Dyay two in da big bruver house

There have been reality shows based on the most inane circumstances so I think that me, Ava-Jane, two equids, a labrador puppy just hitting the chewy stage and 40 odd sheep would have provided enough fodder for a couple of episodes. The fact that I say 40 odd sheep rather than giving a precise number says something. I know how many sheep we have of our own – 21 – but we are currently entertaining some guest sheep, so I am not sure what the exact overall count stands at, other than lots. But I am pretty confident on kid and a puppy numbers – one of each, which is the main thing. 

Of course I don’t know that Fo hasn’t rigged up some CCTV cameras to make sure everything is OK, so we may yet have some footage and be able to cobble something together. 

I think I am doing OK on the running the house bit, helped by the fact that Fo left extensive instructions for the house-sitters, so I have been provided with crib sheets. I am no domestic god by I can pretty much look after things even though I have been inflicted by a willy!

But looking after AJ full time is full on. Yesterday was quite hard until we got to the pub when everything started to go a bit better. Our village is a wonderful community and AJ is very much part of that community. So when we get to the pub, I know I can rely on Holly and associates to look after her in the garden. But AJ also gets taken off to the garden by our local senior army officer, who I am sure thought that I needed a break but also enjoyed hanging out with AJ. She does, as I have said, have that effect on people.

It is both a privilege and a joy being the father of someone as unique as AJ but it would be a lie to say that it was plain sailing. Kids are hard work per se and special needs kids even more so. In the normal run of things, you’d expect a five-year old to be able to entertain themselves for a while. But AJ can’t really spend time playing on her own. She has a tendency to chuck any toy she is playing with onto the floor, which is quite typical for kids with Down’s but given that she can’t then recuperate them, it means that she always ends up asking for her toys, then when you get them for her she sees an opportunity for a game and jettisons them again. Most of the time, when you are feeling patient and on top of things, you can go along with it but every so often it is really f***ing annoying!

It is good for me to have this time alone with AJ and I hope I am getting a better insight into her than when we are surrounded by the maelstrom of the rest of our lives. It is also a point of honour that I want to welcome Fo home with the house in some semblance of order. 

 

As you can see, it is quite hard to get a puppy to pose for a selfie!

This slideshow requires JavaScript.

It isn’t really day two, it is now day three. Mum, AJ and I went to Woburn Safari Park and AJ patted an elephant. 

 

 

 

 

 

 

IMG_2958

My hopes for bringing AJ along language-wise are proving to be quite ambitious. I just tried some banter over bringing the washing in. “What colour is the shirt? Are these mummy’s trousers?” that kind of thing. I thought she was doing really well, I held up one of my shirts and asked her “Is this Ava-Jane’s short?”

“No,” she said, admittedly with a bit of a West Country twang but as her “yes” is more of an “ah”, I thought “nor” was probably acceptable. 

Then I held up some of her trousers, “Are hese Ava-Jane’s trousers?”

“Nor,” she said, with an enormously proud and winning smile… 

“Bugger!” I said.

I should try to write more about Ava-Jane’s progress rather than make glib comments about what she can’t do. I know that Fo worries that I don’t write blog posts when things are going well. Aside from the example above, AJ’s general comprehension is advancing apace. She might find it hard to get things out but there’s a lot going in. I just read her a story that Fo normally reads – (hmm just found how to do an en-dash on my new mac book, should I change the incorrect hyphens above??) “Sleepy Me”, and she anticipates each page by finishing off the rhymes. 

Sadly I missed the event in the photo below – AJ’s first go in a walker. As you can see in her face she was immensely proud of herself. Apparently, she really got it and loved the fact that she could move under her own propulsion.

We have Boro to thank for much of Ava-Jane’s overall progress. As her issues are so complex, you can’t deal with them on an individual basis and though “holistic” is a word I would ordinarily recoil from, what AJ needs is a holistic approach. Getting to relax her right hand might well help her to form certain syllables that she can’t do at the moment. As the people at the Peto Institute said, encouraging to walk might not mean that will ever walk but it might stimulate other parts of her brain wholly unconnected with the act of walking but beneficial in other ways. 

 

 

AJ+walker

Richard Dawkins…

Oh go on, I have just poured myself another glass of wine and Match of the Day doesn’t start for another 20 minutes. http://www.theguardian.com/science/2014/aug/21/richard-dawkins-apologises-downs-syndrome-tweet 

So Richard Dawkins, lead tub-thumper of atheism, has said that parents who know they are going to have a child with Down’s Syndrome should have an abortion. He has apologised and said that given the restrictions of Twitter, he was not able to really explain his position – (hmmm enjoying these en-dashes) well, duh! don’t try to express yourself on Twitter, write a blog, where you can go on and on. 

As an atheist, I should be a big Dawkinsist, or should that be Dawk? But he really doesn’t stand for my kind of atheism, my beef with religion is its certainty about things that I think are very uncertain and to us are, at present, unknowable. Dawkins is, to me, just as much of an evangelist as any fire-breathing born-again Christian or fundamentalist Muslim. 

Telling people how to regulate their reproduction is an example of the worst of religion. I don’t think that parents who know they are going to have a child with Down’s Syndrome shouldn’t have an abortion, we discussed it and I can very much see how it might make sense. AJ is hardly an advert for an easy life but, oooh, Professor Dawkins, just you wait, don’t think that you can opine on AJ’s quality of life. Look at all the dysfunctional and deeply unhappy “normal” people there are in this world and tell me that it isn’t better off with this smile in it:

IMG_1716

There’s this amazing guy with Down’s Syndrome called, in one of those wonderfully serendipitous crossing of the ways – Otto Baxter, who posted the below on his Facebook page. Professor Dawkins sometimes you remind me of that religious bigot James 1st/6th (woooh, there’s a rant for another night – Scottish Independence) who was described as “the wisest fool in Christendom”.

  • Not sure @RichardDawkins knows what he’s talking about! My “welfare” is pretty good thanks.. #downsyndrome. @DSAInfo @sarah_gordy
     

 

 

 

 

 

 

Advertisements

What a summer… so far!

IMG_1867 IMG_2713 IMG_2765 IMG_2884

Yeah, what summer so far. I have had a reunion of my mates from Warwick Uni, a festival get-together with my Pony Club bunch, my brother and niece Molly over from Oz and some of us are just back from our road trip to the Lowlands and Highlands of Scotland. We decided that as our road trip to Hungary last year had been such a success that this was only way to spend a summer, so north we went. Our first stop was to see my sister and co in Nottingham, which if you are going to Scotland means you have barely got in the car. Mary sorted us out with cheap rates at her very plush hotel, pic below shows Otto and AJ enjoying the plushness. We then sorted her out with some tickets for our local Reggae festival (very annoyingly, there is an amazing Reggae festival in our village and we have never been!)

IMG_2834

Our next stop was to see Fo’s old mate Frankie, also and co, in one of the most beautiful setting imaginable. Then we headed North to drink rosé with a bunch of mates by fishing by a river. I was the annoying git who questioned whether, given the fact that we were not catching fish, could we really call it “fishing” and shouldn’t we call it “waving expensive sticks around”? Next we went to see my cousin Patrick, Rachel and Holly, who live in Lanarkshire and create the most inspiring pieces of wood ever!

The major bummer of the summer is that Boro is leaving us tomorrow. She has been a wonderful part of our lives for the past year. Ava-Jane has learnt so much from her and come on in amazing ways. Boro really understands the human body and has applied all her knowledge to Ava-Jane and has got her into a really incredible place. I am about to spend five days just me and AJ, so will be experiencing some of Boro’s reality for a while. Luckily we managed to convince Boro to stay with us over the summer. We used any trick we could think of: getting the kids to plead, showing her photo montages of the Highlands (she loves a wilderness), straight bribery and she came to Scotland too!IMG_2704

So I have got a few days on my own with the Aves – which should be instructive. Fo and Otto are in Austria. Otto declared, out of the blue, that he wanted to go walking in the Alps with his Grand-dad, which seemed a great idea all round. John’s parents first went to the Madrisa Hotel before the war when they skied on bits of plank and the Madrisa is a feature of Fo’s life. We passed by there last summer and Otto seemed to feel that he was a part of the furniture, partly because his name was inspired by one of Fo’s ski instructors (apparently of the weather-beaten unattractive type, in case you were wondering!).

So I get to spend some time with AJ, which is, quite honestly, quite “Gulp!” There is no time out when you are with AJ, she can watch an episode two of Something Special, but other than that, she needs full on attention. Now, don’t get me wrong, this is very fun attention, because it is impossible not to have fun when you are paying attention to AJ but it is intense. My hope is that by the time Fo and Otto get home in Tuesday, she will great them with “Hello Mother, welcome back Otto, I hope you enjoyed your time in Austria.”

…that is probably quite optimistic but I am going to concentrate on her language. I really feel that she is ready to take a big step forward there. She is very communicative and has her message very straight in her own mind, it is just that she can’t quite get it across clearly, so when you do finally pick up what she is trying to say, she is delighted!

So if I do get her walking or talking, I will update the blog.