Being seen

Yon is four, and all of last week I was planning to write this big post, full of superlatives and emotional stuff to make even the most stone-hearted person cry, one that will make up for all my guilt over not celebrating on the actual date, because of us not wanting to disturb his midweek routine, over him not having a proper party (except for a family one at home, because he really didn't show any interest in more than that), over not sending a cake to nursery (that one was because apparently in our nursery you can celebrate with carrot sticks or breadsticks, but you cannot celebrate with a chocolate cake. I am so angry with this dumb decision, but I really don't want my post to be about that. Even though it really easily could), over feeling that his presents weren't the best ones (they included things like a special computer keyboard, and ABC flash cards. No, it doesn't matter that he loved them).
So yeah, lots of guilt to assuage here.
I went along with my plan and wrote a very nice Facebook post about Yon, and was well on my way to write one here. But then I started thinking about the "magic moments", and which part of Yon's birthday was my "magic moment"? which one was my "amazing achievement" for this week?
And you know what I discovered? that my moment wasn't his birthday, or his delight in seeing his presents and cake, or in him singing happy birthday to himself. It wasn't even the moment he sat down in front of the computer and for the first time ever played on the CBeebies website by himself, or his delight in a new hat (last time we had to change a hat it took some getting used to).
Don't get me wrong, I was very happy and proud and everything with all those things. But my moment was about something else.

Birthday boy

Traditional birthday cake

My moment is about being seen.

We all spend most of our days thinking "everyone" cares, about what we wear, what we think, what we do. You know the saying "Dance like nobody's watching". It's exactly that, we think we are "seen" all the time. I think those of us who has blogs gets it more than others, and I can't tell you how many times I've heard the sentence "but don't write about it in your blog", and it doesn't matter that I explain once and again that I don't use names or photos other than my own / my kids (who don't care about it at the moment), or that let's face it, maybe 3 people will read it. Hidai had a manager in one of his old jobs that was petrified about appearance - what will "the others" think?
And then, one day, you have a Special child. And you disappear. If people see anything, it's the "problem".
One day, you have a Special child and you find out how much nobody really sees you, or your child. How much nobody really cares about what you think, or do, or wear.
One day you become invisible.
Yon has Ocular Albinism, that impairs his vision, and one of the things we learned over the last year is that many of the symptoms of Autism are present in people with vision impairments (it's called Blindism). We were very much unaware of any of that when the school began suspecting Yon of being on the spectrum because it all happened at the same time - they sent us to a spectrum assessment, the doctors gave us the full diagnosis of the Ocular Albinism, and we were bombarded with big words and conflicting information from every direction.
We were lost. We became invisible. The school had his label, the doctors had theirs, and Yon was somewhere in the middle, invisible to everyone.
He, we, worked really hard to change that, to be seen again as a happy-smiling-smart child, and not as a pair of walking glasses. It's not that the school hasn't helped, it's just that once someone has a label it's very hard to take it off, and it will usually determine the way you look at everything.
It took us the last three months to get here, to last week when I wrote about Yon's amazing achievements. It took me those 3 months to stop and look at my child without judging, without feeling that stab of pain in the heart, without worrying that everything he does is a sign of him being on the spectrum, without feeling like a big, fat, failure as a parent and a person.
And then I wanted the whole world to see it too. To not look at him and see the same thing they saw a few month before. I wanted everyone to see HIM. But that is a very tough trick to accomplish, and might hinder our efforts to get the help he needs.
If you have a Special child you know how it is, you spend endless meetings with the school, the specialists, the doctors, talking about all your child's difficulties, the ones that are there and the ones that might be there later, and you do that because you want to make sure that the "system" acknowledges the problems, or difficulties, and find a solution. We have to tell them, listen we need you to help him find his friends on the playground, because he will lose them and get frustrated. Or, listen if he stands up to walk closer to the teacher / whiteboard / book, it's because HE CAN'T SEE. Not because he has a low attention span. We need them to understand things that are tough to understand and to do that, we need to emphasise the problems. And then we want them to look at him and see all the good things, the improvements, the happy-smiling-smart child.
This week we've had 3 meetings, with 5 different people, who we've had to do exactly that with, so they will be ready for him in reception in 2 months time. We never go light-hearted into these meetings, because as record shows, a Yon meeting is never a good one, and we had a lot riding on it, because we need to introduce Yon and his needs to a new head-teacher and a new teacher, and we want him to move to Reception without any additional labels to the can't-see one we already have.
We came prepared, and armed for battle (so to speak).
And then his teacher, and the outreach advisor looked at us and said - Wow. This child is just. Wow.
That was my magical moment.