The Goose & Carrot Pub

[RedRegular]

A thread for all who have DC with SN. The thread is deleted in 90 days and doesn’t show in active. The season is changing and the bar is well stocked.

@RedRegular I love that! Well done DD.

@NoHaudinMaWheest that's really exciting too. Half the battle is being able to imagine being able to do something, isn't it?

What a day. Psychologist with DD1 this morning. Intense and draining. Then I picked up DD3 from school. She was, as predicted, absolutely devastated that her favourite (English) teacher is leaving 2 days after her last Englishpl exam, when she had imagined a nice chilled post-exam summer together.

Paediatrician appointment this lunchtime - we have had an atypical absence every day pretty much and the most are in the evening. He's said it's ok to give the evening dose at 6 or so to help DS cope better with evening activities.

DS ate all of a vaguely Chinese meal (minced pork, peppers, and egg noodles which made it a bit more like Bolognese).
That's one among various minor pluses this weekend so far.

We were told by an epilepsy nurse, that we could give the meds an hour early, if DD1 is having a lot of seizures.

I have also heard that people can be prescribed their meds to have at 8 am, 2 pm and 10 pm, presumably to stop seizures breaking through as the meds wear off?

We are stepping up meds. Had a meeting with college this morning they are getting back to me with a proposal for how the last 8 weeks are going to work and with some info on where he could go next as they don’t offer anything beyond this year. Still no news on EHC review date. Ds was allowed to come in today while I was in the meeting but I declined as he really isn’t very stable and upset can trigger seizures. I’m fairly exhausted by it all.

Talking to a couple of shed companies to see if we can get a shed suitable for a small wild elephant. One firm is I think a no from their responses, the expensive firm I think we could find a solution as they work a lot with special schools and they have also said can come round. The B&Q ones I looked at but I don't think they would survive DS unless he is very careful. This is unlikely.

Sorry for DD3 @Lougle.

Emailed school to ask whether DS speech therapy started and whether the other school has visited. Have asked for outcomes at each SALT session, it's not that we don't trust them but .. we don't trust them.
We don't know if the other school has visited yet but he's been a model pupil apparently and has been ignoring other pupils teasing him (good lad).
RP school head has said they will never take a pupil in a different year no way no how and besides the RP pupils are all in class all the time not in the hub.
Have asked if we can remove inaccurate wording in section B. School that isn't full (but isn't visiting him) said they didn't think they could meet needs, as I don't think section F is out of the ordinary for provision in an ASD school (missing specificity and socialising with NT children, but broadly, well, broad) but section B is out of date, some parts say 2022 and some are just wrong.

Can you get wooden stables? Surely something designed to contain horses, would be stronger than the average garden shed? (My mother rented her field out for horses, and the horse owner put a shelter there for her horses)

College have said they don’t have a plan yet but are working on it (or words to that effect). So I guess no college this week? EHC now set for 3 weeks time. Since ds isn’t actually allowed in college till they sort the 1:1 (that was supposed to be there all along grrrr), and they say they can’t offer any courses next year as he’s already had his allocated time on this course (despite missing most of it), is there any point in continuing at all? It will be difficult for ds being taught separately now he thinks he’s supposed to be in the classroom even though he finds the group classes really too much. I want the best solution for ds. So he doesn’t feel he’s being punished or failed in some way.

@Zeonlywayisup I would think that the better thing would be to arrange for a good ending than limping on, but then I'm of that personality. Once I'm done, I'm done. They have not treated DS well and you've been flogging a dead horse for quite some time, IMO. He needs and deserves better, and so do you.

We've had a really rough weekend with DD3 sobbing for pretty much all of it. But the school, to their credit, have responded well and given DD3 a whole day off timetable and arranged for the departing teacher to spend time with her and the psychologist so they could talk it all through. She's still sad, but more accepting.

DD1 and DD2 are still in limbo.

Poor dd3 and poor all of you. Limbo too is hard to spin on and on. Honk honk

I agree ds is not being treated fairly or kindly. The question is how to get the best of a bad job for him.

The better news is I think the first step up of his medication is settling and he has woken this morning, clearer, calmer and much more himself. I don’t think I’ve seen him so solidly here for months. The person from college said they’d send me information about “what next” in their email, but didn’t. I’m not sure what is on offer for ds (seems more like a shunning than transition to anything!). I suppose my feeling is maybe we’re better just going our own way? It wouldn’t work long long term because at some point ds will need more than I can give (I’m thinking if I get decrepit). We have 9 hours of direct payments for him to have an enabler/pa with him at activities and he has his UC and PIP.

If we did just want to stop college now do we just ask for the EHC to stop?

Z and Dr, I hope the medication adjustments help.

@Zeonlywayisup personally, I wouldn’t let the EHCP cease yet even if college isn’t the right place. Firstly, more support can be secured via the EHCP than social care. Secondly, social care support will be means tested. Provision in F of the EHCP, which can look the same, isn’t.

I would remind the college they are named. They can’t just say DS can’t attend next year. (Or now unless they are formally suspending and have followed, and made reasonable adjustments to, their exclusion policy.’

Alongside this, remind the college and LA if DS was to move setting in September, the EHCP should have been amended by now. If DS it to change setting, by not doing so, they are frustrating your right of appeal. Not to mention hindering a successful transition.

RP school head has said they will never take a pupil in a different year

@drspouse unless it is a wholly independent school, they don’t get to say this.

I think what they are saying is there isn’t anywhere for him to go?

That isn’t a reason to cease to maintain. There is EOTIC.

@scoopofmintchocchipicecream the RP school is not wholly independent, we can at least put them on the appeal when (if) we get to that stage.

As far as I can understand, which is a lot harder than you could ever imagine because there is no communication of even very basic things. Ds is on something called Independence Gateway, which is supposed to be 3.5 days a week but he could only attend for 3 days (???!) this started as 7 hrs 3 days a week and is now 1.5 hrs because they don’t have staff to give him 1:1 in a separate room and he is now too upset by the group room to manage reliably in there. He is only “allowed” 3 years of this stage of education and has had them, because previous years have been logged as being on this course (that might not be totally accurate as it was not explained clearly). I asked to see a curriculum for this year or at least breakdown of what they would be doing in September and was told it didn’t exist!!! So I asked to see what he had done so far this academic year, and what they felt he’d achieved and what they planned to teach him for the rest of the year. They couldn’t provide that in time for yesterday’s meeting.

The bottom line is that ds can’t really learn without very structured focused teaching, consistent practice to consolidate and a calm low “noise” environment. They don’t seem to understand that or work like that. I feel baffled by them, and we can’t really give them too much more of his time if they continue like this.

@Zeonlywayisup the 3 year rule is nonsense some LAs/settings like to perpetuate. It is not part of the law.

All of it is nonsense @scoopofmintchocchipicecream, nothing they say is reliable or frankly honourable. It’s hard to be around. Google keeps thinking I mean exotic, or erotic, when I search for eotic 🙄

I think eotic is actually EXACTLY what ds needs. I guess the question is can I achieve it for him or will it suck up another summer and make us all miserable. We are trialing indoor parkour training this week if he is well enough. Parents and siblings on both sides need more support so I am feeling the pinch a bit this year. Like many of you in the pub the RL picture is bigger and more pressing. I think I will ask for eotic and see what happens. We have nothing to lose really.

No, my LA asked DD1’s FE college if she could do a 4th year, even though they had asked me before if we would agree to that, and we’d said no!

We felt she wasn’t up to full time education. She was grey by the end of a term. Her consultant neuro-psychiatrist subsequently said that in his opinion, too much emphasis was put on education for people with severe epilepsy. We agreed.

@Zeonlywayisup rather than searching EOTIC, search EOTAS, EOTIS, EOTISC. EOTAS is the older wording stemming from the wording in section 19 of the Education Act 1996. EOTIS is the wording stemming from section 61 of the Children and Families Act 2014. Some at SENDIST have a bee in their bonnet about using EOTIS rather than EOTAS. The C on the end as well as or instead of S is just for college for older DC.

It is achievable. However, realistically, you will need to appeal to get a proper package and that won’t be concluded this summer when you don’t even have the right of appeal yet.

Her consultant neuro-psychiatrist subsequently said that in his opinion, too much emphasis was put on education for people with severe epilepsy. We agreed.

Personally, I disagree. Too much emphasis on an education that isn’t appropriate to needs, yes. But not a blanket too much emphasis on education. Education comes in many, many forms. It doesn’t have to be what is viewed as typical educational provision. It doesn’t have to be in an educational setting. It doesn’t have to follow traditional term times or the normal school day. The problem is too many professionals don’t realise the scope of what can be included in section F. For example, many don’t realise that many things which can be provided by adult social services, the NHS or that people do as part of every day life can be funded via F of an EHCP.

The meeting is run by college though and all the reports are 2020. They provide little or no feedback on what progress is being made/not made. None of the outcomes have been met (bar going to the toilet semi independently) and most of the provision isn’t provided.

one if it’s absolute classic lines is XXXX will have developed is awareness of danger and will be able to walk independently on a familiar short route. Will he also learn to levitate and be able to get things from high high shelves?

He can’t tie his own shoe laces. It’s not like it isn’t easy to find things to teach him that would actually help. I spend all my time dealing with the upset caused by on off college and inappropriate expectations.

I will google as you suggest @scoopofmintchocchipicecream bit first I must do swimming lessons for the poor chap so at least something is “normal”

If provision detailed, specified and quantified in F isn’t provided, it can be enforced, including via JR if necessary. However, from your previous posts, a large amount of the provision in DS’s EHCP is not detailed, specified and quantified.

Where a CYP is on the roll of an establishment, it normal for the setting to ‘run’ AR meetings. However, the AR meeting may be chaired by the college, but they do not make the decisions on what, if any, amendments to make or what, if any, placement/type of placement to name. That is the LA. Even then, the LA doesn’t have the ultimate say because you have the option to appeal.

The advice and information circulated before the AR meeting should cover progress. When you receive it, if it doesn’t, you need to chase the college and LA.

If you appeal, seeking independent assessments will help.

“That isn’t a reason to cease to maintain” @scoopofmintchocchipicecream what reasons are there to do this? I guess I’m looking for a heads up as to what they are likely to say to me.

https://www.specialneedsjungle.com/ceasing-maintain-ehc-plan/
this seems to answer the question, and if correct seems fairly clear that they shouldn’t cease to maintain his ehcp. His needs haven’t changed and his outcomes haven’t been met. But the fact remains college can’t educate him. So what are we asking for? What would his days actually look like?