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

Anne can you push for a referral to a specialist eating service if your local team can’t/won’t help? Many parents at similar WFH/BMIp have had success taking DC to A&E with a copy of the junior marsipan criteria &/or growth charts.

Are the SALT/OT/CP medico-legal specialists? If so, make it known you would accept a cancellation as they may have openings if they have a case that is settled. If they aren’t EHCP tribunal experts I would look for ones who are. Have you thought about submitting an appeal with what you have in the coming weeks once you have the finalised EHCP then submitting the further assessments when you have them before the final evidence deadline?

Muddling I am sorry things are so busy for you, I hope you have been looking after yourself too.

Ds had orthoptics appointment this morning. For the first time in a long time he refused to go into school after the appointment so is today having a much needed chill day. I think the fact it was Christmas jumper day and his 1-1 having been off this week (but replaced) was just too much on top of everything else.

His mood lifted as soon as I agreed he could stay home though I know I made the right call

Hi 1leap. The specialist have all been recommended by our lawyer. She uses them all the time for legal work and they are very very good so worth the wait apparently.

The ED stuff is difficult. I don't think she would let me take her to A&E. I might email the ED team with the new stats and see what they say.

Anne I would push for a referral to somewhere like GOSH or Maudsley who both have specialist clinics. Maudsley in particular have an interest in ARFID - Rachel Bryant-Waugh is part of the team there. It is good to hear the professionals are medico-legal experts, too many parents use professionals who don’t have experience of SENDIST whose reports aren’t brilliant.

Sirzy DS3 always finds school stressful at this time of year with the changes in routine and other hyper pupils. He told the SENCO today it has been “the worst week of the school year so far”, a large part is probably down to the Christmas build up.

Hi everyone, just sending out some solidarity on this murky morning.

@AnneOfAvonlea that sounds so hard. @Sirzy definitely sounds like the right call.

DD managed an hour a day this week (after 3 hours cajoling each time) apart from Friday when she sat her GCSE Eng Lit mock ( they make them do it a year early, which I don't approve of). This was big stressor all week because exams though I actually think sitting for 2 hours with one thing to do is less stressful for her than navigating 3 lessons/teachers/classes. But I am not sure an hour a day is better than managing a single whole day and collapsing in a heap for 3 days.

In radical news though, we have had a "choice appointment" video call through from CAMHS. Not sure if this is where they say this doesn't warrant our intervention as its not at utter crisis (it was in the summer it's taken months of quiet consistent work to alleviate that but we are not at the root of it) . Also we are currently seeing a private counsellor, at what point do I let them all know that?

Also got a meeting in school on Monday with SENco and Deputy Head. And found out the local SENDIASS is apparently permanently closed. No notes or letter from the panel meeting.

Definition SENDIASS cannot permanently close. The LA are legally obliged to commission such a service. Perhaps they mean the service who provided it is no longer doing so and it has gone out to tender again. Be careful with SENDIASS, some are brilliant, but too many are not and are just the LA’s mouthpiece, regurgitating the LA’s unlawful practice. They receive LA funding (see above) therefore are not completely independent and will ultimately toe the party line. IPSEA and SOSSEN are better in my opinion, as are the SN boards on here.

I would chase the attendance panel paperwork so you have written proof of what was discussed and the inappropriateness of convening the panel in DD’s case. It will be helpful for the EHCNA, and you never know when you will need evidence in the future.

Unless CAMHS explicitly ask, I wouldn’t tell them about private care until you see what they are going to offer. Many CAMHS do not allow you to mix private care with their care and will discharge. Waiting until you know what CAMHS are going to offer allows you to make an informed decision.

Are the school arranging access arrangements for DD’s exams? Home invigilation is possible, or if in school a separate room. Rest breaks, laptop &/or extra time may also be helpful. It doesn’t sound like DD is coping in school at all at the moment, she desperately needs medical needs tuition and further SEN support.

Leap - I'm sure I've been nowhere near as busy as yourself and many of the other posters on here! DD1 is away at university, there are no school runs to go on and DD2 is reclusive and avoids interaction most of the time. I've had to work onsite for the past few weeks rather than my usual WFH/onsite combination so it feels like I've been busier as I've been squeezing admin/emails to EHCP team/schools etc in later in the day as well as rushing around to the usual CAMHS appointments. I am very fortunate that I usually fit in a decent amount of "me" time during the week and I know it's good for me. We have some cardio equipment at home that I enjoy working out on (not as often as I should) and I also play a fun musical instrument and try and practice regularly! The cupboard is always stocked with chocolate bars for a quick treat too. I am looking forward to having time off at Christmas although I am woefully behind on preparations.

The final EHCP is going to be issued any day - I don't think it is going to be as good as it should be (there weren't enough detailed reports) and we're still thinking about whether or not to appeal. It appears DD2 is going to be able to continue this academic year with the medical needs provision which is what we wanted (it's virtual 1:1 and she's just about coping). The LA are looking at FE for her for September 2022 but I am very doubtful that she will be able to attend anywhere in person by then. She still rarely leaves the house and spends most of her time in her bedroom. We are working with CAMHS to try and gradually increase what she tries to do each day with less prompting (eg getting dressed, attending to personal hygiene, eating downstairs sometimes) and also gradually exposing her to try and do more outside the house. She has had a couple of driving lessons which is a huge achievement as it means interacting with a new person! She says she feels very anxious and panicky during them but she is motivated by the thought of one day being able to visit DD1 at university.

I applied for PIP as DD2's appointee some months ago and found out this week that it's awarded to her. I was expecting her to be called for assessment so it was a pleasant surprise. She asked that if awarded the money was paid into my account to look after - it feels like quite a big responsibility and I've been clear with DD2 that it's her money. I've suggested to her that we have a look at some activities/therapies to see if anything appeals to her - something to do with animals perhaps. I previously looked at equine therapy which sounded fantastic but it was so expensive. Does anyone have any suggestions at all? She won't want to do anything if there are lots of people especially other teenagers or anything where people see her being creative - she has very low self-esteem and tries not to be seen.

Sorry I've been AWOL I had a health scare thursday.silver lining is doctor emailed their partner practise which has a vaccine centre attatched and when I had my booster D's finally got his first shot!I was very disappointed school didn't tell me when theirs were and low uptake ment only one day at mainstream anyway was given.ds is terrified of needles so they were pre warned and we saw same staff member in private room that did dd2 booster weekend before!he was super brave and made no fuss but when she said "that was so quick I bet you didn't even feel it" he replied with"yes I did it was very painful" thru gritted teeth.his directness made me smile,bless him
School have been a flurry of emails with lil zoo.anytime off now needs to be worth a doctor's visit only(in bid prevent illness we can't prove is real Luke headache,tummyache etc)turns out mufti was the trigger.she hates them.saw school counselor Tuesday and 20 mins engaging and chatting stop dead sec got more personal and wall up and 15 mins total silence before let her go.shes furious Hoy who said anything said here is in confidence told counselling a couple of things she had said
On plus she had history assessment teusday,setting herself outstanding target.she had research Nazis,write essay and then learn bullet points so could go in on assessments day and take the test.adamant if her goal,she pumped dd2 for criteria advice and how to set it out(no actual written help as determined all her own merit).she was fretting as only wrote 3 of her 5 paragraphs and forgot her conclusion and was cross and upset had fluffed it.Hoy added during emails history teacher had seen her and feedback is she met criteria of a* A-level piece.shes year 9...dd2 then had a meltdown as she is doing a level history as grades a b mostly,sometimes high c.she compares herself endlessly and lil zoo finds things effortlessly easier and has high expectations she strives to this causes dd2 a lot distress as they like same things(art,editing video clips,history,music)but she feels inferior.i pointed out lil zoo freaks and shutdown at anything can't pick up instantly yet she beavers away til does get it,and given how easily she is distracted she's working twice as hard and long and should be proud of herself.i added how she writes.her creative writing is very very good.she has thousands of likes and hits on sites she posts her work,whilst lil zoo cannot write anything unless given the idea for.i hate how much she hurts over it as she's a kind,funny,genuinely lovely person but she can't see it☹️
Dd2 went back friday-4 days off with joint pain and exhaustion post jab.ahe pushed herself Friday as was hugely panicking from having time off and fearful left til Monday wouldn't go in at all.she was drained after and went straight to bed,put so proud of her💖

I hope you are on the mend now Zoo

Zoo I hope you are OK now, and having a quiet weekend.

Muddling I am glad you have been managing to look after yourself. I eat far too much chocolate and cake. Embarrassingly I rarely use our gym equipment even though I could do with losing a few pounds.

Managing driving lessons is a lovely update, long may it continue.

Congratulations (seems wrong to say that, but in many ways apt) on the PIP. I can’t help with suggestions for spending it as DS’s (we get DLA for all 3) just goes in to the general household pot. We spend far more on their needs than we receive in DLA. Equine therapy sounds good, you can get that and other therapies in the EHCP. Once DD is more comfortable leaving home, a few friends’ DC with additional needs have loved a zookeeper experience, one also stayed overnight in a lodge where the lions come up the window.

Now DD receives PIP, think about applying for Universal Credit. If you claim CTC or UC you would need to weigh up whether you get more with DD on your claim or DD claiming in her own right.

I would always recommend appealing the EHCP.

Leap cake, chocolate, cheese and wine are my downfall! My exercise sessions don't nearly make up for the consumption of the above.

I love the sound of a zookeeper experience. Terrifying at the same time to think of DD2 being that near a potentially hungry lion! We have 2 ancient cats and DD2 lights up when she talks about them. They both have chronic health conditions and one needs injecting twice a day - I'm doing my best to keep them in top form.

PIP - it is pleasing, thank you. I delayed applying for months due to a lack of understanding re eligibility and because it took a long time to accept that DD's illness is long-term. I have read the horror stories about people being belittled at assessment and turned down so anticipated a fight. Not complaining though. I don't think DD is eligible for UC in her own right having had a quick look? We don't receive UC or CTC.

How's the weekend going for everyone?

Oh Muddling, cheese and wine feature too heavily here too.

DD is eligible for UC in her own right (if you are DD’s appointee you can apply for her), with the caveat of income/capital limits (this and social care costs are why it’s important not to save PIP in DD’s name and also think about a trust for the future). 16 and 17 year olds can apply in certain circumstances, one being “you have medical evidence and are waiting for a Work Capability Assessment”. Claimants in full time education can claim if “you have limited capability for work and you’re entitled to Personal Independence Payment (PIP) or Disability Living Allowance (DLA)”. Relevant Gov.uk page.

Is feline-assisted therapy something DD may engage with? Others with EOTAS have managed to secure dog training, kitten training wouldn’t be a stretch from that.

Leap - I read that section about UC for 16 and 17 year olds however DD is not waiting for a Work Capability assessment and although she is now claiming PIP, her education can't be described as full/time by any stretch of the imagination (the "if you're studying full time section"). I am her appointee on your advice I think (although it took a couple of goes to get it set up).

Feline-assisted therapy sounds wonderful and kitten training! I have to look into those!!

Muddling The UC criteria for 16/17 year olds would cover DD. Normally the criteria also includes 16 and 17 year olds who have a limited capability for work, but the assessments are taking so long at the moment new claimants won’t have an assessment any time soon. Here is the entitled to page.

When you apply for UC you would state DD is unable to work/seek work and submit a sick note (should be a formality getting one for someone with DD’s needs). DD would then be sent for a Work Capability Assessment where it would be decided if she could work, has a limited capability for work or a limited capability for work and work related activity. If DD was found to have a LCW or LCWRA she can continue to claim UC.

DD’s current provision may not be considered full time, but once you have the EHCP sorted it should build up to full time provision. Full time provision is less hours than many think. Guidance here.

Contact’s leaflet is good at explaining UC for young people.

Thanks Leap - I will read

Hi folks
Glad ds got his vaccine zoo

I'm having a nightmare with dd as she is constantly too tired to get up for school. I can't just demand she gets up as it will push her the other way so I end up checking in every 10 minutes in the morning until finally accepting it isn't going to work and we make a plan for mid morning or lunch. Its far from ideal as my work is suffering.

Dd has stopped taking her melatonin as she said it was making her more drowsy in the morning. I think school pushing her a bit harder when she is there to try and catch up is contributing to the tiredness so it's a bit if a cycle.

Trouble is I end up stressed every morning as a result. Her attendance is 55% and that's with a TA so clearly meets still not being fully met. I am hoping her new assessments in Jan and Feb (for the draft ehcp) help because otherwise I am just at a loss.

muddling sadly I think we are in ongoing territory.i am having breathlessness and palpitations and unfortunately they were playing up when I finally got a doctor check -over 125bpm put me on an emergency ECG monitor in surgery.I had blood drawn too by g.p as urgently wanted that done.was warned if get so breathless can't talk ring an ambulance...bloods said anemic,which I've been throughout my adult life and never had this problem before.im tired and finding this extra stress I really don't need even more stressful/tiring
I also eat too much cake and chocolate

Anne that's hard.hope now amendments are helpful
Leap lil zoo fed giraffes at a zoo a few years back.blew her mind(obsessed with them)💖

Ment be having TAF Thursday IF children first sort it..still no news from her on camhs front for lil zoo,counselling paperwork I was ment to be given to sign for dd2 and she was ment be sorting transport for D's to part-time
School have agreed part time is going to be the way forward as he's horrendous at home now(has meet this week with EHCP team),finds interaction with others very difficult(refusing to do any cooking/less formal work as the classes are noisier and less predictable)
He nearly wet himself avoiding using the loo- scared to go as others may ask where are you going
School are trying to engage him with talking skills to ease his masking,but currently not working.not helped by he talks and jokes a lot when anxious and they hadn't worked out that ment he wasn't coping til I flagged it.
Attempt at camhs after-school yesterday was disaster he wasn't at all open to ideas to help calm him after-school and session ended after 20 mins as camhs worker felt it wasn't helpful

He's constantly tired,on edge,unable to make the simplest decisions and both angry and upset.his OCD is in total overdrive and the constant i love yous are exhausting as response is required or he won't stop saying it following me around!

Dd2 is not coping work/school balance.cant keep on top of things as being on site is so anxiety provoking she's literally focussing on staying there not lessons/coursework in frees them is exhausted by time gets in and had both plus homework stacking up on her.shr has got multiple tasks set for the holidays and mocks right after so there is no break in sight for her

Lil zoo continues to be a challenge.coinsellor at school says she disassociated when asked personal things(was fine previous 30 minutes chat about Xmas etc) I've no idea why that's a flag,and need to find time to look that up

Xmas is racing towards me and I'm not ready.ds is 16 on Saturday too

Zoo how are you? I hope you are looking after yourself. Hope the TAF went well. There are lodges where the giraffes come up to the windows too. Disassociation is a way of coping with stress, anxiety and trauma. It is part of DS1’s PTSD. However, it is not a good way of coping long term. If DS is only going to be attending school part time are the LA going to provide alternative provision for the rest of the time? Can DS not do cooking etc. individually for now?

Anne I’m not surprised DD is tired, given her eating and weight. Are the LA providing medical needs tuition since DD is not attending full time?

Everyone is tired here, no moreso than DS3 who had fallen asleep by 10am this morning at school in the SENCO’s office.

Medical needs tuition hasn't been suggested by anyone 1leap. Maybe because she is so inconsistent with attendance?
She just got positive LFT :(

Oh Annethe last thing you need,esp whilst she's so weak/poorly.sendinh love.do post as often as needed lovely.we are here to listen
Leap I have one set of hands and 3 of then so alas resting isn't an option.just have to keep going
.TAF was a nightmare.i really find them hard anyway everyone dissecting my parenting etc.this one was hardest yet and I would do anything to prevent having any more as it's left me very low and disheartened
Ds- school happy with him academically,aiming for GCSE English and functional maths by end of the year.acknowlefge his difficulty/avoidance groups and are trying to encourage him to join in cooking and other "less structured" lessons purely for socialisation which he's not keen on engaging in.they asked liase camhs to work together supporting indigo moving forwards with targets and and reducing masking.only real positives tbh
Lil zoo school concerned attendance,which is fair.asd pack complete and sent,although they convinced it's a rule out and behavioural as she does things based on if feels like it in their opinion.wanted docs visit every day off,which aint gp happen now as surgery's running minimal urgent on day care now as heavily involved in vaccine program.school nurse requested.school counselling is in place but she failed to go as "didn't want to".are trying another attempt at that
Dd2 I wanted to cry.hoy was asked what support could offer as she's finding everything so overwhlming "well I teach maths I can't help her academically".implied avoided assessments til week after class didn't them(I was quick to point out we wee all I'll that week very bad cold that had us all literally in bed two days unable do anything) and complained can't do it know what chance next year when works new.again pointed out she was off from October last year,which she could easily see if checked and works already new stuff she's not done before.she didn't have camera on for zoom call and I just felt very much she finds her a waste of time/nuisance
Children's first are now withdrawing as no case for them,deferring back to schools and as both girls attend same one they will host taf meets herein.she(children's first)wanted come by next week.i declined as I don't want her anywhere near me as she makes me feel so bloody angry- nothings changed yet she's sweeping out saying her works done,when she didn't sort camhs keyworker for lil zoo,I ended up doing it myself and paperwork I was told needed to sign for dd2 to receive school counseling hasn't happened either(gave up asking) .she got really annoyed and said was just go drop some selection boxes for the kids.i declined"what's wrong with my chocolate?".I replied nothing I just prefer you didn't.she got the arse.great way to end a meeting!
Covid scaring us a lot tbh.last Xmas lil zoo was isolating as day after schools broke classmate got it(as was rules at the time she had SI)11 of 28 classmates dropped within next 10 days,incl entire friendship group/every sat with.grateful she was doing part time as think that's what "saved her" but it was still very unpleasant/stressful and when she came out on 30 th no one felt like the belated celebration we had planned and I really cannot cope doing that,or similar again.plus concerned if I get it as currently find breathing a concern whilst palpating
Girls didn't go in Friday,not due to break up til Tuesday.no doubt school will kick off royalty if I keep then off but I don't think I can face the risk of repeat last year

Morning everyone, haven't posted for a while but have been following.

Zoo- the TAF meeting sounds completely draining. Were there any positive outcomes?
Honestly don't know how you're still standing, such a lot to cope with,wish I had some wise words of advice but sending hugs, I hope Christmas offers some respite at least from school pressures.

Anne- attempting school everyday and the emotional fallout sounds all too familiar, it's emotionally draining and very very hard to do when you are also juggling work , thank goodness with Xmas holidays you can now have a break from it but I also know how very hard Xmas is if you have a DC with an ED. I still can't believe CAMHS Ed team discharged her at such a low weight, its outrageous, I would complain, worth considering also writing to MP.

DD hasnt been in school since September, still on role, after talking to her therapist we decided to have a complete break as we were failing every day to get her in and the strain on everyone was horrendous.
That has eased the pressure enormously and made life easier but I do worry about her losing contact with friends and lack of education.
Still plodding through tribunal process.
LA have now been directed by tribunal order twice to name a school - the latest deadline was yesterday, LA haven't responded but they have until Monday to object to the order so we will see what Monday brings. We are appealing for EOTAS as we couldn't find a school and DD struggles to leave the house for any reason.
Talking of which we have a non refundable OT assessment today to help our appeal case. Let's hope I can get her there!!! We are hemorrhaging money having to pay privately for support and savings now all delpeted.
Oh and her CAMHS case worker ,who offered her 4 appointments in the past year, has just left. She was actually starting to support us in the past months. Back to starting block....

Other news is DDs finally been accepted for health needs tuition and is on waiting list for a 6 week course but she will need to go to a centre every day-yikes! Let the battle commence!!!
they haven't offered outreach, waiting for them to get back to me with more details, I will be making the point about how challenging attendance at centre will be, tbh toying with idea of saving us the stress and holding out for appeal as its in February. At least EOTAS will come to get her if we are successful at appeal. But it's a risk.....

Sorry another rambling post!

Sounds tough for both of you runnerduck and zoo. No advice but just take time out for you if possible.
Dd has negative PCR so now I am confused.

Anne I hope that means DD does not have Covid, as that’s the last thing you need.

Runner good luck with the OT. Once the tribunal is settled and you have the headspace think about an LGO complaint. It is possible to recoup some of the money. We got a couple of thousand and didn’t spend as much on provision as you because DS1 quickly started as a day patient at a CAMHS unit and he was receiving some play therapy from a hospice. I know others have received more. Are you claiming everything you can, and looked at charity grants?

Medical needs tuition must be suitable for the pupil’s needs. If DD cannot attend a centre it is not suitable. If DD needs it longer than 6 weeks it must be continued.

Social isolation was a big concern of mine when DS1 stopped attending MS. It still is to a lesser extent, but I realise there are options for DS to socialise outside of school when/if he is able to, and actually he was just as socially isolated in school, just in a different way.

Zoo you are always reminding others on here they can’t run on empty. In order to look after DC you have to look after you. I’m sorry the TAF was so difficult for you. Why are school having to liaise with CAMHS? Does DS not have MH provision in his EHCP? Have you thought about placement for next year? The EHCP must be amended by 31st March.

DH and DS2 have just left for a football match. We hoped it would be postponed and thought about cancelling, but the tickets were gifted to DS2 and he was really looking forward to it.

Please, please someone help me I'm so desperate. DD(11) has emetophobia which has spun out of control. In three weeks she has gone from functioning semi-normally (attending school, socialising with friends) to being utterly immobilised with terror. I can't reach her, I can't help her, she is having multiple panic attacks a day and can barely leave the house. She told me today she finds no joy in anything. She is barely eating for fear of being sick. She looks more and more ill every day.

Where has my beautiful, fun loving girl gone? I'm so so terrified she has gone forever. She just has no fight in her.

She's seen a psychologist a few times but that was before it spiralled and was just for general anxiety. She needs specialist support and I don't know how to get it.

God I just want to go to sleep and never wake up again. I wish I had never had children just to be spared seeing her suffer like this. I can't bear it.