Saturday, September 03, 2011

"No, not my son. He is ok. You will see."

Those were my first words, when I was suggested that Patrik could have Autism.

Before we found out why Patrik's development didn't go the same way as Loris's, we thought he was deaf. We did quite some visit at the hearing health professional, at the end we got final information that he hears OK, but he was not acting as typical child for that age. He was year and half. He didn't move with the whole body. When he heard the sound, only his eyes moved. Not head, not body. So we had to move on to find what was with him.
First proposal came from my sisters. I was visiting my parents and they were there. We talked and I made a "joke" about how clever Patrik was, ignoring me, when I called him, at that age. 

I'm not sure Simona or Andreja told me about autism. I confess, I didn't know anything about it, but I acted as a mother bear or a lioness. 

"No, not my son. He is OK. You will see." That was my defence.

But then I went home with the children. In the evening - it was nice summer day - four years ago, month or two more, I sat behind the computer and searched the internet. When I found the first page with description of the condition and read it, my eyes filled with tears. There were only two points I couldn't marked with checkmark. Only two. He was (and still isn't) agressive and auto agressive. Others I could marked with BIG RED checkmarks. His speach was lost, he acted as he didn't hear, he started to walk on his toes, his hands were flapping, he was distant, as if he was in some world on his own...etc.. All of them. I was devastated.

I was not smoking at the time, but anyway I searched for the box of cigarettes from my boyfriend. I was 'lucky'. I found one and went out of the house, sat on the staires and burned one. Tears fell down my face, when I left our living room. I couldn't afford this doing in the house - crying - as my mother in law still lived with us and she was there. 
It took me time to calm down and faced the truth. I had another challenge infront of me. Telling my boyfriend. How he will accept this? Will he? Will he believe, what he will read? Will we go seperate ways? What the future will bring us all? 

I felted as I was thrown at the bottom of Dante's hell. No sign for the ninth circle. Just dark bottom with no light anywhere. Only demons, whispering in my ears the worst possible thing you've could imagine.

At the end - after two houres or something, I was ready for almost everything. I had luck that my mother in law in the meantime went sleeping. As Janez was not at home that evening - was his night with his friends - I had time to think how to tell him.

When he came home, I pretended I was sleeping. But I was not. The whole night. Acctually I don't remember if it was Saturday or Sunday next morning - but it was weekend - so when his mother left to town, I put him down behind the computer and opened the page. The same one I read the evening before.

I'm a very fast reader. He is not so fast. So when he was reading what he saw, I have almost bited all my nails off. Maybe if I trained yoga, I would bited my toenails also
When he was finished, he went silent. After few moments I asked him what he had seen in those words. He looked at me and asked me the same, but I wanted his answer. He was short: 
"Patrik."
"That's two of us," was my reply. "So, what will we do?" 
He was silent. Where I found courage for my next words, don't ask me. I don't know.
"I give you free choice. We can go seperate ways, just say so now. Not in two, five...etc... years. I don't want to hear you complaining how this is not what you expected.  I don't need three children. Two need me enough and if this is really true, Patrik will need me even more." 
Janez's look was long and strange. 
"Are you crazy?" he asked me. I didn't say anything. "He is as much my child as is yours. We are in this together."
"This means our life will not be the same. We will have a lot of work to help him."
"Doesn't matter. We are a team. We will stay a team."

We talked a lot after that. What to do. Where to go. Who's help to find. The true voyage began...

So, yesterday we had new appointment with the hearing helth professional. We know that he isn't deaf. He now turns to us when we call his name. He does what he is told - in most cases and if he is willing to. We want to know, why he so often put his hands on his ears. Are there frequencies he can not hear or some of them disturb him? What is with his sensitivity? 

If I compare this visit with his visits at any doctor or health professional (except visit with professor Elza) about year ago; it went very well. Although there was one doctor (in white) and three nurses (in light blue) - the colours he was sensitive on when they saw them 'together in a room' - he made no screaming, no tantrums, nothing. He even gave the doctor his hand when she was greeting him. OK, when she looked at his ears and wanted to clean one (he is very sensitive with his ears - I manage to clean the outer part of the ear, not the inner), he then refused to looked at her. But when the exam was finished, he gave her his hand in goodbye and even waved his own way to them all.

At the end, when we drew the line, we can say, the visit went very well. The analysis we will get by post. We agreed we will make this kind of checks every 6 month, so I hope next one will be even better and the one after that, the best.

I hope in a year at least we will know where are the weaknesses with his hearing. And that is only one thing among all of them.        

2 comments:

  1. Very powerful, thanks for sharing this and so glad you have a team, it really helps x

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    1. Thank you Blue Sky. I hope it will stay that way...

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