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.

I wanted to say thanks to everyone for their posts on my questions around boundaries. I read through them again today and there was so much helpful information and support. I’m intending to go back over them again and make a summary of the key points so I can process it all. My brain’s a bit full at the moment so I need to re reread everything.

@Lougle Happy birthday my dear. I hope coffee was fun and you had a good day.

welcome @MumofMaskers mine are all grown up but I don’t think it matters. The pub is for talking about anything. I think most of us appreciate somewhere to be understood and some social life even if it’s on line. The thread just rolls on and you don’t need to read back and can post intermittently (which I do a lot at the moment because life is a bit full on).

Today went ok. One more day done.

Not only that, some of us are going through it with DGC, and watching another member of the family over their DC, because it’s genetic!

They must be able to organise themselves, because when DD1 was at specialist FE college, she was funded for 1:1, even though there were already a teacher and two LSAs for six young people. She had the same 1:1 for two years. Then, she had a different one in her final year. We understand people need a change after supporting DD1 1:1 for several years!

I’ve been reading about medical exemption certificates. Should I get one for ds1, as he’d qualify with his epilepsy? He gets his prescriptions free because of UC anyway. Does the money come from different pots iykwim?

Stick with UC. Med ex doesn't give sight/dental, although it can be combined with an HC2 Certificate for low income. The UC exemption covers sight tests and dental, plus refunds on travel costs for hospital appointments.

I didn’t know you could get travel to hospital (we don’t need that but I know a person who might. Thanks).

Challenging morning after 4 good days I’m not suprised. DD2 currently curled in a ball rolling herself up and down the hallway sigh because she’s coped so well all week but probably run out of spoons and she’s supposed to do 1hr on her least favourite subject at the tutor hub this afternoon in a group. I’m holding firm at the moment as I’m aware she’s going to miss a few weeks in a row later due to various clashes and the LA still track her attendance there & review funding every 8weeks so it’s a tightrope we walk. Hoping this too shall pass..

I also have a migraine circling but have to get something finished for work, my brain is so so tired already this week and it’s only been one week back. Plus DD1 is due home today from holiday, I love her dearly but I’ve not missed having another adult to coordinate around as she has quite a late schedule of training & eating in the week and often wants to chat just when I’m desperate to go to sleep & “clock off” being mum for the day. She’s generally a very easy person to be around very kind soul but is also growing into an adult now with her own needs & wants she would have been ready for Uni this year but is going to keep working & hopes to go next year.

@Zzzzzs if you pass the information on to the other person, it is the low income healthcare travel costs scheme (HTCS). It is a refund (or partial refund) of costs rather than transport itself. Occasionally it can be paid in advance. Hospital transport is separate.

If you think there might be times DS doesn’t meet the criteria for free prescriptions via UC, it can still be worth getting a medical exemption certificate. Although you could always do it at the time DS won’t be eligible. Otherwise there isn’t much point.

@JumpersFluffy I’m sorry it has been a difficult start to the day. I hope your migraine eases and DD2 makes it to the tuition session.

For someone who doesn’t like noise, DS1 is making an awful lot of it right now.

https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/ Here's the information about claiming refunds.

Phew DD2 made it through and regrouped after the highly anxious behaviour this morning and was all chatty afterwards about the tutoring group! Fingers tightly crossed that group will be bit easier next week. Hope others have now survived the week in one piece. DD1 is now back in the country as well which is a relief even if still travelling, after all the airport chaos earlier in the week I was a bit worried she may have got stuck or delayed.

Just catching up a bit.

Lougle I hope the college manage to sort out Dd2's support quickly. It really isn't rocket science.

Drspouse I hope you are ok today. The day after the funeral can be really tough ime.

roaringdragon I am sorry that Ds1's operation was cancelled and hope you get an new convenient slot soon.

JumpersFluffy well done to Dd for getting through the first week. Hopefully it will be easier going forward.

MumofMaskers welcome.

DD has been refused a provisional licence on medical grounds. The letter doesn't give any detail beyond 'you have an ongoing neurological condition'.
We can appeal but it has to be through the Sheriff Court with no details about how to do that and as we don't know the grounds of refusal how can we present a case. No details about how or even whether we can see the medical report and reasoning for refusal.

Hello everyone, it's been a while! I slightly dropped off the edge of everything once our tribunal was done and dusted. I was just absolutely exhausted. Couldn't even summon the energy for browsing the internet 😂

DD has now started at specialist for Y7. It's obviously very early days and it's not a magic fix but so far it's going well.

Welcome @MumofMaskers - this board has been invaluable for me for advice on the endless soul-sapping processes around EHCPs.

@RavenLaw it is great to hear from you and see Y7 has started well.

@NoHaudinMaWheest oh I’m sorry to read that. I don’t know how appeals works in Scotland, but you can find the contact details of your local Sheriff court here. It might be worth looking for a law centre locally.

@JumpersFluffy I’m glad the day improved and tutoring went well

@NoHaudinMaWheest it's awful that you don't even know why it has been declined. Poor DD.

@RavenLaw lovely to see you. I'm glad y7 has started well.

@JumpersFluffy it's not always a smooth path, is it? We need a survival tool belt to get through!

Today has been a challenge. DD3 has been finding her new friendship tricky to navigate in areas, although positive, so I've had phonecalls from school staff. They are really committed to DD3's wellbeing so they are all over it, though, which is great. However, they've also realised she can't do the sport BTech because it's a 2 year course and she's likely to leave next year.

DD2 has, overall, had a fantastic week at college despite the support issues. Monday was a write off, but on Wednesday they supported well, on Thursday she went into class despite support not being ready for her, and today she got out of the car to go and find her TA without me. Over the course of the week she has been speaking to staff, she's been making notes in her notebook (a previous difficulty), she's been answering questions, she's voluntarily gone to the front of the class to write on the whiteboard, and she's demonstrated the correct handling of a chinchilla when the tutor asked for ideas about how to help it back into the travel carrier.

DD1 has found the week very hard. No provision in sight for her, and seeing DDs return to education has made it harder. Tomorrow she's going to Nanny and Granddad's while we go kayaking (I didn't go last time) and she had a complete meltdown about the new diet and how awful it was that she couldn't have Granddad's cake. I've decided to stop it. I just can't keep having her moan at me all day every day about the unfairness of her 'new f-ing diet. We were referred to the dietician for it anyway, so I'll wait for that and see what she says then. It's just all too much.

We've mainly been in the park, and driving home endlessly today. Very tired. One of our normal Sat activities has been cancelled at least so tomorrow will be a bit more restful.

@Lougle

Glad DD3 is being well supported and making good progress with friendships. Such a relief when others get it and offer the right support.

So pleased for DD2. Not good about the inconsistencies in TA support etc and I do hope College sort it out but brilliant in spite of that it’s been a positive week.

Sorry about DD1 struggling. I think sometimes it’s best to take a break especially if causing such high distress. Sometimes it’s best to be pragmatic. We had an issue with insanely high amounts of Movicol the GP prescribed. DC had meltdowns and panics over taking it and the possibility of any uncontrollable, consequences. It wasn’t worth it in the end and I abandoned it. The issue still remains to be resolved but better than causing additional trauma.

@drspouse

Hoping you have a restful day today and weekend.

DC had a tentatively ok week at College. He doesn’t tell me much at all but he seems to be slowly finding his feet. I’m not concerned about his ability as much as keeping up with the independent study requirements and self management. That and sticking it out and the travel long term. It’s still very early days.

I’ve been keeping up with the thread. Still processing all your advice about boundaries. One comment about language skills was interesting. DC has expressive skills that are above receptive skills in ways. NHS was too SALT basic and it was stopped. He definitely feels his feelings intensely, especially anxiety which he directs on me, but doesn’t seem to appreciate we all have feelings to manage not just him. The mornings are currently stressful for all of us getting off on time. Also we could never play board games etc as he would cheat to ensure he won or refused to play or got mad. It’s the point about learning to fail. He hasn’t and is avoidant but also he avoids us. Doesn’t want to talk to us and gets mad if we try offer guidance. We don’t revisit things that happened to learn from them as he gets angry. I think he’s almost learned to do this to deflect so he can avoid. It’s the RSD to a degree and ASC part of profile and being in control. It’s difficult to parent a child who’s as prickly as a porcupine. I was so exhausted yesterday I couldn’t post. My brain has had to compute so many different things that it just couldn’t process anything else. I was shattered.

@Fififizz DD2 has endometriosis and had adhesions on her bowel. As the consultant gastroenterologist put it, her transverse colon looked like the corkscrew rollercoaster at Alton Towers. Anyway, he put her on a low fibre diet, and said if she got constipated to take 16 Movicols, to do a “colonic cleanse”! We were all taken aback and her then bf is a GP!

I don’t know how verbal DS is, but one of the staff bought DD1 a “Worry Monster”, which comes with a journal for her to write down her feelings! She had extensive psychotherapy to teach her how to label her emotions, as a child - because she couldn’t do it all, and used to come home from school and just scream!

Anyway, she’s had two drop attacks in one day this week, and she cried to us non stop for 15 minutes last night on our video call, because she fell chest first onto the coil of a ring binder. We think, she may have cracked her sternum, so I’ve had to ask them to take her for an x ray. I don’t think she could express verbally difficulty with breathing?

@LathkillDale

Oh my. 16 Movicol sounds familiar. As I understand it endometriosis is tissue growing in abnormal places so not sure how that would help your DD tbh. We had an incident on hols and had to go to a GP there. He was incredulous at the Movicol advice and told me off. He couldn’t believe that was medical advice and nothing had been done more holistically. I gave up. It isn’t resolved but DC is close to adulthood so will need to find solutions that work for them.

DC is extremely verbal but there’s somehow a mismatch between that and understanding, processing and taking information on board. Plus a high degree of selectivity in what information is wanted to be received. A career in politics would suit some skills very well. DC didn’t make progress with SALT because he appeared to be flying verbally but obviously receives information and processes it differently. The NHS SALT wasn’t a help or good match for him unfortunately and I doubt he’d tolerate it now. Refused to engage with Clinical Psychologist after 2 sessions. I suspect because she challenged him. Queue RSD being triggered! It’s hard to make progress in teaching soft skills with all this going on plus masking socially and higher than average intelligence. DC is a paradox!

Oh gosh. That’s a lot for your poor DD and then to have further medical consequences as a result. It sounds very difficult for you all. I hope they can get DD x rayed and treatment as necessary. How very distressing all round. Sending lots of virtual hugs and honks your way. x

@LathkillDale I hope DD1’s pain eases soon and she hasn’t fractured her sternum.

@drspouse I hope you manage a quiet weekend.

Well done DD2 for her first week at college. A brilliant achievement. I’m glad DD3’s school is on the ball with friendship difficulties. Why can’t the school teach the BTEC over a year? Are they going to offer a different sports qualification instead?

@Fififizz there are lots of options other than movicol, has/would DS try anything else?

My DSs all have therapies, including SALT, in their EHCPs. The NHS doesn’t deliver any of it. They wouldn’t be able to.

@Fififizz As there were unnatural bends in DD2’s colon, caused by the adhesions pulling, food got held up, which caused loss of appetite, nausea, vomiting and constipation. (Multiple GPs put all the abdominal pain to “normal period pain” and the vomiting, etc to anxiety until I went and insisted she be referred to gynaecology for a laparoscopy, and her bf went and insisted she be referred to gastroenterology.)

While, she had a laparoscopy to remove as much endometriosis as possible at the time, surgery tends to cause more adhesions, so it’s only a temporary cure. As it was, the low fibre diet worked - she could eat croissants where we get told to eat wholemeal bread!

DD1 is also prescribed docusate and senna tablets every day. Could DS tolerate one of those. As she a genetic metabolic disorder, her ammonia is high and it’s a neurotoxin. Laxatives reduce the ammonia, but obviously they also prevent constipation. Her GPs are well on the ball about faecal impaction in people with LDs!

@roaringdragon
Sadly not. We gradually through stuff to extreme Movicol. I tried sneaking it in. Big mistake and loss of trust. Terrified of losing control, won’t go in certain places so that’s not helpful either. I have to just let their body be and hopefully when an adult might choose themselves to get treatment. Problem is it’s hard on the body but not much I can do.

As well as NHS SALT we had this delivered by school as well as Clinical P. DC was reassessed effectively after a term and as expressive language/vocab was at a high level was told all’s fine. The private SALT who provided the report we used for Tribunal said required specific support. Ditto same experience with Clin P tbh. The private SALT isn’t local and online sessions wouldn’t have worked. It better to source it yourself imo because even if EHCP is specific you have to ensure school are delivering!

@LathkillDale

Yes, we’ve had the high fibre advice then another dietician saying low fibre etc. Ah, I understand about the two issues. Often the NHS treats parts of the body separately not as one complete system.

@Fififizz online doesn’t work for DSs either.

We couldn’t afford to fund even a fraction of their provision even if we wanted to, so no option but to enforce their EHCPs.