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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.

@RainingDucks if the EHCP was issued in 2024, you should have had an AR before now. Tribunal doesn’t negate the need for ARs.

Does F include time allocated for updated advice an information during the AR process, prep time for the AR meeting and attendance at the meeting?

You don’t need to force DD back into mainstream school or college. EOTAS/EOTIS/C can cover post 16.

That sounds so hard @ZairWazAnOldLady poor DS, is there anything’s at home that he can work on or has an interest in to keep him doing something? When DD was very low we made slime in lots of variations then came up with random slime names and then she draw a logo etc. sorry if not suitable for his abilities but we had fun talking about a fantasy slime business.

Nope @ExistingonCoffee not had an AR since tribunal the only AR was Sept 24 prior to tribunal, then every term had a check in meeting on AP provision and general progress. So I knew it was overdue just wasn’t prodding them as every parent I’ve heard locally that’s had one it’s been very negative experience of trying to strip out provision. Yes in an ideal world she’d keep eotas until 17-18 and potentially support to access MS college as ability is there & socially maturing but has always been 1-2yrs “younger” emotionally than her peers. She saw her sister go to college so is aware of what it’s all about & I think could do a Btec L3 style course if it’s coursework focused not exam with my help scaffolding the executive functioning struggles.

I think I can’t do anything till ds is back to himself. Sadness/stress and fever trigger seizures and we are not in a great place. I don’t even know what we are fighting towards anymore.

It's difficult when the thing you need to fight is the thing that's causing him stress - until they meet his needs you'll both be stressed.

DD3 has had a tricky weekend being triggered by seeing people from her old school.

DD1 is back to college obsession and complaining of pain.

DD2 went to see a college today and they were lovely.

Another shockingly early “morning” here though ds is in his own bed if awake.
Dd3 is home from uni. Tensions rising in the house. She is cross and scratchy about all the things I have failed at in parenting her. I’m not sure how to help her really and not feeling very positive about anything.

Sounds very hard @ZairWazAnOldLady we can sit alongside in the pub and hope that this too shall pass. I hope a morning cup of tea or coffee brings a small comfort.

Our WiFi has been down for a week. It goes off randomly, could be 10 mins could be 5 hours. Poor DD is so far behind with her modules now, just doesn’t have the energy to do a few days of 8 hours a day to catch up. I got a new mobile sim to link to hotspot but we are too far away. New cables not working. Everything takes 2-3 days to arrive. I think we need a second WiFi provider, another hidden cost as popping to Starbucks/library is not an option.

After a crap nights sleep worrying mostly I decided to channel my inner Chris Hoy after reading his interview reflecting on knowing your dying and finding joy in the small things not the bucket list stuff. I had a 20min walk before work finding joy in nature. It did help reset my head enough to waffle through a 2hr online workshop at work 🤣amazing what you can spout when you really try not to let office politics get in the way.

Oh @HedgehogsAgree thats a poo I hope it doesn’t send DD into a spiral and you can find a solution and reset.

Can anyone print things off for you? To keep ticking over or books on Amazon to access infor off line?

@RainingDucks her approach is rigid so marked assignments will not be attempted until the course work and taking notes alongside is completed on line and her OU record is all lit up green. Which is tricky as assignment deadlines loom. I think a request for extensions is needed but that’s not flying with DD. You know how it is when all solutions are possible but not.

@ZairWazAnOldLady honk honk. Losing sight of the fight is hard as what’s the point. Would it help to think of it as two separate streams. The immediate one of recovery and better health for DS and a second one of settings and education that would suit DS when he is in better form. Your comment about you not even being sure that college see DS as a person is an observation that is so disheartening no wonder you don’t feel there is a prize at the end of all the effort. Hope DD3 settles down.

100% get that @HedgehogsAgree very similar minded DDs we have I think… equally frustrating when you can see ways to support but their rigidity of thought cannot. I’ll sit on that bench next to you and hope that this too shall pass.

@ZairWazAnOldLady I know you, and I know that your family is your world at your own expense. So while I'm sure your DD is speaking her truth, I'm pretty certain it's got going to be the truth. It's hard for young adults these days. They are brought up with a narrative from school that if they work hard they'll see happiness and success. If that doesn't materialise for whatever reason, they have to blame someone, and you are in the perfect position to take the blame. I periodically say to my children "I'm doing my best. This is my best. You're looking at it. So if it's not good enough, I'm really sorry, but that's all I've got."

@HedgehogsAgree technology is wonderful until it isn't. If you've tried a dongle I'm not sure what else you can do. Do you have any friendly neighbours who use a different provider and you could hotspot from? Have you tried making your phone a hotspot for her to connect to? It wouldn't be super fast but it would be passable.

@RainingDucks I'm glad the walk helped!

I've just spent 1½ hours filling DD1's dosette boxes. I'm still bemused that the doctors/chemist won't help because she's too unstable.

@Lougle whats a dongle please?

@RainingDucks I also see a lot of overlap with our DDs. Thanks bench study buddy!

https://amzn.eu/d/03YbNhDG

I meant something like this. But it relies on a 4g SIM card, so if you've already tried that, it's not helpful.

Do you not get a mobile data signal through your phone? Because if you do get mobile data through your phone, you can connect the laptop to your phone to use your mobile data to stream the internet from the laptop.

Thanks! @Lougle i will look into that

If you have an iPhone @HedgehogsAgree its in settings under “ Personal hotspot” you turn that on then in your laptop under WiFi you can “find it” to connect so using your mobile phone data as the internet connection via the phone / it won’t be as stable as full WiFi but will connect you up to download things potentially.

Thank you both! Firm resistance to trying at the moment but that could change as she thinks about it. The thingy from Amazon is arriving by 10pm tonight 😮 that’s quick.

Just spotted there a new prog on c4 an Aussie version of celebrity Race across world type format. If you do get WiFi back @HedgehogsAgree

@RainingDucks oh interesting! There is a new RAtW in April from Sicily to Outer Mongolia which are both places of interest to us. We have been watching Last One Laughing first series. Bob Mortimer is funny.

I love RATW but it gives me terrible itchy feet. Did you all watch Small Prophets? Peaceful funny like The Detectorists.

Dd3 is actually a sweety most of the time. My worry is for her really and to be honest because she makes me doubt my decisions and that’s making ds1 choices harder. In an ideal world college would just be easier to communicate with and interested in providing course info and what’s next info, but they aren’t, and I can’t see how to navigate things. We’ve done individual 1:1 in the community at a previous setting. It wasn’t a good fit at all. Ds is very very social. 1:1 is so dependent on the person and it’s achingly hard to find people with even very basic understanding of his disability. Hes also quite hard work 1:1 and there are few people who can manage, and then there’s the epilepsy adding exhaustion and irritability and outbursts.
I cant see where we fit and a bad fit is very damaging.

The sun is shining and I am planning a veg garden and tidying everything everywhere. Soul soothing.

EOTIC can be social and it doesn’t have to be 1:1. That is the benefit of it being bespoke to an individual’s needs. It can be whatever they need.