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!

Hello @cowzen and @purplepandas, I'm sorry you and your DC are having a difficult time. This is a good place to vent and also to get really helpful advice.

My DD2 seemed ok until age 14 when friendship issues and extreme anxiety manifested. Unfortunately things got worse despite our best efforts to keep lines of communication with school open and arranging private counselling for DD. She was unable to return to school in Y11 for more than a handful of lessons (I don't like the term school refusal - she really wasn't able or well enough to go). It was a stressful and lonely time trying to get help and wondering if she would be well enough to engage with us, the works, rejoin education etc. DD is now 18 and has just received a diagnosis of ASD. She's been on Sertraline for approx 18 months and it has been positive for her (started on Fluoxetine which didn't work as well for her - different AD's work best for different DC). She has and EHCP and attends a placement which is so far working well for her but she still has a long way to go.

As others have said apply for EHCNA and DLA - everything takes a long time so it's good to get the ball rolling. As Bounce said you can apply for EHCNA yourself (we did). You don't have to wait for school although I'm sure it's easier if they are on the same page. After experiences with both my DD's I don't really trust other people to do what needs doing and in a timely fashion - we have to advocate for our DC and it can be exhausting!

Today's appointment was...pointless,depressing,frustrating.
We switched to a phone appointment as dd2 was so distressed and couldn't get herself out of the house.
I explained everything right back from camhs debacle and he noted our g.p has prescribed Prozac and I explained weaning off sertraline.he pretty much us content to do with that and contact g.p any issues,major concerns they will contact adult services.he will be in touch in three months.
I asked about anything to help her as she cannot regulate once in frenzied anxiety.nothing offered,just if she has ASD it'll be ASD team that would be looking to support that.i point out up to 2year wait to reach diagnosis stage again nothing.he spoke to me like I was stupid as I basically parroted back to be certain my disbelief was in fact correct they were offering nothing...the ASD asst team said they don't do anxiety work even if does get positive diagnosis that's mental health and adult services job.
There were lots of tears from us both after the call.dd is ready to give up,she's distraught that there is no help coming to get her thru her a levels in less than three months and nothing to be in place before an attempt at uni.
I don't have any answers I'm just so exhausted and frustrated going round and round in circles.
We ended up doing a 4hour walk(yes did I say I was exhausted already?but this better option than her constant need reasurance from panic that never subsides at home)she ended up at Smyth's toy shop(walking to other side of our town) and happy flapping and lots touching later she bought herself a couple fidget toys,we went to pets at home to see the rabbits,and then into town to buy boba balls at the Korean shop and she got couple other little bits.i grab couple bits things we needed too.got in 630pm
She had a shower and revved up again,currently pacing. And flapping unable to eat a cheese sandwich..
Lil zoo has had more pain,swirling tummyaches and headaches since diagnosis so assuming anxietys building there too.shes very quiet,not talking to me and generally miserable.
Da is start fret about return to school on Monday.
I am broken into pieces being turn in too many directions and I can't see a way forward at the minute.i am running in empty and don't have a plan of what to do next☹️

Zoo- Im so so sorry, I wish I had a magic wand to make it all better,
Im fuming your appointment went so badly and they are offering no support . Its ridiculous that DD2 is being pushed from pillar to post and no service is taking responsibility. We had similar for tics/tourette's diagnosis and support- pushed from Neurodiverse team- CYPMHS and back again, in the end I gave up, trying to get help. But this is so much worse as DD2 desperately needs support (as do you). Can ASD team support before diagnosis? Is he seriously suggesting DD2 goes 2 years without support??!!! I know you are running on empty but it would be worth complaining-perhaps to PALS? and also contact your MP for support, A friend of mine found CAMHS became more supportive once her MP became involved. But I realise all this takes a lot of time and energy.....
I think it might also be worth getting a GP appointment for DD- again not easy I know- and ask GP if they can refer you to psychiatry UK for diagnosis so DD2 can exercise her NHS right to choose where she has her ASD assessment -this may be a shorter waiting list. link below, they also do ADHD assessments. If GP cant refer can you ask MH health team whose waiting list she is on if she can be referred to psychiatry uk under right to choose? They have a template letter you can download to pass to GP/adult MH services.
psychiatry-uk.com/right-to-choose-asd/
As I said upthread my friends DD18 was referred by her GP for an ADHD assessment by them.
A long walk is a good way to regulate and I hope you all get a good nights sleep, do look after yourself.

DDs anxiety was really high today, hiding under covers, needed to cancel tutors. DH find this hard to accept and gets frustrated/angry. I am more accepting its a bad day-not her fault but I also beat myself up im distracted by work- new job, big work load so Im not "on it" like I usually am- i.e continually coaxing, making sure she doesnt go back to sleep etc

I am going to try that runner thank you.

I'm about to offload...
So following on from.crumby week I now need
A) to formulate a plan going forward for dd2.shes a MESS.ssrtraline withdrawal(now on day 3 of nothing) is going dreadfully.dizzy spells freaking her out ,anxiety I didn't think could go higher has etc.im at wits end what to do with her.
We need a way to get support(without going private as that's not an option)to help her regulate herself and manage this monster level of anxiety etc.currentlu shesrely on me 100%for reasurance,regulating in order to sleep,support to eat.im exhausted by it all.if she goes out(v rare) texts me constantly.i hate to say it but I'm struggling to cope with the enormity and all incompassingness of it.
B)lil zoo is sliding down a hole- since diagnosis Timmy aches increasing,feeling sick after eat more,bowels working less even with laxido.refises discuss anything except said suprised was diagnosed.adamant anxiety/worry are not root cause.no school,and they're on my back.you cannot push her as she shutdown totally and self harm kicked off.i am at a loss how to reach her as she's not even talking anymore,just occasional snap chat messages.
C) D's had had crappiest half term EVER.mo time just two if us except a trip to Asda as dd2 cannot/will not be left alone.hes suffered be put on back burner as try contain dd2 who is a big character and dominates everything esp when out of sorts/control.hes becoming very miserable and argumentative.refusing to wash/wear deodorant/do his chores.
I'm completely exhausted,joint pain and running on nothing(perimenopausal isn't helping)I don't sleep well with dd2 on me it's adding to that,and pain in morning as she's twice my weight nearly.
I help out at church(clean hall on Mondays for an hour) and attend wellbeing there with dd2 for an hour on wednesdays.i not got energy to even wash my hair.
Can someone just give me a poke with a stick or suggestions of some kind,as I reached the can't see wood for trees point☹️

Sorry for the pity party.no where in RL to dump it

Zoo you don’t need to apologise. I am sorry the appointment wasn’t what you hoped.

Here is what I would do.
For DD3:
*apply for an EHCNA - use the IPSEA model letter here.
*request medical needs tuition - email the LA’s Director of Children’s Services requesting provision under s.19 of the Education Act 1996. Post back here if the LA ignore or delay.
*apply for DLA - use the Cerebra guide.
*GP appt for a review of medication for stomach and bowels.

For DD2:
*apply for an EHCNA - use IPSEA model letter as above.
*complain to the adult mental health team, going via PALS if you need to.
*review of medication to help with sleep - she needs to sleep in her own bed or at least in bed with you but not on top of you. You can’t function and support all 3 without sleep.

For you all:
*request a carer’s assessment for you. You can’t continue as you are. Use this and this model letter. There’s 2 because your DC fall under child and adult legislation, you could combine them.
*request social care assessments for DC from adult social care and the disabled children’s team - use these model letters - child assessment and adult assessment.
*If you haven’t already moved to UC check whether you would be better off on UC as many families of disabled DC are.

Obviously you aren’t going to be able to do everything at one. Personally I would prioritise EHCNA and medical needs tuition for DD3 and social care assessments for you all.

Runner I hope DD had a better weekend.

Zoo I'm sorry everything is so hard at the moment - no wonder you are exhausted trying to cope with your DCs needs without support. I was going to suggest making a list as breaking things down and being able to tick things off helps me (I've always got at least one list on the go) but Bounce has done it brilliantly and with links!

In addition to carers assessments I wondered if you would be able to access some counselling to allow you to offload? Could your GP help with that or perhaps a charity? Also, is there a carers network/organisation locally that you could register with if not registered already? We get weekly emails from ours and they have a lot of free sessions both virtual and in person some educational and some focussing on hobbies/relaxation for carers. Volunteers are available for a chat/advice over the phone or face-to-face too. I do appreciate how time-poor you are currently though. I hope you have a better night's sleep tonight.

Muddling I find lists help too.

Zoo, Muddling’s suggestion of counselling is a good idea. Scope of mentoring to parents of DC who are recently diagnosed or undergoing assessment too.

Just sending you a massive hug zoo- unload all you want, you have such a lot to cope with, be kind to yourself and DC and pare everything back to only what you really need to do, put any expectations to one side, including school , and build in some time for self care, walks, long hot bubble bath with door locked etc, and when you feel ready work on bounces excellent list, Hopefully breaking it down into tasks will make it seen a bit more manageable and give you some agency over the situation. but a priority has to be sleep, no one can survive without it, would DD sleep beside you perhaps laying on your sides with your arm around her, instead of on top of you? I dont know how you manage to get any sleep at all like that, you are a remarkable mum and its totally understandable to feel like you can't carry on like this anymore, muddlings suggestion of counselling and a carer support group is really good- I know it must be hard to make time for yourself but, as youve often told us, no one can run on empty

No wise words as I am new to all of this but a big hug to you @Stilllivinginazoo , that sounds so tough, so much on all fronts. I hope you can take up some of the suggestions that other posters have made (and find time to breathe).

Zoo I hope today has been slightly easier and you have managed time to look after yourself.

How are things Zoo?

How is everyone?

DD15 had a good week but had a call from maths tutor who is concerned GCSE is looming and DD will be too anxious to sit exams and there's lots of gaps in her learning due to missing so much school.
I think I'd pushed it to back of my mind but actually it's only 2 months away and there's Easter holidays in middle, so not that many weeks/ lessons left....but ultimately its out of my control so will just hope for the best.....
LGO responded to my reply to their draft decision and have very slightly upped compensation from £150 to £250 a month for lost education but still seems low compared to other decisions, just seems inconsistent. But time to move on. LA still hasnt replied to my emails about phase transfer review for EHCP - DD will be 16 next month- but the tbh I was expecting to be ignored!!may as well be talking to a brick wall- very frustrating.
DD19 went to applicant day at uni, she has been offered a summer school to help her settle ( she has autism) she's refusing to go to it. I think she doesn't want to feel different, doesn't want to talk about/ acknowledge her recent autism diagnosis and says summer school sounds like her idea of hell.
It's only 2 days and I thought it may help settle and give her the opportunity to make friends, I can't make her do it if she's not willing but hope she changes her mind.

Hi I was in here a while ago but stopped posting sorry. Life is just a big mess and I really don’t know what to do about DD1, here’s the quick backstory - she’s always been a bit anxious but at the start of lockdown she broke up with her BF then struggled with exams/lockdown, went back to school but by Christmas year before last couldn’t go because of her anxiety. In the New year she kept saying she would go but she never did, said she was going to prom but pulled out at the last minute, she came on holiday with us but hardly left the hotel room room. Since then she doesn’t leave the house, stays in her pyjamas, sleeps all day and is up all night, no interest in her friends anymore, she showers but that’s about it doesn’t care about her appearance, she is so sad.

She’s 18 1/2 now so an adult but she’s been very let down by CAHMS/mental health. Firstly she saw her school counsellor, then CAHMs, she saw a different person each time and they often cancelled. Then she had to be signed off as she reached 18, so then she got a peer supporter who basically said she wasn’t right for her she was too unwell and needed more support. The GP has also been useless. She can’t get an appointment she has to phone up and explain everything to a random person down the phone they’ve said she has low mood, it’s more than low mood. CAHMs was supposed to wrote to the GP the never did. She has propranolol which im sure does nothing. We have offered to pay for a private counsellor for her but she said she’s done with counselling. So it’s a stalemate we have a very depressed and anxious 18 yo DD and no clue as to how to help her. I know she needs to want to help herself but I swing from feeling so sad to so frustrated.

sorry for the essay I’m so worried about her

sweet kitty can you not request to talk to the g.p saying you are very concerned for her wellbeing?having experience of adult services I too conclude worse than useless.the idea is help in acute crisis then back to g.p prescriptions and that's if you are lucky!☹️
Runner the frustration for you is unthinkable both on the LA front and with DD at uni.iys so hard with some things that are out of your control especially if when you can see it's in their best interests<sigh>sending big hugs.

So with a hunt for plan b here's where we are currently at-
Lil zoo now has diagnosis on record,full diagnosis paperwork and ASD pack pending in two weeks.ive contacted school suggesting a hold fire on this Thursday's meet to get her back in(ignoring threats of fines etc)until these results are in to give us a starting framework movin. Forwards and have requested ehcp,which If they say no I will go ahead anyways and get one despite her being halfway thru year 10.as I pointed out it'll secure good outcomes for post 16 also...
DS is struggling still will not having enough work that's towards certificates or other recognised goals.random do creative writing,but if you don't it's ok isn't enough.hes tired no one gets reprimanded if they do unkind things,both staff and kids complain about the school and it's adding to his negativity.hes becoming withdrawn angry and depressed as feels trapped there knowing it's the best we could find.it does have a good reputation and has much potential but as it's just been taken over by another academy it's all up in the air lots staff leaving/in training and the change isn't being taken well by thosewho have been there a long time I don't think.
Dd2 I have a callback on Wednesday with young minds for support and signposting,awaiting callback from parent carers this week ditto and local counselling service has suggested DD might like to join wellbeing group on Monday evenings,which she can access from home via a call if she might prefer and there could be other offers they can suggest as they have a varied program which covers 14-21 years olds.
Today we are in stand off about Prozac.shoujd be starting this morning,she's scared it'll be awful and fighting taking it.im frustrated to point if angry as had she done it last time <2 Xmas ago>she would be as stable as possible now either on that ir another drug,but she's a stubborn mule and I'm not sure I'm going to win this war..but I simply cannot keep trekking fir two hours as darkness Falk's around local nature reserve to help reset her.im exhausted and feel awful

@Stilllivinginazoo I am trying to convince her to see my GP who has started doing face to face appointments she is lovely and I’ve said I’ll go with her for support.

on an aside my DD2 has autism she’s never been diagnosed but I’m 100% sure she’s one of these girls who masked until she couldn’t. Anyway around 3rd year (we’re in Scotland) she couldn’t cope with school or in particular people. Covid happened which she loved. She got all As fourth year but by 5th year she was really struggling. Didn’t want to go. School were useless, the ASD teacher promised so much but did nothing because DD2 was very quiet probably. She’s very clever and gifted. The best thing we did was allow her to leave and go to college. She’s doing a course in what she loves now, with like minded people not teen boys who called her weird. She says half her class have ASD too.

@sweetkitty welcome back, dont apologise for the long post, we're always here to listen.
So pleased your GP is understanding, I hope she can recommend a change of medication or chase up adult services. Mental health services seem dire. From your description I agree it does sound like Autism.
As she's over 18 she may get a quicker diagnosis worth looking at this link
psychiatry-uk.com/right-to-choose/
I'm pleased she getting on OK at college my DD19 always much preferred college, the teaching wasnt as good but the environment was much kinder with less pressure .

Zoo- sounds like you've achieved loads! So pleased lilzoo has proper diagnosis, hope school support EHCP application but definitely apply for one regardless.
Sorry there's so much change in DSs school, its not helpful that teachers are making their unhappiness with the changes show. I hope it settles and works out.
I hope DD agrees to take medication, is she worried about side effects? Medication can take a while to settle,if she agrees to start to take it I would remove all pressure whilst it settles and accept she may not go to school.
It's really hard accepting you can make them do something they don't want to.
I hope she engages with the Monday group.
I'm sorry you feel so awful do take care of yourself. Have you thought about counselling/ carers support group? When you feel ready, dont forget bounces list up thread. You have achieved loads in past week.
DD19 has had call/ message from neurodevelopment team re her recent ASC diagnosis and possible ARFID, she won't phone them back ,message is on her phone so I can't phone them back myself, frustrating.... would like her to get as much help and support before uni as possible. But she has a part time job which she enjoys so has routine and structure and is saving for uni but still not 100% sure she will go and I'm worried about her not eating properly, her weight is very low.

Runner try not to worry too much about maths, DD can always sit/resit it at a later date. If you want to push the phase transfer review you can enforce it via judicial review. I hope you can convince DD2 to attend the summer school and either reply to the neurodevelopmental team or allow you to contact them.

Sweetkittty sorry DD1 is still struggling. DD1 can give permission for you to speak to the GP on her behalf. If the peer supported isn’t appropriate have they referred on? Or can you/DD1 self refer to the next level? Unfortunately different rules apply in Scotland and you can’t use Right To Choose to be referred to Psychiatry UK.

Zoo so pleased DD3 has a formal diagnosis. DD3 is unable to attend school due to her mental health and SEN, so the absences should be authorised. If they aren’t being, and threats of fines suggests they aren’t, you should challenge them.

I hope DD2 took the Fluoxetine and can attend the well-being group. I am not surprised you are exhausted, you can only keep going as you have been for so long.

Sorry DS is struggling. Do speak to the school about the work and behaviour. The school isn’t changing proprietor. The schools are splitting into 2 groups (covering different areas of needs) but are both still under the same overall group. The group the school is now in is a subsidiary of the overall group. Don’t forget the EHCP can remain in place until 25 or in some circumstances 26.

runner💐the frustration must be awful.teens are difficult in that we walk a fine line of mother or smother yet it's hard when we watch them struggling and there's nothing we can do☹️.sending hugs.

Dd2 did take meds.she felt sick,very angry/stressed and we have discovered she also doesn't feel sleepy at a civilised time😭nighttimes are hard as she goes into worry mode so last night was long,and having to get up for D's I'm very tired.i darent sleep in case she nods off as she's grumpy and tired now(I woke her at 830 and said that's it or you've no chance sleeping later then softened the blow with buttered crumpets😁).
She's now having a panic attack trying to do school coursework.part of me really wants to say let's forget try struggle thru these exams,but she has worked so hard and been thru so much watching friends fly wings to uni I don't want put her further back by having go in via access course,plus I'm scared without the routine of schoolwork etc she will get worse

School are holding fire on the meeting regards lil zoo for a week or so,and we hoping the ASD report be in by then to work with.HOY is meeting with SENCO today and hopefully ehcp will begin,she will be in touch how the meeting went

Hello everyone,

All your experiences have moved me and made me feel less alone. My dd2 has suffered from dreadful anxiety from about year 8 onwards, lockdown was actually a good time for her mental health, and was probably the reason she did well in her GCSEs. She is now in year 12 and struggling with her anxiety and feeling overwhelmed with life. She has missed about 20% of school due to this and associated tummy pains. She has had school counselling (no use) and is currently doing CBT which she says is more helpful. I'm waiting to hear back from the GP about getting an appointment to discuss medication options. She has good and bad days (mainly bad). Throw in the possibility she might be on the autistic spectrum (sometimes I think yes and other times I think no!) and basically, I am exhausted emotionally. She is also absolutely exhausted because regardless of whether she is autistic or not, she has masked throughout her school years never being herself. I have the option of getting a private diagnosis but again want to speak to GP first in case by some miracle I can get it on the NHS. She has asked me not to discuss it with people in RL so I am respecting that. My DH although supportive feels overwhelmed by it so disengages from the situation and doesn't want to discuss it - lucky him! So I hope you don't mind me coming on here and dumping it. Sorry. I hope we all get the help we need for ourselves and our children. Writing this down has made me feel better, and a bit more hopeful. Thanks you for listening.

okisenough welcome lovely.such a similar story to many of us.
Please feel free to talk as much as you need here.we are a non judgemental supportive little corner of MN,and some of the posters have a wealth of knowledge on benefits,education and life in general with anxious teens and ASD💐

@okisenough -welcome, you are always welcome here to offload, many of us are in similar situations.
If you do ask GP about Autism diagnosis, ask about right to choose and psychiatry uk as they have shorter waiting lists, there's a link in this thread a few posts below.
Sounds like she's done amazing getting
through GCSEs and continuing education but it takes its toll and mums often carry the brunt their emotional overload, hopefully the CBT will help her.

Thank you both for your kind words. After a very tough day, I think I'm feeling better and calm enough to get some sleep. I'm incredibly grateful to have found this thread to allow me to scream for a bit. Tomorrow I will dust myself down and get on with it. X

@1bounceforward2back thanks for the kind words, I had a nice chat with DD1 tonight I shared some of my experiences of anxiety/depression and how meds have helped me over the years. She has said that I can put on an appointment for her and I will drive her there.

Exams were terrible for my DD1 she fell apart in her prelims (mocks) then covid hit and she got teacher predicted grades in S4 GCSE equivalents, In S5 she really struggled again passed 2 Highers and failed maths again, S6 she got to November and fell apart didn’t return to school so she missed her whole senior year, friends all went off to uni and she’s been left. She hasn’t seen any of them since school too she was a popular outgoing bubbly girl too.

kitty I'm in similar circs with dd2 as she repeated year 12 and all peers went uni sept leaving her behind she's finding build up to a levels too much,not sure if she's going to make it to the end despite the hard work she's put in☹️

Prozac=not tired at bedtime here,and extra anxious.played board games til 1130 then cuddles and TV.im not happy joint pains allowed be just two hours sleep

Welcome Okisenough.

sweetkitty I’m glad DD1 will allow you to book an appointment. Could you write some notes down in preparation for the appointment? I find that helps.

Zoo can you ask for something to support DD2’s sleep. Melatonin would be worth a try at least.

It’s been a long day here.