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

Sorry to hear I'm not the only one struggling with getting DC in/managing school
Dd2 had worst day.only had one double lesson,restwere frees but has to do them in school.typically was in the actual lesson she had to leave for a horrendous 45minure panic attack.i was in camhs call,so spoke to her dad who was here but no help(what do you thinks making you panic)she's exhausted and utterly overwhelmed/miserable
Lil zoo tired and low as hating school
DS due back wednesday.school message me in response to email asking clarify terms in last lesson he had delivered online.i got it's harder transitioning to online.we can support these English lessons whilst he's in school.GES DONE ONLINE BEFORE AND IS FINE.THIS US PURELY THE WAY ITS TAUGHT AND LANGUAGE USED

Yes it’s a full day hopefully! He has 1-1 and can access learning support when needed. I think the change to everyone in masks has thrown him along with the uncertainty of staff.

He has a CAMHs appointment Wednesday morning but it’s with the practitioner he can’t stand so depending how tomorrow morning goes I might postpone that one as don’t think the stress would help!

Runner - if LA get barred they means the tribunal goes ahead and they don't get to present their case. The judge decides based on evidence they have

Sirzy what a day. I hope tomorrow goes better. An appointment with someone DS cannot stand doesn’t bode well. If anything like DS1 and DS3 the practitioner would likely be told as much.

Anne it is good to see you, although sorry your LA are still being difficult.

Zoo transport must meet needs and be none stressful. If DS needs 5 half days &/or an individual taxi it must be provided. Have you contacted SENTAS? I suppose the school mean if DS is there someone could help straight away rather than you following it up via email. I would reply stating, as they know, your preference is for 5 half days, where DS would be in school for the lessons.

Runner have you considered a Direct Access Barrister? The LA should not always automatically be barred even when they have missed 2 deadlines. The FTT can make unless orders, but they should not be conditional and automatic. Also, once they have been notified of the striking out they can apply to be reinstated. And it is not always beneficial to your case if they are. IPSEA explain more here. I have some more information on this somewhere I will try to find it.

If you think the EOTAS provider attending in person is essential and they will be truthful you could try to request they are summoned. However, this isn’t necessarily crucial if you have evidence (do you have anything in writing for them) as the EOTAS can be provided by other providers. And the 17 hours or whatever number of hours doesn’t necessarily need to be with one provider, in fact many are not. They can also include other things such as equipment and subscriptions. The LA cannot issue a blanket policy of a maximum of 10 hours for that provider, blanket policies are unlawful. Anyway, if is in the EHCP they must. If you have evidence DD cannot engage with more than 10 hours SENDIST won’t dismiss based on it not being enough.

DS3 has had a terrible day at school after an argument with another pupil with autism over whether if there was a cure for autism it should be offered to individuals or not. Note, offered, not forced. DS3 would bite your hand off. He hates his autism, doesn’t see it as part of him but as a condition that makes his life infinitely harder in the same way he sees his medical conditions. I am aware this isn’t a universal feeling, DD2 doesn’t feel the same, but it is DS3’s opinion and he should be allowed to express his opinion and feelings without being pushed, called ableist, a bigot and moronic by another pupil and “an ableist zealot of a boy” by the pupil’s parent. Thankfully the SENCO, HOY, DHT and HT agree, and are dealing with it swiftly. Unsurprisingly, DS3 says he’s never going back.

Runner BTW your LA have form for pressuring witnesses to drop out. I have heard various excuses professionals and services have given other parents, including ones appealing for EOTAS. I can’t find the other document I was looking for, but pg62 of the Noddy SEND guide deals with striking out.

leap what is sendas?
Poor D's.i can't believe other DC parents were so vocal/involved either!I've quickly learned everyone has quite unique opinions on things in Sen settings and it doesn't rub me up the wrong way,I find it fascinating tbh.canr blame him not wanting to return glad school are swiftly sorting it out.
DS starts back tom,the whole unit has been shut because staff shortages.theres been no work offered bar that one piece.i appreciate its new unit/ironing out stuff etc butitseema veryable total totalk the talk but not actually provide anything if substance

@leap I'm shocked that parents are getting involved in a school spat. I agree with your Ds ... I wouldn't want to go back either.

@Zoo I'm sorry your children are going through such a hard time at the moment.

@Sirzy mine would just refuse to go to the Camhs meeting. We went to a few & they were totally useless They're notorious for being useless in our county.

I'm getting upset reading about Sinead o Connors son and how he was let down b y Camhs & the unit he was on. Plus she's being criticised for causing his depression by her chaotic parenting. I'm sure this is how other parents think until it happens to them. I certainly never thought about the possibility of mental health being an issue in my family until it happened.

DS's school is online this week. He's been doing his homework & past papers after not doing any work for many months. Christmas did him some good.
Ds mixed with family, confided in dd1, met up with friends & came for some meals out. He's getting better but still fragile.
I can't put any pressure on D's so he is the one who's deciding how much work to do. We've cut down his Gcse's to 7 so far and I guess we'll see how this goes.

Zoo SENTAS is a charity who supports parents with transport problems. A poster on the SN boards found similar being the first cohort through a new SS.

Fferny some big steps forward for DS.

DS3 is in mainstream. Luckily he didn’t hear the other parent’s comments. It was made to the SENCO when she was collecting her child from reception because they had been excluded for pushing DS3. I heard as I had just arrived to collect DS3 as he was so upset and the school were worried about his port and button having been pushed (they were fine). I didn’t say anything because I couldn’t believe she actually said it.

He was really sad last night. He told me he only gave his views because he was asked directly, and him actually answering is big in itself with his SM.

DS3 hasn’t gone to school today, but has settled to some work at home. The SENCO called this morning and is going to visit later with DS3’s 1:1. They recognise the longer he is at home the more likely it is to turn in to school refusal. I am really impressed with how the school are dealing with it.

I'm impressed too @leap.
Your DS's school sound exemplary & very caring. How lovely that both the Senco & his one to one are both coming around to see him. The other boy sounds a bully and it's great the school responded immediately & appropriately.

Thank you so much for your advice leap, I will go through it properly after work.

So sorry your DS had a bad day yesterday, but so pleased school are handling it so well and being proactive, they sound amazing, I hope he manages to go in tomorrow

Leap - I'm impressed too with DS3's school's speedy action and planned home visit to you later. It is certainly harder to get DC back to school the longer they are out.

Also in awe of your vast knowledge base too which you are always kind enough to share with others.

Zoo - sorry DD2 & DD3 are struggling with school so much at the moment. Not surprised your DD2 is finding it hard to learn when she's in such a heightened state of anxiety in school - exhausting for her. When DD2 tried to go back to school for odd lessons a year ago she sat like a rabbit in the headlights waiting for each lesson to end, hoping not to draw attention to herself with no idea what the lesson was about afterwards. I hope DS school transport is sorted soon too.

Runner sorry to hear you are still wrangling with your LA to get DD the provision she needs. It's unfair that the process is made so difficult for parents. Do you know yet if they named a school?

leap it's a refreshing change to hear of a school that is totally on it and providing good care for a child.hope meet for ds3 goes well

Thanks Muddling and thank you so much Leap for taking time to reply and advise, I know you have so much on your plate.
So LA have now named a special school, its a new school that has only opened this week. It is in a community/sports centre and it looks like its just a few rooms and the most of the building retains its original use.
Website doesn't give a lot of information, clearly work in progress and phone line went through to BT 1571.
So I have reservations as its such an unknown quantity, I have emailed them to try and arrange a visit and find out more. It looks like they will be starting the school from year7 up, DD is in year 10 so worried about peer group and also academic levels as DD is bright. Slightly concerned about the building too as probably not the best sensory environment and clearly facilities are limited. Most importantly we need to know about outreach as getting DD to leave the house is hard, so lots of questions and head spinning!
LA did not comply with all of tribunal order, they named a school but provided no other details that were requested. Charity that is advising us has recommended we ask the Tribunal to bar LA,, which we have just done , however having now had time to read @1leapforward2back advice I wonder if we did the right thing!! However I doubt they will be barred.
The charity advising us has said they heard the 10 hour cap for EOTAS provider is due to new ruling/advice about illegal schools and therefore our LA has capped provision from any non DFE registered provider to 10 hours.
The EOTAS school provider we found is working towards DFE registration and becoming a special school hopefully by next academic year but at present has been told by LA it can only offer 10 hours so doesnt want to upset LA. We do have a provision outline they provided, already submitted to tribunal which is for 17 hours, tbf DD will probably find even10 hours difficult at first but we would like the opportunity to extend it without another battle.

runner i hope your provision is better than ours from the get go.how oftencan we are still finding our feet as a new unit be used!u appreciate that's fine for sc with plenty more years ahead but D's is year 11..
He's Back today
No one went yesterday dd2 total meltdowns but did pull it back after a walk toget some revision done ahead of mocks next week,lil zoo crippling gut pain and wanted poo but couldn't so refuse leave house as using a toilet elsewhere unthinkable

Sorry for your ds leap. But school are dealing with it well

Dd went into school the first few days brilliantly. Then we had an orthodontist appointment which changed the routine. Now I can't get her out of bed 😒

Morning zoo, sorry yesterday was so difficult, I hope all your DC have a better day today, sometimes I think DC can "feed" off each other , when mine was younger If one was having a meltdown it could trigger the others too and absolutely none wanted to to school if a sibling was off, I know yours are now a bit older but wonder if its the same. You must be exhausted. Good luck today.

I agree about reservations about new facility, its not up and running yet, looking at their planning permission its clearly just 3-4 rooms, toilets shared with sports centre, even her mainstream school has a sensory room but no sign of this in the new school for ASC.
They are doing functional skills such as food tech which they say is a level 2 qualification but I can't see a kitchen or cooking facilities on the plans,
No sign of a science lab ...it doesn't look like a school tbh
no idea of peer group or staff , so a bit wary atm.
Don't know if her mainstream school say they can't meet need, and we loose appeal for EOTAS does she has to go to this school,do we have any say or any other options?

I didn't...there's major lack of options here for academically able,small units
Taxi never turned up,cue meltdown

DS3 has made it into school. He was quite anxious when I dropped him off, but he’s there and is going to spend the day with his 1:1 in the SEN department. The SENCO and 1:1 were here about 40 minutes yesterday, really impressed. How the school have handled it reaffirms my belief we chose the right school.

Anne it really is 1 step forward 2 steps back. I hope DD can get back to school soon.

Zoo I hope DD2 and DD3 made it in today, and you can sort the taxi.

Runner I would be wary of a newly opened school. As I posted to Zoo upthread others have found being the first cohort through a SS doesn’t live up to its promises. Is this the one run by a parent of a child with autism? Many SS don’t look like schools, especially independent ones. Whether that’s positive or negative depends on the school.

The charity advising you should know the rules on illegal schools aren’t as simple as more than 10 hours = unregistered school. It’s not so much new rulings but tighter implementation of legislation already in place - OFSTED have been cracking down on unregistered schools. Provisions need to be registered if they are providing a full time education to 5 or more children or 1 child with an EHCP. Full time isn’t defined in law (there’s no case law either) but, for this purpose, it is now generally considered 18 hours a week. They are also generally considered full time if they provide all, or substantially all, of the pupil’s education. Further information here and here.

A few months ago a poster had a similar problem on the SN boards, with their LA about a Care Farm in their EOTAS package, for more than 10 hours though. They won their tribunal I believe. If the LA have partially complied I too doubt they will be barred.

If the tribunal name a SS you don’t want DD to attend/you want to EHE and DD is registered at the school you would need to ask the LA for permission to deregister as it’s a SS. This is a formality and unless there are serious concerns permission should not be unreasonably refused. But DD doesn’t automatically become registered purely because the school is named in I, only from the "expected first day of attendance" i.e. the first day you have agreed or notified the school DD will attend.

No taxi.wfh today.ment to be in friday.longer he's not actually in harder will be,esp as he's still be expected do three alternative days not 5half ones.losing will to live.why does everything have to be such a bloody battle

Sounds like progress in small steps zoo.

I called mediation today to ask for certificate so we can appeal over provision content. Sigh.

Dd had a good few days and we got ahead of ourselves. Today she stayed in bed all day

Anne, one step forward two steps back is often the way, with DD is she has a good day I cant help think woohoo we're on the up and when it comes crashing down again it makes it harder, good luck with EHCP.

Zoo Im sorry taxi didnt show up, that is absolutely cr*p. Do you have a way of contacting taxi firm/driver directly? I dont know why everythi g has to be such a bloody struggle!

Leap, so pleased your DS made it in. Thank you for your advice and links, going to read them now, yes new school is the one run by a teacher/parent with an ASC son, did I mention that upthread or have you heard something???
I think there is a chance tribunal would allow more than 10 hours, its just so complicated!
Had a call form previous senco who we had a good relationship with and now is in new role at LA doing a hard sell on school LA have offered, I dont know who to believe and trust.
Also charity supporting us have managed to get a meeting with the independent specialist school who said they couldnt meet DDs need as they dont have outreach and we couldnt get her there- they are now saying they can do outreach and think they can meet DDs needs.
Good news but head is spinning and trying to see wood for the trees

Anne I hope DD manages to get out of bed today.

Runner I’m not surprised your head is spinning. Don’t let the LA’s hard sell sway you if you don’t think the new school is right. The school is always going to be easier for the LA than EOTAS. No, you didn’t mention it I don’t think, I recognised it from your posts. They do have access to the kitchen. They have been trying to set up for a while, originally as a free school but there were problems. I don’t know much about it, other than if DD is capable of more academic work I don’t think it is suitable, and I don’t see how they can offer the level of MH input DD needs.

DS3 had an OK day yesterday and has gone in to school today again. The plan was to attend some lessons and spend some lessons in the SEN department with his 1:1. Although I have had an email from the DHT to say DS3 hasn’t managed any lessons this morning but did have a discussion about particle physics with them and concluded their discussion by saying school would be better if it didn’t have other pupils.

Leap - you just made me laugh out loud at your sons conversation about particle physics! And I so need to laugh right now.
I hope DS is back in lessons soon, the school sounds amazing.

My head is still spinning, I spoke to headteacher of LAs named school this morning, he seemed really committed but also open and honest, upshot of the conversation is that we both agreed school cannot meets DDs needs and he was going to email LA and retract his offer.
Roll on to this evening to say that actually he cannot retract his offer without us visiting the school as it would not look professional on his part, former senco who is now working for KCC cc'd in and have made joint appointment on 2 weeks time so we can visit together!!
Flippin annoyed to say the least.
Had a meeting with headteacher of independent specialist school who originally said they couldn't meet need they are going to put together a bespoke package of outreach with slow gradual integration to school and are prepared to go to tribunal as our witness to fight for it.
So we have submitted a form to request a change from EOTAS to specialist school with outreach.
Hope we have done the right thing ,honestly so exhausted, still trying to work full time, I know my work stats are down constant interpretations and no headspace. I'm exhausted.
Anne I hope yours is nothing like this!!

@Runnerduck34 hopefully there's some light at the end of the tunnel for you with this possible new option - fingers crossed

Runner DS3 is in his element having a 1:1 discussion about one of his interests. He’s gone off today with a Lego book about particle physics to show the DHT.

I am glad the head of the LA’s school has been honest about not being able to meet DD’s needs. Although bemused he feels it’s unprofessional to say that without a visit since SS are routinely consulted on paper only. Having the other school willing to be a witness for you must be a relief after the EOTAS provider pulling out. Is there any possibility of taking some time off work?

Zoo did the taxi turn up this morning?