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!

bounce is the specialist nurse with regard to D's being so poorly?u hope you find out what wrong and get him on the mend xx.
TAF was as expected,D's glowing reports of his academia etc.gets on well with staff and has good work ethic etc.no issues there.
Lil zoo didn't go.school expecting to require EWA involved soon.theyre offering change tutor group in bid ease loneliness as there are "quite a few big characters" in her tutor base...also offering reduced timetable to at least get her in a bit whilst they tread softly awaiting ASD result.
Camhs reiterated not sure what can offer of isn't commited to recovery.say she's adamant pains are physical not anxiety,so can't provide anything with that.concerms if ASD is the case there's not much can do to change her mindset on things that bother her.
Time2talk very positive about her,seems speaks most to her about music,expressed some concerns about what ASD statement might mean.
Dd2 has portrayed very together and ok,giving HOY attitude I can't do anything if won't ask for help,again concerns re attendance.

Nothing I didn't expect tbh.rough night with dd2,lay literally on my back crushing right hip into a sofa spring and thrashing a lot like fish out of water so I'm very tired today.the alternative would be send to bed and her keep lil zoo awake so case taking one for the team(as mums always do?!)been texting how hard history was and how anxious us)doesn't want be in school etc.in English exam now,so that affords me a little respite.

Welcomebeavers
Have you other DC or just the two?it's very hard when more than one goes off at same time.how are you looking after yourself?

Thank you all.

They are both attending but dd in sixth form is worse with attendance but it's more due to her gastric issues from stress as her cBt has enabled her to be stronger otherwise.

I suspect undiagnosed ADD is the cause of the anxiety from years ago.

Ds is ok but just a bit down. Seen years of his sister panicking and has started down the same road. I want him to start some therapy too. Sooner rather than later do you think? His attendance is the 88/89%. I'd love to get it over 90 but we never can!

HeBeaverandSheBeaver I think therapy, more support at school and asking the LA to make provision for DS (sadly the legislation for those unable to attend full time doesn’t cover post 16 pupils). Has DD seen a specialist about her stomach issues?

Zoo you should apply for an EHCNA for DD3 and request medical needs tuition as she isn’t attending full time. CAMHS are fobbing you off. If DD3 can’t engage with direct therapy they should look at indirect therapy. An EHCP can help with this. Have you considered requesting a move to a bigger property?


The specialist nurse was for DS’s primary medical condition. She came to assess whether they need to find DS an inpatient bed, but she was happy we can manage him at home for now and give him until the end of the week to start improving.

Would a LA make provision for a kid that has 89% tho. What would that provide?

Under s.19 of the Education Act 1996 the LA are legally required to provide provision to CSA pupils who are unable to attend school. Provision should begin once it becomes clear 15 days will be missed. The days don’t need to have already been missed or consecutive. With an attendance of 88/89% in the autumn term due to EBSA unless there’s been a drastic change DC will miss 15 days and therefore meet the criteria. You will probably have to push though.

Provision could be online, home tuition, hospital school, small group tuition at a centre… whatever meets DC’s needs. If it is suitable online works well for DC who sometimes attend school and sometimes are unable to if there isn’t a pattern to attendance as they can dip in and out of online provision as needed easily.

I do think most kids are fairly anxious to be honest at present, and puberty is an anxious time. Both my kids are and I was. One has severe disabilities and the anxiety is also severe, going to specialist schools who aren’t as good as you’d think about anxiety.

I think it’s difficult as each child has different levels and needs. My older child had a lot of anxiety however he grew a lot of resilience because he had a fairly good attitude, a certain amount of ‘come on let’s just do it anyway’ is quite important.

I feel it is important to be able to know which areas of anxiety are too much for the child, and they need support over and above the norm, and which areas of anxiety are about pushing through and feeling the discomfort but still doing the ‘thing’.

I don’t know about therapy, CBT can be good for some but not for others. Support + challenge + growing up skills. Very tricky but I do think if it’s all support and allowances the child does not grow coping skills.

Surely part of the support given is enabling DC with coping strategies? When the right therapies are provided to those with significant mental health difficulties, which is what many of the posters’ DC on this thread have, it includes OT which partly looks at daily living, independence and self help skills.

For many their anxiety and other MH difficulties go far beyond what is typical in children and young people. ‘Resilience’ is another term used by some professionals to blame parents and DC. This is an excellent piece on resilience from Dr. Naomi Fisher - a well regarded expert.

There are specialist schools that are good with MH difficulties, including anxiety. Obviously they aren’t all, but then it isn’t the specialty of them all.

Bounce, so pleased DS is able to stay at home, I hope he starts to improve by weekend, it must be very tiring and worrying.

Zoo I do hope you get a good nights sleep and I hope tomorrow is a good day

Welcome@HeBeaverandSheBeaver and @WalkthisWayUK

bounce glad D's can stay home for now.i shall keep everything crossed he stabilises/improves by the weekend.

Dd3 has access to online schooling,all work is available via Google classrooms and homework is all online via edulink.sge has no difficulties keeping up using these systems which is a thorn in schools side as they cannot complain she's behind and that's why needs to be attending in person!

Not suprised to hear camhs are fobbing us off.i have had nothing but negative experience with them in our county...

bounce I hope your ds is better soon and he picks up by the end of the week, must be an added worry for you.

zoo I'm in awe in all of you managing exam pressure as well as everything else, I hope the rest of the week is calmer and you can get a bit more sleep

runner I was off this thread for a while but I just wanted to say your dd has come such a long way, when I was first posting you were just at the point of taking her out of school, I'm sure it's been a long journey but it gives me hope to see the progress that can be made with the right interventions

Welcome beaver it's so hard re attendance figures isn't it? My ds had great figures last year but its plummeted over the last couple of months. I'm trying hard not to focus on that but it is looming in the back of my mind.

walk I agree re knowing when to push through anxiety and when to back off, that's something I struggle with, it can be hard sometimes to judge. When my ds is that anxious no interventions really help, anxiety can be so debilitating and it's a fine line judging what these dc need.

Up and down week here. I'm doing better with self care and we've implemented some changes at home re mobile phone usage, not overly strict boundaries but a focus on doing other things during the day if/when school doesn't happen.

I wanted to ask about the EHC assessment again, as far as we are aware ds has no underlying conditions such as asd causing his anxiety but I think he would benefit from being assessed as I'm aware he could be masking. Would that form part of the assessment process? I'm guessing it's a long winded route?

Zoo that doesn’t relieve the LA of their duty. The LGO ruled the school sending work home, which is in effect what putting work online is, was not enough.

Time A diagnosis isn’t required for an EHCP. Assessments such as EP, SALT, OT, psychiatrist, clinical psychologist can be part of an EHCNA, but assessments for e.g. ASD are unlikely.

Thanks for the good wishes all.

Thank you all for the welcome

@Takingtime2 -thank you😊, we have come a long way and it's hard not to lose sight of that sometimes.

I submitted a complaint to LGO, and they have just allocated an officer and I've had my first call with them.
She was very nice but I am feeling despondent about the limitations of what they can investigate.
They are unable to look at anything from the time we had the right to appeal DDs EHCP to when the appeal was decided so basically the entire 21/22 academic year.
And because we appealed for content as well as type of placement they won't look at LAs refusal to do SALT and OT assessments as part of EHCHNA.
They cant look at why EHCP was issued without a named placement or LA not consulting with or looking for schools as we appealed to tribunal.
They also won't look at lack of education provided during appeal timeframe.
They can't look at why LA didn't engage in working document process or turn up to appeal hearing as again this is dealt with by tribunal.
So basically our complaint is limited to the 9 month timeframe of EHCP process.
Frustrating!!

I'm frustrated just reading that runner

I lost my temper today.
I had an email asking for my feedback / rate out service on adult services for dd2!
I was SCATHING..including "it's like a slap in the face asking me to rate a service that basically we have had no contact with in MONTHS and are still awaiting initial assessment with the support offered being visit a crisis cafe when they've been told it needs a meds review and I'm as qualified as a cafe to give that!(and other obvious failings).wouldn't take a 0 stars so I gave 1/5 and was happy to post it onto online forum in hope SOMEONE from services sees it and gets off their bum to DO SOMETHING

Sympathies zoo.
I think sometimes for our sanity we need to step back and accept there are some things beyond our control, Ive had enough of fighting. Getting anyone to listen and take action at either MH services or Local government is certainly beyond my control!

Bounce- been thinking of you, how is your DS?

Zoo I hope you get an actual response and not one trying to placate and fob you off.

Runner they can look at things during that time that weren’t appealable just not anything you had the right of appeal to.

DS1 is just the same as at the beginning of the week, no better, but thankfully no worse. I haven’t got much done yesterday and today (other that way too much time on MN) due to how he has been. The specialist nurse is calling tomorrow again.

Sorry to hear D's still isn't improving bounce hope the nurses visit helps
runneraccepting what you can't control is HARD but a wide move it's too easy to drive ourselves crazy chasing answers that in the scheme of things won't change what's happened
Hope the weekend gives us all some respite!

@Bounce - very sorry to hear that DS1 is unwell, it must be very worrying, fingers crossed for good news soon.
*
@Zoo* - I hope venting your frustration on the feedback helped. It would be good if the powers that be read it get in touch to provide the help DD2 needs. Did you get any more sleep last night?

@Runner - I admire your tenacity! The scope on they can investigate sounds narrow when you mention all the things you can't do - I really hope there there are areas that can be looked at and answers/apologies/improvement made.

bounce how is D's now?
Muddling are you ok?
Are you doing ok runner given the amount tail chasing you've been stuck trying to sort recently?
Time/beaver are you guys hanging in there?

How's the start to everyone's week?

Hello everyone,
Zoo-how are you?
Bounce- how is DS doing? I hope he is improving.

Just emailed LGO as following my complaint they asked me to specify what injustice DD experienced as a result of the LA actions and what personal remedy we would like.
So I've just reiterated my initial letter, missed education etc re injustice and for personal remedy I asked for compensation, I feel a bit uncomfortable about it as feels grabby but weve spent a lot on reports and not sure what other personal remedy we can ask for so not sure what else I can say?? Has anyone else had experience of this?

Was stuck in traffic for 2 hours on way home from SALT due to accident on motorway and one's of DDs tutors informed me they can no longer tutor so need to find someone else. Somtimes feel caring for DD is a full time job in its own right !
But she asked to go for a walk to beach at weekend and wanted to go again today which considering this time last year she barely left her room is amazing progress 😊

Runner Hurrah for asking to go to the beach. Sorry to hear the tutor can’t continue and the journey today took so long. How did DD cope? DS1 hates being in the car.

To give you an idea we received £2k, a written apology and the LA were ordered to review their procedures and policies. DS1 was out of education far less time than DD. Some receive more, others less. You might want to read the remedy guidance and some LGO decisions.

For financial losses, do you have receipts/invoices for provision you paid for? For example, resources you bought, tuition you paid for, I think you paid for art therapy? Did you pay for anyone to supervise DD or did you lose work.

For the non-monetary losses the starting point is generally £200-600 per month of education lost. But there’s lots of factors, such as the pupil’s SEN, whether additional provision can now be made to remedy that, home life, the year DC was in etc. that influence the decision.

Thank you both for asking about DS1. He is slightly better today. He has until there is a suitable bed available to improve enough to prevent an admission. Fingers crossed. Still none the wiser as to what is actually wrong.

bounce I'm sorry to hear D's is still unwell and inpatient might be an option.whst a worry for you on top of everyday stuff.sending hugs.

Runner your determination and drive for DD shines thru.it is absolutely not grabby to ask for compensation and I wish you the very best to get a positive outcome.given how hard you have fought for everything with you LA it is indeed considered a full time job and it makes me furious you have had to.education shouldn't be exclusively targeted for standard families,if anything it should be easier for those that need help.it shouldn't be all about the cost😤

DS has his review of ehcp next week.school sent home paperwork.wonderful reports from subject teachers praising ds "impeccable behaviour and work ethic" everyone had good things to say about him even tho he's only been there 3months.dping GCSE science and maths,city and guilds art I think.on third AQA.today he spent time on the bus doing his library work experience sorting the books and staff have begun debate at lunch once a week with another student (last week let everyone do it and ds
couldn't get a valid word in as there's lots of very loud characters).they were discussing prince harry and his book.ds sees no value in the monarchy,his opponent isn't pro royal per se but is fascinated by the public interest in them.ds enjoyed it I think,although he still needs to put a negative spin on everything!
Lil zoo had camhs today.is seeing cbt again next week to make decision wants to continue.ut was due to be today,so I am wondering if holding off until her assessment results are in(anytime now)
Dd2 and lil zoo went on an adventure yesterday visiting another county on the bus.just over an hour away,went off ok(dd2 very anxious but has been there before looking at uni with her dad so knew where shops were etc) they had a marvellous time and both got a build a bear,had boba etc.all good til time to come home..lil zoo refused go to a park which annoyed dd2 as she was using pip pay for the trip and didn't think it was unreasonable but bit it back and they went to the bus stop to come home DD showed her phone ticket and sat down lil zoo did same and driver mentioned a different ticket was cheaper....she froze,burst into hysterical tears and refuse speak/move....dd2 text me loads panicking.i try ring lil zoo refused answer.so told DD to tell her firmly we have catch bus to go home and propel her to a seat.she refused talk DD and cry most way home..I met at bus stop and gave her a brief hug(stiffened at my attempt)and engage DD about lovely time had and what has they bought etc in 15 min walk to house lil zoo start join in and did show me her frog and it's outfit before going upstairs....

Dd2 has exams each day rest this week.she hasn't revised)prepared as brain refuses absorb info.iys going to be a looking few days I think

Zoo, bus sounds very very stressful for DD and poor lilzoo, sounds like the driver was trying to be helpful for next the time and it backfired spectacularly. My DCs a may have interpreted it as a criticism/ told off for wrong ticket / attention drawn to them etc. I hope it didn't completely overshadow the good time they had and lilzoo will continue CBT.
What amazing feedback from school on DS- must make you glow with pride! I know it's not all smooth sailing but on balance it does sound like he is doing well there.

I hope you are getting some rest bounce, fingers crossed DS improves soon and they get to the bottom of it.

runner that's exactly how lil zoo will have interpreted it.
I am so pleased given he's only been there a few months he's picking up educationally like a house on fire.they are keen to point out slowly slowly for social side is better for him and I completely agree

Zoo I hope DS’s AR goes well. Lovely to hear he is settling in. It will take time for DS to see the positives. It is something we/professionals have been working with DS1 since he was 5. It is very slow progress. I hope CAMHS went/goes well.

DDs trip yesterday is such a step forward. Yes it didn’t finish smoothly, but a few months ago it wouldn’t have happened at all and DD3 wouldn’t have been able to be calmed as quickly. Does the bus company have extra help cards/journey assistance cards?