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.
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 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.