November 30, 2013

What are you grateful for?

What are you grateful for? Yes I really am late for the party. I know Thanksgiving has passed, because I missed all of the last couple of weeks. Ok, who am I kidding, I've somehow managed to miss all of November. I haven't read enough, liked enough or laughed enough this month, and somehow managed to miss writing regular posts on time. Including this one. I have tons of excuses, all the way form "I had so many health scares this month" to "the dog ate my laptop". So what if I don't have a dog. But the end result is the same - I was a bad friend, reader and blogger this past month. And my post is late. Again.
I am most certainly NOT grateful for that.
But I really liked all the posts (titles. I told you I missed the reading part) I saw going around talking about what you are grateful for. It's such an important concept, and one that I personally keep forgetting, to stop and look around. We've been living in London for almost a year and a half now, and we still haven't toasted our move here. Who am I kidding, I don't think we've reached the point of celebrating our move to Gibraltar... Sometimes I think we live our life like it's a race, like if we stopped we would die or something. You either move forward or backward. Evolve or die (loved The Croods by the way). I know it's wrong, that we should stop and smell the flowers, but really who has time? As we speak I just remembered I hadn't folded my laundry and that today is Saturday, aka another laundry day.
Pumpkin pie, because what's Thanksgiving without a pie?
That, together with some need for positivity (doesn't happen much, but still) caused me to decide to make my own list of ten things that I am grateful for. Then it turned out I found 12.
I'm grateful for the fact that after more than a month in a bandage, my hand is finally better and I can now wear my gloves and watch (also for the fact that it doesn't hurt anymore, but more for the gloves).
I'm grateful for my family (though not at this particular moment when Yon filled the floor with cookie crumbs and Ron is playing a football game that sounds a lot like bombing on the computer).
I'm grateful to be living in London. It took us eight years and a lot of work from the moment we first set foot on London soil and declared we are never leaving and until we actually came to live here. We now live in a tiny shoebox of an apartment, that sits in a see of green and is surrounded by "young professionals" with no kids. And we love it.
I'm grateful for heated floors and good winter clothes, otherwise I would have been frozen (or just never leave my bed) from October to April.
I'm grateful for internet shopping, because otherwise I would have no food and no Christmas presents. I find I do 99% of my shopping online. It's a combination between not having a car, being endlessly lazy and the fact that it's cold outside!
I'm grateful that we got Yon's diagnosis this year and that we are finally in the process of getting his Partially Sighted certificate. And then I feel awful that I'm grateful for it, but it will make his life and ours so much easier and will enable us to get him all the help he will need (ok it won't, but it's a first necessary step).
I'm grateful that for once the money we were supposed to get arrived on time, and Christmas will be ready on time (and mostly on budget).
I am grateful for good friends. I am not a very friendly person, so I don't make friends easily, and I tend to move around which makes it even harder to keep the ones I do have. So I am very grateful for my old and new friends (you all know who you are, No need to name names), who know I am extremely bad at keeping in touch meeting, and talking in general, but still love me.
I'm grateful that Hidai still claims to love me, and that we are crossing into double-digits wedding anniversaries next month (have to say I'm partially grateful and partially surprised here. Even I don't like myself that much most days).
I'm grateful that Arsenal are having a good season, because I'm a massive football fan. lol. I made myself laugh here. No, really, I am grateful for that because otherwise my weekends (and most weekdays) are all about "the team" - What will be the end? Will we ever win a trophy? What should we do? Should Wenger go? You get the point. Now I can just tell them not to jinx this lucky run by talking about it!
I'm grateful for my blog, and each and every one of the people who reads it, comments on it, emails me, likes me and follows me. When I started out I don't think I have ever imagined how important this blog will become for me. How much I would get back from it. It is my little corner of the world, the only thing that is just mine, and my passion. And I thank you for coming over and sharing it with me.

Oh, and how could I forget, I am thankful for chocolate. Because really, life isn't worth living without it :)
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November 28, 2013

Happy Hannukah - Expat Holidays

Yesterday was the first day of Hannukah. It is, by far, my preferred Jewish holiday. Well, how can you not like a holiday that demands you eat doughnuts for eight days? True, by the end of it we all look somewhat like a doughnut - rounder around the middle and full of jam - but it's more than that. Contrary to what people outside of Israel think, Hannukah isn't really one of the biggest or most important holidays for Jewish people. In fact, it is one of those tiny niche holidays reserved solely for children, I mean you don't even get days off work for it! But Hannukah has been my favourite holiday for many years, so I make a very big effort to celebrate it even now, after we've lost so many of our other holidays.
Orli, Just Breathe - Happy Hannukah - Expat Holidays
I've talked to so many immigrants over these last four years and they all said the same thing - celebrating a holiday that does not belong to the country you live in is hard, in fact sometimes it feels almost impossible. You never give it any thought when you're in your home-country, but so much of celebrating a holiday is about family and togetherness and the community - the feel in the air that washes over everything before a holiday arrives. Maybe it's part of the reason we like Christmas so much - that need to belong, to be able to feel that holiday spirit once more. When we left Israel, it was just after Hannukah of 2009, and to be honest we revelled in the freedom of not having to celebrate anything belonging to any location or religion. With all my love for holidays, big gatherings have never been my thing, holidays in Israel make me into a bundle of nerves and I guess we needed to rebel a little bit.
Though that rebellion was short lived, it did teach me something. Living so far away gives you options. You can get rid of everything you don't like or don't approve of. There is something about that distance from everything you knew that makes you examine your life in a different way. A way that actually strips it all down to the basics - what in the traditions you grew up on is really important to you? What do you want your children to know? You can pick and choose. That's the good part. The bad part is that after you picked, then comes the reality of just how hard it is to actually celebrate what you chose. I guess that is why a lot of people choose to live in closed communities, or send their children to religious schools - to give them more of the tradition than we can, to give them more of that sense of community, of belongingness than we can do here. We are not religious people, nor are we really the community types, so we live here, where you don't hear Hebrew on the streets, and there's nowhere to buy good Hummus. But it does mean that we can't give our children a "real holiday" like it's traditionally done,
but then again do we really want to?
Orli, Just Breathe - Happy Hannukah - Expat Holidays
Over the last four years we picked and we chose and we made an eclectic list of holidays and traditions that more than anything else, makes us happy (one of the main conditions to being on that list is having a food. A holiday with no food is not a real holiday in my book). And at the very top of that list is Hannukah, because it's in the middle of winter, when you really need a reason to celebrate, because it has such great food, because it's a children's holiday. Just like Christmas I guess, it gets a whole new meaning and dimension when you have children. As an adult it feels somewhat idiotic to light a few candles and sing some songs no one understands. With children, oh with children it lights up the whole house - you have three menorahs, dreidels, doughnuts, latkes, music, laughter. With children it's a real celebration.
Orli, Just Breathe - Happy Hannukah - Expat Holidays
But the real reason it's my favourite holiday is because it has a story, a moral if you want, that resonates with me. Mainly because I'm into big-important-sappy morals, but also because it really is the way we try to raise our children. And so I love Hannukah because I love telling them the stories and meaning the holiday has for me - it's not the traditional way, nor is it what you hear in Israel, because for me Hannukah is far more than the story about who tried to kill the Jews this time. When you get down to the basics, it's not about Jews or any other specific religion, it's about the belief that you fight for what's right. It's about not standing on the sidelines when there's an injustice. It's about the fact that one tiny candle can light up the entire darkness. And most of all it's about the freedom to be who you are and believe in whatever you choose.
I choose to celebrate Hannukah with as much resemblance to the way it's done in Israel. Some of it is my wish to keep some of my tradition alive and build a connection with my children that will be lost otherwise, and some of it I guess is a  defiance against the Christmasing of Hannukah - we don't have a Hannukah bush, we don't give eight presents (or any presents for that matter. We go with the traditional chocolate coins), we don't have Hannukah cookies houses, or any other Christmas elements in our Hannukah. Because we save all that for Christmas.
Orli, Just Breathe - Happy Hannukah - Expat Holidays

For me, holidays are always more secular than religious, they are more the meaning you give them than the traditional one, they are more about connections and family and belonging, and more than anything else - they are about love and laughter. 
And there is no better way to get all that than with a doughnut and candles. 
Happy Hannukah everyone!
Orli, Just Breathe - Happy Hannukah - Expat Holidays

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November 25, 2013

Meeting the Prime Minister - internet safety for kids discussion

Last Friday Good Housekeeping Magazine invited me to participate in a discussion about Children's safety on the internet. All you have to do, they said, is head over to the House of Commons and ask Claire Perry some questions (and as we discovered upon arrival - also the Prime Minister. Thankfully they haven't told us before about meeting the PM. I think I would have been even more nervous). No biggie. I said sure, I would come along, after all I just got an opening in my calendar because the queen postpone our meeting. After going through all my clothes (what do you wear when you are heading over to a meeting at the House of Parliament?), freaking out a little, and researching the subject for half the night, I treated myself for an Orange Mocha at Starbucks (it's a known thing that Starbucks Holiday Range is good for the nerves. And the soul), and found myself walking along Victoria st. towards Big Ben, watching all the tourists and the London around me. Life is funny like this sometimes, and there is no point of time where you were to ask me if I thought I would be going to a meeting with the Prime Minister in the House of Commons and I would have said yes. And yet here I was.
It was my first time in the House of Commons, and unfortunately they didn't let us take photos of the interesting parts (also, everyone else said they've already been there and I didn't want to be the only obviously-you-don't-belong-here person and take loads of photos outside), but they led us to a funny shaped room to sit comfortably and eat jam cookies and drink some tea. There will be some official photos, and probably an article in GH (around March I think. This is what they wrote about it so far), where I will probably look like a fish or a deer, so go buy the magazine. If nothing else for the hilarious photos.
Orli, Just Breathe - Meeting the Prime Minister - internet safety for kids discussion
Working on my deer-look
We've had three discussions, the first one was with the Consumer Director at GH magazine, TalkTalk's Head of PR, and the PM press officer. Then we got to talk to Claire Perry, the PM special advisor for this subject, and lastly we've met David Cameron and talked to him about the importance of it all.
I've been debating with myself what and how to write about this terribly important subject. I don't want to preach. I don't want to get into a political discussion, and I couldn't be bothered with the whole free-speech-is-above-all propaganda. So I have rewritten this post about 5 times by now, and am still at a loss. Internet-Safety is a tricky subject you see. It's something you usually don't give a second thought to unless you have children. And if you did give it a second thought before that, you'd probably be on the free-speech, who-are-they-to-tell-me-how-to-live side of the debate. But once you do have children it starts looming over you, and with every year that passes you discover how much bigger, darker, tougher to handle this subject really is. So the free-internet-guys (it's always men isn't it? I could say something about porn here, but I'm restraining myself) will tell you it's technologically impossible (it's really, really not), that the internet is a free space, and most of all - that it's our responsibility as parents to raise our children.
Why would I, they say, suffer because you can't teach your kids not to google profanities like... I don't know... Girl? Why should the government tell me what I can and can't google? Why should I have restrictions put on my freedom because of YOU?
Walk a mile in my shoes is my answer. Well, to be honest it isn't my real answer, because my real answer will include something about free-porn. But it will also be about shared responsibility. It takes a village to raise a child, doesn't it? I know, there I go again with my corny-hippy-sappy talk, but the truth is in some things in life we should set the bar by the weakest, not the strongest.
I could also point out here that in every other aspect of our lives we don't enjoy "complete freedom" - we have the watershed on TV, we have bans on smoking, we have drinking laws, we have age ratings in movies and video games, we have laws about gambling, we have an age of consent. Those are just a few examples, but they all amount to the same thing - we protect our young.
The internet can't and shouldn't, be any different.
Waiting outside with the others 
Technology is not the enemy, it is a wonderful tool that allows us to do things older generations could only dream about, it allows people like my Yon to overcome disabilities and disadvantages. It allows gifted children like my Ron to realise their full potential. Technology, and the internet in it, should be used every day in the education system, at home, in the work place.
But as one of the leading experts on the subject said - letting your child use the internet without proper instructions and education is like giving him the car keys without teaching him how to drive first.
Internet safety is first and foremost about education. It's about educating those who aren't parents why it's important and why it's right, it's about educating us - the parents - on what it means and how to do it correctly, and it's about educating the children, to make sure they understand the unforgiving nature of the internet, the dangers, their responsibility.
Hey, you can see my legs! (photo by the PM office)
As I listened to everyone talking on Friday (I have to say I was a little star-struck and also I am not an "interrupt the PM while he is talking" kind of person. I leave that to our second meeting), I realized that they were all saying exactly that. All the components of this equation have to work together for us to be able to protect our children.
You have the childless, the government, the companies, the parents, the schools, the children. I can't lie and tell you we got to talk about all of it, or that anyone has an answer to everything, or that everyone is doing everything they can. I can tell you that it's a blooming good start. That the climate today is changing, and that we are on the right path. It is not the same answer I would have given you before Friday. And you know what? I am ashamed of it. I am ashamed, because I am computer savvy, I am a good parent, I have never let my kids play GTA or other inappropriate games, my computer sits in the middle of the living room for all to see, and I didn't even know how much I don't know.
I don't have parental control switched on in any of my devices. Silly isn't it? But the truth is I wouldn't even know where to start. Is it per device? Per browser? How do you switch them on or off? Where do you even get them? Can you put them on the phone? I just gave up before I even started. Apparently I am not the only one (not that it should make me feel any better, but still...), and Talk-Talk (whom all I knew about until Friday was that it sponsors the X-Factor, but is actually one of the leading internet suppliers in the UK) recognised it and were the first one to tackle this problem of parental control head-on. They created a network-based solution - Home Safe, where every computer or device that logs on to your network is automatically protected. They say a third of their customers already use it. Sky launched a similar product last week called Sky Broadband Shield. I am assuming BT and Virgin will both have similar products out soon enough. From next year all those filters will be turned on automatically for everyone and you will have to ask to turn them off. It won't go into any list, no one will care if you choose to turn it off, and it wouldn't be document anywhere, but the tables would turn and those who don't want the protection will have to act, not those who do want it. You would also be able to choose to turn it off at night after your kids have gone to bed, and it will automatically turn on the next morning.
Those four companies, who have around 85% of the internet market in the UK will also launch a very big and expensive three years campaign to help us learn and understand more about internet safety. And it will all be because of that shared responsibility. Nothing of it will be legislated. Why, you ask? Well, first of all so there could be small companies that "total freedom" will be their selling point, because technology moves too fast for the government to really be able to, and to stop the free-speech cries.
But what happens when you leave the house? Well, apparently if you buy a mobile phone (or give one) for a teenager, you should say so at the store and they will automatically put some restrictions on it. It should be better advertised, and also easier to do yourself, but at least it's a start, and the free-cloud is already censored, and schools have filtering systems of their own, so our kids should be protected.
Talking about the schools, from next year they will have a more extensive curriculum in primary schools to teach the kids about internet safety, in the sense of never giving your password to anyone, not talking to strangers, and about cyber-bullying and how to deal with it (what it is, always save the messages, tell an adult, etc.). Hopefully there will also be a conversation about sexting and the dangers of doing things like sending a topless photo of yourself, posting all kind of photos, etc.
The government have managed to pursued Google & Microsoft to block 100,000 search terms globally in an attempt to make the internet cleaner and less pedophile friendly. Some would say that pedophiles don't use the internet for this, just the "dark internet". I have no idea, as I am not an expert on the subject, but common sense says that, well, you shouldn't be allowed to look up "naked ten years old" and actually get results. Of course there should be a war against "dark internet", there should be more funds for it, but you should also send a message that you are cleaning up the regular internet. You can't go into the store and buy a magazine with naked ten years old. You shouldn't be able to google it either.
Our panel - photo by Good Housekeeping Magazine
As I see it, these are all important things, but they are not enough. Not even close. Because it doesn't really tackle the issues of cyber bullying which to be honest is what terrifies most parents these days, or the problem of hiding behind anonymous accounts (they did say they are working on it, but there are too many sites and too many companies and too little ways to check); it doesn't tackle the ads in children apps and the ease in which they can buy apps and add-ons on our devices; it doesn't tackle strangers posting as children and engaging with our children online. It doesn't really help us solve the most pressing issues at this moment.
The world is changing. There is no doubt about it. The internet will no longer be the lawless Wild-West that it has become. We aren't there yet, actually we are far far away. The UK is leading the way on this, we are leading the discussion, and as a third of all household in the UK, our voice as parents should be heard in this discussion.
Somewhere down this line, though it doesn't really want to, the government will have to intervene more. It will have to set better, clearer, more defined rules as to what is and isn't permitted on the internet. It will have to prosecute more, to listen less to the cries for free-speech. Just like in every other space. Somewhere down that line they will have to understand that we have a voice, and that it matters. Somewhere down the line companies like Twitter and Facebook and Last.FM will have to understand that they too belong to the shared responsibility, and help us fight this thing because it's right. Regardless of profitability.
The Consumer Director of GH Magazine put it beautifully when she said - they (the kids) are digital native; we (the parents) are digital immigrants. We, like the government, are constantly chasing the new technology, the new buzz, the new lol's (who here knows what POS means?) while the tech-companies and kids are just... There. But we are not powerless or voiceless. And somewhere down the line we will have to teach them all that what you can't write or do under your own name isn't worth doing.

Orli, Just Breathe - Meeting the Prime Minister - internet safety for kids discussion
I bought chocolate in the gift shop. Hopefully they are better at legislating than at chocolate making

Three last things -
1. If you do nothing else, please do this - if your child has a computer in his/her room, please have them cover / turn around / shut down the camera. It is possible to turn on from afar and watch your child in the privacy of his/her own room and then use that on porn sites / blackmail them / etc.
2. This is NOT a sponsored post.
3. This is NOT a political blog, nor will it become one. Mostly because I don't like political arguments. Doesn't mean I don't have strong political views or that I'm unwilling to voice them when necessary. Just meant that for me, internet safety is not a political subject but a parental one.

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November 21, 2013

Learning to read

"There's an airplane in the sky" was the sentence that brought ears to my eyes last week and made my heart jump inside my chest at the same time. Because in the moment Yon said that sentence I forgot that there is no way he can really see that airplane, I forgot that he is sensitive to sounds and is probably just hearing it, I forgot everything I know about his condition and all I had in my head was one thought - Yon saw an airplane in the sky. In that second I forgot that kids with 40% vision don't see airplanes. In that moment all I wanted was to grab him and run home to test his vision again, prove that all the tests and the doctors were wrong. Prove that my son can see.
Orli, Just Breathe - Learning to read
Hope is a tricky thing. On the one hand it gets you through the toughest moments in life, those moments were you feel like you can't breathe, like you can't take another step, like you are just waiting for the other shoe to fall on your head. In those moments hope is the only thing you have to lean on, hope that it will be better, that there is a light in the end of the tunnel. But hope is also a flicker that lift you up for just one moment, that moment that comes just before the crush.
When we got to Moorfields Hospital to get Yon's diagnosis our doctor told us that we should be happy that we got to this point. When you have a full diagnosis you have a clearer vision of how to proceed, of what to do. She was right of course, but she also took away our hope. Up to that moment we clung like glue to the saying that eyes develop until the child is 7 years old and we have a 30% chance of it all going away on its own. Not when you get the Genetic-Static-Condition stamp. This one has exactly 0% of being treated, of changing, of Yon ever seeing more then he does now.
Hope crushes in waves. Even after you think you lost it all, you can be hit by another wave. Every time it happens it hurts just a little bit more, every time it happens it takes just a little bit more for you to bounce back, every time it happens you lose just a little bit more of yourself.
Yon can't see the airplane. Just like he can't see the other side of the road, or the expression on my face when I am standing more then 30 cm away from him. Static conditions don't change. I know that, but I was still surprised at how fast I abandoned all logic and reason. I was surprised how long it took me to regain my composure, and most of all I was surprised how empty and sad it made me feel. Like I just learned of Yon's condition just now.
And then I was left with this question that has no answer - what do we have to hope for? What hope keeps us going?
Orli, Just Breathe - Learning to read
School art :)
One of my main concerns is how will Yon learn to read. He has about 70% vision up close, but even with that he has the lack of clarity, the movement of the eyes, and the squint to deal with. I made sure he knows all his letters before he started reception, so he will have all the self-confidence of knowing the material, so he won't fall behind from the get-go, and because I was told that the way they learn is through flashcards that the teacher holds and they have to say the letter quite quickly and we weren't sure how he will be able to join in on this, because he might need more time until he sees each letter clearly. But even though he knew all the letters and sounds by the time reception started, we were still left with the question of reading. Because reading means joining letters to words, words to sentences and sentences to paragraphs. And that is not an easy task when you have to use big letters, when the letters on your page are dancing in front of your eyes, when it takes you a long time to read each word.
One of the things they keep telling us is how young Yon is. How he has to learn all the tricks and methods to maximise the vision he does have. I confess that I can and have told that to others who have asked me, but secretly I don't really understand how that work. So I resigned myself already to the fact that he will probably find audio-books easier, and that I should be grateful for technology. I resigned myself to the fact that he will never be able to read and write in Hebrew, because it will be difficult enough teaching him how to do that in English. I have resigned myself to not thinking about buying books that "will be good for Yon later on" and to donating all the rest.
Ron learned to read just after he turned two. By the time he was five he could read and write fluently in English and in Hebrew. It was so tough for me to accept the fact that Yon didn't want to learn, didn't care about letters or numbers or reading. And after we found out about his condition I was terrified that he will never learn how to read. I know technology has come a long way, and that you can get audio books and the accessibility features are amazing, but how do you make peace with that?
Maybe it doesn't seem so bad, maybe it's just me, but I was a bookworm all through my childhood and adolescence (and I wish I had the time to be one right now too). I was one of those people who borrowed seven books a week from the library, and read one on the bus on the way home. I was always reading. I read everything I could put my hands on. Books gave me an escape, a new world, my English. I couldn't live without books, and the thought of my child missing out on all this, on the feel of opening a new book, on being able to sneak peek at the end, it was just too hard for me.
It doesn't help that Yon actually loves books. He loves our weekly trips to the library, he likes hearing stories, he likes flipping the pages. Somehow it made it even sadder.
Orli, Just Breathe - Learning to read
Yon in the library last week
Last week they finally started reading lessons in Yon's school and he brought home a book. It's the Oxford reading tree books, so you know how it is, the first books have one or two words per page. He was so proud of it, he ran out of the classroom with his book bag to show me his book, and made me sit outside his classroom and read it to him. His teacher did write in his reading journal that he was interested and enjoyed it, but we didn't even try to ask him to read it, but read it to him a few times.
This Monday he brought a second book home, "The Caterpillar". And this time it said in his journal that he actually read a few words. The teacher told us that Yon is doing excellent in all the studies (I don't think she believed us when we told her he knows all the letters and how to write a few words). So we got home, ate some of Ron's cake, and asked him to read the story.
And he did.
Orli, Just Breathe - Learning to read
He read every word (well except for chrysalis), he understood it, and he thoroughly enjoyed the whole thing. We've done it every day since, with other books too, and he loves it.
So maybe there is hope after all.

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November 18, 2013

Baking and autumn hope

Not all those who wander are lost. I've been thinking about this phrase a lot this last couple of weeks. Maybe because I feel I am. Lost, that is. I have been feeling low and unwell and lost for the past couple of weeks. I've tried writing positive things in hopes that it will cheer me up but I am not a cheerful-inspirational kind of person so unfortunately it did not work as planned and I got some not-so-nice reactions which left me feeling even more low, and questioning the whole blogging thing. I felt my blog (or maybe it's me) is going nowhere or maybe backwards as everyone around me is moving forward. So I tried taking a few days off and hide from the rest of the world - no twitter, no facebook, no contact with anyone. But that just made me feel even worse, as I watched one episode after another of TV shows where everything gets better in just 45 minutes, while I had too much time to think and not like where all my thoughts were taking me. So I tried to take all the anti-flu medications I could find in my medicine-drawer (and believe you me, there are a lot of them there) because according to other people (Hidai) when I'm sick I get depressed. You know how it is that you can look at your child and your first thought is "I think he is coming down with something"? With my kids it's eating. The minute they eat less is the minute you know they are coming down with the flu. For me it's the doom & gloom. When you start hearing me talk about how my life is ruined and it will never get better, that's your sign to give me a couple of Lemsips and send me to bed (and not talk to me, unless you want to hear how miserable my life has been since the moment I was born). All those pills did help a bit, but I have been left in this not-really-sick-not-really-healthy kind of thing, which left me in a place where I can laugh at my gloom & doom but I still feel it creeping back up.
So when hiding, self-medicating and feeling sorry for myself didn't help and everything did look like it will never get any better, I took solace in the fact that everyone around me seemed as miserable as I am. Everywhere I went, every blog I read, every person I talked to said the same thing - November isn't a good month. It's not its fault, I guess, that there is nothing very comforting or nice about it - the weather gets colder, the days get shorter, the gloom is everywhere. Christmas is still too far away to get into the spirit, and it all seems kind of hopeless. I went back to check (se easy to do when you have a blog where your life is just spread out) and last year was exactly the same. November was not a good month.
I guess there is something comforting about this consistency. It's like the tide. But not while you are in the middle of it. Not while you are bust constantly looking around and seeing the should-haves, the could-haves the why-didn't-I. Not in the moments where hope seems like your worst enemy and not what helps you get up in the morning.
But then hope doesn't ask you when to show up does it? On Friday Ron & I watched the last of the Bake Off Masterclass shows, and after I explained to him that a. real baking is not as easy as watching Paul & Merry on TV, and b. baking is part science and part art, Ron decided to learn how to bake. I didn't take him seriously because, well, because none of my boys has ever showed any interest in baking apart from the eating part of it. But as it turned out he was serious, and that is how on Sunday morning I found myself explaining the basic of baking to an 8 years old, and letting him bake his first cake all by himself.
I don't get a lot of shared activities with my kids, I mean ones I also enjoy. I have always been secretly jealous of those parents whose kids enjoy baking, or shopping, or making jewellery, while I had to learn all about football. And zoo animals. I hate animals, and all things sports. But I love my kids, so I can tell you everything you didn't want to know about the English Premier League, and the London zoo. Baking has always been my thing, and being able to share it with Ron was a wonderful experience both for me and for him, one I resigned myself to thinking will never happen.
I chose a simple old fashion coffee cake for him to try out from a children's baking book I bought years ago when I was under the impression that my kids will for sure be into baking. First thing I learned is - I need a new children's book. Preferably a British one. But after Ron and I overcame the fact that the ingredients we had at home were a little different than the ones in the recipe (I told him I will teach him only if he won't complain when I change ingredients or quantities), I overcame my need to have everything done my way (also known as "the right way"), and Hidai overcame his fear of having the kitchen all messy, we were on our way to baking.
Ron did most of it by himself, from setting out the ingredients, to breaking the eggs, mixing everything, pouring the mixture and doing the dishes, with I was just standing alongside him, cheering him on (and helping with the oven). After an hour in the oven his first cake was ready and I got a moment I have long ago gave up on hoping for.

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November 11, 2013

Blogfest 2013

I went to Blogfest 2013 on Saturday. Seeing how Blogfest is an annual conference for bloggers organised by Mumsnet, it was meant for what is sometimes called "mummy-bloggers". Mostly it's called like that by people who try to insult us, because, as I learnt in Blogfest - "mummy" is a derogative word when not coming out of a five years old's mouth. Feel free to disagree. I know I did.
Going to Blogfest was a very big step for me. It was my first blogging conference, actually it was my first ever professional conference. And let's be honest here - I am socially awkward at the best of circumstances. I don't like small-talk, or mingling, or people. I know you think it's because of the English, and my being new to the world of professional blogging and the UK, but it's not. Not that my funny accent helps, but I was bad at all this in Hebrew too. I think if I had to find one word to describe myself best it would be "outsider". I am the one on the fringe looking in. And I like it. But it makes going to events where you are supposed to mingle and make connections a bit tricky.
I knew all this before I bought my ticket (actually Hidai bought me the ticket because I was on the fence for weeks), and still I decided to go. I decided to go because for the first time in a very long while (probably since I finished my masters in 2008) I have a group I actually belong to, and somehow going to Blogfest made it even more real and tangible. Second of all because my biggest fear in this kind of events is having to go alone (I usually make Hidai come with me to everything), but this time I had Jane from Ethan's Escapade and Steph from Steph's Two Girls to go with, so I had someone to hold my hand and I didn't have to be the wall-flower standing alone on the side of the room looking at everyone. And thirdly, because I like Mumsnet. I am not very prone to liking organisations or institutions, but I like Mumsnet. And no, unfortunately they are not paying me to say that. I really don't think they know I exist. Or think my blog is big / important / influential enough to care. But I like them, because I like people who want to change the world. I like people who think we can change the world, that we should. I like people who use their powers for the greater good.
So I went, because I want to change the world too.
I know, I know, being an idealist is like being a... a naive child I guess. Nobody believes in ideals anymore, and who has time to change the world anyway. I have two more loads of laundry waiting. Life is hard enough and busy enough as it is, and idealism is all fine and good but it never pays. It does not put food on the table. That's why I went to the lecture about how to make money from your blog and not the one about how to change the world.
Orli, Just Breathe - Blogfest 2013
Steph, Jane & me on our way (photo by Steph)
So what did I learn in Blogfest?
Well, I didn't learn how to make money from my blog (though I did encounter too many people who money apparently just fall at their feet without them having to work for it).
I didn't meet 330 new people who will now read my blog and will make me either queen or at least a popular blogger, because let's face it when you are socially challenged you are less likely to go around saying "hey, I know we don't know each other but could you please follow my blog so I will be able to sit in the cool kids table?". You are more likely to not even know where that table is.
I didn't ask any wise questions at the panels I attended.
I didn't eat because every break, by the time I found the buffet table all the cakes were gone.
I wasn't brave enough to go up to Professor Tanya Byron to tell her I am a huge fan, or to Stella Creasy MP who talked about stopping internet bullying. I wasn't even brave enough to go talk to Gina Schauffer from Zone agency to see if they would be willing to consider working with my tiny blog.
So I guess I learnt that I am still just me.
Oh, I also learnt that in order to get a chance to win a family holiday from Mark Warner I have to share my top tip for a family holiday with you all. Well, listen up, because here it is - my top tip is plan the holiday according to the youngest person who is going on it. When on a family holiday, the kids rule the schedule and plan. Oh, and a tiny gift per day of good behaviour might sound like a bribe, but it will also what can save the whole day and means you don't have to pack tons of toys from home. And last but not least - mummy day. I explain to my kids that their holiday is my work, so I get one day of everyone doing just what mummy wants...
Orli, Just Breathe - Blogfest 2013
But I also listened to Stella Creasy talk about stopping internet bullying and making companies and people take responsibility for their actions and choices, about not hiding behind the "it's the technology's fault" line that is clearly just a poor excuse for not wanting to take responsibility for your own actions and words; I listened to Professor Tanya Byron talk about how the internet and the technology could change our children's lives for the better if we stop viewing it as an enemy and learn how to use it properly, and about stopping to think before we hit the publish button and ask our kids for their permission before we publish anything about them; I listened to Dr. Sue Black who set up a wonderful and inspiring program to get mums more tech-savvy and show them how technology can change their lives for the better; I listened to a crowd of about 300 women get very angry when it was told we are less worthy as women or mothers because we write "mummy-blogs", make jam, wear high-hills, without a university degree, and generally make "anti-feminists choices" by a panel of other women; and I listened to Jo Brand talk about how far women have come in writing, in stand-up comedy and how much more we have to do.
Orli, Just Breathe - Blogfest 2013
So I guess I learnt that idealism isn't really dead or obsolete, and that even in London of 2013 there is still a long way to go.
I have a child with special needs, I am an immigrant, I am a stay at home mum, I am Jewish, I am a woman. My blog touches all these subjects, because they are all a part of who I am, and every day I hear from women who feel ashamed, less accepted, alone, because they also share one of those points with me. Every day my heart breaks a little more for each of us who goes through the unpleasant experience of being looked down at because we are any of those things (or any other thing). I get asked quite repeatedly why I write under my own name, why I put photos of myself and my family, why I write about Yon's condition so openly. This is why. This is my small way of helping. My hope is that with each of those posts at least one person feels less alone, and maybe others change the way they perceived disabled children, immigrants or women. With each of those posts and photos and stories I hope I am doing my tiny bit to help change the world.
And what I learnt most in Blogfest 2013 is that I am not alone in that.
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November 7, 2013

Can you get help?

On Monday, November 1st Katie Price gave an interview on BBC radio 5. I know who Katie Price is mainly through my reading of Heat Magazine, and if we discount the fact that it took me a very long time to understand that Katie Price and Jordan are the same person (hey, I am still new to this country!), I think I have a rather good knowledge of her public life. I didn't know, however, that she has a disabled child. I guess it is not one of those things they write about in Heat, probably less photogenic than another photo of her in a bikini. I also didn't hear the interview on Radio 5. I am not that big on news, or current events, or politics. You might think it makes me shallow and that is fine, but the truth is that I see it as one of the privileges of immigration. Israelis are all news junkies, and I am no different. And like any recovering addict - I can't use "just a little bit". If I start down that road, I immediately find myself immersed in it. So I found a compromise that works for me - if it reaches my Facebook / Twitter (or Heat), it's news I listen to. Otherwise I have no idea what is going on. I found out about The Interview through Lucas at Abstract Lucas who wrote a post about it, and linked it to the linky in Hayley's blog Downs Side Up, and invited me, as a parent of a disabled child, to write one too.
First thing I did was find out what exactly happened. Katie Price was asked about being a parent of a disabled child. This is her answer from the BBC News site -

Walker asked her if she thought there was enough help available for families with disabled children. Price said, "There actually is a lot of help out there but some people are too ignorant and they don't want to look for the help." She mentioned that her son is "statemented" in the UK's standard education system and gets his medical treatment via the NHS: "But you do have to fill out the forms and you do have to take the time out to do it. If you look for it you can find it."
When pressed on what she meant by people being ignorant, Price said it could be that some parents are "too lazy". She said, "They probably think 'oh there isn't help' but you have to go and find it. It's not going to come to you… People might think that because their child is disabled that no one will want to help. Well, that's the wrong attitude because there is help if you go out and get it."
I debated with myself for a long time about writing a post about this subject. First of all, I think I am still not used to seeing Yon as a disabled child, or a child with disability. I physically recoils every time I have to write this phrase. I automatically want to protest, I want to shout - but he isn't, he just has Ocular Albinism! Even after all this time it is still tough for me. Secondly, I thought, who am I to write anything about any system in this country? I just came here a year and a half ago. Who am I to say anything? It always seems to me for some reason that only real British people can have an opinion. Then lastly I thought that actually, we got all the help we needed, so how can I say anything bad about the system? And all these points are valid and true, up to a point. So in the end I thought, that because of all these reasons my outlook on the subject might be different than most, and maybe it should also be said.
Orli, Just breathe - Can you get help?
Yon showing off his new glasses
The system here is so much better than the one in Israel, even if isn't perfect, it at least gives you the option of getting everything you need through the NHS. When I tell Israelis that Yon is treated through the NHS, and it's all FREE, they think I am making this up. No one believes we get to see the doctors at Moorfields or that Yon gets his glasses for free. We used to pay 90 pounds a pair when we lived in Gibraltar. In Israel every lens cost around 60 pounds. As Israelis we are programmed to seek private medical help at all times. Last week I was sitting in a room filled with British people who talked about the cost of pregnancy. None of them took into account the cost of medical tests during pregnancies. We spent thousands of pounds on each of our two pregnancies in Israel. When I told them that they looked at me like I was crazy. Maybe I am. The system should work like it does here. There should be good free medical treatment for everyone. 
I know it is not the most popular thing to say, but it leaves me speechless every time. The level of care Yon gets through the NHS and the school systems is something I would never have believed possible. It is one of the main reasons we chose to leave Israel. Not the medical treatment in itself (we didn't need any when we left, and we still keep our private medical insurance anyway), but the belief that people, just common working people, deserve to have it.
On our way to a coffee morning organised by our outreach program over half-term
No, the system isn't perfect. and no, in reality we didn't get all the help we needed. We filled the forms for Yon's behavioural assessment in April. We still don't even have a date for when it will happen; We have been waiting to get an appointment from Moorfield's visual aids clinic for three months now; The first time we heard there is a family support service in the hospital was last month; Our doctor refuses to register Yon as partially blind because she thinks we are after benefits; We were told there is no way to get a statement for a visually impaired child; 
And I think the worst of it was that we were left to drift. When we got Yon's diagnosis we were just left there to figure it all out for ourselves, with no help from anyone, no guidance, not even a leaflet with a list of what to do next. We are new to this country, but I think that in any case, even if you were born here and lived here all your life, when you first hear your child has a disability you are in a state of shock. You don't know what to do, where to go, who to turn to. And to me this is the main shortcoming of the system, that it doesn't tell you what you should ask for, what it will give you when you ask. We were fortunate because help found us. We had an amazing Nursery teacher who saved us and Yon and found us an amazing outreach program that holds our hand every step of the way (even though she is overworked and underpaid). But if it wasn't for him, we wouldn't even know where to start looking. We are fortunate because Yon's condition doesn't require much in the way of help at the moment.
But I know that is not the case for everyone. I also know that even in this country there are those who would like to see the system die. There are those who see people with disability as a liability, parents of disabled children as lazy or ignorant, those who see anyone less fortunate than themselves as a parasite on society. I do have some chosen words for those people, but I also know they won't help. The only thing that helps is talking about it, writing about it, and showing people what disability, what people who needs help, really look like.
I don't think that is what Katie Price tried to say. As a parent of a disabled child, no matter how rich or famous you are, no matter how much money you have to spend on your child's care, or how good your private medical insurance is, you will encounter those people who looks at us and never see our children for anything more than their disability. I think, if there is one thing any parent of a child with disability learns is humility (and maybe humanity), so I can't believe Katie Price thinks parents of children with disabilities are lazy. Or ignorant.
In the end of the day, the system is still here, and it will give you help. Maybe not all the help you need or deserve to get as a tax payer and as a person, but if you know which question to ask and where to go it will give you help. You just have to figure out what those questions are. 
I think, what Katie Price tried to say in her eloquent way, is exactly that. The system here in the UK exists. And though it is not perfect, and though it is our responsibility as people who've been there, as parents of disabled children, as bloggers, to constantly improve it, it still exists. And the idea that people can and will get help just because they are people still exists here. 
Let's do our best to keep it that way.
Orli, Just breathe - Can you get help?

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November 4, 2013

Medical avoidance

When it comes to health problems I make a very clear distinction between my own and others. I have never been on the "let's wait and see" side of things when it comes to other people's health issues. I come from a long line of hypochondriacs and self-medicating crazies who never leave the house without at least one purse filled with drugs inside their bag, and Hidai is the son of a doctor whose gift to us when Ron was born was two boxes filled to the brim with every baby medicine known to mankind. Seriously, he brought it to the hospital. And then he came around every couple of days to make sure the baby is being treated well. Also, and you might not have known that, Jews loved doctors. That is why the old joke about every Jewish mum wanting her son to be a doctor is not really a joke. We love medicine and procedures and doctors. Life isn't complete without them.
My kids have both inherited their father's immune system unfortunately, so apart for a couple of times a year at the most I don't get the option to use my vast medicine cupboard. It's not that I'm not happy about it (what ever gave you that idea? The fact that the only time I get a cuddly Ron is when he is running a fever? Or the fact that I keep 3 bottles of Nurofen in the house at all times?), and it does mean that the expensive private medical insurance I am paying for since the kids were born has gone unused for years (Ron's last time at the doctors was about 3 years ago. Yon, when he was about a year old). But it does mean that the health problems we do get with them are always something quite severe and out of the ordinary, and then for me it's never a question - Doctor. Medicine. Now. It is true that Hidai, being the son of a doctor (the most untreated of all children) never rushes like me, but still I guess in some circles (you know, where normal people hang) we would be considered a bit too quick to treat. Mostly I think it's because we prefer the feeling of doing something, of treating, of solving, to the feeling of waiting. I don't do patience well, nor do I like to feel that my fate is in someone else's hands, or that I am not in control. Hidai likes the knowing. I like the control. And we both prefer action to waiting.
Orli, Just Breathe - Medical and avoidance
At the dentist
But all that is true when it comes to other people. When it comes to my health, well, then it's a different matter all together. When it comes to my health I always prefer the "let's wait and see" method, I don't like doctors when it's about me. Nor do I care for pain medication (the strong ones, not the regular ibuprofen they sell at the pharmacy and is known around here as candy), hospitals, tests, and results. I don't want to know. I know it sounds weird, but the way I see it, it will be something bad, something I will have to treat with more doctors and tests and procedures, so I really would like to not know.
It's not that it's an unfounded weariness of the whole medical profession. The truth is my joints have been deteriorating for years. First it was my knees, which started going down the hill when I was a teenager. I have spent so much time in doctors offices, x-rays, tests, physiotherapy, medical boards, and the likes when I was young, just to hear again and again that there is nothing anyone can do. I have somehow managed to get myself something that is called cartilage degeneration when I was about 19. I know you don't know what that is. It doesn't matter. What matters is that it's unfixable. Seeing as I was 19, I took it rather well, and stopped. No more doctors, no more tests, no more physio. I got back on my high-heels, and never looked back.
Then a few years back my hands joined the party, and I preferred to chuck it up to too much typing (I was working a lot of hours in those days typing away at my computer) and continue to ignore it all. Even after I hit my hand while cleaning and couldn't move my right hand for weeks (had to give up knitting after that). Even after I fell while doing Pilates because my hand couldn't support me. My reasoning was that when you ignore it, it usually goes away, and aside from an impressive collection of pain medicine and splinters, I lived my life like every other 80 years old - with the ability to forecast the rain.
Unfortunately I then moved to London and started blogging. The combination of the lovely weather here and the excessive typing of the last year and a half lead to me not being able to use most of my right hand, and some of my left also. It is a bit of a shame, as hands are quite important for normal day to day life, but why should I let it interfere with my usual avoidance and denial? It worked so well up until now. All it needed was just a few adjustments, you know no more knitting or kneading or opening jars. Nothing big. For some reason Hidai disagreed, and to cut a (very) long story short (and save you all the arguments we had in the middle) I got a referral to a physiotherapist, and for the first time in more than 15 years I was going to have someone look at my joints.
Orli, Just Breathe - Medical and avoidance
My hand
My new physiotherapist tested my hands (I was only sore for a week after that) and sent me to an EMG to see if I have carpal tunnel, which, according to the very lovely guy who did my test, I probably have in my left hand (and apparently this is what explains why I feel less pain in that hand). She also sent me to do a neck MRI. Obviously I assumed it is to make the diagnosis of MS. Or a tumour. It is not supposed to find any of those things, but you know, I come from a long line of hypochondriacs. It didn't help that the very nice guy who did my test wanted to run an extra scan and did not give me any indication of how it went, in fact he looked kind of hesitant when I asked him.
Orli, Just Breathe - Medical and avoidance
On my way to the MRI

I have three weeks to wait until I get my results. Three weeks of worrying what my MRI will show, and true to myself I am not really sure if I want to know. It will either be something horrible or untreatable.
But I am tired of walking around with my hands in bandages. And I am tired of the constant pain I am in. And I am tired of having to take days off because I can't move my hand. I am tired of having to think about every move I make because it could result in paralysing my hand, and of having to hide it from everyone all the time.
So maybe, just maybe, knowing would be good.
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