Join us in the Goose and Carrot Pub thread.

[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.

@BlueandWhitePorcelain This link from Genomics England from yesterday says “As part of this study, babies have already received treatments for eye tumours and for SMA - a severe muscle condition, both before symptoms had even started.”

One of those with eye cancer is covered in this BBC article.

Thanks.

@BlueandWhitePorcelain thanks the menstrual cycle has a lot to answer for. I have always suspected there was more impact on DD than the obvious.

Beautiful sunshine here today.

If DD has epilepsy, she can have the Depo Provera injections every 10 or 9 weeks, because the AEDs cause the body to metabolise the hormones more quickly. In DD’s case, the drop attacks and tonic clonics increase in the few weeks leading up to the next injection, as the effects wear off.

@BlueandWhitePorcelain DD doesn’t have epilepsy but does take provera.

Seizures are so traumatic to witness. I can walk the walk and talk the talk but inside I just find it unbearable. @BlueandWhitePorcelain dd3 used to have storms of seizures. She’s one of the lucky ones that grew out of it. You sound very brave about it all (I am aware there is no choice really but having been there I do think it’s worth recognising you are coping with things so many never have to think about).

ds is white as a sheet but cheerful today and we are getting on with things. He helped me unload the dishwasher which he hasn’t done since college started being part of our lives. It was nice, and today he brought me my shoes to put on. It sounds so little but for that young man is real thoughtful kindness.

Maths tutor has explained more about entry level and confirmed DS is likely to do quite well so we're planning to ask school to be the exam centre. He needs a reader (which is fine, he likes that) and ideally a scribe but he writes fast and tends not to like help with that! Maths tutor can do both and is understanding.

@ZairWazAnOldLady good to read DS is cheerful today.

Maths tutor can do both

@drspouse have you and the tutor read JCQ’s regulations? 13.8 of JCQ’s ICE means “A private tutor cannot facilitate an access arrangement.”

I think he's used to an exam board that does allow tutors - school uses Pearsons so I'll get him to check. He'd be happy for his 1:1 to do it if not his tutor.

@drspouse Pearson Edexcel qualifications e.g. ELCs, GCSEs/IGCSEs, BTECs, etc. are still regulated by the JCQ.

The TA is more likely to be able to do it considering DS’s circumstances with the EHCP and in SS. Although you would need to be aware 13.7 of JCQ’s ICE means the person facilitating the EAA “must not normally be the candidate’s own subject teacher, Learning Support Assistant or teaching assistant. Where the candidate’s own subject teacher, Learning Support Assistant or teaching assistant is used, a separate invigilator must always be present.” So there would also need to be another separate invigilator.

A triumph! First time in 19 years and DD managed so well on her own with me being out for 90 minutes in the dark. So much preparation and big wobble as I left but she is feeling very good about herself now.

@ZairWazAnOldLady little love messages are so lifting.

We had that problem when ds was home schooled. It’s actually the main reason we engaged with college etc. Ds has had one exam where his teacher was allowed to facilitate but I think there was someone else as well. For ds working with new people is hard and it’s hard for them to understand him so it was the right thing. Of course now school have decided ds isn’t suitable for further academic study towards qualifications so it was all a bit pointless.

To be honest I just wish I knew who to call about it all. It’s hard enough to report an absence, let alone talk about his course.

@HedgehogsAgree wonderful. So DD should feel good.

@ZairWazAnOldLady it is certainly much harder when you EHE. JCQ’s rules seem to be getting tighter by the year.

DS1&3 both have home invigilation with a range of other EAA facilitated by one of DS1’s HLTA and DS3’s LSA, it wouldn’t work with someone who didn’t know them extremely well, but they also each have a separate invigilator from the centre who enter them for the exams. We gradually built a relationship with the people who would be providing the invigilation.

@ZairWazAnOldLady little things like kindness can be so big.

@HedgehogsAgree happy dances! What amazing progress!!

Tough day here. DD1 very dysregulated. LD nurse said she was going to talk to the psychiatrist and psychologist when we left her but I've heard nothing so I guess we just muddle through as usual.

DD2 was struggling with the return to school but pushed herself to go in for just one lesson, then managed to stay for 2 more.

DD3 is very upset because two staff members left suddenly and she's just found out.

We’ve had a local SS burnt and now totally unusable. Such a terrible loss. Security has been increased at ds’s college (which may not be related at all but came without warning). It all makes me uncomfortable .

That does sound difficult @ZairWazAnOldLady.

I think DS would cope with an invigilator as well as long as he could get to know them/they were on school staff. He knows most of school staff quite well.

@ZairWazAnOldLady i thought you meant financially burnt? It’s been burnt down? No wonder you are uncomfortable.

A really silly happy thing happened to me today. For context you have to understand that ds cannot abide music especially music I like and sing along to, or humming or singing in the car etc. It’s quite difficult because I can’t use headphones because then of course I can’t hear him and supervise properly. It’s been two decades. Well today totally by accident I discovered that if you close one ear you can hear yourself sing if you sing very quietly and no one else can hear over the car engine. 😆(I do understand this is a niche brilliance). I am now perfecting singing extremely quietly which is surprisingly challenging but GREAT. What a strange small freedom.

That's...niche! What skills we learn under duress. DD1 isn't quite as limiting as that but she has a very low tolerance for music that is not of her choosing and complains if the volume is high enough to hear clearly. I feel bad now, but she hit me and ranted at me in the car yesterday and I told her that I wasn't interested in her rage and I turned the volume up to drown out her ranting. It wasn't loud but the poor girl covered her ears. Not my finest hour.

I'm starting to realise that it doesn't matter how ill DD1 is, I'm on my own.

It’s funny, but DH (with ADHD and OCD undiagnosed, but as clear as the light of day, bearing in mind three other members of the family are diagnosed with ADHD/ASD, not counting DD1 with brain abnormalities) can’t abide music either. He says it’s a horrible noise to him. He can’t learn foreign languages either, because he can’t take in and reproduce the different pronunciations from English.

Yes you are on your own, but you are not alone. I think a lot can be gained by realising you are not a victim in all this. Your landscape and journey is very different to most but it’s yours. One life, one adventure for you. Find people who make you feel purposeful and confident in what you do well and support you when you can’t. This IS the Wild West we are living through. There are no guarantees but frankly @Lougle you (and many of our flock) are pretty impressive. You absolutely can make it through and you can help others too. Amazing.

In less positive news I am off to a meeting at college to smooth back to college for everyone. I haven’t done any of the jobs I had to get done post half term and it’s Thursday already!!!! Pray college isn’t too upsetting because I definitely do not have time to wobble this week.

honk honk

I think that advice is really useful for LD but she's ill @ZairWazAnOldLady . I shouldn't have to be coping with her mental illness on my own, and frankly, I do feel like a victim because it's killing me.

Sympathy from me. I was told stress over DDs was killing me, by a mental health professional. My GP prescribed me a mindfulness course before Christmas. Practically everyone there, seems to be on a GP social prescription, because of depression and/or the stress a relative causes them.

It might sound like a cliche, but can you get time away from caring from DC to do something like that? There’s quite a bit of talking to the others in small groups, and obviously the relaxation from the exercises. I feel much calmer the rest of the day, and sleep better.

@Lougle you shouldn’t have to manage on your own. You shouldn’t have to fight and chase. Professionals need to realise not supporting you is going to lead to carer burnout and a huge crisis for all 3 DDs.

@BlueandWhitePorcelain has DH considered APD?

@ZairWazAnOldLady the images of the school site looked like a devastating fire. Must be difficult for everyone affected. A relatively new build, too.

DS1 hates music. Any noise really. Ironic because for someone who can’t cope with noise, he makes an awful lot of it.

@Lougle I think all the goslings have a base line of difficulties that require a lot of sustained effort from us as parents/carers when that tips into really complex MH illness it’s no longer ok to be expected to cope and muddle through. You know DD1 has coped with life better than currently so think of that as where you are heading towards, things can get better. When in the pit of being stranded to care for DD alone when she was very ill we considered if an in-patient stay was the right care for her (quickly discovered that achieving that is not easy!) is that something you think might benefit DD1? Or is it a medication problem do you think?

I would start small and meaningful with your own MH a non-negotiable 10 minute coffee with earphones in and no thoughts of others allowed every day started me off. We would not expect a MHP to work all day shifts with no breaks and that is effectively what you are forced to be doing.