July 31, 2013

Learning to learn

Even with all the attention he gets because of his (still can't call his Ocular Albinism a condition. I've been staring at this screen for five minutes looking for a word to replace it. Disability sounds even worse. I will go with "needs") needs, Yon is still a second child, and I often feel guilty for neglecting him, for not giving him my full and undivided attention, for not giving him the same advantages I gave Ron. You see, he and I need to face those comparisons of "when Ron was his age", and both of us - Yon and I, always end up lacking. Because it is not easy being Ron's little brother, and if Yon doesn't know it yet, I am sure he will soon find out. Ron always wanted to study, and even if you didn't really want to teach him, he wouldn't stop until you taught him what it was he wanted to know. And as he was an only child for four years (at some points it seemed he will always be an only child) and I love teaching him, he enjoyed my undivided attention, my patience, and my teaching abilities.
And then came Yon into the equation, and Yon is different. Because no two children are the same anyway, and because he had to carve a different role for himself in the family, and because of his needs. Needs we weren't aware of until this year.
I tried so hard when he was younger to teach him, I used everything I could think of and none of it worked. He didn't want to learn. He didn't care about letters, or about numbers, or anything else. He loved his animals, and he learned to hide every little thing he learned so that we wouldn't know for sure what he knows. Where Ron always wanted to grow up, Yon enjoyed being tiny.
Orli, Just Breathe - Learning to Learn. Ocular Albinism
I had to give up. But I never lost the guilt that there is something more I could have done, and the worry - what if my child is.... Ordinary? What if, because he is the second child it is easier for me to just let him be and he loves his youtube and the iPhone and playing with Ron and his animals and his imagination games, than he won't develop as he should?
I didn't care that he could remember whole stories, that he can identify music from the first note, that he has an amazing animal-vocabulary and regular vocabulary, that he is friendly and smiley and has a great sense of humour and sense of irony, and a wonderful imagination and dramatic abilities. First of all because he still didn't want me to teach him letters, and second of all because I am against letting reality interfere with my guilt.
Then one day, without anyone knowing it, Yon decided he does want to learn his letters, so he used the iPad and all the ABC songs he and grandpa could find, and he learned the letters by listening to the songs and watching the clips.
I was so happy that he did, because at least he knew letters and won't be ordinary, but I still felt like a failure as a mother. What kind of a mum has a child who doesn't want to study with her? a bad mum, that's who.
And now for the point of the story (bet you thought I didn't have one). The move to Reception terrifies me. I am now very aware of all his different needs, I am very aware how new people sees them and him, how close we are to go back to new teachers attributing his behaviour to autism and not to his vision, how hard we all (including him) worked to get him to a good place and how easy it will be to deteriorate again. We had so many meetings in the school about it, we brought in our great advisor to explain, we talked to everyone who would listen (and those who wouldn't), we wrote emails, we did everything. And still I can see it in their eyes. They don't get it. They don't understand how Ocular Albinism works. And it scares me, more than I can articulate.
I am worried about all the things he needs to overcome when going to Reception, that together with his needs will make it even harder on him. We got permission to take him into the classroom before school starts so he can get to know the new surroundings, but that won't help with everything. It won't make the teacher or the routine or the other children any less new. It won't make his having to be in school full time and eat lunch there for the first time easier for him. It will all be so much.
And in the middle of all that how can we expect him to learn? to study? how can we??? We don't even know if his vision will permit him to learn how to read a whole word or a sentence, we weren't sure if he can learn how to write. How can I leave it to the school?
So I decided to teach him at home this summer everything he will need to know for school - letters, phonics, writing, numbers, additions, how to use the computer, etc.
Orli, Just Breathe - Learning to Learn. Ocular Albinism
I know you probably think it's too much. The school thought so too, but I will not let him be more stressed than he will have to be. I can't let his first encounter with the school system be a negative one. I want him to have confidence, to know he can reach the stars.
But I was afraid. I was so very afraid to even start. What if I fail again? What if I can't reach my own child? What if I won't find the right way? What if there isn't a right way beside auditory? What if he will refuse to learn with me and instead start doing all those things that make me still worry about him being on the spectrum?
I bought him the same booklets I used with Ron (English / Maths Made Easy), and a special keyboard and mouse, and started working with him on Friday. It has been 5 days since, and he loves it. HE LOVES IT. He enjoys playing the computer on his own, and prefers the English to the Maths, which isn't a big surprise (he loves letters, stories and songs while Ron loves his numbers), but he is willing to sit with me and learn. In the Maths he needs my help more, and we "write" the numbers together, and it is harder for me to keep him interested in the work, but in the English one he can hold his pencil correctly and scribble the letters alone.
And today he read a complete word for the first time.
Orli, Just Breathe - Learning to Learn. Ocular Albinism

Ethans Escapades
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July 29, 2013

Lost on Twitter and small acts of kindness

I am new to the world of serious blogging. I've been blogging for quite a while now, a few years to be exact - my first blog was in a pseudonym, my second a closed family-friends one, and this one is my first real attempt to get my stories "out-there", to try and reach as many people as I can. This blog is a year old nowadays, and yet it isn't, because it took me a while to learn this world of "real" blogging. I am actually very new to all the professional aspects of blogging. I got my first Tots100 ranking in May. It was bad.
Mainly I guess for two reasons - firstly because my SEO was in the toilet. And after two months of trying to fix it, it is still rooted there quite firmly. Apparently I don't get it and it doesn't get me. Google is the bane of my existence. And second, because my Kred/Klout was down there keeping my SEO company. What is Kred/Klout you ask? Why is she cursing us? well I've found out about them myself a month ago, when my ranking fell even lower (didn't think it was possible, and yet there it was). They are the internet's way to decide how "important" you are, based on your social media activity. According to the internet, I am not. at all.
After trying tirelessly this past month to improve both these grades, I can say that they are absolutely right. I am not important.
This month I've managed to improve my ranking marginally, and am now sitting comfortably in the "will never amount to anything" column.
During this past month of trying endlessly to be social (working on the assumption that if you are social you are important) I did manage to prove a long standing theory about myself - I am not a social person. It's not that it comes as a shock, after all up until about a month and a half ago I had 80 followers on Twitter. And most of them where there because Hidai & I share a Twitter account. Most our Facebook friends are Hidai's friends. And we have about 5 people on Google+ who aren't family. I am awkward in social situation, horrible at small-talk, lacking in the superficial charm department, don't do fake niceness, and have the worst poker face (also, not really good in Poker. But I have a killer Black Jack game). I actually like not needing to talk to anyone for days. All these endearing traits, which are responsible for my having less than ten friends in the whole wide world, are not considered an asset when coming to build an online persona. Or friendships. How do people build friendships anyway?
For me, Twitter looked like high-school. Or a really big water-cooler. I've been out of high-school for a while now, and even when I was there I adored my "almost" status - I was almost in every crowd, and that way I never needed to be in any of them (except with the few friends I did love).
Trying to find my place in Twitter felt like being the new kid in a gigantic high-school, or group. I felt lost. On Twitter everyone has a better life, better kids, better sense of humour, and a better blog. Everyone gets invitations to amazing events, and PR emails and calls that offer them free stuff and sponsorships for things, everyone has kids that let them write all day, contests they win, high rankings in every directory, blogs that win awards, everyone were blog of the day/week/month/year somewhere, they have thousands of followers and, you know, a perfect life.
I know it's not reality, and that everyone chooses what to portray to the world, but I've had a few too many "everything in my life is perfect" real people lately, and combined with a few unsuccessful days where I felt the world (and eBay, and a certain blogging directory) hates me personally, that I will never amount to anything and that my blog is actually getting smaller by the minute.
Hidai was busy with work, the kids were just starting their summer-holiday (also known around here as "MUUUUUUUMY holiday"), Yon was sick (literally. On the floor. On the couch. On himself) and I sent a message to the universe of needing a little good vibes, good news, and positive reinforcements.
The universe sent me silence. 
And then I got some family-loving, a kiss from Ron (there is nothing quite like a child's kiss don't you agree? I always try to steal more kisses from them. Which, I guess is why I get less), and a small act of kindness. 
I got flowers, sunshine and a hug, that were all virtual, but were so very real to me. I guess because that small act of kindness made me feel that I do matter, that no matter what the internet says I am important, and it made me think that maybe, just maybe, there is still hope.

Orli, Just Breathe - Lost on Twitter & Small acts of kindness
this is how trying to write looks like in my house these days

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July 24, 2013

Children's accounts - yay or nay?

On Monday I attended a workshop with Mumsnet and Barclay's Bank to help the bank "understand parents and families better". When they called me, they promised a day filled with fun, food and great people. To say I was coping well prior to going would be a flat out lie. I was terrified. You see, it had all the making of an actual nightmare for me - going to a place I don't know, full with people I don't know, without Hidai (also known in these situation as my security blanket, or the one who can actually remember his name when asked), to talk in front of other people, about banking. And of course they said there might be a filming crew. And interviews. Banks are not my strong suit. At the risk of sounding like a complete idiot, banks terrify me. If I can avoid all things bank-related I will. I will go to extreme length to do so in fact. I can count on one hand the numbers of times I've been in the bank by myself, I don't know how to log in to our account online, and every time I have to deal with something relating to my business account I get petrified. Yes, I don't do well with banks. Now please don't ask how I am with handling HMRC.
Why did I go then? I did have a few very good reasons, not including the mini-sandwiches they promised. Firstly I was hoping to convince the Barclay's people that a pink website with flowers will be less intimidating than the current one, where every time I log in I get a warning - pay your mortgage or your house will be reclaimed. I don't even have a mortgage with Barclay's...
Secondly, in a sharp contrast to the picture I portrayed just a millisecond ago, I am very much an equal partner when it comes to all our money decisions (even if it has more to do with Hidai insisting and less with free choice), so I do have pretty strong opinions about money and banking, thirdly because I really wanted to convince them to add a budget tool (or app) to their bank website, and to save me the trouble of logging everything manually when they already have the data in their system (sorry Toshl people. You have a great app, it's not against you).
So I said yes, and set down with Hidai to learn everything I don't know about our bank. I came with notes. Nobody else in my group had notes.
A bit embarrassing. But less than the fact that I also came with a notepad.
The mini sandwiches saved the day.
I am going to surprise you all here, and tell you that I did not fuck up. I had a great day, I talked to people, I spoke about all my ideas (okay, I did not mention the pink website one), I even presented the online thing to everyone. It was indeed filled with great people, ideas, food and fun. I even interviewed. For some reason unclear to me. I owe it all to Claire from Tesco that I managed to do it all in one take (or maybe that's because they will cut me out of the film).
But the thing I found most fascinating was the way people educate their children about money. Because Barclay's wanted "to help with our kids", the most prominent subject that emerged was financial education. Children's financial education, and how the bank can help with that.
I admit, I never thought the bank could help with the education of my children, financial or otherwise, but what I found even more confusing than that was the concept of "children's bank account". As it emerged from Monday, my poor little kids are the only two in the whole of the UK who don't have a bank account. When the subject first arose in the group I figured they were talking Long-term saving accounts, which we do have. But I gradually came to realise that children at the age of 5 are supposed to have a bank account for "their money". Children at the age of 5 are supposed to have money. Of their own. Okay so I get why a teenager will want to have money of their own and buy things that their parents deem too expensive or right down silly, but a five years old? I don't get it.
To be honest, I struggle with the subject of financial education. How do you teach children to be "good with money"? what is "good with money"anyway?  I think being "good with money" depends on your whole outlook on life, and what place "having money" have in it. Is money a mean or an end? The problem with money is that it is not "just money", it's much more than that, it's emotional, it's scars we carry with us from childhood, it's irrational fear of banks, it's a security blanket, it's a way to gain power and control over people, it's a lot of things that have nothing to do with the actual number printed on the coin (or note).
We all choose our own way of dealing with the issue of money, but it baffles me why we expect our kids, and some where talking even toddlers, to "save money in a bank account"? Save for what? I don't understand why kids need to worry about money. Kids should be kids. At least when they are five they should. Kids should get presents, not buy them. Kids shouldn't be worried about how much money there is in their (or their parents) bank accounts, or about real and fake designer things, or about how we'll pay the rent. Why are we in such a hurry all the time to make our children grow up faster than they do? They will have so much of their lives to have to stand on their own two feet. Why should they be expected to do that when they are five? or eight?
I don't mean be oblivious to everything. But there must be a middle ground, where you can explain about these things but still make your child feel that it's really not his issue yet. I tell Ron, if you want something, ask for it. He doesn't get everything he wants, for some he waits till Christmas or his birthday, and others I say I will try, but I can't promise (like the trip to Paris). I want him to be able to enjoy these precious years, where he doesn't need to worry about anything.
I don't give them pocket money. There is nothing my kids need or want that five pounds a week will get them, and I don't really go for the whole paying for chores because I was brought up believing that the house is a community that we all are responsible for, and also I think if I send out into the world two boys who know how to do laundry, dishes and meals, I should be paid for it. Not them. And a bit more seriously, obsessing about money (which is what will happen if my kids have any) isn't the way to being "good with money" in my book. I know a lot of people don't agree, I saw it on Monday (where I went with the flow, mainly because the idea of making a super-children's-account won us the competition and we got chocolate. And you know how I am with chocolate). They say it's good for the kids to learn to wait, to be patient, to delay gratification. I say sure, but first we adults should learn all these things.
I don't know how to teach my kids about money. I am not as good with it as I sometimes wish I was. I am not a good saver, I hate budgets, I am terrified of banks, I am afraid my kids will go without, or feel responsible for things that are not their responsibility, I have plenty of my own childhood scars, and so does Hidai (though his are different).
But I do believe in two things - unless it comes with you leading by example, kids will usually not learn the lesson you try to teach them, because do as I say and not as I do never works (unless you hide the chocolate really well), and that everything in life comes with a price tag, and you just choose the one you are willing or able to pay.
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July 22, 2013

Teachers goodbye and gratitude

It's Monday again, which means it's time to write about my Magic Moment  the kid's Amazing Achievements, and my Reasons to be cheerful. Well, this week is a little bit different, because they hadn't happened yet. My magic moment and all will be on Tuesday, when I take the kids to school for their second to last day of school, and give my thank you presents to their teachers.
A card, a box of chocolate and a special Albinism Fellowship charm 
There were many discussions on the merits of teachers end-of-year presents, with many voices calling to relinquish this unnecessary expenditure. With people saying that teachers are "just doing their jobs", that "it has become a race of who will give the biggest and most expensive gift", that "it is just another way for parents to suck up to the teachers", and the like of those. I have to admit, I have pretty strong views on the subject (I admit, I have pretty strong views about pretty much everything), and might have even voiced those opinions on the web (in what I really hope was a dignified manner) and to Hidai (in what I know was less than dignified). My views stem from a few sources, mostly since I think that a little bit of gratitude and appreciation for the people who spend more hours a day with our kids than us isn't a bad thing. And from the fact that teachers aren't "just doing their jobs", at least our teachers never have. Each and every one of the teachers we had a chance to meet throughout Ron's academic years was wonderful. They all went way beyond their job description, and they are all cherished in my heart.
This year was no exception.
As you might know, we moved to London about a year ago and this was the kids' first year in a school in London, and as you might imagine we were quite worried and anxious about everything school related - did we choose a good enough school? the right school? will the kids find their place? have friends? be seen? will they enjoy the studies? be good? etc. We ended up choosing a school we hoped ticks all of our boxes, but you can never be sure, can you?
Our teachers this year, both young men in their twenties, both nice, kind, and sweet. Both gave my children attention, love, and a place they were happy to go to every single day.
Ron's teacher took a child that entered a class that has been learning together for the past three years and made him feel a part of it from the first moment. I've never seen him without a smile on his face and a kind word for every child and parent, and even for Yon; he acknowledged Ron's talents and gave him all the academic freedom and advancement he needs and wants, while helping us with Ron's hatred of being wrong, and fear of failure; he encouraged Ron, managed to teach him how to love reading and writing stories, and use his imagination; he included Ron in the school football team (that is intended for older kids), he was kind and patient, and saw our child from his first day at the school. And he told us at the end of year parents-evening that it was his pleasure to teach Ron, and that Ron has a great sense of humour :)
Orli, Just Breathe - Teachers goodbye and gratitude
Yon's teacher saved him and us. It's as easy and as complicated as that. Yon's teacher was the first one to see Yon's behaviour as something more than just quirky, he was the one that gave us the shake and the nudge we needed to start researching Yon's condition in different directions from the ones the doctors gave us; he was the one who found us the outreach program who helps us; he was the one who worked with us day in and day out to improve the nursery experience for Yon; he is the reason that we are now starting Reception in a totally different state of assistance from the school. Yon's teacher is the kindest, loveliest, most loving teacher, maybe even person, we've ever met, and we will always be grateful for him.
Orli, Just Breathe - Teachers goodbye and gratitude
It's not that everything was rosy, and every single day was a celebration of greatness. Our school has problems and downsides like any school, our teachers were sometimes too headstrong or too "system oriented" like any teacher. There was the time when we were upset with Ron's teacher for not acknowledging him in the merits system in the class, or the time we really wanted Yon's teacher to let go of the labels they all put on him. Or the many times when we were annoyed with the school's tendency to expect you to be able to just drop everything without notice and come in for an activity. Or their weird love for weekend homework.
But truth be told, when I got Ron's report card, filled with all the lovely words his teacher and head wrote, and when I went to Yon's graduation party, I felt that my kids both made exceptional advancement this year, that they are both not the same kids they were when they entered the school, and it is all due, in a very big part, to their teachers. They all had our back, they looked after our kids, they loved them and gave them and us the feeling that they are the only pupils they have. And I am sure each and every one of their pupils feels this way.
Maybe it's not a reason to be cheerful, but it is without a doubt a reason to be grateful.

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July 18, 2013

Being seen

Yon is four, and all of last week I was planning to write this big post, full of superlatives and emotional stuff to make even the most stone-hearted person cry, one that will make up for all my guilt over not celebrating on the actual date, because of us not wanting to disturb his midweek routine, over him not having a proper party (except for a family one at home, because he really didn't show any interest in more than that), over not sending a cake to nursery (that one was because apparently in our nursery you can celebrate with carrot sticks or breadsticks, but you cannot celebrate with a chocolate cake. I am so angry with this dumb decision, but I really don't want my post to be about that. Even though it really easily could), over feeling that his presents weren't the best ones (they included things like a special computer keyboard, and ABC flash cards. No, it doesn't matter that he loved them).
So yeah, lots of guilt to assuage here.
I went along with my plan and wrote a very nice Facebook post about Yon, and was well on my way to write one here. But then I started thinking about the "magic moments", and which part of Yon's birthday was my "magic moment"? which one was my "amazing achievement" for this week?
And you know what I discovered? that my moment wasn't his birthday, or his delight in seeing his presents and cake, or in him singing happy birthday to himself. It wasn't even the moment he sat down in front of the computer and for the first time ever played on the CBeebies website by himself, or his delight in a new hat (last time we had to change a hat it took some getting used to).
Don't get me wrong, I was very happy and proud and everything with all those things. But my moment was about something else.

Orli, Just Breathe - Being seen, Ocular Albinism
Birthday boy
Orli, Just Breathe - Being seen, Ocular Albinism
Traditional birthday cake
My moment is about being seen.
We all spend most of our days thinking "everyone" cares, about what we wear, what we think, what we do. You know the saying "Dance like nobody's watching". It's exactly that, we think we are "seen" all the time. I think those of us who has blogs gets it more than others, and I can't tell you how many times I've heard the sentence "but don't write about it in your blog", and it doesn't matter that I explain once and again that I don't use names or photos other than my own / my kids (who don't care about it at the moment), or that let's face it, maybe 3 people will read it. Hidai had a manager in one of his old jobs that was petrified about appearance - what will "the others" think?
And then, one day, you have a Special child. And you disappear. If people see anything, it's the "problem".
One day, you have a Special child and you find out how much nobody really sees you, or your child. How much nobody really cares about what you think, or do, or wear.
One day you become invisible.
Yon has Ocular Albinism, that impairs his vision, and one of the things we learned over the last year is that many of the symptoms of Autism are present in people with vision impairments (it's called Blindism). We were very much unaware of any of that when the school began suspecting Yon of being on the spectrum because it all happened at the same time - they sent us to a spectrum assessment, the doctors gave us the full diagnosis of the Ocular Albinism, and we were bombarded with big words and conflicting information from every direction.
We were lost. We became invisible. The school had his label, the doctors had theirs, and Yon was somewhere in the middle, invisible to everyone.
He, we, worked really hard to change that, to be seen again as a happy-smiling-smart child, and not as a pair of walking glasses. It's not that the school hasn't helped, it's just that once someone has a label it's very hard to take it off, and it will usually determine the way you look at everything.
It took us the last three months to get here, to last week when I wrote about Yon's amazing achievements. It took me those 3 months to stop and look at my child without judging, without feeling that stab of pain in the heart, without worrying that everything he does is a sign of him being on the spectrum, without feeling like a big, fat, failure as a parent and a person.
And then I wanted the whole world to see it too. To not look at him and see the same thing they saw a few month before. I wanted everyone to see HIM. But that is a very tough trick to accomplish, and might hinder our efforts to get the help he needs.
If you have a Special child you know how it is, you spend endless meetings with the school, the specialists, the doctors, talking about all your child's difficulties, the ones that are there and the ones that might be there later, and you do that because you want to make sure that the "system" acknowledges the problems, or difficulties, and find a solution. We have to tell them, listen we need you to help him find his friends on the playground, because he will lose them and get frustrated. Or, listen if he stands up to walk closer to the teacher / whiteboard / book, it's because HE CAN'T SEE. Not because he has a low attention span. We need them to understand things that are tough to understand and to do that, we need to emphasise the problems. And then we want them to look at him and see all the good things, the improvements, the happy-smiling-smart child.
This week we've had 3 meetings, with 5 different people, who we've had to do exactly that with, so they will be ready for him in reception in 2 months time. We never go light-hearted into these meetings, because as record shows, a Yon meeting is never a good one, and we had a lot riding on it, because we need to introduce Yon and his needs to a new head-teacher and a new teacher, and we want him to move to Reception without any additional labels to the can't-see one we already have.
We came prepared, and armed for battle (so to speak).
And then his teacher, and the outreach advisor looked at us and said - Wow. This child is just. Wow.
That was my magical moment.

Orli, Just Breathe - Being seen, Ocular Albinism
 Orli, Just Breathe - Being seen, Ocular Albinism

Ethans Escapades

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July 16, 2013

I love my baby, but...

"Stop whining. I can't understand you when you're whining". Is what I tell my children, almost every single day. And it's what I say to the computer screen almost every single day. No. Not because I'm crazy (okay maybe a little, I do talk to my computer after all. But the way I see it, the real question is - does he answer? and as long as the answer is no, I'm in the clear), but because I am reading yet another post in yet another of what seems like hundreds of thousands of blogs that grind my nerves. I have the same problem with books, even if it's a lousy one, I can't chuck it in the middle. If I start it, I have to see it through. So I keep on reading, getting irritated more and more, until finally I can put it aside and go on with my life. Only lately it seems that all those blogs aren't letting me go on with my life. They stay with me, and continue annoying me even after I close the computer lid. And I've had a lousy week. So I decided that I rather take it out on the blogosphere and not my kids, or my usual choice - chocolate. Well, I did decide that AFTER eating the Ben & Jerry's so maybe that one isn't entirely true.
I have an axe to grind with my generation. All those late 20s, 30something, early 40s people who, let's face it, behave worse than their kids. We, as a whole, belong to the Shortcuts & Excuses Generation. Busy running from any and all responsibilities like a scared rabbit, busy looking for someone else to blame for our mistakes, for the way our lives turned out, for everything we can, busy imagining how it could've, should've, would've been better in a different city / job / relationship, busy trying to find the shortcuts for how to be rich / thin / famous in 90 days and without working hard, busy telling ourselves that it's fine, life will wait, time will stop, and how 40 is the new 20 or something like that. Well, it is not. And I've had enough.
I know not everyone in my generation is like that, but the very sad truth is a lot of people are, and plenty of them have blogs in which they think it's okay to let loose. Which is absolutely true. Right up to the point where they start blaming their kids. It drives me mad, because, seriously - how dare you pick on someone half your size? What you are doing has a name, you know, and not a really nice one at that. I've come to recognise them at first sight, those posts. They are usually written in blogs that have a huge photo of a baby at the top, and right below they have an about me that says how they are "struggling", "used to be this or that", "scruffy" or "bored to tears". The posts will have sentences like "I love my baby, but", "I sometimes wish I never had my baby", "I don't like my kids", and of course "I sacrificed so much of my life for my baby", they have catchy names like "20 things to do before getting pregnant" or "what you'll miss after having kids","what to do with a toddler while hang-over" or "why your life is ruined". They all advise you to buy very large yoga-pants, never shower, and get used to having no life, no brain and no friends. After all you've had a baby. And they sign it with an all knowing "I've been a mum for 14 weeks. I cracked the whole thing". Which is like saying, yes I went to nursery, I don't need to go to university. I know everything there is to know.
This things annoy the hell out of me. I read it and all I hear is a child having a tantrum. I sometimes wish I could send all those posts to a time-out.
I read these posts and I want to pull my hair out. Because of the mother who got shit-faced drunk with a toddler in the house and thought it's really funny and not irresponsible, because of the father who hates spending time with his 4 kids and keeps having more of them, because of the mother who announced to the world that she hide in the bathroom while alone in the house with her toddler and he doesn't know where she is, because of the mother who said life is over when you have a baby, because of the mother who stayed 8 years as a stay-at-home-mum and hated every moment and her kids for it, and announced that every stay-at-home-mum lives on prozac and wine, because of every mother who announce nonchalantly "I love my baby. But...". There shouldn't really be a but like that. You shouldn't really live your life resenting your children. First of all because they don't deserve it, and second of all because they don't stay tiny forever. They will grow up and know. And the price you will pay then is overwhelmingly high.
I read all these posts and I wonder, when did we stop growing up? When did we stop taking responsibility for our actions? for our choices? Because that is what having a baby is - a responsibility and a choice. Nobody stood with a gun to any of those women's head and said - have a baby now! No, what happened, more than once, is that it fit their schedule. What happened to - you should want a baby with all your heart before you make one? How have babies become one more item on the todo list?
These posts often get a lot of publicity, and a lot of LOLs and LMAOs and other ho-ho-ho and ha-ha-ha comments, and they can give the impression that they are right. That that is the way people should live, or behave or think after having a baby. That life really is this. Are life really over after having a baby? Should you really expect to be filled with your baby's body fluids all day long? Does having a baby really mean you should never wear jeans or make-up? Will you never again have a good night sleep? Does it really matter so much if you breastfeed or bottle-feed? Do you really have to sacrifice to be a good parent?
The answer is no. I don't presume to know a lot. But I do know this - yes, babies are a lot of work. But they grow up. Make sure you do too.
Orli, Just Breathe - I love my baby, but...

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July 12, 2013

My firstie

Last Friday I had an adventure. To say that my life is usually quite boring will be the understatement of the year. I lead the stereotype of a suburbs-stay-at-home-mum life, and I don't even live in the suburbs. I live a short tube ride away from all the interesting places, but the truth is it usually turns out that I spend most of my days gazing outside the window thinking to myself (because I have no other person - adult or child to talk to) that London is as far away from me now as it was when I lived in Gib, or even in Israel. I have so many excuses to give for why that is - you see, I have two kids to look after, Yon goes to nursery until 12 so I don't have enough time, when I go into town I have a tendency to spend money I don't really have, I need to write, and of course how can we forget the best one - I have laundry to do. It doesn't matter the excuse I use, the end result is always the same - I stay at home for days or weeks on end. It's not that I mind it too much actually, I love my life (after all, I chose them and shaped them to suit me) and frankly trying to have non-football or animals related fun with an eight years old who's already started perfecting his teenage growling and bored/broody looks, and a four years old who doesn't like new places, doesn't like not touching things, and does like to annoy us to no end, isn't an easy task. When we just arrived to London, and I had the kids home with me, I tried taking everyone out for Friday Adventures, which Hidai hated because for him Friday is a regular work day, and the kids used as an excuse to behave badly because, well, because they are kids. We did get to see and do plenty of things, but I can't really say we enjoyed most of them. And after a few (unsuccessful) tries I let it go. It's too much money and effort to NOT have fun.
But if you have to know the truth, sometimes I miss going to the supermarket. Taking the risk of sounding extremely weird here, I love supermarkets, I used to love going to Morrisons when we lived in Gib. There is nothing like walking around aisle 8 where they put all the "interesting" things :). I do my shopping online these days. And not in Morrisons.
Not really the point of the post, just a tid bit to make you look funny at the screen and go Morrisons?! Did she really just say that?!
The point was, that adventures are few and far between.
Orli, Just Breathe - My firstie
And last Friday I got a chance at one. I was one of the (not so many) bloggers invited to attend Tesco's Christmas in July event, through BritMums blogging community.
Now, some of you are heading for the close button because, who wants to hear about Christmas in July? well, the truth is, no one. Why would I tell you about products, food or gifts you'll forget by next week, not to mention October? No. I will tell you about me. Much more interesting. For me at least.
You see, this was the first event I got invited to through the blog (okay, let's be honest here, it was the first "work" related event I have ever gotten invited to, if you are not counting Hidai's Christmas party, which I most certainly don't). It was also my first publicity event. Ever. I never thought I would be invited to join one. I mean why would I? Who cares what I think? (hint - not my kids).
The evite (I used evite in a sentence!) said - as I read it, this is a stressful-potentially-heart-attack-inducing few hours in a posh hotel that you've never heard of in the middle of London, and there will be a film crew so your humiliation will be recorded and broadcast to the world. I swear to you, it's word to word what was written there.
On the other hand, it's Christmas. There was no chance I will not go.
So obviously I needed to devise a game plan. First thing is first - I took Hidai with me. I usually try not to leave home without him. Second thing, I rummaged through my closet until I found clothes of the  non jeans kind, and put on my fancy make-up and jewellery. I even had on my "work" heels.
I was a nervous wreck. I forgot the name of my blog. I think the drinks guy (there was a drinks guy, with uniform) was laughing at me. I didn't know anyone. I wasn't sure what to do, who I was talking to, what's my name, and what is my blog about.
And if that isn't enough (why isn't it never enough I wonder), a very nice Australian girl named Claire approached me and wanted to know if I will be willing to answer some questions for the thing? commercial? three hour long film? she was doing for the Tesco YouTube channel.
I can't even talk to a regular person without hyperventilation. I tend to forget all the answers whenever I need to give them. I am pathologically shy. I have a funny accent. I am Jewish, what do I know of Christmas???
So naturally I said yes.
Because I also don't like to disappoint people. But deep down I was really hoping she will forget about me. And so, we wandered around the room? hall? ballroom? filled with Christmasy things and very nice people who absolutely terrified me, trying to find what I will write about come Christmas shopping time. Mine isn't a life-style / product reviews / foodie blog. And really, nobody even reads it.
Yes, the numbers do lie.
As it happened Claire didn't forget about me, and after she finished assuring me for three hundred times that it will be fine, shoved a microphone down my dress, and repositioned me for what felt like at least twenty minutes (about three in reality), I actually went for it and interviewed for the first time in my life. Did I mention I am camera shy? I don't even like it when I have to pose for stills...
I talked about Christmukah (Christmas & Hannuka), what you do in Hannuka, how we celebrate Christmas, and told the whole world (or the Tesco's YouTube channel subscribers) that we eat chocolate for breakfast on Christmas Day.
It was all over in a few short minutes (I needed three takes on the first question. At least nobody yelled "cut!"), and though I swear the whole room was looking at me funny, it wasn't as bad as I thought it would be. And now as a seasoned interviewee, I have some tips Claire told me, and I will tell you for whenever you next need to interview - look at the interviewer and not the camera, smile, and integrate the question within your answer.
And wear clothes where they can easily shove the microphone.
Orli, Just Breathe - My firstie

Claire said they won't cut out all my bits for some reason, so you'll be able to see me whenever the ads for Christmas start coming out. Don't worry, I'll probably put it here. Or they will cut me out.
Thank God Yon's schedule is a great excuse for everything, so after one more person I talked to without knowing who they were, a glass of lemonade and a last glance around, we made our retreat in a very dignified way.
As we were walking around Regent St. towards the tube, marvelling at London in the sun, at the turists, at life, it really struck home how much my life had changed in the last year, how much I've accomplished.
And also, I got a goody bag.

* Just so you know, this post was not sponsored by anyone other the one who sponsors all my posts - Hidai :)
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July 10, 2013

Small Steps - Amazing Achievements. Stopping to look.

There is a beautiful thing going around the Special Needs blogosphere, a weekly link-party where you Basically share a positive outlook on your child's condition, it's called "small steps - amazing achievements" and is hosted by the Blog author of Ethan's Escapades. I found it last week, and it was there this week as well. It's just that this week she invited me to join in. She doesn't know me, other than I think I left her a comment on her blog, and we are now Twitter buddies. I guess she invited all her Twitter buddies to join. I still felt special. It's fun to be invited to someone else's home (you can tell I don't get out much can't you?). She said I can link anything, past or present, that I published and answer the theme of positivity, of celebrating my child's achievements, or progress he'd made.
I can't join her link-party. I can't even make up an excuse, like I usually do with real-world parties, where I usually use the kids and some illness or other, because the truth is, excuses like these don't work in the virtual world, and besides I wanted to be in that party. I really wanted to be one of those "it's going great" parents, one of those Pollyannas walking around the globe, finding every little glimpse of a positive thing.
I combed through my posts, which one should I choose? the one about his first eye check in London when we discovered we've neglected the child (okay so maybe it wasn't exactly like that, but that's the way it stuck in my mind)? No, I know, the one about his EDD test and diagnosis, where we had to watch him go through those three hours of being stuck to the electromagnets? Or maybe the one when I cried while writing? Or one of my favourites, where we got to a regular parents-teacher meeting and left with a spectrum suspicion? The one with the five stages of grief? I know, how about the one that made us understand that it's not a question of "if he needs help" but of "how much help"? Or my last one, where I discovered Yon is part of what is called Invisible Disabilities?
Apparently I don't have even one post about Yon's condition that is positive. Not one. You might say that the one about what people say when they hear about yon's condition is funny. But that's only if you have the same twisted sense of humor like me.
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
Walking to school
The really sad truth is that we try so hard to stay in denial, to repress everything to do with his condition, to just stay on auto-pilot and keep on moving. If we stop we crack. If we stop, if we watch him too closely, than the spectrum thing rears its ugly head, than we can't treat him like the "normal" child he needs to be, than I can't stop crying. In my auto-pilot mode I do things like tell him to be careful every time there's a step. Even the ones infront of the house, that he steps on every day. More than once a day. I know it's stupid, but I can't help it. It's out of my mouth before I can think about it. I didn't even notice it until he looked at me about a week ago when we were just about to go down those same steps and said "mummy said be careful". I love my auto-pilot, my last line of defence, and I am not even the worst one. Hidai just refuses to say aloud that there is a problem (unless we are in one of those endless meetings). But over the last year something in my defence wall cracked. I no longer have the luxury of being in complete denial. I had to learn so much, to adjust to so much, to protect him from so much that I can't sit there in my shell and pretend it isn't so. Part of it I guess is that while writing this blog I read so many other blogs about Special children, in each one of those blogs I can identify with in some regards - the behavioural issues, check; the eating problems - check; the vision - obviously; the fear of mainstreaming - check; the fear of new places - check; the one envious of people who have a pill that will cure them - check; the letters to doctors, experts, specialists - check. It doesn't matter to me if Yon's condition is milder than some. I can still see glimpses of him in every one of them. Glimpses of me. It doesn't let you forget that you can do your best to run, but you really cannot hide, it doesn't let you let-go, it weighs on your soul. I can't tell you how many times I finished reading these posts with tears streaming down my face. I feel I have to continue reading, I have to understand more and more this new world we are living in now, and as I gain more knowledge, more information on special needs, on Albinism, on Special children, I think you don't even realise it - how much your world has changed - until you are faced with "outsiders", with people who aren't living it daily, who looks at you funny when you talk special needs, doctors, systems.
And still, I like to pretend that I don't see or that I don't care that he stands an inch from the TV, or that he has to crouch down to read the license plates of cars, or that he doesn't see some of the animals in the zoo, or that he once again mis-recognised someone; I still like to pretend it's okay to postpone a child's birthday to the weekend and not tell him it's today because it's going to be too much out of routine for him; I still try not to think about the meetings we have planned in the school, to put off preparing for them until the last minute, I still declare every such day a Yon day, where nothing else gets done.
I try not to stop and think. Not to dwell, to be practical, to make lists. Because if you research, if you have lists, or a plan, than you don't need to stop and think. But if we don't stop we miss the tiny ways in which he is making those small steps and amazing achievements.
So I stopped. I looked without judging, I enjoyed my child for the gorgeous, smily, funny and smart little boy he is.
Yon learned all the letters - signs, sounds and phonics by himself. I can't tell you how many times I tried to teach him over the years (yes, I know that you are not supposed to teach letters before a child is three. But Yon has the misfortune to be born after Ron. So my comparison base is a little skewed), and he wouldn't. But the minute he decided he wants to, he took the iPad and listened to all the youtube songs grandpa put there for him, and within a week he knew it by heart and has decided it's his favourite thing now.
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
in the library
Last week he decided on a new game, reading licence-plates. And he can do almost all of them. I was so happy to see him succeeding in reading the letters, we stopped at each and every car (it's a problem for him because of their location at the bottom of the car, and because he can't stan right infront of them).
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
He saw the sign outside the building complex, that is written a bit high (he can't see well if it's high, so I wasn't even expecting him to try. But he did, and he succeeded).
He saw some of the letters and numbers on the electronic sign inside the tube when we were there on the weekend (again, very high. it never crossed our mind that he will try, let alone succeed).
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
on the tube
He went around the house looking for letters.
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
letters at the zoo
He participated nicely in golf on Sunday - waited for his turn, did as was told, managed to hit the ball, supported Ron, and had so much fun.
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
He can turn on the TV with the Sky remote (the one that you need to press three tiny buttons on for everything to work properly).
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
He can use the keys and open the front door by himself.
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
He can operate the WII by himself, which is very tough with the pointer moving all the time.
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
He used a computer mouse for the first time by himself. Because he wanted a specific song on the iTunes, and he knew how to find it...
He managed to balance himself on the ledge outside the house, which had always terrifies him.
Orli, Just Breathe - Small Steps - Amazing Achievements. Stopping to look. Ocular Albinism
He ate 3 teaspoons of salad without crying / fighting / gagging / feeling sorry for himself.
He was willing to try any food we put infront of him, before declaring it "not good".
All these he did over the last couple of weeks. And all of these I didn't really notice until it crossed my mind that I don't have anything positive to say about Yon's achievements.

He has achieved so much my Yon over the last year. So many things that for a regular child won't be considered achievements at all, just regular things kids do. So many small steps. Writing it all down like this makes me realize how much progress he'd made. How each of those small steps was lost in the fog of the auto-pilot and the routine, and how all of them together make for a very big achievement.

SuperBusyMumEthans Escapades

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July 8, 2013

Celebrating Summer

Summer has arrived to London, and not in date only. It's been warm (without the compulsory "ish"), it's been sunny, it's been sportive. Truth be told, I've never been a huge fan of summer. Growing up in a country that sees the 30 degrees mark come May, together with a stickiness that can't be explained or described, you learn to appreciate the winter, or rather those three minutes between winter and 30 degrees. You have to understand, what we called "winter" is what is fondly referred to here in the UK as a "british summer". With less rain. I think life in London made me look at summer differently though. First of all, because I saw what a real winter is... But also because I saw how the British treat their summer. I love it how British people treat their sunny days, so I made a list for you all to see what seems quirky to us expats -

The newspapers have the weather on the front page (unless there's Wimbledon, or a royal baby of course);
Women wear dresses. I know it's not weird for you, but where I come from dresses are for religious people. "Normal" un-religiously-devoted people just don't. Also, it is so humid everything just kind of stick to your body, so it's less fun. In fact, I was just telling Hidai yesterday that it's amazing that I needed to go all the way to the UK to start wearing proper summer clothes. I am now the proud owner of two summer dresses;
Guys take off their shirts everywhere. Or maybe it's just around my house;
People are smiling at strangers;
People say things like "it's too nice outside to be at work";
People sit around with their front door open, to "let the sun in";
People complain about the weather in a very British way;
Every green place is good to pretend you are near the sea - wear your bikini (or go topless), get your folding chair or beach towel, pack a watermelon picnic (and wine. obviously), and go sit on the grass outside the house, or in the nearest park, or on your balcony (I did take a picture of how our central garden looked yesterday, but I don't think it's fit for a family blog);
There are posts like this one;
Everyone posts photos of their weather app, you know, to have proof;

I guess it's contagious, and so we found ourselves outside for most of the weekend. We were lucky enough to be invited to try out some of the activities that are offered on the Love Cravendale Loyalty Scheme. And when I say "try out" what I really mean is "stand around watching the kids do things". Not that I'm complaining, they were so exhausted by the end of the weekend, that today Ron informed me that it isn't fair that the weekend is only two days long. Raised him right.
The loyalty scheme has lots of activities to choose from, so naturally when the (very) nice lady called me, I told her to give me only girly things so I could have fun. As if. I chose three boys suiting activities - football, zoo and golf. The football one we did last week, and you can read about it in last weeks' Football and Life post.
And this week we had Battersea Park Children Zoo and a golf Lesson at the Bush Hill Park Golf Club, and the school's summer fair. Lots to do.
Now, we live in one of the more central parts of London, so we are used to everything being a SHORT tube ride away (up to 30 minutes is short for me). In fact, it was one of the main requirements when choosing where to live in London. We got here from Gib after all, and we were used to everything being in a walking distance. Also, let's face it, we are pretty lazy. That is why we are not used to being the ones that has to travel a long time to get somewhere in London. Last week took us to Wembley area (not to Wembley itself though, to the disappointment of my boys), and this week we went to Battersea and Enfield. All these places are about an hour drive for us, and all of them reminded us of how big London is, how different it is to live in the "suburbs" and not in the centre, how many different things there are to do in London, and how much we hate waking up early on the weekend for anything.
Orli, Just Breathe - Celebrating Summer
The Battersea zoo is really nice if you have young kids, as it has a really good play-area for them to enjoy, and plenty of benches and places to buy coffee. I don't know if the coffee's any good, but there were many people drinking it, so I asume it is. Yon is animals crazy, and though he was a bit disappointed at the lack of a lion, he enjoyed the monkeys and donkeys. And squirting water at the Emus. It was a lovely day and we were there early enough so all the animals were out and about, and we got to see all of them. It is always a bit heartbreaking going to the zoo with Yon, as there are some animals he just can't see, mainly the ones that has good camouflage colours, or the ones that are up high, or the ones that are too small. It's usually also involves me sounding like one of those too uptight, too protective and all around nag mums. "Yon be careful" "Ron go with him" "look where you're going" etc. I can't help it. It's automatic. And also, maybe because he can't see too well, he hasn't yet developed the tendency to look where he's going...
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
On the way back from the zoo to school we stopped at our local library, and are now the proud owners of 3 library cards. The kids and I checked out a book each. Yon's isn't really a reading one, but he already went through all of it; Ron chose Goal! (a book based on the movie by the same title) and has already almost finished it; I chose a book also. Because I can't go into a library and not take out a book. It's blasphemy. I haven't even opened it yet. But I did put it rather nicely next to my bed. Maybe that way I will read it while sleeping.
Orli, Just Breathe - Celebrating Summer

The Summer fair at school was great for those of us who like that sort of thing (Hidai & Ron) and hell on earth to the normal people in the family (Yon and me). Ron is such a big boy already, and he wanted to run around the playground with his friends unsupervised. At least until he found the football competitions. Yon was completely freaked out from the amount of people, noise, and mess. He and I went home after a (very) short time, and left behind the crazy half of the family to help around and enjoy themselves.
Orli, Just Breathe - Celebrating Summer

On Sunday we once again woke up with an alarm clock. Seriously. And went to try our hands at golf. As absurd as it sounds we've never tried golf. Other than mini-golf (and that was some years ago). We got invited to a Members Only Club, which I was so excited about because... Well I'm not really sure, maybe it's the whole aura around it or something. An aura they are working hard on preserving, and I am guessing the reason they don't have a pedestrian entrance. No one apparently walks in. You drive. Well, we went in behind a passing car. After we got directions from the members only that were playing, we got to the right place and the kids joined a Sunday morning golf course, that was taught by a very very nice young (very young) man, who has infinite tolerance, a good sense of humor and ability to work with special needs children. He is also an Arsenal fan, which is even a better testament for his character according to my boys. 
Ron had a problem because he is still struggling with the whole "you can't be perfect in everything on the first time" thing (it really doesn't help that his ability in the football things he needed to work on from last week, did get better after a couple of serious training session, which he decided to up to 30 minutes a day now), I thought he was rather good, especially if you take into account the fact that he never played it before (apparently the WII doesn't really count). Much to our surprise and delight Yon had a lovely time, he waited patiently for his turn, he let the instructor show him how to hold the club, how to hit the ball, and he was happy for Ron when he did well. They hit some balls, collected them and played a two holes game. They loved every minute of it, and Ron said it comes in second to football. A high praise.
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
Orli, Just Breathe - Celebrating Summer
We got home in time to watch the Wimbledon men final on the TV, and once again we were really surprised by how much interest Yon showed and how much he enjoyed it, and of course after Andy Murray won (and gave the best winning interview ever) the boys went on to play golf and tennis on the WII, which was another great step for Yon, who managed to operate the WII by himself for the first time, and whose golf score has improved dramatically.
I am very thankful for the Love Cravendale Loyalty Scheme people because they made us go out and do things we wouldn't normally do (even though we had to wake up early on the weekend), and because those things had led us to see how much Yon has grown, and how much his attitude and behaviour has improved. It's a great way to start any week, but especially his birthday week.
Orli, Just Breathe - Celebrating Summer

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