The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

I have ASD and ADHD, but language was a core feature of my ASD as a child. I had difficulties with speech (the psychs concluded that I was growing up in a foreign country and trying to learn two languages at once). But my Mum said that I was pedantic as soon as I could talk. She asked me if I was fed up of being in the bath when I was very young and I said "No, I'm not fed up, I just want to get out now."

Ds struggles with pictures. His language is very very different to the norm in both how he acquired it and how he uses and receives it. Pictures with words underneath help carers use vocabulary consistently and remember his needs….. it’s our biggest hurdle. I don’t think I understand autism at all, but I understand ds and I know lots of autistic people.

Temp went down from 34c yesterday to 25C today and DS decided the end of the heatwave meant changing from wearing t-shirt and shorts to a fleece hoodie and shorts with hood down at least.

Did some gardening with DH and he got the rest of the plants planted whilst I cleared leaves for about 2.5 hours. The silkies were jumping on then kicking the leaves everywhere. DS didn't eat the cinnamon bun but did eat biscotti which I didn't think he would eat.

The three period lesson (Montessori) works particularly well for ds as he is severely language disordered. I use it to introduce all vocab before we get anywhere near actually doing a new task.

period 1-identify each thing and label with coloured stickers or dry markers or post its.(“ this is the temperature dial, it’s called that because you set the temperature in the oven with it and it’s a dial”)

period 2-get him to point to each thing I say the name of (we are usually talking through the task at this stage so “first you need to set the temperature with the temperature dial, can you remember where that is?”)

period 3-he names the different things as he describes the whole task from beginning to end.

ot sounds ridiculously formal but it really works for ds.

All great tips! DS does well with written lists but longer instructions are difficult.

DH uses written lists all the time, but he struggles with recipes, instructions (like what you are supposed to do with sun cream or how to play games) - he expects me to explain it to him!

Some great tips!

We had a walk that was still muggy and sweaty but we saw a stoat! It was a first for me and DD and we were so thrilled. In the spirit of summoning cooler weather we made a blackberry pie, I tried out some of the instructions tips and DD had a go at a lot more than stirring today!! Pub is great.

Did a car boot with DD today. Sold no clothes and quite a few of her toys, left all the excess clothes at a charity shop so it was productive! But they start so early, I had a cheeky nap when I got home.

DS met up with a friend from school who he's been talking about a lot. He's even compared him to his nursery friend which is high praise indeed! Apparently very successful but (of course) they live a long way away so we will try again for a weekend sometime.

Both DCs are enjoying the new typewriter and did some touch typing practice today, bit of sibling rivalry helping too as DS was dragging his feet and suddenly when DD wanted to he had to go first.

I’m impressed with all your DC’s cooking abilities.

A busy week ahead here. DS2 has his driving test, GCSE results on Thursday, hopefully we will hear from SENDIST, several appointments, a repeat 24hr CGM testing for DS3, I am meeting with the complex case transitions co-ordinator for DS1 and I need to get DS2 to do some more of the bridging work for sixth form.

Just did more gardening with DH for 2.5 hours just clearing leaves and watering the new plants with the silkies. Its cooler here now though still mid 20s and there is actually some rain forecast for later in the week. Also collected the days of the week socks and more t-shirts for DS and Waitrose food order and shampoo / conditioners for DS. Am watching American Experiment on Netflix, its very good about US political history.

Good luck for the GCSE results @inthequietofdawn and anyone else waiting.

Its strange having DH retired have to think about what we will do but nice problem to have and there's always lots of gardening here in BST especially with the heatwave. The silkies are so cute coming round with us but they have dug up the plant signs and quite a few bulbs and kick leaves everywhere, its like trying to garden with 3 toddlers. DS ate the blackberries.

I have been ill today, so DH cooked DD1’s dinner. I suggested fishfingers (really for DGC), mashed potatoes, broccoli and carrots, followed by a slice of apple pie. I don’t normally make desserts in the interests of low fat dieting, but this was for a party.

DH has been promoted to “best cook in the world!” even though I made the apple pie!

What is it about fishfingers? DGC consider me to be “the best cook in the world”, because I do them fishfingers! (We don’t eat them ourselves normally)

@LathkillDale I hope you feel better soon. Your fish finger tale reminds me of when my cousin came to stay. My DM offered her a sandwich for lunch (probably cheese - it was the the '80s). She grumpily said her DM gave her fish finger sandwiches and my DM harrumphed and said "In this house that's a main meal, not a lunch!"

@inthequietofdawn I hope the driving test goes well. Will he do it independently or will you/his instructor sit in the back? I sat in the back and I barely breathed.

DD1 had her MRI today. Fortunately I had phoned and suggested that they really did want us to come early because she's hard to cannulate, and they listened this time. Last time they refused to listen and almost had to cancel. It took 3 radiographers and 2 failed attempts before they managed to get a yellow cannula in the underside of her wrist so they could give the contrast.

We've got a few bits this week, too. DD1 is likely to have a duty psychiatrist follow up tomorrow. Phone call with the psychologist and double glazing repair on Tuesday, deliveries on Wednesday, results day on Thursday, psychologist for DD1 and driving lesson for DD2 on Friday. Plus having DM at various times so DF can go for his injections.

DMil is feeling quite lonely so we had her for dinner yesterday and today. It's difficult because DD2 feels very uncomfortable with her here, but I keep her out in the garden (we have a large table under a gazebo, so not as savage as it sounds!) so she will have to compromise a bit.

DD3 has been enjoying time with her school friend.

Thanks @Tulipandmagnolia.

@Lougle well done DD1 for managing the MRI and cannulation in a not so nice place. Good luck with the results.

DS2 will do the test independently. He isn’t anxious or wary around new people, Quite the opposite, sometimes too much.

Good luck for results Thursday.

@inthequietofdawn good luck for driving test.

Rain! We have had rain.

@TheGoodCat what is this thing 'rain' that you speak of?

We had no water last night. There was a small leak at the road that runs along the bottom of our estate this week, which residents reported. No action was forthcoming. Yesterday the small leak turned into a large flood with water pouring out of the mains. We're up a hill from the road so the water reduced to a trickle then stopped. The water company fixed it through the evening so we're hydrated again.

I've just read a story about a man who is claimed to be in a vegetative state. His mother has been banned from visiting him in the care home and is only allowed one video call per week. It was heartbreaking to read that she calls the Samaritans twice per day, every day. With the confidentiality of the court, the details can never be known, but I hope I'm never in that position.

Unless, there have been safeguarding problems, we don’t know about, I’d say it’s in breach of his human right to have a private family life.

I was invited to go to Westminster in 2022, to give a speech to MPs and peers on how the Covid regulations for care homes and hospitals were affecting DD1. I wasn’t the only one - although all the other carers there, were caring for an elderly relative. One elderly person had dementia herself. The stories were heartbreaking - the pettiness and cruelty by care home managers was breathtaking.

Ditto, when I was asked to be a witness in the Covid 19 enquiry Module 6 on care homes, by a firm of human rights lawyers. I had quite a few conversations with them on human rights and visitors to care homes. I heard the same stories of pettiness and cruelty at the Enquiry. One family was refused permission to spend time with their dying parent; but as soon as they were dead, the care home asked the family to disinfect the room within three days. They refused.

Impact witnesses like us couldn’t just put whatever we felt like in our witness statements - the lawyers repeated asked me, to supply evidence in writing to support my points such as emails, letters, newspaper articles, etc wherever possible. Some evidence obviously was hearsay.

It was also blatantly obvious that care homes don’t understand the law about human rights, best interests decisions, DOLs, videoing, etc either.

After all I heard, I would never assume the care home was being reasonable and the family carer wasn’t.

@Lougle that is so scary. I think it is very common for people with power to use it unfairly. I think we all need to be hyper vigilant to protect our children from others and to constantly be mindful of our own care. There’s a very fine line between support and control. It weighs on me.

One of the problems discussed around the time by charities for relatives and the Joint Parliamentary Committee for Human Rights, iirc was that, if families made a complaint about the care, the care home usually threw their loved one out. If they were publicly funded, the family could make a complaint to the Ombudsman; but self funders have nobody to complain to. The CQC often won’t deal with complaints either.

The system is a mess!

The BBC promised us a little bit of rain in the night but we don't think it happened. Temperature is down to 25C which is lovely and in theory we finally get rain later in the week.

We have cleaned downstairs including the downstairs bathroom and good to have that done. I am trying to persuade the council to send the bin lorry out again as they missed the whole street and another one but think its cars parked on yellow lines blocking the way and roadworks.

We have the plumber round today who also arranged our kitchen and he's servicing the boiler and quoting for a couple of things. DS has cooperated with us cleaning and the plumber.

So it's Monday afternoon. Results day is on Thursday and we've had no information from school. I've emailed the office and copied in their tutor. The office has an automatic reply to say they are back in on 7th September.

@LathkillDale I hope you are feeling better.

@Lougle the school’s lack of organisation and communication strikes again. Is that the case about FN and FHR that is going through the courts? It isn’t an isolated case, unfortunately. Earlier this year ITV ran a piece about contact restrictions with people being restricted or banned from seeing relatives with LD in care homes. Some where there had been CoP involvement and some not. Here it is. It highlights the importance of Deputyship where that applies and LPA where it doesn’t.

Thanks @TheGoodCat. DS2 passed.

It's been raining here, DD had a club today and asked for a lift, it's 15 mins walk.
I celebrated the change in weather by having a migraine. Think I've spent more time in bed than out of it in the last 48 hours.

It does strike again!

Yes, that's the case. It's just devastating. I'll be glad when the documents come back from the OPG for DD1. I was a bit uncomfortable about the LPA but the psychologist talked to DD1 and documented that she felt she had capacity to make the decision. We would have gone for Deputyship if she had concluded she didn't have capacity.

The duty psychiatrist from Friday phoned today. He isn't duty today but the duty psychiatrist is the head of service and she felt it was better for him to follow up rather than introducing a third person. Her original psychiatrist is being asked to follow up on Tuesday, which is a bit tricky because she told DD1 that she wouldn't see her again.