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

As DS cannot attend school the LA have a statutory duty to provide alternative education under s.19 of the Education Act 1996. This provision should have started when it became clear DS would miss 15 days. Depending on individual needs medical needs EOTAS provision can take various forms such as home tuition, hospital school, online, small group tuition. If you google you should be able to find what your LA typically offer, if you can’t and would like me to look PM me where you are. However, this duty only applies to CSA pupils, so it’s important to secure further support. Write to the Director of Children’s Services at your LA requesting medical needs tuition. If the LA refuse or drag their heels come back and I can let you know how you can force the LA to provide DS with an education.

As well as the above you should apply for an EHCNA. IPSEA have a model letter you can use on their website. An EHCP is the only way of securing further support post 16, and the benefit is it can include more than just tuition and more tuition than is typically available with medical needs EOTAS tuition.

Have you applied for DLA for DS?

Thank you Leap - any suggestions most welcome. Appealing at a letter date or changing things at AR were kind of what I was thinking but in reality I'm hoping things work out without!

The LA say they can't suggest/recommend settings but always consult with the nearest FE as a matter of course (consulted with another because DD showed interest in the course there in a report from 18 months ago). The specialist provision is run by the main FE setting but not mentioned anywhere and can only be agreed and offered by the LA as they fund it. The LA have asked if it's something we would like to consider and I hope to find out more in our meeting.

This year what we wanted is in place - the LA supported the repeat via medical needs and the EHCP is written with reference to that setting BUT the mainstream is named. Lessons have increased and now include a weekly face to face at home for a key subject which is fantastic. Access arrangements are being applied for with support from CAMHS to sit GCSE's at home. I'm trying to gently encourage DD but not push as this feels like her best opportunity for sitting GCSE's this time around.

I feel I should qualify with things still feel very precarious overall and we there are plenty of lows still (and a few more highs) but I have been feeling more positive about DD's future recently than I have for a while. Getting the EHCP agreed was a huge relief as we need protect DD's education going forward and we currently have the most support in place from different agencies that we've had and it seems to be helping.

@hadaway my Ds has the same diagnosis but we're a few months down the road. DS skipped the first term mostly but returned this term. He still wants to do his Gcse's but he's missed so much school . He certainly won't get into his school sixth form as it's selective.

Muddling I’m glad you have managed to get increased hours and F2F.

Getting the EHCP agreed was a huge relief as we need protect DD's education going forward

Be aware the provision you currently have could be pulled from under you with the MS named in I and without the provision detailed, specified and quantified in F.

@Fferny1 good news your DS has returned, there is still time to make up for some of the lost learning. I’m getting my head around the fact he may leave without qualifying but know it’s for the best if he gets well.

Lots going on for everyone it seems.

I have been on to camhs again as dd is not in good place at all. School called me concerned the other day. Yesterday she was so low she couldn't get out of bed. I have another new contact at camhs 3rd in 6 months.she seemed nice, surprised we didn't have a care plan in place so has set up a call with me and dd for Friday.
Dd attendance at school is now about 40%. Have had to defer one of her private assessments for ehcp appeal as she won't cope with it. She does have clinical Psychologist next week though so hopefully that will be helpful.
I'm so, so tired.

tiktok that all sounds very exhausting,no wonder you are tired

Our TAF was,for once, positive.lil zoo is being seen by newly appointed school nurse next week and referred continence team,which apparently camhs won't do anything til they've tried.initially will need 3eeekend days worth of measuring wee incl colour and check poo to Bristol stool scale to rule out dehydration or anything medical then online presentation then onto behavioural team if that don't fix issues she started reduced time table yesterday and went in at 11,meaning willingly ate breakfast knowing had plenty of time in case needed the loo,and did go about hour before left home so was in good fettle when I drop her off
Dd2 HOY happy with her managing be present for assessments and that time2talk are involved.she has received 1point of a * for eng lit,and b in history which she revised hard for both and I'm very proud of her.sociologt and Lang didn't go very well,but you can't expect perfect at first attempt!
DS is constant snowballing now staff increased Monday and rules were added,he's no longer to use humour to manage anxiety as tends to be slightly sarcastic..the TAF saw head unit send his keyworker who is only a TA and she couldn't answer why they weren't looking for placement next year etc.all she said is we are working on his ehcp plan stuff.nothing specific
Also a second in 5 weeks staff member left yesterday,both were working with D's and helping him plough thru the presentations MS send for english.he was cross yesterday as ms are working on writing stories now they've done review literature.his strongpoint is story writing and he needs literature practise.im start to despair..
Another positive,after discounting any options in local offers of neighbouring countries leap helped find some other choices and I've sent email of D's ehcp and cover ore to one i think is perfect.62 mins from home has both exams in huge range capabilities and vocational options,lots of social skills content and adult life skills it's also small and rates outstanding by Ofsted..now I just need them to have a space in post 16 for sept and agree they can meet need.we will find out in a week or so as they do weekly reviews of applications

Zoo glad the TAF was positive. I hope the progress with DD3 has continued this morning. I would complain about the TA being sent. Is that the first one on the list I sent you? If so, I really like it. Excellent reputation. It is wholly independent so you’ll need an offer of a place. I hope they do make an offer.

Tiktokcat do you think continuing to try to attend school is making things worse?

leap yep.option number 1.i really really hope they have room for him September as I feel he could flourish there
Lol zoo came home as planned after lesson two intent go back for 5 in pink room(after lunch) then do french lesson 6.she cane out pale and in pain.hortid tummy noises on way home.managed eat lunch.felt needed to go,but couldn't.ate more,drank more.tried heat.time began ticking on and the fear needing to go at school joined in which I think stop her be able to go.i email HOY if she manages to go will be in lesson 6.still not been.had heat,painkillers,plenty fluids and more food.shes due in at 11 tomorrow,so hoping by then we have progress!if still not been by 9 and still in a lot pain and/or everything worse I will of course check with doctor etc in case it's something else.school were fine with it.they usually are if kept in the loop

Zoo I really like that school, beautiful surroundings too. Fingers crossed they offer DS a place. Their GCSE results are outstanding for a SS, academically able pupils get GCSE results just as good as their counterparts in MS. I wish it was suitable for DS1’s needs. I hope DD3 managed to attend today.

Sounds promising zoo :)

Call with camhs today to write new care plan. Dd opened up and talked about feeling suicidal. All very sad.

TiktokIts very hard hearing these things,but at least she's starting to open up which is the beginning
Leap sadly not.another difficult morning with lots of pain.i tried everything to ease her discomfort.in 24hrs she had a huge amount fluids,fig rolls,masses fruits and veggies,we tried tummy massage,stretching,gentle cycling on exercise bike(made her nauseous) slow walk around the block.i gave up and knew she wasn't going in.she finally managed a small poo around 1pm.usually another follows withing 24 hrs,she did around 9pm and whilst pain continued felt much better after that one!
In positive news she has been accepted into ASD wait list at camhs.currently around 2years to full diagnosis,AND I got letter inviting me to book continence workshop online.rang and it's Tuesday!once that's done she does the input/output sheets and then hopefully some support will commence.really pleased how fast this occured and am hoping it will finally pinpoint the areas we are lacking.i feel like I've become a walking encyclopedia of all things constipation and feel we can't do anything else physically, suspect brain gut axis problems are at the root,but I'm happy to be told otherwise if it means she's not in pain anymore

DS had bad day.head unit saying "when she gets time" will support his literature element of GCSE as ms are reviewing 3years of work now and story writing.as TA has been delivering whatever ms offers they are stuck,except for head unit who is qualified English teacher.im growing EXTREMELY frustrated.she still hasn't even acknowledged my email a week ago requesting urgent support finding D's a placement for next year
Luckily a friend on MN has AQA literature revision book we can use.i guess as I'm used to the girls outstanding school I expect more than we are getting from this placement.if they were needing extra help teachers would be bending over backwards to help,including a flurry of emails asking questions of specific things they can try to explain better,practise papers they are willing to give out and mark(adding helpful comments about improving next time by X,y,z) links to extra websites and these guides were given out to borrow,or buy at reduced cost in order to add notes in etc.at his placement he asks English ms teacher an email on Friday there's no reply til at least Tuesday as "I don't work Mondays so please don't expect instant responses"

Tiktokcat - that must have been really painful to hear, you must feel so drained but hopefully now she is opening up she will be the road to recovery.

Zoo- poor lilzoo, so hard to hear what she has to go through every day, I hope Tuesdays appointment goes well and she has a diagnosis and treatment soon. Good luck with potential new school for DS, sounds an amazing school.

Muddling- so pleased you got EHCP and things are feeling more positive.

We got some good news yesterday, LA have agreed to name SS we were appealing for.
Still need to agree changes to EHCP.
She will start outreach after Easter due to staff recruitment.
Don't know why I feel so flat rather than jubilant?!!
First baby steps are to get her back into education, she's really missed 2 years of school due to very low attendance but am also a bit concerned that SS might not meet her academic needs as she is bright.
When DD heard the news she said " she's better" now and would rather go back to her MS grammar. But I know she can't cope with it, she tried so hard for so long . She hasn't been in since mid October as counseller recommended removing pressure of daily school attendance to allow space for her MH to improve, I think we are slowly seeing glimmers of light in that direction.

runner you feel flat from the sheer effort of it all,but congratulations on the chosen placement

Thanks zoo, I think you are right.
Just tried to remove DDs clothing from a built in cupboard in her room that has developed mildew ( probably lack of airflow!)
Been trying to get it done for a couple of months but DD has resisted. So this morning just went in and emptied cupboard and all hell has broken loose!

My house is damp.yoi can get dehumidifiers?mini ones for cupboards and damp traps too from poundshops (in case have anymore problem spots elsewhere in the house)

Tiktok now DD has managed to communicate how she feels I hope it is the start of her receiving the help she needs.

Runner That is good news. I hope some semblance of calm has been restored. Feeling flat is to be expected, you are exhausted from the process whilst working and caring for DD. DD is bound to feel anxious and think the MS she knows is the ‘safe’ option. Once DD is settled if her academic needs aren’t met you could look at adding supplementary tutoring (in or outside of school) to F. As cohorts are smaller SS can adapt the level of teaching to their pupils’ individual needs, sometimes using outside tutors, online schools or arrangements with a local MS if they can’t meet needs in house.

Zoo I am glad DD has been accepted for an ASD assessment. I hope the continence service appointment goes well. DS1 is under the continence service as he isn’t reliably dry, especially at night, due to his MH. We have always found them helpful. Is DD3 taking medication such as Movicol or similar? Perhaps in the longer term having some time off school and doing a disimpaction will help, maybe using half term week go minimise the amount of school missed. If that’s not working something more such as sodium picosulfate would.

leap she has done that before in year 5 under guidance of a peadiatrician using something I don't remember to clear out then laxido protocol
She will not under any conditions take it when she knows has to leave the house.a toilet other than home won't be used,to point she's even said if her period was to start on a school day she wouldn't go to use one...I'm really hopeful they can help us

Zoo with a disimpaction regime DD wouldn’t (or shouldn’t) be expected to attend school, which is why using half term as part of the time off is probably best. Then when on a maintenance dose you should be able to get to point where DD can get into a routine of going in the morning before school or at least knowing roughly what time she will need to go.

leap she's terrified of not being able to control it if she then eats lots fruit etc too,hence not wanting take even maintenance doses

Zoo If you can convince DD to try, if DD was on the right maintenance dose BM wouldn’t be uncontrollable. On a proper regime she would be off school until you found the right maintenance dose so wouldn’t need to worry about lack of control outside of the home.

Zoo - this sounds difficult but I think it's just going to be babysteps to resolve. Hope you start making progress

1leap - thanks. We spoke with camhs and they were trying to get dd to say what helps her get out of the red zone and she said nothing. She has to wait for it to pass, which is hard.

Every day feels like groundhog day. Dd too tired or too low to get up and go to school. Me trying to negotiate, failing, sending them an email saying I hope to get her in later.
She gets so much support and still it isn't enough. She has started asking me to call camhs each day as she feels so depressed. But they won't do anything so I'm a bit stuck.

Ehcp private assessment postponed this week which doesn't help.