Rare Disease Day

Last Saturday was Rare Disease Day 2015, which I guess most people don't know about unless, like me, they have a child that fits the category and a Facebook feed full of people whose children fit the category. Sometimes I miss the days before we knew about Rare Disease Day, World Sight Day, Autism Awareness Month, Jeans for Genes Day, and so many other days... It used to be that Ron came back from school with a note saying we are having a red/blue/green t-shirt day for this or that cause. Please donate a pound. And all we cared about was how are we supposed to find a green t-shirt in the next 24 hours. Ron is a redhead - he doesn't look good in green.
Nowadays, I get emails and messages and requests to write about each and every one of these days, nowadays I don't understand why they didn't collect money in our school here for Rare Disease Day (or any day for that matter), nowadays I don't know how it is possible to not know about these days and their meaning for other people.
Nowadays I measure everyone and everything with relation to how they treat people, and mainly children with special needs.

And yet, today is Thursday and I am just now managing to finish writing about Rare Disease Day, because I can't seem to be ok with Albinism being part of Rare Disease Day. I have a really hard time with calling albinism a disease, because if albinism is a disease, that means Yon is sick. And Yon is not sick. On the other hand, every time I tell someone new about Yon's ocular albinism they take two steps backwards, like somehow it's or he or me are contagious. Like the fact that Yon's brain doesn't produce melanin can magically transport itself to the other person's brain and he will suddenly start growing blonde-white hair.

It took me all day (ok, I also got into a fight with my computer and couldn't fit the photo in the frame, which I knew I know how to do, and which eventually took me over an hour to fix) but I did join in the campaign, because at the end of the day I can't sit on the sidelines and not join something I support with all my heart just because I have a hard time with the labelling.
And I do, I have a hard time with labelling albinism as a disease, a condition or a disability. It doesn't make it any less true. I have a hard time getting the image of a sick child, or the meaning of a "diseased" child out of my head. But this is the point of Rare Disease Day - to make us understand that what we think of as a disease is not the only correct image.

For me Rare Disease Day is about two things -
It is about reminding us of the fact that medicine, like everything else, is a business. The Rare Diseases out there, or the "Orphan diseases" are the ones that gets dumped to the end of the line - there aren't enough patients to merit spending time and money and resources looking for a cure. But those "not enough patients" are people - dads, mums, children. It is so easy to look at numbers and statistics and say hey it's just 1:200,000 people... It is a very cold comfort for the people who has the condition, to their families, to the people who have to say once and again - no, there will be no cure for that, no one is even looking. Trust me, I say it often enough.

And most importantly - and the reason why I write about Yon so much in this blog, the reason why we tell people about albinism, the reason why I join in every campaign is that people are afraid and hateful and uncaring for what they don't know. Just today I read in Blind Children UK that new research shows that almost half the parents they asked would not invite a child with sight impairment or blindness to a party or a play-date. How many of these people ever saw a child with sight impairment? How many people do you know who has albinism? We have doctors treating Yon who never saw a person with albinism. All everyone knows is the mental image we have from the movies, from the books (like The De Vinci Code or The Heat), where to call what they depict incorrect will be an insult to the word. We are afraid of what we don't know, and the mental image we create of that thing. For the same reason watching the movie after reading the book is always a let-down (and not just because usually the plot in the movie sucks) - the onscreen image is always different than the one we created in our mind. The same is true for the real-life image. This is why we need days like Rare Disease Day, this is why we need inclusion, this is why we need to know.

I have a lot of people on my Facebook and in life who will not "like" or like this post or any post I write about Yon, who don't care, or don't understand or think I am putting him "out there" too much and flaunting his differences instead of being quietly relieved that he "doesn't look different", that I can hide his albinism, or the Asperger. It is easier to "like" a cute cat video, it is easier to share a photo of a cake, than it is to understand how hard it is for kids like Yon to fit in, and how the fact that he does is a miracle. How we can talk for hours about the fact that he decided to learn how to go down the stairs. How amazing it is every time he recognises us from afar, and how when I changed my coat the other day and he didn't recognise me it broke my heart.

It is so much easier to send our kids to a school where everyone "is like us", where they (and mostly we) won't have to encounter anything that makes us feel uncomfortable, anything that will force us to explain to our children about differences and specialness and other ways of life.
It would be so much easier for me to hide Yon's differences, to have him labeled a lot of other things, but not disabled, or blind, or Autistic. But I won't.
Because our children, my child, are not diseased. They shouldn't be hidden and banished to a dark corner or swept under the rug. They shouldn't be a dirty little secret to be hidden from the world. They should be celebrated and congratulated and embraced.
Because it is our children - the sick, the different, the Special - who makes society into humanity.

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Talking out loud about special needs

It wasn't the post I meant to write today but it's the one I'm going to anyway, because late last night my best friend (sounds so high school doesn't it?) texted me to tell me her son's tests did not go as well as could be expected and they are now starting down the assessments, diagnosis, and finally disability and Special Needs road. My heart goes out to her, and I wish I could have just hugged her, but she is in a far away country, and there is nothing I can do to help. I know there is nothing I can do for her, because I still remember how there was nothing anyone could do for me when Yon first got diagnosed. When we started down that road nobody wants to ever walk on. She was on my mind all night. There are so many things I want to tell her about where she is headed, about this road of ours, but I can't. Because some things are not really for talking. Some things sound better in writing, and some things I can't say without crying. And besides I know she'll read this post.
When I woke up this morning I had every intention of writing her this post, but first I had to go to school for a parents meeting in reception. They are trying to get more parents involved in the school, and reception is a good place to start - the kids will be in this school for 6 more years, and as it happens for most of the parents it's their eldest or only child so there were quite a few parents who came to the meeting and really wanted to get involved. As the discussion went on one of the mothers, whose child is on the spectrum said something about in a few years time teaching the children about disabilities and sensitivity and inclusion in general. To help shape their understanding and to help prevent bullying. Then another mother, whose child does not have any disabilities, suggested that what needs to be done right now is to make the Special (or as she put it - different) children stand up in front of the class (or the school. She is a fair person. She gave us choices) and explain to everyone "what's wrong with them".
And all of a sudden my world shrunk to this tiny spot. I couldn't think, I couldn't remember my words, or my English, I was so angry I actually shook. And all of a sudden I was reminded how much Yon, and children like him, will have to overcome.
And as it's always comes in threes, I came home and found a different mum who wrote in one of the many Facebook groups I am a member of about how parents of children with ADHD are disappointed that their children didn't turn out as they (the parents) wanted and should still remember to love and support them in spite of it. She, also, does not have a child with disability.
Yon doesn't have ADHD, nor is he on the spectrum. Nobody ever heard of Ocular Albinism, and if I had kept my mouth shut not one of those parents would have known he has any disability. And I'm ashamed to say I considered it. For one tiny second I considered keeping my mouth shut.
Of course our school will do no such thing, and of course I spoke my mind (As much as my limited English at the time allowed me). That is not the point.
The point is, you forget. When you walk down our road you don't have time to look at other roads. When you walk down this road it consumes you. All you see is the people who walk alongside you. It doesn't matter what disability or condition or whatever their child has, they are still your travelling buddies. The people who walk alongside you talk the same language, deal with the same things, understand you in a way no one else can. Ocular albinism is unique, and so I find myself walking along people whose children have other disabilities than Yon. No one shares our exact road, and yet they do, they understand when I tell them I complained about being told to wait for an hour in a small crowded place filled with people he doesn't know and noise. They don't look at me the same way Ron's teacher looked at me when I told her she can't expect us to do that with Yon just because she wouldn't give us first slot in the parents-teacher meeting like we get every single time. Up until now. Because she thinks we are exaggerating.

And you forget. You forget that there is a world outside your road. You forget that other people who walk on other roads look at you and your child and your traveling companions and see something else.
You forget it until you come to a crossroad and collide with them.
I have no idea how to make people understand what ocular albinism is, what disability is. I write my blog, I talk to people, I am a silent member in so many groups where I advise on all things eye-related, I listen and help (hopefully) everyone who approaches me. And in my head I was making a difference. I was helping. Only I wasn't. Not even in the 60 parents in our reception classes.
Some of it is my fault. Even today, after a year down this road, I find it hard saying out loud that Yon is disabled. I fumble over the word, I've tried avoiding it as much as possible, I find it hard explaining it to new people. I hate talking about all the things that are wrong with him and seeing that look in people's eyes. You know that look, and that tiny step backwards, like it's contagious. I find it hard to explain how his vision (or lack thereof) affects his behaviour, and what Blindism is (it's the ways in which blindness causes similar behaviours to autism but they stem from different reasons).
No, none of these things says that I am disappointed in Yon. But yes, my secret shame is that I find it hard to talk about his ocular albinism calmly, in English, on the fly.
Maybe that is why I couldn't tell my friend everything I wanted to say. Maybe that is why I hope I said more today. What I wanted to say to my friend last night is that it will be ok. That it's a tough road, and it's filled with tests, and doctors, and people looking at you funny, and that it's ok. It's ok to feel guilty, it's ok to feel angry, it's ok to cry more than you thought you could ever cry, and worry more than you ever thought possible. It's ok to hate the world, and yourself, and your genes. It's ok to be afraid. And it's ok to be sad. Because on this road you also discover more love than you thought possible, and happiness in places you didn't think were possible, and courage and strengths. Yours and his. You discover the people who walk alongside you, and understanding.
Ours is not an easy road, that's for sure.
What I should have said today is that we don't teach our kids that they are different, we teach them that everyone is different. And that I guess there are some things that you only understand after you've walked a mile on our road.
Life will be harder for Yon. And he will meet so many more people whose bigotry and lack of knowledge will be spoken without a second thought. I can't shield him from that, and I know it. As he grows up he will need more help and it will be more noticeable. But he will also have the strength and ability to deal with these people. He will also have love and friendship and acceptance.
Because that is what you learn walking on our road, that bigotry and meanness shouldn't, couldn't, wouldn't win.

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On being left behind

We are going through some things this past few weeks. It is one of those times when you have things bothering you that you can't really blog about, for various reasons, mainly because after all is said and done, a blog is a public space and not everything is for sharing, and not everything is for sharing at this particular moment. But these things happening caused me to be stressed, and as a result I wanted to write. In fact I have about 5 posts that I want to write, and I had every intention of writing each and every one of them, but every time I sat down in front of my computer this last week or so, I wrote two sentences and then froze. I didn't know what to write, or how. It was a completely new experience for me. I felt like the biggest cliche out there, saying "but something like that has never happened to me". After all it wasn't any of the multiple things that I usually go through before I start writing. It wasn't a case of writer's-block, it wasn't a case of "oh no I need a post for tomorrow and I haven't a clue", and it wasn't any of the things that happens after I finish writing, because it wasn't a case of "no one will find this interesting enough to read". I know all those fears quite intimately. They go through my mind at least three times a day. More if I actually try to write. In fact, after I release a post into the world the first thing I do is shut down the computer (and every other internet related electronic device near me) and try not to think about all the people not reading my posts. If I could, I would let Hidai (or any other unsuspecting volunteer) release my posts for me. I am not good at letting go.
I also tend to hyperventilate, nag about all the things that can go wrong, and walk around restlessly through the whole process.

Working (or playing Candy Crush)

And if it's tough with posts, you can imagine how much I like letting my kids go anywhere without me. The only good thing about my neurosis is that they are predictable. I am like a well oiled clock that way. A cuckoo clock maybe, but still a clock. For years I never took the kids anywhere, except home. Needs to go to nursery or school? Daddy will take you. Needs to go to an after school activity? Daddy. Needs to go to a friend's house? Yes, I know you know. Daddy. The problem is I can't leave. I don't mind sitting outside and waiting. I don't mind being the creepy parent who hides in the bushes (I am guessing you have seen New Year's Eve, and know who Piper's mum is. If not, you probably found that less funny). I just can't turn my back and go out, leaving them there to fend for themselves in the cold-cruel-crazy world. I can't be sure they won't be lost or hurt, or insulted. I can't be sure there will be someone to look over them, to notice them. I can't be sure they'll be fine until I come back.
In a different lifetime I used to translate articles for university students. I translated a few hundreds of articles, but I only remember one of them. And this one was about parenting. I remember it because it was about how a mother's job is to be left behind. As mothers, as parents, every day we lose a tiny bit of our kids - they start walking, dressing themselves, feeding themselves, reading, writing, they learn how to operate a TV, and they leave us. Just a little bit more. It is our biggest job, and our toughest one. Because being left behind is the worst feeling there is. You are not needed here anymore.
But there you have it - If we do our job right, than our kids will be able to leave us more easily.
Some of it is metaphors (or at least things you can ignore their symbolism), and some of it is real live leaving. Like taking the kids somewhere and leaving them there. Or maybe they leaving you and going inside without a backward glance.

And I am not good with letting go. In fact with Ron I was really bad. I remember the first time I put him in nursery. I cried the whole time. And bought a new printer. But the years, some Rescue Remedy, Hidai holding my hand and a lot of practice made me feel like I am getting better. Or maybe it's the understanding that I have no choice. He will hate me forever if I try to follow him everywhere. And you get through not going with him to the first school trip, or the second one, or the beach-day. You get through 10 first days ok, you get through picking him up after a half-term football camp (just days one. Not one with nights). And it lulls you into believing that you are stronger, that you can do it.
Than comes the first day in year 4 and you manage to go through it all without crying, with only a mild panic attack, and without running to your child crying loudly "Oh sweetie pie, my baby, I've missed you so much!" the minute you see him come down the school steps.

Follow the purple line and you'll get to reception

And then you have Yon, a typical second child, and somehow I had the fantasy, or thought, or dream, that it is easier the second time around. Especially this year, as we've taken him to visit his new Reception class a few times before his first day, we've talked about it non-stop and mainly because he really wanted to go. He wanted to be in "big school" like Ron.
And maybe it was because I was very preoccupied with other stuff. But his first day arrived, and for the first time in our lives as parents Hidai didn't take a day off to be with me. Because we forgot. Because we didn't think it would be hard. Because Yon is a second child, and it is supposed to be easier. After all we already know that nothing bad is going to happen, that it is just three hours for the first week, that he knows the teachers and the classroom.
I can give you all these excuses. God knows I gave them to myself. But then we got there on Monday for the first day, to the new classroom, and it was full with kids and parents, and noise. We stood there, Hidai & I in the entrance to the classroom, Yon had already gone to play with some animals and waved us goodbye, and we looked at each other and in that moment we knew. We can't leave. We can't turn our back and leave our baby in there alone.

FIrst day, first ten minutes in reception

That is the moment when we lost one of life's better fantasies and learnt one of it's harder lessons - it doesn't get easier.
We did leave of course, but not before we talked to the teacher, the 3 SEN assistants, both the school and the Children Centre head teachers, and the deputy head; and we still spent a couple of minutes standing outside and picking in through the door-window. We left, just like we left Ron in year 4, just like we left both of them on Tuesday and on Wednesday. We left because he had a lovely time in Reception, because he was talking to another child, because he did everything we were worried he wouldn't - having fun, communicating, sharing, seeing.  We left, because there was nothing more to do, and we didn't have any more excuses not to.
As I am sitting here writing this I am thinking about my boys growing up, about having to let them walk to school alone, about letting them spend nights out of the house, I am thinking about one of the bloggers I love reading, whose daughters are about to leave for uni, about my parents having three kids in three countries (and soon continents) and having to say goodbye every time, and I am not sure I can do it. I am not sure I am strong enough to let them go. To be left behind.

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tiredness and inspirations

It's been a heck of a few weeks here at Orli-land. Not all of the reasons why are blogable, and not all of them are related to the fact that my parents are here (who, just because some people weren't clear about it - pre-approved the post I wrote about them. In fact, not only did they found it funny, but they informed me that I left out some of their more "colourful" behaviour. Yes, making fun of each other helps us survive the visits), and the truth is I am tired. Just tired. Sometimes it seems like there will never be an end to all the setbacks and I am tired of bashing my head against a brick wall trying to see who will break first. I am starting to feel like I am cracking. I know, I know - think positive and all that, but I think the only people who can think positive are the people who get enough sleep and chocolate, and that isn't me at the moment. Now, I know why I don't get enough sleep, but for the life of me I can't figure out why I don't get enough chocolate to be honest. Maybe because I'm afraid if I start I won't be able to stop eating it. As I am typing this I am envisioning myself eating one of those Lindt Lindor Sharing bags and not sharing. Last week Ocado sent me an email informing me that we have a one year anniversary (Ocado & I, not Hidai & I) and they are giving me a chocolate discount. How can you say no to that, right? So I bought this amazing Lindt box (yes I love Lindt. No, unfortunately they don't pay me to say that. But if any of them is reading this, I am willing to take my payment in the form of chocolate money), it was finished within 10 minutes. True, I wasn't the only one eating it, but you get my drift - chocolate. And lots of it.

Before 

After 10 minutes

I digress of course, because that is what I do - never one to follow a straight line, not even one that is inside my head.
I was talking about tiredness, because this is where I am at this moment, and most other moments if I'm honest. This morning I actually woke up even more tired than I was when I went to bed last night. It seems like the turbulence that is living inside my mind is becoming worse, or maybe it's just because I wrote the post about all my OCD tendencies and I am more aware of exactly how many I have nowadays, but life just seems too... Messy. On top of everything else, the todo list just gets longer and longer no matter how many items I cross off it, I don't even want to think what I will find when I check my laundry baskets tomorrow morning, I am behind on reading, commenting, writing, and all other blog related tasks, this is in fact the post that was supposed to be written on Tuesday for Wednesday, and before I started working on it, I found myself writing apologetic tweets, comments and mails because I missed mails, I haven't read posts, I haven't answered comments. I don't remember the last time I took a day to myself, the last time I read a book, the last time I sat down and just felt in peace.
Actually, I do know when that was, about nine years ago.

a very tired me

Nowadays I look around and all I see is things that need to be dealt with, responsibilities, and balls in the air. So many balls, and hand-eye coordination was never my strongest suit.
And it seems that the main two, also known as my kids, are threatening to be the first to fall.
Yon is sick and tired of being home. He is ready for school with a capital everything, and is super excited about wearing the uniform, going to "big school", having friends and routines, and more than anything, he doesn't want to be home alone with me anymore and is missing his Ron. I don't understand why the school has to do home-visits, and why those home-visits have to be in September and delay the start of the school year. But he starts Monday (at last), and this week we took him to see his new class so he will know the way, the playground, the toilets, etc. He almost cried when we told him it's time to go home. So most of the time these days he is cranky, hooked on electronic devices, and bored out of his mind. On top of his carrying his bed wherever he goes, he has now moved to a daily screening of The Lion King, including a daily crying session whenever Mufasa dies (please don't think I am heartless, but this is the same child who watches real animals kill each other on YouTube for fun), and a reenactment of the whole movie with his own animals.

Ron started school and had a complete and utter melt-down. It is not about the school, in the sense that there is something wrong, it is about the whole getting back to routine after a long holiday, the pre-teen existence, and the effort he puts into his school-life. Ron is one of those kids who has to be perfect at everything. I know it is trendy to say "perfectionist", everyone is these days, especially when it comes to job interviews (well, not everyone can be like me and say their worst quality is their dislike of authority figures and hearing criticism), but Ron is the real deal. Everything he does has to be perfect, he has to be perfect at all times, everything is a test and has a correct answer, and on the off chance he gives a wrong answer to anything and for any reason, he will beat himself up for hours, or days, or months. So he gives 150% of himself in school. He has to get every question right, volunteer for everything, play with everyone, etc. He HAS to be perfect.
And he is. But then he comes back home, and he can't hold it anymore. The first week of school, when they weren't really studying yet, he did all that and without having his routine to fallback on, was simply too much for him, and he spent his time at home arguing with everyone, fighting with Yon, talking back, and being generally grumpy.
So Monday I let my parents go pick him up from school, even though it is usually the only time you can get him to talk normally about what happened in school. Once we've reached the perimeters of the house he becomes this snarly tween who barks something about an iPad seconds before he closes himself in his personal-space corner under the bed (it's a bunk bed. He doesn't sit under a regular bed). And then it happened, that one tiny moment that reminds me that it is not all that bad, that I don't have to hide under my bed with my hands over my head. Ron got elected to represent his class, together with one other girl, in the school council. He got more votes than every other boy in class, with more than half the kids voting for him. He gave a speech why he should be elected, in which he said he is friendly sensible and confident, which he is. I know it might not seem like such an amazing achievement, but for him it was. He was so proud, he was very afraid they won't want him. And for me it was, because whenever something like this happens I first of all am thankful he has Hidai's popularity genes and not my unfriendly ones, and second of all think about a child who has moved 3 countries, who only got to this country last year, and who has more ambition and determination than many adults I know. I think of my little man, who goes for what he wants in life, without ever hesitating or giving up, and I am in awe of him every time. I didn't know he wanted to be on the school council before he went for it, but thinking back I really don't know why I didn't think he would want to. He didn't tell us he will try to get elected. He just went for what he wanted, and got it.
He is, every single time, my inspiration.

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Gifted. Not always a gift.

There is a kind of shame when you try to write about a gifted child. The first thing people think when they hear you talk about your child being gifted is, he is not really gifted. You are just One Of Those Parents. No one says anything of course, they all just nod their heads, look at us funny and talk to us in a certain tone of voice. Probably feeling sorry for Ron, that he has parents who are not satisfied with what God gave them. The second thing people think, usually after they talk to Ron, is, really but he looks so normal. You know, not like any of those scary weirdos you imagine when you think maths-genius. The third thing they do is stare at him. Like he suddenly grew a second head. Like they see him for the first time. Like he is some kind of freak. Not all people go through all three stages of course. Some of them never leave stage one. In these situation Ron gets pity, and we get to have the added bonus of people looking down their noses at us. I found that having a gifted child is no different than having any other Special Needs child. But even while writing this here in my tiny corner of the web I can't stop feeling like I need to erase it, like I need to justify it, like I am over-dramatising it. I know what some of you are thinking now, especially if it's the first time you are reading my blog - What do I know about Special Needs? Who gives me the right to compare the two? Every parent to a "real" Special Needs child would tread places with me in a nano-second. Rich people's problems. I am not one to justify myself usually. On the contrary, I love to leave things ambiguous, to go with the "never explain, never apologise" thing. But not here. Years of shame demand that I explain that yes, I do know, I do know disabilities, I do know everything that comes along with a Special Needs child. And still, if I am completely honest with you, we hide Ron's giftedness even more than we hide Yon's Ocular Albinism.

People might not understand Yon's condition, but at least they don't think we are imagining it. You see, we didn't have Ron tested. Ah, I can see the look you are giving the screen now, that look from stage one, the one that says it all - One Of Those Parents. Trust me we thought about it, repeatedly, mainly to have a piece of paper that we could wave at everyone we meet and say - you see? Told you so! But we didn't. In Israel, land of tests and diagnosis, he would have gotten tested at school (weather we wanted it or not) when he turned 8, and if we wanted to, we could have gotten him tested much earlier. But here it's different, it is up to us to decide if we want to. And we do. And we don't. Because when you parent a gifted child you are trying to find the same answers to the same questions as with any Special child - how do I give my child all the help he needs, and at the same time make his childhood as normal as possible? The fact that the needs are different when dealing with a gifted child does not mean that they don't exist, or are less difficult to satisfy. How much do you push? How much do you advance his learning? Is it okay for a year 3 pupil do a year 6 workbook? a year 8? How do you make sure he still likes going to school? Is the fact that he can achieve something intellectually, means he should achieve it? Which kind of pressure will an IQ test put on him? What if he discovers he is "only" top 5% and not top 2% or 1%? How do we give him everything while escaping the labels? How do we preserve a "normal" childhood for him, and still let him study the things he wants to? How do we teach him to work hard to achieve, when it all comes so easy to him? How do we teach him how work correctly, when he doesn't need those stages? How do we teach him IQ isn't everything? That it's not the most important thing?

We chose football (he chose football. We chose to make it into a life lesson), reading (as there is no such thing as too much reading) and he is now finished the first book of the Lord Of The Rings (made my geeky heart swell with pride), and the Bond 11 verbal & nonverbal booklets, because they will teach him to think in different ways than he is taught in school, and we'll get advancement and challenge but without teaching him secondary school material. It has not been easy, and today, after I thought we've made excellent progress, I heard the sentence I never thought I'd hear from him "I am not good enough". Ah, the parental guilt reared its ugly head. Those nagging questions that are there all the time started screaming at me. Did I push too much? Did I try to reach past his limit? Why do I do that? Why can't I leave him alone and let him cruise through school? It's because I secretly am One Of Those Parents. You know, the ones that stand behind their children when they are photographed to the newspapers with the headline "smarter than Einstein". I push because I want to showoff my child. And now I pushed too hard and I broke his spirit. His love of learning. He will hate me forever.
What do I do now? How do you recover from a sentence like that? How do you make someone understand that the fact that they are better than good enough doesn't mean they don't have to work hard? Should we let him quit or not?
Not. of course not. Because if we let him quit, what will we be teaching him? How will that help his self-esteem? How is it even possible that he has low self-esteem? We talked and we talked and we talked, we explained all the things we explained a thousand times before. But it's still a very fine line we walk with him, trying to teach him that while he has to try, he doesn't have to get a 100% right, and it's okay to fail, but that you should never let failure be the endnote, you never give up. Yeah, I know it's a tough lesson, full of conflicting messages and hard life choices.
Being gifted is not always a gift. I look at Ron and I see he has a very hard burden to carry, one that doesn't let him rest even for a second, one that no matter how hard we try will never let him have a normal childhood, one that defines who he is. One that he loves and hates at the same time.

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An Invisible child, a Special child

It took me awhile to even start writing this post, because when it comes to Yon, things are always so much more complicated. Being a parent to a child like Yon brings with it so many difficulties that you can't imagine beforehand. It starts with the most banal question of all, what to call his condition? Is he a disabled child? a special-needs child? a Special child?
The outreach advisor that met us on Thursday called him an Invisible child.
Invisible.
She meant to say that because his disability isn't showing in anyway apart form wearing glasses and a hat, that people forget about it and his special needs aren't met.
And just like that, she made my beautiful child into disabled, with special needs and invisible.
We call him Special.

Being the parent of a Special child you have to be constantly prepared for the little twinges in your heart that comes unexpectedly and randomly when you are walking on the street and see something interesting and he doesn't see it, or when there is a discussion about travelling with kids and you suddenly realise you can't give any tips about playing games that involves looking outside, or when you have to give him the iPad because somebody made the letters too small for him when using that app on the iPhone.
Being the parent of a Special child you have to be constantly prepared for the big twinges in your heart that comes quite expectedly when you are facing reality, like the fact that Yon is moving from Nursery to Reception in three months time. That's why we had the conversation with the outreach advisor who is helping us educate the school about Yon's... What should I put here? Problem? Condition? Disability? I can't use any of them. About Yon. None of the teachers in our school has ever educated a child with Ocular Albinism, and they, like most, were unaware of its existence until now. Let's face it, most people haven't seen a person with full Albinism in real life, let alone someone with Ocular Albinism (strange as it sounds to me now, before Yon was diagnosed we were part of that large faceless mass). In our borough, at the moment, there are only 6 children with full/Ocular Albinism.
Yon is one of them.
Being a parent of a Special child, you learn to behave differently, to look at everything differently. You learn to say everything aloud and not count on a look to be sufficient, because you can never be sure he sees the look, or knows what it means; you learn to not "disappear", as in, walk a little further beside him; you learn to leave the house a few minutes earlier so that the going down the stairs will get the time it needs; you don't move anything in the house; you look at road signs and think "why the hell are they up there?" because Yon can't see them; you activate all the accessibility features on each device you own.

Being a parent of a Special child you learn to be weary of change. Children with vision problems don't like change, they don't like new places, new routines, new food, new people. We need to move Yon to Reception. It is located one door to the right. For all he cares it's a million miles away. Reception means a new room, with new teachers, new children, new routines, a new place to put his bag, a new playground, new hours. It will be his first time eating lunch at school, it will mean sitting in class, it will mean learning letters, phonics, maths.
It means we sat down with our advisor and the school SENCO (look at me using the lingo - Special Educational Needs Coordinator) to discuss the fact that if there are stairs it's a problem, if there are posters in class that are hang high it's a problem, that if the size of the letters is smaller than 14 or 16 it's a problem, that if there are PE lessons with balls and climbing its a problem, that if there is a lot of noise in the lunch hall it's a problem, that if there is a lot of light in the classroom it's a problem...
It doesn't end here, what about reading from the white-board? What about finding his friends in the playground? What about tests / assessments / etc.?
And then there are the real worries, could he be able to read? Could he be able to write? Will he need a tutor? an iPad to connect to the smart-board?
That is the moment we moved into the realm of Mainstreaming.

Being a parent of a Special child you find yourself constantly checking, examining and following. You never just gaze fondly at your child.
Being a parent of a Special child you get used to what no one should ever get used to - the endless stream of doctors, specialists, tests, advisors, psychologists; the endless stream of questions, of examinations, of people looking at your child and trying to assign the wrong explanations to things that are so tough to understand; the endless need to explain, educate and enlighten people just to go through it all again the next day.
Being a parent of a Special child you learn how little doctors really know about the inner working of the body, how much you have to learn by yourself in order to do the best for your child, how precious it is to find good people along the way.
Being a parent of a Special child you learn to take it one day at a time.
Last thursday we had a Yon day. Yon days are always rough. Yon days usually start the day before, with the realisation that I can no longer pretend it's "someday" and have to deal with it being "this day". Yon days are anti-diet days, days that stretch me to the limits, days that leave me empty inside. Yon days don't always take a day. This one took almost a week.
Yon days are here all too often.

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