It's been a year

Yesterday was September 25. Last year on September 25 was the first time we ever heard the words Ocular Albinism. Last year on this day we took Yon to our first regular eye checkup in London, like we did every three month wherever we lived, and after about 5 hours of tests and waiting got to a doctor who said "I think there is more to it than that". September 25 2012 will forever be the day we embarked on a new road, one we never anticipated walking in. As if someone ever does. September 25 2012 was the day our child got the Special label now attached so firmly to his name. It wasn't the horrible day of the EED test. No, that was done three months later, in December 2012. And it wasn't the day we got our diagnosis. No, we got the last formal stamp in April 2013. It wasn't even the day we first started suspecting Yon has vision problems, or the first time we took him to see an eye specialist in Spain, in March 2010. Somehow out of all these options, September 25 was the day our life changed forever. Because that was the day we entered this new world. Though we didn't know it at the time. Looking back today I can hardly comprehend that it's been just a year. I can hardly remember not associating Yon with Ocular Albinism. And on the other hand, in trying to write this paragraph I discovered that I can hardly remember those days and those tests. it seems repression, and not diamonds, is a girl's best friend.
I don't know how it is when you get the diagnosis in an early stage -  in the womb or at birth or even after a year. With Yon there were tests and doctors and patching, and glasses and more doctors, but we always had hope that "it will one day disappear". We looked at him all the time, but just at his eyes. We never judged his behaviour or his physical development through his disability. Because we didn't know he had one. But we also never gave him the help he needed because of his disability. Because we didn't know he had one.

When you get diagnosed late, and age three and a half to get the formal diagnosis is quite late, you question your parenting, the attention you gave your child, the cues you must have missed along the way. And you have the guilt. You can't escape the guilt anyway in parenting but there is a special kind of guilt that you feel when you sit across from your special needs advisor and she looks at you and say "but why wasn't he diagnosed before???" there is a special kind of guilt that hits you when you are told "it's the mother's genes that are solely responsible for his condition". There is a special kind of guilt that you feel right after the moments when you think to yourself I half want him to be more blind, because then he will get the help and attention he needs.

But the main problem with late diagnosis is the time. The time you don't have. You don't have time to adjust, to stop, to breathe, to feel. In cases like ours, where there aren't any life threatening implication, we should have had the time, we should have had less guilt. But when we got the diagnosis we were fighting the system from putting more labels on the him, we had to explain away things we didn't know about, behaviours we weren't aware were problematic, and a diagnosis we still didn't understand ourselves.

Sitting here and looking back at the last year, I think we somehow managed to squeeze in three years worth of learning about vision impairments, Albinism, Ocular Albinism and Autism. But I also think we spent most of the year feeling guilty, wishing it away, feeling sorry for him, and connecting everything he does, everything he is, to his condition. We've spent most of the last year watching him and worrying.

It is quite symbolic that today, one year after, I went to talk to Yon's Reception teacher (and if you've been here before you would know how much I dreaded Reception, and how bad and worried I felt about how things have started). I wanted to know if she thinks he is ready to start full days next week, if he is eating, if he is talking, if he is connecting with other children, if he is playing with other things except animals. I wanted to see if we need another meeting, more one-on-one, more work.
It is symbolic I think, that after a year of worrying non-stop; after I took my first steps on a road that kept me sad and angry and worried with every step I took, that taught me to never go into a meeting expecting anything but the absolute worse, that kept me up more nights than I care to admit; after I learned to see my son through the eyes of his disability, that the first thing she told me was "he is just like every other child".
She said he is eating, he is moving around independently, he is going outside to play, he has friends, he is talkative, he is playing with other things, he even did some painting, and got angry with some kids that annoyed him. A lot of kids, she said, has this developmental jump when they move from nursery to reception.
You don't have to worry so much.