Help me!advice over son and school desperately needed

[Stilllivinginazoo]

My D's is 13.last September he had a massive panic attack 5days into term.his then went from mildly anxious(has had settling issues at night overthinking etc for a number of years)to so distressed he was having constant panic attacks/huge separation anxiety from me
School called us that first time as he does have a heart rate like a blur it's so fast and face goes scarlet.gp confirmed anxiety
He returned a week later(school wanted a meeting before returning and I waited for all staff to be available).they decided SENCO unit,coming in half-hour after-school started and leave half hour early
He quickly deteriorated needing eardefenders outside and in SENCO. times dropped to pickup at lunch but he was still so overwhelmed was doing no work
After October half-term another meeting.we saw gp again as requested (same diagnosis,but did do bloods to ensure no deficiencies,all systems in order.no concerns there)they said it's behavioural and pushed increase hours.he was so distressed I had to collect him 2hours in.hours cut 9-11 and had given 1-1 but they said after couple weeks having attachment issues and insisted mixing up supporting staff.things didn't improve and by xmas he was exhausted and like a hollow defeated shell,aware had to go but couldn't cope.a member of staff suggested see if could get him signed off school
Camhs referral came then.assigned occupational therapist whom he was too fearful to see without me present
He was so distressed she signed him off saying he was too overwhelmingly distressed to learn anything
After a couple of months she flagged ASD and he's now in process being tested(had initial assessment,awaiting observational test(9month wait here)
I spoke numerous times to school about homework. their policy forbids as "doesn't encourage engagement with the classroom which is the best for learning" but after he was still off at easter OT pressed them too and we got some work which I did with him over a couple hours aday(in twenty minute bursts)they then said we won't mark it as it's not done in school!
So fast forward to this September,still not fit to be there.no work from school(saying they are collaborating topics being learnt this term for us to look at ourselves)we have TAF meetings now.outreach not an option as in my county it's small groups in hospital setting independant from parents.ds does 35 of 45 minute sessions with OT independantly.has no friends,doesn't go outside without me.he attends awellbeing group at our church(arts and crafts mainly retired ladies) but prefers to play with a dog there.
The TAF have asked me to request EHCP from local authority(no idea what I'm doing with that either)
He's a curious child who loves to learn and as in year 9 now I'm afraid he's getting too far behind his peers
I have no idea where to start teaching him myself in interim and before anyone jumps on me for let it go on so long time has blurred from 24/7 care he has required (wakes in night/doesn't settle)and I also have2 other children..
Can anyone advise what I can do to push for a education for him?
And any advice on EHCP also welcome
Sorry such long post didn't want to drip feed

[OneInEight]

ds2 is too anxious to attend school. The local authority now provide him with home tutors for ten hours a week. It was not easy to get them to do this as they would prefer he be in college (kind of difficult when he seldom leaves the house) and he has an EHCP.

It is relatively easy to start the application for an EHCP - google for the details of the SEN team at your local authority and write a letter asking for assessment on the grounds that he has been out of school for so long. They should then send back asking for fuller details.

I might add the school are behaving shockingly bad. If he remains on roll they should be providing work at home, marking and providing feedback on it. They should also have put in an EHCP application themselves when his attendance got so low.

You could also look at online schools which is a solution some parents with very anxious children have used successfully.

[livpotter]

I'm pretty sure no one on these boards will jump on you! It sounds like you are both having an unbelievably tough time of it at the moment. Is he able to communicate what it is that he finds so stressful about the school environment.

If you look on the IPSEA website there is advice on how to apply for an EHCP. There is also advice there for if they turn down your application, although from what you've written I seriously doubt they would turn you down.
If you search online for your local authority Local Offer should have application forms and guidance on the pathway.

Some things I would be thinking about in your situation are. Realistically what kind of support do you think he will need to get him back into a mainstream classroom? Would home educating be an option for you? Maybe there are other schools locally that provide better pastoral care/smaller classes?

On another note have have you applied for DLA? With the level of care you are giving him I imagine you would probably qualify for the higher rate care component.

[1stepforward2back]

I'm glad you have posted here, Zoo.

I won't repeat what I posted elsewhere or PM'ed you, except to reiterate the LA have a statutory duty to provide education to medically unwell pupils, including those too unwell to go to a centre, regardless of whether their local policy says no.

Have you been in contact with Unique? They support families with chromosome disorders.

[Stilllivinginazoo]

oneineight I'm told that as he hasn't attended in so long they are not in a position to ask for ECHP as they don't really know him...they come once a term to "risk assess" him as he's not in school.they are here less than 5minutes.

Livpotter thank you.mn can be a complete vipers nest so I was a bit fearful of judgement
Hes never going to be able to go back to that school,they have said so as it's HUGE and they are an inclusive school so SENCO only offer very limited time there.i am aware of two school that offer more specialist needs, locally.but I've no idea what they offer etc.i assume once we get EHCP this will become a topic of conversation?
I was told the other day to try for DLA.i am awaiting forms to arrive in post
As for HE I'd have no idea where to start,I am rubbish at maths.we are looking at tactonic plates as he is interested in natural things like earthquakes,volcanoes etc and he is quite knowledgeable but we are going in depthwe also read together
Thank you both for taking the time to reply.i feel totally lost as no one says what other choices there are or what I can do for the best

[Stilllivinginazoo]

one-step hi!
He has a reversal chromosome on long arm no 9.genetic counsellor said he has no breaks in important chains so was a case of brain like filing cabinet with all files jumbled up.we suspect he doesn't have fill set teeth as only a few adult ones have appeared and bones were the other potential issue.in a year or so expected to have dental x-rays if things don't change.he will need genetic counselling if has children as it could cause a severely disabled child if he passes it on

[1stepforward2back]

The SN boards are much more supportive than the main boards, no judgment here.

Mention the 9q inversion on the DLA forms as well as DS' anxiety and suspected ASD.

Don't deregister DS from school, it is easier to get support when on someone's roll.

Once you have asked for a EHCNA it wouldn't hurt to look at what schools are in traveling distance so you have idea of which one(s) might work. You don't get a huge amount of time when you get a draft EHCP so having an idea already helps. Similarly, it helps to have an idea of who you would like consulting as part of the needs assessment.