The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

Good news about hydrotherapy @Lougle

So sorry about your DS @drspouse

Sorry about needing to give notice @inthequietofdawn

Hope you can get through things whilst DH is home @TheGoodCat I am loving it as we can get through so much together and have days out whenever.

We have just done 3.5 hours cleaning the kitchen including floor then the gardening clearing leaves, tidying plants, cleaning the house windows outside and the silkies cottage and being with the silkies who were singing. It's beautiful weather here and lovely to be in the garden. DS took a bath. He accidentally let the cat out yesterday again late in the evening and could hear the cat by our back door making sad noises to come in then he rushed to his food bowl. I think DS is opening window in downstairs bathroom and cat goes out then is like what do I do now and where is my food and asks to come back in. At least the silkies weren't out. DD is back home in a few days. Not heard a reply from new shed roof man so wonder if he's not interested but we need to wait for tree and possibly planning anyway so will give him a bit longer.

@inthequietofdawn how long will you wait to hear about DS1's tribunal? I bet the school are holding their breath too.

DD1 was distraught yesterday about 'having no place in life' because DD3 passed her driving test. DD2 thinks she has burnt out again.

DH has two weeks of annual leave so I'm very grateful.

DS was supposed to have heard, if his appeal had been accepted by the tribunal by July 23rd. He’s been told, he will get an answer on August 25th.

That gives so little time to be organised.

@Lougle SENDIST is swamped. Decisions are taking a long time at the moment. It could be a couple more weeks yet or longer before we receive the judgement. Some are waiting more than 20 working days. The HT has been a brilliant support. I know how much courage it must have taken to stand up to the LA like that, knowing that it would damage the relationship and there may be repercussions.

I think @LathkillDale is talking about registration, which is taking a very long time. It has been 6-8 weeks or even slightly more for a while now. A far cry from 10 working days. So there will still be plenty of time to work on the case.

It must be difficult for DD1 to have enough understanding to know she has difficulties others don’t and know she is older yet see younger siblings do things she can’t, especially when she has the uncertainty around placement and next steps.

It's torturous @inthequietofdawn . She's desperate for friendship and interactions. She is very intense at the moment and it's hard moment to moment, but she does still make me laugh. She asked what the plans were for this week and when I said 'psychiatrist' she muttered to herself "Oh Lord, I hate that woman. She's so fake around me..." There are no flies on her. I, of course, kept my responses very neutral because I'm also not silly.

I do wonder if her LD isn't as severe as it seems and that it is in fact a collision of a milder LD and severe ADHD. She says some really profound things. The psychologist asked some gentle questions in conversation as they were signing LPA documents. She asked DD1 if she wanted Mum and Dad to help her ('Yes, I definitely need it"), and if she would want Mum and Dad to stop helping her ("No, never, I'll always need it"). Then she asked if she would want Nanny and Grandad to help her if we couldn't and she said "No, they have their own stuff, especially Nanny because she needs lots of help. I don't want to be rude but in fact, I think I'm right in saying that saying no to them helping me would be doing them a favour and being kind because they have a lot going on."

I don’t really understand LD at all @Lougle unravelling where the actual deficit is seems impossible.

ds had another seizure yesterday, but on good form this evening. I have a long day tomorrow, so I’m praying he’s back on track.

@Wellzizizbetter I’m sorry DS had another seizure today.

@Lougle DD1 has that psychiatrist all figured out. What great insight from DD1. I know she doesn’t always have the understanding to match, but I am amazed by how verbal she sometimes is. I find spiky profiles intriguing and baffling at the same time. It amazes me.

Good your DH has 2 weeks leave @Lougle. Sorry about DD1, its hard when younger siblings are overtaking and there's no clear placement.

Sorry about the seizure @Wellzizizbetter

Did about 4.5 hours of cleaning house and doing garden with DH and we got a lot done but shattered now. DH made a lovely Sunday roast with cauli cheese so we had that and just having dinner now. No prizes for who finished the cookie dough ice cream and took a bath whilst we gardened. DH will get more ice cream, luckily the shop is right by our house. I hoovered all upstairs, cleaned upstairs bathroom, cleaned kitchen walls and floor, cleaned entrance hall floor and walls and then picked up leaves in the garden and cleaned the outside windows of the kitchen, entrance hall and living room. DH hoovered living room, dining room and stairs and planted the plants we bought at the plant nursery and the silkies were out with us singing. DH also put filler in the kitchen ceiling where there was one crack from before and we will paint soon hopefully.

Heard from the replacement shed roof guy, which had been worried by the lack of response and says he's been on holiday and will respond soon.

Very pretty @Tulipandmagnolia !

@Wellzizizbetter sorry that DS had another seizure but glad he's on good form today. He's a trouper.

Yes, the LD/insight thing is completely baffling at times. I was trying to set up a payment bracelet for DD1 today, and to do so I had to use an app that required a video confirmation of ID. Scan the passport, then take a video of your face, looking directly at the camera and turning your head left and right. Simple, right? It took us 30 minutes because DD1 just couldn't do it. She turned her eyes but not her head, then she tilted her head diagonally, then she somehow moved her head out of the frame....she ended up yelling 'I can't do this and I don't get it!!' I demonstrated several times and she still couldn't grasp it. In the end we managed to get it done but it's so interesting that some parts of her brain work well and others...don't.

Similarly, showering. If I leave her to it, she washes one leg repeatedly and nothing else. Today I managed to get her to wash the rest of her but she seemed completely surprised when I said that as she'd washed her whole body, her whole body needed to be rinsed.

Tonight, she went to bed. Then about 20 minutes later, she suddenly appeared on the stairs and said 'I've got a fun fact for you. There are over 7500 varieties of apples. I didn't know that, but I researched it on Google. I'm going to do more research tomorrow because I'm going to bed now.'

Another really cute but bizarre thing is that since we went out with DF and someone referred to him as 'Sir', DD1 has started saying 'thank you, sir' as she leaves places, or 'excuse me, sir' when she asks a question.

@Lougle that’s brilliant. Although a relief you weren’t treated to a run down of all the varieties. Have you considered visual processing disorder and Cerebral visual impairment?

I hate things that need a photograph of me looking at the camera. It takes multiple frustrating attempts because I think I am looking at the camera yet it is rejected for not looking at the camera. I haven’t worked out why.

It would make sense. I suppose the difficulty is whether it's a standalone condition or a feature of her brain malformation/ASD/ADHD.

@Lougle That’s so spooky. Left to her own devices, DD1 repeatedly washes her left thigh and nothing else in the bath. I have to tell her to stop, and prompt her to wash and rinse the rest of her!

Wow, that's really interesting. I wonder why? I wish I knew what DD1's 'condition' is. People misunderstand when I say that it would be easier if she had, say, Downs Syndrome. I'm not saying that life raising a child with DS is easier, just that having an identified condition that I could research and understand would be so much easier.

DS starts all his writing half way across the page and ignores the left side of the page. He is left handed and has dyspraxia but I think it's related to his ADHD - there is a post-stroke disorder called unilateral neglect where people ignore the left side of space, and it's attention related.
He's pretty good at things like copying block patterns but I'd be interested @Lougle how your DD1 is at that sort of thing.

https://napacentre.co.uk/crossing-the-midline/

These exercises might be helpful @drspouse . DD1 often starts writing far in from the edge, but seems to draw in the corner, so I'm not sure.

Actually that's partly true of DS too - he sometimes draws over to the left.
I'm pretty much sure that "crossing the midline" as an exercise is about 50 years out of date but we do try to remind him to start at the left, though you generally have to be sitting with him while he's writing.

DS1 has input from a QTVI and QHS, part of their input is related to some of the difficulties you are all describing. Despite this, my LA likes to claim DS does not have a VI because he doesn’t have something that falls under their very narrow stereotypical view of what a VI is.

DS1 struggles with crossing the midline. I’m not sure what you mean by out of date by 50 years @drspouse. It is still very much highlighted and supported by a range of professionals. For DS1, it has been covered by a specialist NHS consultant neurologist, physios, OTs, QTVIs and QHS, and it is related to his CP and VI.

Dd3 “forgot” her left side after our first round of epilepsy. She had to learn to crawl walk hold things etc etc again. Luckily she was still tiny so regained most things.

Ds1 sounds more like a one leggy washer in that most of what you are describing is familiar. I’m considering a variety of homemade solutions. Something like a counter for each step that you move from one bowl/place to another once done, or if that doesn’t work I may consider dismembering a Barbie so an actual leg is transferred from dirty to soap to rinsed. The new “shower spaah” gizmo has provided enough novelty to get us both reengaged with the quest towards independent showering (or more importantly for me MORE showering!).
I’ve been really worried that ds was going to have a seizure or was seriously depressed for the last two hours. It turns out the internet is down and he hasn’t been able to watch cartoons!!! I must remember that the feedback from that little (large) person is entirely his own take on things and not necessarily sensible in any way at all.

DD1 has a severe visual processing disorder and severe problems with visual motor integration. She’s on the first percentile on every test OTs do for dyspraxia and visual processing. Basically, she has a severe information processing disorder.

However, despite problems with auditory, visual and sensory processing, she loves vestibular input like swings, rollercoasters, etc; and increases her proprio-receptive input by rubbing her thighs.

Bit chaotic here. Shattered from yesterday and cat was hyper in the night. Then DH decides to go out (32C today) to see if he can solve the issue with his classic car which is due to heat, not a sensible time to do it but fine. Then as its hot we have let the silkies out once sunrise was over and safeish from sparrowhawk. I hear the silkies being loud and think what is happening, look out and DS is out wandering the garden so safe from the bird but he's looking at them concerned. One minute later I notice cat is in garden too so DS has let him out, looks like possibly deliberately. Thankfully cat is ignoring silkies and 2 out them go back to coop. Call DH and luckily he is 1 minute away so he comes back and retrives cat but DH's gone out again. Cat is now why can't I play with the chickens and DS and miss DH. I just want to sleep but am playing with a hyper cat. DH and I have told DS but not sure he will take notice. Luckily cat stays in garden at least and only goes a few metres from door. At least DD will be here when DH is away.

I can't find any journal articles either an RCT or a systematic review that's recent and from reputable medical systems that talks about therapy for this. All I can find is descriptions of physiotherapists and OTs liking it - which is not the same at all as there being any evidence it works.

Not all the research is from 50 years ago.

I think you have quite a narrow view of what therapy, and wider support, is in relation to this.

I looked at things since 2020, which proved efficacy (not just liking the therapy) and couldn't find any. If you have any, throw it my way!

@Wellzizizbetter DS is a wet weekend at the moment due to restrictions on screen time. From experience he will get over it!

Right, so not 50 years. I don’t have studies to hand. Although I have previously discussed research around it with a specialist NHS neurologist and a well regarded (by other professionals, courts and parents) QTVI. Neither were dismissive about it not being ‘a thing’. Although support doesn’t mean cure/get rid of.