Sodding Brexit!

DSC02167

I am adding this cute picture of Ava-Jane not because it is particularly relevant to this blog post – it isn’t – but she does kind of look like she is saying “Why the hell are you fretting over Brexit? Look at those clouds, it is about to chuck it down and this clown is taking a photo of me!”

The title of this post might betray the fact that it isn’t going to be one about “Hey check how cute my daughter is!” nor “Living with Down Syndrome/Hear Defects/Brain Damage… Yeah… And?” Nope, this is is going to be one from a sporadic series from me of the “What the Fuc* were you thinking?” genre and in which the “sodding” of the title is but a vague sop to the more genteel amongst my readership and everyone really knows I would rather be using a far ruder word.

So has anyone actually read Boris Johnson’s 4,200 word piece in the Telegraph this Saturday? Well, I have! The newspaper delivery gods, (and I do not doubt that such immortals exist) contrived to deliver only the main part of the Telegraph to me this Saturday. I only get the Telegraph on a Saturday because I really like the crossword. So I do the crossword and burn the rest – it burns better than the Guardian/Observer because those weird twins who own the paper and live on a remote Channel Island scrimp on ink… presumably to save money to reinvest in building a throwback medieval micro-state. But I digress…

So anyway, I received a copy of the Saturday Telegraph shorn of the one section that I actually wanted but laden with the wisdom of my childhood chum, dear Boris. Dear, dear Boris. So, yeah, I can’t claim to be some sort of warrior whose hatred of Boris emanates from the envy of class warfare. We are old friends of the Johnsons  – we knew them from when we all lived in Brussels… Yes Brussels.  We went to the same prep school, I am a bit posh too. But… But… I can recognise an enormous self-serving knob end when I see one. And that is what dear Boris is.

So if anyone has been paying attention to the news recently, picking your way through truly important stories and tragedies of hurricanes and earthquakes, you will have seen that out Foreign Secretary, the holder of one of the three great offices of state has opined on Brexit.

However, I imagine that only the saddest amongst us will actually have read the full 4,200 words of the article. I’d like to think that I have taken one for the team by being one of those who has not only read the article but also annotated it. Tragic, I know!

So the media have widely reported and debated the fact Boris has revived the most popular Brexit lie about there being a weekly bonanza of £350 million coming our way post Brexit, which would be spent on the NHS. The details of this have picked apart by luminaries but it boils down to: it’s not £350 million and whatever it is will probably be spent on keeping our heads above water in a post-Brexit wasteland not on dialysis machines. (Ooooh I can spell “dialysis” without the aid of spellcheck!)

So if that was the main headline crap from his article what other nuggets of crap, dags if you will, have I been able to glean from my close reading of the Boris oeuvre (OK, I fess up, I needed spellcheck for “oeuvre”).

Johnson’s (and here I stand with the New Statesman podcast in trying to stop calling him Boris – he is not everyone’s chum!) main thrust is a quite frighteningly nationalistic argument where Britain is somehow greater than every other country in the world. I have heard this “greatest country” thing from people from many countries. This simple fact shows what a ludicrous and dangerous thing it is to say. No two countries can be the “greatest country” and in any case, what metric are you using to measure the “greatest country”. If it is “greatest at being British”, then yes Britain is the “greatest country”. There are plenty of reasons for being proud of being British but none of them derive from thinking oneself superior to anyone else.

But anyway… Let’s get some quotes in to see how Johnson’s arguments make no sense whatsoever even on their own terms. For example, and I will type out exactly what he wrote as he wrote it (He has been accusing journalists of just reading the headlines):

…this country still has chronic problems and at leat some of them have been exacerbated by the rigidities of EU membership – and certainly by the way we have chosen legally to apply those obligations.

Our infrastructure is too expensive – and takes far longer than France or other countries.

OK, so this guy is meant to be the great wordsmith of this government, the risen Churchill. Johnson Major: what do you mean our “infrastructure takes longer” What… to build? …to travel along the Tory privatised train lines? But apart from the fact that your English makes no sense, how come these rigidities hamper us so much but not the French… long-term EU members? WHAT!!!??? Explain yourself, properly.

And then, not three where-has-it-all-gone-wrong paragraphs later, we have:

The result of all these failings (none actually EU related, ed.) – over decades – is that we have low productivity: lower than France or Germany.

FML Johnson! FML, honestly? How much has been spent on your education over the decades? You fucking quote Cicero… Could you really not think of two countries other than France and Germany to make the point about how the EU stifles productivity? I mean those two, literally are the EU. Couldn’t you even think of countries that nobody really knows about, like Estonia, or maybe one that has been genuinely screwed by the EU but is quite classically European, like Greece. Or how about Singapore and Chile – both productive, both a long way from the EU?

And on it goes. He blames EU citizens for the high prices of housing in London as if this might have nothing to do with assorted Russians, Saudis and whatevs. He thinks that we could seize the opportunity of Brexit by “reforming our tax system” (= cutting taxes for the super rich and corporations) without mentioning that our neighbours on the Emerald Isle have been doing this for a while now and their economy tanked even further than ours in 2008. And while I am sure that each individual Luxembourgeois is doing very well thank you. This is not because they are outside the EU – they aren’t! – it’s because there are about seven of them and that’s if everyone is home for the weekend. So if we could reduce our population by approximately 64,999,993 people, we too could do very well by turning ourselves into a tax haven in hock to the great god Amazon.

But the worst of it is the Poundland nationalistic tripe that Johnson comes out with, the “to put Britain in the lead”, “Look at our universities – the best in the world”, “We have more international visitors than any other capital, including Paris and New York” (Boris, you numpty, everyone knows that NYC isn’t like actually the capital of the US. OK, so what’s the capital of Australia? Sydney or Melbourne?)

I think that we all know that Johnson does all of the above and espouses all of these opinions purely for the advancement of Boris Johnson. Recently we have been in thrall to his own personal blonde ambition but for decades now the tories angst over Europe has buffeted us from one side to another. One could argue that every leader since Alec Douglas-Home has been jettisoned for a European-related issue, that’s if one gave a damn.

But it is all so non-sensical, who actually cares? Bhutan registers off the scale on various happiness registers and Scandinavian countries are the go-to exemplars for all sorts of how-to-run-a-country ideas and they haven’t been world beaters at anything since they buried Harald Hadradr at Stamford Bridge.

And so if Johnson’s schtick is that Britain should be somehow great, important and relevant, can anyone tell me how we are showing our “greatness” nit-picking over irrelevant trivialities? Couldn’t we be exerting influence on our special relation to draw them back from nuclear armageddon or how about “putting the ‘Great’ into ‘Great Britain'” by leading the planet out of its spiral into climate catastrophe?

I know that I am peculiarly European and this all matters more to me than it does to many of my fellow Brits. I know that the EU is far from perfect but the key questions I asked to anyone who would listen pre-referendum were:

  • Is it really that crap? Is the EU really so crap that we need to spend every ounce of our political energy for the next five years or more disentangling ourselves?
  • Is the grain of liberty we will gain of political freedom worth the beam of every kind of freedom we abrogate every time we enter our details in an online form.
  • Have we really “regained control” by leaving the EU when there are various multinationals that know more about us than our own spouses and pay only what they choose to pay into our national coffers?

What really worries you on a big scale? Climate change – these storms we are seeing are not caused by climate change but they are exacerbated by the way we have treated the environment. International terrorism? Trump? I mean Trump… I know he is not our President but he could very easily kick off a nuclear war.

Is any of the above solved by Brexit?

If you have made it this far please listen to our podcast. Otto and I have just done a guest episode on the History of England, I am very proud of that!! We also have our own website.

Advertisements

Having fun raising funds

DSC02117

So last weekend we were manning a stall at our local Farmer’s Market in order to raise funds for the North Bucks Downs Syndrome Group. This is a very fine group indeed. Not to be confused with the South Bucks Downs Syndrome Group who are all together more la-di-da and from places like High Wycombe and Beaconsfield while we are from the other side of the tracks, the mean streets. We do, however, bake.

But seriously this group has been such an important part of our lives since AJ was born. Alison and Sarah in the pic above welcomed us in and and have seen us through all sorts of hard times. I have always felt that Down’s Syndrome is really not a problem. AJ has had so much else thrown at her that one more little chromosome is very much the least of her problems. I am sure that our NBDSG can take a lot of credit for me feeling this way. They are just a lovely bunch of people to hang out with who have great kids. See below for AJ boogying with Niamh and getting amorous with Christopher – she’ll do anything for a man with a Spotty Bag!

One of my favourite NBDSG anecdotes is from Otto after one of our first away days with the group. Otto played with Thomas who is a couple of years older than him. Otto was absolutely delighted that a big boy had played with him and said “Thomas is six and he played with me and I haven’t even got Down’s Syndrome” (meaning: he played with me even though I am not part of the gang).

Thanks all, we don’t do nearly enough to support the group but we really enjoyed Saturday.

Summertime and reunions

So as a blogger you’ve got to have your regular blog posts – your birthday posts, your year’s end posts and so on. A holiday post has also become a staple. This year’s holiday post is more of more of the same than most given that we went to the selfsame place in France as we did last year. But we figured that it all worked so well last year that we would do it all again this year. It consists of a somewhat stressful stage of packing a load of crap into our car plus ourselves, crossing the channel by one of various means, driving through France taking the odd wrong turn, Fo and I shouting at each other until Fo realised I was right all along (I write the blog – she can gainsay this point through her own social media channels should she feel the need) while the children sail through the campagne blissfully ignorant of either the rising tension between their parents or of the cultural treasures of France that they are missing with heads stuck in their iPads. Then we arrive to copious wine and fromage and all is good in the world. Love is in the air entre Monsieur et Madame Baxter, there’s a swimming pool – what more could you ask for.
The only slight difference this year is that on the way home for our history detour we go to Orleans rather than Saint-Malo. For those of you following the history podcast I am doing with Otto you will be getting our live/not live episode about Joan of Arc and the siege of Orleans… soonish.
Sadly the weather was not so great, so we couldn’t spend quite as much time in the pool as Ava-Jane would have liked. The conversation goes like this:
Parent: shall we get out?
AJ: No!
Parent: but you are blue and shivering.
AJ: more wim pool!
She tends to win these exchanges and to be fair to her she has not, to date, contracted pneumonia.
Less time in the pool did mean we had a little more time for exploring, which I love. Fo came up with a classic – Chateau Blasé. This is the chateau that you drive straight past because it barely has any turrets and everyone except dad has long had their fill of chateaux.
Beyond that there is not much to tell other than of waistlines driven ever outwards thanks to the French knack of putting butter and/or creme fraiche in every course from your moules to your crepes and in each of breakfast, lunch and dinner. Merci mes amis. With Brexit looming, we thought it wise to pack every nook and cranny of the car with wine, even though we decided, in the end, not to jettison a kid in order to fit more in. How long will we be able to continue doing this? Come March 2019, will it be back to an allowance of two bottles of wine as it is with the rest of the world? How can a decision that stops you ramming your car with plonk be anything other than a stupid f*cking idea? “Taking back control”, my ar*e! (I do hope the more sensitive among my readership appreciate my strategic use of the asterisk to spare your blushes. I hope that my profanities are entirely unrecognisable to your innocent eyes.)
Mini-rant over. But this summer, for me, has also been about reunions after many, many years with people who have been a massive part of my life.
First we had the visit of RoRo – I am not yet fifty so I can still call her RoRo and not sound like some kidult suffering from severe arrested development, my brother Toby, on the other hand, who is past fifty would just sound weird!! RoRo looked after us when I was three, so not recently! She came with us to Brussels and was a very important part of the family. My mum has stayed in touch with her and was in touch with her parents too but this was the first time I had seen her for years. It was great to be able to introduce RoRo to my own children. Oh, BTW, she is actually called Rosemary, and rereading this paragraph I realise I probably do sound pretty strange.
wRoRo_1401
Next reunion was with Jakob, see below with gorgeous daughter Malaika. When I was eighteen I went to Argentina to work for the Baron and Baroness von Plessen to teach their son English in Argentina. My official title was “Private Tutor” but essentially I was an au pair – my teaching was very unstructured, it mainly consisted of playing around with Jakob, who was only ten years younger than me, and riding around on horses. Luckily Jakob was a bright kid and he picked up English pretty smoothly – he already spoke Spanish and German.
The year I spent with the von Plessens was an absolutely formative part of my life. It was where I first learnt Spanish. I was picked up from the airport by two gauchos, I didn’t know a word of Spanish at the time, so they taught me words for the things we could see out of the car window: horse, cow, tree (caballo, vaca, arbol), by the time we got to the house five hours later, I had these words pretty well learnt given that there is nothing much else to see on the pampa other horses, cows and the odd tree. It was here also that I had my first teaching English as a foreign language job, which would become the career I have followed in one way or another ever since.
So when I was sent to Buenos Aires for work, I decided to add on a few days to see if I could track Jakob down. I make this sound more of an adventure than it really was – he is on Facebook. It was great to meet him after thirty years and to see that he has grown into the adult he always should have been. He came to spend a summer with me in the UK when he was eight. We arranged for him to meet some Brit kids of his own age and he told them he had shot a wild boar, they naturally thought he was making it up but it was quite true. Jakob has continued to live on the wilder side of life. He organises horse trekking expeditions in Patagonia and Kenya and has broken almost every bone in his body tumbling off horses.
img_9822
The chap below, Claudio, has never been my au pair, nor I his! But he was Jakob’s tutor, and Claudio was a proper tutor, after I left. We met very briefly when he dropped Jakob off at mine the following year. But then a decade later, in what felt like a different thread of the space-time continuum, I was introduced to an Argentinian guy on the street in some fiestas in Madrid by our late and very lamented friend Donald. It took us a while to work out the connection but Claudio, being the sharper of us two, suddenly exclaimed “That Luke!!” And we became great buddies and did quite a few more fiestas round Madrid over the years.
Claudio was surprised to see me without a beard so it has been a good few years since we last saw each other. Luckily we pretty much picked up where we had left off the last time ours paths had crossed and did lots of chatting over cocktails, wine, massive steaks and dulce de leche pancakes.
IMG_9863
I do hope that Otto and Ava-Jane will stay in touch with all the lovely people that we have had here with us looking after them, the Boros and the Anders, Noemie and Jess and Emily who is here now. I think that it is such a special relationship, that bond between a kid and a young adult who isn’t a parent but is.
So all in all a very fine summer has been had so far. Great to come back to some British drizzle and know that things are as they should be.

Me eight!

It was Ava-Jane’s eighth birthday on Sunday. Her birthday is always very emotional as it was the day after her second birthday that we found out that she had leukaemia. So to have her with us, alive and kicking is amazing. And she is so alive and kicking, even kicking the ball into the net at times.

This year, we had three of her school friends, Tommy, Pearl and Bilaal over for the party. Otto’s school and friends are very local, we know them all and their parents but it isn’t the same with AJ. She goes off in her taxi in the morning and comes back in the afternoon and we don’t know the people she spends her day with in the same way that we do with Otto. So it was fantastic to have her mates round. You could see that she was so happy and comfortable with them all. They are all non verbal to a certain extent but they all knew each other and communicated. Pearl has got a knowing grin that seems to say she has an inner joke going on that we are all missing. Ava-Jane loves to hold hands with both Bilaal and Tommy, I don’t want to be some horribly stereotypical Dad but I think I might need to keep an eye on this going forward, especially as they were both sporting some pretty rakish sun glasses.

So, happy birthday to my little girl. I can’t believe you are eight. You continue to amaze me and bring me joy – keep it going my squidge.

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.