June 26, 2013

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.
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.
Orli, Just Breathe - An Invisible child, a Special child. Ocular Albinism
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.
Orli, Just Breathe - An Invisible child, a Special child. Ocular Albinism
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.
Orli, Just Breathe - An Invisible child, a Special child. Ocular Albinism
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.
Orli, Just Breathe - An Invisible child, a Special child. Ocular Albinism


  1. Just popped over to take a look at your blog and found this post. It really pulled at my heart strings and I can totally relate to the words. We are also trying to take it one day at a time x

    1. Hi Jane, thank you for your comment. Taking it one day at a time id, unfortunately, easier some days more than others...

  2. Wow. You have articulated so many of my feelings as I am also the mother of a child whose 'disabilities' aren't so apparent at first glance. My sweet Jada is 4 and has Cerebral Palsy due to a stroke after birth. She is not speaking yet (and has low muscle tone & delays) and when she doesn't respond to well-meaning strangers who greet her, I am left having to decide whether to bring up the fact that Jada had a stroke, or let them think my daughter is being rude... I am so glad I stumbled onto your blog, I look forward to reading more. :)

    1. You brought tears to my eyes, because I know exactly what you are talking about - that split second when you try and decide if you want to try and explain or not, if you want them to look at your child like a "weird" child or a "not well behaved" child, it is such a tough moment, and it happens so many times. I don't know, I usually don't say anything, I find I don't have the energy to talk about it, or that I start getting emotional when I do, or that people get "a look" in their eyes, so I mostly just prefer the "rude" label. I don't know if it's a good choice, I know it's not fair to Yon, but I can't...
      I am very glad you found my blog, and I hope you'll stay :) Thank you so much for reading, and for what you wrote. xx


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