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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.

@Lougle I am glad DD2’s ADHD assessment went well.

@RainingDucks I second a colour coded spreadsheet. Although we use red for not secure on the topic, working up to green for secure topics. Making revision cards as you go along rather than leaving it all until revision time helps too.

I’m not sure DD2’s revision technique is particularly helpful, but she writes out the information until she can regurgitate all the revision cards/notes. DS2 has been using Tassomai for the subjects that is suitable for. He does most of his revision whilst on a treadmill or exercise bike. DS1&3 don’t do revision outside of their tutor hours. Similarly, they don’t do homework. They can’t work without direct input from someone. Your DD2 may be the same as them?

Does your DD receive any study skills support?

@drspouse the LA must give you at least 15 days to comment on the proposed amendments. After issuing the original notice and giving you at least 15 days, if the LA isn’t going to make any amendments or the amendments made are a result of your representations, there is no further legal requirement for the LA to consult with you further/issue another draft. Based on Reg 14 and SENCOP 9.125. They only need to issue a revised draft/give you further time to make additional representations if they propose other amendments.

They said it wasn't final because they were still consulting with schools. I just want to get on to appeal frankly.

That’s right, the consultation period should happen before the LA finalises. That is because when the LA finalise, they should name the type of placement and placement (where applicable). They can’t do that if they don’t consult.

If the LA is in breach of the timescale for finalising following the AR, you should speak to the solicitor about a pre-action letter.

I think that's our next step. They are way over the timeline.

Thanks @HedgehogsAgree & @ExistingonCoffee some approach’s to think about. We’ve covered all the content finished that in January hence why I thought she’d be ready for June. It’s like her brain has just put the brick wall up again. Yet when we’ve done quick revision quiz stuff online she’s doing really well then give her exam questions she goes blank, panic, spiral and can’t unblock. Ironically she’s self teaching herself Korean for fun developing lovely study skills lots of notebooks, writing out, testing herself it’s really interesting how her brain hasn’t made the connection yet between those study skills as she’s hyper focused on her special interest versus a different topic she’s good at but lost interest. She still needs to sit one other exam in June as she’s already completed the NEA parts & I can’t push that one.

Good news @Lougle hopw the diagnosis helps lead to other support.
@drspouse hope they finalise the EHCP soon so you can keep moving the process through.

Can I ask a quick question to any of you who’ve applied to be deputies? When it says you must not “hold any money or property in your own name on the person’s behalf” how does that work if you are already an appointee for benefits?

We are slowly recovering from covid here, finished anti-virals. DH is 3 days ahead of me and OK about half the day now and half needing to sleep. I think we will both be better by the weekend.

DS is still fine and wandering the garden and sticking to the paths. The cleaner has come today and DS was good - we said if you want the cleaner to do your bathroom then leave the door open and he left the door open and is walking round the garden. We did a pre clean so it was less bad. She is very good and does just under 2 hours.

DD was her usual whirlwind of activity and left at 5am on Monday for a week's rowing coaching of a university college. She's back on Friday. We got the refunds for the Sri Lanka flights in full today. So only thing not refunded has been the seat bookings but those should come and aren't that much. Still feeling out of it but hoping can do garden this weekend.

DH didn’t do any revision much, afaik, because he doesn’t understand what he reads, but then he did a subject with lots of diagrams, charts, etc. He underachieved compared to his intelligence, but always did just enough to end up as a well paid professional. In our exams, its pass or fail - marks don’t matter per se.

DD2 used coloured cards; but her degree was in her special interest. She could study 12 hours straight, without a break!

@ZairWazAnOldLady we have only applied for personal welfare deputyship. DS1 doesn’t have property or capital (other than a relatively small amount in a CTF that I am hoping the provider will release to me as industry standards allow and if they don’t, we will either have to make a single issue application or hope the situation around CTF/JISA is resolved sometime soon) and his only income is benefits, so being appointee will suffice. But you can get appointee accounts.

To be honest I think we will only do welfare, though possibly it will need revisiting. I’m appointee for benefits so that’s sorted but it goes through my account so I don’t see how that works with their restrictions.

Ds had yes another seizure this afternoon. I feel a bit empty about everything. Hours at college have been reduced to 1.5 three times a week and apparently there won’t be provision for him next year. It seems pretty pointless, he’s behaving badly there which isn’t really something he does so I’m a bit worried. It’s all fairly pointless. I don’t think they really see him as a person at all.

@ZairWazAnOldLady if you apply for property and finance deputyship, an appointee account is OK. I’m sorry DS has had a seizure. If DS is to move post 16 placement in September, the LA must finalise the EHCP by 31st March. If he is to move later in the year, they must finalise at least 5 months before the move. If the college is named in the EHCP, they can’t just say DS can’t attend next year.

@ZairWazAnOldLady I've opened an appointed account with Lloyds. It's in DD1's name but she doesn't have access to the account and the card is in my name for spending on her behalf. I can't have internet banking, which is a bit of a pain but I can use telephone banking.

I'm feeling a bit rubbish tonight. I'm realising more and more that someone I know thinks I'm playing the system with DD3 (and possibly DD2) to get them cars/driving lessons, etc. I'm pretty certain that they legitimately qualify - neither can go out without another person (in fact DD3 generously offered to walk 4 minutes to the village to get me eggs on Sunday, then realised that she couldn't do it). The aim of driving lessons is that they will be able to drive to/from school, where they will meet their designated person. But it still feels crummy that someone might be thinking that I'm cheating the system. I'd far rather that they didn't qualify.

@Lougle those types of judgemental people wouldn’t want to swap places, though, would they?

Easier said than done, but try to ignore. DDs qualify. There was no doubt about that since all were paper-based assessments. If there were doubts, there would have been a telephone/video/F2F assessment. You have tons of evidence.

@Lougle dss goes into my account and then I put it in a savings account to keep it separate, and then pay everything from there. It’s intended but to be honest I pay for a lot of things for him anyway. I find some of the thinking difficult. For example ds really needs the heating on in winter and aircon in the summer. We absolutely wouldn’t do that for ourselves but I feel uncomfortable about him paying for heating particularly because it’s so expensive. The seizures increase without. So I end up paying more than I can really afford. It’s all uncomfortable. As far as people thinking you are gaming the system. I have (very) close family members who have the same opinion of me receiving any support for ds. How fortunate and privileged they are not even to have to recognise disability let alone be kind about it. It’s lazy thinking and I’m glad I’m not such a blinkered judgemental dick. If the girls weren’t eligible they wouldn’t qualify.

I had to drive ds home after the seizure a couple of junctions on the motorway. It felt very lonely.

@ZairWazAnOldLady its a lonely old business this life no matter how many people are around you. Honks for you and your dear boy - would we expect anyone to be on best behaviour when suffering an exhausting condition. Come on college piece it together!

@Lougle bollocks to judgemental bystanders. What do they know? Nothing, absolutely nothing. Keep going with DD2 and DD3’s independence.

@ExistingonCoffee I’m thinking of you.

@BlueandWhitePorcelain same. Revision is alongside studying not a separate thing. Passing is the goal and the grade never reflects ability. Hope your grandchild is doing well and DD2 is getting help.

@ZairWazAnOldLady the driving home after a seizure sounds awful. I know I say it but I do wish we were closer! How long do the seizure after effects last? Do you get much warning of an impending seizure?

The thought that your DS shouldn't qualify for support is hilarious.

DD1 is country-mile obviously disabled. DD2 is so clearly autistic that the ADHD assessor said 'I'm going to want to hear mostly from DD2, then at the end I'll ask Mum some questions. DD2 why have you decided to seek ADHD assessment?' <DD2 gives scant answer and looks awkwardly at Mum> 'Do you have any other diagnoses I might need to take into account when doing this assessment? 'I have autism'. 'Yes, I picked that up... During this assessment, I'm mainly going to be asking Mum the questions, but if DD2 wants to join in feel free...' 🤣🤣 But DD3, I can understand, is complicated. She's people driven and over empathetic. She can't stand people being unhappy so she's a 'fixer'. She's incredibly smart and an all-rounder in that she can do most sporty things (a little clumsy due to inattention) and can pick up any craft within hours. So I can see that unless you really know her, she wouldn't seem like she has issues.

I'm the same with DD1's money. Her UC goes directly into the account in her name, and the PIP goes into our account but I think put it in a Starling Space to keep it separate. I've worked out that her portion of our bills is about £400 per month but I can't bear to take it, even though I should. So I use her money for things I directly purchase for her but don't take anything towards household running costs. It's silly though because her money has been building up because I spend ours instead of hers, and she's started to have UC deductions. Once she's having Social Care she will have to contribute £390 per month to that, though, so that will be her PIP gone.

You must take the money for her bills etc @Lougle. I’ve done the opposite, I take that chunk but pay for everything else🤷🏻‍♀️. It’s ridiculous but I find it hard not to. Honestly in my case I just think I need to be a bit more grown up about it all.

The thought that your DS shouldn't qualify for support is hilarious.. I think it’s that they think dh and I should be able to just absorb the extra expense and work. They honestly don’t understand AT ALL what is involved. I listen simultaneously to how difficult life is for them with the expense of children at university and driving them here and there and am just baffled by the blind spots. I actually come from a very large and loving family, so it’s even more surprising in a way. I hope my children do better.

Seizures as far as I can tell are always associated with colds/sore throats and not very severe ones. The trigger is temperature rise so spiking a fever or in this case being a bit under the weather and then working hard and getting sweaty. But it has been brewing for a while. The oppositional behaviour and general upset is always the days before and I feel like we got stuck in that stage (hence the problems at college). He seems to struggle with language so can’t parse the sentence or can’t hear what you say, mishearing and not getting it adding to agitation. To me his face changes and I had the same experience with his sister when she was epileptic. His features become heavier, skin paler, eyes glassy and slightly unfocused like a Japanese cartoon. For want of a better word he looks a bit greasy and just woken up.

My house is SO messy I feel like I’m tripping over boxes everywhere. I can do a room in a day, but there are so many rooms and so few days that I’m not needed elsewhere.

All that being grotty and no news to anyone here, we have woken to the most glorious early spring sunshine and ds is very jolly.

Thanks. Social Services have offered her 1:1 support. First of all, DD2 blamed me for the referral to SS, saying it was all my fault for walking out. I didn’t tell anyone at Maternity, I was walking out - I was just a visitor. I suspect her OH did, when he walked out. Then, after the student midwife touched the baby, she was screaming all night and the next morning - I imagine that raised more alarm bells! I told her, it was her mental health that triggered the referral!

DD2 wanted nothing to do with SS and didn’t want any 1:1 touching the baby! I told her, she does need to cooperate with them, and accept support from the 1:1. More concerning, she told me she doesn’t want to live there anymore with OH. I told her, one week after the birth was not a good time to make relationship decisions; and I am not giving any advice on that, as she’d only blame me later! (She always blames everyone else and never takes responsibility for her own behaviour)

@ZairWazAnOldLady When DD1 was home for 6 months in 2020, because she was home for her birthday when lockdown happened, our gas and electricity bills doubled. We have the heating on more for her in the winter, and a fan on her 24/7 when it’s hot in the summer; plus there’s the extra laundry! She also has to have a high protein diet. Many items of furniture have got broken during seizures over the years, which we have always paid for. (The new stronger bath and retiling were £1,200 alone)

I worked out how much is her share of the bills, per day at home and charge her that as board - which we are entitled to do, so long as we treat all DC the same. The other two have left home. DD1 gets DLA care for the days she is at home and imo, that’s what it is for. We wouldn’t have her home 30% of the time, and only do so, because the care home asked us to, for her mental health. One weekend home every 6 weeks would be enough for us, same as we did in our 20s, after leaving home.

Yes, at one time a cold was enough to trigger so many seizures, she’d be admitted to hospital. The emergency protocol was amended to give her clobazam every day, the first three days of a cold. She always gets the flu and pneumonia jabs, because we dread to think what would happen with a temperature!

There is usually aggression before, during and after seizures, although occasionally if she was in a bad mood before, when the seizure finishes, she’s her happy, sunny self again. Seizures can change mood completely!

Maths tutor thinks DS would fit in well in the mainstream RP... That would be the person who has done the most academic work with him over the course of the last 9 months.

@ZairWazAnOldLady and @Lougle use the benefits for DS and DDs’ costs. That is what the money is there for.

We use benefits towards bills. We have huge electric, gas and water bills. So much so we have had our usage questioned in the past. What DSs get in benefits doesn’t touch the sides, especially for DS1. We spend far more on meeting their needs than we receive, whether that’s bills or otherwise.

This morning DS1&3 were at home busy with the EOTAS/EOTIS packages, DH was working from home even though he doesn’t normally on Thursdays, and DD2 has been working from home rather than going in to university, so I escaped to the garden with a with the intention of ticking off some paperwork from my long to-do list. Only I fell asleep. To be awoken by my phone with DS2’s school calling.

Thank you @HedgehogsAgree. The anniversary of DD1’s death is on Saturday.

Thinking of you in a hard week with that anniversary @ExistingonCoffee.

Do you get any time to reflect around this time @ExistingonCoffee? It must be hard to balance your grief with the ever present needs of your living children. Thinking of you and your family.