December 6, 2013

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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