May 16, 2015

Six months two weeks, and one ER visit

On Wednesday I started writing a post about how we've crossed the six months benchmark, which means we are officially not new here anymore. I wanted to write about how crossing this six months benchmark, silly as it sounds, really does make a difference. How there has been somewhat of a change in the air lately.
Everyone sees and feels change in different places, different instances in life. For me, I think it was last Sunday when I found myself sitting at this very computer typing a very long and detailed response (for some reason I can't seem to write shortly)... On Facebook. To a stranger. I just couldn't help myself. Now don't get me wrong, I like Facebook as much as the next totally addicted person, but actually participating in public discussions with, well, people who are totally wrong? This is where I draw the line. Until last Sunday it seemed. So I figured there can only be one explanation for something so strange - I miss writing.
Which in turn can only mean one thing - I have turned a corner. So I did the math, and sure enough - it's the six months benchmark. Also it's spring, which means sunshine (And spring coats, which I adore, but have no relevance here).
So I tore down the "Haven't cried in XX days" sign from above my little corner of tears (also known as the sofa in my bedroom, which doubles as the perfect place to watch TV and the weekend's breakfast corner), got on the treadmill (yes, I know, I'm a sucker for punishment) and sat down to write this post.
But I forgot the cardinal rule - Never ever write about how well things are going.
I know, it's crazy, but how else can you explain the fact that not two hours after I started this post, and was in the middle of writing a "we are adapting to life here" sentence I found myself in the ER?
I have no one to blame. Really, I brought it on myself.
Just so you know - an ER in German is Rettungstelle 
Calls from school are one of the scariest things there are for parents, especially the prone to anxiety type to which I will be the first one to admit I belong, and so I manage to teach every person in every school the kids attend, to always start the call (or letter or email) with a very clear "everything is ok". In this instance I didn't even get a phone call. Imagine yourself walking down the street in a heated discussion with a five years old about the correct colour for his next MineCraft sheep (don't ask. Just don't ask. You'll get a two hours long response) when a stranger stops you and says "are you Ron's mum?  I am his football teacher. Ron is in the car and we are on the way to the hospital. He had an accident" (ok, he wasn't a complete stranger, I vaguely remember seeing him around the school, but as names and faces were never my strong suit, in that moment he seemed like a stranger).
He had to repeat himself three times before I could actually understand all the words.
A German ER looks nothing like any ER I have ever seen, including those on TV. It looks exactly like you'd imagine any German establishment should look - big, clean, quiet and ruthlessly efficient.
To this day, this is the only German establishment I've seen that was actually true to all German stereotypes.
Ron was not extremely happy with my insistence to photograph every thing. On the other hand, he also didn't want me making idiotic jokes. So what is a person to do?
In the past six months and two weeks we have been fighting our way through the German bureaucracy. It had gotten to the point in which we've decided it's all actually a test. They test you to see when the endless and needless bureaucracy will break you. This is how they check how serious you are about living here. Well, we are rarely serious (ok me. Hidai is a very serious person) but we don't do breakable, so we adapt and learn how to live here.
Ever so slowly we manage to claw our way through the significant cultural differences, the language barriers, and our bottomless todo list.
But an ER? In German?
Getting the splint fitted
I have been studying German religiously for the past eight months, and have reached the point in which I can think of the words I want to say, and sometimes I can even string them together to a really simple sentence. Hey, the other week I managed to tell a Taxi driver to take a different route. I rock in German. Until they answer. I swear when they (and that includes everyone I come in contact with) talk, it sounds nothing like the German course. It's like it's a whole different language. One I do not understand at all. Add the child with the swollen and bleeding hand, the child who doesn't like unknown situations, and the husband on the way to the equation and you can understand how when they said "Ron D to room 5a" what I heard was "Ron D to asdf sertst  aefasf". Eventually the doctor found us wandering the halls trying to find room asdf sertst  aefasf.
At least I know my English has improved enough that I can use it in this kind of situations, but I guess I have Yon to thank for that more than my amazing knowledge of the English language. That is what happens when you visit a hospital every 3 months.
This is what Yon did while Ron was getting treated
It took them less than two hours (which I think in hospital-time is the equivalent to 20 minutes) to determine Ron's hand is not broken (told you we don't break easily) and all he needs is a splint for a few days to let the hand rest so the swelling will subside. He chose a bright red bandage, Arsenal colours after all, and I thought about how apt it all is - Just like Ron's hand, all I needed too was somewhere to hide for a little while while I recuperate. Because I might not do breakable, but I most definitely do wonderfully intense panic attacks complete with chest pain and inability to breathe.
And like Ron, I also chose red.
I bought a bright red sofa for it.

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March 13, 2015

East side gallery - sunny adventure

We had 16 degrees last Sunday. Sixteen. And sunny. Staying at home felt like a crime or at the very least a waste of the finest day we've had since we've arrived here. You can never have a good enough excuse to staying home on a sunny day - we've already learnt that in London, and it seemed the same is true for Berlin. It seemed like the whole city was out, enjoying a rare day of real spring.
We decided to head over to the East Side Gallery to cover the last bit of the wall we have yet to see. The East Side Gallery, just in case you are exactly like me and have no idea what it is, is a 1.3 km of the Berlin wall which is covered in Graffiti and paintings and is one of Berlin most famous symbols and the world's longest open art gallery. It represent peace and reunion. It is also a very good place to let the kids loose.

The problem with taking the kids out to see some artsy type of things is that they really don't like it. They get bored, the get whiney, they start touching things and the question "can we go now?" starts showing up every 30 seconds. Not ideal for walking around a museum. It's not that I don't believe in forcing the kids to do things they don't like to, it's just that it ruins all the fun when you have to run after Yon and make sure he doesn't break a 300 years old sculpture (true story). Add to that the staying-at-home stir crazy, and you get two kids who desperately need a place to run, and two parents who desperately need them to run somewhere else.

The East Side Gallery seemed like the perfect place to achieve it all - let the kids run around, not have to shout at them about touching forbidden things, and see some art and history at the same time. And it only took us three hours and four change of clothes to get to leave the house. Who knew it will be so hard to get everyone into their spring collection?
Kids in spring collection
Half an hour, 2 trains and one pair of lost sunglasses later, we have managed to get to the East side gallery, which apparently has two sides - the one everyone takes photos of, and the one we went to. But our side had a park, and the view of the Spree, and most importantly - no cars.
And in the photos you can hardly even see all the broken bottles and leftover food bits that were spread around the park. I have no idea why, but after a certain age where young people see "cool" and "trendy" and "up and coming" all you can see is - really really dirty. Gosh, I am old.

To be honest I am not a big fan of graffiti as an art form. I have always been more of a museum kind of girl, but the East side Gallery is quite impressive. The amount of time and effort that went into creating each of those paintings is amazing, and as for the message of peace an unity - how can I resist?
Yon touching the blue. He only touched the blue for some reason.
Ron said he relates to this one, as he still misses Daisy from London :)
Kids and wall
Had to put this one in, because....Well, I look so skinny!
It is a wonderful place to visit, and I can understand why it is a must in each and every one of Berlin tour guides. It is just that it is such a shame that people take advantage of the fact that it is graffiti and outside and there is no scurity and think it is ok to draw and write on top of other people's work.

Of course we toured the more famous side as well, where the graffiti was much more political and opinionated than on the other side. And also in much worse shape.

The kids had a lovely time, Yon enjoyed walking around touching the walls and reading everything, Ron tried to see all the languages he could recognise, and I enjoyed the spring and sun. We've been there for about an hour and a half before the sun became too much for Yon (it has been the first time in a very long while that we had a proper sunny day), so we haven't seen all of it, but decided it's better to stop before the whining becomes too much and retreated to the Ostbanhof McDonalds for some spring menu (well, spring drinks. The menu at McDonalds rarely changes). We finished it all with some mandatory Boston Creams (you can't really walk past a doughnuts shop and not go in, can you?).
McDonalds is so ready for summer.
As we got home, and I was fishing for reassurance from the kids that they had a good time and are not extremely upset about being forced out of the house and away from their precious iPads, Yon did stop and announce that it was our "Berlin sunny adventure" and only then rushed to his iPad.
So all in all - a success.

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March 5, 2015

Rare Disease Day

Last Saturday was Rare Disease Day 2015, which I guess most people don't know about unless, like me, they have a child that fits the category and a Facebook feed full of people whose children fit the category. Sometimes I miss the days before we knew about Rare Disease Day, World Sight Day, Autism Awareness Month, Jeans for Genes Day, and so many other days... It used to be that Ron came back from school with a note saying we are having a red/blue/green t-shirt day for this or that cause. Please donate a pound. And all we cared about was how are we supposed to find a green t-shirt in the next 24 hours. Ron is a redhead - he doesn't look good in green.
Nowadays, I get emails and messages and requests to write about each and every one of these days, nowadays I don't understand why they didn't collect money in our school here for Rare Disease Day (or any day for that matter), nowadays I don't know how it is possible to not know about these days and their meaning for other people.
Nowadays I measure everyone and everything with relation to how they treat people, and mainly children with special needs.
And yet, today is Thursday and I am just now managing to finish writing about Rare Disease Day, because I can't seem to be ok with Albinism being part of Rare Disease Day. I have a really hard time with calling albinism a disease, because if albinism is a disease, that means Yon is sick. And Yon is not sick. On the other hand, every time I tell someone new about Yon's ocular albinism they take two steps backwards, like somehow it's or he or me are contagious. Like the fact that Yon's brain doesn't produce melanin can magically transport itself to the other person's brain and he will suddenly start growing blonde-white hair.
It took me all day (ok, I also got into a fight with my computer and couldn't fit the photo in the frame, which I knew I know how to do, and which eventually took me over an hour to fix) but I did join in the campaign, because at the end of the day I can't sit on the sidelines and not join something I support with all my heart just because I have a hard time with the labelling.
And I do, I have a hard time with labelling albinism as a disease, a condition or a disability. It doesn't make it any less true. I have a hard time getting the image of a sick child, or the meaning of a "diseased" child out of my head. But this is the point of Rare Disease Day - to make us understand that what we think of as a disease is not the only correct image.
For me Rare Disease Day is about two things -
It is about reminding us of the fact that medicine, like everything else, is a business. The Rare Diseases out there, or the "Orphan diseases" are the ones that gets dumped to the end of the line - there aren't enough patients to merit spending time and money and resources looking for a cure. But those "not enough patients" are people - dads, mums, children. It is so easy to look at numbers and statistics and say hey it's just 1:200,000 people... It is a very cold comfort for the people who has the condition, to their families, to the people who have to say once and again - no, there will be no cure for that, no one is even looking. Trust me, I say it often enough.
And most importantly - and the reason why I write about Yon so much in this blog, the reason why we tell people about albinism, the reason why I join in every campaign is that people are afraid and hateful and uncaring for what they don't know. Just today I read in Blind Children UK that new research shows that almost half the parents they asked would not invite a child with sight impairment or blindness to a party or a play-date. How many of these people ever saw a child with sight impairment? How many people do you know who has albinism? We have doctors treating Yon who never saw a person with albinism. All everyone knows is the mental image we have from the movies, from the books (like The De Vinci Code or The Heat), where to call what they depict incorrect will be an insult to the word. We are afraid of what we don't know, and the mental image we create of that thing. For the same reason watching the movie after reading the book is always a let-down (and not just because usually the plot in the movie sucks) - the onscreen image is always different than the one we created in our mind. The same is true for the real-life image. This is why we need days like Rare Disease Day, this is why we need inclusion, this is why we need to know.
I have a lot of people on my Facebook and in life who will not "like" or like this post or any post I write about Yon, who don't care, or don't understand or think I am putting him "out there" too much and flaunting his differences instead of being quietly relieved that he "doesn't look different", that I can hide his albinism, or the Asperger. It is easier to "like" a cute cat video, it is easier to share a photo of a cake, than it is to understand how hard it is for kids like Yon to fit in, and how the fact that he does is a miracle. How we can talk for hours about the fact that he decided to learn how to go down the stairs. How amazing it is every time he recognises us from afar, and how when I changed my coat the other day and he didn't recognise me it broke my heart.
It is so much easier to send our kids to a school where everyone "is like us", where they (and mostly we) won't have to encounter anything that makes us feel uncomfortable, anything that will force us to explain to our children about differences and specialness and other ways of life.
It would be so much easier for me to hide Yon's differences, to have him labeled a lot of other things, but not disabled, or blind, or Autistic. But I won't.
Because our children, my child, are not diseased. They shouldn't be hidden and banished to a dark corner or swept under the rug. They shouldn't be a dirty little secret to be hidden from the world. They should be celebrated and congratulated and embraced.
Because it is our children - the sick, the different, the Special - who makes society into humanity.

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February 27, 2015

Copenhagen weekend with kids

A long weekend in Copenhagen was exactly what the doctor prescribed, and so last Friday we managed to convince Yon that we don't have to take all his staff for a three days trip, made sure everyone got a haircut for the photo-ops (waste of money and time, it was a hat at all times kind of weather) and remembered that we still haven't bought Easy-Jet fitting trolleys (we are used to taking all our staff. After all we travel with kids), and made our way to schönefeld airport for a one hour flight to Copenhagen and our first out-of-the-country-holiday in more than two years.
Schönefeld is a funny airport, which more than anything reminds me of the airport in Gibraltar - small and cosy and somehow warm and friendly. Especially after we found a place to sit and I got some coffee and a cinnamon roll.
This photo was taken AFTER the coffee
That, coupled with Easy-Jet's policy of fast-tracking families, which meant Yon did not have to wait in the queue, and the fact that the flight took only an hour (here it is not about the kids but me. I have issues with flying, so Hidai is in charge of the kids and I am in charge of surviving the flight), made our arrival to Copenhagen the best we've ever had.
Actually the whole trip was a whooping success and the kids have already started inquiring about our next destination and what does it mean we can't go every week?

I take none of the credit fir this as it is largely due to two things - planning and internet. Gone are the days were we left the hotel at eight in the morning and came back at night after walking around all day, gone are the days were museums, palaces and cathedrals were an integral part of our sightseeing, gone were the days of sitting at a cafe and gazing at passers by. Nowadays we have science museums and McDonalds and going back to the hotel at six pm... Travelling with kids, and especially of the Special kind, means one thing and one thing only - your trip is only as good as your plan.
So here is my recommendations for Copenhagen with kids -

1. Copenhagen Card - it is quite expensive, but on the other hand it makes travelling by train / bus so much easier when you don't have to figure out how to pay for them, and gets you into almost everywhere you'd go - taking into account that Copenhagen doe not have a "family discount" at most places and that kids do pay for entrance - it is definitely worth it, and we got ours at the airport information, right across from the ATM (if you plan on using a credit / debit card to exchange your money the ATM gives the best rates, but don't take out too much as every place accepts debit/credit cards and the rates are the same).
2. Local SIM card. Or as I like to call it - a life saver. Go to the WHSmith next to the bus/train exit and buy a Lebara sim card and credit for a pay as you go plan. The whole thing cost me less than it does here and gave me 2 GB which were more than enough for 3 days, even with massive use of Google maps. But how will I know how to do it you ask? If you search the internet it will look like mission impossible, right after you land and not to mention the 2 tired kids and 4 bags that feel like 50. Well, it is easier than trying to figure out how to do it here since the instructions are written in English and the very nice sellers at WHSmith know English and are willing to help. It took us all of seven minutes to be the proud owners of a Danish phone with working internet.
Resting at the airport. With internet
3. "And then?" - Like I said - a plan. I guess this one, which is key for us, is more due to Yon's need of routine and his difficulties with new places, but I guess it can't hurt anyone to have a plan to some degree. Our plan, however, is a detailed plan which we say again and again and again including where we are going to go, what street it is on, what time we'll get there, what we are going to see, how long we'll be there, and so on and so forth for the whole day...
4. Hop on Hop off Bus Tour - take the official one because they have a discount with the Copenhagen card and the kids were free. Yon finds sitting quietly very difficult, which can be a bit of a problem on the bus, but the weather was not so friendly and we planned on going through the whole tour (without any hopping) and eat which made him fall asleep and allowed us to both enjoy the city and understand it a little bit more.
5. The Lego Store. The holy grail of the trip for the kids. Prices and stock are exactly the same as in Berlin, but the kids still thought they died and gone to heaven. We were there for a very long while and came out with one big box, one small bag and two posters. We were lucky we had the "not enough room in the suitcase" excuse.

6. Food. Was the way I explained Einsteins theory of relativity to Ron - if you come to Copenhagen from London you think the food is amazing; If you come from Berlin... Well, then it's just pricey. We needed to keep the food quite simple and familiar for Yon so I can't really recommend great restaurant and crazily unique food. I can tell you not to dare enter a McDonalds as it is a very expensive rubbish, that the Hard Rock Cafe has great food and service but costs double the price here, that 7-eleven has very good bagels, that if you want good pastries you shouldn't try to buy anything at the bakeries in the afternoon, that the Andersen bakery next to the central station is a good place for breakfast and that the chocolate is amazing. Oh, and if you go along Strøget (the shopping street) and you see a tiny booth called Rajissimo - go and buy those funny waffles on a stick. They cost 5 Euros each, and taste like heaven.

The kids plates at Hard Rock Cafe - a big success

The amazing waffles
7. Boat Tour - it is the same company as the bus tours, and if you have your Copenhagen cards then it's free. The boat tour takes you through the city canals and all the way to the Little Mermaid "out there in the sea". Like the bus, it has a longer tour in the summer, but it doesn't stop in winter time and has an indoor option, which we took advantage of a. Because it was very cold outside, and b. Because Yon found it hard to sit down quietly and not try jumping overboard. If you don't have this problem, then I'd recommend sitting outside so your photos are better and you get to duck below the canal-bridges.

8. The Round Tower - the kids really enjoyed running all the way to the top and hiding in every opening, and I really enjoyed the lack of stairs which made the way up so much easier. There are a few interesting stops along the way up with exhibitions (they say there is also a cafe but I couldn't find it, and try to avoid the toilet as much as possible) and viewing points. The last part does have stairs but the view is definitely worth it, just beware of pickpockets. When we were there we saw a very suspicious guy trolling the viewing gallery looking more at the people around then at the view...
Regardless, the kids ran the whole way down and declared it an extremely cool tower.

9. Shopping - is not something we did a lot of. Ok, we did virtually no shopping, except for the Tiger store, which we missed so much since leaving London, and is just one of those stores that you can't go in to and not buy something (or two). We did walk Strøget and its surrounding streets a few times, but somehow, even when you sit them down and give them phones, shopping with kids is not so much fun, add to that the fact that everything was quite expensive, and the fear of "holiday buys" (you know, things that only look like a good idea because you are on holiday) and you can understand how we ended up with two shirts and a box of Leogs. But I do have to say that the clothes were lovely, and if I ever get a chance to tour Strøget again, I'll be coming back with a lot more than two shirts.
This is how they look when we try to shop...
10. Experimentarium City - The best science museum we've been to in regards to how interactive and fun it is. It is not included in the Copenhagen card (though we did get a discount with Yon's visual impairment registration card), but it is worth every penny, especially if, like me, you have kids who love science and/or touching things. Yon thought he is in heaven when we told him he could touch everything... It is basically two rooms inside a huge warhorse which is a bit hard to find if you don't get there by boat, with plenty of interactive activities for the young (and geek at heart). We had a very hard time getting the kids out of there....

11. The Planetarium - is really NOT a must, unless you want to see the movie I guess. We did not think Yon would agree to sit an hour for a 3D movie (especially since we don't think he can see the 3D) so we just toured the exhibition. It took less than an hour, and even that was because the kids wanted to play on the computers and see if they can land a probe on Mars.
12. The Blue Planet Aquarium - in Danish Den Blå Planet, it is something you wouldn't want to miss. It is really close to the airport, so we stopped there on our way back and were not disappointed. They have lockers for suitcases, an excellent cafe, fabulous view, and it is most definitely in the top 3 aquariums we visited. It is huge, clean, well lit, friendly and full of weird fish.

When he was younger, going away with Yon used to be awful. It is not a melodramatic exaggeration on my part here, it takes time to understand how to travel with any child, to accept the differences between traveling as a couple and travelling as a family. But a child with special needs adds another difficulty to the equation, especially when his needs revolve around routines, difficulty with new places, inability to wait in the queues, food, and touch. Over the years we've had a few very bad trips and holidays, and at the end we gave up and decided to just not go anywhere anymore.
Being able to go on a weekend vacation with Yon, being able to enjoy every part of it, and having everyone asking for another trip is the result of a lot of hard work and experience, but honestly it feels more like it is just the result of magic.

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