Parent and carers of anxious teens(part 6)

[Stilllivinginazoo]

Another thread full!!
For anyone new,these threads started as my D's had crippling anxiety in year 8( and was later diagnosed ASD)now about to start 6th form in September we have been running this quite a while!
This is a safe space to discuss the overwhelm that can engulf us,seek advice and find friendship with others in a similar position.
Please note this is a non judgemental space and respect and care of each other is at the centre of what we are here for.
Whether you want to vent and run,or hang around a while,welcome!

Hi folks
Sorry I haven't been here for a while.

LA are finally arranging EOTAS for DD. We are looking at half a day per week at a farm and another half day with a social group to start with, while we work on her mental health.
Final draft ehcp came through and it is still crap. New tribunal date is early October so will work with lawyer to re-draft. It is 18 months since we started this process.

Dd relationship with camhs is breaking down and she is refusing to go back to psychiatrist. She feels they haven't listened or helped her in 2 years (not wrong) and wants us to source a private psychiatrist and Psychologist again. Not quite sure where to start.

Zoo - so pleased for you about ds placement.

I will catch up on everyone's news...

How is everyone doing?

Tiktok I’m sorry the relationship with CAMHS leaves a lot to be desired. Would DD see a different psychiatrist at CAMHS? BPS have a search tool to find a psychologist here and ACHIPP have one here. I hope the farm and social group work. Was your hearing vacated? We have just submitted an appeal following AR.

Bittersweet is spot on, Runner. DS2 returned yesterday, he had a great time and the parents were grateful for someone to keep their son company, but DS1&3 are a world away from being asked to go on holiday with a friend, in DS1’s case even having a friend is a long way away.

Glad dd2 had a nice time @1twirlforward2back
We are having issues with dd2 as everyone's doing stuff on SM,a lot festival and holidays abroad and she's struggling to get out of bed or go to a local park by herself which is making her feel very unhappy.she wrote a summer list,but realistt it's not fully viable given coats of train rides to the beach ,bus fares to X,y,z alongside her anxiety being so rampant

Thanks for the links 1skip. I will check then out. Dd has said she wants another psychiatrist with camhs and is not going to her appointment this week. I will tell them what's going on.

The hearing was vacated yes as dd being withdrawn from school meant the content needed to change. We were no longer naming the independent school. Her CP reports states specialist semh provision is needed. Not sure what/where this may be but mental health is priority right now and advise is no school until she feels better even under eotas.

Zoo For the financial side of things have you applied for any grants e.g. Merlin’s Magic Wand or Family Fund? Have you looked at a disabled bus pass and rail card for DS too?

Tiktok I hope CAMHS are amenable to changing psychiatrist. I wondered whether the tribunal was vacated due to lack of court time. When/if DD is ready to think about a SS you can search for schools here.


advise is no school until she feels better even under eotas.

With EOTAS there wouldn’t be a school involved.

Yes, sorry. I meant no tutoring even under eotas. So just farm and a social group to start with. Assuming the panel sign off the funding :/

I hope the LA settle. What about therapies?

Sorry been awol. Had a lot on with my health and DS2s birthday.

DS1 does get support from barnardos as a young carer.

He's currently worried about going back to school in September. They sent a letter home with him about his progress. Now, the year average progress score is 76. DS1s is over 80. Yet they have still called us in for a meeting on the 2nd to discuss this as they feel he's not reaching his potential. I know he's a clever kid, but they said he can't progress into the next year until he's had the meeting, in full uniform, before school starts on the 5th.
And sending a letter like that home when

1. Hes above average
2. They know he suffers with anxiety
3. They know I'm disabled and struggle to get to the school
4. They sent it on the last day of school so I can't rearrange it to be a phone call

Only serves to upset and worry him. Part of me is very tempted not to go and keep him at home, then when they phone me and ask why he's not in school I can tell them that as I didn't attend the meeting I thought he wasn't allowed in to year 9 so I kept him home, but I know that will only worry DS1 more because he won't want to gey into trouble.

Therapies is where we are struggling. The draft ehcp just says under camhs for medication and appropriate therapy (!)

We have been waiting for cbt, a teen support group etc for many, many months. We are told she can't be on the waiting list for both at the same time :/
She still can't access emdr as she is too unwell for it. We had a TAF meeting and our lawyer ripped into camhs and is going to make a complaint that they are not taking a child centred approach and they are top rigidly sticking to policy at dds expense. I think I need to see how the lawyer redrafts the ehcp.
The CP report recommended urgent therapeutic intervention before anything else.

Tiktok Therapies should be in F, that way if CAMHS can’t or won’t provide it the LA must. You want SALT and OT as a minimum too. Have you tried emailing the designated medical/clinical officer? DS1 still isn’t able to engage with EMDR either.

HerRoyalHappiness do you have the email address of anyone senior? If not, there is likely to be someone at the school on the 1st so you could call then. Perhaps it’s to do with progress against potential/target grades rather than year average. At GCSE, an above average pupil can have a negative progress 8 score, maybe the school want to catch any problems early. Can you use the meeting to ask for additional support for DS’s anxiety?

How do I find designated clinical officer?

Tiktokcat if you google your area and designated medical officer or your area and designated clinical officer (some areas call them the former and some the latter) you should find there details. If you can’t and would like me to try to find out who it is PM me.

Well big news heredd2 took a bus to town with her counsellor Tuesday,went museum and had boba tea!
On back of this discussing trips with only schoolfriend,who is off to uni sept,they wanted a beach trip..sadly only dates bothcould do are until Monday evening...
Wednesday dd2 went to MK with her on the train.they took lunch to a park and had a picnic.her IBS flared very badly before and texts were constant but she did it and so desperate to do the beach I threw caution to the wind.

She's booked a train to Brighton Sunday,with change train involved(easiest train to beach we could find) as she can at least pace if necessary/not "trapped" in her seat.theyrw staying over at an air b+b and coming back Monday!
I'm very stressed inside as this is a huge leap but as has no friends in her current year group she won't get the summer of freedom with friends if waits til next year,and I know will regret not trying if she doesn't have a go.we have killed ourselves financially to do it,so if goes tits up there's no chance traveling to her,only phone support.

We have printed off list all stations she passes to tick off,spot the differences and have noughts and crosses grids/paper and pens and she has downloaded mindful doodles onto her phone,a mini colouring book and pens and playing cards for train trip.
A list of free things to do if being still at beach too long freaks her out.
Taking pack lunch,then pasta pot and tin chickpeas for her dinners selection of snacks and a mini carton soy milk and variety cerealboxes for breakfast subway for lunch before train home if wants it so all familiar foods.
Air b+b has TV/WiFi and friends bringing Uno.

I know she will text me all but constantly which I discovered on her MK trip was very very draining,and someone did mention if she has difficulty understanding I'm still here when she's not.i asked her why she chooses to text rather than just enjoy be out with her friend- I like to tell you what I'm doing and you tell me what you doing...
It will be nice for D's and lil zoo as she dominates everything and we all back down for an easy life as meltdowns can be epic.id like this to be a springboard of new routines so everyone gets fairer cut of my time and I get some time toyself also.we shall see.
Anyone who is around Sunday /Monday for hamdholding will be much appreciated,anything to add to the list to support her adventure also welcome!

She has fasting bloods and ECG Tuesday morning,as requested by camhs,so will be back to earth with a bump after wards.

Hope everyone's ok.
DS start rev about September...

Hello I am new to this thread and mother to a 16 yr old anxious DD,

Back story is when she was 1 and I went back to work she had huge separation anxiety issues and it took me months to find a child minder that would accept her and the same thing happened when she started pre school - 3 pre schools in and finally some one accepted her. She would literally cry until I picked her up. By the time she started school all was great all separation anxiety was gone and she was a very social outgoing little girl. All was fine until she was about 12 and her friends were becoming more independent and she wasn';t because she was too scared and wanted me with her at all times. It is about this time she stopped going on sleepovers or days out without me. However she was loving school and had friends round to our house.

Then the pandemic hit and she loved working in her room and not be expected to go anywhere or see anyone - she was so happy. Back to school after lockdown and she became anxious at school and exams became a real headache for her. She was sick most mornings and hardly slept for most of her final year. Friends got fed up of her always saying no because she was scared to go out so I think she used me as a substitute and we did things together. I took her to the GP and he was lovely and prescribed Propanol which got her through the exams although she is only predicted low grades which is a shame because she is capable of so much more. We also paid for some private counselling which did help.

Since leaving school in June she is really happy sleeping and being on tik tok and instagram. She has no inkling to leave the house and she is so happy.

However I made her apply for jobs and she got one and she has done 2 shifts in a shop. Obviously her anxiety was through the roof. When she had to work yesterday her shift wasn't until late in the day and I was at work so my DH was at home witnessing her anxiety attack, she was sick, shaking screaming that she couldn't do it etc . She was saying she just isn't the type of person that enjoys working or being out the house - he agrees and thinks it is more detrimental to her mental health forcing her to do stuff when she is happy staying home.

For the record my DH doesn't go out and hates people - he goes to work but that is it. He can't see why i am forcing her to work or even go out if she doesn't want to because he witnessed her anxiety properly without me being home he thinks the anxiety attacks are is detrimental to her mental health. Because she doesn't go out she doesn't need money so why does she need a job. His mum and sister are very similar and have never left their home town and never been on a holiday or to the cinema/ meal out etc. They say they are not anxious both are so happy in their own respective homes.

I am the opposite and love life and love exploring and being out with people and DH's family say I am trying to make her like me and I should leave her be. My parents say I need to keep pushing her to get through this anxiety.

I think I should encourage her to get out in the world but they think I need to back off and let her stay home forever. I worry this will make her anxiety worse because one day she will have to go out in the big wide world but my DH's family is saying she has no ineterst like them in the big wide world so just leave her be, because there is no obligation to go out in the world. Staying home and enjoying the comforts of your own home is fine.

So do I just leave her be and not worry. I think we need to crack it now. I really would hate for her to not experience and see the world.

Any advice would be greatly appreciated.

Welcome Folly. I think there’s a happy medium between the 2 extremes. If you push too much you risk damaging DD’s MH, but complete avoidance without seeking support and improvement breeds further anxiety. Is DD still receiving any support? What are DD’s sleep and eating patterns like? Has she had blood tests, I am specifically thinking about B12 and Vit D? Has DD ever been assessed for ASD? Apologies for all the questions!

Zoo I hope DD2’s trip goes well and you can spend time with DS and DD3. Have you checked to see whether you are better off on UC? Many with disabled DC are.

Women @folly115
Personal experience says some level of challenge does matter or world's shrink and anxious brains need ever tighter restrictions to feel calm.it must be extra hard not being on the same page as your husband over this.do you have any other children in the mix?

Zoo, how is DD2’s trip going? I hope you, DS and DD3 are managing to spend some time together.

@1twirlforward2back thanks for asking!she had tears and IBS before her older sister picked her up to travel to the next town to catch the train(less connecting trains that way).I wrote out the list of stations she would go through and a fact about each place,then added it to a plastic wallet with noughts and crosses sheets,fidget toys,doodle book,colouring book and pencils and the return list(as different) we text most of the way.she had a connecting train half hour into trip and then did two hours on second train.had bouts very bad anxiety but combo of ticking them off,read facts,texts and looking out the window at lots changing scenery helped!
Her and friend arrived at lunchtime and we did a timetable of things to do,with times of openjng and postcodes on it.shes had lunch on the beach,been to a cool poster shop,bought few souvenirs and sat in a park.got keys to place and has had bubble tea.plan now is beach til sunset along with pier,and arcades if she can manage it.took almost all her food with her,she has a pasta pot and chickpeas for tonight,a roll and will pop into Tesco express on way home from beach for some cheese(her friend has tuna rather than peas as was easier to pack for them both than add stress on DD of what her friend would do) they have variety cereal boxes for the morning,DD has a mini soy milk and a plastic spoons so can take it to the beach and eat brekkie there and hang out a while.check out apartments at 10 then they've a couple other activities on the list to do before the train home!
I'm quite worried how she will handle nightie,she self regulates by sleeping on me mostly,but it was a one time only chance to do the summer of freedom with this friend before she heads off to uni and I don't want DD to regret not trying to do it forever...

Zoo I hope overnight wasn’t as bad as feared, and this morning has been alright. Could you use the opportunity to try to break the cycle of DD2 sleeping on you? It can’t be helping your sleep and health and in turn how you are able to support DC during the day, DD2 could still sleep near/next to you.

First thing she Text once on the train was looking forward to huggles and sleeping with you☹️she had about 21/2-3 hours sleep there?
Been very stressed today,plans changed as wandered into North laines and her friend wanted to go in all the vintage shops etc.tjey never went to the upside down house or the museum in the end of the park.she got very stressed about 11/2 hours before was due to come home as friend needed loo and nearest was as train station.it was super busy and she freaked out.i encouraged her to leave the station(she wanted stay so didn't miss train) and I googled a nearby green space to go to,sent postcode and they went there for 20 minutes to refocus before get a bottle of water and snacks and back to station for trip home.shes literally just got on train for final leg at st pancras,sheer size of the place threw her completely,and she's about 50 minutes(and has 3stops,fourth being disembark) before at station in town next to us.shes pretty overwhelmed I think and I'm expecting a masking kick back of anxiety once she's behind closed doors.its been very very stressful navigating support thru my phone,more so than in person as she's in a strange place which has required a lot of Google/Google maps to help me.but she did it,and be interesting to get her perspective in a couple of days once she's had time to reflect on the experience

Trying to catch up with everyone’s post. Here’s where we are at. DD1 turned 18 last month crippled with anxiety won’t leave her room. Room is an utter tip she spent a whole day cleaning one bookshelf it has to be perfect. I’ve said I’ll help but she doesn’t want me touching anything. She would rather leave it messy and not bother because she can never get it perfect (same with her appearance), her room echoes her state of mind. She’s nearly signed off from CAHMs but there’s a huge waiting list for adult mental health, she had a phone all with a SAMH peer supporter today though. Her typical day is get up 1-2pm mess about or go back to bed, go on Netflix or YouTube, maybe have done dinner with us or come downstairs for a bit at night then stay up all night. We’ve had arguments about her making noise at night and waking everyone else. She’s not helping herself right now either as she does none of the suggestions CAMHs have recommended. She started sertaline but gave up after a week due to side-effects but part of me thinks she had read if much about side/effects she was bound to get them. So as her parents we are at a loss how to help her right now she’s getting worse.

Welcome folly
Zoo - she did it, even of it was a bit stressful. I agree you should try and get dd sleeping a little away from you to aid your respite

Dd had worst meltdown in a long time today. She is lonely, bored, needs help and is projecting all of the upset on me. I am broken

sweetkitty If DD is transferring to adult care she should remain on CAMHS’s books until she is seen by the adult service. I would be waking DD earlier, sleeping most of the day and being awake at night will be exacerbating her MH difficulties and waking the rest of the household is not acceptable. I don’t know whether they are still recruiting but it’s worth looking at this pilot scheme.

TikTokCat I am sorry DD and you are struggling so much. Have CAMHS mentioned being referred to a tier 4 team?

Zoo I hope DD2 can see she did it despite feeling anxious.

DS1 is not liking the heat.

Shebrefused to go back to the psychiatrist last week as she no longer trusts her. I've emailed twice and had two voicemail but I'm still waiting to understand what next steps are camhs wise. Dd is begging for therapy and saying I've let her down as she has been asking for so long and I am not listening.