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!
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.
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.
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:
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