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June 24, 2014

Sunday Bus Surprise

Last weekend I went to Britmum's Live, which is the biggest Mummy-Blogger convention in the UK (though now they also have food, style and dads. So maybe they should find a different description), which was what I intended to write about originally, and was also what I had plan on my "living life to the fullest" agenda. 
But since I had issues with the event, and not all of them were about the lack of cake (but seriously - not enough cakes is just... Mean), and since Sunday was one of those gorgeous sunny days you just know are too good to be true (and sure enough it did rain on Monday), we decided to forsake the original plan of staying at home lazying around, and started looking for something fun to do with the kids. Contrary to popular opinion, London isn't a very child friendly city, and it is not very easy to find something new to do with children in London every weekend, and if you want it to be cheap (or free, but nothing in London is ever free), it becomes almost impossible.
But this week we were lucky and it only took us less than an hour to find an adventure - the Bus Cavalcade on Regent Street. As it turns out, this is the year of the bus (seriously) and they have decided to close down Regent Street to traffic and put about 50 buses ranging in age around it for people to appreciate how far buses have come.
Year of the bus
We found it through Londonist, which is the best website I know to what's going on in London if you are a "young professional", or as we call them - children over the age of 25. We didn't find out about it through the TFL, who sends me five emails a week about the state of Hammersmith Station (don't care, not even close to here) or the Transport Museum, who sends me an email every time there is an open day at one of their garages. No, amazingly enough none of them thought that it was a good idea to advertise their own cavalcade.
Though the chronological order of the buses was intended for people to start walking from Piccadilly, we decided to go the other way - from Oxford Circus to Piccadilly Circus because chronological order or not, as far as I'm concerned there is one simple rule to walking outside - going down the hill is better than climbing up. So we went back in time, but we did it while rolling gently down Regent Street. 
Our first bus - in the future
Last bus - a carriage from 1829
So what do you do in a bus cavalcade?

First of all, you get a map, or five, because maps are an all important tool when you want to know where you are going, or when you want to distract an annoyed (or annoying) child. 


Then you stop for a snack, because the map thing didn't work.
Then you shout "go stand by that red bus" and see them look at you in confusion (we didn't really do that one, we told them the number of the bus we wanted to take a photo of). It is a known thing, after all, that photos of buses are boring and annoying. But photos of buses with kids next to them? Now that is interesting. I took over 250 photos on Sunday. Of buses with kids.


Then you let them drive the bus. Because they really really wanted to, and not at all because you want to drive the bus. Hmmm.


You make them do weird facial expressions and activities, so you can take even more photos (and embarrass them. After all, that is what parents are for).

Then you send them up and down the bus, because it is important to let kids enjoy themselves and experience the world through play. Not at all because you hope they get tired enough when you get home they'll forget you promised them a game of Snakes & Ladders.
Then you regret everything you just did because the "I'm hungry", "I'm tired" and "I want to go home" whining marathon begins.
That is when Pret and lunch came to our rescue, and we used this lunch to let Ron go buy his sandwich by himself (picking, paying and eating all by himself). In a busy Pret in the middle of Regent street, I am not sure who was more nervous about that (Hidai. Hidai was).
After lunch (a short affair, about thirty minutes for eating a sandwich) you have another short grace period in which you could do all of the above steps again...
And if you are lucky you'd get a not-so-grumpy-family-photo
And a selfie
And even a nice sibling one


Then you quickly try and take a photo of a bus stop made out of lego, because it's just so cute.


It took us four hours to go through Regent street, and for the first time ever we did it without buying anything (it did help that the queue in front of the gift shop was huge and that we flatly refused going in to Hamley's).
And yes, they did forget about the Snakes & Ladders. 
We watched Men In Black instead.

June 18, 2014

Asperger

They lead us into a bright room and invite us to sit on uncomfortable chairs arranged in a circle so it's not so formal, after all we're here to "chat", and it all feels so surreal. They look at us, and start scribbling. What are they writing? There are three of them, who do I look at? Why is it so bright in here?
Do they think a bright light makes getting bad news easier?
They are all polite, and kind, and talk to us in that voice that makes me feel like they think I'm an idiot. And they all keep looking at us and writing.
Is this a test to see how we react? How does one reacts?
How are you supposed to react when they tell you "and this is why we think JonJon is on the spectrum, and has Asperger"? What is the right way to react?
We argued with them.
Typical Yon
This is what it all came down to - five years of wondering, a year and two months of waiting for the assessment and finally five meetings in the last four weeks - those three little words. Yon has Asperger.
Because having Ocular Albinism and being partially blind isn't enough.
So we told them they are wrong. He has "blindism" which is due to the fact that blind (or partially blind) people have some traits that you also find in people with autism. Besides, it is a known fact, we told them, that everyone is on the spectrum and that there is a tendency today to over-diagnose. And lastly we told them he is getting better - a year ago he was so much worse, so if he has gotten so much better in the span of a year, maybe this time next year he'll be even better, maybe next year he will be "normal".
On the way to the last assessment
We came into that bright room prepared to hear he is on the spectrum, and we came prepared to fight it tooth and nails. We were ready for this argument, after all we have the winning card - Yon's vision. How much do we really know about what goes on in the head of a five years old who is partially blind? How much does any of us really knows about blindism? not much, which is why you can feel comfortable in saying that it affects most areas of his life - food issues, routine issues, gross and fine motor skills, inability to stand in the queue, needing to explain everything that is going to happen in great details, noise and touch issues, and trust me I can go on. But then there are the things you can't explain with his vision, those same things that got us to that assessment room in the first place, those things that made us look at him and wonder. No amount of trying could make us relate his communication problems, his social issues or some of his behaviours to his vision. Believe me, we've tried. And then there are the things we didn't even know were a problem - his ability to do the same activity for hours, his tendency to quote word for word movie scenes, his playing imaginary games with himself but not with others, to name just a few.
During the assessment
They never argued with us, they nodded and said "of course, you are right" to everything we said. They just kept on going, listing more and more things that Yon does, things they saw and things we and his teacher said, and with every thing they said we nodded and said yes. With every thing they said our arguments got weaker, the room became brighter, and our hearts became heavier, it weighs a ton, that one word - Asperger.
It wasn't that it came out of nowhere, that we were blindsided, it wasn't like that word just "fell" on us without being prepared. In the last year and a half we've made so many changes in our family-life to fit it to Yon, we didn't even notice how much we accommodate Yon's needs until they actually said that there is nothing else they can suggest we improve. No, it wasn't the shock or the "how did we not see that" or even that it took more than a year to get to the final and official diagnosis.
We needed that time to come to grips with the albinism, we used that time to make so many changes and improvements to his life and ours, we were ready for it now, which was not the case last year.
And yet it weighs a ton. All of this somehow makes it worse. We hoped, really really hoped that all the improvements and growing up Yon made meant we've tipped the scale and he will be on the other side of the border, because yes, while it is true that we are all on the spectrum there is still a line, a border that devices those who get the diagnosis and those who don't. Oh, how we wanted him to "just" be weird & eccentric.

It is not the shock of hearing something you didn't think you'd hear, it's the finality of hearing the words out loud. 
It is the fact that it is no longer "YonYonism", it's Autism. It is that I still feel like I did last April when we started down this road - I blame myself. It might be stupid, but these are our genes that are causing this, all of this. We are the reason that he starts life at a disadvantage, that he will have to fight more, overcome more, be Special. We are the ones that are supposed to give our kids the best start to life, the best options and opportunities. We are supposed to protect our kids from all bad things. We failed him. Twice.And it is that there is just something so darn sad about this last official stamp.

June 16, 2014

Mammoths exhibition

To celebrate Father's Day, and not at all because it was cold and damp, we decided to take the kids to the Natural History Museum to see their new Mammoths exhibition.
Truth be told I am not a huge fan of the Natural History Museum. I am purely an arts person, so stick me in any old "regular" museum and I am happy, but all these dead animals and weird plants and facts about nature? Not my cup of tea.
Add to that that Yon is not an easy child to take to a museum, and that Ron (like me) is not a huge animal-life fan.
And let's not forget the 100 pound rule - I found that whenever you leave the house in London it costs a hundred pounds. How when the museum is free? Well, first of all though the museum is free the exhibition itself costs money (26 pounds for a family) with the mandatory gift (I know it's not mandatory and yet somehow we couldn't resist the sitting mammoth) which ended up costing about 30 pounds and lunch (another 30 or so) and transport - and that is how you get to the magic number.
But it was Father's day, and we are on a "enjoy life" quest, and it looked like a great exhibition from the video. So we figured - why not?
It might seem like something you do spontaneously, but around here outings are never spontaneous - tickets have to be bought in advance (especially since we've seen the queue to the dinosaur exhibition last year), routes have to be planned (how do you get from the tube to the museum), food has to be prepared (never leave home without a snack, and make sure you know were your lunch is going to be), anticipate every problem you can (did you notice that museums are so very dark?) and always leave the house with some extra time to allow for whining and slow walkers.
So after so much preparation and thinking, it really shouldn't come as a shock that -
Of course the kids were misbehaving from the moment they woke up.
Of course we discovered Ron still has homework he was supposed to have finished during the week.
Of course we were late for our time slot. But just by two minutes.
Of course the app advised to go to the wrong tube station, which incidentally was also closed.
Of course Yon went into hyper-mode because of all the things he could touch.
Of course there was an emergency somewhere in the museum.
Of course the Pret we chose for lunch was packed with people.
And of course I came home with a headache, Hidai got a mammoth for Father's Day and the kids concluded it a success.

And it really was a success.
I love the fact that the museums here are so child-friendly, and most of the exhibition was of things you could actually touch. For Yon it was like heaven. Ron enjoyed the huge amount of written materials, movies, and demonstrations carefully arranged around the room.
There were plenty of places to stop and sit around the room (unlike in the London Aquarium) so we could take some much needed regrouping breaks.
It wasn't too big - we were there for about an hour and a half including breaks, snacks and the gift shop. Really the perfect amount of time.
Though it really was dark inside (I honestly never noticed how dark museums are before Yon) it didn't feel so bad, and even Yon didn't get into distress.
The exhibition itself is really good. My photos are less so, mainly because there was a "no-flash" policy to which we adhered.

There was a sign "please touch" everywhere, which Yon really enjoyed reading
A sabre tooth cat (or Diego for those who saw Ice Age)
Yon took about 50 photos on my phone in the first 10 minutes we were there, before he discovered the "please touch" sign. 2 were in focus. None made the cut.
Touching mammoths

A very nice lady even offered us a family photo with an elephant. As one does
Can you handle a trunk? Ron could :)
The best preserved baby mammoth in the world


June 9, 2014

Thames Cruising

I want to tell you that yesterday was well planned in advance, and that we looked at the weather forecast and thought to ourselves - hey, it is supposed to be sunny on Sunday. What should we do that will be fun for the whole family? And came up with the idea of a Thames cruise. But what really happened was that I woke up yesterday morning fully intending to bitch the day away. It might have had something to do with the fact that I went back to the Weight Watchers & exercise regime I so gladly abandoned a few months ago in favour of constant cake eating and excuse telling.
Hidai, who dragged me out of bed after he got tired of hearing me complaining about the worthlessness of my life and the cruelness of the world (I honestly don't know why he got tired of it, I am a very good complainer. It's one of my stronger qualities) decided that leaving the house was in order, and because we looked outside and saw that it was, indeed, a glorious day and because we've been trying to go with the whole "live life to the fullest" thing we immediately thought about spending the day in Paris. Since 700 pounds in train tickets seemed a bit on the extreme side, we settled on crossing another one of those London touristy things off our list (I love being a tourist in London. Sometimes I think I like it better than living in London, but that is for a different post) and so we booked tickets on the CityCruise circular cruise - they did promise 45 monuments in 45 minutes, and it costs only 23 pounds for 4 people, so looked like the best choice for us. After all - Yon can't see most of the monuments and Hidai doesn't like being on water.
To counter the fact that Yon won't see or care about any of the monuments we offered he dress up as a pirate. Obviously we meant the hat. Obviously he meant the whole ensemble. And so we found ourselves rushing through two tubes and the tower of London with Jack Sparrow and his slightly embarrassed older brother, much to the delight of everyone who saw us.
We managed to get to the docks on time, which for some reason is always really difficult on weekends, and found a spot at the front of the boat which was lucky because the cabin provided some shade for Yon, at least for part of the way. Pirates hats, though dashing, are not really good for shade-creating. At least I remembered to put enough suncream on them to make sure they return home in the same condition they left, and not turn into a tomato.
We have enough tomatoes at home right now with the whole Weight-Watchers thing.
They did enjoy it, The crew gave a very funny commentary and the visibility was great so I managed to take what I thought of as a few pictures of everything. When I got home I found out it was about 270 photos, but that could still be counted as "a few" right?


And we even got a family one!
Yon was interested when we passed other boats
Look how skinny I look :)







The boat did go all the way to Greenwich but the boys had enough just going from Tower Pier to Westminster and back, and also we might have been a bit hungry and Ron still had homework at home to get back to (oh, the joy of learning not to postpone things so you could play a little bit more of xBox), but since the day had been going on so well we decided on Pret for lunch (how sensible and diet friendly of us) and a bus ride to St. Paul, which was obviously mostly closed because it was Sunday after all, but we still got to see the entrance hall and realise that as much as the kids have grown and are easier to travel with, they are still not ready for churches.
You have to now your limits I guess.
In PrĂȘt 



It was a great day out, and though I have to say I usually prefer London grey and cloudy (that's the way it should be in my mind) from the river there is nothing like a bit of sunshine (and half a brownie at Pret) to elevate a person's mood. 

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