Before I start, let me address the featured image that I think will be on this blog post. There used to be an option to set featured image and I was going to use the image above – a pic I took of York Minster behind trees with a Noir filter, as recommended by our dear friend Jan many years ago, applied. But the set featured image feature seems to have disappeared and now there’s an AI Assistant that seems to be the only option for setting a featured image that generated the hilariously awful image that made me laugh so much that I just had to keep it in. The fact that AI-me and AI-Fo have two glasses of wine each should probably make us have a good long, hard, look at ourselves.
As keen-eyed readers of this blog will have noticed over the years, I don’t generally sit down and write a whole post in one go. Rather, I write a bit here, take some notes there and sometimes jot down what sounded like a hilarious witticism to be inserted somewhere and then I attempt to pull it all together when I find a quiet moment. These attempts to pull it all together are not always wildly successful and I end up with some disjointed ramblings. I am afraid that this post will be even more disjointed than usual.
I have got not one but two perfect weekends to include (I’ll bullet point these). There’s a political rant – these are not always popular but this one is actually relevant to the main topic of the blog – Ava-Jane. A bit of woe-is-me sport stuff. Some woe-is-us tales of being failed by equipment. And finally some random thoughts about “lived experience” that probably doesn’t make much sense and I have put it at the end so it can be easily skipped. …oh darn, I have just realised that it’s World Down’s Syndrome Day today and I’ll need to say something about WDSD. I will need to include headings to try to make some sense of it all.
Most Recent Weekend
We’ve managed to engineer a weekend away, Fo and I together in York. We had a failed attempt to make it to York a couple of years ago due to a problem with the van. It took some logistics (or should that be Fogistics?) to get us here as we needed to find a weekend when we were both free and both Ava-Jane’s carers could each do a night on a weekend – so that’s four adults with commitments having to coordinate a weekend when we were all free. They are both people who we know well and know AJ very well and who we have utmost confidence in but they don’t generally do nights so it’s a big favour – much appreciated!
So, we made it and we have Jorviked the hell out of Jorvik, we:
- Have pretty much done the full circuit of the walls (staggered over a couple of days)
- Had a fancy six-course dinner with wines for every course
- Went to the Jorvik Viking Centre,
- With great serendipity, found out that our dear friends Amber and Rob were in York with Amber’s extended family, so we all watched the rugby in a pub
- Went to a Bach Mass in York Minster (I didn’t snooze even after a few pints watching the rugby)
- Have just had a kebab
- Watched half of Romeo + Juliet by Baz Luhrmann, which was very romantic. (Though, thinking about it, we haven’t watched the rest of it since we got home, which probably says something.)
Thoughts on Bach:
Great n’all but we were quite glad when it finished.
I can’t help but feel that part of the enthusiasm of the final applause was fuelled by an overwhelming feeling of relief that it was all over.
And the lyrics leave a bit to be desired. Kyrie Eleison is more repetitive than Hey Jude.
The perfect Saturday
I:
- Read the paper a bit
- Took the dog for a good long walk in the sun… finally, the sun!
- Had some farm action (prepping for imminent lambing)
- Attempted the Telegraph crossword (unfinished as usual, see image below if anyone can help with the remaining clues)
- Had a little dance in the sun with Ava-Jane to some top tunes (Alpha Blondy – ideal for when the sun comes out)
- Then went for a walk with AJ to see if we could find ducks on the lake (we couldn’t) and we had chat with old Mabel (horse)
- Watched two games of rugby with AJ and my old mate Andrew/Stan.
And on a wonderfully sunny March day! I am writing this at the point between the crossword (so actually it might not be unfinished)(it was, so embarrassingly unfinished that I have thrown it away and the rugby. If Scotland lose to Wales, the Saturday will have taken a turn away from being quite so perfect. Am I tempting fate? The chances of me completing the crossword are about as good as Scotland winning the Six Nations – theoretically possible still, I think but would need a quite ludicrous string of results to play out. But we should beat Wales who are not the team they once were, which is a shame generally as Wales and rugby are synonymous and it would be great if they rose once more… just not this afternoon thank you very much.
…some hours later…
Scotland did win, they went great guns to begin with and then nearly let it slip away, better than last weekend against England when they went great guns that turned out to be spiked and lost by a point. But to round off the day, there’s a Bob Dylan film on – No Direction Home by Martin Scorsese. I haven’t yet seen the new film, I am sure it’s pretty good but I am not massively into rock biopics and I would be quite chary about watching a Bob biopic, so I think I’ll wait to see it on the telly.
It’s funny that we see Generation Z as entitled and presumptuous, believing that they can dictate what path the artists they follow should take. These parasocial relationships, where fans think they know and own the stars they purport to love, seem to a very new thing. But the in this movie, you see how people in the mid-60s who felt very comfortable airing their views on how Bob should be playing his music.
We are living in very dark times indeed and I wouldn’t really presume to tell anyone how to live their lives but I do think that we do need to find these perfect Saturdays – even if they consist of little more that listening to some good music, hanging with friends and family and noticing some lovely things. All that and rugby and Bob Dylan. And Ava-Jane, of course.
Further sporting woes
I won’t go into how tragic it was that Atlético Madrid got eliminated from the Champions League by Real Madrid other than to say that it was really, really, really, really, tragic and I mean, really, really, really, tragic. And the most tragic thing of it all was that the match went to penalty deciders and our wonderful Alvarez slipped a little as he slotted in a peach of a penalty. But wait, what’s this, they check their video evidence because someone has seen something unseeable (most likely because Real Madrid bunged someone some cash – they are like that they are, that Real Madrid) and on multiple repeat viewing, magnified a thousand-fold maybe Alvarez had kicked the ball ever so slightly against his other foot as he slipped, so the goal was struck off and Real Madrid duly went through on a wave of ludicrous good fortune and a whiff of corruption, as they always do. But the worst of it is that within two days, the normally sluggish arbiters of the rules of football have come to a snap decision that that particular rule is quite obviously preposterous and from now on and for ever more if a player does scuff the ball against their other foot, the kick will not be struck off, instead it will be retaken – what a very sensible, wise decision but it’s a bit fucking late, isn’t it? It does not make up for the fact that Atletico got eliminated on that very rule that was so obviously preposterous. So in short, they have changed the rules because it was so evident that Atletico had been unfairly treated.
For what it’s worth Atletico are known as El Pupas – The Unlucky Ones and you can see why!
Failed by equipment
1) The great Nutricia pump scandal of 2025
We have been…
OMG, I have literally just sat down to write about how useless the new pump that we have been given is when the bastard pump started beeping again!!
…so as I was saying, we have been given a new pump for Ava-Jane. She has a gastric button and most of her sustenance is pumped into her through that. We had a perfectly good pump that everyone knew how to use, with excellent customer service but the powers that be, in their wisdom, have decided that we have to have a new type of pump supplied by an entirely new company. And this new pump is crap. We give Ava-Jane a good drink of water, through the pump, overnight, to make sure that she is well hydrated. For some reason, the new pump cannot handle this slow release session and gives up at random times through the night. So, we haven’t had a good night’s sleep for a couple of weeks, barring the nights in York.
…oh, for FFS! I just went to check on AJ and her sodding pump was beeping again. I thought I had reset it after the incident above but obviously not. So I have raided the dwindling stocks of the tubes for her old pump and used that. I feel like a survivor in a post-apocalyptic movie, working their way through their finite resources. Hmmm, maybe this is not the moment to go into the dread I feel at what would happen to Ava-Jane if society collapsed but ask yourselves if you have seen any of those many movies that depict some sort of societal failure zombies / natural disasters / alien invasions, how long would Ava-Jane last?
2) AJ sent home because of a faded label
Fo got called to school the other day to get Ava-Jane because her sling was faulty. She needs to have a sling in order to be hoisted and, quite rightly, the school is careful to make sure that any equipment that their children need is in serviceable condition and they need to err on the side of caution. The sling was old and a little tatty and it did have a faded label but it was still perfectly sturdy but the school had to follow the guidelines so Fo, duly had to come and get her. This threw Fo’s day completely out of kilter and we didn’t know how long she would have to be home until they got us a new sling. As it turned out, we got two the very next day. Nice!
Labour Disability Policy
To paraphrase the famous poem:
First they came for the freezing Grannies and I said nothing
Then they came for the farmers and I said nothing
But now they are coming for my people and, well, I will take them down right here and now on my rather obscure blog!
I don’t fully understand what Labour are doing round the new funding rules for people with disabilities. Like a lot of their policies it seems to be that they have been trying to tackle something that is a problem but they are doing it in a cack-handed way and if their implementation is cack-handed, their communications are atrocious.
They are trying to make out that on one hand they are saving money, while on the other, they are helping young, sick and/or disabled back into fulfilling work. But basically, you are either saving money or you are helping young and/or disabled back into fulfilling work. You can’t really be doing both at the same time. Genuinely helping people who struggle to work for a variety of reasons: mental health, physical disabilities or lingering illnesses like long Covid, need serious programmes of support and these are costly. If you want to save money, you can start limiting funding for care, which is what they seem to be doing.
They are also putting age limits on when you can start receiving certain support packages and the younger you are, the less you will get. So young people are, once again, being penalised.
We are just about to hit the fifth anniversary of the first Covid lockdown. It’s easy for us to remember because it was on the day of Otto’s 14th birthday. The young people of that time sacrificed so much in order to protect their elders – Covid didn’t really affect them very much but they had their whole adolescence and key formative education disrupted so that the virus did not reach their parents and grandparents, who were at much greater risk.
But we seem to be doing so little to show them thanks – they seem to be getting hit again and again. University education is getting progressively worse, they are priced out of being able to put a roof over their heads, and the internet that they get, what seemed so full of promise when it appeared in our lives, is a toxic cesspit.
I think that I need to do a bit of research and work out what these new policies really look like and how they might affect Ava-Jane. I will then do a post about this.
World Down’s Syndrome Day
I like to do something about WDSD as it’s a lovely day for families of people with DS, where we all become visible. I am a member of a Facegroup called Dull Men’s Club, where people post competitively dull things but today someone posted about WDSD, so I could then post a picture of my odd socks, fortunately they were odd but also fairly dull. We wear odd socks on the 21st of March, or 21/3, or 3/21 (whichever floats your boat, but of course going month/day/year is the sort of thing only a country that would elect Donal Trump twice would do) because Down’s Syndrome (OK is we are doing Americanisms) / Down Syndrome (Americans have dropped the apostrophe S for complicated reasons, which are, however, less ludicrous than doing month/day/year or electing Donald Trump twice) is cause by having 3 copies of the 21st Syndrome 3/21, geddit?
Blimey, I hope that you could make sense of the above sentence – I certainly couldn’t… too many brackets/parentheses!!
Lived Experience
Oh God What Now Podcast were talking about this. Essentially it seems that oppressed minorities have a lived experience that many of us would not understand. And I would entirely agree. After all I am a 55 year-old white bloke who went to a posh public school. But before I was a 55 year-old white bloke who went to a posh public school, I was a 35 year-old white bloke who went to a posh public school and had a kid with quite severe disabilities who then went on to develop very severe disabilities. But the funny thing is that even when I was a 17 year-old white bloke who went to a posh public school and really had very little lived experience to shape my political outlook. I would have very much of the opinion that people like Ava-Jane should be given the utmost respect like any oppressed minority. So my “lived experience” of being a privileged, able-bodied kid, did not really shape my world view – I was pretty woke well before I became the father of a disabled kid and lived my experience. Interestingly this is somewhat different to my brother who obviously had a very similar lived experience to me but, and I hope he doesn’t mind me saying this, was somewhat religiously homophobic but then had two gay children and then became of powerful and heroic advocate for LGBTQ rights within his Christian community – his lived experience really did shape his worldview.
I don’t generally drag unsuspecting family members into this blog, so I thought I should run the above comments past my brother, and he said, in his words, “his lived experience and reflection on the non-judgemental love that Jesus talks about in the Bible led him to be an advocate…etc”
“Poetry shall flow forth,” this is what I said to Fo. I just went upstairs to get my writing cardigan. It’s a big long cardigan with a hood, that makes me feel like a wizard and that I like to wear if I am pattering away at the keyboard. But I did need to add that “Poetry shall probably not be very well punctuated and be littered with typos.” So I am wearing by writing cardigan and having a glass of wine, I do hope that you will forgive me that I am feeling more poetic than editorial and avert your eyes from any howlers on the errata front.
Ava-Jane’s seizures come in clusters. She can have a few weeks seizure free and then have a few days when she has quite frequent seizures. It’s quite easy to know when Ava-Jane is going to have a the seizure period, it is pretty much exactly just after you think or mention, “Ooh, how nice, Ava-Jane hasn’t had a seizure for a while”… that’s when she’ll have a seizure.
Misliterature 