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!

@Stilllivinginazoo I am glad for you and dd2

@BaconAndAvocado I also agree - just being there is much better than advice or trying to fix things. I still sometimes fall into the latter if I am not paying attention to my own behaviour and the results are seldom good.

Yay! So pleased for her, particularly as she can also get support afterwards, fab news.

Zoo good news. How is DD2 following the diagnosis?

@Stilllivinginazoo great news re your DDs diagnosis, I am thinking of paying for a private diagnosis for DD2 (not my anxiety one) the waiting list is SO long after covid. She was the same hated school is doing much better at college. DD1s anxiety started during covid she was the year which was most affected by it (I’m in Scotland so don’t know how to match up) but think GCSE equivalents cancelled teachers predicted grades, then online teaching, reduced time table, masks and social distancing for her A level year again teacher predicted grades, she’s never sat an actual exam.

she’s starting to make excuses about not actually going to see the GP in person too

bounceshe's continuously overstimulated currently,I think she's very burned out trying for 4years to mask her way thru during GCSE,covid and a levels😞
She's worried it's an excuse for the fact she's tired and stressed,sad she's "different" but also relieved she's neither crazy,lazy or incompetent!!

She's gone off to London with her dad today to watch groundhog Day again(favourite actor Andy karl is lead)and is very very stressed about the trip as lots variables has no control over but has a list things to do during the day,with directions and pricing(picked free/ cheap options),5* food hygiene subways and boba shops,a packed lunch(subway will be dinner pre show) and collection distractions and fidget toys!

We are having new windows and doors as part council upgrade programme tom
Going to be bedlam and we all pretty stressed as they need clear access doors to windows- we have a disorganised cluttery space and none of us cope well lots noise or strangers in the camp!

Good luck with window and door refit zoo- having work done on the house is always stressful but even more so with ASC and anxiety in the mix, hope its done quickly and you enjoy having lovely new windows and doors.
Hope DD has a good day today- with her anxiety/asc requiring so much detailed pre planning it must be exhausting.

We have finally received DDs amended EHCP from LA, they have reduced 17 hours in cognition and learning (awarded by tribunal) to 15 hours. Their reasoning for this is the tuition centre did a proposed timetable last week and included a 1 hour guitar lesson and 1 hour mentoring/executive functioning support in her timetable and they have said they will not pay for this and have used it as an excuse to reduce her hours to 15 per week. So Im furious thats been used against us..
They have also said they will not fund the physical activity recommended by the OT or pay for PHSE to be included in her timetable as it is not a statutory part of the curriculum post 16.
Still unclear if the will fund the 5 hours in social emotional mental health in addition to the 15 hours in cognition and learning. Last year they wouldnt do this and capped it at 17 hours provision in total. If they do the same this year and cap her hours at 15 then its nowhere near enough.
So torn between being relieved that at least she still has 15 hours but furious they have downgraded her package that was awarded by the tribunal last July.
Ive just asked for a mediation certificate and at the moment think I will appeal... again... any advice bounce?

Zoo I hope the new windows and doors help in the long run, even if stressful in the short term. They should help your bills next winter. Good luck with DD’s trip. Just checking you know at most places you can get a carer’s ticket?

Runner I would appeal. Submit ASAP whilst it is still classed as a phase transfer appeal as phase transfer appeals are expedited.

DS3 doesn’t have EOTAS, but has 1hr 1:1 instrumental practice (either piano or flute) in his EHCP as he can’t access mainstream music lessons. DS1 doesn’t have music as part of his EOTAS package as he wouldn’t cope with it, but I have supported plenty of others who do. It can help with interaction, cognitive skills, mental health, emotional regulation, physio, supports OT…

PSHE may not be compulsory, but PfA is and the vast, vast majority of PSHE content is also PfA provision. It may not be statutory, but the vast majority of colleges and school sixth forms do deliver it in some form - in fact, I don’t know any that don’t to one extent or another.

Support with executive functioning is SEP, should be in F and funded.

Physical activity in and of itself may not be statutory post 16 but in DD’s case it is SEP - it can support motor skills, physio, emotional regulation, social interaction and communication, mental health, accessing the community, cognitive benefits, following instruction, PfA…

Got a call cancelling for til Friday,citing lack of crews and people not in when ment be so behind schedule
I remind liason officer I have 3asd kids that dont cope well with change,or change of plans.
Her response was but you are home so it's ok as we really can't do it Tuesday
I'm tired and worn down with other things and now kicking myself j didn't insist it was done today

Bounce carers tickets
?

Zoo how frustrating.

Most theatres offer a free carer’s ticket (or both carer and disabled tickets half price, so essentially the same thing). The criteria can differ depending on where you go. Lots accept DLA/PIP as proof, but not all. Lots of other places e.g. museums, theme parks offer free or reduced entry to carers too.

Do you know about the disabled persons railcard?

@1bounceforward2back nope,is there similar for buses too?

Also does someone need to be in receipt of carers allowance to get these things?

Some places want the carer to be in receipt of carer’s allowance, but the majority go on the disabled person’s evidence e.g. DLA/PIP or other evidence related to the disabled person rather than the carer.

Concessionary disabled bus passes are issued at a local level rather than national. The criteria vary slightly area to area, and depending on the disabled person’s needs sometimes only applies to the disabled person and sometimes includes a carer too.

Thanks for your advice bounce- I have now submitted an appeal..
Now questioning whether Im overreacting to 2 hours being removed but it does feel like thin end of the wedge...
For some reason Im pathetically grateful theyve given her 15 hours!
Continued fighting for provision wears me down.
Just feel constantly stressed...

Runner I don’t think you are overreacting, especially as DD was without education for a period of time. 17 hours is not an unreasonable amount to expect. You also don’t want the LA to think you are a pushover, otherwise they will think they can get away with removing more at the next AR.

I don't think it's unreasonable to be upset either runner

This week's been horrific

Windows and doors were due to be changed Tuesday(lots movinv and cleaning things to allow clear access unsettled the kids and exhausted me)
Called me Monday,can't come tom as lack crews we will come Friday which D's chuck huge fit over

The liason turn up 730(crew due at 8)vandals broke in and had broken loads of doors and windows and ours were amongst the carnage

I burst into tears as it took me two hours get D's midi sleeper apart yesterday and he was very upset about his upturned room...
They said would see if could get kids Windows in,even if boarded up,so the hardest bit was done

Turns out they found enough windows to fit to do them(one has a crack that will need be popped out and redone when do the rest,that'll be in 3-4 weeks once they've been recut to size)
The bang and drillings upset the cats
Dd2 and lol zoo wfmt out for a bit today but they're now stressed can't go upstairs,and once they're gone level of dust means it'll need deep cleaning still before they can

DS is very upset and desperate his room be returned up "normal'

And they'll be back in summer hols to do the rest<tears hair out>

So much upheaval zoo.
Im so sorry its all gone wrong- bloomin vandals!!
Getting house prepped for any building work then cleaned afterwards is exhausting and even more so as a single mum with SEN DC.
I hope today was better.

Reclaimed fully kids rooms today's as a screw/bolt of D's midi sleeper was lost (assume swept away)and had couple stressful days try source a replacement
Workmen were rude and super messy- I ask anything still needed moving(have a littertray in bathroom near sink)assured all's good
Hour later it's dumped on my dining table with "that fucking stinks"(I hadn't realised one had slithered into do a poop between them unpacking their gear and me herding cats into a room and shut the door)
DS /dd2 refusing use table every again(OCD issues)...

Fatigue still very bad so it's been a slow slog
Still got my room to do,and the living room,kitchen and back door will be done in couple weeks so I'm not unpacking everything prior to that given the amount dust etc left upstairs(bathroom was thick brick dust,chunk brick in sink etc)

I don't own a hoover so it's damp dust on repeat til I could get it all up but then it's trod all over stair carpet so still feels gritty underfoot😞

Pleased you got kids rooms sorted zoo, sounds very hard going. Wish I could pop round with the hoover and help out

Zoo I am glad you have sorted DC’s rooms. Have you ever applied for a Family Fund grant? They can fund a hoover.

I'm really sorry to hear that you're going through such a difficult time, but it's crucial to prioritize your well-being and reach out for professional help immediately, regardless of your concerns about work or what others may think, as there are resources available to support you through this, such as helplines or crisis centers that can provide immediate assistance.

@Stilllivinginazoo poor you that sounds horrific horrible workmen

DD started her sertaline yesterday, last time she couldn’t cope with the side-effects and stopped after a week so fingers crossed she gets on better this time

Fingers crossed for your DD @sweetkitty!
It does take a while to see benefits and for side effects to subside.
Sometimes its a couple of weeks sometimes its a couple of months. Hope its shorter end of time frame and its helpful.
Is DD now on summer break? Probably easier to start medication when there no other demands.

How is everyone? Nearly at school summer holidays!
Im finding organising EOTAS all a bit stressful atm.
Last Friday DD got up and showered ( this is big!) went to tuition centre and neither her maths or english tutors turned up. Maths tutor stuck in traffic, english tutor was scribing for an exam that started late.
DDs anxiety then went through roof, constant calls from her and im trying to sort whilst im at work.
Today was meant to be DDs first full session of mindjam and mentor has just cancelled. This is after her intro session last week started 20 mins late and we were left frantically emailing wondering if mentor was going to turn up.
It all seems really unreliable, hard work and takes up so much head space for me and increases DDs anxiety as its so hard to get her up and ready and then all for nothing!
Our LA have confirmed they wont change her amended EHCP in which they reduced her tuition hours so are appealing again...
Rant over!!!

Sweetkitty I hope starting the Sertraline is going OK. If the Sertraline doesn’t work out DD could try a different antidepressant. Things can get worse before they get better.

Runner I’m sorry you are finding EOTAS stressful. Do you have provision for someone to oversee the package? It doesn’t solve everything, but can relieve some of the pressure off organising it. It isn’t acceptable for the tuition agency to not provide the English tuition because they are scribing. Don’t give up on MindJam, though you could speak to Dan.

I’m starting to look for another HLTA for DS1’s package as we have just secured (long, infuriating story) full-time HLTA hours, but it is too much for the existing HLTA to increase their hours and take it all on.

DS3 desperately needs a break from school. He has had a really tough second half of the year.

runner how utterly frustrating with LA and tutors.is she looking forward to summer break?

Bounce D's has had enough for this school year also.the last two weeks have been more social interay then any academic stuff and he's struggled so much he's exhausted and just wants start hols now(last day we'd as they e agreed he doesn't fave to attend Thursday as it's sports day and no chance he will join in!)

Lol zoo has flunked her end of year assessments spectacularly..expended grades next summer are almost all 7+8s
Ep and history got 2,maths and science 46 in art.didmt do English or french.theyve said unless had g.p nite confirming her ASD affects her souch xant do speaking part of french exam she's expected do it all..if g.p won't give that they have no hope in hell if get her in for any exams/schooling next term so I'm super stressed on that outcome

Took dd2 out on bus today to nearby(40 mins away) small town/large village and had a nice time mooching charity shops and visiting a lovely park.her anxiety us in full force yonight,and I'm exhausted
..