Amongst the million of things that could, and did, go wrong over the last few months, everything relating to Yon was, like always, front and center. It is amazing how much un-static a static condition can be, I mean, every time I think that we can just close our eyes and rest a bit another shoe drops.
And for some reason the shoes are like dominos, when one drops you really can't stop the rest from toppling over.
It all started in April with the freakiest eye test result we've had for a long while. Whenever anyone asks me about eye problems with kids I always tell them my first two rules - always go to the doctors expecting the worse and kids eye tests are highly unreliable.
But ocular albinism, and this is a well known fact, is a static condition, so rule number two shouldn't apply, right? Wrong. The fact that it is static is the only good part about it - you can't lose whatever eyesight you have. Why is it good? Because after you spend three years fearing for your child's vision, after you spend three years of patching and looking and expecting every eye test to discover that he lost one eye, hearing that it won't happen is a good thing.
Discovering that his left eye has deteriorated over the past six months and he has lost another line on the eye-test, is not a good thing.
Hearing that oops we might have been wrong and he might lose the vision in that eye is not a good thing.
Going back to three months between visits to the hospital instead of six because we have to make sure his vision isn't still deteriorating is not a good thing.
Living with yet more guilt because we didn't notice he has difficulties with his left eye is not a good thing.
Then came the DLA situation. Living in the UK and reading the papers you might think getting benefits is oh so easy. Trying to claim a disability benefit for Yon made me feel that not only is it not "easy", it is darn near impossible because the hurdles and hoops you have to jump through are there just to make you give up. First they lost our papers. Lost it. The forms it took me weeks to fill, and were sent in the special envelope attached in the pack we received from them, were lost. The forms I agonised over, and cried over and filled my heart with despair over my child's future were lost. It is not such a big deal. It happens all the time. That is what the helpline advisor (or whatever the correct role description is) said, just fill it again.
Not a big deal. Sure. I guess the forms that asks for your child to be legally and publicly declared as disabled is just like the form for... I don't know... Enrolling your child in an after-school activity. After all, in both of them you write the child's name and your phone number.
Of course I had a copy of everything I sent, I have been in this "we lost all your documents" story before (though in another branch of the government) so it was just a matter of photocopying it all again and sending it to the right address (not such an easy thing when the address on the form and the address we got on the phone are not the same). It still took me 24 hours to manage it. But hey, not a big deal.
Then I got a letter saying I need to send in my passport and fill in lots of information I have already filled in the first form about where we are from. Send my passport. To the people who already lost my forms. Not bloody likely. So we went to a Job Centre to send "verified copies" which means the information guy at the entrance signed the copies I've made at home. Actually we had to go to two Job Centres because apparently that very difficult procedure of signing your name isn't done everywhere.
Then they lost my forms again.
Then, after I explained I am holding in my hand a verification from the post office that someone there signed for my letter, they apparently found my documents, but informed me that because I have not asked to get child benefits for Yon (which I didn't know I was supposed to do) I can't get the disability benefits for him.
Then they called again to ask me again the same questions I already answered twice.
It is more than four months since we sent in the claim form. The claim form that uses Yon's case (a five years old who is sight impaired) as an example of someone entitled to DLA. And we are still waiting. Now, after the third time in which I gave my NI number and assured everyone that I am indeed a tax paying self-employed citizen, it seems we are waiting "for a decision".
Then came the Islington council people and announced that though we have been waiting for six months for Yon's sight-impaired registration card, it seems that the problem is that... How did she put it on the phone? That they didn't do their job and our "case" is just sitting there on someone's desk waiting. For what? Probably for Yon to be old enough to be moved to the grown-ups team.
This phone call is the sixth one we've had with them since the hospital sent them the papers in December. And it comes after the obligatory "we lost your papers", the very entertaining "we don't do these kind of things", and the hilarious "we are now in the process of reviewing the process. It is going to take an undetermined number of months in which we will be unable to do anything with your claim".
And you know what the saddest part of it all really is? I didn't even want to register him. I hate the idea of registering Yon in some big book of "defected" people, as if he needs to be branded, as if he should have a permanent sign on his forehead. But I am doing it anyway, because when you go to the theatre and you need to prove he is really half blind, so you'll get the seat where he could actually see something, you need that plastic card.
Then there is the school, where everything is fine and we are just exaggerating, where there isn't an ability to get Yon large print books, where it is our fault we don't have a statement for him yet, where it is not really sure how we transition Yon to year one because "all kids have a hard time and he'll be fine".
And lastly we have the developmental and behavioural assessment (CDAT) we have been waiting for for 14 months. Because, who wants to guess? Yes. They, too, have lost our papers. We have now had the school visit (where our teacher told them that everything is fine and we are just exaggerating) and the home visit where Hidai & I spent an hour and a half answering questions about any and every aspect of living with Yon. They have added a formal speech assessment, which to my way of thinking reaffirms what I have been thinking and fearing and telling the school - Yon has a speech delay that can't be explained away by my being over hysterical or his being bilingual. Then we also have the clinical observation session and the "let us tell you what is wrong with your child" session.
The always go to the doctors expecting the worse rule dictates that I should prepare myself to hearing that Yon has an additional problem. Besides the vision, and the speech that is.
So what do you do when the shoes just keep dropping, you ask? what is the lesson here, you wonder? Now that is an easy question. The lesson is, never stand next to scissors. Because you might get annoyed with your hair and it being in your eyes all the time and think that the day the people from the CDAT are coming over is the best day to "just straighten it a little".
Trust me, it does not end well.
And no, there will be no photo of that.
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And for some reason the shoes are like dominos, when one drops you really can't stop the rest from toppling over.
But ocular albinism, and this is a well known fact, is a static condition, so rule number two shouldn't apply, right? Wrong. The fact that it is static is the only good part about it - you can't lose whatever eyesight you have. Why is it good? Because after you spend three years fearing for your child's vision, after you spend three years of patching and looking and expecting every eye test to discover that he lost one eye, hearing that it won't happen is a good thing.
Discovering that his left eye has deteriorated over the past six months and he has lost another line on the eye-test, is not a good thing.
Hearing that oops we might have been wrong and he might lose the vision in that eye is not a good thing.
Going back to three months between visits to the hospital instead of six because we have to make sure his vision isn't still deteriorating is not a good thing.
Living with yet more guilt because we didn't notice he has difficulties with his left eye is not a good thing.
Not a big deal. Sure. I guess the forms that asks for your child to be legally and publicly declared as disabled is just like the form for... I don't know... Enrolling your child in an after-school activity. After all, in both of them you write the child's name and your phone number.
Of course I had a copy of everything I sent, I have been in this "we lost all your documents" story before (though in another branch of the government) so it was just a matter of photocopying it all again and sending it to the right address (not such an easy thing when the address on the form and the address we got on the phone are not the same). It still took me 24 hours to manage it. But hey, not a big deal.
Then I got a letter saying I need to send in my passport and fill in lots of information I have already filled in the first form about where we are from. Send my passport. To the people who already lost my forms. Not bloody likely. So we went to a Job Centre to send "verified copies" which means the information guy at the entrance signed the copies I've made at home. Actually we had to go to two Job Centres because apparently that very difficult procedure of signing your name isn't done everywhere.
Then they lost my forms again.
Then, after I explained I am holding in my hand a verification from the post office that someone there signed for my letter, they apparently found my documents, but informed me that because I have not asked to get child benefits for Yon (which I didn't know I was supposed to do) I can't get the disability benefits for him.
Then they called again to ask me again the same questions I already answered twice.
It is more than four months since we sent in the claim form. The claim form that uses Yon's case (a five years old who is sight impaired) as an example of someone entitled to DLA. And we are still waiting. Now, after the third time in which I gave my NI number and assured everyone that I am indeed a tax paying self-employed citizen, it seems we are waiting "for a decision".
This phone call is the sixth one we've had with them since the hospital sent them the papers in December. And it comes after the obligatory "we lost your papers", the very entertaining "we don't do these kind of things", and the hilarious "we are now in the process of reviewing the process. It is going to take an undetermined number of months in which we will be unable to do anything with your claim".
And you know what the saddest part of it all really is? I didn't even want to register him. I hate the idea of registering Yon in some big book of "defected" people, as if he needs to be branded, as if he should have a permanent sign on his forehead. But I am doing it anyway, because when you go to the theatre and you need to prove he is really half blind, so you'll get the seat where he could actually see something, you need that plastic card.
The always go to the doctors expecting the worse rule dictates that I should prepare myself to hearing that Yon has an additional problem. Besides the vision, and the speech that is.
Trust me, it does not end well.
And no, there will be no photo of that.
