The Goose & Carrot Pub

[RedRegular]

A thread for all who have DC with SN. The thread is deleted in 90 days and doesn’t show in active. The season is changing and the bar is well stocked.

@Lougle I’ve told college that he’s too ill to attend, because he is. He had a seizure last time he got wound up at school and if behaviour IS communication then he’s clearly communicating that the present set up is too much.
@drspouse I don’t think they can provide more than we can. It obviously costs money and time. Their offering is inferior and unreliable. So it has always been the case of juggling ds’s needs with my own and my families.

I don't know if it's being recorded as a formal reassessment of needs, tbh, @scoopofmintchocchipicecream . All I know is that I stamped my feet and said that I wanted her reassessed, the LA commissioned EP, OT and SALT reports, the psychologist has sent in a report, and the EP told me that they had originally been asked for a 'record of contact' but then that had been upgraded to a K5.

I agree with you on that. The way I see it, I have to know that when I'm old and in my latter days, if I get there, I'll have nothing but time to reflect on my life. I have to do whatever I do with the hope that at that time, I'll know I did everything I could for my girls.

Sometimes that means fighting for a provision, sometimes it means fighting with a provision, and sometimes that means saying 'Not on my watch', when a provision tells you they're giving you the moon on a stick because your child is allowed to breathe the air that they inhabit.

You may have small regrets about how long you've allowed the college to promise and not deliver, but I'm convinced that overall, you'll have no regrets about the sheer effort and determination you've put in to making sure DS given every opportunity to thrive. This horrible situation is just a step in the process.

DD1 decided that she would do the writing with the psychologist today. She painstakingly copied the words the psychologist wrote. It was very laborious and she was very anxious.

The psychologist has started chatting to me for 5 minutes once I've loaded DD1 in the car and she said that it's obvious from looking at her effort in writing that she has LD, and that the main issue for DD1 is that her needs have been chronically underestimated for years.

I could have cried because I have been telling people something isn't right since she was a few weeks old and at so many points over the years, even once she was in special school, I've been dismissed and she has been compared to, well, any kid they could find, to tell me that she's not that bad.

She's been failed by the system, but I've done my best.

@Lougle the description of your days is awesome inspiring. We all do what we think is right on the day. Most of us make mistakes and have to reassess and find our centre again.

Day 2 of meds increase started with tears but we did our two activities and though exhausted things are calm. I spent a ridiculous amount of time pruning my grapevine and then mowing the lawn. I’m looking forward to a really “outside” weekend.

I had to spend all afternoon, filling in the ICB’s form on the 12 domains for The Decision Support Tool, for the ICB’s annual review of DD1’s NHS CHC funding. The nurse assessor rang me half way through the afternoon to discuss the annual review, we missed on Wednesday (because we felt too exhausted to drive 7 hours there and back). TBH, we are suffering a bit of brain fog and I was worried about us making mistakes, while driving there on the motorways.

Talking about educational trauma, the placement’s then clinical psychologist told me, they’d see LAs turning down parents’ requests for funding students at their FE college. Then the parents had to apply again a year later, by which time the student was suffering lower self esteem and more mental health problems, because of a sub optimal placement at a mainstream FE college.

@BlueandWhitePorcelain see this makes me cross. From your description, there is no way your DD could go anywhere else, and no way she wouldn't qualify for CHC, so why are you having to do an annual review?

@BlueandWhitePorcelain the admin is never-ending, isn’t it? A relief when the review goes well. I hope you and DH improve soon.

@Lougle it sounds like productive if difficult session with the psychologist. This is the side people who resent the cost of SEN provision never realise. That the cost of unmet needs is high. Not just for the individual. Not just for their family. But for the state too. No one could have asked more from you. You and DD have been failed. Repeatedly. By multiple professionals who should have helped.

I would check if it is a reassessment of needs. A reassessment of needs is governed by statutory timescales and follows a specific process. Whereas, ‘just’ getting updated advice and information means the LA doesn’t have to follow any timescales and may not do anything with it e.g. they don’t have to then hold an early review.

CHC funding is a bit like EHCPs, there has to be a review at 3 months and then at least every 12 months. In most cases, it isn’t about reassessing eligibility.

@Zeonlywayisup everything is done by you or us for the respective goslings. Fly goose get outside. The shitty formula of provision -fight = blankety blank can be put on hold. If keeping the EHCP rolling in the back ground for when DS is well and ready is viable tick it over until he is. If it’s not you are outside.

@Lougle ‘done my best’ is such a vanilla phrase for you, as you are magnificent.

I had an unexpected visit from the son of my old RL goose that died. He is 68 now and is navigating his younger brother (65) from the residential that he has been in for over 40 years to a dementia specialist place. A 68 year old gosling that is not only doing hard life but was full of news of playing music, pets, travel, many, many interests. He has a best friend of 30 years and they plan to meet for the first time (different countries). Made my week.

Lovely to hear sone joy from a challenging life @RedRegular from your visitor.

@Lougle your love and determination shine through in every single post about your DDs we are all so much harder on ourselves than we are when seeing someone else struggle through this challenging world.

@BlueandWhitePorcelain the endless review cycle is very draining I hope your can get through this next cycle and the post Covid energy drain eases soon.

@Zeonlywayisup i hope you can “pause” the review cycle too. I hear you I often think why did I bother with the EHCP nightmare when all the progress that DD has made has been as a direct result of my energy & input it’s so draining. Big picture though I can see she does need some recognition for her struggles as they are very real even if largely hidden from most.

How’s the exams going @scoopofmintchocchipicecream ? Can you have a brief pause this week, I hope so.

hooe you can find a shed design @Tulipandmagnolia that is most cost effective & DD comes to visit with university on break.

DD loves the microphone set up that Amazon delivered yesterday so that’s going to keep her occupied this week which is fab. I hope she feels confident enough to share some of her work as the week goes on. It’s mostly been bedroom door shut yesterday as she didn’t want anyone to hear her singing.

@RedRegular what a great surprise! It's things like that which keep us going isn't it?

The microphone sounds like a really exciting new avenue for growth @FrostySunRun .

Thanks for the encouragement. I think I've got a bit bogged down. I've been looking at log cabins and suddenly (as my brain does) I'm plunged into U-values and R-values and the certain knowledge that we can't afford the best or even the mid-range and feeling doomed that I'm failing DD1. Then her psychologist is gushing about 'when you get the shed' which makes me feel that I should have achieved already!

Onwards and upwards.

Sounds like classic adhd brain paralysis especially when your tired and overwhelmed is when my analytical nd brain goes into overdrive yet can’t make a decision@Lougle yet any step forward is good as is equally pondering first. I’m sat here knowing o have to carry on painting our diy project but I’m so tired fed up of it. I call it the Treacle state I just need to get through it.

@Lougle - a lightbulb moment!

It is no mean feat to take on the SEN division (and possibly social services) of the LA, and the NHS with all the resources they have, against you and DH on your own. They are all just doing a job, whereas parents have to struggle with emotions like grief, despair, etc at the same time. You did your best, and you no doubt got DC more support than they would have got otherwise!

@RedRegular that’s lovely. I hope the heat isn’t causing DD too much trouble. The aircon is on here.

@Lougle do you know anyone with a gazebo you could borrow? That might work for some of the summer to buy you time to sort a shed.

@FrostySunRun great the microphone is a hit.

DS2&3’s exams are going well. DS1’s three are more mixed, but sitting them in the first place is a huge achievement. I hope the exams for others sitting them are going well.

@scoopofmintchocchipicecream it is a massive achievement to be taking exams. I always think it's fascinating when a young person struggles to verbalise but can communicate well in writing. One of the young boys at DD1's first special school was completely non-verbal but he had beautiful handwriting and he'd carry a whiteboard around so he could make his complaints. On one occasion he marched in and wrote "This school is going down hill". His complaint was that the love heart biscuits were now round biscuits 🤣 I knew another non-verbal young man who had a Hackney Black Cab worthy knowledge of roads and would tap the window to indicate when they should take a turn.

We do have a gazebo @scoopofmintchocchipicecream but actually the shed is sorted. We went to view an ex-display log cabin today and it's great. We got it half-price, so we've got the 44mm logs, thicker floor, double glazing, and rubber roof that I wanted for about £700 less than a brand new cabin with 28mm logs, thinner floor, felt roof, and single glazing. We've just got to hire a van and dismantle it on Monday.

There is the small matter of refitting the cladding of our small shed, moving the stuff from the existing larger shed, dismantling the shed, and laying a base. DH loves my spontaneity....

That’s a great buy @Lougle.

On one occasion he marched in and wrote "This school is going down hill". His complaint was that the love heart biscuits were now round biscuits

I love it! He had his priorities right. Tapping the window for turning is brilliant too.

Like you, I am fascinated by extreme spiky profiles. I find it intriguing how DS1 can have such profound difficulties in some areas and manage as well as he does in other areas. His scores range from a couple <0.1% up to one of 99.6%. It is amazing how that can be the same person.

DS1 managing to sit any exams makes everyone’s hard work to make it happen worthwhile. The EOTAS co-ordinator in particular spent a lot of energy making sure his and DS3’s exams and a whole host of exam access arrangements run smoothly.

Yes, DD2 had a 0.4th and a 99.6th. Of course, the SALT thought you could add together and divide by two to get a neat 'average' performance. If only life was that simple!

scoopofmintchocchipicecream glad that DSs2 and 3 exams are going well and it is a great achievement for DS 1 to be sitting some and I hope they go well.

There are spiky profiles (my two have them) and SPIKY profiles. The variety of human ability and experience is too much to try to fit into tick boxes and labels.

For some light relief- DD frequently has vivid and crazy dreams. Last night's involved an emu which had just hatched an egg in space. The mother emu lifted up the baby and examined its bottom then declared 'Yup you're Scottish'.

@NoHaudinMaWheest that made me smile.

@Lougle if only! It makes you wonder how some professionals managed to qualify.

Well done on the shed @Lougle

We went 2 hours north to view sheds today where they make them at a different company and was interesting to see and chat through options and be able to see them. Their one will be more like £6k plus planning and disposal of old shed and electrics so a lot cheaper than the other one which is £22.5k plus those. Same size pretty much - well the thatched one is 20cms deeper and 3 metres high rather than 2.5 metres. These ones also look like little houses and the one we are interested in has pressure treated wood and is lined. We can have a door with 9 glass panes and 2 windows at the front which open like a little house and the roof can be either cedar shingles or slate effect tiles. He says cedar shingles last 30 years unless you have big trees and we have 2 plus a shed roof squirrel and squirrels can knaw on cedar shingles. The slate effect tiles should last 50 years and are better with big trees and squirrels. If we go with them will go for their pressure treated wood one, they do lovely painted ones but not pressure treated and those won't last anything like as long. We can paint the pressure treated one after 3 to 6 months. We both prefer the thatch one but both like this one as well and its £16.5k cheaper and I can't understand why the price is that different - we've been told thatch over cedar is £2,000 more so £1,500 different on slate but there's still £15k difference. Its oak framed and painted inside.

We then drove another 1.5 hours north and went to RHS Harlow Carr and walked round the gardens and went to Betty's tea rooms for lunch and cakes. The thatched shed lady keeps messaging me. Cleaned downstairs bathroom when I got back and DS has made the worktop over the washing machine and drier come lose away from the wall - he stands on it to climb out the window and stands on the wash basin. We were changing it anyway so doesn't matter too much but does make me wonder which order we do things.

DH wants to now do bedroom first so have been working on that listed buildings consent.

I love that @NoHaudinMaWheest . Dreams are bizarre things, aren't they?

@Tulipandmagnolia that all sounds like steps in the right direction! I think we're probably in very different shed spheres in terms of budget and specification, but do check out companies carefully. For example, Garden Buildings Direct, BillyOh, and Project Timber are all brands owned by Kybotech Ltd, so essentially fronts for the same sheds, and there's a FB group with 400 people on it, all complaining and trying to get their money back.

The other thing is that a lot of companies big up their double glazed sheds, but 70% of heat is lost through walls, floors, and proves. Only 15% is lost through doors and windows. The blog I read said that unless you have 58mm+ logs, the Double glazing is just an unnecessary expense.

We've had a pretty exhausting and stressful day. We went and bought the shed, then on the way home I phoned DD3 and asked her to get migraine meds ready. She was reading a book and eating grapes, but wanted to make sure she did the job straight away. So she left her book and grapes to do the job, and DDog 2 the Sneakthief, as she will from now on be called, promptly ate the grapes. To DD3's credit, she called me straight away. I called our vets, who apologetically said that they were closing early today. So I had to call the emergency vet who charges £315 as you walk through the door. They made her vomit, which took an hour from start to finish, and took the bill up to £520. I'm very grateful for insurance, and they'll direct claim with Petplan.

Then DH was taking things to the tip and I was taking tyres to the bike shop for recycling. I misjudged the gap between the raised flower bed and DH's car and accidentally beached the car on the bank. It was a nightmare trying to free it. We had to dig away gently at the soil that was wedged under the edge of the car. It took ages and the passenger door seemed to stick a bit, but after a little bash with a rubber mallet it's all good again now.

Then, taking us back up the rollercoaster, I found an absolute bargain for the shed base. I figured that Ecobase grids would have been about £700. Concrete, I'd calculated, was going to be £400 if we self mixed it. We do have a whacker and concrete mixer. Then, I saw on Facebook a listing for Korean plastic pallets. They're 1.1m x 1.3m in size and 140mm thick. They're seriously heavy and I got enough for the shed base for....£90!!

I love a bargain. I reckon I get a bigger grin on my face when I've been thrifty than when someone goes on a spending spree and is surrounded by shiny new things.

The van turned out to be a nightmare. It seems that nobody in the van world is open on Saturday afternoons, Sundays, or bank holidays, except Southern Self Drive, who are completely aware of that fact and have gouged the market by charging top dollar. It's still cheaper than buying the other shed but irritating.