Respite

IMG_2258We have a new plan in place where Ava-Jane goes away for a night once every two weeks. Earlier in the year, social services had noticed that we were struggling a bit so suggested that we needed a bit of respite… So, that’s respite from Ava-Jane… from Ava-Jane! I have to admit that I find that hard to take. I imagine that a lot of parents reading this will be thinking “I wish I could have some respite from my children!” But in the case of Ava-Jane, I can’t help a little part of me feeling that I have failed.

How could we possibly need respite from the squidge?

[some time later]

So this blog post was going to be about what a marvellous child AJ is and how could we possibly not be able to cope with such an angel… but that was then, about an hour ago when I started making notes for this post. This is now, after supper and putting her to bed. And what a massive pain in the arse the little angel has been! We got a take-away curry and the only thing she would eat were the poppadoms. With AJ it’s not a case of her trying something and deciding she does not like it. If she has decided that she doesn’t want something, she’ll push it away, chuck it on the floor or, if you get it past her lips, spit it out. But she was fine for chocolate ice cream, oh yes. AJ gets a bit of a pass on the regulation from Pink Floyd’s the Wall “How can you have any pudding if you don’t eat your meat?” (ooh, the Wall, I will put that on now – that’s not a Shuffle Play album. Overblown concept albums really suffer in the days of Spotify and playlists). Also chocolate ice cream is the ideal vehicle for making sure that AJ has her meds. That and straight sugar! Otto is appearing in Mary Poppins, so we have sessions of singing “A spoonful of sugar helps the medicine go down” as we administer AJ’s various pills, capsules and liquids.

Then she started kicking up a massive fuss about something. For AJ it is very difficult to express what any given problem might be. She could be yelling because that last big spasm really knocked her out or it could be that she needs a massive poo. But we got there in the end and we got the “Bed, book, milk, Dada” ritual. I am doing a lot more of this as this is the longest stretch we have had without live-in support of some kind or another for years. The excellent Jess come for a few hours a day a couple of days a week but otherwise we are fending for ourselves. It’s lovely but we really aren’t getting out much!

So I suppose people will have been reading the above, thinking “Of course you bloody need a bit respite, take all you can get.” Which is, of course, true. And it’s not just us that needs it, AJ needs time away from us. She is nine years old and outside the school environment, she does not spend any time with children her age. She goes to a great place in Aylesbury that’s run by a lovely charity and is able to spend a bit of time with other kids. Quite what they get up to, I don’t know but AJ seems to report back happily.

And AJ is growing up whether I like it or not. We still have the after-bath cuddle where I sit her on my knee and wrap her up in the towel and cover every inch of her so only her nose is sticking out. She is very particular that every bit, every last toe is properly covered. But that’s kind of not what you do with a ten-year old, not least because it’s getting increasingly difficult, even with the biggest towel, to completely cover her – she is growing quite lanky. But she likes it and I certainly like it. That’s one of the advantages we have, we’ll be getting “those” cuddles for a lot longer than most parents.

So the respite is all part of the difficult process of watching AJ grow up and watching her needs evolve from what were essentially the needs of any infant to her becoming an adolescent with disabilities, which need to be managed within the wider society and not just in the comfort of our own home.

We also had AJ’s parents’ evening this week. I thought it was going to be one of the big ones where we meet with a panel of teachers, medics and therapists but this was just with Caroline, her teacher and Jo, one of the heads. And it was more like a “normal” parents’ evening, where we were discussing AJ’s schooling properly. Caroline is a very, very special person of great wisdom whose respect for the children with severe learning difficulties that she teachers is wonderful. She palpably adores AJ but takes absolutely no nonsense from her and has completely got her measure.

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She thinks that AJ’s range of vocabulary has expanded enormously recently but verbal communication is still based round two-word utterances. She is good at French (!!), interested in having a go at maths (counting, sorting) and sees no point in reading whatsoever. Apparently she has got issues focussing on the task at hand – the trouble with AJ is that it is hard to put your finger on why that might be. Is it the Down’s Syndrome? Is it the brain damage? Or more likely, is it because she is a Baxter? I have been tapping away at this while Otto “does” his homework – a painful process for all involved! I have been trying to find some time to do some educational stuff with AJ and we tried to have a push at reading at half term and I can confirm that getting her to stop mucking around and concentrate on what she is supposed to be doing is massively frustrating. And in the absence of my mother, I suppose I had better be the one to say “and just like their father too.”

So we’ll try to make the most of the respite and take it for the benefit it is. It should give Fo and I an evening that we can do something together or something with Otto.

I wanted to share this poem written by Henny Beaumont, someone I met on Facebook. She wrote a very powerful graphic memoir of bringing up a daughter with DS who had similar heart issues to AJ. Hole in the Heart – Bringing up Beth Amazon link

This poem is about filling in a personal independence plan and ascribing numbers to describe a person’s abilities.

The line “I am angrily grateful for the help I receive” seemed to sum up very well how I feel about the respite support we are receiving.

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Brexit!!!!!!

OK, so you have been warned. My blog posts are a bit like the proverbial London buses – you don’t see one for ages and then suddenly three arrive in succession.

Well, we have had the “haven’t we had a lovely holiday?” blog post, followed by the “check out Ava-Jane making a cake” post with nary a word said about Brexit and, as ardent followers of this blog will know, I do like to bang on about Brexit.

So here goes…

I would so like to be able to distil down the essence of why Brexit is such a nincompoopery into digestible chunks, so that anyone who supped upon them might reflect:

“Oh… yeah… that’s a fucking load of bollocks… isn’t it?”

What is it that we could say that would convince that basically the whole exercise has been a complete waste of time and that we have a whole host of things to be getting on with that isn’t going to be resolved by the one issue that we are expending all of our political capital on?

If, as me, you think that much of the Brexit vote was motivated by a disgruntlement at the general degeneration of the fabric of society and community that we used to believe existed, I think it is important to point out the degenerations that leaving the EU will not solve.

It will not solve the perceived degeneration of our educational, health, housing or policing situations. These are all areas that fall outside EU competencies. So, if any of these are your principle political preoccupations, don’t look to Brexit, look elsewhere.

Likewise, if you think that our problems lie at a more macro… degenerational (is that even a word?) level, such as: international terrorism, global- klepto-capitalism, the destruction of the only inhabitable planet in the known universe – none of these will be solved by Brexit. These are the kind of things that are better dealt with when as many people as possible work together as closely as possible. For example, it’s not great diplomacy to have to say, “Eh… Monsieur, les French people, please could you arrest this connard terrorist who ‘as been saying that you are European batards just like what we ‘ave.” Or there’s little point Luxembourg having a clean air policy if bordering France, Belgium, Germany and nearby Netherlands are spewing out toxins. These are the kind of things we need to work out together.

I think that it has been proved that the Brexit vote was largely based on degrees of disgruntlement if such a thing can be measured. But I think that we can safely say that if fewer people had been disgruntled on that particular day in June 2016, our world would look considerably different from what it currently does. I don’t know why any given person is disgruntled. I am disgruntled for reasons X, Y and Z and then the next person might be disgruntled because of A, B and C. And of course we must not forget the person who has the hump for M, N, O but the problem with Brexit is that it will only ever solve Q…and no one was ever really worried about Q.

It would be so great if we could just sort of say, “Ok, silly idea, let’s reset… As you were.” And then we could actually look at the political parties that we have got and what they are actually saying, and then I think it might me a bit more “Oooooh, check him out, he really is…., actually is… a throwback to the 1980s, where your stance on the Israel/Palestine issue defined every thread of your political existence”. But if the 1980s isn’t nostalgic enough for you, you have got the other lot, who have gone full 1880s. You have to admit that if ten years of austerity hasn’t really worked, the idea that a Rees-Mogg might promote the restitution of the Workhouse, is not beyond the realms of possibility. Brexit has spun us so completely off-course politically that a stand-off between Jeremy Corbyn and Jacob Rees-Mogg is entirely feasible and where Jeremy Corbyn is the patriotic, non-revolutionary, steady-as-she-goes choice.

I mean, WTaF as in What The actual Fuck?

And then Brexit, for me, is just really not very British, because… well… isn’t is just a bit rude? And aren’t we, as Brits, not supposed to be rude. And “they” were quite nice to us, weren’t they?… “so, you want a big monetary rebate in the form of a nice suitcase of cash because Mrs Thatcher says so…. Ok.”; “so, you don’t want to join the Schengen Treaty… fine”; “so you don’t want to join the Euro, either, Ok… fine.” …and then we tell them to “fuck offez vous”. Well, that’s just a bit rude, isn’t it?

If anyone has actually kept reading this far, and want some unsolicited advice, what I think us Remainers need to be thinking about is how to cushion the Brexiteer re-entry into the orbit of “things that mean a shit”. So, for example, if your Brexiteer loved-one has recently increased their participation in political marches for nebulous things like “sovereignty”, you could suggest they could redirect their marching energies into something that meant a shit like, for example, keeping their local maternity unit open. Similarly there are many people getting hot under the collar about illegal immigration within the EU from gypsies and the like but you can reassure them that even if we leave the EU they will still be able to get hot under the collar because of immigration from pakkies and the like.

Should I delete that sentence above? It’s obviously a bit racist but I hope that anyone who has read enough of this blog will know that this would not be my intent.

I do have to admit, in the spirit of honesty that I am advocating above, that my choice of pics of “making a cake with AJ” might have belied the actual experience of “making a cake with AJ”.

There’s he cute pic of AJ showing us the cake she had made…

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And then there’s the pics of what she did next…

 

 

Bake Off contestants can rest easy in their beds!

Mum was always keen that I made sure that Ava-Jane’s own voice shone through in this blog about her. I didn’t really mention how weepy I had got about Mum in Greece in my last holiday blog post. We went to Greece quite a lot when we were kids – a few times on holidays along the lines of the one we just had, so I did a lot of reminiscing about both Mum and Dad. This was mostly when I caught myself being them by doing things like trying to force Otto to eat “The maaarvellous fruit – it is absolutely divine, you won’t find anything so juicy back home!” He, like me back then, flatly refused, he even went for the full English breakfast rather that greek yoghurt and honey for breakfast… I mean really!

So in honour of Mum, I will try to cobble together a post chronicling a day with AJ – which became very cake related! I do love a day with the Squidge, when it is just the two of us and we can go at her pace. She is generally the centre of attention round the house but it does take some quiet time to really connect with her at her level. It would not be accurate to say that her communication is coming on in leaps and bounds but she is increasing her range of vocabulary steadily. She is not big on grammar and because she tends to cut all words down to a syllable or so, you need to pay attention to what she is trying to say but she is increasingly able to get her point across.

Fo, Otto, cousins Connie and Eloise, and friend Milly took various horses off to compete in a national schools jumping competition. Connie, a bit of a horse refusenik, was there to lend moral support. Otto and Milly were sharing pony Polly Rocket, ostensibly they represent the great divide in the Buckingham state school system: Buckingham School vs The Royal Latin, but mates are mates. Ava-Jane and I went along together as part of the supporters network.

As you can see from the photo below, it didn’t start well when I told AJ that we couldn’t take the dog. This is her “no-one has ever been sadder than this face – I am sadder than Sylvia Plath after listening to the collected works of Joy Division”. The dog was also giving me the death stare.

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But off we went! Great day all round. Milly won an individual award and Otto’s team  came fourth. And for the little class warrior in me, I did enjoy the fact that the state schools did well in a competition inevitably dominated by private schools!!

The supporters…

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…Otto and Polly looking the part!

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AJ and I decided that we didn’t need to spend the whole day there, so we made our way home as soon as we conveniently could.

She does get tired quite easily and fell fast asleep in the car. When I got home, I left her there to snooze while I made it up to the dog and took her for a long walk. Don’t worry, Pilar was around and about so there was someone to keep an eye on her.

We then took ourselves to the sitting room and I thought I had it all sorted, with AJ set up with Peppa Pig on endless stream and me with a pile of weekend newspapers. But then Peppa got to an episode where they were all making chocolate cakes. AJ fixed me with her eyes of steel and asked “chocolate cake?”. You see there are some things that she is able to say very clearly – and that’s one of them!

Unfortunately we didn’t have any lying around the house, not even a chocolate biscuit that I could fob her off with. Daddy Pig seemed to be involved in the cake-making process and not wanting to be outdone by a famously useless cartoon pig, I thought to myself, “How hard can this be? What better way to bond with my beautiful than over some baking?”

I love cooking but very much take the chuck-it-in-and-hope approach, I have never gone down the baking route as it seems a little too precise. Precision isn’t one of AJ’s strong points either, to be honest. I don’t even watch Bake Off. But we had inherited a Kenwood mixer from Mum and it came with a book, we seemed to have most of the ingredients, so we washed our hands “wa, ha” as AJ puts it, and made a start.

Reading the recipe… “Me ree boo”

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Measuring and counting the ingredients… “four egg, cocolate, bu” 

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Putting Mum’s mixer through its paces… “Me do”

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The best bit: licking utensils. “Me eat”. The horse lot arrived home just as we reached this point, Victoria looks a bit suspicious.

AJ not sure it was supposed to look like that. So she had to check. “Me eat more.” 

“Me cake”.  We had to do a bit of patching up and I needed to make an emergency run to the shop to get some cream to make sure that we had plenty of ganache to try to cover up the internal workings. But AJ’s face in this picture shows how proud she was of the job.

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“Bru tee” – very important after so much cake.

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And then it was off to bed. “Me ree book”.

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“Mik, Dada.”

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It’d be a lie to say that hanging out with AJ was easy. I hope that I have always been honest in this blog; looking after someone with severe disabilities who needs to be lifted in and out of her chair to go to the loo, go to bed or when she needs a cuddle is physically hard. It can also be heart-breaking when she has her spasms (they are less severe currently and disturb her less). Lack of speech is frustrating for her, when she is someone who is bursting to communicate. She has just started to spend a night away every two weeks at a home, as part of a relief package that we are receiving, which I find difficult to accept but is probably a good idea. And we pretty much always have someone living in, in one capacity or another to help us out.

BUT… but all that said, I can truthfully say that spending a day with AJ is just about the best fun that I ever have. She can’t say much but can make me guffaw like no one else I know.

Amongst the Lesbians

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I hope you appreciate the clickbait title for something that is really little more than a “look at our holiday pics” post. Well we were holidaying on the island of Lesvos – home of the 6th Century lyric poet, Sappho. She wrote poems about her love for women and so her home island became associated with the homosexual love between women. The islanders certainly milk the association and we spotted a Sappho hotel, Sappho tour guide and even a Sappho estate agency. The local Women’s Festival is well known and was about to get started when we were leaving, see link if you are interested: International Eressos Women’s Festival

Unfortunately fragments is all we have left of Sappho’s prolific poetry – the Church burnt a lot of it for sadly obvious reasons. But she is a truly unique female voice from such a long time ago, as I think you can see from this fragment:

Some say an army of horsemen, others
Say foot soldiers, still others say a fleet
Is the finest thing on the dark earth.
I say it is whatever one loves.
I would rather see her lovely step
And the radiant sparkle of her face
Than all the war chariots in Lydia
And soldiers battling in arms.
…which I think is rather beautiful.
Anyway enough of that kind of thing, on with the self-indulgent blog post.

My sister has suggested that I should try to monetise my blog somehow by getting sponsorship for writing about disability and accessibility. I am not sure how I would go about doing this and I have not gone down this route yet. So if this post has something of the flavour of “Brought to you by Neilson Activity Holidays – Relax as hard as you like”, I can assure you it’s just that we had a fab holiday and I am not getting any cash reward for bigging them up!

We were recommended one of these holidays by some friends who have two boys with disabilities because they know what they are doing. The head office really listened to Fo and suggested the resort in Lesvos because it it relatively small and crucially flat, so no painful inclines to push AJ’s wheelchair up and down. We could even cruise easily to the local town with the kids… or even without to visit the immensely cool Parasol Cocktail Bar.

What was really great about the service that Neilson provided was that we had, at no great cost, one-to-one care for AJ, some days until 11 pm, which allowed Fo and I to have a couple of evenings together, see Parasol above! AJ’s carer was truly amazing, if we manage to get enough money together to do this again next year, we are basically going to stalk Siobhan, or “Born” as AJ called her, and find out where she is going to be, so they can hang out together again.

Siobhan was great at integrating AJ, making sure that she took part in all the activities and getting her out on a catamaran and a speed boat, which she loved as she is a massive adrenaline junky. AJ won the coveted “Resort Celebrity” award on our last day as everyone there had got to know her.

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Best of all, though, was that AJ made two little mates, Lottie and Ellie. Not everyone of her age really gets Ava-Jane. Her old mate El and her cousin Guin are two of those.

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I love this pic of Guin and AJ having a good cuddle by their great-aunt Paula.

Kids who are a bit older than her tend to love hanging out with her as she is cute and younger kids like playing with her as they play with the same sort of stuff and enjoy the same TV programmes. But she is often not on the same wavelength as kids of her own age as she can’t chat and sometimes scratches. Lottie and Ellie, however, completely got her and it was amazing when they took her off, whizzing her around the resort in her chair. I only had the slightest of heeby jeebies as they hurtled past the swimming pool, thinking quite how quickly her wheelchair would sink with her tightly strapped in…

Here are some assorted action shots from the hols. I have to say that the advantage of a still is that you don’t see what happened next. My impressive looking backhand ended up somewhere beyond the court and Otto never got back in a boat with me after the capsizing incident…

So all in all, a great holiday, back to reality has been a bit of a bump but that’s the way it goes.

On the way out… and on the way back, tanned and knackered.

 

Ava-Jane says Remain!

Ava-Jane says let’s have a referendum on the facts with three clear choices and a transferable vote system to guarantee a clear and indisputable majority.

OK, that’s bollocks, she didn’t say anything of the sort. AJ tends to keep her political views to herself. But I wanted to do a Brexit post and this is supposed to be a blog about Ava-Jane, so I was trying to squeeze her into the narrative.

So this is basically going to be Brexit rant but I will scatter some pics of AJ and other members of the Baxter family in appropriately European locations to make a fairly unsubtle point.

At one point this was a travel blog as we drove, fancy-free through Europe when Brexit was nothing but a raving fantasy in the fetid minds of the nutters who seem to be running the country. So we’ve got lots of Euro pics…

…here are some.

I was lying in bed the other night and got to thinking about Brexit-related catastrophes – I am that kinda guy and I came up with a list of pretty grim things that either are happening or it’s fairly clear will happen. Depending on where you stand, you might not think they are all catastrophic, indeed you might welcome some of them but I bet you’ll see one on the list that you’d consider disastrous.

Brexit-related catastrophes:

  • An understaffed NHS
  • A plummeting economy
  • Major companies leaving the UK
  • A Corbyn-led government
  • A Rees-Mogg-led government
  • (take your pic of which of the above would be most catastrophic)
  • A lack of cheap labour
  • A resumption of hostilities on the the island of Ireland
  • Being flung into trade agreements with the likes of Trump’s America, Putin’s Russia or Modi’s India – on their terms
  • Having to renegotiate a trade treaty with the EU – on its terms
  • The time wasted having to renegotiate and redraft countless laws and legislation
  • The City of London decamping to Frankfurt or Paris
  • Trying to standalone at precisely the time when we most need to work together, cf climate change, threat of an expansionist Russia, cybercrime, jihadi terrorism
  • Reawakening old prejudices and bigotry
  • A generational schism as the younger generation realises that is has not only inherited an economic situation where their lives are likely to be worse than that of their parents, they have also been handed a diplomatic shitshow… which even Rees-Mogg admits might take fifty years to show any benefits.

For, what?

The right to consume fruit of the shape we choose? Blue passports?

Anything else?

Taking back control…?

Last year EU net migration was around 100,000 – the lowest level recorded since 2013.

Estimated non-EU net migration is 227,000 a year – the highest level recorded since 2011. It has been almost consistently higher than estimated EU migration for decades.

fullfact.org/immigration/eu-migration-and-uk/

Sovereignty?

That was one of the big ones for the long time Brexit purists – the Daniel Hannans – the “intellectuals” of the movement. We have laws and duties imposed on us by bodies that are far less democratic than the EU could ever be. If we are going to be striking deals with far-flung countries, we will be accepting their rules. We won’t be free of regulations, it’s just the the regulations we will be abiding to, will have been set by Donald Trump and his ilk.

Free trade?

I was chatting with a friend who thought that trading with New Zealand could be promising. There are 4M Kiwis and 350M+ Europeans and Europe is a lot closer. We basically have a load of pretty rich people right next to us and if commerce is your thing – that’s a really good thing. I am no businessman but I am not sure how excited we should be getting about being able to trade with countries that are either a long way away, quite poor, or both.

Cutting red tape?

We are going to have to make our own. When people worry about the effect of a no Deal Brexit on flights, it’s because we would suddenly not be covered by all the regulations that you kind of want to have in the aviation business, so insurance companies would’t insure the airlines. So we would have to sit down and draw up all those regulations all over again. Great for lawyers, pretty useless for the rest of us.

Who are we talking to?

One of the major of the many errors of this whole process is that it has failed to take into account the people who were sitting on the other side. Obviously the whole thing has been triggered by a little England mentality that sees no need to look beyond these shores. We somehow failed to understand how this whole thing looked to the people we were about to negotiate with.

From their point of view, Britain has always had it pretty good when it comes to getting its own way – we are not in the Euro, we are not in the Schengen Treaty, the EU adopted the single market according to Margaret Thatcher’s diktaat, they also agreed to send a whole load of money back to Britain becuase she told them to and they agreed to Britain’s insistence to bring in the Eastern European countries, which a lot of EU bureaucrats were wary of as they were not mature democracies (ahem Humgary, ahem Poland).

And then after all that we declare that we are off. And we go around mouthing off about how each individual European country will come running to us, pleading for some sort of deal – the “Germans will want to sell us cars, the French cheese and the Italians prosecco” line of argument.

This entirely fails to take their point of view into account. Let’s dabble in the kind of national stereotypes so beloved of the Brexiteer; this fails to imagine that the French might be obstreperous and truculent, the Germans disciplined and iron-willed and the Italians… well the Italians have a lot more to worry about than where they are going to offload their sparkling wines.

Holding the EU together is in their interests. It has massively benefited the countries of the European Union – the countries that looked to faring so badly post the 2008 crash – Spain, Portugal, Ireland and even Greece are coming up quite nicely thank you very much.

The European project has always had as one of its main objectives to keep the peace between France and Germany and it has worked. The EU is instrinsically woven into the body politic of those two countries and if falling out with Britain is the price they have to pay for keeping the European project on course, they would pay it. They told us they would and they will.

It turns out that if you are rude about people for decades, they might not be predisposed to do you a favour. Who knew?

Bringing it all back to Ava-Jane… She takes a cocktail of drugs, some of them quite rare. She nearly ran out last Friday and I had a desperate time ringing round pharmacies and medical helplines to try to track one of her meds down.

We now have the government preparing for a no-deal Brexit and the Brexit secretary issuing the calming words that there will be “adequate food”. Our food and medical supply lines are incredibly international and fast moving. No one holds stock anymore, efficient, just-in-time transport means that goods appear just when they are needed. Trouble is, if you screw these transport systems up by making them wait around for longer than their systems allow, the whole thing goes belly up.

We really do need to prepare for the worst, should we be stockpiling AJ’s meds? The three meds that she is currently on are manufactured in Sussex (phew), Brussels (gulp) and Iceland (who knows).

On a personal level, I just feel so European. It’s amazing to have such a rich mixture of cultures right on our doorstep. And that’s another thing, Europe is a mixture of cultures, it hasn’t become a homogeneous gloop – the French are still very French, the Italians couldn’t be more Italian and the Spanish are exceedingly Spanish, well when they are being Spanish, rather than Catalans or Basques or Gallegos. And we are still British, when we are being British, rather than Scottish, Welsh, etc…

It was great how all the lovely people from all over Europe, who have looked after Ava-Jane, could just appear: Boro from Hungary, Ander from the Basque Country, Pauline from France, Renska and Emily from Holland, Dani and sisters, Pilar and Olga from Spain.

Here’s a gallery of us with some of our Euro friends. Can you spot the odd one out?

So we have made it more complicated to hang out with nice people who we need to be here to do vital jobs because we are afraid of losing out national identity? Did you see how excited we got when an over-achieving football team led by a chap in a waistcoat didn’t do very badly? And we have made it trickier to go and live in or visit countries where they have great stuff like Picasso paintings, little balls of rice with cheese in the middle, boxes of wine that it’s OK to buy, herrings (I put that in because I thought we should have something Nordic, I am not actually a big herring person) and where they kiss you lustily when they barely know you and make more noise than you are used to and they do actually wear lederhosen and not even ironically.

So we are going to have to queue more and pay more to get to all this lovely stuff and for what? see above…

Here are some pics of us being all European.

Clocking up another birthday!

I’ll keep it short this evening – I posted a birthday pic of AJ on Facebook, so loads of you will have seen that, even though not everyone is on Facebook. I have also extensively updated the ABOUT page for the blog – bringing it up to date for the last half decade – one wouldn’t want to rush these things! You can read it, by clicking on THIS.

But it’s Ava-Jane’s birthday and with someone who has been through all she has been through every birthday seems like a little victory. It was a special one this year as it more or less coincided with the 10th Anniversary of our North Bucks Down’s Syndrome Association.

Ava-Jane is nine today and we first met up with our lovely association at Thomley Hall, where we were on Sunday, shortly after she was born. It’s a bit odd a first, being thrown together with a bunch of people with whom you share nothing other than the affliction which has seemingly befallen your child and then before you know it, they are family; precisely because of that common bond. Down’s Syndrome is by far the least of Ava-Jane’s problems but, like when Volkswagen Beetle drivers meet, us DS parents give each other that wink when we cross in public. It was great to celebrate AJ’s birthday with this family, some of whom, like Niamh and Thomas, are now young men and women while we welcome in newbies like the beyond scrumptious Baby Billy. Ava-Jane exercised her right, as the birthday girl, to cuddle Baby Billy on demand.

 

OK, it’s my blog, so here are a load of pictures of me and AJ.

 

Having a birthday tickle with godfather Andrew Stan – one doesn’t see him on social media all that much – he prefers trees.

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Cakes with some members of our North Bucks Down’s Syndrome Association – to be honest getting them all in for a pic can be a bit like the proverbial herding of cats.

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A rare picture of the four of us together. There was another one in which I didn’t look quite so dreadful but Fo looked a bit ropey, so I (I think wisely) chose this one.

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Chirpier

My last two posts have been titled “Neglect” and “Death” and the ones running up to those have been equally lugubrious, so I thought that maybe I needed to sound a chirpier note.

So the chirpiness of this post will run the full gamut of good humour from a visit to the neurologist via the travails of disabled access and probably encompassing the unbridled joy that is Brexit.

But ho and indeed hum, one shouldn’t linger too long on the positives. I have just had a day with Ava-Jane and it really is one of the most joyous occasions imaginable. OK, so we were hanging out because I had to take her to a neurology appointment but it did mean we got to hang out. FYI the upshot of the neurology appointment was that we seem to have hit on a med that has arrested her major epileptic fit and doesn’t make her floppy. This means that we can reduce the nasty med that didn’t do much and did make her floppy. She isn’t getting obviously cognitively worse even though she will never recover the use of her right hand and other functions..

With the aim of being chirpier, I’ll bung in some chirpy images. Here is a little gallery of AJ hanging out with some of my mates. There’s Clare giving us a guided tour of Christchurch College Oxford in her role as chaplain there. Pauline our lovely French carer is a massive Harry Potter fan and wanted to see the dining hall that is the model for the dining hall at Hogwarts. There’s AJ and Lorna both looking very chirpy indeed, Lorna is our uber-designer from work – by that I mean she is a supreme designer rather than she designs cars for paradigm shifting transport companies. And then there’s AJ looking lovingly at Fergus, who was paying usa fleeting visit from Oz.

 

 

Here’s a random one of Otto and Polly taking great care to clear a jump and Otto seeming to take great care to clear Polly too. 

Ava-Jane getting pushed by Milly and Maddy at the village Coronation Sports Day is by now almost a tradition. Please observe Milly’s skilful technique to dislodge the hurdle just as AJ reaches it. AJ got a couple of first places that, admittedly, did involve some bending of the rules. Having the egg in her wheelchair seemed to count for the egg-and-spoon race and she sort of draped the sack over her knees for the sack race but you know, a win’s a win and we have got photos to prove it!

 

And some very chirpy rolling around on the grass with Nonny.

 

 

 

 

 

 

 

 

Minor rant about wheelchair access. First we had a hospital visit and you’d think that a hospital would have pretty good wheelchair access but not first the first time, it felt like an obstacle course with the added frisson of a very sleep slope and heavy traffic.

 

Then we paid a visit to my office. We are having major building works at work, which is a bit of a pain for everyone but getting AJ in was interesting. It obviously isn’t a problem, she won’t be starting her career in the educational publishing business anytime soon, so she doesn’t need to come to the office too frequently. But in our block there’s a disability assessment company, that is tasked by the government to check that people claiming disability benefits are actually disabled. There have been some horrendous horror stories about this system with people forced back to work and then dying shortly afterwards. Though it did make me think that if anyone managed to actually get into the office, it might be taken as an indication that they are not very disabled after all.

Brexit, I promised some Brexit but really I don’t think I can summon the effort. One day when I am feeling more full of beans I am going to trawl through my old blog posts to show that I predicted exactly this. This abominable, all-encompassing trudge through endless nit-picking and hair-splitting to accomplish so very little. I knew that whatever the benefits of leaving the EU are, and there might be some… I suppose, they would be far, far outweighed by the disadvantages of the process to get us there. So we will take the Teresa May approach and leave actually doing anything on Brexit for another day.

The sun is out, AJ is hilarious and can still make me laugh more than anyone I know, Otto is a dude and my wife is cool. The loss of my mother is something that, I hope, will stay with me forever but it has meant that those who remain have been brought closer together. My cousins Henry and Patrick have been amazing in helping us sort out both Mum’s affairs and Mum’s most incredibly untidy home and garden. My sister Mary has been able to spend time here and is so on top of things she even writes emails made up of nothing other than bullet points. Frightening! We have had Rachel, Lucy and Charlotte visiting and helping with the tidy up. Brother Toby is flying back from Oz next week. So life is good. Chirpy, chirpy, cheep, cheep in the immortal words of that great piece of music.

 

Neglect

I love these pictures from a “doing the chores with AJ” day. These were from before she had her horrendous haircut.

 

I got home this evening and had a little rant about work to Fo and then she asked me if I wanted to know how their day had been. Fo had just got back from AJ’s Parent’s Evening, which I couldn’t make because of work. AJ’s Parent’s Evenings tend to be quite well populated with various therapists, teachers and social workers. The social worker, who knows AJ well, was worried that she didn’t look in great shape and had concerns that she was was being neglected. Bam, that’s quite a blow to the solar plexus… Neglected… Ava-Jane… by us?!

To be fair to our social worker, AJ does look in quite a state. She has had a horrible pudding bowl haircut, she’s got scabs behind her ears and a crust of impetigo and glue on the top of her head, she’s got bruises on her legs and red eyes.

But other than the bruises on her legs, which we can’t explain, the rest of it is all because of the stuff that we have been worrying about for ages. We thought we should get her a short haircut before she had a bunch of electrodes stuck to her head so they wouldn’t be so painful to remove. She’s got horrible impetigo, the treatment we have been given is a hydrocortisone cream, which does the trick but the moment you stop applying it, the impetigo comes back. But you can’t just keep applying hydrocortisone because it is filthy stuff. This also explains her red eyes – she itches her head that’s got the cream on it and then rubs her eyes. You really shouldn’t rub your eyes with hydrocortisone so we stop applying it and the impetigo comes back. Aaargh.

I have always tried to not criticise all the wonderful people who make up the institutions that have cared for AJ through all her various ailments and I am not going to start now. The NHS is a unique institution that has failings like all enormous institutions and it fails more often when it is under-resourced. And it is chronically under-resourced. May’s “hostile environment” to immigrants means that droves of Indian doctors have been denied entry into fortress UK and what with European nurses deciding that anywhere else would be preferable to setting up in a land that… Oops rant!

As I was saying, I am not going to criticise the people who care for AJ on a day-to-day basis but (but!) the machinery that we have to deal with means that AJ hasn’t been able to see her Paedriatician after six phone calls from Fo, we haven’t heard anything about the EEG that she had two months ago and we have been completely forgotten by the plastic surgeon who was supposed to be fixing AJ’s rib cage.

Fo went to a disability trade show the other day and came back despondent about not being a good parent because we hadn’t tried all of the massive gamut of kit that was on offer. “On offer”… at massively inflated prices, I might add. The “special needs equipment” economy is a strange one. We have got a lot of stuff for AJ. For example, she has got two wheelchairs (everyday and cross-country), a toilet chair, a bath chair, a round-the-house chair, a massive walker and an electric wheelchair. Of all of these, we only paid fully for the cross-country wheelchair. So the manufacturers of “special needs equipment” are selling to a massively subsidised market where the end-user isn’t actually paying for the stuff.

But on the other hand, the manufacturers are selling to small niche markets, where two people’s special needs will never be the same. For instance AJ needs a splint on each leg but they each need to fulfil completely opposing functions – one needs to keep her right leg rigid and other is supposed to make her left leg flexible. There really won’t be many AJ’s – so they need to make a bespoke set of splints for a market of one.

Sorry that was another rant and not really relevant, what I wanted to say about Fo’s visit to the trade show was that it is quite easy to think that you haven’t done it all for your kid who has all sorts of problems. It is probably the same with any kid but I do think it is accentuated by a child who has all the various problems that AJ has.

The truth is that AJ is never going to be well and she will probably not live an awfully long time. So I think that our responsibility, as parents and for everybody that knows AJ, is to make sure she is as happy as she can be. And that’s something that I do know – she is the happiest person that I have ever met. She might look like crap but she can make me laugh like no one else. After my post-work “woe is me” rant, I climbed into bed with AJ to read her a story. She got in a strop about something – it took me a while to realise that she wanted me to get tucked in properly under the duvet. Then my old pal Ali called and AJ wrenched the phone from my hands because she wanted to have a chat and a giggle with with Ali on the phone.

When we did eventually settle down, we read The Little Elephant’s Walk by Adrienne Kennedy – I have no idea which jumble sale we got it from. After a quick search, the internet seems to know very little about this book but it’s gorgeous and had plenty of animals that AJ knew the name of. You do kind of need to know what AJ is talking about to pick up what she is talking about. She communicates in a combination of one-handed signing, noises and unfinished finished words. So for a monkey she scratches her arm pit, an elephant is a “le-fa” and all birds are tweet-tweets – even an ostrich I found out tonight.

A little session like that with AJ is without doubt the ultimate way to unwind – it puts things into perspective like nothing else. She’ll take a look at you and giggle like a loon and then ask for a “hug Dada” and that’ll do.

AJ is NOT neglected – she’s just got so many problems we can’t keep up. So in the meantime the only answer is extreme silliness; see below.

Death

Apologies for the lugubrious title to this blog post but it’s kinda what it’s going to be about. I could have tried something maudlin, such as “Intimations of Mortality”, or gone for a literary angle like “Shuffling off this mortal coil” or even attempted to inject some forced jollity along the lines of “Popping ones clogs”. However, there seems to be much death around and I had might as well say it as it is.

Until only a few years ago, I hadn’t really had much to do with death. My father died when he was just sixty and I was twenty one and that was the death that defined my life. His was the only dead body that I had seen until I saw Mum. I have, of course, lost grandparents and uncles but at the time it had felt like it was their time to go. The thing is though, as it gets closer, I believe it never actually feels like it is your time. Mum certainly didn’t feel it was her time. Maggie, the last friend to see her alive, said that she didn’t think Mum thought she was going to die. Mum wouldn’t have considered it her time until she had gone past her own mother’s ninety seven years – she fell eleven short.

But recently there really has been a lot of death about for me. I have lost two dear friends, Toby and Donald, and my cousin Angus, all about the same age as me, so tragically young from my point of view. Then obviously Mum will leave the biggest hole imaginable.

Today was another grim death day. We decided that we had to put down the beautiful Corrie (horse… FYI) today. Mum had bred her from her talented mare Dragsie but other than beauty, poor Corrie really didn’t have very much going for her. She was chronically allergic to grass – which is unfortunate if you are a horse and suffered massively from spring to autumn even when wearing her burka to protect from flies. She then developed ME – yuppie flu… in a horse!! – which made her listless with no enjoyment of life. Then finally she got a syndrome that degenerates a bone in the hoof (navicular for the equine types out there). We tried everything but even just walking on grass was obviously massively painful. So we did that thing that we can with animals. Luckily a few months ago Mum had agreed that she should be put down but Fo couldn’t and turned round on the way to the vets, so we didn’t have the feeling that we were doing this behind Mum’s back as it were but it was a very hard decision to take. Vic, who had ridden Dragise and trained Corrie, came over to say goodbye, cry a bit and support Fo. Even though it is “for the best”, it feels like we are losing one of the family. AJ calls all horses Corrie because they have grown up together.

The “man” came over this morning just as I was driving away. Corrie was by the hedge where her mum had been put down next to Mum’s daffodils. And I was driving away to my Mum’s cousin, Topher’s funeral.

 

Topher was not a young man but he was the youngest of Mum’s generation of cousins. He had been suffering from increasingly severe Parkinson’s for years but was still full of life. “Before his time”? I’d say so, but then I’m fifty next year. He was a Concorde pilot and that was always pretty cool, he was also a sparkly, kind person that the world will miss.

We gathered for Topher’s funeral at the old family pile, where my mother and Topher spent their Christmases. The house has passed through a number of owners since the last Orlebar, another cousin of my mother’s, had to sell up. The current Indian owner kindly let us take tea after the funeral to say farewell to Topher in the house that had meant so much to him. I saw cousins who I rarely see but who I had sadly just seen at Mum’s thanksgiving.

And now that I have been to a number of these sendings off – funerals, thanksgivings, memorials – I am beginning to understand their role as a key ritual in our lives. They are a recognition of death, the one constant in our lives. We bid farewell to the departed and gather round them to remember them, by being there, still alive, able to carry them with us, in our memories. It is good to recognise death, however horrible it is, we won’t escape it so we might as well face up to it.

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So that was my death for today.

Death is also in the air on a more global scale. The slaughterhouse that is Syria will stain us for a generation. I certainly do not have any answers to what should, could or should have been done a number of years ago. But the bombings this past weekend seemed a particularly pointless affair. Bombing to stop bombing feels like a particularly vicious circle of twisted logic. For Teresa May to have signed up for this without a parliamentary debate to the click of Donald Trump’s teeny fingers seems especially unwise. Laying aside that he is categorically the worst President in history, there seemed to be a whole lot of angles that needed to be looked at before getting involved. Though the bombing that did actually take place seems to have had the sole objective of the west being able to say “We did something,” without having done anything at all. Thankfully really, if we had actually done anything meaningful all hell could have been set loose (*whispers* “and it still can…”)

I think I have been a few blog posts without banging the Brexit drum so I had better insert a convoluted connection at this point. Wasn’t Brexit meant to be all about sovereignty? Haven’t we just committed an act of war on the say-so of the President of a foreign power? Whatever modicum of sovereignty we will have regained from Brexit – we are still haemorrhaging it through the transnational corporations that refuse to pay taxes on the money they make in this country, through being marched to war on the orders of a foreign state without the consultation of parliament, through existing and future trade deals that put the interests of companies above the interests of citizens. If we can’t levy taxes, wage war and protect our citizens, will we really be this sovereign nation that everyone gets so excited about?

A note on the pics. I thought that Corrie had been put down by the hedge, so I added some pics from me and Vic of her there and one with a nostalgic sort of filter to it to make the hedge look like it it’s from one of our old family photos. Then Fo told me she was actually put down by the lake, so I took the picture of the weeping willow, which felt apt. The willow will also soon be joining Corrrie and Mum and Dad, who planted it, as it has wept too much and is falling into the lake. The big house is Hinwick House and then there’s Hinwick House being photobombed by Georgie, James, Mary and me – some of the less illustrious scions of the family!!

Lambs 2018

We have got try to summon up a semblance of normality, so how about yet another lambs post? Or another EEG post? I think we will be having another EEG before we have any more lambs.

So as you can see in what WordPress terms the “featured image” of this post (the picture at the top) or the one below of AJ getting breakfasted by super top cousin Molly, AJ got to wear a head-dress and electrodes for three days. She has had this before to try to get to the bottom of what is going on in her head when she has her spasms. She has the electrodes stuck to her head and whenever she has a spasm we have to blip a button. We also have to keep a rigorous written record with a description of the spasm and any other details that might be relevant. So when the boffins read the output from the electrodes they will be able to identify when she had the spasm, thanks to our blipping and rigorous record-keeping, and see what was going on in her head at the time.

Or at least that’s the theory… It didn’t quite work out that way in the end. Because even though AJ has been having quite frequent and quite heavy spasms for a while now, she didn’t have a single big one during the three days that she was plugged in. No idea why. Though predictable unpredictability is what AJ is all about. We have had the lovely Icelandic Hannah with us and she has been doing Reiki on AJ. I am a total sceptic but happy to give anything a go that doesn’t seem harmful and Hannah has something of the shaman about her. So maybe it was the Reiki that kept the spasms away – she had a massive one today and Hannah left on Tuesday.  Hmmmm… Anyway the chances are that we will have to repeat the process some time soon.

AJ did have a pretty funky hairstyle for her grandmother’s funeral – the glue takes a while to get out…AJ-Molly_EEG

Lambing this year has been considerably less stressful and time-consuming than it has been in other years, thanks entirely to the lambs not getting born here! Fo’s dad John brilliantly assessed the situation here and realised that what with everything else going on, we could do without having to be running around the fields trying to keep the little buggers alive. I say “we”… it’s mostly Fo!

So we (Fo again) delivered the pregnant ewes to John’s and went back last weekend to check in. We found a field full of happy lambs as the photos below can attest. The whole flock had originally been John’s and his father’s before that so he’s a lot more competent at looking after them than we are. Three of the ewes had been orphans that we had hand reared a couple of years ago and Otto’s favourite, Skye, was a mummy – her lambs got a lot of cuddles. I love the fact that generations of this family of sheep have accompanied generations of Otto and Ava-Jane’s family – there’s something quite wholesome about that.

I am not going to write about Mum today. I will share more about her funeral another day.