The last hurrah

Today is August 30th, which can only mean one thing - I have survived another August. Maybe it sounds too dramatic, but for me, that is exactly what it is. You see, you will probably won't remember, but I had lovely plans for this summer. And one by one they all fell through. All that I had left was survival. All I had left was the fact that time moves on. No matter what you do (or don't do), how good (or bad) your day was, how many things you still have on your todo list, time never stops.
I know, some of the people reading this will think I am being too dramatic. I don't know. Maybe I am. It will explain where both my kids got the drama-queen gene from. Truth be told, it's the forth time I've started this post. One was to sappy, one too angry, one too boring. I am not really sure where to go with it. Should I go with the sad / the guilt / the angry? I don't want any of those, I already wrote those. But than I am left all alone with happy. Happy??? that can't be true. There has to be someone else. Anyone?
So after a three hour break from writing (Candy Crush? No. I didn't play Candy Crush on the computer, iPhone and iPad. Of course not), I decided to do a summery of summer. Because it sounds funny in my head. And because I thought, maybe if I write about everything that happened here this last month, I wouldn't feel so much like a summer-failure.

On the blog front, 
* I wrote 12 posts (including this one), which is my record for one month, including my new favourite post, that somehow managed to sum up my summer before it really started - Positivity is Overrated.
* I wrote three guest posts, which were the first guest posts I have ever written! One for my new blogging friend Mrboosmum, who needed a pick-me-up while on her holiday (I think that is why she likes me. My life is always more crazy than hers); one for Suzanne of 3childrenandit who left on a holiday and was looking for a funny post about parenting, and one for Mum-Network about my photography obsession.
* I wrote a post about our life in Gibraltar, to support Gibraltar in a time where it is struggling against Spanish aggressiveness. It was my first current affair piece, and somehow it became my most read post ever, and is worth reading just for the lovely comments I got from all the people in Gibraltar who read it.
* I opened my first linky, Dreadful Days, which had 9 wonderful posts (okay so two of them are mine, but they are still great) about the moments and days that we all feel that we can't do it anymore, that the masks slip away, that we need a hug.
* I finally got around to doing my "blogging love" section of the blog, with all the blogs I love reading (ok, not all. I know I missed a few because of disorganisation and kids shouting in my ear. But it's a starting point).
* I participated in my first ever blog-meme. Of course I didn't do it right. When have I ever taken a straight question and actually answered it? (rhetorical question).
* I participated in Mumsnet "this is my child" campaign, with a photo of Yon and a post about invisible disabilities.

On the learning front,
* Ron read about nine books this summer, finished all his Bond 11+ and maths booklets, and learnt to play Sudoku. It wasn't easy.
* Yon, after a rocky start and lots of fears & guilt on my side, settled into the lunchtime study hour very nicely, and finished one maths booklet, and 3 writing ones (ok, he was more scribbling freely, but still). And also learned how to use the computer, with his special keyboard and mouse, and lastly - he learned how to read whole words, and how to write a few.
* We bought new shoes for the boys and made sure everyone has enough clothes to start the year. I can't wait to see my baby in school uniform (yes, there will be tears).
* We kept the kids bedtime, so will not have too much problem getting them back on tracks, and also stopped Yon's midday naps, so he is ready to go to school until 3:30pm.
* We started making the yearly nagging-schedule. Every year it's the same question (why, why, why do we have to change a teacher every year?!) - when should we start stalking Ron's teacher? When is the right time to start with the "but what about his extra work???" questions? I never know. But usually after the first half-term. And this year we have to add Yon to the list, and there we need to stalk the school head-teacher the children centre head-teacher, the school SENCO, the children centre SENCO, the outreach advisor and the teacher. Yes, we definitely need a schedule.

On the holiday-fun front,
* We took the kids to a dinosaur Mini Golf, which I can't emphasis enough how much I recommend.
* We went to a pick-your-own farm, to teach the kids food doesn't grow on Tesco shelves.
* We saw at least one movie every day, including Monsters University, Despicable Me 2 and The Smurfs 2 (I cried at the end of the Smurfs. Really emotional movie).
* Hidai & Ron went to Arsenal Members Day, which after they've been there for about 6 hours, Ron concluded with a "we did almost everything. It was ok".
* We took the kids to Ikea. It actually was fun for them. Less for the employee who needed to tidy up all the beds. We also got an explanation from Ron about "the olden days" when they used a blackboard in class...
*We (ok Hidai, but I am still taking credit) played air-hockey and taught the kids how to play pool.
* We took the kids food shopping. Well, as I do most of my food-shopping online it is a treat for everyone to go to any supermarket, but mostly to Golders Green, or as we fondly call it "Pitta land".
* We went to a food market. We usually don't do that because it is not fit for a Yon, but we've had some of Hidai's family visiting so we went with them. We saw a pirate ship, and got real Baklava. If you've never ate real Baklava, please do. it's heaven with a pistachio.
*We took the kids on a bus tour to parts unknown in London. Ok, so we had to drop off some papers somewhere, but we still called it an adventure (and took them to Yon's heaven - the store on top of the Rainforest Cafe, and bought them McDonalds).

Travelling in style

On other fronts,
* I did 3,000 loads of laundry (no, apparently being on holiday does not mean you wear less clothes-per-day).
* We dealt with enough bureaucracy this month (on all fronts - health, finance, immigration) to kill an elephant. Or at the very least bore it to death.
* We sold our gym membership, because we figured - if we haven't used it in 6 months, the least we could do is stop paying for it.
* Ron has moved to the realm of big-mac meals in McDonald's. Bye bye happy-meal.
* Ron has announced me to be "an embarrassment". Just because I did a little victory dance in the house. I took it well. Sure, it was to be expected. So I just told him I will bring some of his baby pictures to show around the school on his first day. Or I can dance. Or both. He did not take it well.
*We finally got Sky to send a technician to fix our internet. Seeing how it took them "only" three weeks, I count this one as an achievement.
* I beat eBay, who overcharged me and wouldn't back off and admit their mistake. In fact they blamed me and threatened me and closed my account. I wrote 20 emails (or more), 3 public Facebook messages, and a few private ones, and they caved. I won my small war against internet bullies.
* Football season has started. Rather badly for Arsenal, which means rather badly for me.
* In spite of some worries, kids have not turned into iPads thenselves

On the not killing anyone front,
* I am happy to report that all kids, parents, and house plants are still here.

And as this weekend is dedicated to "get the house ready for normalcy and grandparents visit", we decided Bank Holiday monday was the time for one last fun-day-outing, or "the last hurrah" as my friend Laura called it, so we took the kids to Kew-Gardens, to see the IncrEdibles (how do you call it? Features? Exhibition?). If you haven't been, its very recommended, they show you plants that you didn't know are edible, and there are also a giant pineapple, carrots to jump on and mushroom to hide under. We've been trying to go there for a few weeks, but every time we declared it Kew-Gardens day, it rained. Luckily this Monday was lovely (after it rained most of Saturday & Sunday), and we managed to survive the hour on the tube and get there. I am not a big nature fan, I have to admit (I know, a shocker) and parks and such are not my cup of tea (never ask me what I think about camping), but the kids love it, they can run around, the IncrEdibles things were magnificent and Yon could touch things. Taking Yon to places where he can actually touch things and we don't have to run after him continuously saying "NOOOOOOO! Don't touch this!!!!" is always a treat for us, and a rare one at that. The gardens themselves, if you haven't been, are gorgeous and picturesque and full of people, and are definitely worth a visit (and no, nobody paid me to say that. Unfortunately).
We finished the day with some pizza and a rare night of TV watching and no work.

That's it people. My summer summery. I do feel slightly less like the worse mother ever after all this. And Ron found this post hilarious, so I have that. I thought about printing t-shirts "August survivor" and selling them on the blog, but then I remembered - hey, we already have those. They are white, and button-up, and go with grey trousers - school shirts! If you survive August you get to go to school!!!
And maybe I will get to go to Starbucks.

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Is it tasty or not?

I don't think I ever really wrote about Yon's eating problems. Mainly because usually I would rather die than admit the kid has an eating problem. Funny isn't it, that I am willing to talk about so many other things related to his Ocular Albinism, but not this. No. Because I don't believe in kids eating problems you see. When I was a young mum and I thought I knew everything (well, that isn't really true. I usually was the first to admit that I have no idea what I was doing. I still am. The fact that Ron survived those first years is a testament to his character, not to mine. But I was still very opinionated), I thought, no - knew, that you never fight with children about food, and I also thought all babies were like mine. In a lot of things Ron wasn't an easy baby, but he loved, still loves, eating. As soon as he discovered real food, he was in love. He eat slowly, methodically, and most importantly - healthy. We defended his right to eat what he wants, how much he wants, for however long it takes (and it takes a long time). He rewarded us by choosing healthy food, never over-indulging, eating sweets moderately, and willingness to try new things (usually). It is true that he once went on meat-strike, but we let him be and after a few weeks he got back to eating everything, and that he usually likes to eat the same foods and in the same order, and that he has a tendency to eat things like "5 cherry tomatoes" or "6 olives", but with every year that passes he becomes less obsessive about thins things and likes even more foods.
So for all these early years I could sit comfortably on my high horse saying things like "it's the parents fault" or "there is no such thing as a child that is born with an eating problem" and my beloved "never fight with kids about eating, because you will create a serious problem instead of letting it solve itself". I didn't believe in forcing kids to eat, in making them try things, in cooking different things for different people. Oh no, I was as cocky and judgemental as they come.

Ron has progressed to a real grownup "BigMac" in mcDonalds  

Then I had Yon. And like in many other areas of my life, having a Yon taught me humility. Yon was a fine eater (should I say drinker?) as a baby, and maybe he wasn't a great eater when weaning time came, but he wasn't the worst, and we've been trying to not compare him (too much) to Ron. He usually loses, poor Yon (ok, that is not entirely true, but you compare where you think there is a problem, and in these areas he loses). So we let him dictate the pace, and slowly he moved himself to solid foods. And if his diet was a bit restrictive, we chose to ignore it and think of him as "a fussy eater" or "just very set in his ways".
I don't know if things deteriorated or just stayed the same and didn't improve, but in March this year, when he was almost four, the situation, that we have just started feeling was a tad worrisome was this -
Yon still had the same "cup phobia" that he developed when he was two years old. We managed to switch him to using a straw instead of a sippy-cup, and the children's water-bottles, but no cups. Every time he would sense that we want him to try a cup he would lose it.
He got hooked on certain types of food, and won't try new ones. For months he would only eat one type of breakfast cereals. No matter what I bought, he would only eat "cookie crisp".
Lunches were better, with meat and a side dish of pasta, rice, or mashed potatoes.
Dinners not so much. He would only eat one type of bread, those brioche-rolls from the supermarket, that are as close to brioche as I am to being the next queen, one slice of cheddar cheese and one slice of a specific kind of turkey-breast-slices. And an Aero chocolate mousse. He ate it every day and in the same order.
For snack-time he would eat chocolate cakes, and certain types of biscuits.
He loves water, so that's good.
He wouldn't eat anything at nursery, not even sit at the table when they had snack-time.
He didn't have any fruits and vegetables in his diet. Nothing. He wouldn't even taste.
He didn't try any new food, so we couldn't introduce new things to his diet. He would just freak out and start yelling and crying. Even food he already ate and liked, but didn't have for a couple of weeks was a problem.
The food had to be arranged in a certain way on the table, or he freaks. He won't eat at all if it's not organised correctly.
And yet we closed our eyes, we preferred to go with the "fussy eater", with "he will grow and be ok", with "Ron was obsessive about his food and he grew out of it", with "you don't fight with kids about food. It's a war you'll lose". We went with denial. Because, like I always say - there is no place like denial-land. Of course that was before. Before we had the "is he autistic" issue raised. Before we had the full-vision diagnosis.

Cookies 

In March, after all hell broke loose, when everything came crashing down around us - the spectrum questions, the Ocular Albinism diagnosis, the shattering of denial-land, we decided to stop pretending that the kid doesn't have food issues. We knew nothing about anything in March. We didn't know vision problems and autistic traits are linked, we didn't even know how bad Yon's eyes really are. It took months of tests to figure this one out, and I think that next time we'll go to the doctor's, they will find he has even less vision of what they think. He guesses the last line he can see.
All we had was the crashing wave of guilt because we failed him, and all we knew was that we have to prove he is not autistic. That he doesn't have two conditions. We had to prove that we didn't fail as parents because we missed all of it.
Improving eating habits is a journey where you know where you are going from, you know where you want to be, and you have no idea how to get there or how long it takes. But it is a journey you must embark on nevertheless.

Friday night dinner

We started our journey with the cup. To this day I am not sure how I did it. Why he didn't freak out when I gave him a cup without a straw and said "Yon, you will need to drink out of a cup someday, so why not start today". Those two sips he took led to a day of celebrations. I am trying to find the right words to describe how happy they made us, deliriously happy. When your child does something you never thought he will be able to do it is a different kind of happy than "reaching a milestone". It is happiness combined with being relieved combined with tears.
But that was just the first step, and as it happened the easiest of them all.
It took us weeks to completely move him from using the straw to drinking out of the cup, and being willing to drink in nursery.
It took us a long time to introduce the "you have to try" rule.
It took 3 months for him to agree to at least sit down at the table in "snack-time" in nursery.
It took us a few months to make him eat three tea-spoons of salad without chocking, gagging, crying, shouting, and stretching dinner for over an hour.
It is still a battle every Friday to eat the challa (special Jewish Friday bread), and not his regular rolls.

"eating" pizza.

Each step was small, almost invisible. Shadowed almost completely by the things that we couldn't get him to do, by the things we had to do in order to move forward. He added a few things to his diet, sure. But he still has to eat them in a certain order; he still freaks out if the table isn't organised the way he is used to; he will try food, but will almost always say "not tasty" afterwards; he would sit at the table in nursery, but he won't eat; he is still very awkward with using the cup; we still have to make him try anything new; and our main concern - fruits and vegetables. He still won't eat more than 3 teaspoons of salad, and even these ones are a struggle every day. He is willing to taste fruits  if we make him, but he won't eat more than one piece.
And we do, we make him eat. We fight with him if he refuses, we threaten, we punish, we do all the things we swore we will never do in regards to food. That we foolishly thought no-one needs to ever do. We do all that because we have to, because it moves him, in baby steps, down the road to eating better. And we hate ourselves for it. We feel guilty every single time, we cry with him (on the inside) every time we see how much he struggles, and we hate what we became.
And that is why I never talk about Yon's eating problems.
My biggest wish is that he will like a fruit. One fruit. Any fruit. I want him to ask for it, to voluntarily eat it, to one time ask him "how was it Yon - tasty or not?" and get a "tasty!" in response, and not the usual "not".
We tried every fruit there is, we tried taking him to buy fruits (which did not go well for the first few times), we tried showing him how much we all love it, how much Ron likes it. Nothing helped. He would eat one piece if we made him, and never touch it again.
Until I bought Sultanas. Our advisor said sometimes dried fruits go down easier with kids that have food issues. So I bought them and completely forgot about it.
A week or so later the kids wanted "snack time" and I found the sultana bag and decided to give it a try. Yon ate three, because I made him, and said a big "no".
But Ron and I liked it, and seeing how it's better than snacking on Maltesers (for me. not for Ron), I bought a new pack. Which of course no one wanted to share with me. So on Saturday, when the boys were watching the football and I was on my computer I took a bawl of sultanas to eat while reading people's posts.
Yon, who isn't a big football fan, showed in my room and immediately zeroed in on my bawl. "I want snack time mummy" he chirped sweetly, hoping for cookies or cake. Sure, i said, you can have what I had. And filled the same bawl with Sultanas. He took it, quite suspiciously, while saying "I want some too, I don't like it". I stayed quiet, and he took the bawl and flopped down on the couch in front of the TV. He ate all of them.

eating the sultanas

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Life in Gibraltar

Life in Gibraltar was the name of the blog I was writing while we were living in Gib (this is how everyone calls Gibraltar, and how I think of it. So this is how it will be called here). Don't go looking for it, it's hidden, and in Hebrew :) but I was taking a trip down memory lane the other day when I was trying to find the answer to a question about something that happened while we were in Gib. It was so weird looking back at myself, my life, what I wrote about. That, coupled with the fact that Gib is constantly in the news these days (at least in my news it is) because of the whole mess with Spain, made me break my rule of not writing about current affairs, and write about Life in Gibraltar.
I have to just say here, that I don't write about current affairs because I don't belong enough anywhere. I can't write about things in Israel, because I left, and lost my right to have a voice. I can't write about the UK because I didn't grow up here, I didn't go through the process of becoming an adult here, so I think it is rude and uninformed of me to try and say "I know better" or "I know at all", when I clearly don't. Also, I have learned that there is nothing that causes a rift and an argument more swiftly and easily than politics (except maybe for Football), and this is not that kind of blog. And lastly, one of the main things I love about being an expat is that I don't "have to" listen to the news, read the papers, follow current affairs. I can (and do) choose to do all these things, but I no longer have to, like I did when I lived in Israel, and with years of it under my belt, I love the freedom of having a choice.

The Rock

But Gibraltar is a different matter. It's not that I can claim too much knowledge of the history of Gib, we only lived there for 2 and a half years, from December 2009 to June 2012, and they were the happiest and hardest years of my life. I can't tell you about its history, or cite economy or politics, I didn't have a right to vote, and to tell you the truth I didn't really know or care about any of these things when I lived there. I can tell you that I support wholeheartedly the Gibraltarians' right to remain British, I think everyone does except the Spanish Government. I can tell you that they are British, that they love being British and that there is no excuse to the way the Spanish government is treating them. But I can't really tell you about the politics behind it any more than the newspapers and the news can.
I can tell you about Gib. About what it was like for me, living in Gib. Not many people know where Gib is. I know that before Hidai started working for his old company I didn't. It is a tiny place located in the South of Spain, and is actually a British Overseas Territory (I think I got it right).
And it is like no other place in the world.

This is where Gibraltar is

Gib is hard to explain, and I really hope I will do it justice in my post. I really want to. It deserves it.
When you read anything about Gibraltar you usually read two things - the Rock & apes and the runway. It's understandable I guess, because the Rock is magnificent, the view from above is breathtaking, on a clear day you really feel you can touch two continents. And the apes... Well, I can't say I am a huge fan, especially since one stole a bag full of Yon's toys right from my baggy, but as I did get the bag back (with the toys untouched) I am trying not to hold it against all of them.
And the runway, well it is kind of funny, wonderful, really annoying (depends on how in a hurry you are) to see how they shut down the main road in & out so a plane could land / take off.

The ape

But for me, Gibraltar is so much more -
It's the quiet. You get a certain kind of quiet in Gib, that I haven't been able to find anyplace else. It comes together with "manyana". What's the rush? There is no rush. You're in Gib.
It's the work-life balance, that means all dads are in every school / nursery thing there is. Everyone leaves work and attends every sports day, parents meeting, assembly. For the first (and only) time for us, there was no work on the weekends, on nights, on holidays.
It's the distance. Everywhere is measured in walking distance in Gib. Many have a car, we got one after a year and a half, but walking is still what you do most of the times. Because wherever you want to go, it will probably be easier and faster on foot than braving the narrow streets and dead-ends. Especially when you're new.
It's the blue. I love the sea, and have always lived close to it. But never like this. We lived right on the Mediterranean. And when I say "right on" I mean every single cruise ship that entered Gib waved hello at us. There is no green in Gibraltar, except on the Rock, but there is so much blue and it is breathtaking.

This is our old apartment

and this is the view

It's the people. We have found in Gib friends that became close friends, that became like family (can't name you people. It's a public space. But you know who you are). But it's more than that. People accepted us not as expats, not as strangers, but as just normal people. When Ron was on the football team they were just two kids that weren't native Gibraltarians - him and another Israeli boy. No one ever made us feel that they were "less", or "different" or uncomfortable. I can't say I know all Gibraltarians, but I can say that out of 30,000 you end up meeting quite a few over the years, and all of them were friendly, warm, helpful, nice. They were just... Gibraltarians.
It's the lack of bureaucracy. It's amazing. On the one hand they will go by the book (especially in regards to closing times) but on the other hand, they will do their best to try and help you with whatever you need and they can. When we were looking at moving to the UK and needed help with understanding the process we just went to the governor's office. You know, as you do. They actually sent someone to sit with us, go over the paperwork and explain everything.
It's Summer Hours. On paper it's supposed to be - start work earlier (or at least at the same time) and finish earlier because, well because it's summer and you want to go to the beach. In reality it means that everyone starts work late, and finish it early. And most of them come to work wearing bathing suits. We've never worked summer hours, and there are times in which you find it a bit annoying, but just the notion itself is enough to put a smile on my face. Summer hours.
It's the weather. They say Gibraltar gets 300 days of sun a year. When we got there in December 2009, it rained for 4 months straight, and you can't ignore the weird climate phenomena that happens because of the Rock - the fog and the wind. But mostly Gib has the perfect weather as far as I'm concerned. Really hot summers, not really cold winters, and nice autumn and spring.
It's the everyone knows everyone, and you can't go anywhere without knowing most of the people on the street, in the place you go to, on the way back. It's a small place Gib, and even us outsiders ended up knowing quite a few people. The locals? They know everything about everyone.
It's the Morrisons, because you have to love the Morrisons. It's the main supermarket in Gib, the biggest and the only one I know that imports everything from the UK. The rumour is it's the most successful Morrisons branch there is. I loved the Morrisons. I loved living across the street and taking the trolly home (and back. Of course we returned it), I loved how every time you entered it it was an adventure - what will they have and what you won't find (like the big milk shortage, when we learned to always have long-life milk at the ready), and then you have aisle rearranging when everything changes place suddenly, and aisle 8, or how I liked to call it - magic land. You never know what they will bring to aisle 8 (it's the seasonal things aisle), and because I still miss it.

aisle 8 on Valentines

The Morrisons

It's the language. And the accent, and the mixing of English and Spanish in a way that only Gibraltarians understands. For us foreigners it's always seemed so impressive, the ease and speed in which Gibraltarians use both English and Spanish. They do it on Facebook too.
It's the school. Because we brought them a non English speaking child, in the middle of the year. And they accepted him and made him feel loved and at home from the first day. Because the head-teacher, deputy head, and the Reception teacher went well beyond their call of duty, and gave him & us the peace of mind we could only dream about before we arrived.
It's the tolerance. As small as Gib is, and it is tiny, it is full of expats. Mainly because when you get there you fall in love with it and want to stay (and that is why so many people will start their story with "I was just here for... And I couldn't leave. I love it here"), and because there are a lot of gaming companies there that needs people with different languages and knowledge. And it is amazing how at home everyone feels. How accepted.
It's the safety. Nowhere in the world is as safe and secure as Gib. It is so liberating, and different, and fun living like this. Real Gibraltarians don't lock doors. Or cars. Or bikes.
it's National Day. Where everyone's out on the main street, wearing red and white (usually with a "Gibraltar is British" slogan), drinking tinto-de-verano (summer red wine) from as early as nine a.m, eating calentita (the national food) and talking to everyone. I can't describe how much pride and love goes into National Day, but I can say that I loved being a part of it, even if it was for a short time.
And the fireworks. National Day fireworks are done from the pier in front of our apartment. And they are magnificent. Every year is a show to be remembered. But I have to say the first time I saw the other fireworks I was amazed. In Gibraltar, everyone lights fireworks, from their roof, from the Morrisons parking lot, form their balcony. You always fear someone will burn the whole place down. But no one ever does.

 

I could go on, there are things I didn't put in, but if I have to choose just one thing to describe Gib, it will be that Gib is existing in the present and in the past at the same time. It is as if you are living at the same time in 2013 and the 80's. And it's magnificent. I don't think there is anyplace like it in the world. I loved living in Gib. It has its downsides, like everything and every place, but for me, even though we've only lived there a short while, it will always be home.

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This is my child

"This is my child", is a new campaign to raise awareness to children with disabilities in the UK. The campaign is intended to raise awareness and bust myths about children with disabilities, especially invisible disabilities and in those, disabilities that cause behavioural difficulties.
I want to support this campaign wholeheartedly. I should support it. I had every intention of supporting it. I even sent in a photo of Yon, and he's in there in the middle of the photo-collage. A big part of the campaign is personal stories, and people started writing posts and stories and tweets about their children, about their experiences, and about everything they go through every day, and what bother them most about the way people treat them and their children. The stories are heart-wrenching. They truly are. I sat here crying with each and every one of the mums who shared her story. And once again I felt I don't completely belong.
Why don't I belong? I should belong. After all Yon has OA. And OA is an invisible disability. But that's the thing, no one even knows what OA is. OA stand for Ocular Albinism, which is a rare genetic condition that affects eyes and vision. I use the term "rare" because if you look it up you will find that there is no definite number, like there is no definite cause (they identified some, but not all DNA), like there is no one "doctor recommendation" (there is no real treatment anyway). Yon's eyes are lacking the melanin pigment. Such a small thing isn't it? It just means that the back of his eyes is lighter than it is supposed to be. But it actually means so much more than that, because it means his eyes did not develop correctly, and basically he has a set of vision problems that can fill the whole page. To make it short, he has about 50-60% vision of what you and I have. But it doesn't end there. Did you know that vision difficulties goes hand in hand with behavioural difficulties? and that those behavioural difficulties has many things in common with autism? Neither did we. We found out the hard way.
Invisible Disability. So much have been said about it in connection to ADHD and Autism. But it is not just those two conditions. Invisible Disability in our case means an Invisible child. No one has ever looked at us funny walking down the street. No one has ever said anything in the playground, or restaurant, or in a family gathering. Because no one sees Yon. you look at him and he looks "normal". He is a gorgeous child with his blond hair and green eyes, he is smart, he is funny, he always has a "I just did something I wasn't supposed to" smile. You might think it is weird that he has a hat on in the cinema, but I'm guessing you won't dwell on it. You might look again because of his glasses, but he is four now, and more and more kids have glasses in this age. It drew more looks when he was younger. All in all, if you see him on the street, you won't stare.

And sometimes I wish you would. Because I am tired of being invisible.
Children with invisible disabilities get lost in the system. They don't get statements, they don't get one-on-one help, they don't get special attention. You end up finding yourself in meetings where you fight for your child's right to be disabled. You recite all the problems, and never talk about the good things, because you have to make people understand that there is a problem. You see, children with vision problems lie. They tell you they see when they don't, they find ways to hide what they can't see, they adapt. And it is wonderful. But it also makes it even harder to recognise that there is a problem.
So please, feel free to stare at my child. At me. Stare all you like. Because maybe if you stare you will actually see me. and I am so tired of feeling all alone.
Parents of children with Ocular Albinism don't have special support groups, we don't have charities, or a network of people going through the same thing to help us understand.
We never completely belong anywhere. Not in the Albinism groups, not in the special needs groups, not in the blindness groups, not in the autistic groups, not in this campaign.
We are left alone to deal with the doctor's terse parting words - "static condition that can't be treated".
If I am completely honest here, it isn't what other people think or say or do that is my main problem with Yon's disability. No, my problem is mainly me. It is my guilt, my fears, my feelings of utter helplessness, and my inability to live in peace with Yon's condition. I wish there was a campaign to help me be kinder to myself.

I wish there was someone to hug me every time I leave the doctors office, or hospital, or the school. I wish there were someone to tell me that it is not my fault. That I did everything I could. That I had him diagnosed on time. That I treated ok. That it is not my fault my genes are bad. I wish there were someone holding a crystal ball showing me that it will be ok in just a little time, that it gets better and not worse, that he will be independent. That one day, he will be able to go down the stairs alone and someday he will be able to see the number on the bus. I wish there was a way to know what to do. I wish that when I looked into the new teacher's eyes I wouldn't see that she doesn't understand a word we just said. But there isn't.

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Everybody lost it

It's Wednesday again, and Wednesday is "Positivity Day" because of Jane. I blame Jane. She is the one responsible for making me sit here right now searching for positivity. If It wasn't for Jane I could have stayed rooted firmly in my negativity. I like it here. But I also like Jane, and her Small Steps Amazing Achievement linky, which to me has a "one tiny light in the sea of dark" theme. And this week I've had both - tiny lights, and a sea of dark. 

"Why?" You ask? well, simply put, because we are four weeks into the summer holidays. Four weeks, which are twenty eight days, or 672 hours, or 40,320 minutes, you can see where I am going with it. It has been a very, and I mean very, long 4 weeks. 

I think we've all lost it. Completely. For God sake, last Tuesday we took the kids to see The Smurfs 2, and I cried. I cried at the end when the guy says about the stepdad "this is my father". Seriously, with real tears and everything. I know, I told you I've lost it. And it's not as if I even have a reason to, my kids don't have stepparents, and neither do we. I am not even pregnant and have the hormones excuse. No, it's just that I've completely and utterly lost it.

This whole house is full of people doing crazy things. 

Yon walks around the house talking to himself. No, wait, that's normal for him. But he reenact bits from movies we've seen. He IS the characters, he runs in slow-motion, he talks about himself "'take that glass.' Said Yon". We told him that he is "living in a movie" (it works in Hebrew. Promise), but he said it isn't true. It's a Wii game.
Also, he got into a habit of taking his bed with him everywhere, so he could sleep at every given moment. So he walks around the house with his blanket, pillow, and teddy. From room to room. In search of new sleeping grounds.
I told Yon today that he needs a haircut and he told me he doesn't, since he already had three haircuts in the past year.
That's why it didn't surprise me that Yon refused to progress with his studying. He thinks it's all a game you see, so he counts with his fingers even when he doesn't need to, he makes me write all his numbers "together", and gives the overall impression that he doesn't retain any knowledge in his brain. How could he? It's all filled to the brim with movie quotes. 

Ron, turned within a month from someone who only reads a chapter a day, and only football books, into a complete bookworm who read 5 books in under 3 weeks. Including the first Lord of the Rings and 2 Wimpy kid books. To be able to "read in peace" he turned his reading corner (that is located under his bunk-bed) into a fortress, complete with walls and a gate, and today Yon couldn't find him there.
On the other hand after really doing well and progressing with his summer-studies, this week he actually became worse with every Bond 11 test he completed.
Both kids are starting to resemble an iPad, though with Yon we still can't find the mute button. They walk around the house like iPad zombies mumbling "Need iPad. Now".
Yon got into the habit of watching nature videos on YouTube, the kind where the lion eats the zebra. His process is like this - find the video (he keeps them on favourite) on the iPad, press play, take down all the throw-pillows from the couch (aka the lions) to the carpet (aka the grass), and watch the video / fight with the pillows. That is of course, unless he leaves it there playing, and go to another room to play something else. And comes back running and screaming if you even think about shutting it down. We asked him to stop, because it upsets me (and Ron. Who eats meat, and knows where it comes from, but doesn't like those videos), but he just said he likes it. Particularly I think he likes saying to the screen "that's not very nice lion".
Ron, it seems, left home completely and moved into the world of Real Football 13 (it's an iPad game, to those with non-football kids).

This past weekend, after we were fed up with them jumping on our bed and trying to turn it into a trampoline, we took the kids to Ikea, officially to buy glasses. We've been in Ikea for four hours. FOUR HOURS. and most of it wasn't even in the checkout queue. Or the cafe. It was in the bed section, where Yon had to climb into each and every one of the beds "to sleep". Apparently my kids feel that Ikea is their own personal playground for pretend-play. I have to say the people at Ikea Tottenham were very nice, and no one told us off, even when Yon climbed on the fifth bed. Or when he tried every sofa, or dining room chair. We left Ikea after four hours with two very tired kids, and new glasses. It has been our first visit to Ikea in 3 years, and the first time we've ever spent less than 200 pounds in one. Told you we lost it. 

 

And how can we forget the whining and complaining, our constant companions these days? On Sunday for example, after Ikea on Saturday morning and watching football in the afternoon, Hidai played with the kids, at their request (that naturally came in the form of "you never play with us") I might add, air-hockey and pool and watched some more football, Ron still grumbled about Scrabble. 

 

And every night after we finish the whole night-ritual, they compose and sing to themselves a song about what happened today. There usually is a line about " and mummy shouted stop" somewhere there. 

Like I said, everyone here lost it. A sea of black.

But, 

Ron did read five books not about football, in less than three weeks, and enjoyed them so much he actually wants to go to the library today and get new ones.

He really did make good progress with not getting upset while working on the bond 11 tests (after the first attempt, in which he hit the bin, the door and the wall, screamed at me, and basically gave me a glimpse at what the future has in store for me), and was even willing to write things down and not do it all in his head. Though he did ask me to grade his "overall performance in these tests" (his words), and got slightly crossed when I wouldn't give him a numbered grade.

Yon went down the stairs of the tube station by himself. He still needed to hold the rail of course, but it was the first time he asked to do that. And he managed to, all by himself.

But the most amazing thing this past week belongs to Yon, who ,even though he loves his "lettering" (working on letters, for normal people), kept "forgetting" how to hold his pencil every five minutes, kept not liking to write the letters themselves, and kept thinking in letters and refusing to progress to the combined sounds that make a word. I am always a bit weary when I teach Yon anything, because he doesn't like being told things. He always says no, and this time was no different. We got into a fight, where he refused to acknowledge that he can read his name. Which I know he can. I left it alone because I really didn't know what else to do, and he got so upset about it, that it didn't really seem worth it. But of course I couldn't put away the guilt that stem from not teaching him as best as I could, the fear that he will never be able to write, and the feeling of being a failure because I didn't accomplish what I set out to do this summer - make sure he is ready for Reception.

We continued with the regular booklet work, and then one day I told him, that today I will teach him to write his name, thinking that he might believe me that it has more than one letter. To my surprise he held the pencil correctly and wrote it without any help. And than Ron's name, and daddy, and mummy. And iPad. 

And about 20 animals. Until I ran out of animals I can spell without checking. 

My baby can write.

 

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Music, When Needed

A couple of weeks ago, I opened a new Pinterest account. I am not really sure what Pinterest is all about, and how other people use it, but for me, it gives me a place to be as kitsch as I want, and Pin all the kitschy-sappy quotes I want and can find, without being ashamed of the fact that even though I am a die hard (and quite pessimistic) cynic, I actually like kitsch and “inspiring quotes”. That is why if you go to my Pinterest you will see mostly quotes & kitsch. I give myself 20 minutes a day, right after dinner, for finding more of them, and I have to say I really am enjoying it. Last week when I was in one of those twenty minutes, I found a quote about music being the answer to everything.

I don’t remember if I pinned it or not, because, well, it isn’t. But it still stuck with me. A few days after that, on Saturday, I got an invitation from Kelly, who writes the lovely blog Tiasmums 12 to join a meme about “my ultimate summer driving playlist”. I have to admit I have no idea what a “meme” is. A quick glance at Google was no help, but as far as I could understand it it’s a chain thing, where I am supposed to write about my chosen summer music, and then tag a few other unsuspecting people to do the same.

Why would someone choose me for something like that, I have no idea. Obviously Kelly did not read my Changes, Kellogg's & iPads post and was unaware that I am incapable of taking a simple question and giving a straight answer. I love complicating things unnecessarily. Just because I can. 
Also, she was unaware that I don't own a car. Or go anywhere.
I didn't want to be a grouchy person, so I thought about actually participating in this meme, but the more I thought about it, the more I found that I have a difficulty with it, with writing about the music that I love. It felt like an intrusion of privacy to me. Funny, because I can and do share so many things others will feel are much more private than music. But my music, the music I wanted to write about, is so much more than music. Some days it's the only thing that kept me sane. That kept me going. And putting it out there to be scrutinised and laughed at, was a tough request. 

But in the end of the day I decided to kind of participate in this meme, because the thing is, music is important to me. To all of us. We have music in the background most of the day, we try and educate the kids that there was music before One Direction, and mainly because I often feel like life should (and do) have a soundtrack. I guess that's why we try to find a theme song for different periods of life. At the moment it's Bob Marly's Three Little Birds, because it's the kids choice, and because we need to go with the "every little thing is gonna be alright".

Having said that, I have to admit that I am very bad at recognising songs or artists, remembering lyrics and music, and being able to listen to a whole album from start to finish. My playlist is an amazingly disorderly mess of almost every genre of music and era out there, played on constant shuffle. It used to drive Hidai crazy. He likes a certain type of music (he calls it "alternative Rock". I call it "people shouting at you"), and to listen to his albums one at a time. It took him a long time to concede and accept that when we are all together, my playlist will be the one playing. I sometimes think this is the reason he likes working on the computer at night. Out of all the activities men can do alone at night, Hidai writes emails & documents and listen to his music. Even Ron has a playlist of his own since he was 6 years old. 

A couple of years ago we were going through some rough times financially, and we didn't see the light at the end of the tunnel, and as part of trying to believe it will be ok I created the playlist "Orli When Needed". At first it was rarely used, but somehow, slowly, it became our evening soundtrack. Every evening when we sit down to eat, will come the question - "which playlist to put on?" and the answer "Orli When Needed, because it's needed". It has become such a regular question at the start of the meal, that yesterday we were sitting to eat lunch and Yon looked at me and asked - mummy is it needed? It wasn't. The playlist has grown somewhat in the past year, mainly because Hidai said he is tired of listening to the same songs all the time, but for this exercise I've decided to give you the ten songs I listen to, when it's needed. And it usually is.

1. Temporary Home - Carrie Underwood. Makes me cry every single time. Every. Single. Time. Because this song, to me, is the symbol of all the ways I am failing my kids. Of being totally and utterly lost. Of searching. But it is also a symbol of going forward. In the time before we left Gibraltar I listened to it a lot, feeling like I am tearing my children from everything they know, and taking them to an unknown future. Feeling that they will never have a home that isn't temporary.

2. September - Daughtry. Because September is never an easy time for me with the house becoming empty, Jewish New Year (which we usually celebrate alone) and Autumn. But this song also belongs to the "before we left Gibraltar" period. It was a very tough time for our family, and not an easy choice to make. I really needed the "it was worth it in the end" line there to be true. 

3. What doesn't kill you (Stronger) Kelly Clarkson. Because it's how we live. What we teach the kids. And the single most important lesson in life. I do apologise to my neighbours for usually in every bad day I have, this song will be heard in a few blocks radius.

4. Just Breathe Pearl Jam. Because It's the only song from Hidai's favourite band I can listen to (and I actually love). And for the same reason it's the name of my blog. It really is what I tell myself every single day, and it's my constant wish, to some day be able to Just Breathe. 

5. Weightless - All Time Low. The one song that made us fly to London and watch an entire show together, for the first time in almost 10 years. Just to hear them preform this song. The clip doesn't do it justice. It was the theme song of our life for a while. In some days, it's still is. 

6. Many shades of Black - the Raconteurs. Because we learned that there really are many shades of black. And we've been through quite a few of them over the years. Because we try to take it as it comes and be thankful when it's done. 

7. Sweet Silver Lining - Kate Voegele. because I think every word in this song was written for me. To me. About me. If I had to choose one phrase to describe myself it will be from this song (unless I would choose Tolkien's "Not all those who wonder are lost") - 

"so many people are looking to me
To be strong and to fight but I'm just surviving
I may be weak but I'm never defeated
And I'll keep believing in clouds with that sweet silver lining"

8. Home - Daughtry. Because we don't have one. A home. A place where we belong. But because we also don't regret the life we chose for ourselves. It was another one of the songs we listened to on those dark days in Gibraltar, when we realized that we are destained to keep moving, that realising your dreams and living the reality of them is two different things, that the prices for our choices are high, and that we are each other's home.   

9. When You Say Nothing At All - Ronan Keating. Because it was true ten years ago when we chose this song to be the song that will be played when we walked down the (Jewish) aisle, and it is even more true today. 

10. Have I Told You Lately - Van Morrison. The first song we danced to at our wedding. Kitsch. Told you I am a secretly kitschy person. But how can you not absolutely love this song? For me, this song is the personification of love. It sums up so beautifully what I need to tell Hidai and my kids every single day. Ten years, and still every time I hear this song I get the urge to dance with Hidai.

There you have it. My ten songs for When It Is Needed. In my life today, they are needed a lot. Sometimes more than I would have liked. Writing this post took me back to that time when our future was so fragile, so bleak, so frightening, that I sometimes felt we will not pull through. That we will never be ok again. We did. We are. For me, music isn't the answer for everything, but it is the soundtrack to it and so much more. There were days music was all we had, in good times and bad times, music is a constant companion to our lives. It makes them better, easier, more bearable. It gives us a place to shout, to scream, to feel. Music is magic. it reminds us, day after day, that there is good and light and love. Even when it doesn't seems so.  
My life is still tough, sometimes unbearably so. Sometimes it seems it will never end. Trial after trial. Fall after fall. Hurdle after hurdle. But looking back reminded me that it really did not kill us, and it really did make us stronger, closer, more determined.

*No more kitsch. Next post, is business as usual.
** All these songs are my favourite because of their lyrics. But if you have a few minutes, and especially if you have a Special Child, you should check out Sara Barreiles's Brave. For the video clip.
*** I am not really sure how or if to tag anyone else, so I am leaving this one open to whom ever wants to create a Summer Playlist of his/her own.

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