The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

Glad you have new bedroom chair @TheGoodCat and can get rid of sad memories chair.

DS definitely prefers not having keyworker round, he never appears depressed and is active around the house and garden, does fair amount of bathing (most days) and cooking, his own washing etc but there is something very strange about the way he is. Its not like depression, anxiety but like a strong desire to have no interaction with the world ever like he is an alien or frozen in an ice cube. Its like nothing can reach him and he wants it that way. He'll get irritated if anyone tries to break that. It still doesn't feel like its him here just a random person who is like an alien but happy enough being an alien. I don't know where we go from here - he responds positively to work on house and garden so we keep doing that. He responds negatively to all attempts at interaction / communication. I sometimes wonder about schizophrenia but that's such a huge diagnosis with meds that made him really ill and hospitalisation and he appears happy enough but we are stuck. DD thinks he wants to be stuck and doesn't want to rejoin the world but would if say we both died and he had no alternative but that may be wishful thinking on her part. She thinks he's being deliberately incompetent as he prefers life simple. Very hard to know. Its concerning for long term as he won't consent to anything which leaves us all very vulnerable. Though there are tiny flickers at times. He's less angry with DD now and tiny bit of interaction and never anger towards me. DH he seems to be angry easily with. He is most angry with "support" and education and would physically fight them it came to it though does warnings first which they normally understand.

@Tulipandmagnolia if he is happy in the garden it’s great that you are making the shed more comfortable and beautiful. You have said he loves animals could he have a pet to care for in the shed to maybe give him purpose, something that floof wouldn’t be too interested in.

Thanks @TheGoodCat He used to love animals but he's been similar with the animals to people since hospital - pre he would feed and cuddle them, then he came out and would not feed, cuddle or interact with them. Very odd. Now we are starting to get a little bit of interaction with cat and chickens though chickens it may be they follow him rather than he does anything but we've seen him open curtains for cat and one time carry the cat from the garden. But he's a very long way from being able to look after a pet and it saddened the rabbit we had pre hospital.

We have things we can do on house and garden would say for a year or so, maybe even longer with needing permission for bedroom so will just carry on. Its a bit frustrating he won't agree to anything but DD thinks we have to wait and think she may be right and as she is living life at 100mph and living / achieving well it helps. She's in Austria right now, two planes to get there, first one 5 hours late so connecting was missed then next one had to divert to Munich but she's managed that alone and still in good spirits. Though I wonder sometimes if as DD is so great at everything maybe DS gave up as he could not beat her. He's certainly acts jealous and annoyed at her success.

Thank you all. You are a comfort.
I’m not sure where we can go from here. Ds is very angry/upset pre and post seizure and it all seems so incompatible with the activities he likes. How do I keep him safe and active and how do I manage things socially for him? If college couldn’t accommodate him how will clubs and activities?

And I keep feeling really faint which isn’t exactly making me feel confident about taking him out and about.

@TheGoodCat I hope the new chair fits and is acceptable.

@Wellzizizbetter I’m sorry about DS’s seizures and you feeling faint. It isn’t a given that clubs and activities won’t be able to meet needs just because college couldn’t/wouldn’t accommodate DS. Not all clubs &/or activities will be able to, but some should be able to. Particularly those who can work 1:1 or even 2:1 or 3:1, and particularly those where DS’s own carer or family stay during the activity.

@Wellzizizbetter I wish you could see what I see in you. Your tireless dedication to all of your children, but especially DS, is inspiring and humbling.

What I have come to realise is that these 'special colleges' are SEN lite. They exist for those kids who are in their happy bubble and can be coaxed along the fluffy 'curriculum' that pretends to be bespoke but is not. The minute they don't conform to the 'bumbling along the track' curriculum, it's too much effort. The reason we don't realise it is that there are kids with more severe learning needs than our children who thrive, largely because they don't have any idea that there is something they 'should' be doing. Perhaps that is a bitter perspective, but to me it is the only explanation for why colleges have destroyed your wonderful boy and my wonderful girl. They are left with a sense of rejection and failure that is not theirs.

I watched DD1 at hydrotherapy on Thursday and I wanted to cry. The physiotherapists were delighting in DD1's crazy ways. When she said 'I've got fatigue', the physio chuckled and said 'I'd hate to meet you without fatigue, DD1!' I saw a glimpse of what the right provision could do for her.

DS has a tough life. He's living with seizures that come with no notice that he can't understand. But you have it tough too. You live the seizures and the worry before and after.

I think that when we're brave enough to accept the adult SEN world that isn't focused around 'education' in the sense of a curriculum that must be followed, we'll find a space where our DC fit and are celebrated for what they do and can do.

I've been worried about DD3's growing independence and what it means in terms of her PIP claim for Motability, because she's managed a few trips out with a friend to towns 10-12 miles from us. Today has shown me that I really don't need to worry because she is far from fixed. We were invited to a restaurant in the village with DMil to celebrate their results. DD3 completely shut down because she recognised one of the servers from her primary school days. She couldn't choose food, or drink. She couldn't talk except for single sentences. I had to take her outside to reset, then I had to walk her home as soon as she had eaten. It was really sad to see.

I think the problem is they aren’t special colleges. They are mainstream colleges with a SEN unit/department. Very different. The latter are easier and cheaper for LAs, which is why they are pushed by LAs.

@Lougle I’m sorry DD3 struggled. Even without today, you definitely don’t need to worry! A few trips out with a friend doesn’t mean losing enhanced mobility.

Ds looks awful, grey and exhausted, and is on a hair trigger and has been since Friday when he had his last seizure. I don’t know why it’s so awful this time but I’m just feeling a bit hopeless. I seem to constantly having to hear how difficult ds’s disability is for everyone, as though if I just did more it would all be easy. I can’t make it go away. I will get back into the swing of things. All the ideas for things to do really help and the kindness. Thank you all.

You deserve the support you get @Lougle and frankly the cars seem like a key part to becoming braver and more confident. Your girls are amazing. For goodness sakes let yourself enjoy them spreading their wings. You’re doing it and it’s working! You’d be insane to stop anything till they’ve well and truly outgrown it.

@Wellzizizbetter you can't do more than you're doing and you do more than many, many parents. If hard work would fix our kids SN, none of us would be chatting here, would we?

I'm not going kayaking tomorrow. DD1 sent me long messages about her terrible thoughts and how scared she was of going to Nanny and Granddad's, begging me not to make her go for more than an hour. She loves them dearly and insists on visiting them daily, so I know that this is her illness talking, and nothing to do with them. I can't go and enjoy kayaking and leave DF to deal with it all. DM will spiral into a doom cycle, blaming herself for DD1's unhappiness. Besides, they've got to have her on Monday because DD2 has her college enrolment.

Sad to read this - Calvert trust in Devon closing
www.bbc.co.uk/news/articles/c3r0rdw13e7o

That sucks. I always hoped the geese would holiday there together one day.
If anyone wins the lottery ….

@Wellzizizbetter DD1 has never really been able to tell us much about how she feels after a seizure, apart from she has a headache, or she has pain in her muscles; so she could never say

“I’ve felt wiped out for the last three weeks since that last seizure!”

Partly, because she’s never had three weeks between seizures; but mainly because she can’t quantify how she feels pain, exhaustion, brain fog, etc. Once, she couldn’t speak for several days after being in non convulsive status (a frequent occurrence in those days).

However, DH knew a boy at school (a grammar school, so quite able), who had tonic clonics - he was wiped out for several weeks after one.

Maybe, it’s the same for your DS? I think some seizures are bigger than others, even though they look the same.

Oh no @Beachgosling. That is sad news. I hope Calvert Trust’s other two centres can remain open.

@Lougle I’m sorry you couldn’t make it to kayaking and DD1 is struggling.

How is DS today @Wellzizizbetter?

I was reading something this morning that made me think of one of Pennywise’s DS. She hasn’t posted for a long time. I hope she and the others who used to be regulars in the Pub are OK.

I often think of other posters too and wonder how things are going.

I made an error by gathering all the medical evidence for DSA and have only just noticed eligibility is only if you qualify for a maintenance loan which DD won’t do until next year. I think I will submit it to the OU anyway as it’s really useful and will help next year.

Honk honk for all the ongoing really difficult situations.

Yes, I hope they aren't posting because things are going well, or they found support that suited them better. I think the pub threads can move so quickly that it can be hard to step back in after a break.

I'm a bit baffled. DD2 has an EHCP naming the college. They will have been sent her EHCP draft to agree that they can meet need. Tomorrow we're going for enrollment and I have to take her EHCP with us. Now, her teacher from school (who is kindly going to come with us) is saying I also need evidence of her diagnoses. It's ok, but it's a lot of paper, and her EHCP will say she has this stuff anyway.

Oh! A question: For those of you who have ehubs for EHCPs, does the hub allow you to see the contents of section K? I can see a list of contributions, with details of who they are, what their role is, and the date of the advice, but I can't actually see the reports they provided.

@Wellzizizbetter Sorry you are feeling faint. I hope you can take some time to look after yourself. You are doing an amazing job.

Sorry you couldn't go kayaking @Lougle

I hope Pennywise's family are OK and anyone else who used to post.

Having DHs birthday weekend and had afternoon tea yesterday and been out to Sandringham today and had red velvet cake which DS loves. DS ate all the macarons in the night which were for him, the silkies joined us for afternoon tea yesterday and cream tea today, didn't know they ate scones but they were singing and DH had 3 chickens at his afternoon tea. Had Sunday lunch at Sandringham so we are well fed. Told DS about the red velvet cake and he was there in a millisecond. We chose it for him really.

@TheGoodCat did you see the consultation about DSA earlier in the year?

Happy Birthday to DH @Tulipandmagnolia.

@Lougle the college should have been sent a copy of the finalised EHCP. As well as the list of information that has informed the EHCP in K, copies of the actual information should be attached as appendices. Some LA hubs allow parents to see the advice and information submitted, some don’t, some do but aren’t easy to find. Don’t take it as gospel as I’m not 100% but IIRC, I think in your LA the information is on there but separate from the EHCP document. If you want copies but can’t find them, you could ask for them via email.

If anyone is reading but put off posting by the pace of the thread, don't think you have to read the whole thread or keep up. You can just jump in.

@inthequietofdawn im such a slow responder DLA took me 4 years and I thought I was super fast getting DSA evidence sorted for 2nd year…. Turns out I am very organised for DSA but for the wrong reasons. What’s the consultation trying to change please?

@TheGoodCat the consultation was about stopping funding for assistive tech other than in exceptional circumstances. The outcome will be published in the autumn.

@inthequietofdawn thank you. I’m not sure what could help DD, which is why I thought best have the assessment.

@inthequietofdawn that's the bizarre thing. You can access section K, but it doesn't have the reports. Just a list of who provided reports. When we got paper EHCPs, section K was part of it in its entirety.

@Lougle that isn’t uncommon on some LA’s hubs. In some LAs, the info is there but elsewhere or the hub and in some LAs it isn’t. BTW, you don’t have to use the hub if you don’t want to. You can ask to go back to paper or email if you want. The LA will huff and puff and mutter it isn’t possible, but it is.