/interventions. Going in later is OK in the short term if the aim is reintegration, but long term it is unlawful regardless of whether you agree. If DD cannot attend school full time alternative provision should be made. For example, home tuition or online provision in the morning. I would also apply for an EHCNA.

Don’t feel guilty at not providing DD2 with so much reassurance. I am sure you are providing plenty and sometimes too much reassurance is counterproductive.







leap as always you are a star
Lil zoo has access to online content when at home.her school is a rare find- amazing educationally and with excellent staff that bend over backwards to help with any issues,esp if it affects learning potential ❤️
How to I access the webinar please?
Muddlingthank you.im finding post16 even harder than I did regular schooling as his interests are very limited and the tendency is to build on career paths!he loves to write/wants to be an author,but not even sure his joke of a placement can secure his GCSE English pass yet,despite him being a very bright bot and finding the language side relatively easy the lit side is not something he's had any experience of before and is too literal to grasp inner meaning and analise...

@runnerduck Ds also dyed his hair last term while he was off school. His hair's long & curly and he dip-dyed it blue & red.
He went back for a week or so prior to Xmas and they didn't dare say anything 😂.
Now it's a different colour & in such poor condition due to bleaching he's using all my conditioner.

@Zoo it sounds as though you're under constant stress but doing a amazing job of looking after your children to the very best of your ability.

Welcome to the newbies.There is so much excellent advice on this thread and comfort to be found too.

Part of my pp is in the wrong place . This may be her way of trying to seek help and cope. was supposed to be on the end of the paragraph for Barry.

Zoo when you say DD3 has access to online content, is it teaching or self directed study? If the latter is it very high quality with input when DD is struggling? You can register for the webinar here. Would you be better looking for a placement who can offer more GCSE options before looking at more other more vocational courses, especially if DS is academically capable of GCSEs? Some of the placements I PM’ed offer GCSEs to post 16 pupils if they are appropriate.

I've finally managed to register with SOSSEN and found the webinar thanks to your link.

We have further meeting with the LA this week to discuss next steps. LA have consulted with FE and I have had meetings with the SENCOs also. Both have said can not meet DD's needs in mainstream. LA also encouraged us to investigate and suggest post-16 options to them to consult with but I haven't found any that I think would really suit DD (attending in person is a huge barrier although she says she wants to be able to in the future rather than all home learning). I believe DD needs provision that is small and bespoke and flexible with outreach and online if needed but in person if possible focussing on social skills and rebuilding confidence/self-esteem rather than academic qualifications until she's ready. A possible setting has been suggested but I'm trying not to get my hopes in case of disappointment.

Should have said I'm hoping DD will have a few GCSE's by September as she is currently being supported by medical needs tuition.

Muddling Do you have it in writing they can’t meet DD’s needs? I think they are right, DD won’t cope in a MS post 16 setting. Is DD’s primary need SEMH? What type of course are you looking for? Further GCSEs, A levels, something vocational, a mixture or do you not mind as long as it can meet DD’s therapeutic needs? What about EOTAS with a mixture of home tuition/other provision and provision outside the home - the balance between the 2 could change as DD becomes more able to leave home.

Leap I have it in writing from the LA but not in so many words from the FE SENCO's as my conversations were via telephone and follow-up emails said they would confirm our conversation back to case coordinator. It was one of the SENCO's who suggested the provision we are now hoping to consider as she felt it could meet DD's needs/profile. It is small (handful of students) and separate and can only be accessed via EHCP. Seemed to be mainly working 1:1 with DC to catch up on English & maths if needed, work towards EHCP goals, SPaL if required, mental health support, mentoring, therapies eg art therapy, building up to future transition to work/mainstream/other over 1-2 years. Although attending in person preferred, the option for online and outreach is there too. The LA have asked if we would like to consider it and I hope to find out more in our meeting.

Yes her primary need is SEMH due to overwhelming anxiety, panic, low mood and social communication difficulties. EP's picked up some processing differences and sensory needs too. DD isn't able to consider the future at the moment really due to her MH. She does want to feel better and is sick of her current situation but doesn't know what she wants to do. She was in GS so is academically able however she has never been interested in A levels and she had planned on a specific FE course a few years ago as it's the only thing she is interested it. It can be carried on to university if you choose to. She would not be able to cope with it at the moment. She is having more face to face contact with different people now and it does her so much good. I'm not that worried about the course in September so much as the environment if it will help her mental health and confidence. I just want her to get better and find a path that makes her happy - I don't care if she needs to stay in education/training for several extra years to get there!

I am possibly going to regret it but I have not appealed the EHCP despite it lacking detail. We have what we wanted in place for the rest of this academic year and our case coordinator seems to be a pleasant human being who genuinely seems to be working with us on next steps. She's also proactive at keeping us updated via email and arranging meetings.

New to the thread but feels like you’re all a supportive lot. Hope you don’t mind me joining you all.
DS (16) has depression and anxiety along with adhd. Been advised by his psychiatrist today to defer his GCSEs.
Feel totally overwhelmed with how we go about that but probably the best decision for him. Think I need to get my head around all the teams I need to work with to make that happen.

Hadawayman welcome. Is DS attending school at the moment, and does he have an EHCP? MH has to come first, qualifications can come later if necessary.

Muddling The problem with specialist provision if the EHCP isn’t detailed is it is quite possible the LA will refuse to name your preferred placement if it isn’t the one the LA want because the EHCP doesn’t show the provision DD needs. But, you will get the chance to appeal again when the EHCP is finalised with next years placement (if it is changing) if you need to. If DD is set on one course and you can’t find a SS that will offer it (even if they don’t normally some will for individual pupils) EOTAS could provide tuition for that and them other provision in or out of the home. I will PM you some ideas.

Hi 1leapforward2back no he’s not has been since mid December. I’m 100% behind him not doing them this year, just need to figure out how to do it, going to set another meeting up with the school.