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

Mummy I’m glad the meeting was productive. Is DS receiving medical needs tuition, and have you applied for an EHCNA?

Zoo I hope the new arrangements work well for DD2.

Yesterday I rattled cages with county transport threatening formal complaint after day before staff promised check and ring back and didn't
Very lovely man,who happily gave his name,went on hunt for answers and 4hrs later told me transport starts Monday!
Downside- no staggered integration.school and I felt 5 half days was a big( but hopefully doable ask) transport "rules" are fulltime only and we need ehcp team to provide exceptional circumstances application ..6calls to get to echo team,to get an answer machine saying no one comes into the office now email this address.then helpful man rings back saying he's found right dept and set urgent heads up on situation.i checked email address I had was correct,no old one.grrr.he gave me correct one,and I fired out my fury in words which whilst polite made very clear I was not happy!we have been warned failure to comply with placement after 3years in limbo would be prosecuted,so not only do I need immediate fix but clarification I can keep him home until this happens
I had checked with taxi company they can do half days,yes if transport says so...
Current situation is he's to attend Monday whilst we(school and myself) bombard council in hope getting it sortedor clarification of what's going to be accepted as next steps
He's a wreck as it's been so sudden,I'm livid it's quick and not organised to support him properly

Also yesterday ed team told lil zoo that she's been allocated a case worker with camhs so they signing her off.hes in another town not ours(we do have camhs here) and I don't drive.plus we saw him on teams as interim care shortly after she was assessed and he was AWFUL.had a go at her for not answering his questions(clamming up) and sent age inappropriate worksheets about signs of depression (checklist of avoiding things including social contact,sex,time with your partner) she was 12 at the time and I complained to him he said if ore the irrelevant bits.erm why can't you make time to find the proper resources!I WILL NOT work with him again on,neither will she so complaints need to be made

Feeling sad this morning. Watching a program about the imperial war museum with DS who is a history buff, I would love to be able to take him there and he would have loved it at one point but now I know it would be way too much to even consider it let alone do it.

sirzyD's loves nature/insects and the thought natural history museum would totally overwhelm.its doesn't mean we won't ever be able to go tho.it just maybe a long time before he's ready.x

Sirzy I have to remind myself what I see as DS1 missing out, DS1 doesn’t. DH and I spend a lot of time splitting up so DS2&3 don’t miss out. We have watched that documentary, DS1 and DS3 are history buffs too. Like your DS DS1 doesn’t cope with days out to museums etc. The imperial war museum have had a few virtual things online that have been good, if DS could cope with those. We have got a ticket to a virtual spitfire tour next month - who knows if either will actually be able to partake at the time.

Zoo the NHM has some virtual things online too. It’s about time transport pulled their finger out. Does the clinic DD3 will be attending run locally, we have some that only run in one place even though the service runs other clinics in other settings? Have you looked to claim transport costs back?

leap D's has CBT online but based in our town,so I don't understand why she's been given that one.i don't know what. NHM is

Sorry Zoo, NHM = Natural History Museum. It might be the initial ASD assessments are undertaken in one area - many services changed with the pandemic, so it may have changed since DS was assessed.

Ah,I'm talking CBT she's been awaiting since march for leap the ASD one the fastest clinic for the ados test is in another town as that team work Saturdays to ease backlogs and D's was tested there(which is same clinic that they want lil zoo to attend for her CBT)

Thanks leap and sorry for the tardy response. DD is not well and the wheels have fallen off here. Re the EHCNA, I spoke to our LA and they advised that I’m welcome and entitled to apply but they feel in DS’ case that his school should be able to meet his needs without EHCP so likely that it would be rejected. So I’m going to give it until after Christmas and if the school aren’t meeting his needs, even after the meeting and the promises, we’ll go all the way with it.

Sorry Zoo, I misunderstood.

Mummy I hope DD is feeling better soon. Don’t listen to the LA putting you off, they will tell you what they want you to know and their unlawful version of the law. Even if you do apply are are rejected appeal, many EHCPs are initially rejected, but the majority of appeals are upheld.

leapmy fault,I read it back and it wasn't clear at all.hope you are ok
DS is virtually orbiting the sun fretting about transport tom

mummy that’s a standard LA response to try to get out of meeting their legal obligation. Apply yourself.

The storm has taken out the power at DS school. They are hoping It will be back on by tomorrow evening but the uncertainty is driving DS mad.

Zoo I hope today has gone as well as you could expect for DS.

Sirzy not knowing is hard for DC with anxiety. I hope you have an answer as to whether school is open tomorrow or not.

Hi all, I would just like to say thank you for this thread as it has made me feel less alone. DD1, who is just 14, has been struggling with social anxiety since just after starting high school and it is so hard. She didn't want help for a while and I'm kicking myself that I didn't help her sooner. She is now seeing a counsellor, school are trying to help her and she is also seeing the GP. Recently noticed superficial (thankfully) scratches on her arm and it is worrying me so much but she won't talk to me. She has days where she can cope, has friends at school now (which is helping) but other days are just so tough. She shuts down and I can't talk to her or help her. My own mental health is poor at the moment, because of this and other reasons. I am worried about DD2 now too who is 11 and really struggling with growing up, school etc. It's just so tough and it's good to know this is here. I'll be reading and maybe posting occasionally but thank you all x

Hi @Fluffybird. You are definitely not alone. This time last week I found this thread for the first time and it scraped me up off the floor. Everything you are saying I can totally relate to.

DD managed to go to school on Thursday for the full day, INSET Friday, so she slept, had a really nice weekend with her which is so rare - she mostly hung out me me and her little brother, doing very gentle things, it was like parenting much much younger children (they are 14 and 11, it was like when they were 6 and 3) but it gave us some time and space to engage with her. She managed a full day again today. She 's been in bed by 6 and up at 5 though it is better than it has been for months.

We have an attendance panel at the Town Hall on Friday. I emailed to say there was no way DD could attend (talk to strange people in a strange place about her mental health, on what planet) and the Attendance Officer has send a really kind email back, thankfully.

Welcome Fluffy

Madness have you spoken to IPSEA or SOSSEN? If not, try to. Why have the school referred DD to the attendance panel? I would ask the LA in writing what the purpose of the attendance panel is since DD’s low attendance is due to her not being well enough to attend. They are usually used when a child has unauthorised absences, which DD’s shouldn’t be, and are aimed at improving attendance/punctuality without prosecution. Often the end result is a plan which you are asked to sign, which I would be wary of signing without expert advice. If DD doesn’t already receive it ask for medical needs tuition when DD isn’t able to attend.

Thanks @1leapforward2back. I asked for the agenda and got quite an anodyne response, along the lines of what support could be offered to DD. We've written a letter requesting an EHCP direct to the LEA and this very evening got an email from the school SENDCO (only taken since September). We have in writing from the school that her attendances are being marked as illness/authorised so if that has changed I will be asking them to put in writing why and what qualifies them, and if they've got any understanding of the Equality Act.

I definitely won't be signing any plan. The situation is not in my control! I don't even sign homeschool agreements though!

Would IPSEA have advice? I've not heard of SOSSEN

fluffy welcome
It's been a very hard couple of years on everyone's MH with the pandemic,so try not to be too hard on yourself there.is this a long term MH thing?(please don't answer if it makes you uncomfortable) I ask as I have anxiety/depression and experience tells me it adds a lot to the load trying to look after your own needs when giving everything to everyone else
You can post as little or often as you wish.we are always here to listen
Definition what a lovely weekend!how's school this week?
Leap how are things at yours this week?hope everything's ticking over as best as it can
Sirzy hope school is back and with uncertainty passed D's is ok

Well DS did it!he got in a taxi with strangers(and a student he knows) and travelled 45 minutes to school!
He text me a lot in the day as I think they pulled back so he wasn't overwhelmed with work too,he looked very sad/tired.they were unaware and Saud he was on firm asking questions and joking etc.he came in and flopped.i git two biggest tightest hugs I've ever had a brief overview of his day and he slumped upstairs to game exhausted and overwhelmed
He came down hour later with migraine."luckily" he sees a spiralling light fir a while then has a but if a headache,no nausea or extreme pain(to date) so he lay on sofa with blankie over his face and was feeling but better by bedtime.aoetite was fine a bit.he seems very low and withdrawn
I did message school afterwards and they think he's masking ,hence exhaustion and we e agreed they will talk to him today about saying if he's not ok and how in this setting he can say I'm not coping and get help with things(still has mainstream get on with it and be ok mentality)
Today he seemed more anxious but went.he was put in a seat in boot area today as everyone was squished in back yesterday and he liked not having people looking at him(so he text anyway)
I've been sent a link for a Sen transport webinar tonight,so I'm go try find time catch that and see if we have any chance of lowering expectations of 5full days from the off as I'm very scared he will burn himself out(happened when moved to Sen in mainstream school)

Filled out ASD assessment paperwork for school for lil zoo.98%questions were as if not more applicable to dd2 but that's a whole other story
She did amazing last week then we got to Friday(inset) and she doesn't 3days extreme panic and exhaustion.begunnjng to wonder if it's anxiety exhaustion or ASD masking..how do I tell the difference??

Quick question, can I mix phenergan with apple juice? We are getting so desperate, DS didn't go to sleep until 6am this morning

Madness I would really question why the school has referred DD on. Is DH attending with you? Could one of you take minutes? Be aware even if you refuse to sign the plan can still stand. If DD can’t attend school you also need medical needs tuition as well as applying for an EHCNA. SOSSEN are another charity similar to IPSEA. I would try to speak to one of them, they should be able to give you further advice.

Always you can add it to apple juice. I know it is difficult but you really need to get DS in to a routine otherwise you are going to be in the same position in a year. As medication will only help alongside good sleep hygiene practices.

Zoo DS has done amazing. It was always going to be stressful, but once settled it will improve. Hopefully he won’t feel he has to mask so much when he knows them better and the school knows him. How many are on his transport? How did today go? Can you ask for an ASD assessment for DD2? When is she 18? Btw have you applied for DLA for DD3? Sorry for all the questions! Don’t feel you have to answer.

We are OK Zoo. DS1 is doing well at the moment with his tutoring. DS3 has got himself into a bit of a pickle at school after taking something literally then had this exchange today with a first aider after falling and hurting his arm:

FA: does it feel normal?
DS3: what do you mean by normal?
FA: does it feel like it usually feels?
DS3: it doesn’t usually feel of anything.

Sigh. Luckily I think it is ok, just bruised.

always how are things?
Leap not the most helpful first aider,but I guess each DC different and unless they know individual kids it's all far too generic

Who do I ask for assessment for dd2?she's 18 in April(resitting year 12 currently)

I don't think lil zoo would get DLA she's a pita with her ways,but I'd not class them as severe enough to get any help financially

Yesterday was worse.the car was a hatchback and he was in back day before with one other student and escort all jammed on back seat.they opt for put him in boot area in a seat yesterday which ment his spines literally against bumper which worries me if it gets pranged but he preferred it as more room and he was behind everyone so didn't feel "looked at"
He had multiple surges of panic at school he was trying sit on and came in almost in tears.two huge hugs later he retreated to game and was very withdrawn all evening,ate less food.its feels more than just get used to he's in total overwhelm

Thanks for the welcome 🙂
Madness hope the attendance panel goes ok, I'm no expert at all but it doesn't seem right that your DD and you are being put through this.
Zoo my mental health issues have been a result of the last couple of years - I took too much on, new full time stressful job, college course, then my Dad died suddenly this year, worries about DDs, and supporting my mum, my relationship is struggling, covid...it's all a mess. You are right, we need to look after ourselves so we can look after other people. I'm signed off work at the moment so have a bit of breathing space.
Your DS sounds very brave, I hope things get easier for him.

Oh fluffy what an awful year you are having,and that's without covid and DC worries

@Fluffybird that sounds so tough.I hope being signed off gives a bit of respite, but I do know its more like a quadruple shift let alone a double one with caring for parents as well as not entirely straightforward kids.

Thanks everyone for the support. @1leapforward2back DH is also coming on Friday. I asked who was attending and it is either the Early Help lead or the Welfare Office Service Manager, and the Deputy Head and attendance officer who I am in almost daily email contact with.

She managed school on Monday, couldn't do it yesterday, got dressed into school uniform today, then had a huge wobble and couldn't. Its like tomorrow, we go again....every day. Her mood is still better but it's marked that if the pressure increases even subtly she starts to withdraw.

Should I record the meeting?