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.
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.