The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

When I went out to the shed there was a pink fleece duvet in there with a cushion underneath and I assumed DS was there and started talking to it but then DH pointed out I was just talking to a pink duvet and he was right. 😂Now we are playing guess when she will come and what can we risk doing whilst also trying to keep an eye on DS to check he's not restocking the shed. Have managed to have a shower each and get lunch.

Our black bin and the whole streets wasn't collected this week presumably as a road is only partially open but that road is closed for 4 weeks so it might be 6 weeks inbetween black bins and we didn't get warning. The green / blue it'll be 4 weeks and as we have 2 of each that will be OK. I hope they will find a way to get through.

Oh @Lougle that is really hard.

@Lougle that’s really difficult and exhausting.

@LathkillDale the judgement mentions everything AD’s mother has done - the care, the seeking help, the advocating. It also covers the fact sometimes this isn’t enough to prevent these complex situations where there isn’t an easy answer. As the Judge succinctly puts “It demonstrates a parent confronting the painful reality that love alone cannot manage risks of the magnitude presented by this child.” AD’s mother had representation at the hearing separate from the representation for AD (or rather the Children’s Guardian for AD).

Planning lady has been and DS stayed out the way so she could take photos and was just a few minutes. She said it may be discussed at this months meeting or it maybe another month. In theory it should be the meeting this month but will see.

"DH pointed out I was just talking to a pink duvet and he was right." 🤣🤣

Thanks. The psychologist has pulled out the stops and we've had an online appointment with the duty psychiatrist, who was at pains to say that he was only dealing with the next two days and that useless psych would take over on Monday. We had a good chat about her history, although he hadn't been told that she has been treated for an ED, so he got a bit of a surprise when I said "oh she was like that when she was in hospital in 2021..."

Anyway, we're adjusting her meds and he's writing a letter to the GP which will also cover me against any suggestions that I have made changes without medical advice. I also made an entry in my Google Calender during the meeting deliberately for the date/timestamp.

"The central question remains the same as it has throughout these proceedings: how can this young person be kept safe whilst receiving meaningful therapeutic help?"

It seems to me that the real question is "What constitutes meaningful therapeutic help and who can give it?"

Does the help exist? Would it be available in the private sector, or another Trust, or does nobody actually know what they are doing? Is the fact that it isn't being given about resources, communication, or fear of worsening an already terrible situation?

@Lougle I hope adjusting the meds helps.

I imagine there have been private providers among the list of tried and failed placements.

I don’t think the Judge could answer the questions posed in your post without the ICB being party to proceedings.

I’m not sure there is consensus on what support should be provided. “It is one thing to say that AD's risks arise principally from neurodevelopmental and attachment-related difficulties. It is another to explain who is responsible for treating those difficulties, where such treatment will be provided, what therapeutic regime is proposed, what professional will deliver it and by what mechanism those interventions are to be sustained given AD's presentation.” (My bold.)

How you can answer the where, who, etc. questions without nailing down the what and needs behind that I don’t know.

Reading the judgement passing the buck is at least part of the problem. After commenting positively about the actions of the mother and LA, the judgement states “The same unfortunately cannot be said with confidence about the response of the wider State.” Later on, it states “Reading this material as a whole, one is left with the uncomfortable impression that mental health services have been rather more successful in explaining why they cannot help than in explaining how they will help.”

There does seem to be a lot of effort by providers (schools, therapists, tutors) saying why they can't help, e.g. the tutor who wouldn't take DS because of the type of school he's in, school saying he isn't engaging in speech therapy. You feel a sense of relief from them rather than a willingness to suggest an alternative or be flexible.

In other news, DS was desperate to make gingerbread men today but really struggled to follow the directions and I got quite frazzled and a bit shouty, I think I'm also struggling with things after my mum has died, baking was one of the things I did a lot as a child and it was obviously such a different experience than with DS.

(but he managed the rolling out and baking bit very well and they are very tasty).

Well done for doing it @drspouse . You're managing very well. We all get frazzled from time to time.

He's got into making smoothies recently and we find after a few goes he knows what to do. He makes his own bacon sandwiches without help now.

@drspouse try getting ChatGPT to rewrite the recipe for ds.

It's actually things like "what is a baking tray as opposed to a grill pan or a cooling rack" and "which knob turns the oven on rather than the timer" that he struggles with to be honest.

Could you put a red sticker on the knob that turns the oven on? You can also get coloured baking trays or ones with coloured handles. Anything that would make it different to everything else.

It happens all the time in our house! We have a black cat. We often find ourselves, talking to a black cardigan on the settee, as we think we’ve seen her, from the corner of our eye! This morning, I was talking to a black watering can, thinking it was her; because we have meals outside every day in this weather and she’s always hanging around at breakfast, in the hope of getting some cheese!

We also have a black cat AND BOTH DCS HAVE A BLACK CAT TEDDY THE SAME SIZE. I'm sure you can imagine.

@Lougle those are genius ideas.
He also occasionally thinks we mean washing machine when we say dishwasher (yes he does have word finding problems) and that might help with this confusion too.

I'm glad it helps. Removing the language can be so helpful.

What a lot of worries to field tonight. Local fires, Jason Ardey, derailed trains, hose pipe bans, food crops, mass migration, Clacton. My head is spinning.

@drspouse DS is a champion in my eyes any chance he could rustle up one of his bacon sandwiches for me in the morning.

haha! to chats with inanimate objects. I had a phase of talking to my furniture, knowing it was my furniture.

@drspouse a whiteboard pen and stickers are really helpful for washing machine type dial setting here. My ds finds colours and numbers much much easier to process so we use all that as a crutch when learning a skill. Mostly he just grows out of them and the stickers fall off and writing rubs away over time.

Can you take a series of photos, showing how to do a task at each stage, with a short sentence underneath on a large piece of card - like a close up of the washing machine knob at the setting for a 40 degrees wash, etc

DD1 used to get very stressed at a speech and language school, because every Tuesday, she had to change her duvet. Half the children probably had dyspraxia; but she really struggled with it. The OTs did her the series of photos, showing her doing each stage on a card. No more stress for DD1!

Where she lives now, they do a laminated card with simple sentences with symbols above, like a Social Story, explaining something simple to her - like we don’t steal other people’s possessions, just because we want one! They use Social Stories a lot with her.

It's so interesting how different we all are. I need words. Pictures are ok with words, but I get really stressed when I have instructions that are just pictures.

My guess is you use self talk to reason your way through a problem? I suspect most NT people do. DH and I both do, even though he has ADHD, he struggles with visual input (as in not being able to visualise from reading, or recognising people out of context)

Whereas, DD1 has profound verbal reasoning difficulties, so she may find the visual support better scaffolding for her?