A post from Otto

Otto and I have been busy on our podcast (https://ourhistorypodcast.com/ should you want a listen) and I have not posted here for a while. Not really an awful lot to say on the Ava-Jane front. She is doing well, as happy as ever and even has homework these days!! And there’s just too much to say on the political front and I don’t know where to start (Jez We Can!! Sorry!)

So I thought I would just post this beautiful speech Otto gave at his school about Down’s Syndrome. And here are a couple of pictures of the two of them. She really could not ask for a finer brother.

IMG_9088IMG_9108

Down’s Syndrome

Hello and welcome, as I hope you all know we all had to do a speech on whatever we wanted from football or cars to superheroes or Xboxes- anything in the world. I chose to do mine on Down’s syndrome and how it is misunderstood.

The dictionary’s definition is that Down’s syndrome is a congenital disorder arising from a chromosome defect (basically that’s where the 21st chromosome is in a group of three instead of a pair.) causing intellectual impairment and physical abnormalities including short stature and a broad facial profile. It arises from a defect from chromosome involving chromosome 21, usually an extra copy- trisomy 21 (basically what I said earlier).

That may of got a bit sciencey so to cut it down into non-dictionarified language: Down’s syndrome is a learning disability and not an illness or a disease as many people can think also it’s not overall a bad thing. In fact, I personally think that people with Down’s syndrome are typically happier than people without as I’ve never met a grumpy person with Down’s syndrome. Ah- yes, what Down’s syndrome is. It’s a learning disability as I said earlier but that doesn’t mean people with Down’s syndrome aren’t particularly clever but just that they may take longer to learn certain things- for example, my sister has Down’s syndrome and at three she was just on her way to learning to walk but unfortunately she had a stroke about a year later.

The way Down’s syndrome was discovered was by a Victorian doctor: John-Langdon-Down who coincidently had a grandson many years later who was diagnosed with the disability and that is how it got the name because it’s the syndrome of Jonathan Down (the grandson) therefore Down’s syndrome.

I went on a protest march about a year back, just outside the House of Commons, for a campaign called don’t screen us out- the aim to stop doctors advising parents to abort the pregnancy if tests say that the child would have Down’s syndrome because all doctors saw was what was on paper, the statistics: in other words the dictionary definition using the words defect or disorder and not what they grew up to be like. As I said earlier my sister has Down’s syndrome and she is probably the happiest person you will ever meet. She will make you laugh and smile like never before- but now the health minister (Jeremy Hunt) is trying to use testing to screen all unborn babies to see if they have Down Syndrome.   The test can identify lots of abnormalities, but it is just being used for Down Syndrome; it is an opt. Out able instead of opt In able test which means you used to be have to ask to take the test but now Jeremy Hunt wants to swap it around-, which will increase the abortion rate and overall decrease the population of People with Down’s syndrome in the UK. The abortion rate in Iceland for people who found out that their child would have Down’s syndrome is 100%, which really breaks my heart.   50 years ago, parents were told to leave their children in institutuions and forget about them.   By the 1980’s children with D S were included in mainstream education.   By the year 2000 there were many educated young adults who became actors, gained degrees, ran busineeses and happened to have Downs Syndrome. Imagine – in our generation the UK could eradicate anyone & everyone with Downs Syndrome.   So please agree with me when I say, don’t screen us out! We can’t let this happen in our lifetime.

 

 

Cross promotion ahoy!

Essentially this is going to be a post for anyone who feels they are just not getting enough of all things Baxter through this blog and feels that what they are missing in their lives is a podcast from yours truly + Otto.

Because, yes, such a thing is available and online. Otto and I have been making a history podcast and we have just launched our first episode. As this blog is, entre nous, as it were, I do have to say that the first episode is a bit ropey. We have recorded a few more which we will be releasing and I think they will get better as we go along.

But if you want to have a listen to our introduction and first episode about why we study history, here are some options:

You can go to our website by clicking this link.

Or if you prefer iTunes, click this link.

Some people use Stitcher apparently, if so, click this link.

Family news: We had Mum’s 86th birthday dinner. For very low admin birthday cake, we nicked some ice cream off the birthday girl and put some candles straight into the pot. It seemed to do the trick, see below.

fullsizeoutput_463b

Lambs 2017

IMG_8596

Ewe-tube?

Ah, yes, there she is! …with her baby.

I have been battering away at this blog for so long now it seems to have built traditions of its own. And one of these seems to be the “Lambs” post, see: April 2016, April 2014, April 2013… I think I was travelling in April 2015.

Our household is fairly manic at the best of times but it goes on complete overdrive in lambing season. We are constantly on the look out for ewes who might have lambed so we can all scurry to administer iodine and “Lamb Kickstart” – a vile looking concotion that is supposed to be full of goodies that get the lambs going. We get loads of help from anyone who pitches up, especially the most awesome Lucy and Maddie.

Ava-Jane and I had a day together – just the two of us in charge of various animals. Step 1 was to get rid of the dog and send her to her Dogfather, Andrew. Step 2 was to decide that the horses were probably going to survive on grass for 48 hrs. So that just left the ovines… Step 3 The poor ram, who has been confined to a stable because he can’t be trusted round the lambs, is going to stay confined to the stable.

So AJ and I set about filling buckets of water, see below, and generally keeping a weather eye on everything. We had reduced the focus of attentions to the ewes and the newborn lambs. There was a set of triplets with one particularly chubby one. So we thought that AJ had to spend a lot of the day cuddling the chubby one so that his siblings could have a shot at mum.

So really not much more to say, there isn’t much to be said politically, nothing to have a rave about. Actually as an emotional metaphor, the upcoming elections leave me feeling much like I felt after Atletico just got beaten 3-0 by Real Madrid with a Ronaldo hat-trick; the bad guys have won, the darkness has overwhelmed us, Frodo is not going to get the Ring into the fire, there won’t be enough “I believe in fairies” to revive Tinkerbell, the Dark Side will rise. All is lost!

Look at the lambs, aren’t they cute!

Toby R.I.P.

 

Well this blog is supposed to be about Ava-Jane with the odd meander into a political rant but tonight I want to pay homage to a very dear friend that we lost today, Toby G-S.

Toby was diagnosed with cancer around the same time as A-J, so they were “chemo buddies” as you can see from the photos above. They’re giggling in the face of adversity in the first and then looking more reflexive in the second.

Cancer is such an absolute fucker and fighting it can fuck you up as much as the disease itself. The fight left A-J half paralysed and it did for Toby. But my friend did put up a gallant fight.

Toby was laid low by the chemo for a while but bounced back and embraced life for all that it was worth for as long as he could. In our Pony Club days (more on that anon) it has to be said that Toby was no great horseman but all of a sudden, like some arisen centaur, Toby post-chemo took to the life in the saddle. He launched back into parenting and found some sort of peace in the world and starting addressing everyone as “Friend Luke/Stan/Bobby etc.”

I have known Toby since I was a sentient being and before he was (I am a bit older than him). He was always that massively talented friend who you admire and envy in equal measures. I credit myself for a bit part in the legend of Jamiroquai in that Toby asked me to go and convince his mother that it was actually a good idea for him to drop out of his university studies at a prestigious institution and form a band with a twat in a hat. Once Toby was famous one of my favourite party tricks if I ever found myself socializing with his music celeb crew was to tell them “Toby and I are friends from Pony Club”. I’d get admonished by Toby “So not cool, Luke, so not cool.”

Someone has put together a nice montage of Toby playing in Jamiroquai here: https://youtu.be/_qcEZR4A3Uw

Pictures from the Sleepover party at Toby’s and organized wonderfully by Gaby. Toby and Starzy and Dylan playing a tune en famille – it was great that Toby survived to do this, such a shame he didn’t, so he can’t do it more often. Toby looking handsome. The Pony Club Crew: four fascinating people and me (false modesty will get you everywhere.)

oIMG_2751

But apart from being a massively talented musician, Toby was also the guy that could build cars. These are skills (cars and music) that are both, in their own way, so completely beyond me so it has been great to have a mate who knows about that kind of stuff.

Toby was also one of the funniest, smuttiest people who I have ever known but he carried it off with such humour that you could forgive him anything. And that’s what I will miss so much, that old, old buddy who would make me laugh, who I knew and who knew me. Go well my friend Toby, go well, we will all miss you back here.

21-3

AJ_DSDay

Today is World Down’s Syndrome Day. Celebrated on 21st March, to salute the fact that people with Down Syndrome have three (rather than two copies), hence 21-3. Clever that!

The value of these sorts of days is somewhat debatable but I do love having a day when people with DS are made visible. There have been some lovely blogs from the community of bloggers that I belong to, Team 21, and it is great to see so many happy people and families. In our moments of honesty, we would probably all say it ain’t always easy but we know that we have children of great worth who bring as much and as little to the world as any other child. And as I have often said, I just wish AJ “only” had Down’s Syndrome.

Anyone up for Weird, Inexplicable, Undiagnosed Brain Damage Day? It would probably have to be celebrated on April 1st!

All about Ava

So, this post is just going to be about Ava-Jane, nothing else, no political rants, promise.

I have had the chance to go to a couple of AJ-related meetings this week. We saw her neurologist on Tuesday and then had her Annual Review at school today.

We’d been pressing to see the neurologist for a while. We had even been to one appointment and the receptionist forgot to tell the doctor we were there, so she went home. Now, I love the NHS, it has seen us through all sorts, but I did have to try not to feel too disappointed that this chap was still in a job when we returned this week. 

We have been worrying about AJ’s spasms that seem to be getting worse and disturbing her more. She has two separate things that could be epilepsy or could be dystonia. Ah, yes, that’s a whole load more medical we have to get our heads round, i.e. Google. Unfortunately they are both things that have loads of different types, so there is quite a lot of reading to be done. 

AJ has big severe spasms, Otto used to call them her “Ninjas” as it looks like she is about to do a massive karate chop. She also has a tremor on her right side, sometimes her right hand can be almost constantly moving.

She has been on a variety of medicines to treat both these things as well as the stiffness she has. Her medication programme is basically to try something out and gradually up the dose until we note either a beneficial or negative effect. And you’ve got to watch out that her anti-stiffness meds that are designed to make her too floppy, don’t make her so floppy that she can’t do basic things like sit up or wear a riding hat.  Fo is essentially in charge of her medication, the whole process is a series of educated guesses by the doctors and by us and Fo knows AJ better then anyone and can notice changes better than any doctor who might only rarely see AJ. And obviously she is a very smart woman, my Fo. 

The good news is that the tremors have reduced a lot, the bad news is that the Ninja spasms have got worse. It is quite difficult to gauge how much discomfort AJ feels. Her general demeanour is so joyful and she will always manage to raise a smile however much pain she is in. And obviously as she has not got much communication, it is hard for her to be specific about aches and pains. But these spasms are definitely causing her discomfort and also embarrassment. It is heartbreaking seeing her little face looking bashful and then giving one of her “no one, not Job, not Sylvia Plath, not Morrissey, has ever been sadder than this” faces. See below for examples of this face:

img_646920140118-212645.jpg

So we went to see AJ’s new neurologist. Her old neurologist has finally managed to retire. The very taciturn but wonderful Dr Pike was one of the original three wise men who saw AJ back when her brain damage first set in. He had been trying to retire for a while but kept on coming back to see AJ, partly I think because he found her a fascinating case. She was the first patients with whom he had used a Quaver as a diagnostic tool – he could test her right-sided brain functions by seeing if her vision would track her favourite cheesy snack down and to the right. She still has trouble seeing anything on her right, which was something we discussed with her school, more on that later. Though, I do like to think that Dr Pike (he did look a bit like a pike) also didn’t really want to retire because AJ is so damn cute.

But AJ’s new neurologist, Dr Ramdas, is young enough not to be retiring anytime soon, so she will probably be off on maternity leave just as soon as she has got to know AJ! She seems great but did not offer us any major breakthroughs – more fiddling with meds, trying another one and upping the dose, seeing what the outcome is and meeting again in three months’ time. I do still dream of a resolution, where a one-off pill or a slap round the head would just fix it and AJ would get her right side back and her balance restored. (For info: I don’t slap her round the head just on the off chance.)

So, on we went to AJ’s Annual Review on Thursday (if the times refs jump around in this post it is because I am writing it in chunks!). When we go for a parents’ evening at Otto’s school, you see one teacher, maybe two if they are job sharing, when we go to AJ’s; it’s a panel. We have social workers, visual impairment specialists, teachers, heads of department and therapists of various flavours – even without the physiotherapist, who couldn’t make it (“Again!” says Fo), we had a pretty full session. I do love the fact that AJ has all these professionals on her case. Her main teacher really does seem to be properly on a mission to sort AJ out.

The debate we always have in these reviews is whether AJ, who has both speech and mobility impairments, should be in a class with the speech impaired or the mobility impaired. I have always told her “If you need to get what you want, you either need to walk or talk. You can either get it yourself or you can ask someone to get it for you.” So, should we and her school focus on the walking or the talking? The general consensus seems to be: the talking. I really don’t think she is ever going to walk and she is absolutely lethal with her electric wheelchair. Her teacher said that they don’t really have any radiators left in the classroom as AJ has taken them all out, presumably along with quite a lot of staff shins.

But her talking is coming along. She has got a proper range of vocabulary and she is beginning to put it together into basic sentences. The aim for this year had been to move from two words sets to three words sets. So before she just had things like noun + intransitive verb: “Me go”, “Me eat” or noun + adjective: “black cat”. These utterances really don’t give you enough information to be really able to work with and help her much: “Me go… where?” “Me eat… what?” or “the black cat did what”? But if you can put three words together, you can say things like “Me eat cake” and with that, you can get quite far in life.

So, she is going to spend some time in a class where people are more vocal. The staff do have to weigh this up – to what extent it will be good for her to spend time with people who speak more even though it might not be so good for their progress.

One of the reasons for these Annual Reviews is to the review her statement to decide whether she needs more/less/different care. It’s all supposed to be very official but there is some sort of administrative thing going on, which means it is not worth making any changes to the statement but then all the people who know AJ best – us and the wonderful professionals who care for her – basically decide what would be best for her and then we discuss what the school can afford!

“New hat… Me ride April”

 

She has just got her first riding hat and she can sit up while she wears it and she is very proud of herself.

So, in conclusion… Ava-Jane will probably never walk or sit up straight unsupported but she might well be able to progress in her communication. Her spasms are not epileptic, epileptic seizures are caused by the brain and also damage the brain, so the thinking is that while they make her uncomfortable, they are not doing her lasting damage. We might happen upon a drug, a dosage or a combination of drugs/dosages that alleviate the spasms and the tremors while at the same time not impeding her. Ava-Jane enjoys life as much as anyone I know. Statements, medication, doses, blahdi-blah, yeah it ain’t easy but being AJ’s parent is the greatest gift I have ever received.

Tales from a wonderful family holiday, some cute pics of AJ and just a wee bit of Armageddon

So, 14 Baxters descended upon Sri Lanka for two weeks of sun, sea and sand and fun and frolics. The poor locals must have been worrying that the days of Empire had returned. We chose Sri Lanka because it was roughly equidistant between the UK and Australia, where brother Toby and his mob live.

15910282_10154248584564677_18189887_n

The whole lot, reading from left to right: AJ, Zac, Faith, Toby, Guin, Mary, Nora, Molly, Me, Josh, Fo, Matt, Laura, Otto above. More of same below.

It was AJ’s first time on a plane and, as is our wont of not doing things by halves, we decided to start her off with a ten-hour long hauler. The flight itself was fine, ably assisted by some pretty potent sedatives she had been prescribed, so she slept the whole way there and back. The challenge was getting on and off. They have these teeny weeny wheelchairs that are specially designed to fit along an airplane aisle, which are great but they don’t have any support. I turned away for a second once and AJ tumbled to the floor, oops. We also needed to have special plane seat for her, which needed assembling and disassembling as all the passengers on very full flights tried to get to their seats. Incidentally at the other end of the transport scale, we also discovered that tuk-tuks are also not massively wheelchair friendly.

Anyway, the holiday was a massive success. It was fab spending time with all the famalam. From seeing cool cousin Zac teaching the littlest ones, Guin and Nora to swim, getting AJ breakfasted by Laura and Molly, to having to stay up late and drink a shedful with Toby and Matt so Toby was awake to greet late arrival Josh. And of course and massive hats off and thanks to Mum for sorting it all out. Most of us got some sort of stomach bug, Mum was pretty touch and go for a bit and Otto was projectile vomiting on New Year’s Eve but other than that, it could not have been bettered.

On the AJ front, we are a bit worried at the moment. Her tremors are getting worse and they seem to be discomforting her. She is not one to grumble but she does seem to be in some pain. So it is back to googling yet another medical condition, dystonia, to see what can, or it seems, in this case, can’t be done. So far it seems to be: no cure, pain management.

Spot the difference. Both these photos below are of me and AJ going for a walk, one  was taken in Sri Lanka and the other, a couple of weeks later, in North Buckinghamshire. Can you tell which is which?

img_7736img_7906

 

So enough about that, on to Armageddon. I was listening to a very serious political podcast, Talking Politics, link here. And they were discussing how Trump and his team probably don’t really expect all the ghastly things he is trying to do to get past the judiciary. The US constitution is set up to rein in the president’s power but he is quite happy having the judges stymie his moves while he trash talks them on Twitter. But when something bad happens, and it will, he will then be able to say, “I told you so, I warned you there were bad dudes and those judges let it all happen,” and then he would have popular support for his arseholery. The academics on the podcast were very careful not to stray into anything that smacked of conspiracy theory but it got me thinking. Now, I’d hate to think of myself as a conspiracy theorist but… taking this thinking just a little further, what Trump really needs right now is a 9/11 all of his own. Even though Dubya was caught looking gormless, reading a kid’s book about a goat as the towers fell, he did somehow manage to turn it around and present himself as something that enough people considered to be presidential in adversity. Likewise, Maggie Thatcher’s ratings were through the floor in the very early eighties when Galtieri conveniently invaded the Falklands/Malvinas for her and she was suddenly the new Churchill.

So just imagine how much good it would do Trump to have some bad dudes do some bad shit, to make him look like some sort of prophet/saviour. And now to stray firmly into the realms of the conspiracy theory, is it entirely impossible that he and his team might try to engineer this? I mean, if it can occur to me, they must have game-played it in some darkened room somewhere, no? 

If I were a betting man, I would place some money on one or all of the below, which would cover all sorts of Trump bases.

  • A dirty bomb made from Iranian-supplied fissile material = so we can totally ditch Obama’s attempts to keep a lid on Iran’s nuclear missile development programme
  • Planted somewhere on the West Coast, apparently Calexit is a thing, i.e. a Californian secession = take that you pot-smoking liberal judges, oh and hopefully take out a few speechifying Hollywood types
  • Planted by a Syrian/Yemeni asylum seeker = I told you they were bad dudes

I would obviously genuinely love to be proven wrong on this but just in case, I would like to get it down in writing and out on the internet, so as to be able to bask in the most unsatisfying “I told you so” ever, as I stockpile peaches in syrup and read up on “butchering your own sheep” to await the long night that awaits us. 

Buenas noches señores y señoras…

It’s beginning to feel a lot like Christmas…

img_7629…jingle, jingle [a cacophony of wrenching gears, screeching brakes, scratched vinyl and an untuned radio a la intro to Pink Floyd – Wish You Were Here], Honk! Parp! …2016, eh? What a year!

For is it not the season when a retrospective comes to us all, whether in the shape of a round robin Xmas card or some sort of blog round up? I keep getting “Memories from Facebook”; mostly my own blog posts, so I get to relive our moments through the years. I have been blogging for quite a while now and I seem to have established some sort of a tradition of a year’s end blog post. I recently got one where I was saying “AJ seems to be having some sort of a problem with her head but it probably isn’t anything”, innocent days, innocent days.

So anyway, 2016… Well apart from Bowie making a strategic exit right at the start, us Brexiting into the void, Colombians voting against peace, yer man Trump getting elected to be President of the United Sates of America, oh for god’s sake, that still looks ludicrous, Leonard Cohen shuffling off, Prince! Prince!! [sad face] Aleppo… Aleppo… jesus christ, Aleppo, we have had a pretty crap year as a family. Mum had cancer, she made a complete recovery, but still… and my dearest, and last uncle, Nin, died. On the plus side, in the geopolitical arena, the Austrians didn’t elect a Nazi, they almost did, but they didn’t, so that’s great, yeh! While on the home front,  AJ can count to four in French apparently  (she hasn’t done it for me), and errr… she has just got some really nice red shoes. You win some, you lose some… and then you lose some more, it would appear.

I would love to be wrong but I really do think that we have just lived through a year that will echo through history, a kind of 1066, 1492, 1789, 1914, 1917, 1933 sort of a year, a year when things changed. Even when these changes might have had some benefits in the long run, they are very rarely much fun to live through at the time. A French Revolution may have ushered in many of our concepts of modern democracy but it did involve a lot of heads being chopped off at the time.

But my complete fear is that in the face of catastrophic climate change, which is a truly existential threat to us as a species, we will be dicking around with totally inconsequential issues. So in 1914 they all trooped off to what was a horrific slaughter on a global scale but by the end of the affair; female suffrage became inevitable and the process of decolonisation had begun, so that was all good, it did involve the deaths of millions of combatants and civilians but some good came of it (obvs, I am avoiding, the whole “…and the rise of Fascism/Nazism across Europe” angle). But at this time, the participants were not facing a separate threat that they needed to deal with together.

Let’s imagine the best possible scenarios that the 2016 clust*r fu*k (I hope my strategically placed asterisks avoid your blushes) leaves us with. Let’s imagine that the UK leaving the EU does not lead to the disintegration of the EU thanks to the rise of other anti-EU forces in European countries, and let’s imagine that this does not lead to war between France and Germany, which has been the historical norm across the centuries. And let’s imagine that having a US President whose campaign benefitted from Russian hacking and who has just appointed the CEO of Exxon and friend of Putin as Secretary of State does not mean the forced reintegration of states from the Ukraine to the Baltic into some reconstituted oligarchic Soviet empire.

Let’s imagine these things and let’s focus on how rosy it might all be, maybe Brexit will only mean years of negotiations with bureaucrats over the minutiae of trade laws and agreements. It might mean that, hooray, we get some sovereignty back and we get to decide just which immigrants we want. OK, in the end we will probably need roughly the same number of immigrants per year as we are getting at the mo but hey, we will be in charge of exactly which immigrants we get to allow in. And a Trump presidency might mean little more than US democracy being dragged further through the mire than it already is. My guess is that after Republicans having tried to invalidate the Democratic presidencies of Bill Clinton with the attempted impeachment for sexual peccadilloes and Obama with the whole Birther thing, the Democrats, with no control of either house, are going to fight dirty. They have little to lose. And frankly you are not going to have to dig awfully deep to find the dirt on The Donald. (a word in your ear Donald: you are far better off as a populist having the army behind you, vis The Gracchi brothers, Robspierre, Mussolini vs Augustus, Napoleon, Franco/Pinochet/Perón, the last lot tend to die in their beds)

So best case scenario… We avert global conflict but we expend all of our political resource on what I called, and I do apologise for my language, “dicking around”.

I don’t claim to be any sort of expert on any science but, and I know this is the age of the anti-expert, 97% of scientists involved in climate change think it is happening and it is caused by the actions of humans. Moreover, the people who know about this stuff think that the pace at which global warming is progressing will make this planet uninhabitable for humans within the lifespan of our grandchildren.

So, in reaction to what the experts think,  we essentially have two options:

  1. to say “Oh bollocks, what do those people who have spent their entire lives studying and questioning climate change know about climate change?”
  2. to go “aaaaaaahhhhhh, we are all going to die, fuck, what can we do about it? Let’s not waste too much time dicking around worrying about whether Russia should invade Latvia (they shouldn’t) or whether Trump is a misogynist pig who shouldn’t be allowed to walk free, let alone hold the highest elected position of the known universe, (he shouldn’t). Let’s park all of that for a moment and all get together and focus on “not destroying the only planet that we, as species, can currently inhabit.”

Oh, Ok, I do realise that my political solutions can be somewhat simplistic at times. I have always advocated a middle east peace plan that ran along the lines of “Just chill the fuck out, OK!? Both of you, give it a rest, alright?! OK, cool, so that’s settled then?”

And I really don’t have any idea of how we get ourselves out of the quagmire that we are currently in. Let’s think about Aleppo and by the time I post this post, it might be too late to think about Aleppo. We haven’t got involved in Aleppo because of the string of disastrous interventions “The West” have got involved in, in the area over recent years. And not only that, Aleppo is being wiped out not just by the local potentate, who “The West” could feasibly eradicate like a Saddam or a Gaddafi, Aleppo is being wiped out by Russia and that is a completely different ball game. And that’s the quagmire that the eastern portion of a middle eastern city that hasn’t had a global importance since the crusades presents us.

And how many more quagmires do we face? Obviously all of the below are completely inflected by my own bias:

  • Do we fight Brexit for all we are worth even though it is “The Will of the People”? Even if “the people” would feel utterly betrayed if a cabal of the liberal and political elite plot to stymie their “will”?
  • Does the apparatus of the US constitution clunk into gear to invalidate a Trump presidency through fair means or foul?
  • Do we impose what will be viewed as censorship on the internet in an attempt to combat the post-truth age? (fyi: we probably don’t have the tech to do this even if we wanted to)
  • Does the left need to get over the identity/political-correctness agenda in order to focus on the fundamentals?

So those are my biases, my worries, none of them have much to do about whether my car is electric (it isn’t) or how  much I recycle (I do my best… I try, I really do… But, you know, how much good will it really make…? I have a busy life… It was only a yoghurt carton… It was probably not even recyclable… That’s the corporates, that is, why can’t they make things recyclable…? …bastards!)

I probably shouldn’t but I am going to post all of the above as a post. On a personal level, I too have had a bit of crap year professionally.

…but this is a blog about Ava-Jane and in all of the above, I have hardly mentioned her at all, so if you have made it this far…

…she’s great. She is the funniest person I know and I know some fairly funny people.

If I have been working hard and feeling stressed, there is no better way to recharge the batteries than having a cuddle with AJ.

Ava-Jane really is progressing with her speech. She understands so much more than she used to and is vocalising a lot. Even when she is not quite getting it right, she at least knows she is, which is, I think, a big step in the right direction. For example, this evening, she kept saying “me, me” and tapping on her knee, which we all knew meant that she wanted to sit on someone’s knee. But we all insisted that she distinguish between the “m” and the ‘n” sound before we let her sit on anyone’s knee. And when she did finally, clearly enunciate “knee”, with a really good “n” and everything, I asked her “yeah but how do you spell it? You’re not sitting on anyone’s knee until you get that weird initial “k” right.” (just in case anyone is reading this who doesn’t really know me very well, I didn’t really do this, I did joke about it but only when I was cuddling AJ).

So yeah, I should be wrapping up at this stage, it is late and there is only so far that a bottle of your Mum’s Rioja can get you. 2016 is appalling vs Ava-Jane is great; I know which I would pick. Oh and Otto, look at the picture for this blog. AJ is obsessed with Father Christmas , she has a Father Christmas doll and bangs on about “Papa Chri” as she calls him. But when Christmas comes around and she gets to actually meet Father christmas, she always completely freaks out, which is kind of a good thing, after all our troubles with our childhood heroes, it is probably not a bad thing that one’s daughter raises an eyebrow to a bearded old man bearing gifts.  In the photo, you can see that Otto is with her, holding her up with Father Christmas. This was at our Down’s Syndrome party and Otto was beside AJ the whole way through the party. Because of all her extra difficulties, even at a DS party, AJ can feel like an outsider, luckily for her, she has her brother by her side. I hope one day you read this Otto and realise how much I appreciate what an amazing brother you are for Ava-Jane.

Merry Christmas and a Happy New Year to one and all. Oh by the way, the Baxters are all off to Sri Lanka for Christmas, we’re OK!!

 

Advocating and educating (the long read)

I am republishing this one because there was quite a lot more that I wanted to say on the subject (as ever, I hear you cry!). I think that once I had got my Dad brag about Otto in and a cute picture of AJ, I just hit publish, without really finishing my point. So if you read the first bit, and you can be bothered to read a bit more of the same, just scroll down a bit and pick up later.

So after the Sally Philips led media blitz, this is my new mantra: advocating and educating. I think this blog has always been about making Ava-Jane visible, to begin with, when her life was in the balance, I wanted to make her visible so that, what might have been a fleeting passage on this earth, was remembered. But as she has got better, my blog posts recently seem to have been about life as a parent of and co-habiting with a person with disabilities. I sincerely hope that I have managed to convey that it is a richly rewarding experience, one that we stumbled into unaware and unprepared, but that has enriched us all.
Something that has come up again and again during this media blitz are the interrelated questions of what is the worth of a child with disabilities, what will they contribute to society and how much of a burden will they be on society.
I have often said that we have two children, one who lucked out genetically and one who didn’t. Otto is enormously good looking, caring, charming, able and intelligent, he has just passed his 11+ with flying colours (I had better get it out there now, that this blog post is really nothing more than a cheap vehicle for me to be able to be “Smug Dad” and broadcast that last fact over the one small loud hailer that I have). So ostensibly being Otto’s parent is easy, he is the kind of kid a prospective parent would want to have. You wouldn’t screen him out. But what’s to say that he doesn’t grow up to be a murderer, an arms manufacturer, a junkie or a marketing executive? While he is as “normal” as you could want, he might go through life contributing little to society or being an actual burden.
Ava-Jane isn’t going to pass her 11+ and there are a whole load of things that she isn’t going to do but she is unlikely to grow up to be a murderer, an arms manufacturer or a marketing executive but she is going to make a lot of people happy.
So, yes, our lives have undoubtedly been enriched by having Ava-Jane in them and I would argue that Ava-Jane has had a positive influence beyond her immediate friends and family. You can take her to the pub as we did this evening and she has said hello to everyone there.
But if we were to go back in time seven years to be told that our unborn and unnamed baby would have Down’s Syndrome, heart defects, leukaemia and brain damage, would we have chosen to terminate? We wouldn’t have been losing Ava-Jane, we’d have been losing an unknown. So I think the honest answer is that we probably would have done, had we known all of that. And the world would have been without Ava-Jane; a poorer place. img_7538

One of the worries that this screening tests presents us with, is that what is an understandable decision to terminate at an individual level can be devastating at a societal level. An expression that both Sally Philips and Dr Tom Shakespeare have used is that a screen for Down’s Syndrome is a “canary in the coalmine” in that it could be a warning of things to come. What else will we be able to screen for in the future? As we saw in Iceland in Sally’s programme, screening has meant that there are no more births of children with DS there at all. Some might see this as a good thing, I don’t. But consider another thing that can be screened and has been for years: gender. “Do you want to know if it’s a boy or a girl?” A UN report claims that there are 117M “missing” women in Asia due to the favouring of male children over female, see http://www.unfpa.org/gender-biased-sex-selection

I think that the same argument between individual choice and societal effect applies here. I would be reluctant to condemn individual families in Asia from societies that favour males over females, with restricted means, having chosen to keep male children over female for economic reasons. Or families in China, constrained by the one-child policy, who believed that if you can only have one child, a male one would bring greater benefits. But the availability of that choice has clearly been atrocious.

Gender screening is obviously a simple test that has been around for years but what else have we got coming over the horizon? Going back to AJ and her plethora of conditions… Let’s say we knew that she had DS and we decided that, given our privileged situation, it was something we were happy to live with. What about her heart condition? Spotting her heart defect pre-birth is now possible, her condition is extremely common in people with DS, about 1 in 4, I believe. So maybe we would have said “DS, OK” but a heart condition that would necessitate multiple operations, “perhaps not”.

How about cancer? I don’t think it is currently possible to identify whether an individual will have an enhanced risk of getting cancer, but as our ability to analyse the human genome becomes ever more sophisticated, it is certainly a possibility. So what would we have done if we had been told that our child had a high risk of contracting a severe form of leukaemia the day after her second birthday? Dunno. If she had died then, the world would not have lost anyone of great “value”, she was young and had not achieved anything of “worth” and indeed society would have saved itself an awful lot of money. I hate to think what her treatment cost (btw, thanks to all UK taxpayers reading this, you saved her!) But consider another case of cancer that I am close to. My dear friend T, who contracted cancer about the same time as AJ at the age of 40. Now T really has contributed a lot, he has been enormously successful and brought joy to millions, he is the father to three beautiful children. What if his parents had been told that he had a propensity for cancer?

What do we stand to lose by having these choices available to us? What will we be left with if we attempt to iron out all the anomalies, the differences, the defects? As I said above, the world would be so much poorer without AJ in it. She might not be perfect but she certainly is scrummy.


(Photos courtesy of my aunt Paula once again)

I was going to steer clear of Godwin’s Law, I really was. I was just going to hit Publish again and totter off to bed. But we know where this ends, don’t we? This attempt to create a perfect child?  (I sound a bit like Jonathan Pie) Even if the idyllic eugenics of the early twentieth century that preceded the horrors of the attempt to create a master race later in the century might not be fairly compared to offering  a screening test that gives a pregnant mother choice, we do have reams of dystopian/utopian sci-Fi future fantasies that envisage a world where a perfect being has been created. And none of them end well.

So what’s the solution? …it really is time for bed.
ten top, gold-plated misliterature stars for anyone who can spot the deliberate spooning in of a Bob Dylan snippet in reverence to the great man’s recognition by the Nobel committee. Oh it was the “unborn and unnamed” from Masters of War.

Advocating and educating

So after the Sally Philips led media blitz, this is my new mantra: advocating and educating. I think this blog has always been about making Ava-Jane visible, to begin with, when her life was in the balance, I wanted to make her visible so that, what might have been a fleeting passage on this earth, was remembered. But as she has got better, my blog posts recently seem to have been about life as a parent of and co-habiting with a person with disabilities. I sincerely hope that I have managed to convey that it is a richly rewarding experience, one that we stumbled into unaware and unprepared, but that has enriched us all.

Something that has come up again and again during this media blitz are the interrelated questions of what is the worth of a child with disabilities, what will they contribute to society and how much of a burden will they be on society.

I have often said that we have two children, one who lucked out genetically and one who didn’t. Otto is enormously good looking, caring, charming, able and intelligent, he has just passed his 11+ with flying colours  (I had better get it out there now, that this blog post is really nothing more than a cheap vehicle for me to be able to be “Smug Dad” and broadcast that last fact over the one small loud hailer that I have). So ostensibly being Otto’s parent is easy, he is the kind of kid a prospective parent would want to have. You wouldn’t screen him out. But what’s to say that he doesn’t grow up to be a murderer, an arms manufacturer, a  junkie or a marketing executive? While he is as “normal” as you could want, he might go through life contributing little to society or being an actual burden.

Ava-Jane isn’t going to pass her 11+ and there are a whole load of things that she isn’t going to do but she is unlikely to grow up to be a murderer, an arms manufacturer or a marketing executive but she is going to make a lot of people happy.

So, yes, our lives have undoubtedly been enriched by having Ava-Jane in them and I would argue that Ava-Jane has had a positive influence beyond her immediate friends and family. You can take her to the pub as we did this evening and she has said hello to everyone there.

But if we were to go back in time seven years to be told that our unborn and unnamed baby would have Down’s Syndrome, heart defects, leukaemia and brain damage, would we have chosen to terminate? We wouldn’t have been losing Ava-Jane, we’d have been losing an unknown. So I think the honest answer is that we probably would have done, had we known all of that. And the world would have been without Ava-Jane; a poorer place. img_7538

 

  • ten top, gold-plated misliterature stars for anyone who can spot the deliberate spooning in of a Bob Dylan snippet in reverence to the great man’s recognition by the Nobel committee.