Small Steps - Amazing Achievements. Stopping to look.

There is a beautiful thing going around the Special Needs blogosphere, a weekly link-party where you Basically share a positive outlook on your child's condition, it's called "small steps - amazing achievements" and is hosted by the Blog author of Ethan's Escapades. I found it last week, and it was there this week as well. It's just that this week she invited me to join in. She doesn't know me, other than I think I left her a comment on her blog, and we are now Twitter buddies. I guess she invited all her Twitter buddies to join. I still felt special. It's fun to be invited to someone else's home (you can tell I don't get out much can't you?). She said I can link anything, past or present, that I published and answer the theme of positivity, of celebrating my child's achievements, or progress he'd made.
I can't join her link-party. I can't even make up an excuse, like I usually do with real-world parties, where I usually use the kids and some illness or other, because the truth is, excuses like these don't work in the virtual world, and besides I wanted to be in that party. I really wanted to be one of those "it's going great" parents, one of those Pollyannas walking around the globe, finding every little glimpse of a positive thing.
I combed through my posts, which one should I choose? the one about his first eye check in London when we discovered we've neglected the child (okay so maybe it wasn't exactly like that, but that's the way it stuck in my mind)? No, I know, the one about his EDD test and diagnosis, where we had to watch him go through those three hours of being stuck to the electromagnets? Or maybe the one when I cried while writing? Or one of my favourites, where we got to a regular parents-teacher meeting and left with a spectrum suspicion? The one with the five stages of grief? I know, how about the one that made us understand that it's not a question of "if he needs help" but of "how much help"? Or my last one, where I discovered Yon is part of what is called Invisible Disabilities?
Apparently I don't have even one post about Yon's condition that is positive. Not one. You might say that the one about what people say when they hear about yon's condition is funny. But that's only if you have the same twisted sense of humor like me.

Walking to school

The really sad truth is that we try so hard to stay in denial, to repress everything to do with his condition, to just stay on auto-pilot and keep on moving. If we stop we crack. If we stop, if we watch him too closely, than the spectrum thing rears its ugly head, than we can't treat him like the "normal" child he needs to be, than I can't stop crying. In my auto-pilot mode I do things like tell him to be careful every time there's a step. Even the ones infront of the house, that he steps on every day. More than once a day. I know it's stupid, but I can't help it. It's out of my mouth before I can think about it. I didn't even notice it until he looked at me about a week ago when we were just about to go down those same steps and said "mummy said be careful". I love my auto-pilot, my last line of defence, and I am not even the worst one. Hidai just refuses to say aloud that there is a problem (unless we are in one of those endless meetings). But over the last year something in my defence wall cracked. I no longer have the luxury of being in complete denial. I had to learn so much, to adjust to so much, to protect him from so much that I can't sit there in my shell and pretend it isn't so. Part of it I guess is that while writing this blog I read so many other blogs about Special children, in each one of those blogs I can identify with in some regards - the behavioural issues, check; the eating problems - check; the vision - obviously; the fear of mainstreaming - check; the fear of new places - check; the one envious of people who have a pill that will cure them - check; the letters to doctors, experts, specialists - check. It doesn't matter to me if Yon's condition is milder than some. I can still see glimpses of him in every one of them. Glimpses of me. It doesn't let you forget that you can do your best to run, but you really cannot hide, it doesn't let you let-go, it weighs on your soul. I can't tell you how many times I finished reading these posts with tears streaming down my face. I feel I have to continue reading, I have to understand more and more this new world we are living in now, and as I gain more knowledge, more information on special needs, on Albinism, on Special children, I think you don't even realise it - how much your world has changed - until you are faced with "outsiders", with people who aren't living it daily, who looks at you funny when you talk special needs, doctors, systems.
And still, I like to pretend that I don't see or that I don't care that he stands an inch from the TV, or that he has to crouch down to read the license plates of cars, or that he doesn't see some of the animals in the zoo, or that he once again mis-recognised someone; I still like to pretend it's okay to postpone a child's birthday to the weekend and not tell him it's today because it's going to be too much out of routine for him; I still try not to think about the meetings we have planned in the school, to put off preparing for them until the last minute, I still declare every such day a Yon day, where nothing else gets done.
I try not to stop and think. Not to dwell, to be practical, to make lists. Because if you research, if you have lists, or a plan, than you don't need to stop and think. But if we don't stop we miss the tiny ways in which he is making those small steps and amazing achievements.
So I stopped. I looked without judging, I enjoyed my child for the gorgeous, smily, funny and smart little boy he is.
Yon learned all the letters - signs, sounds and phonics by himself. I can't tell you how many times I tried to teach him over the years (yes, I know that you are not supposed to teach letters before a child is three. But Yon has the misfortune to be born after Ron. So my comparison base is a little skewed), and he wouldn't. But the minute he decided he wants to, he took the iPad and listened to all the youtube songs grandpa put there for him, and within a week he knew it by heart and has decided it's his favourite thing now.

in the library

Last week he decided on a new game, reading licence-plates. And he can do almost all of them. I was so happy to see him succeeding in reading the letters, we stopped at each and every car (it's a problem for him because of their location at the bottom of the car, and because he can't stan right infront of them).

He saw the sign outside the building complex, that is written a bit high (he can't see well if it's high, so I wasn't even expecting him to try. But he did, and he succeeded).
He saw some of the letters and numbers on the electronic sign inside the tube when we were there on the weekend (again, very high. it never crossed our mind that he will try, let alone succeed).

on the tube

He went around the house looking for letters.

letters at the zoo

He participated nicely in golf on Sunday - waited for his turn, did as was told, managed to hit the ball, supported Ron, and had so much fun.

He can turn on the TV with the Sky remote (the one that you need to press three tiny buttons on for everything to work properly).

He can use the keys and open the front door by himself.

He can operate the WII by himself, which is very tough with the pointer moving all the time.

He used a computer mouse for the first time by himself. Because he wanted a specific song on the iTunes, and he knew how to find it...
He managed to balance himself on the ledge outside the house, which had always terrifies him.

He ate 3 teaspoons of salad without crying / fighting / gagging / feeling sorry for himself.
He was willing to try any food we put infront of him, before declaring it "not good".
All these he did over the last couple of weeks. And all of these I didn't really notice until it crossed my mind that I don't have anything positive to say about Yon's achievements.

He has achieved so much my Yon over the last year. So many things that for a regular child won't be considered achievements at all, just regular things kids do. So many small steps. Writing it all down like this makes me realize how much progress he'd made. How each of those small steps was lost in the fog of the auto-pilot and the routine, and how all of them together make for a very big achievement.