I’ve been stuck in the same place with no ability to move. I’ve spent the last month in “Disability Land”, you know, the place where everything you do and everything you see is disability related. I look at my kids, at my family, at my friends, at my Facebook feed, and all I see I see through the lenses of Yon’s disability and my needs. I have been physically ill, binge-watching all seasons of all NCIS series, baking like a crazy person and unable to combat the depression and anxiety and bitchiness that have washed over me in waves.
And as a sign of a true catastrophe, even chocolate did not help (and it’s not like I haven’t tried. After all I am a big believer in – what a small amount of chocolate won’t heal a huge one for sure will).
Having to take Yon to the educational-psychologist for his new diagnosis was as difficult as it was the first time around. Even harder, because this time we had to explain it to him. Where are we going, why are we going, what is going to happen? Sitting in front of an 8 years old filled with anxiety and fears and explaining that “it’s nothing really, just to make sure the school knows how best to help you so you’ll have the best school year ever” even though you know you are lying through your teeth and are really hoping he doesn’t pick up on it, is so much harder than taking a 3 years old to “play a little with XXX”. There was no playing involved this time, just questions and tests and looking. So much looking. I hate it when they “look”, I immediately feel like I did something wrong, or said something wrong, or just a really horrible parent. After all, who takes their kids through so many moves? Who does homeschooling? Who doesn’t employ an army of therapists and professionals to help with their child? And who in their right mind knows what Ocular Albinism is?
It was 4 hours, in which we got asked all these questions and got to fill the usual lovely questionnaires detailing every little thing Yon finds difficult on a scale of 1-5, and Yon got to do a concentration test, a reading and comprehension test, a writing test, an IQ test (which I objected to, but was told no one cares about my opinion), and a math test. Even Ron got to sit in when it was time for Family Session.
Yon has decided to cooperate in everything except the writing part, which we were supposed to do at home after the first session. He just couldn’t bring himself to write 5 sense-making neatly-written sentences on a clean piece of paper. Which led to a huge argument where I yelled and he yelled and Ron got all white, and there were chairs flying around, and it ended with one tiny child crying his heart out and not understanding why. Why does he have to do all this? Why does he have Albinism and Asperger? Why is it all so damm difficult? We talked for over an hour, a brutally honest conversation where I got a real insight into my child’s fears and thoughts. Where I learned he is afraid we won’t love him because he has so many fears, and how much he is embarrassed by his fears and ashamed because he can’t control them; how hard it was for him to come with us to the educational psychologist because she is new and in a new place; how hard making friends is to him; how hard it is for him to form sense-making sentences; and how sometimes the world is just too much.
And then we had to go back the next day for the second session.
And then we had to wait. And in that waiting time we’ve had to talk with Ron, who felt neglected and unloved because of all the extra attention we were giving Yon, We had a few of the most autistic days Yon has had in a while, including a broken cabinet door, lost ability to communicate, inability to suffer touch or food, no control of movement, and lengthly talks about MineCraft at really odd times, and for the grand finale Ron wanted to talk about puberty.
We ended up with a 15 pages report saying everything we already know. It’s a good report, that sums up Yon’s difficulties and needs perfectly, and she only suggested things we agreed on, and does not think we need to get him a full time one-on-one aid. It’s still so hard to read, to see all his difficulties written there, all laid out as if they just “are”. All the work we have been doing for the past four years just erased, all progress he’s made isn’t there, not one nice thing to say about him, about us, about how hard we all worked to get him to where he is. Of course he has issues with social interactions, but gone are the days of only talking about what interests him, and giving an answer that has nothing to do with the question. We are working so hard with him on understanding social communication, understanding situations, humour, patience and waiting his turn in a conversation. Sometimes it feels like every single moment of our life is a teaching opportunity, and none of it is there. It is all crammed into “has difficulties with understanding social situations” and “I suggest working on it”. No kidding. You would think if she thinks that at age 8 it is still really important to write down that he was born at week 38 +1, she could also find a place to say “and has made a very good progress”. But that’s not the point of the report. It’s not really about the child, it’s about the disability.
One of the first things you learn when your child gets diagnosed, is that though it might feel like that to you, in reality the world doesn’t stop spinning. It’s a nicer way of saying that actually, nobody cares. It doesn’t matter if they have a child of their own with special needs, or are mental-health professionals, or are in education, or just had “the revelation of what truly matters in life”. In reality, and especially after the first time you talked about any of it, nobody cares. Nobody cares how heart wrenching it is to sit down and explain to your child, who is afraid to go to the toilet by himself, that you love him regardless, and how hard it is to find ways to make the imaginary flies go away so he won’t be afraid to go to sleep; How hard it is to try and figure out when he will be able to try and cross the road without a hand because you are not sure he sees the cars, and find the right answer to the cane question; How much courage you need to let him go to summer school by himself in a transport service; How many hours a night you spend crying or just not sleeping; How hard the doctor visits are; How much time and effort every little step forward takes; How much of your day goes into making sure all the balls are still up there.
Most of the times it’s ok, there are people who has it rougher, the sun doesn’t revolve around me, we are all busy and life and you know how it is, and honestly how can you complain when you are living a dream life and everything comes easy for you and your child isn’t even all that disabled and you are just exaggerating and finally you get what you deserve? And most of the times I don’t need it. I don’t want to talk about it, I refuse to make my life revolve around it, I don’t need a shoulder, and I don’t want a hug.
But sometimes, sometimes it isn’t fine. And this was one of those times. This was one of those times when a kind word or even a kind icon on Facebook makes all the difference between feeling all alone in the darkness and feeling like there is still some good in this world. This time it wasn’t ok that I looked around and apart from Hidai and my parents, and a few amazing souls who surprised and supported me, not one of the people who were supposed to be there, was there. Family, friends, people who I stood by when they needed it, they were all gone.
I cried for a week straight.
And then Yon came to each and every one of us to ask who he is on the inside, and if we think he has any worth.
So we did what we do best. We stood up, dusted ourselves off, and celebrated.
We celebrated International Albinism Day with a presentation about albinism and our first real conversation with Yon who explained exactly how and what he sees (apparently, when Yon is without glasses, Ron doesn’t have ears…), and some smoothies.
We celebrated summer with a fancy lunch at a restaurant and a summer-clothes shopping for the kids.
We celebrated Autistic Pride Day with watching a short movie and talking about Asperger and with Autism cookies Yon made (almost) by himself – they are normal biscuits, but in the puzzle shape that represents autism (because autism is a difficult thing to understand).
We celebrated World Music Day with unrelated but really tasty pistacchio cookies.
And we watched Frozen and talked about how hiding who you are and being embarrassed by who your child is, or who you are, or what you can and can’t do is never the right answer.
Even if it does lead to creating Olaf.