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!

I hope the threat works Runner. If it doesn’t and you need a pre-action letter SOSSEN are reasonably priced. If you get as far as JR itself proceedings would be in DD’s name so she can be eligible for Legal Aid in her own right. Make sure you save all your receipts and once things are sorted complain then complain to the LGO. It doesn’t surprise me the college don’t see DD2’s ASD.

DS3 is back at school today, still unwell but well enough to go. He grumbled all the way there.

runner it makes me feel so angry you have had exhaust savings to provide what your child needs when it's really down to LA to do so.im not suprised your DD went under the radar,in my experience quiet studious ones do as they're "no trouble/don't get flagged up"
Dd2 heading for a full breakdown I fear.camhs nurse is leaving Friday which I was told last Friday by his secretary after multiple failed attempts to get a call back.im lividas they've known 5 weeks she's struggling and had promised consult line an appointment within 2-3 weeks)they Said could wait to get med check with psychiatry but be a month at least .I went to g.p in the end begging to help and he's refer adult services and up from 125mg-150 given there's no external support he's concerned trying to reduce,break then build up another AD would be a risk given how fragile she is right now.
She has assessments this week and cannot remember anything despite hours trying.im getting fury and silent treatment in cycles I can't keep up with.its exhausting and I feel very helpless.
She also feels driven to visit uni places even though we are pretty sure she would crash and burn away from home which is ultra stressful for her.this weekend did reading on Saturday,Worcester in Sunday with her dad.i found parks and museums to visit at each after the tours to try and balance off the stress of it,but even the travelling threw her and she's not doing well at all crying most of the time I'm very worried about her.
School have agreed only in for actual assessments,rest week at home with a take it day by day approach in place.
DS is off now til 31st.taxi turn up today not knowing he was in school hols! I only found out today it's 2weel break.my girls only get one in our county and bit put out!hahah.hes not impressed has to return on Halloween.kids getting over excited then add in constant door knock after-school even if no decorations or lights on drives him crazy!(plus start fireworks which nudges him even nearer to the edge)
Lil zoo had dietetics friday.we have non negotiables of 3helping of dairy/calcium,1.5 l fluids and after-school and evening meals(only guaranteed eating times) must be balanced(cold by her preference is fine)1/3 each if protein,carbs and fruit n veg.fine but expensive feeding different family members different things but as she's heard it as a go ahead from a professional no chance will eat hot food now.
Dietician also suggested problem of no toileting at school Iis making it worse and needs to go sit on the loo and not go daily to increase tolerance.at that point lil zoo shut down totally I relayed this to camhs today and they are furious she overstepped her remit they are put in CBT for social anxiety as she semi engages with that in hope at some point will for toileting(in my view,when hell freezes over,but they are convinced she will slowly let them in.lil zoo is hardened to anything she's not happy about with no leeway,so good luck with that!)
I'm so tired and low it's proving so full on at the mo with them all spinning on tilted axis off the main path.i desperately need a break,but there's no chance of that so it's a case put one foot in front of the other somehow and retreat to a 20 minute sofa nap when I cannot cope anymore(most days currently) just to keep me functioning at all.it has to get better soon,right?

Zoo you really do need to look after yourself too. You are no good to DC if you don’t. Have you had social care assessments, and also applied for DLA for DD3? And if you are still on tax credits have you checked whether you would be better off on UC? Some families with disabled DC are significantly better off on UC. I’m glad the GP was helpful with DD2. Independent special schools often have 2 weeks in October now. DS1 hates trick or treaters too.

As much as I love MIL she is needing just as much handholding as DS’s at the moment with multiple phone calls and texts each day and none of the solutions are acceptable to her. She can’t manage the house and garden herself now nor is she eating properly, but she doesn’t want to downsize, hire outside help or care and doesn’t want to use a meal service.

Oh zoo, what a lot on your plate. Are you entitled to any respite care? Although I suppose that would be another battle.
I'm sorry things are so difficult atm with DD.
What an absolute mess our MH services are in. I hope referral to adult services is a speedier process than CAMHS.
It may well be that another medication would be a lot better for DD.
My DD was slowly weaned off one medication and a new one slowly introduced last Xmas, whole process took around 6 weeks. It wasn't as bad as I thought it would be but DD was not at school and we pared down everything to bare minimum. However it was totally worth changing as the new medication works significantly better .
Maybe Xmas break would be a good time to change your DDs meds - or as good as time as any, with perhaps a couple of extra weeks off school if needed?
Hope DS enjoys half term but yes I understand you probably like the respite whilst they are all at school!

Bounce - so pleased DS is on the mend but sorry about MIL issues, that's the trouble when you get to a certain age you end up parenting teens and supporting elderly parents- it's not easy!

Threat of JR has appeared to have got things moving!
Paperwork for personal budget has , at last, been forwarded. However there are a number of our requests for funding missing from LAs document .
So will have to go back but hopefully things are underway.
They have said they will pay tuition service themselves rather than via direct payment . I'm unsure whether to push for direct payment so if we want to change tuition service or use a independent tutor for some services we can.
Any thoughts bounce?

Runner the threat of JR usually prompts LAs to pull their finger out. Whether you want DPs for tuition or not is a personal choice, I think. Some prefer DPs, others prefer the LA commissioning services directly - DPs allow greater control, but there’s more work involved. Are you happy with the tuition service? Can they offer what you want/need? Do they offer the qualifications DD wants/needs? What is their communication with you like? Do you feel they have DD’s need at the fore or do you feel they have the LA’s or their best interests as a priority? (Don’t feel you have to answer the questions here, but the answers may influence your decision.) Are the missing items from the PB in section F?

I’m glad changing medication helped DD. Finding the rights medications for DS1 was what prevented a CAMHS inpatient admission.

MIL is the last of our parents alive, but DM and FIL remained independent until the end and I was NC with DF. I understand it’s difficult when your body can’t keep up with what you would like to do but MIL could help herself more, she just doesn’t like any of the solutions - it’s like having a toddler whose favourite word is ‘no’.

bounceI seem to not have took on board about MIL.im so sorry.its a very difficult and exhaustion situation.💐

I can report dd2 went in.waffled and expects to flunk russian history,not much better lit poems but she tried.
Tears in progress ahead of sociology tomorrow.

Lil zoo had a massive breakthrough today-- message me 5am tummyache and when I asked anything in particular after half hour she reply but worried about English speech on wednesday.i murdered about positive she can see that bothers her and what can she do to ease that.she then decide discuss peer support at school today and went in smiling as I told her I was very proud of her problem solving.she ended up doing speech today at lunch just in front teacher and got a merit with distinction qualities(loses marks not do in front of others) but she was pleased she at least passed!

Oh wow well done lilzoo!
I hope DD is OK zoo, she did well going in and facing her fears, I hope it went better than she thinks. I think anxiety just freezes the brain and then you can't remember anything or function properly, it's awful for them. Good luck for sociology, I really hope a more helpful medication can be found for her.

Thanks for your advice bounce, I dont have anyone IRL who really gets it and who I can talk to.
I am happy with tuition service and they can offer everything DD needs education wise. my only concern is that they are in LAs pocket and wonder if DP may give as a bit more leverage?
Sorry but your MIL comment made me chuckle. My mum has a dementia and she has reverted to childhood too. It is sad really, old age can be brutal but it is hard to look after them sometimes.

That’s brilliant Zoo. I hope DD3 can build on the breakthrough. Does DD2 have access arrangements in place for exams?

Runner sorry to hear about your DM. It’s difficult for everyone to deal with. That would be my concern with the tuition service too, but if you currently feel they have DD’s best interests at the fore rather than their own or the LA’s perhaps that’s unfounded.

Dementia is a cruel illness .my dad had it for the final 5+ years of his life.we weren't close and he didn't know who I was when I visited him.

Bounceaccess arrangements?

Access arrangements for exams are things like rest breaks, separate room, extra time.

She has a pink card can use to leave and pace outside room up to 3x.
She has a chosen place in hall by the door and option to do in library with those that need extra time and small space(dyslexic/Sen/etc)

Pleased DD has some access arrangements, how did rest of her week go zoo?

Still trying to resolve Direct payment resolved with LA.
Direct payment service has asked me to go back to KCC myself to negotiate re tuition funding and the other bits that are missing.
Very frustrating! Apparently we can't claim anything back until it is all finalised and agreed.
Discussions between me and DH if it's worth pushing for more, DH thinks we should be pragmatic. Accept LAs proposal and move on.
I wanted to push to have all provision specified in her EHCP funded, however maybe I should be picking my battles?

I think it should all be funded @Runnerduck34
(Wonder what @1bounceforward2back thinks)

DD is on uni open days today-- loads on same day now so epic trip to Hartford then colchester.online friend lives in latter,so they are currently now shopping,dad's in car..

I volunteered today at church community cafe.lil zoo did drinks again,as dd2 wasn't there D's manned toaster.never done toast before and very scared hot toast.lil zoo helped him as I was on washing up/checking thing being made in right order..

He got flustered how many slices toast wanted at a time if more than one cooked breakfast was required but he did it.lots grumbling,says hates it and it's too stressful but I think very important he pushes on with it.

its a tag on to the church food bank and anyone can have free toast and a hot drink(donation if liked,but not essential) something on toast £1 and full cooked for £2.
this is because we are part junk food project and get free bread etc that's at use by from supermarkets.i find it very hard knowing there are 300 registered users now,150 come more than once a week(food lasts 2-3 days that's given)many are working but low paid jobs and can't feed themselves or their families.

Anyway he moaned all way home and has been extra whiny since,but it won't stop me insisting we continue our 1session a month(8-11.30,cafe open 9-11)

He's been very difficult complaining all week,and I got a bit cross today he was still going on about hating school /they want me to do X,y,z and I don't like it(eat sweets/biscuits offered,some kids want him boarding,nothing bullying)and I said he really needs to learn to not focus on these and enjoy the time he has at home if he loves it so!
More grumping I was being mean!

Girls are off now,all back on 31st

Runner don’t give up now! If the provision is specified and quantified in F it must be provided. The LA need to see you are serious and will enforce DD’s rights or they won’t stop at just not funding the bits that aren’t sorted yet. They will drag there heels even more and gradually act more and more unlawfully.

Zoo I hope the open days went well. You are thoughtful volunteering, although a travesty it is necessary. I fear the demand is only going to grow.

DS1 spent all afternoon grumbling, too! All because we dared to make him leave the house. DH took him and DS3 on a bike ride - well I say bike ride but DS1 doesn’t actually ride a bike his SN buggy attaches to the back of DH’s bike.

Thanks bounce, that's made me feel better, I was starting to doubt myself!
I definitely want it all included but was starting to wonder if i was being too pedantic and if I should shut up and be grateful !

I think DH wants an easy life- he hasn't been as involved in the process in me so isn't as knowledgeable about DDs reports so doesn't see the gaps between her EHCP, our budget request and the LAs PB offer.
I also think he may just be feeling a tiny bit guilty at how much I've had to carry - he says he doesn't want it to cause me any more stress by which I think he means he doesn't want to feel any guilt that hes not pulling his weight!!

*their heels.

I can see DH’s PoV, but LAs don’t work like that. Spending time now laying the foundations will save a lot of time, effort and stress later down the line and make future dealings with the LA easier. Sadly, DC whose parents know the system and can advocate and enforce their DC’s rights get better support.

Hope everyone survived half term,and returns to school aren't too epically stressful

DS is enroute(picked up 725)
I'm sad he's spent entire holiday stressing about returning(two weeks) and is now constantly irritable and snapping.very whiny and doesn't listen/take on board anything that's said to him.

Lil zoo is a nightmare most of the time.was her 15th birthday Saturday and decided wanted go to Brighton for the day with dad.she got him to buy her books I'd said absolutely not to(graphic self harm/suicide content -a huge no given her cutting historyor graphic drug taking/incest/abuse)...
I bought her a new guitar (full size) which is a lot of money to us.
I also paid for her and dd2 to go to the cinema yesterday to watch a 15 horror film(dd2 loves them as it's "controlled anxiety")
her phones now not charging(when old one needed replacing her eldest sister offered her an old I phone which is,of course,cooler than we would get her and with that has more expensive as can't use generic accessories)and I was informed with a "I NEED a new charger".she's not speaking to me as I cannot magic the money for it instantly...

Dd2 is in a continued downward spiral.ahe text me constantly all way to cinema(walked)how anxious felt etc.is currently sleeping on me, overeating a LOT and everything reduces her to tears.asked me to help make a revision timetable yesterday and it took 4 hours and me escaping for a walk around the block when the hysterical crying got too much.i tried reverse cycling her time as she stressed over the amount time needs to be doing work/revision.she could not grasp 13+hours on a Saturday free ment 2x2 hours to study to get everything needed done done.its too much/I've no down or free time.

My MH has crumbled.i have no energy,ache constantly,cry easily and struggle to do anything.i fear my age is a large part of the problem.i spoke g.p (call)and was told as still having periods deffo not that.took bloods.ive been anemic all my adult life(v heavy periods) but that's all they say every time.its anemia.it doesn't feel anything like but I've given up asking for help now and just try plod on our one foot in front of the other.

Kids dad is no use/help.

Sorry for such a depressing post.needed a venting space

I'm sorry to hear how low you are feeling Zoo, would it be possible to see a different GP? No energy, aching joints and feeling tearful are all possible symptoms of perimenopause/menopause. Many women are in peri, still having periods and take HRT (if they choose to) - myself included. Some GP,s are woefully inadequate in this area judging be the menopause section on MN! Not saying that's what's happening with you, but that your concerns shouldn't be waved aside due you still having periods!

I hope the first day back has gone ok for everyone. DD2 is doing well and is managing so much more than she was this time last year. She achieved good passes in the 3 GCSE's she took in the summer which means she now has 4. She has been attending her new setting (only missed a couple of times) and she has made some friends even going into town with them on one occasion! Days where she is more "social" than others take their toll however, and she generally can't face people the next day due to feeling exhausted and anxious. Her cohort is small with 10 students and the focus is on building social skills, improving mental health and practicing life skills. I don't know where this will lead eventually and (unusually for me) I'm not worrying too much about it as planning next steps course-wise can wait. There's still along way to go but she's also come along way. CAMHS have agreed to do her ASD assessment even though she is now 18 (they originally told me she might have to start again with a re-referral to the adult team). Sorry for my absence on the thread in recent months but I have kept up-to-date with how everyone's doing as much as I can. It was a difficult summer with the death of my lovely Dad.

@MuddlingThroughWithoutAClue
So sorry to hear about your dad.
Pleased your DD is doing well, and got 3 GCSEs in the summer and is happy in her setting. Sound positive progress and I am so pleased you aren't worrying about next steps, I still need to give my head a wobble about this as if DD does well and manages some school work and/ or goes out I'm still tempted to think she will be back to" normal" soon but then she crashes and my hopes of her being " better" come crashing down to earth with a bump- when will I learn!!!

@stilllivinginazoo, sending you a big hug.
Please vent as much as you like.
Are you on iron supplements / multivitamins. Heavy periods left me aneamic too and exhausted all the time.
I had a uterine ablation which sorted it out, you shouldn't have to put up with them. Your GP doesn't sound that good, could you try and get appointmentwith different GP? But I know getting an appt is not easy... It could still be peri menopause which gave me aching joints. I've just started hrt but to be honest I'm not sure it's doing a lot atm!
You have soo much on, I wish I could wave a magic wand for you
So sad DS spent all half term worrying about going back and couldn't relax. I hope he had a good day today.
Happy belated birthday to lilzoo.
Honestly what was her dad thinking?! Or in truth he probably didn't think at all. I hope she's happy with her guitar that sounds like a fantastic gift. The phone drama it sounds stressful and I hope you can get a charger soon.
So sorry DD is so stressed, can school offer a mentor / TA/ senco to help with revision planning? Does she get any extra support in school?
Is she under camhs? Just wondered if medication would help her? ( sorry you've probably said before but my memory's is failing- another menopause sign!)
I do hope you have a restful evening.

Muddling condolences for your dad. It is lovely to hear DD is doing so well and has settled so well in to the new placement. Long may it continue.

Zoo you don’t have to apologise for your post. I second Runner and Muddling’s posts. Do you take anything like tranexamic acid for your periods?

Happy belated birthday to DD3. I hope DS had a better day than he anticipated.

Are you claiming everything you are entitled to and applied for DLA for DD3? If you haven’t already switched check whether you are better off moving to UC, many families with disabled DC are - if you would like me to help you check at any point feel free to ask. There’s also grants you could apply for e.g. family fund.

Asking for social care assessments would help - a carer’s assessment for you and an assessment by the disabled children’s team/adult social care for DC respectively. Here are model letters you can use:
carer assessment for you for caring for DS and DD3.
carer assessment for you for caring for DD2.
assessment for DS and DD3.
assessment for DD2.

DS1 has been grumpy all evening with the trick or treaters knocking on the door. Although I suppose it’s better than the extreme anxiety from fireworks being let off over the weekend.

Bounce, sorry to be a pita but please can I pick your brains again!?
We requested a personal budget for provision quantified in DDs EHCP
However LA have come back and said that they expect some of the support that is specified separately in her EHCP to be included within her tuition hours and not to be extra provision. So in her EHCP it says calming and anxiety reducing therapies/ strategies small group/ individual support for 5 hours a week, developing executive functioning skills, 45 mins a week by OT and organisation and planning skills 1 hour a week.
LA say all of the above should be included in her 17 hours tuition ( which we fought so hard to get!)
I phoned our LAs sen independent parent advice service and they talked around it but basically came down on side of LA as they say does she really need all her 17 hours tuition and they think it's not usual for LA to merge provision .
Tbh I'm a bit pissed off, well fuming actually! We fought so hard via tribunal to get the ehcp then it seems things we thought were included and were separate to tuition hours actually aren't?
Is this correct?? Should I go back again and threaten JR or would I not have a case??
I also received today an email from LGO regarding our complaint about EHCP process saying they are closing it as LA haven't responded yet to our stage 2 complaint we made in July! So all LA need to do is not acknowledge or deal with a complaint and LGO won't take it on.
Feels like I'm banging my head against a brick wall, just screaming in frustration.

@Runnerduck34 @1bounceforward2back thank you for your kind words. I'm doing ok - I am very lucky to have a lot of happy memories of time spent with my Dad and I still have my fantastic Mum who is coping incredibly well.

Bounce hopefully the trick of treating has finished by now (we hid in the dark hoping the house looked unappealing!) Sorry for DS1 with days of fireworks still to come.

Runner I admire the fight you've put up to get your DD what she needs - no need to give your head a wobble. It's difficult not to think that when DC have "good" day or two they will stay at that level and it's hard to gauge how they are doing overall when it's like Bounce's username!

HRT has helped me but it too a while to get the dose right and appreciate that it was having a positive impact. I had a 10 week change of product in the summer due to supply issues and various symptoms returned which made me realise I feel like "me" when I'm on the right stuff. Hope it works for you.

Runner It depends on how section F is worded. Whether you can take enforcement action is all down to the wording. Without actually knowing the exact wording I suspect the LA are trying it on.

Are the 17 hours tuition detailed, specified and quantified? What does it say will be covered by the tuition?

Obviously you might be paraphrasing on here but does section F really state “calming and anxiety reducing therapies/ strategies small group/ individual support for 5 hours a week” what therapies/strategies, by who, what is a small group?

Who is delivering the “organisation and planning skills”?

The OT should definitely be separate.

basically came down on side of LA as they say does she really need all her 17 hours tuition and they think it's not usual for LA to merge provision .

a) what the LA normally does is irrelevant, what is detailed, specified and quantified in F must be provided, and b) whether SENDIASS and the LA believe DD ‘needs’ 17 hours tuition is also irrelevant, SENDIST have judged DD “reasonably requires” 17 hours tuition (caveat being the 17 hours is detailed, specified and quantified). They don’t get to decide DD doesn’t need all the provision in F.

Personally I wouldn’t listen to a word of advice from your LA’s SENDIASS. IPSEA and SOSSEN are far better.

Don’t give up on the LGO. You don’t need to LA to respond to the complaint in order to go to the LGO. You probably just submitted too early as you should allow at least 12 weeks for a response to a complaint before going to the LGO and at the minute the LGO are preferring people give the LAs longer.

Muddling I am glad your DM is coping well. It is interesting you say it took a while to find the right dose of HRT. I trialed a few different types without any benefit, but perhaps I didn’t persevere long enough.

DS1 is asleep, thankfully.

Thanks so much bounce, glad DS is asleep hope you have a peaceful night.
The Tribunal ordered "17 hours tuition".
Didn't specify precisely what the tuition was but I assumed (?!) it would be academic teaching.
The other elements are all listed separately, have paraphrased a bit.
It's such a minefield!!!
I will try sossen and ipsea again but it's so very difficult to get through on their phone lines, haven't had any luck getting through despite repeat dialling too many times to count!
You are right re LGO, initially read the letter on my phone, so small screen and missed details, they say LA have until Friday to reply, I must havd miscalculated the dates as I thought timeframe ran out end of September.
I shall wait to see if they respond on Friday.

Thanks, Muddling- I've booked an appointment next month to review HRT as I'm not sure it's working as it should or maybe I'm expecting a miracle, I'm still an irritable old bag!

@MuddlingThroughWithoutAClue so sorry to hear about your dad💐provision and steps forward are amazing

@1bounceforward2back thankfully this year it a)rained a lot and b) people actually notes no pumpkin/decorations don't knock so D's was a least easier there.its dark when he gets home now which he hates.

@Runnerduck34 your determination to get the right support for your child will pay off in the end.im furious on your behalf with you local authority.

Tough day with dd2.she cannot grasp the time required/planning element for her exams.i have now concluded she's she overwhelmed she doesn't reset and regulate at all well,never has I've realised,but she can't hide it at all now and as a result does a bit of coursework then has frozen in headlights time followed by hysterical tears as cannot plug forward anything else.nothing helps her regulate except lay on me/very long walks and the hours spent trying everything else under the sun .akrs no difference whatsoever