The Goose and Carrot Pub Thread

[roaringdragon]

Everyone is welcome, and the thread disappears after 90 days.

Thank you for the last thread @lougle. I hope the doctor was helpful and DD2 isn’t feeling too rubbish this morning.

DS1 has used the last of his EOTAS hours today. There will be at least a few weeks before the EHCP is finalised and funding restarts. He will hopefully have his operation during that time, but it is still going to feel like a long time without that provision.

Thank you - I know you're right. I have literally just gone through this with my DD and she hasn't been to school since April - I know what needs to be done and I know I'm right, but I am so tired of standing up to professionals and authorities trying to tell me otherwise. We have all the evidence we need, he's about to have an EHCNA, I just need confidence to keep going and I am going to start the process of requesting AP this week - we can't waste more time, I'm only just getting it sorted out for my daughter. Finding it slightly hard to get my head around them not being in school for the foreseeable.

Would my DS be eligible for FSM because he is still KS1 age? If so I should look into that!

The train adventure was good aside from them needing to know what was going to happen at every single moment and how many minutes/seconds left!

@MumofMaskers lots of good advice in the pub about practicalities to help you feel less alone. A lot of us have been in your position and it is so stressful.

@MumofMaskers yes, DS would be eligible for FSM. On their website, Contact has a model letter you can use to request a reasonable adjustment.

The need to know every detail is exhausting, isn’t it?

Sorry to hear your DC are struggling @MumofMaskers I too had to pull my DD out of secondary school. We limped through the last 2-3years of primary with increasing adjustments and no EHCP we didn’t get that until year 8 it was “too late” and we pulled her out despite a lot of objections from school that she was “fine”. She really was not and after keeping her at home a term it become very apparent how mentally unwell she was. We eventually “won” EOTAS at tribunal a year later the battle never stops but the biggest “win” is DD is in a much better place with her mental health. I have zero regrets for pulling her out of ms school her “attendance” was 2% at the end of MS. Trust your instincts and the behaviour of your DC as their way of communicating there is always another way to learn. They can’t learn if constantly in fight or flight mentally. Hang in there but also try to carve out some small moments for yourself if you can “oxygen mask” on first analogy.

Yes I understand @roaringdragon I was just thinking it through for my DS as if he gets ill he won't say or take meds or go to see anyone. Luckily he's not high risk and never seems to get ill but its something I need to be mindful of with his putting soil all over the bathroom habit. I think it will be OK for him as long as I clean and possibly buy the cleaning system but can understand you being worried for your DS.

That sounds hard @MumofMaskers Long time since mine were that age. Only thing I found helped was lots of food both before school and immediately after then DS would sleep after that but my DS never was reluctant to go to school until secondary.

@PurringTiger hope you can make the job work for you as you have worked so hard to carve out that chance. The first 3-6mth in any job are really hard finding your feet. Juggling it all is really hard I have constant alarms on my phone reminding me things then the alarms go off and I don’t hear them 🤣DD just shouts mum your phone!

My DH is like that @JumpersFluffy has loads of alarms and doesn't hear any of them, loads at like 6am where he wakes up everyone else and the cat but he sleeps through. Then the cat starts where's breakfast? Can I have a game? Its got a bit better since he stopped work.

ooh we’ve been navigating the dreaded new shoes and clothes dance over the last few weeks bit of a whoop DD2 has tried on & I think accepted tonight a new pair of trainers …helped by DD1 giving her seal of approval. She had had a pair of crocs & one pair of trainers on rotation all year, the crocs got worn to the tutor hub mostly. Last month I finally got acceptance for a new black hoodie after the 3yr old one was falling apart with holes. This is just another one of those energy zapping straws on the back of being a send mum finding clothes & shoes that will be tolerated.

I've been kayaking with DD3 today. It's great fun and everyone is so kind.

DD2 is unwell again. Pain 7/10. Upper central and right side abdominal pain and her right shoulder blade. Lower back pain too but I'm not sure it's connected. Run out of Diclofenac and cocodamol hasn't helped. Temperature went to 38.6°c but I've given ibuprofen and it's come down to 38°c. Heart rate is up, 93 if horizonal, 108 if sitting up and 135 if standing. Feeling dizzy if she sits up so we're going with horizontal. She's eaten a few mouthfuls of rice crispies this morning and the middle of a piece of quiche this evening. No lunch. I should probably be phoning 111 but they would probably send us back to A&E.

@Violasilkie i am so cautious with DD not because she has a condition but because I can’t get her to the GP or A&E same as your DS. It would be traumatic.

@JumpersFluffy win! Sounds little but new clothes/shoes is such a rare event. In fact the only cost that is less due to ND. Thanks for work honks, it’s tricky with kids not being the only family that needs support isn’t it.

@Lougle i don’t know what the readings mean, have you got an upper limit in mind before you call for help?

Ideally a resting heart rate should be between 60-100bpm. Temperature should be 37-37.5°c, although they don't get excited until 38°c in a hospital situation. I would probably hope that if I phoned 111 they could prescribe some Diclofenac, but I think they would be reluctant because of the pain location and history of known gallstones in case it's cholecystitis. But we've been in and out of A&E so frequently recently and her liver function isn't actually that bad, so I don't really want to. I suppose if she started vomiting or her stools changed or she went yellow I would want her seen. I just wish her pain would resolve.

Sorry DD2 is so unwell @Lougle

Yes it's like that with DS @PurringTiger I worry about him needing medical care as he would be very hostile, which could end up ending very badly, and also we are held responsible for any inane behaviour. So I have to always think of what inane ways could DS use this. Like with the bath I think he might well enter through the window and then jump into the bath with soil on his shoes so we have the issue of could the bath survive that and impact of soil. Though he loves baths so hopefully he will be careful but we have decided to stick to reinforced baths which narrows options a lot but makes a decision closer. Soil I will just clean as usual.

@PurringTiger IMO, the thing that’s missing is that when she has hurt herself after a drop attack, they don’t give her regular pain relief. She will complain to us and them about the pain, but rarely asks for painkillers. I’m not sure she can remember what they are, until someone prompts her memory, by asking if she wants them?

A & E told them a few weeks ago, when she had a broken rib, to give her cocadamol; and they told the care staff again on Saturday to give her regular pain relief. (After we had asked them to take her to A & E, because she was white with pain, when we talked to her).

GP in the family has said before, it’s disability discrimination, because she hasn’t the language to insist on pain relief! I suppose it’s another thing to discuss on Tuesday with the consultant!

@JumpersFluffy great for clothing wins.

@Lougle I hope you are still at home this morning and not in hospital.

@MumofMaskers how did it go today?

@Lougle hope you are home and not A&E

@PurringTiger This morning was mixed, he was really distressed and saying he didn't want to go and after trying for a while (there was a lot of screaming in the playground and attempting to escape) I said fine let's go - but when the gate was opened he decided to go back in. Very much needing that control/choice. He managed to reluctantly separate from me with the member of staff he's assigned to for soft starts and stayed with her for 20 minutes - that was all I could do as I had my daughter with me and she has tutoring at 09.30. They said the usual - he's fine once you've gone, he had a nice time but they don't see the cost. It also turns out the member of staff who is supporting him is basically doing it on good will and doesn't really have time - she isn't even supposed to be working on Mondays and Tuesdays. I had an email from the school at the end of last week basically confirming there is no available member of staff so after this morning I have now gone back and requested that we need to look at AP. I know they will say no to this though.

Am also meant to be getting my daughter's draft EHCP today, and have now had an email about her AP, they're basically proposing 15 hours of education at an AP for children out of school, but it just sounds like more school. Sigh.

Can they formulate a care plan for it? Once she's crying in pain the pain relief won't work as well. They need to be giving it regularly, regardless of whether she complains because then it will build up to an effective level. I don't think it's disability discrimination but it is neglect.

@PurringTiger not in hospital but she vomited for a couple of hours overnight and had a vasovagal episode. I have a GP appointment for her at 12pm. She's lost 2.5kg in a fortnight.

@MumofMaskers sorry the morning was so tough. With DD2 (in year 10), one day she turned to us and hissed "You are keeping me here against my will." At that point the year head looked at me and said "Stop. Just stop trying to bring her. It isn't working." That was her last day in mainstream.

@MumofMaskers AP has to be suitable. If it isn’t suitable, it doesn’t relieve the LA of their duty. You can go back to them.

@Lougle I hope the GP appointment went OK.

DS1 has some skin breakdown on his back. It isn't healing even though I have been dressing it. I have taken a swab this morning to check it isn’t infected, and I have asked the community nursing team for some different dressings.

Sorry you have had a difficult morning @MumofMaskers such a lot to juggle. Is a forest school environment something that would suit either of the children? My DD responded to that when unable to access a classroom. But I had the usual it was a shorterm “fix” and when she appeared to “cope” they removed it.

@Lougle really hope the GP can help. Is keeping a food diary helpful to identify triggers? Not that you have time to juggle so many different demands but would DD2 be able to? I had a year of gall bladder attacks before I had it removed & it wasn’t always obvious what triggered it but a build up of small things did.

Monday morn has been positive so far with DD2 but DD1 is full of head cold post her holiday so I’m expecting that to go round the rest of us now plus geez it’s hot today 24c plus humidity I’m melting this afternoon.

Sorry missed the update on DS1 @roaringdragon that’s not nice poor DS1 I hope the nursing team can help & it doesn’t spread.

@roaringdragon I hope the DN are helpful.

@JumpersFluffy maybe we do need a more detailed diary. We had been following the very low fat diet last week, and yesterday she only ate 2 spoonfuls of rice crispies and the centre section of a quarter of a small supermarket quiche. No pastry. The doctor was lovely today, checked her over and prescribed more Diclofenac. The Cocodamol isn't very effective and the side effects aren't great, so we're going to avoid it if we can.

It's been a morning of horrible phone calls - every time I have this it leaves me feeling so stressed and anxious. We had the initial contact about my daughters draft EHCP which is coming later this week, they said they're naming the second most local mainstream, a catholic school (not suitable for us for a start) as our closest was the first one we pulled her out of. They are have 'ratified' our independent EP report and are rejecting it, so none of that will be in her EHCP. I knew it would be a fight but my heart sinks. Can't cope and it's only Monday afternoon, everyone is climbing the walls and I just want to hide.

@MumofMaskers I do something with my DCs which is similar to how I make choices myself. If they are unable to decide (whether it's control, anxiety, not sure) but a choice has to be made (e.g. going to one activity or another, they have coped with both before, I genuinely don't mind and I think they will be happy if they do one), I say "if you can't decide, I'll decide on X" and then see how they react to that. If it's myself I start to carry on the path to X and see how it makes me feel - was it really the right choice - if the DC then I see if they are acting as if it was the right choice for them.
Being paralysed by choice is hard to get out of, but this somehow also provides a way of saving face for them (e.g. no, I don't want to switch to drums instead of guitar now you've said that, or yes, what a relief, I'd much rather switch but couldn't make the choice myself).

@MumofMaskers remind them the draft must not name a placement or type of placement. When you get the draft, you can and should still propose amendments based on the independent EP report. It is worth contacting the catholic school and any others you think may be consulted - consults are notorious for being inaccurate &/or incomplete.

@Lougle I hope the Diclofenac helps.

@JumpersFluffy I hope DD1’s cold doesn’t spread through the rest of you.

Thanks @Lougle and @JumpersFluffy.