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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.

Great news @RainingDucks

New sofa bed was delivered at 7am and they assembled it and took packaging away. I was on keeping the cat out of the way duty which wasn't too bad as he was sleepy. Its just like our old one but bigger and all seems fine. DS also took a bath in the middle of the night so I have cleaned the bathroom. We have the cleaner coming for the first time today for 3 hours. Am tired now as only a few hours sleep but good to see sofa there. The entrance hall curtains I got seem to match very well and have helped DS be in the living room a lot more. He worshipped that sofa before. Need to be careful with the cat, we have the back against a wall, one side against a wall but need to find something for other side. We were going to put the tall dresser there but it doesn't work with our ceiling beams. May put a table. We have a cheap one we can assemble later today and then will see how DS uses it. Its so like the old one (but its longer at 2.1m) its slightly strange like going back in time. Hope it will help DS. Its moved since this pic was taken to against the wall on the one side and dresser moved.

That looks lovely @Squirrelsandhedgehogs

A furniture protection tape like this https://amzn.eu/d/09h4Et8f might help?

Thanks @Lougle We are going to move a chest of drawers to the other side of the sofa so we will have both sides and back cat proofed. So its only the front and I will see how DS and cat are using it but we may be able to strategically place some tables - DS loved nest of tables and also otherwise he will put drinks on the sofa and knock them over. 🤔

New cleaner didn't turn up but did at least respond to e-mails when I e-mailed her at 45 mins late. She said she's unwell and thought she had sent a message yesterday. Have rearranged for next Tuesday and made it 2 hours and in the morning so its not over lunch. And found out she brings her own things. I think 2 hours is better as 3 would be a bit much weekly. Pancake day. We can manage without a cleaner if she doesn't come but its just been getting a bit much with the mud and doing the garden with mud. It should get better end of next month if not before. Cat is happy with his new sofa bed.

Not turning up day 1 isn’t a great start. You were kind to accept that. New sofa looks very smart. Isn’t it lovely when things are all perfect? I hope ds loves it. I cover ours with throws in an attempt to save them from dratted cat claws but also because big old houses are a little crafty so it’s nice to snug down.

Ds is furious with me today. He didn’t want me to crop a photo on my phone and is outraged that I refused to accomodate the controlling little monster….well huge monster. I can’t work out if I’m being an arsehole about it or preserving boundaries. I miss dd3 who has disappeared into university so completely it’s like she’s gone. I expect it’s for the best and I wouldn’t want her sad at all but she has left a hole in our lives.

@Squirrelsandhedgehogs Dcat has no interest in leather has yours? Well I say had no interest but now there is a small rip in our leather sofa Dcat has become very interested in opening that up! Beautiful sofa I hope DS gets joy from it.

That sounds like university is going well for DD3 @ZairWazAnOldLady but it is a bit empty when they have gone. We don't that hear much from DD in term time but know she is busy enjoying life so prefer she can do that. Her terms are short so we still get a fair amount of her. Yes we will see if the cleaner turns up next week, it was fine for today and its borderline whether we need one - its been useful anyway as DH decided he needed to tidy his stuff for the cleaner.

I am not sure about the cat and leather @HedgehogsAgree but I have a fabric reclining chair in my bedroom and he stretches up and puts his claws in the top of it. Its covered in fleece sheet so its fine. I think as he's a big cat (8kgs and a metre plus 40cm of tail when he's standing) its the higher areas that are at risk. But we have the back against a wall, one side against a wall, tonight other side will have chest of drawers against it so that just leaves the front of the two armrests. I think I will get 2 little side tables / nest of tables to go in front of both as this will stop the cat and will also give DS something to put drinks / food on.

Its lovely having new things but I always have to think how can DS / the cat / the chickens trash this and how can I stop this happening. 😂I ordered DS replacement gardening gloves and RHS has sent them by a next day courier so I keep getting updates about 1 pair of gloves which should hopefully go through letterbox unless they have gone packaging crazy. Just saw DS walking round the garden and he was actually using the paths apart from a small bit. The chickens and our pigeon also use them.

I hate those constant updates:
We have sent your parcel
Your parcel is at the sorting facility
Your parcel has left the sorting facility
Your parcel is out for delivery
Your parcel will be delivered in the next hour
Your parcel has been delivered (has it? where?)

Got an email back about our draft EHCP which is now over the deadline. LEA SENDO can't agree to changes "because the time for each isn't specified in the reports and it adds up to too much time in the week". Well, 90% of that is provision that is either in the classroom (helping him with organisation, making sure he is paying attention, giving him a movement break) and that's the job of the 1:1 or alongside the classroom (literacy/handwriting/typing where either he'll do that instead of the regular classroom activity or out of the class on his own or with a small group). Also, because EP says he needs to be in specialist then obviously EP is right about everything. Gah.

I have written back to basically say "it's your job to specify so just do it". Also a cryptic phrase that "some things requested aren't provision" which might mean "they don't take place in school" but that's not really relevant, his current school delivers a lot of curriculum out of school, whether we think a random outing twice a week to places we take him to anyway is educational is besides the point. We'd rather he was actually being educated in school and then we can do fun things with him, rather than us educating him and them messing around.

Sorry but not surprised LEA are being difficult @drspouse Yes I find those delivery updates can be annoying especially Evris and when the company sends them as well, I have some recently which come from abroad via Evri which adds another layer of we are expecting your parcel and Evri also has a habit of saying we have delivered your parcel to click and collect then a few hours later sending another one saying actually we didn't really do that. Then its guess did Evri deliver it or not, sometimes they have, sometimes they have not.

Still waiting for DS gardening gloves courier, why someone could not use common sense and just send them out through the post to go via letterbox I don't know. The thing that is most annoying is when they say we have left it in a safe place and they have left a great big box in the middle of the road. 🤔

Just had pancakes which was nice. DS raided the nutella before we even started cooking. Just moving chest of drawers now. The cat overheard me saying about him scratching and looked at me like I can do that if you want. Been looking at coffee tables etc but can't find one I like at the moment - I like when they used to handmake them with oak years ago.

Just had a message through gloves delivered "to a suitable place" Luckily we have tracked them down to the letterbox. I've just ordered a coffee table and side tables, they were good value and probably not worth getting top quality ones with DS but we do need something to stop DS putting drinks on sofa and cat scratching and this should work.

I love my GP. I phoned the surgery yesterday to say that I'd submitted a rapid health about DD1's x-rays and the letter had come through from the physio. I also asked that they give adequate pain relief.

At 5:50pm I got a text saying that the x-rays had been requested. I immediately replied saying 'can we have some decent pain relief because we don't have anything and she's in pain.' He phoned me immediately, chatted through the options and came up with a plan.

If only all GPs could be like it.

Great news @RainingDucks!

Our EHCP appeal has been submitted (10 minutes after we got the mediation certificate!) Now just waiting to hear back.

Good luck with appeal @RavenLaw

Glad GP helpful @Lougle

DS has been in the living room a fair amount and also in the garden. We are not totally sure what he is doing - DH went downstairs and found DS had got out loads of things from under the stairs left them all over and taken DHs blue rucksack into the living room and put it on the sofa. There's nothing of DSs under the stairs 🤔Next time DH went there his blue rucksack was back in its place. He's also been going out to the garden via the living room. Eating well at the moment. Took a bath night before last. Cat has been unsettled by the wind so I've had 8kgs of cat on top of me - its cute but not sure how the cat thinks I can save him when he's on top. Hopefully do more in the garden this weekend.

@drspouse how frustrating and @RavenLaw good luck with appeal. @Squirrelsandhedgehogs lovely sofa, glad you got to have pancakes too! @Lougle glad the GP was helpful.
We have had a quiet day today after a day out yesterday. Swimming tomorrow and then chill out weekend to prep for school next week. I am having a bit of a freak out reading the news reports about the sen reforms as DS is in phase transfer. We had his annual review last month and still no updated paperwork from LEA (not unusual in itself as they haven't updated for a while and we have schools plan for short term targets which has been working well). DS is at a sen school where we want him to stay but now I am freaking out a bit that LEA will try to move him back to mainstream (which would be disastrous) because he's academically bright and doesnt seem as high need as he was (due to all the support and right approaches being used this year to support his pda and asd. Argh.

They seem to be floating a new idea every ten minutes @ElizabethBennetsFineEyes. I’m not at all sure any reforms will ever happen beyond perhaps a bit of deckchair shuffling.

@Lougle I hope the pain relief helps.

@RavenLaw good luck with the appeal.

@Squirrelsandhedgehogs lovely sofa bed.

@ElizabethBennetsFineEyes if DS is a phase transfer year now, you should have had the phase transfer review in the autumn term and the LA should have finalised now. If you don’t have a finalised plan yet, you should chase ASAP. Nothing will happen anytime soon whatever changes go ahead, so I wouldn’t worry in relation to the secondary phase transfer.

Anyone have déjà vu with Targeted and Targeted Plus? All the hallmarks of the old SA and SA+. Around in circles we go.

A difficult day at a hospital appointment here.

@ElizabethBennetsFineEyes it is such a worry. Anything that is decided will take time to be approved and implemented and I think legacy support is always the last thing to be sorted behind stopping new support applicants. We have been out of the system for 9 years now but I will be signing petitions and lobbying my MP.

I was listening to the radio today and it’s shocking that people think it’s ok for children to miss out on years of education rather than provide proper provision. It’s not so long ago that everyone was up in arms about Covid restrictions and the terrible effects of not attending school. Seems that concern doesn’t apply to SEN.

@ExistingonCoffee ☕️ sorry it’s been a hard day.

I’m attempting to take DD inside the solicitor’s office tomorrow to complete ID checks. They have kindly said they can do it outside if needed but I’m hoping the lure of lawyers gets her through the door.

Thanks, as he's in a sen provision that goes from primary to secondary they only did the AR in Jan, which is standard there, so am crossing fingers. He would not cope in MS, which current school know, but on paper he is bright and able so it is a worry that the LEA might try it on again. His pda and executive function issues coupled with issues with hierarchy would not go well at our very strict local MS senior...

I echo your concerns @ElizabethBennetsFineEyes i was just reading the latest update on the guardian education page. I’m selfishly relieved they were banding around 2030 so for our DD she’ll be through the CSA phase but feel so concerned about the changes as DD would have just been stuck in “inclusion” being babysat learning zilch as that’s what they basically did anyway until we pulled her out. Coupled with extra restrictions to home educate under the C&W bill it’s a worrying direction of travel.

Sorry you have had a tough day @ExistingonCoffee i hope it’s not an overnight hospital stay.

Hope DD can make it into the legal office @HedgehogsAgree and is back into the studying flow again.

DD continuing to respond very well to the new meds and we actually went out for lunch today in a pub with no issues. I took uno cards we stayed an hour and she was fine! It’s turning out to be life changing for all of us at the moment.

@ExistingonCoffee sorry you've had a hard day.

It's laughable that the Government are worrying about what words to use to describe the ravaging of the SEN system.

We've received a grant for DD1's next car. It was a bit tedious to negotiate, as the chap was quite fixated on us getting a 7 seater, but only wanted to give a low grant which would have pinned us into a bench seat. So I convinced him to give us a grant for the Vauxhall Combo Life, which we didn't want, but it meant we can upgrade it to the Peugeot Rifter long wheelbase. I couldn't be bothered to keep explaining to him that the Vauxhall Combo Life 5 seater is a short wheelbase....he didn't seem to understand the difference.

We had a CPA for DD1 yesterday. I think the psychiatrist is struggling. After introductions, the psychiatrist turned to the SW and said 'are you going to introduce yourself'? The psychologist said 'she just did...' Then she was going on and on about an LPA for health and welfare, but I kept pointing out that if we think DD1 doesn't have capacity, she can't make an LPA. Then she turned to deputyship but I really don't think it's helpful or necessary in her case. Then we had to explain about DOLS, etc. After quite a long conversation between the SW and I about how hard it is to support me as a carer because DD1 wouldn't cope with any of the support offerings, the psychiatrist said that she'd like us to discuss carer support because it's a lot of pressure for me. So the psychologist had to say 'we've just discussed that...'

We saw the physio with a senior physio today. The senior physio said that it's possible that DD1's spine isn't structurally twisted, but that her muscles on her right side are so tight that it's misaligned her spine. We're still waiting for the x-ray.

@RainingDucks a pub! I am loving hearing about DD’s achievements.

@HedgehogsAgree I hope DD manages tomorrow.

@Lougle good news on the grant. Even if it was harder work than it needed to be. Your experience with the psychiatrist is baffling. She really isn’t suited to the role.

Thanks, as he's in a sen provision that goes from primary to secondary they only did the AR in Jan, which is standard there,

@ElizabethBennetsFineEyes it doesn’t matter that it is an all-through school. As a secondary phase transfer, the AR meeting should have been held in the autumn term so that the LA could finalise by the 15th Feb. Jan is too late for a secondary phase transfer review. The LA is in breach of the deadline. Case law confirms the deadline applies to all-through schools. R(M) v East Sussex [2009] EWHC 1651 if you are interested. It is about SSEN rather than EHCPs, but the case is still relevant for EHCPs. The LGO also more recently confirmed the deadline still applies.

Thanks all. Not an overnight stay, thankfully. Just a hospital appointment that was difficult and resulted in a meltdown because of two HCPs who weren’t understanding of DS1’s additional needs.

lougle good that you have the car sorted but so frustrating when you have to do people's jobs for them. The psychiatrist sounds as if she is not coping herself. I hope the better physio input proves helpful.

Existing on Coffee a frustrating day for you too. I hope DS1 is recovering ok.

RainingDucks great to hear of more progress.

Hedgehogsagree I hope all goes well tomorrow.

DD has been allocated a TESOL student and starts the week after next. They are meeting in the local library as the student's flat isn't accessible. TBH I am quite relieved that they are meeting in a public place but perhaps I am being over protective.

So much happening for everyone. It’s half term here and life is rather full. All children in minor “extra needed” and the combination a little mind blowing. I don’t feel like I’ve given ds a good break. Too much just messing in his room, but perhaps that was needed. What does good parenting look like for us? Wouldn’t it be nice to ever feel you’ve done well?
@HedgehogsAgree i often think about the Covid education experience for children being so like our experiences of life with a disabled child. The sudden swoop from trotting along a known well trodden path to mayhem. The impact on that generation is so glaringly similar to our children’s burden of lost academic rigour and social barriers. Our own parenting experience has the same weary acceptance that it is too big a job.

@Lougle I have had similar meeting surrounding capacity/dols/lpa with half baked nonsense being spouted by different interested parties. Utterly unhelpful for me and a bit of an emotional overload on my part so I think you’ve done well to remain focused. It sounds like the psychiatrist isn’t managing to concentrate through the meetings. If it happens again it would be worth highlighting because the burn out is very real in that role and you absolutely don’t want to be under their care if that’s the situation. Psychiatrists and psychologists are rarely in harmony so don’t get dragged into “sides” if that’s a factor.

What set up helps you support dd1 best? What keeps her safe and you all happy? Do that.
I’m with you all on the endless emails about deliveries. It’s such a waste and helps no one.
@ExistingonCoffee poor ds1. Honestly if his HCP can’t get it right for him to access their services, who can???? I hate the thought of him becoming so upset when it’s avoidable. I hope the meeting was worth it and things get easier for your young man. He and you all must be so tired of it. ☕️🍰

I intended to do so much this half term and have achieved so very little. It’s ridiculous. When does anyone have time for normal cleaning/cooking/admin? I have decided this year is the year I must bin half of the nonsense built up in this house. It’s just. To. Full.