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[ExistingonCoffee]

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

"Hands up who wants to throw down their cheerleader Pom poms and take to their bed like a Victorian lady ✋"

Watch it, we'll have a scene from Charlie and the Chocolate Factory, with us all squeezed in to one bed. I'm in!!

DD3's obsession is sea glass hunting lately. I quite like it, but today we went to London to visit family from 9.30-18.00

It was quite stressful, so DD3 decided that what she and I really needed was to drive 30 minutes to the beach, sea glass hunt for 1½ hours, then drive 30 minutes home.

I was so tired that I fell backwards off the wall we have to climb on my way back to the car. 3 feet ish onto the first ledge, then then another 18 inches from that ledge to the next. Fortunately I felt it coming and was able to twist so I landed on my side rather than my back.

A lovely young couple ran over to offer help but I gamely chirped that they were so kind, but I'd just collect up my spilled glass and try again. I must have looked like a right fool!

poor @Lougle you're doing too much and you are too tired. Explain to Dd and start a barter system where they do x hours of jobs for you in exchange for x hours of driving to sea glass hunting. Hoovering, cleaning windows dog walking bed making dishwasher stacking…. Make the list. Let them choose their currency.

I’ve unpacked half a filthy barn and half a filthy garage. I feel…..filthy. At least another day maybe two as no dh to help in the week. Ds refused to help he says he’s an inside playing boy not an outside working boy.

"Ds refused to help he says he’s an inside playing boy not an outside working boy."

Why is it that it's so annoying when you're the one experiencing it but so cute when it's someone else's story?

Well done for getting that done. Has it inspired you to get the rest done or are you overwhelmed by the job at hand?

You're right that it was too much, but I do benefit from the sea glass hunting. If I could sleep for longer at night it would help but I take so long to wind down, then my body clock wakes early.

DH is home this week, which is nice. Today I am having coffee with a friend who I haven't seen in a long time. I thought perhaps I had offended her because we usually have coffee every 2-3 months and it's been a really long time, but it turns out that I cancelled coffee with her months ago and we agreed that I'd let her know when I was free, then I didn't.

I need to phone Motability about rejecting DD2's car, and also Vauxhall to ask them for the bit of the car that is missing after they repaired it. I also need to phone the wheelchair adaptation company to ask them to fix their mistake that has stopped the wheelchair folding.

DD1 is meeting a new carer today.

Results are in from school consultations.
All have said no except one SLCN secondary who are visiting him at current school.
MS with RP say he can't go into year 9 because there are no Y9 (which we knew) and he can't be in mainstream full time (which we also know). We are asking what the procedure is for appealing MS to be in Y8. We think he can cope with the level of mainstream class participation that some other pupils achieve i.e. PE plus maybe one other lesson (for him likely Art which he loves though he can't draw at all, or Technology as he likes making things, though I'm not sure about the theory lessons).

Two schools say they are full. Both are no longer S41. One says no peer group and they can't cope with his SEMH needs. I don't think they are currently greater than the average child in an ASD school, but that one is also not S41.

I'm not clear if the one that is visiting him is S41 as it's a new secondary provision attached to a primary school that is no longer S41. So I don't know if we have power of appeal for that but it would seem not.

So it's looking like we'd have to appeal for the MS at the same time as appealing B and F, or just appeal B and F and then send out for consultation AGAIN.

@HedgehogsAgree is there room for me?

@Lougle is it wishful thinking to hope you manage a quieter day?

We are asking what the procedure is for appealing MS to be in Y8.

@drspouse you can do ^this as part of a BFI appeal. Being educated outside of chronological year group can be included in F.

Have you spoken to the school that said no because of DS’s SEMH needs? LA consults often aren’t the complete picture, so it is a good idea to contact them yourself to provide them with up to date and accurate information.

You can check on the government's website if the secondary school that is visiting is a separate institution to the primary it is attached to. If it is part of the same institution, and it isn’t s41, you can’t force a place if they refuse. If it isn’t part of the same institution, you may be able to; it will depend on what type of institution it is.

According to a poster on another thread, because DS1 doesn’t have an LD, he should understand not to be violent, can learn it is wrong, and it is behavioural. Who knew it was that simple? They are wrong on all counts.

Thanks @ExistingonCoffee - yes, we've had suggestions of a LD school for DS purely based on behaviour. Good idea to discuss with the school that refused, I think I gave a much better picture of DS to the school that is visiting him over the phone than they could see from the mangled EHCP.
The new secondary isn't yet on the list of S41 and the old primary is on as "no longer". Though maybe the list is out of date.

Checked the list from the DfE and either both schools are "withdrawn" or the secondary school hasn't been added yet.

@drspouse ITA with @ExistingonCoffee that you should contact the school yourself and tell them what DC is really like!

Not the same situation; but several times in respect of DD1 and DD2, we have talked to some public sector organisation or service provider about them and they have said:

“This is why we always speak to the family, because they are the only ones, who tell us the real truth!”

I'm not sure DD1's second carer is a great fit. I think her English is limited, but it was hard to tell because she was so very passive and quiet. She was lovely, and friendly, but DD1 really needs someone who is going to encourage her to do something rather than waiting for DD1 to want to do something. DD1 was really tired today but still, she only managed 45 minutes of her 3 hours today, which included the 'getting to know you and here's our number' time. It was essentially a loop of the village in her wheelchair then home.

I'll give her another go in case it was just shyness, but DD1 really does need proactive care.

@Lougle is the second carer in her 20ties?

Hard to tell, honestly. I suspect possibly more 30s. She's nice, but barely spoke so there was an awkward lull while we were trying to come up with something they could do together. Then DD1 was so tired that it was hard to get her out at all, but she was also too tired to do an activity at home.

I haven't received any information about who is coming when, either, so that's tricky.

@Lougle i think all our goslings need energy and direction, after all that’s what we as parents bring, bridging gaps and making things accessible. If it’s not a good fit move on. Trust your instincts.

DH got back from France late last night, good to have him home. DD went off to a week's rowing camp at 7.30am this morning. We have had cleaner in again and DS was in the garden when she was here which worked well, told him she was coming and said she maybe 10 mins early though she was earlier than that. Lovely to have house all clean, she does just under 2 hours but does all downstairs and hoovers upstairs and I do rest of upstairs and we pre clean downstairs of DSs rubbish and soil.

We are preparing for turf tonight, with the turf laying we have about 24 hours of heavy work to do between us by end of Saturday.

Hope you can find a solution and timetable for the carers @Lougle. Does DD1 like learning languages - maybe she could teach her some of her native language. It might be you need to start with less than 15 hours and try and build.

Sorry about the schools issue @drspouse

Such beautiful weather here and lots of flowers out. DD told me to buy more clothes for DS, I already did but he seems t o wear old ones sometimes and the tops are too short. He has a whole chest of drawers of ones that do fit. DD said he looks like a model but a girl one.

I think I need energy!

I'd send some but I can't find any!

If anyone finds energy, send some this way.

@Lougle don’t be afraid of saying this isn’t going to work and asking for someone else. They should be telling you who is turning up and when.

I'm just on the phone again. 45 minutes until the carer is due and we still don't know who is coming!

So much of ds’s problems are caused by very basic “starting right” things not happening. At his present college someone is supposed to come out and meet him and walk him to his class. It’s hideously stressful because ds has now clocked I’m not allowed upstairs so is racing forwards when they don’t turn up to make a drama about “who won’t let mummy in?” He’s totally freaked out by a higher authority than me. So he starts every day upset. Then he goes into the class which he “disturbs” by arriving and saying hello to all. He can tell they are impatient and want to get on so he of course makes a bigger fuss. Then an hour or so of lesson then home again to ask me on repeat why I can’t come up to the classroom to drop him or why XXX TA wasn’t there to take him and who who who, says he can’t be in college….. grim and I am feeling fairly ferocious.
His caseworker from the LA is calling on Friday so hopefully we can start making things better. Someone today told me EOTAS doesn’t happen after 16???? Is that right? I seem to read and read at the moment but nothing goes in and I think I’m probably going to screw this all up. Bleurgh

Something kind of miraculous happened today though. I upset ds by suggesting he had X for lunch instead of Y but that he could choose. He sometimes can’t do choosing and couldn’t understand that rice would take a long time but pasta could be now. We got very scrambled and eventually he called his Dad(!!!) who came and suggested they both go to McDonald’s. This is the first time ever anyone but me has been able to fix an upset. I offered to come too, but ds said “no I’m ok” and off they went. It’s a new world.

Did anyone listen to Radio 4 this morning and the drugs testing on institutionalised children in Germany. Absolutely awful but important to know that this went on (and imo probably still does).

@Lougle - when DD1 had care workers at home in the school holidays or between placements, I used to ask the agency for a timetable of who was going to do the shifts the next week - because DD1 doesn’t tend to like things sprung on her suddenly.

Even now at the care home, they have to put up in her visual timeline photos of the care workers, who will be doing the morning and afternoon shifts with her each day - otherwise she won’t accept the afternoon care worker! She’ll be wailing on about why did the morning care worker leave her….

@Lougle I hope you got answers before the carer arrived on your doorstep. It isn’t acceptable to leave you and DD1 in the dark like that. None of mine (or me for that matter) would cope with not knowing.

@ZairWazAnOldLady EOTAS/EOTIS/C packages via EHCPs can happen post 16. In fact, section 61 of the Children and Families Act 2014 specifically mentions post 16 institutions. Whoever told you EOTAS/EOTIS/C isn’t possible post 16 is mistaken. They may be confusing it with the LA not having a duty to provide provision under section 19 of the Education Act 1996 to post 16 DC, but that isn’t the same as EOTAS/EOTIS/C via an EHCP.

Thanks @ExistingonCoffee I was sure we’d talked about it before. I’m so annoyed that this year is being wasted as ds is really despite everything really open to learning at the moment. We’ve seen this stage before and the opposite, it’s a sort of quickening and then stagnation. The impact of missing the moment is huge.

@ZairWazAnOldLady McDonald's for the win!! You couldn't possibly muck things up for your DS - you are his sun and his moon. But I'm so glad that his Dad could fix things for him.

Today's (same carer as yesterday) is a definite no.

• It turns out that she's afraid of dogs. We have two, and I made it really clear to the agency that we had dogs and carers needed to be comfortable with that. I'm not shutting them away for 3 hours at a time.
• DH drove them both to a country park 30 minutes away from home. It was 20 minutes before the carer said a single word.
• DD1 said that she was trying to talk to the carer but she was on Instagram so wasn't listening.
• DH said she said a total of possibly 50 words in the entire 3 hour session.
• She didn't try to help with DD1's wheelchair
• She fell asleep on the way back home.

So I phoned the agency and spoke to the same lady I spoke to three times earlier today. I pointed out that DD1 still didn't have a timetable. That she's autistic and she needs information. The response was 'she has Elizabeth tomorrow'. So I had to say 'Ok, what information can you give me about Elizabeth? DD1 needs information about who is coming and what they are like.'

I've told them it has to change or I'm going to be asking for a new agency. It's not ok that we have so many people assigned to DD1 (4 so far) and that we have no idea who is coming.

That sounds totally reasonable @Lougle she doesn’t sound like she understands the job at all.

@ZairWazAnOldLady ive never thought of the impact of a higher authority than me. This makes sense of some things for me and DD. Whoop! for DH being chosen.

@Lougle on the upside today has revelled a lot and saves you hanging in there to see if that particular carer can build a relationship.

DH is away working all week which makes things very busy for me. DD did master how to turn the gas hob on today, that was a hairy experience. Tried lifting an empty pan but dropped it so I’m still thinking an induction hob where movements are more slide than lift is the way forward.