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[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.

Lots to think about. Personal development has been put to one side during studying, which worries me but there is simply not enough energy between us. I feel asleep for 2 hours this afternoon!!! Rushed to find DD and she had also fallen asleep. Anyway both a lot brighter for the next leg of the assignment tonight.

@ExistingonCoffee thats good.

I had a workman over today to paint a damp course around the house. I had messages from him, that I slept through, so he just quietly left without knocking. What a man! I’ve had some great workmen that just get it.

hedgehogsagree DD has only really been able to work on adult living type tasks since she finished her degree. Doing both at once was just impossible.

It's definitely a long game, isn't it, @NoHaudinMaWheest .

DD1 has taken a dip. The psychologist has written to the psychiatrist to say that she needs to look at her meds again. The psychologist brought a goody bag of sensory toys with her today and DD1 just glanced inside and pushed it aside. She managed 2 hours of her 3 hours care session today.

DD3 is 17 tomorrow.

lougle happy birthday for DD3 tomorrow. I hope they can nip Dd1's dip in the bud.

@NoHaudinMaWheest i can perfectly understand why.

@Lougle do things feel a bit more responsive to a dip now? It feels like DD1 has a better structure around her. Have a lovely day celebrating tomorrow! Are you baking?

The psychologist is very in tune, and she is very aware of the shortcomings of the psychiatrist, so it feels safer.

Tomorrow is a bit tricky. Wider family dynamics...can explain on next meetup but not online, unfortunately. I am baking a sweet potato cake on DD3's request. Potatoes have just come out of the oven in readiness!

Hope DD3 has a lovely birthday @Lougle

Just done another 4 hours gardening with DH and got lots of turf down. Need to do 4th day of heavy gardening tasks tomorrow.

@Lougle Happy birthday to DD3. Good luck navigating the tricky family dynamics.

@HedgehogsAgree I hope your much needed sleep has left you feeling refreshed.

Two years ago, socially and emotionally, DS1 was functioning around the level of a 4-5y/o with some spikey elements. Since then, there has been some regression. I am just reading a report that has him at around 2y/o socially and emotionally. Difficult reading.

ExistingonCoffee that must be very difficult reading indeed. Do you think it is accurate?

I do. I think there are some spiky elements of his social and emotional development where he is functioning a bit above 2 and some below, but overall I think it is accurate.

@ExistingonCoffee I'm sorry, that is really hard. Was a regression expected? Are they trying to identify a reason, if not?

DD1 had a psychologist appointment today. The poor psychologist was trying to work through DD1's week with red, yellow, and green lists. DD1 got stuck in a loop saying 'Sally <the name I'll use for the unsuitable carer> bad. Sally red. No more Sally.' Then she got stuck in another loop saying 'No more psychiatrist. I don't trust that woman. Psychiatrist red. No more assessment.' The psychologist tried valiantly to promote the psychiatrist to the yellow list 'just for help with medicines', but DD1 was having none of it.

In the end the psychologist wrote the carer's name on a piece of paper and told DD1 to throw it away as hard as she could, and did the same with 'assessment'. DD1 seemed a little more satisfied.

So the psychologist has written to the psychiatrist to say that DD1 doesn't want to be part of the ADHD assessment, that she has plenty of information about her, and so we need to just continue without her and preferably on Teams so I don't have to get cover.

Thank goodness for that psychologist as she does seem to get DD.

DS didn't get the job. He was a close second. He doesn't seem too upset by it but it is hard to tell. He has had a physically demanding week at work so is very tired and it is hard to disentangle everything especially as his attitude is 'It is over I don't want to talk about it'.

I have developed rotator cuff pain, probably from stick use. Recovery time weeks or months - I am not quite sure how to manage that.

@NoHaudinMaWheest that's really disappointing. I'm sorry DS didn't quite get there.

Could you use an elbow crutch instead of a cane, for a while? It should change the weight distribution and relieve the pressure.

@NoHaudinMaWheest Oh no! I hope recovery is weeks rather than months. Sorry DS didn’t get the job. I hope it doesn’t knock his confidence.

@Lougle that psychologist is worth her weight in gold. One of those who ‘get it’.

We weren’t expecting the social and emotional regression, but the report wasn’t a shock. I knew there had been regression. DS1 is a bit of a mystery. He has had plenty of investigations that haven’t found a cause. He has had some difficult hospital admissions over the last few years, including a few admissions to critical care, which always set him back, but I don’t think they are the whole story.

It is part of a wider picture. His mobility and motor skills have deteriorated significantly as he has gotten older, which is to be expected in DC with his presentation. I think this is partially to blame for the regression in social and emotional skills, but again, not the whole story.

I have long thought there is a missing piece of the jigsaw.

@ExistingonCoffee the measure of our children against typical path is tricky to accept, but we do it. The measure against their own self is the hardest thing of all. Your DS1 has had a really difficult couple of years. What do you think is the missing part of the puzzle?

@NoHaudinMaWheest will he keep a job?

"I have long thought there is a missing piece of the jigsaw."

@ExistingonCoffee that is exactly like DD1. I don't think she's as complex as DS1 by quite a way, but she's still complex. In her CPA meeting I said that it would be hard enough if we were at the bottom of a mountain, looking up to the peak and thinking 'tough gig', but I feel like we're blindfolded, turning around and trying to find the path that leads to the mountain! Every time we think we might be making progress, we slip back. It's like Groundhog Day.

I think we're going to replace the shed at the back of the garden, insulate it and turn it in to a space for DD1 to do stuff with her carers. I did think about a pod but I'd have to get permission from the Council and it would be tricky to lift it into the garden. Whereas I think I can get away with replacing the existing shed without a fuss.

I'm quite anxious about DD2's WCA. On one hand, it's logical that she has LCWRA. I mean, even the supported internship wouldn't take her because they don't think she'll be able to cope. She can't take the taxi to school and has to be picked up by staff. She still needs help to decide whether she's hungry and what to eat, and support with personal care. She still needs to sleep after social interaction. She can't go out independently. She still gets panic attacks and needs propanolol to cope with going out to meet extended family. She still can't communicate when she's stressed. But what if they don't see it? She's intelligent and verbal. Regardless of their decision, she will have LCWRA, it will just cause us financial difficulty if they decide that she hasn't.

Is this on the Vineland? I think it's really out of date (and it wasn't standardised on British kids). DS does things that parents of peers say their DC don't do, and that are on the wishlist for Scouts to learn during their time in that section. So, age appropriate for the 21st century but he still came out as really delayed in self care etc.
He does have a few oddities that aren't captured (e.g. he often has to be told to go back and wash his hair after a bath!) but in general we're quite happy with his household skills.

ExistingonCoffee the things you know about are hard enough to deal with but to have such a large amount of uncertainty too is whole other ball game.

lougle crutch is a good idea. Dd has crutches that she almost never uses so I can experiment with them. I think I will try to get a private physio appointment to look at the overall picture as if stick use is causing or exacerbating the pain I need a long term management plan.
A space for DD1 and her carers sounds like a great idea.

hedgehogsagree yes Ds can carry on with his current job. Mostly he enjoys it but there are weeks like this one when there is a lot of physical work and he ends up in pain and completely exhausted.

@ExistingonCoffee Has DS1 had genetic testing? He could be like DD1, where for ten years, her consultants said they couldn’t understand why her epilepsy was so severe - then it turned out, she had a very rare genetic disorder as well.

Or could he have a chromosomal micro deletion or addition?

@Lougle that sounds like a very good plan for the shed.

Trying to feel your way around blindfolded is exactly it. If only we had an instruction booklet!

It would be a very blinkered assessor who didn’t see DD2’s needs. If the support group/LCWRA isn’t awarded, you should definitely appeal. And/or you could just apply for UC in September and go through the process again. As DD2 will be on a non-advanced course and it will be the September after her 19th birthday, you wouldn’t necessarily need to go down the credits only ESA route to establish LCWRA or wait to change course like you would need to if under 19 &/or on an advanced course.

@NoHaudinMaWheest do DD’s crutches have ergonomic handles? They are supposed to result in fewer shoulder problems.

@HedgehogsAgree I’m not sure. I wish I knew.

@BlueandWhitePorcelain we had genetic testing looking at the variants causing the genetic condition we know DSs have. Then we had Array CGH testing. After which DS1 was part of the 100,000 genome project. It didn’t show us anything we didn’t already know.

@drspouse it is accurate. It was a conclusion drawn from a range of testing, observations and discussions with people involved with DS1 rather than just based on one type of testing. His difficulties are beyond standardised testing, not being based on British people or differences in the 21st century.

Using the example of the daily living domain, specifically the personal subdomain, we still have to wash him, we brush his teeth, DS1 can’t dress himself, isn’t toilet trained (he has a button into his bladder to help with the urinary incontinence side of things), he rarely eats anything orally and 99% of his nutritional intake is via enteral feeds... It is similar for the community and domestic/household daily living subdomains. DS1 is reliant on care for all ADLs.

Your example about DS washing is more akin to DS2, who has to be prompted to wash properly because he thinks merely standing under running water is sufficient.

@BlueandWhitePorcelain it's great that you have an answer, at least. DD1 has been through all the standard FISH tests, karotyping, DDD study and 100,000 genomes and nothing has been found. The Baylor Institute thought they had found something and contacted the geneticist to ask for her file, but we heard nothing more.

@ExistingonCoffee that all sounds very comprehensive and tiring. I remember you saying you needed a cupboard or sideboard for his meds. I feel quite lucky that we only need an ice cream box! To be upgraded to a locked box soon though as he's likely to take paracetamol "independently".