How do you take the microscope away?

Yon hates haircuts. I don't know if it is related to his vision problems or not, but it doesn't really matter, does it? A lot of the things Yon does are a sign for his vision problem if you are looking for that, or a sign of autism if you are looking for that, or a sign of asperger if you are looking for that. If you keep looking at him, in every single day you will go through all those diagnosis, and more. Why does it matter what he has? Why should it? A few months ago, while we were just finishing all the "is he or isn't he autistic" discussion in Nursery, I was told that it does matter, to know where his behaviour stems from. And sure, I can understand that. To a point. I really would like to know where it comes from, but it doesn't really change how I need to deal with it. Ok, so because he can't see clearly (which I am never sure how much he does) I should let him just not drink out of a cup? or I should not deal with his habit of putting things in his mouth? Or I should deal with it differently than I would have had he been autistic? I don't think so. I think you deal with it while pushing the "why" to the back of your mind, because for me, if I don't do that, I can't help him as I should. Why? Well, because although parenting a child with a disability makes you face so many challenges you didn't even know where out there, one of the biggest challenges I have to face is the pity. No, not other people's pity. Mine. I pity him. He is so cute, and small, and has that innocent look (mostly you fall for that one when you don't know him enough to know better), and when he does something he shouldn't have, he has a tendency to look at you with his most innocent look and a million-pounds smile that shows off his one dimple, and you look at him and think - But he doesn't see anything. How can I be mad at him? How can I demand the same things from him that I demanded of Ron? How do you parent a child with disability? How do you make sure you act "normal" all the time? How do you discipline? When is enough really enough?

I struggle with these questions every day. Yon is my baby, he is the youngest and the last; he is Ron's younger brother (And with Ron as an example to look up to, I am not completely sure if the standard is fair even if he could see properly...); and he has a disability. And all these factors are intertwined together to make it so hard for me to be the mum I should be. 

I used to feel so guilty about looking at Yon all the time, trying to see what he sees, what he does. How can he grow up when he is constantly under a microscope? When he is on a never ending test? After a while (and so many doctors appointments) I learned that I have to look, because when they ask you questions, when you need to advocate for your child, you are his only hope, you are the only one that really sees him. And if you don't look you won't be able to help him. With Yon it is so easy to pretend that he doesn't have a problem, to smooth over the rough edges, to tuck the abnormalities under the rug, and to chuck it all up to the quirky behaviour of a young and funny child. So easy and so tempting. After all, I don't understand vision problems, I don't understand what and how he sees, so it is easy to "forget" and pretend he sees every thing I see. Nobody understands what children with Ocular Albinism see. I see it all the time on Albinism Facebook groups I am a member of - people saying things like "I asked my son who has albinism if that and that disturbs him". No one knows. No one but Yon knows exactly what and how he sees. So I look at him all the time, I keep it in my mind all the time, or I will get annoyed when he sits practically on the TV, or that he stopped eating because someone moved the cheese box 2 cm to the left, or when we miss the tube because he still hadn't gotten down the stairs. 

But as I look, this nagging question creeps into my mind. If you keep looking, you can't be the parent he deserves. Because when you keep looking and keep pitying him, you are not helping him. You are making it worse. You are establishing him as "different". You are not letting him grow up, face the world, be "normal". How will he believe he can do anything and how will he believe that there is a difference between being disabled and having a disability when you keep on pitying him?

But what else can I do? 

Where does the line between helping and hindering goes? Where does levelling the playing field turns into creating an artificial advantage?

The kids were playing the Wii a few days ago. I love it when they play the Wii, because it took Yon so long to manage it, with the tiny (and very nervous) cursor that keeps moving on the TV. He doesn't like anything except touch screens he can hold an inch from his nose usually, so the fact that he managed to learn how to operate the Wii and moved from watching to participating makes me very happy, and so we "encourage" (meaning - force) Ron to play games that Yon can participate in. He usually doesn't care, and that's not the point of the story. The point is the competitiveness. Ron sees everything in the world as a competition, and he is using Yon's eyes to make sure he wins. And Yon, who does not like to lose, starts crying. And then the yelling starts. What should I have done? What I did was tell Ron that he is never allowed to use Yon's condition in order to win. That Yon is younger, smaller, more vulnerable than him. That I expect him to defend and help his brother. But what should I have done? Was that the right thing to do? It has been eating at me ever since. I am not sure. Because on the other hand, Yon doesn't like to lose and so has a tendency to cheat whenever the game they are playing at that moment doesn't go his way... Of course I tell him not to cheat, but somehow, it is not the same as putting the pressure of his brother's condition on an eight years old. Somehow I am not sure I was helping either of them.

In a different lifetime I translated an article that had a sentence I can't get out of my mind about the fact that our job as parents is to raise our kids so that they could leave us. And every little step we take along the way is exactly that - we want to raise kids that are secure enough, independent enough, happy enough, to want to leave, to be able to survive in the "real world". Be that world nursery, school or camp. I have done enough with Ron. But not with Yon.
He is not ready. I am not ready.
I have to do better, be a better mum, take him out from under the microscope, stop pitying him, stop being afraid to let him experience more of the "real world"

And that is how we get back to haircuts. Yon hates haircuts because he hates it when you touch his head. He likes his hat, but he doesn't like it when you pat his head, or touch it even casually. He used to be really bad about it, and every light touch would lead to a melt-down, but now if I pat him on the top part he is ok with it (though he doesn't like it), but if you touch the back of his head he freaks out. It makes haircuts difficult. Now, I like short hair on boys, but the truth is that if he could have done one of those longer hairstyles nicely I would have gone for that. But he doesn't have the hair for that, and it disturbs his glasses, and when he runs around his hair stick to his head and annoys him (and me). So he, like his brother (who has hair of steel. Don't get me started) have very short hairstyles. Which requires a haircut every month since the age of one. 

Yon is four. And every one of those haircuts was done at home, with a screaming child, a distraught Ron, frantic parents and miserable neighbours. It did not get much better. We got him to the point of not crying from the get go, but somewhere along the way he would start screaming, and only stop about five minutes after we've already finished and stored the machine away. We never dared taking him to a hairdresser because of that, but kept hoping that it will get better with time and experience. That we could shelter him (and us, and the hairdresser) from facing the outside world. But we couldn't do it anymore. The machine started making funny noises the last time we used it, and we thought that maybe scissors will be better than a machine, and so it stood - we have to take him to the hairdresser. 

This Saturday, after I explained it to him, again and again, and made sure he wasn't crying before we even left the house, we walked the five minutes from our home to the hairdresser. 

Ron was first. Hidai was second. Yon was last. 

I have to hand it to the hairdresser. She was kind, nice and very child friendly. You could also see she doesn't believe us when we told her he will cry through the whole thing. 

He didn't. He held the machine (which is far less noisy than the one we have at home, so that helped), and she gave him a comb to play with, and his robe had animals on it, and he didn't get any hairs on him during, which also helped.

He did cry when she did the back of his head, just like at home, but I have to hand it to her, she didn't even flinch, and we asked her to use scissors which made it better, but the problem is once the screaming starts it is almost impossible to stop it, and he calmed down completely when we were half way home. It wasn't perfect, it was so hard to compare him with how Ron sat there getting his haircut, but it was a step in the right direction. 

For Yon it was a step towards being able to get a haircut.  

For me it was a step towards relinquishing the control, towards setting him free to grow up.