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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.

I can't do this. The carer is unwell and we have yet another new carer. This carer has been fully briefed on DD1 and her needs and our home. Yet she is petrified of dogs. So I've had to shut the dog away. Now the carer is espousing the blessing DD1 is to our family, telling her that DD3's school experience should have been reported (DD1 has started telling her all about the history of our family). I just want to run away.

Sorry that is difficult @Lougle Can you recruit someone yourself and just have one person? I think 16 hours is the working limit for benefits so would have thought 15 hours could get someone especially if school hours though maybe 4 days rather than 5 slightly longer and Wednesdays off.

Glad your DH is getting better though sorry its slow @OneInEight and congrats on the new driver in the house.

We have finally finished the lawn, I think 7 days in a row of hours of heavy gardening / carrying soil and we are both shattered but very happy and hope it lasts. DS is being careful. Silkies not so much but they are light.

We also need to consider options for shed / summerhouse / garden room - garden rooms look the best but not sure if we have space and they are the priciest. Not sure would get money back on sale. Everything needs permission here as listed so more for next year than this.

I have now had a bath and a cup of tea and have collapsed in bed so this is the view of part of new lawn from my window. Tonight DH has volunteered to sort the green bins out as I think we maybe at double the weight limit for a bin though nobody at the council knows what the weight limit for the council lorry is. They have said some councils its 30kgs. Cleaned kitchen floor. DS had bath, he's having one a day. DD back home from rowing camp, week with us and back to uni.

lougle I don't blame you. A good carer is worth their weight in gold but a bad one or one that isn't a good fit is worse than useless.
Recruiting your own is a lot of extra work but may be better in the long run if you can find someone suitable.

We use an agency but I get the impression they are not a typical agency. We have one PA allocated for weekdays and he only comes for 1 1/2 to 2 hrs at a time (we want more but only if it can coincide with DS activities) and the owner of the agency herself comes for weekend babysitting once a month - she's been coming since the DCs were tiny. She won't send just anyone to fill in - but she struggles to get staff so only allocates someone to a family if they are a good fit.

We use DS Direct Payments for this and we don't get nearly enough hours. However, we do also use them for some activities e.g. swimming lessons because the payments are supposed to be used to increase his independence and this is very much what the lessons do.

And I actually came on to say I rang the school that said they couldn't meet need. They said in their feedback that they are not an SEMH school, DS needs are now more around anxiety and it is possible his EHCP has not removed enough of the older wording around behaviour (I need to check) but she seemed to be implying that they just did SLCN and no SEMH which seems very odd for a school that has children with and without ASD diagnosis but primarily SLCN, because I am not sure I know a child with ASD diagnosis that doesn't have some element of SEMH, especially anxiety. She did also say it would come down to the needs of the cohort and she couldn't talk about the current class, which is fair enough, but I really don't think there's much in his current section F that is way out there for an SLCN school. A lot of it is sensory help, breaks from the room, organisational help, and emotion understanding, as well as needing SALT.
She told me we shouldn't get anything removed that he actually needs from F, which is pretty obvious but I can't really see what is in there that they wouldn't be able to provide anyway. But she (helpfully - not!) said that we should ask the LEA to "just edit the EHCP" if we thought it wasn't reflective. Erm we have tried that...
She did also suggest getting the need for a class with younger DCs put into his EHCP though I don't know if this was based on anything in his profile or if it was just a response to my worry that he is now at the end of year 9 and needs to be starting his GCSEs.

Better pic

That’s so pretty @Squirrelsandhedgehogs well done. How lovely that it is all coming together.

@Lougle people can be so clumsy and obtuse. Your job is to savagely weed out the damaging and cultivate the potentially life enhancing (sometimes you mistake one for the other but just keep going). In the meantime will you please find some peace for yourself or you are going to break. You can be a bit crap at some bits of your life till things are working better.

In truly predictably awful timing the ping of the next half of ds’s drugs being ready came through before breakfast…..so it’s back again for another hour waiting in line. Shall I start a singalong? (I sound like a crow) or perhaps use it like Speakers Corner to regale the queue with my thoughts on various important topics. I’m tired. One of my children doesn’t cope with ds at all and it’s making me miserable.

if only college would work again and I could use the summer term to teach Ds to go to his activities with an enabler instead of just managing his stress levels. Maybe I should just tell them no more college and just do the activities we do and let him chill in between??? Is all this really worth it?

@Squirrelsandhedgehogs that is a very beautiful picture.

@drspouse it's really difficult if you can see your child there but they can't. Sometimes the needs of one child do conflict with the needs of others. I think that's really hard for the parent whose child is last in the queue, because they aren't being turned down because they are inherently a bad fit, it's just that they know it would be difficult in combination with the needs of another child.

@ZairWazAnOldLady I dare you..in fact I double dare you. Start muttering about the cost of petrol, or the price of weetabix...you'll soon have thriving conversation. I spend many an hour at the pharmacy, ping ponging between prescriber, pharmacy and GP surgery. Now the psychiatrist has started writing me FP10s, which is kind, but I have to drive 10 miles to get them.

The carer isn't so bad. I think it's just the fact that I'm stuck in this space with them. I could go to my bedroom but that feels odd. I think 4 new carers in 8 days has tipped me over the edge. Hopefully I can escape to the beach for a couple of hours this afternoon.

@OneInEight any improvement is good. It’s a big recovery and I was thinking if you and wishing you all well. Great news on driving test!

@Squirrelsandhedgehogs wow! That is a lot of work, so very pretty. Your biceps must be in top top form now.

@Lougle its weird when someone is in the house. I never want to pass through the same room in case it breaks the spell, of what I don’t know.

@ZairWazAnOldLady what a bore! Go straight to the front of the queue if that doesn’t work the fallout will pass the time (I’ve been reading Viz top tips recently).

In among all the madness I have a possible new activator ds. It’s indoor (coached) parkour. I was watching a place that makes me happy online (pinpoint fitness in Dubai) and went a bit rogue and just lobbed off a load of emails to possible places that might give us that sort of experience. One mailed back today. I have a feeling it’s going to clash with college hours that we’re not allowed in for, so I’m not sure if we go ahead but maybe we just do a few sessions and then decide???? I can’t keep not doing stuff because of college. Honestly there have been so many things he’s missed for it it’s ridiculous.

Stop encouraging my fantasy bad behaviour. What you don’t realise is I was an extremely stroppy teen and we do not want to revisit that level of nonsense 🤣🤣🤣🤣. You are all such a comfort.

@OneInEight well done to DS1. I hope DH continues to recover even if it is slow.

@Squirrelsandhedgehogs the garden looks lovely.

@Lougle it is no wonder a constant stream of new carers tipped you over the edge. It isn’t good enough from the agency. If you want to continue using that agency, would a meeting with them, social care and the psychologist help? Don’t be worried about being direct with the carers about ground rules.

@drspouse I’m sorry it is looking hopefully that the will offer a place. It’s not that unusual for SLCN schools to not admit when there are significant SEMH needs.

@ZairWazAnOldLady I need to hear all about your shenanigans, so I heartily encourage you to revisit your teens.

@ExistingonCoffee I'm a bit baffled. Yesterday morning I was emailed to say that carer 1 would be with us all week. Carer 1 came and was great. Today I got an email saying carer 1 is unwell and that carer D, who we hadn't met, would come, and that she was fully briefed about DD1. She came, is scared of dogs, but I sorted that. DD1 started telling her the whole history of her and other DDs' educational disasters. Carer starts saying that the school should have been reported. I intervene. Later, the carer told me that she works in residential care for LD, and after DD1 went upstairs she said 'this is nothing', referring to DD1's needs. I told her that she was being unkind, that it wasn't ok to say that and that she doesn't know DD1 because she's only just met her.

squirrelsandhedgehogs the garden looks lovely. You have put in a lot of work.

Dd is struggling with hip pain. She does usually get some hip pain but this is new. I have booked myself into a private physio for my shoulder. It I think she is good (and if the premises are accessible) I will probably book Dd in too.

@drspouse DD1 was at a specialist SLCN school that did not take CYP with SEMH. The children were intelligent and basically needed to be able to take care of themselves. If they did have behavioural problems, it was expected that this was due to being in the wrong provision (mainstream) and the problems would be remediated by being in an environment, where they could cope.

We knew all the children, because we met them every Friday afternoon and Sunday night. I didn’t see behavioural problems, except one girl bullied DD1 later and she had been moved from another specialist school, because she was being bullied!

@Lougle you were incredibly restrained. I am seething on your behalf. I would have told her to leave.

@NoHaudinMaWheest I hope the new hip pain eases soon.

Later, the carer told me that she works in residential care for LD, and after DD1 went upstairs she said 'this is nothing',
I BEG YOUR PARDON??! What exactly did she mean?

The annoying thing is that when I went round the SLCN school there was one child in the corridor being talked down by about three staff and in their lovely outdoor space there were two or three who'd gone out for a break.
Which all seem like SEMH needs to me!

I guess it’s like a lot of specialist provisions - they can’t get enough bums on seats in their specialism to break even. They have to go down the autism/more challenging behaviour route, because those are the CYP LAs struggle to place?

DD1 has been in 2 epilepsy specialist provisions, that have done that. They’ve cut down on the medical provision, and promoted themselves as specialists in autism. I am not sure, they have the expertise, they think they have?

When we visited DD1’s old school at a reunion for former pupils, the care staff complained to us, the school was taking more complex children.

She meant that she works with largely non-verbal men in their 30s-40s with LD or drug-induced disabilities, who can be aggressive. One of her clients had 5:1 care when out.

But I explained to her that it's because DD1 is verbal that she's so vulnerable.

I don't know. It's not good.

Sounds awful @Lougle I can’t help thinking your dd must get mental indigestion trying to think of her life as described by so many different people with such very different ideas about everything.

I think I get mental indigestion too! I had the Psychologist on Friday, saying "this is why you're getting so much support", then the carer yesterday saying "this is nothing".

DD1 can't do anything reliably herself. She came in to my room to confess that she'd taken too much cereal for breakfast yesterday. She knows she's meant to weigh 40g (she can't judge quantity yet). I asked how much the scales said and she said '9-8'. So my attempt to allow some independence resulted in 2½ breakfasts 🤣

I need some activity ideas that aren't babyish but don't involve lots of fine motor control or concentration. DD1 likes painting by numbers, but she likes the more grown up pictures, then the shapes are too fiddly. She likes the idea of diamond art but struggles with the sticky surface (her jumper gets caught on it, etc) and the diamonds are too small. Rock painting requires too much imagination and she gets frustrated that the finished item isn't as she thought it would be. Ditto polymer clay. Scratch art requires too much finesse. She won't do board games or jigsaw puzzles. She won't read books/be read to/listen to audio books. She won't watch films.

There is only so much walking around the village that can be done.

My DS likes YouTube drawing tutorials. He also wouldn't cope with a fiddly craft (he has dyspraxia). The pictures do end up looking like the pattern! But he can concentrate well when it's something he's interested in.

DD2 had that last year, when she was a voluntary in patient at a mental health hospital. She was on 1:1 24/7 because she was so suicidal. One of her 1:1s commented

“This is so easy!”

They had come from the PICU ward for violent patients. DD2 is generally a nice quiet well behaved young woman! (Not always at home!)

@Lougle - it’s good that DD doesn’t need 5:1 in the community. Staffing it would be a nightmare, although I can’t imagine that you could have DD living at home, with that level of challenging behaviour?

We've just had an EHCP meeting with the Psychologist, EP, SALT, Special Needs Co-ordinator and Special Needs Officer. They're going to look into and consult with specialist provisions that can offer weekly boarding and a waking day curriculum. The SNO was going to suggest some specialist colleges about 30 miles away but the Psychologist said that unless they were ASD specific and offered boarding, DD1 won't cope with the transition and transport.

I’m possibly the worst person to talk to about any kind of residential school but you know her @Lougle do what gives her the best chance at happiness.
Activities however are my kind of problem to solve. Does she have the patience for gardening? Ds isn’t really into it at all but I know lots of other kids at his college do a lot. Could she knit, crochet, tapestry, make rugs, weave, spin, tat, hand sew, machine sew?
Could she make models with wood, or cardboard, or book nook type kits, or dolls houses or miniature gardens or scenes like small world kitchens etc
Would she enjoy ceramics (ds likes the wheel), or mosaic or making a musical instrument?
What about a theatre group (we tried but ds couldn’t cope), or a sport? What do your local leisure centre offer, ours is lovely.
Cooking can be exciting especially if you go on a “course”, pizza express used to do days as did yosushi, but most cooking schools run short sessions on cooking bread or cakes or high tea etc
What about spa type activities? Massage/yoga/sauna/mani/pedi/hair/facial…could be very funny.
What about a holiday with lots of prep beforehand? Eg a flight to Spain, a couple of nights, and a flight back, prep learning about language, airports, plane, hotels, food. I know sounds exhausting but you can plan for ages and do lots of important looking things up. Development booster extraordinaire for ds,
I know you’re reading this feeling like all of it is too much and she couldn’t handle that or you couldn’t but my personal advice would be just try some of it and be crap at it or hate it or decide at the last moment you can’t. The wrong things fall away and the new bits make life bigger.

And do the same for yourself, it’s your life too.

That's really kind of you @ZairWazAnOldLady . Most of those would be a struggle due to fine motor skills or lack of attention skills. But it's food for thought.

She has just spent some time drawing fruit to show her carer though.