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.

I was about to reply, clicked post and got an error message. I presume the previous thread aged out.

Thanks Lougle, Z and V.

V I hope DH can facilitate you having time to look after yourself. The relentlessness of caring takes a toll physically and mentally.

Z if you have found the cure for shower dodging DC, let me know how. Three teen boys here who all hate washing. DS2 thinks merely standing under the running water is sufficient. DS1 sounds like he is being murdered when he gets in the bath.

Lougle they have. And DS has had some swabs taken from various areas, including a few different areas of skin, his buttons, throat/nose/ears. He has also had a cough swab and a sputum sample, X-rays of chest, abdomen, pelvis & legs, head CT, abdominal ultrasound, echo, LP, urine & stool samples, and a partial dental examination (should have done this when he was under GA for the CT and LP so it could have been a proper exam). He had cultures from his port taken as well as the peripheral ones he had, too.

Thanks at @ExistingonCoffee I was trying to post too. Not knowing is very difficult I hope you get answers soon.

Hedgehogs agree my sleep schedule is fine and Geese have confirmed excessive texts are normal - this is comforting.

I now have to wait 89 days before DrS revels that she is an international spy.

Thats enough to confuse any new lurkers/posters.

Thanks for new thread @ExistingonCoffee and hope they find a solution for your DS soon.

@ExistingonCoffee thanks for the new thread, that does sound comprehensive.

I chatted with the EP earlier and said that if I ended up with another A0 piece of paper that said DD1 was going to go to be a vet in America, I'd be quite unhappy. She seems to have understood. The psychologist has also written a joint email to the SALT, EP, and SW to give her overall view on DD1 and has asked them to contribute to a multidisciplinary team meeting that I didn't know was going to be happening. She's a good ally.

Thanks for opening up I’ll pop back later

Hi all! Good news here, my Aunty Flo came to visit so all is well! Up and down at school this week (mostly due to staff over reacting and not following pda friendly plan sigh) but teacher is on it. Not long till half term! Dry Jan is still going strong. I have to repeat bloods mid Feb so likely will stay off the wine totally until then. I smelt DH's glass the other night and it smelt horrible to me, so I'm not really missing it, more the idea of it I guess. Wolf Blass do a great 0%!
EHCP has been updated. DH phase transfer in Sept. Time goes so quickly.

Thanks @ExistingonCoffee - I have two water babies which is unfortunate when the bath is leaking into the dining room. DH has been patching up and running around with buckets and we've had a quote from a bathroom company. Next the ceiling

DD talked briefly to DH about the money, she wouldn't say why she took it except "it was for my tie". We've started using the Joon app which she loves so we've said she can earn her tie back on that. DS less convinced and also has fewer tasks to choose from because his bedroom is always tidy!

Lovely weather here today by Jan standards so DH had the afternoon off and we started doing the squirrels and hedgehogs path. I moved all the stones in place, cleared the leaves and cleaned all the downstairs floors as DS had brought mud in again though wasn't too bad by DSs standards. That took 3 hours 45 minutes and had a nice bath afterwards. Now having fish and chips which DS loves.

DS was also never interested in the jobs for cash but DD was very motivated by it. I used to worry about DDs spending but it actually helped motivate her to work and get promoted at work to get more money.

Thanks for the new thread @ExistingonCoffee.

We got so tantalisingly close to the finish line with DD's phase transfer, with every mainstream saying they can't meet needs, until today. Plot twist: a local (shit) mainstream is reopening with a new lick of paint after their (shit) Ofsted which highlighted their (shit) SEN support and persistent absence in SEN pupils. They will also have both a PRU and an ARP, and LA consulted their ARP. Their ARP has refused because wrong cohort but - entirely of their own volition and without anybody sodding well asking them - they have decided their mainstream can meet needs. I've had a phone call with them in which they got petulant, followed it up with a clearly worded email, and I'm hoping the LA won't take them seriously, but bloody hell why can nothing be simple.

I love the sound of the squirrels and hedgehogs path @Squirrelsandhedgehogs! Is that where you put the little holes through fences for the hedgehogs to pass through, or something else?

Sorry about the awful mainstream saying they can meet needs. DS had that issue.

The hedgehog and squirrel is a stepping stone path with these stepping stones - the ones with hedgehogs on and the ones with squirrels on. The path has been admired by our squirrel and our first path has been tested by our chickens and a pidgeon. https://kelkay.com/product/wildlife-stepping-stone-collection-bird/ if you flick through. The path goes to our bench with carved squirrels in and the shed.

Scouts tonight, DS doesn't usually go for the whole evening, but joined in the games nicely. Camp in a couple of weeks and we'd prepped DS for staying in with the other boys "no I don't want to, I won't go" so then the leader says he'll be in with me (suspect he got permission from group and it means they can take another boy!) and now DS wants to try the dorm!

@ExistingonCoffee how is DS1?

After chatting to the EP on the phone, and the email that the Clinical Psychologist sent her, she has emailed me to say she has been thinking about the best plan and wants to phone me on Tuesday, ahead of our meeting on Thursday, so that 'you can do a bit of prewarning'. I have no idea what that means!

We had something similar but different. Two specialist residential schools offered DD1 a place. One was a 44 week placement for £130,000 pa (44 weeks was at my request, as I couldn’t cope with all the school holidays). The other knocked £30,000 off the price and offered £98,000 pa for 38 weeks. The LA went for the cheaper option, saying they’d pay for respite care for DD1 in the holidays. (£4,000 per week at school one until she was 18, which did 52 week placements and then £? at school two, which did only 38 week placements, but also did respite for adults). School one then offered 52 weeks at £130,000 pa.

Luckily, DD’s consultants said it was totally inappropriate to expect her to cope with all these changes, and she needed a 52 week placement. LA tried to argue for their choice of school on efficient use of resources grounds; but the tribunal said only school one could meet her needs for consistency, medical care, etc and threw out the efficient use of resources argument as irrelevant. The LA ended up paying £185,000 pa for the 52 weeks - so they cost themselves an additional £220,000 over four years, plus the cost of the tribunal (not much), by not settling much earlier for school one at £130,000 pa!

We had her home every other weekend and about 8 weeks a year in the school holidays - which was what we could cope with, bearing in mind, we were dealing with DD2’s severe mental health problems as well, in and out of university.

Someone, who worked in a different department of the LA said, if we hadn’t gone to tribunal, we’d have got one week of respite a year!

DD2 was discharged from the mother and baby unit on Monday, as they couldn’t make her eat. Her fiancé was taking her breakfast and bringing her back to their house at 4 pm for four hours, unusually for someone sectioned, so he could cook her dinner. He couldn’t work. He felt he had to feed the baby. He’s had enough. Apparently, she believes the baby will be stillborn, and even if she’s born alive, she’ll die within 28 days. If she’s still alive at 28 days, DD2 will hand the baby over to him, and they’ll part their ways. She is also worried she can’t get a test for immunity to toxoplasmosis, with enough time for amniocentesis, before she runs out of time for a termination. She’s 34 weeks now! My guess is the baby is over 5lbs now, based on her last scan.

That's great DS did well at scouts @drspouse

Hope call goes OK on Tuesday @Lougle

Sorry @BlueandWhitePorcelain that sounds very difficult for all of you. I am glad she is eating at least. That's a good weight for 34 weeks.

Hoping to do more garden path tomorrow with DH. DS has started using the kitchen bin which is good but some of his food he is throwing away. He seems to be eating lots of fruit and his lunch fine every day and some veg / salady things but dinner its a bit more hit and miss. Like he threw a chicken kiev and pasta away then cooked himself the identical chicken kiev left in the pack. He threw out the fish and chips from the fish and chip van but ate all the Thai takeaway. We made homemade cottage pie last night and he ate all that. We know what food he likes though he doesn't communicate in any way what he wants. I think he's still OK on calories as he eats biscuits, cakes and cereals though is thin but always has been. Though at least he has stopped putting things down his toilet. It might just be as he can be a bit nocturnal its cold. Eating disorders were ruled out before and they thought he just threw away what he didn't want. He did go through a stage of throwing out chips and I think he was trying to improve his diet but loved fish and chips so we kept getting them once a month or so. Am not going to say anything as would prefer him to use kitchen bin and know what is being eaten and what is not.

He seems to be bathing a lot of nights now so that's good. I have changed the supermarket order to Waitrose as he seems to prefer their food, good job we aren't short of money. I have all his weird and wonderful fruit coming and a farm shop order but their fruit has gone to just apples so its mainly veg.

@BlueandWhitePorcelain I hope DD2 still receiving support in the community.

@RavenLaw sorry the school has thrown a spanner in the works. Just because school says they can meet needs, doesn’t mean they can. You will have a strong case if you have to appeal.

@Lougle I would wait to see what the EP wants you to pre-warn DD1 about. Pre warning can sometimes be helpful, but it can sometimes result in an inaccurate picture.

I have just replied to your PM. DS1 is quite unwell and is in ICU. I have swapped with DH for the night.

So sorry to hear that @ExistingonCoffee. Hope you're able to get some rest and that DS1 improves.

I love the stepping stones @Squirrelsandhedgehogs. And good that DS is bathing!

Glad Scouts went well @drspouse.

That sounds really unhelpful to leave a message like that @Lougle - almost worse than not getting the email at all!

@BlueandWhitePorcelain that sounds really difficult for all of you. Is DD2 entitled to s.117 aftercare?

Sorry to hear that @ExistingonCoffee Hope you can get some rest tonight and DS improves.

Thanks @RavenLaw

Hoping to do more path tomorrow. Getting Waitrose order for DS first and got farm shop order today though DS loves the fruit and there's only apples so got Waitrose one to give him lots of different fruit, steak pie and giant chicken Kiev. He's been eating well today.

Sorry to hear DS1 is so unwell, I hope you can get some rest too. @ExistingonCoffee and the night passes with some improvement for DS.

I hope DD can get some support @BlueandWhitePorcelain sounds like a very challenging situation with her being so unwell mentally.

The path stones are lovely @Squirrelsandhedgehogs, Our garden is now mostly mud bath we’ve just had so much rain in the last couple of weeks.

How are you doing @HedgehogsAgree ive not caught up with new apprentice yet hope to watch it tomorrow.

hopefully the pre meeting tues @Lougle will be helpful on Tuesday.

Scouts sounds positive @drspouse hopefully the camp sleeping will get sorted out.

really hope you can get the place you think is a best fit @RavenLaw

Im getting rather anxious the more I’ve seen online going through in the lords on this Childrens & Welfare bill. Particularly around parental rights for home education. Selfishly I’m hoping we will nearly be clear of CSA with DD2 by the time the comes law changes in but it’s really worrying the overstepping & draconian rights that could happen. I’ve very much stayed away from the news recently due to anxiety triggering but equally I do like to stay informed. Not helped by a constant run of menoP hot flushes disturbing my sleep every frigging night recently. Id so hoped I’d turned the corner on it by now but nope!

Existingoncoffee I am sorry too to hear how unwell Ds1 is. I hope this night is better.

lougle I hope the EP and the rest of the professionals can come up with a useful way forward for DD1. How are you doing yourself?

Blueandwhiteporcelain such a really difficult situation for you.

ravenlaw sorry that everything seems to have gone backwards just when you thought it was on the way to be sorted.

hedgehogs agree how are you? You have had so much extra to deal with recently.

Positive vibes to @ExistingonCoffee and @BlueandWhitePorcelain what a very worrying time for both of you and hope your children are getting the care they need.

@NoHaudinMaWheest thank you for asking. I'm finding it hard to remain compassionate and level headed, tbh. DD1 is very demanding at the moment and single-minded. Today, she asked for toasted bagel and eggs for lunch. I said she could have it but needed to wait a moment, as we walked through the door. I checked in with DD2 who wasn't feeling well, and turned around to find the water boiling (DD3 had told her what to do, then used the toilet) and DD1 slipping eggs into the water. She had no pan handle on the pan, no idea how long to boil them for, couldn't have taken them back out of the water (fine motor skills) but was absolutely not waiting for me. I get cross because I am then hostage to her plans. Reading that back sounds so trivial, but it's the intensity and demand, I think. She's on me from the moment she wakes, demanding to know when we are going to Nanny and Grandad's, pacing if she thinks I'm taking too long, waiting outside the door of the bathroom, etc., - it's quite claustrophobic.

I know just what you mean @Lougle. DS is not bad now but when younger he was just like this. He is also more clingy to DH. The impatience I get from both of them, too, it's overwhelming.

lougle It is no wonder you feel claustrophobic as that is a high level of demand. Your example isn't trivial because it is those small examples that all add up during the day (and the next one and the next one).

I feel a bit exasperated with my Dd sometimes and her demands are many notches below your Dd1's. (Though I have to hide it because she gets very upset if she picks up even a whiff of her 'being a nuisance'.)