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

Oh lovely.thats very HARD.
And no embarrassed faces he's in with you,you do what you have to to keep him safe and get some sleep.

Need to chase up chosen school today.i emailed them last Tuesday we are interested in placement.no response yet

That sounds very hard leap, I'm sorry new meds didn't work out. I hope you all get enough sleep, I think you just have to do whatever you can to survive and keep DS safe.

Sosen webiner was helpful, thank you mentioning it. There is clearly so many parents with same difficulties.

<Twirls to show off NC>

Runner I am glad it was helpful, sadly there’s way too many DC not receiving the support they need and are entitled to.

Thank you for not judging me. I would prefer DS1 was in his own bed but most of the time having him in ours isn’t too bad. Although he has a tendency to wrap himself around you and while DH can sleep with him sprawled all over him I can’t. When I can’t cope any longer I gradually reposition DS1 then when he notices he moves back and the cycle repeats itself. I even bought a body pillow to see if that was an acceptable replacement.

twirl D's used to be like that if he shared my bed.its almost suffocating isn't it?I'm grateful he didn't share often as it's a constant mental stress of demand even whilst sleeping.

Rang potential school today to see what's happening in regard D's placement next year.receptionist told me Tuesdays they do meetings to decide whom they will take.
I really hope we hear soon.the stress of it's becoming very difficult

Leap - you do the best you can when you can.

Busy week here. Met a targeted youth practitioner on Monday. Seemed nice and dd was happy to engage.

Camhs psychiatrist yesterday who has suggested piriton to help dd sleep until new melatonin script comes through.

Independent clinical psych assessment today. She says dd mental health is very, very poor. Balance as to whether she should be in school at all but dd says being at home gives her a void too so school is better. Cp is going to recommend a lot of psychological intervention in ehcp plan.

Lawyer today who says we should hear in next few weeks from LA. Their initial view was why should we pay for independent school when she isn't even going but they have now accepted dd just needs some stability in her life :(

Tiktokcat sounds like can very busy week but does sound like you are making progress, I hope DD is less fragile soon and fingers crossed LA will respond favourably and swiftly.

Does anyone here have any experience or advice in selective mutism?
We have just had DDs SALT report back and it indicates she has selective mutism, tbh I was surprised and a little bit indignant at first but having done a little bit of research it does make sense.
SALT have made lots of recommendations for EHCP however I am almost scared too send them to LA as her list of needs are multiplying so I'm scared it will decrease her chances of finding an education provider who can meet her needs.
No.point in having a singing and dancing EHCP but no education!
It's taken over a year so far, I haven't threatened LA with judicial review but if the tribunal process isn't resolved soon I will do.
We are treading water here with LA still no news re EOTAS and now the attendance officer from the mainstream school she is enrolled at is chasing us again. I'm feeling very despondent about it all.

@Runnerduck34 this all sounds very frustrating, and I totally get how you must be feeling. We are in almost the exact same position, with an ever growing list of needs and an ever growing list of schools that cannot meet need/take DS. Don´t know where it will all end. DS at home in bed going into his 3rd term off school. We´re going to tribunal for........not sure what. Hopefully he will just grow up and get some dead end job and that will be that.
I´m run down and got an eye infection, so I'm having a bit of a wallow at the moment. I´m appalled the attendance officer is chasing you 😕

Zoo I hope you hear from the school soon. It is suffocating and takes you right back to those baby/toddler days of being touched out.

Tiktok I hope the piriton works, and DD isn’t one that it makes hyper. If it doesn’t work try promethazine. If DD can’t cope with school but needs school for the structure and routine what about hospital school or medical needs tuition in their centre/somewhere outside the home, or a mixture of school and hospital school or medical needs tuition.

Runner DS1 has SM among his huge list of diagnoses. I think someone else on the thread has a DC with SM too, as I think we have spoken about it previously, but I can’t remember who.

Personally, I would send the report.

I'm scared it will decrease her chances of finding an education provider who can meet her needs.

An alternative perspective is an accurate picture of DD’s needs means the LA are less likely to succeed in naming an inappropriate school, and you are more likely to be able to evidence the need for EOTAS. Also, DD has the same needs regardless of whether you share the report or not, far better to have those needs recognised and supported than not. Unmet needs lead to placement breakdowns and trauma. An all singing and dancing EHCP would ensure the education would be provided, and would be enforceable if the provision wasn’t forthcoming. If that isn’t the case it isn’t a good EHCP.

BTW Runner, have you seen your LA’s SEND deficit and the nonsense the SEND Director of your LA has been spouting?

twirl not sure if you can help,or any other ASD mums-dd2 has been in what u can only describe as sensory overload for past few days.her clothes feel all wring,she's hyper anxious and is very hard to ground AT ALL.
Her weighted blankie has given her some relief,as has walking over local nature reserve with me taking photos to focus her attention and watching wild bunnies graze
School has become impossible,Tuesday she held in there but was literally fighting to keep anxiety undercontrol and her tics and achieved nothing academically.yesterday she sat in student services all morning after tears in the loo,and again sat in a lesson trying to contain tics not learning she couldn't face going today as exhaustions burning her out also.
I tried ringing camhs to chase up meds review and reception told me date was pending and was usually within 2weeks I'd get notification,then two week wait til app,so four weeks away!I tried consultation line after on hold 20 mins I was told it was too busy leave message and we attempt reply in 72 hours.not helpful as need help NOW.
Shes not a risk to herself or others so crisis lines out,so rang mental health hub.
They suggested asking school for allowing her leave site at lunch to walk,to see if it's possible defer one subject a year,complete 2 then the other giving her more time and possibility of using a crisis cafe.as she was 18 in April they don't understand why she's not already under adult services,and suggested should she be unable to cope feelings to request g.p offer short dose tranquillisers just to take the edge of for a day or two.
Is there any advice from the collective here we can try?she's trying to go up to bed at 10 and journal then sleep ,which whilst in school did as so exhausted mentally and physically,not sure about tonight as didn't go in and knows I'm out tom with lil zoo and continence meet so will be home alone(trigger)if can't cope with school .
We've tried ice play,wet fave,various smells.they pull her back briefly them she rockets off again at slightest thing

Im so sorry zoo, sounds so stressful and difficult. I wish I had some words of wisdom, it sounds like you are doing everything possible. When DD is overloaded she needs time out to chill in her room, all expectations removed, this phase can last weeks if shes really burnt out. From what you say being home alone would be difficult, you have so much on your plate and so many needs to juggle it must be so exhausting but Im in awe of everything you do for all your DC. I hope tomorrow is better than you fear, Good luck with lilzoos appt.

Twirl, thank you for your positive perspective, you are right in theory it should make case for EOTAS stronger, just feeling jaded by it all, of course EHCPs should be enforceable but its not easy to achieve that.
I did see the news story, just so depressing that man is in charge of our childrens education in Kent, with that attitude and the massive deficit no wonder we havent got anywhere with DDs provision

@MackenCheese Im sorry you are in the same position, its so hard to find a school, there simply isnt enough provision, it is demoralising when we just want our DC to be able to access an education, would you consider trying to obtain EOTAS if you cant find a school? I hope eye infection clears up soon. Wallowing is totally allowed.

Yes, we would consider EOTAS. Do we need to have that sorted before the tribunal date in July if there are no schools? Ds says he has no hobbies, so apart from schooling I can't think what to ask for in an EOTAS package. An annual travel card so that he and I can travel the whole of the London tube ( one of his interests) seems the only idea I can come up with! 😂

Zoo I hope DD2 managed to sleep last night. Good luck with today’s appointment. If what you are doing is providing brief relief but isn’t lasting I would keep on what you are doing but for longer/more frequently/more changes of task (whichever you think is most appropriate). Sensory overload is DD2 in fight or flight mode (freeze, collapse and fawn reactions are also part of the same response). Also look at things like brushing, swings, bouncing, gym ball, heavy lifting.

I think you need to apply for an EHCNA for DD. The placement is at risk of breaking down and without an EHCP DD won’t get medical needs tuition and the school may be reluctant for DD to drop to 2 A levels due to funding as she would no longer be classed as a full time student. This would also have a knock on effect on your child benefit and CTC/UC.

I wouldn’t be rushing to transition to adult care, it is no better than CAMHS, and in many areas support is even less - another reason to go down the EHCP route to secure more MH support.

Asking the GP if they will prescribe something else short term or adjust medication dose would be a good idea. As DD2 is 18 there shouldn’t be too much of a problem doing the former, they may not want to do the latter with DD2 being under CAMHS.

Runner No, not east to achieve, but it is possible.

Mackencheese if you are wanting EOTAS and Tribunal is in July you need to start building evidence for that now. What is included in an EOTAS package is child specific but could include tuition, therapies (OT, SALT, MH…), other provision (care farm, forest school, Mindjam, cooking lessons, music/drama lessons, ELSA), sports (gym membership, trampolining, football, swimming…), mentor/TA, equipment (technology and assistive tech, sports, sensory OT…), budget for accessing the community, sundries budget, Subscriptions (magazines, boxes (e.g. MEL science, technology triumphs), NT, English heritage…), travel costs to enable delivery of package, professionals’ time for e.g. annual review, termly reviews… The possibilities are endless.

Having said that, I thought you wanted Swalcliffe Park (I post on the SN boards under another name)?

Thank you so much @1twirlforward2back. that is a helpful list which I will look into. I tried broaching the subject of horse riding , but he looked at me like I´d sprouted another head! I can totally see why SN parents give up work. This is a full time job with all the correspondence/phone calls. I fully accept that I am starting to suffer burnout with holding down my job as well.

You´re right. SPS looked at his outdated EHCP and said they cannot meet need because of his behavior (which is not an issue now since his dad moved out btw) and steered us towards other schools. We were very disappointed to say the least. They are a non maintained special school, but felt his behavior is over and above what they can manage. They are still named on the draft EHCP atm as we don`t yet have an alternative. Should we remove it?

Having said all that , and for once had a lucid conversation with DS I´m not sure if SPS would be a good fit after all as it is so tiny and he wants a larger cohort so that he can pick his own friends (not sure that exists - having researched special schools, they all tend to be small.)

So yeah, we have got a bit of time to look at EOTAS. I hope it costs the LA a bloody fortune after all we´ve been through....

A draft EHCP should not name any school or type of school. How are you appealing if you don’t have a finalised EHCP? If you still want SPS then I would pursue that, as they a NMSS the LA can and must name them regardless unless of one the exceptions mentioned on the other thread apply. SS cohorts are generally smaller, and Swalcliffe is overly small compared to others. The one problem with EOTAS is it is likely to be more piecemeal and friendship cohorts smaller.

Sorry we do have a finalised EHCP which we are appealing, and has the old mainstream named on it. Since then we have a proposed plan that the LA are using as working document and SPS is named on that as that is where we wanted to go.
DS just wants to go to a mainstream school and part of me wants to jack the whole EHCP/legal thing in (which is costing a bomb btw) and send him to a new school and hope for the best. The thought of him being here at home with or without EOTAS for years fills me with dread. I don't like his company that much, he is hard work!! Has anyone ever just done that when they have realised that the list of "needs" prices them out of the realm of even the special schools?

Is SPS named in the WD as your proposed amendment or have the LA agreed to it?

DS just wants to go to a mainstream school

This is DS’s lack of insight and anxiety talking. If he could manage that he wouldn’t have been out of school for 2 years. MS is also the ‘known’ and the unknown (SS) is scary. DS is still going to have the same needs whether you carry on with the appeal or not. Not carrying on isn’t going to mean DS’s needs are any better supported, and unless you can disengage from ‘the system’ completely and afford provision/therapies etc it is likely to result in more stress long term.

When things have been difficult with DS1 there has been many a time I have considered disengaging but the things that keep me going are knowing we could never fund their healthcare or DS1’s EOTAS package (in excess of £100kpa) so we couldn’t disengage completely from the system, while we could just about fund DS3’s EHCP support he needs to be in a school. Also, DS’s will need life long interaction with the healthcare system and it is better to have their needs recognised now while they are children than it will be as adults. And finally, it is stressful while securing the provision and then enforcing the provision once it is up and running it improves life for everyone.

Thank you for your reply @1twirlforward2back that makes sense. As I said, I´m probably worried and burnt out. Yes, the LA have agreed to SPS on the WD although we have just got the appeal response from the LA lawyer trying to steer us back to the mainstream school he wont attend (a school which has already turned him down from joining the ASD ARP aaaargh!!)

DS has been in good form these last couple of days, as I basically told him that I am not coping with the stress of him at home, all the school rejections and all the uncertainty. Up to now I have been stoic and calm, but he was horrible to me and I just let him have it about how I was feeling. Maybe some empathy is finally developing. Thanks for sharing about your DS. My son needs to be in a school too, for all our sakes.

Zoo - if she is in such overwhelm then let her withdraw for a bit and take all pressures off her. We find it was genuinely the only way dd could recover in any way. At its worst we were having multiple meltdowns on any day. Now she has a better steer on how to manage it.

Twirl - after the pirition she slept 16 hours straight. She is a bit reluctant to take it now so she thinks her choices are 3 hours or 16...

She has had a good few days. We have youth practitioner coming back next week to talk to me and dh and he is trying to arrange a TAF meeting.

Clinical psychology assessment for ehcp went very well but showed just how traumatised dd is. The cp says she has very little hope at all. :(

Solicitor says LA panel should make a decision in next 2 weeks which would mean we don't need to go to tribunal. That would be a relief.

@TikTokcat I'm sorry the feedback from the CP was a bit of a blow.
MakenCheese good for you telling your Ds you've had enough. Plus his ability to be empathetic is very promising.

DS here has his Gcse's starting shortly.
His school have not given him a sixth form offer as he hasn't met the requirements ( in spite of getting 7's & a couple of 9's) So it's all dependent on his results & he's refusing to discuss going anywhere else. I was hoping there would be some leeway on behalf of the school, as he's missed so much & done amazingly well considering, but no.

I think that's really rubbish of school @cantonet I hope Ds does well in his exams sounds like he is doing brilliantly with his education especially after everything he has been through .
Part of me would want to tell the school to stuff it but I know how hard change can be so fingers crossed
@TikTokCat pleased DDs had a good few days, hopefully things will move in right direction, fingers crossed LA conceed. Its such a stressful process .Its must have been hard to hear DD has little hope right now but in time things change and she will feel hopeful again one day.

cantonet how disappointing the school are being so rigid.

Life here's been very hard.dd wibbling has taken me down with her and I've had a MH crisis.struggling to eat/function and had to epic meltdowns ending in tears and going to bed this week☹️

Tuesday couldn't get hold a g.p,the prescribing pharmacist was waste if space frankly,saying take more promethazine- it's not working you aren't listening to me.ot try propranolol again read her notes properly that had to stop as she had breathing issues and fingernails went blue(sigh)
Try again Wednesday,spoke duty doctor who prescribed anxiolytics-started them yesterday it's up to 2week course,one or two daily.took her down a few notches once it kicked in,about 12 hours after had raging anxiety again- assume that was the wear off point?contemplating taking 8am and 8pm tonight if same happens.she was very sweaty,but other than that didn't detect any side effects.

Online parents eve last night teachers were fab,some offering options lessons streamed to quieter parts school I mentioned had email HOY and go no reply magically within hour I'd had email from her.we are talking 1215 today!all suggesting she can pass b grades if we can get support package right and how proud of her they are given her extra difficulties with her determination etc,which was a nice boost for her.

Lil zoo had continence team meet today.she forgot take senna last night.effects have been sporadic,so another week on one pill then review as periods due and that can slow things down.still homeschooling til confident regular routine is established.
DS hates school.tired,stressed there's 2kids that stir up the others to get very loud and he literally cones in exhausted and withdrawn.they realised he's not had a review so hasty ones set online for Tuesday as he leaves in less 6weeks.still can't pin down school choice over if will take him feel utterly drained for the effort.

On the me front trying to sleep more,rest more and eat.started mood tracker,journal and food diaries,with expectation I've set self no improvement in eating I have contact g.p monday.no point ask MH help last 4 attempts find a new AD gave resulted in side effects so much anxiety/agitation I had quit before 2week mark or risk harm to myself if my DC,so it's a slow steady plod on and hope for the best.

Hope you all doing ok

@Zoo it sounds as though you're going through an absolutely dreadful time.
You need to prioritise you, rather than your children. Is there anyone - family/ friends who can help to give you some time off?
Any respite care available?
Will your X step in to help?
I guess new antidepressants can make you feel worse in the short term. Plus i think you sound absolutely exhausted, with no breathing space at all. In that state it's impossible to think clearly.
Let alone have some headspace free from responsibilities in order to recoup & recover.
Please try & take care of yourself 💗

@Runnerduck I really want to tell the school to do one 😂.
But Ds will not discuss any other potential school. I guess I'll be flying by the seat of my pants for another year on exam results day. Last year was an absolute disaster for dd2 too 🤦🏼‍♀️

Zoo - sorry things are so tough right now. Don't be afraid to call mind or a similar helpline if you have no local support.

Dd das deteriorated this week. Done 3 afternoons by anxiety increased. Came out of school today and broke down to say she couldn't do it any more. LA due to go to panel about funding for this school so I ja e contacted lawyer to say we may need complete rethink. Independent Psychologist who did her ehcp assessment has recommended we has camhs psychiatrist to sign her off school.

Dd is beside herself as she thinks she won't get gcses and so will have no future. She has no friends and is lonely. Its all so very hard.

Viking if you are lurking I am thinking of you today, I hope today is as good as it can be for you.

Cantonet I am sorry DS’s school haven’t given him an offer.

TikTokCat to reassure DD, not attending school doesn’t have to mean no GCSEs, and with the EHCP provision can continue until 25 or in some circumstances 26 thanks to a recent ruling.

Stilllivinginazoo take care of yourself. I hope the call with the HOY went well.
DS1 has some emergency lorazepam and when that wears off he’s always stressed.