Saturday, December 31, 2011

The Three Good Men in December - The 3rd - Father Frost

or 'Dedek Mraz' as we call him in our country. Where he cames from? Many different stories, many different places. In our country he comes from somewhere under Triglav (Triglav is our highest mountain).
[picture is not mine, but taken from: http://www.delo.si/druzba/delova-borza-dela/dedek-mraz-moje-delo-je-en-sam-dopust.html]
So, he will come tonight. It's so funny hiding gifts if the children are awake. 

Well I don't know how long they will be awake. Loris might be awake longer, but I doubt that Patrik will. Maybe if we put him to sleep this afternoon? But that is no guarantie. He just might fall asleep as usuall and wake up at 3 a.m. But we are used to go through the New Year's eve to the new year unconventionaly. No extra celebration. No extra preparation. 


This year might be interesting watching Patrik to unwrap his gift. We got it. Ufff... We just hope he will be so much in it as is in Loris' Christmas present... :o)

********  HAPPY NEW YEAR 2012 to all of you!!! ********

Friday, December 30, 2011

In the room

Patrik and Loris have their own rooms. They are not together in one room, but they sare the same floor of the house. It's like that almost from their birth. We had them in our rooms for as long as maybe six months in a cradle, but as soon as they were to big for the cradle, we gave them their own rooms. Loris did moved once, but I don't remember if Patrik did. I believe his room is his from the start.

Although we were told that the room for child with autism should be 'empty', with only neccessary things and furniture... well, his room is not like that.
He has his bed on the floor - literary - as we had to remove bed's legs. For some time Patrik lied on the floor under the bed. He has the dresser - with toys (he is not playing with them) in the drawers and quite big table with big 'bookcase'. Well in 'bookcase' there is only one shelf full of books in others there are things we work with him. So they are always in the reach.

But, when Patrik is in his room, almost the first thing he does is to undress the bed. Completely. Nothing stays in place. Well he drags his duvet, when we are home, every morning out of the room. He covers his head with it and last month he goes to his sister room. To wake her up. In 5 a.m. or 5:30 a.m. maybe at 6 a.m. Very rarely later... Before he came down the stairs - covering his head. No turning lights. 

At first we were afraid about this, but then... we learned that he is confident in walking in the darkness, so we forget about it. To be honest, we usually woke up when he turned the lights in the family room. He walked so quietly. Yes, we have open doors in our bedroom, but it doesn't help. And I don't want to lock him in his room. I can't do that.
So, every time he goes in his room - to have some space on his own - his room became a mess. Especially the bed. He put all the bed linen - including the cushion - on his table, and moves out of the bed frame the mattress and... well till today I didn't know what exactly he was doing. When the noise from his room was too loud I always went to him, put together the bed and lead him out of the room, or I was most of the times even faster. I went straight behind him to his room and lead him out. Mistake? Probably.

Today I decided to let him be. To do what he wants in his room. I knew it will be a mess, but I said to myself... 'Hey, it's the last day before New Year's eve. I can have a little time for myself.'
But, the noise was too loud every now and then and my curiosity was too big, not to take a peak. With the camera, of course. What he was doing? Well, the clip says it all... 
He practises balance???

Thursday, December 29, 2011

My first loaf of bread




Yes, this is it. In my very, very late twenties... :o) At age 3... and something... Well, in TOP thirties... Ahmmm... 

:o)

What the heck... I'm 37 and I backed my first loaf of bread. Not any kind. It's gluten free loaf of bread. For Patrik. 

He was - he still is - crazy about the bread. When we first learned about his condition - even before the formal diagnosis - we were stunned about his love for bread. Even then he didn't eat everything. 

Well, that his food was so 'poor' I blame us to trust the doctors who had given us such a strict diet at his age of month and a half when we learned that he is allergic to cows' milk. But when he started to eat solid food, he was almost never enough of bread. Any kind of bread. When he didn't want to eat, we had given him a bread. Crazy... I know that now. He actually acted as adictive to bread.

So, waiting for the formal diagnosis and as he was already on strict diet from casein, we decided to try gluten-free food too. 

Wow. It took him 6 months even to try gluten-free bread. We had 6 months of struggle. He accepted pasta and spagetti made from rice and all the other gluten-free stuf, but not bread. At first he smelled the slices, then he just picked them up to feel them... at the end he knew that the bread is not THE BREAD only by looking at the slices...

But we decided to be strong. It was hard. There were days when he ate very little. We almost broke, but luckly we were two. When one was weak the other took the burden on his/her shoulders...

After 6 maybe 7 months, Patrik ate his first free from gluten slice of bread and that was it. We were on our way. 

When I think about that, I'm wondering if putting him on this diet, caused the constipation. Cronical constipation for almost three years. Every end of October till end of April. For three years. No one gave us a magical cure for this. We had to take Patrik almost every week to the hospital for enema. I can not even tell you how hard was that for Patrik. I don't count. Although my 'pain' was enormous, I can not even imagine his. At the end there was 5 of us. Three nurses helped me hold him down, one nurse to do the enema. I just want to forget this. Only last December - yes, it is one year from that - we were told about some laxative (no other before - natural and medical - hadn't helped) that was helping the children with cerebral palsy. Of course this laxative we couldn't buy here in Slovenia. We got it from Austria. And it helped. What a relief... 

But... All thise years I was still wondering why his belly still looked most of the time like a belly from the starving child. As he had his checking appointments with the gastroenterologist, at first he suggested that he might had a celiac disease. When we told him that we put him on the diet almost a year before the appointment, he had no other explanation, except that it might pass.

We hoped.

When the last medical reports from abroad were almost even worse than the first ones, we decided to soften our food. We were not so strick with the food. We didn't check every food he got somewhere else if the gluten is present. If we run out of his bread - we spotted that usually in the morning - we gave him a slice of ours. In the morning, when he finishs his slice of bread he stands in kitchen for so long that he gets a slice of ours... And sometimes it's not enough just one...

For the last few months I'm watching him more closely again. No, he had no regresion in his behaviour. He is not agresive or self-agresive. He is still learning new things. But there is something - I can not tell you what... I just have to figure it out for myself. Actually... I'm afraid that his 'adiction' to gluten is comming back...

So, as the food free from gluten is expensive almost as saffron and as we are home this week, I decided to bake a bread. Today after lunch I started. We had flour free from gluten at home for some time so I took the receipt from there. I was not sure how it will look. At the end look doesn't matter, right?

As Patrik knows when something wrong with the food - especially with the bread - I was waiting for his reaction. When the bread was cold enough for eating, I gave him a slice. He took it in his hands... looked at it... smelled it...

and took his bite. Ufff... that was a relief... At the end one slice was not enough and even Loris wanted to eat it. 

Half of it already gone... :o) - That's the way to go, Mum...   

Monday, December 26, 2011

Christmas day & Christmas miracles

Christmas morning was a lovely time. Patrik slept almost till 7 a.m. That's quite long for him. So I stood up and make sure that both of them Loris & Patrik did their morning 'ritual' (read: went to bathroom) before seeing what was under the tree.


Patrik was finished first as I helped him and I thought as previous years he will show no extra interest what's under the tree...


How wrong was I!!!


He surprised me fully. When he came to the family room he rushed to the tree and started to pull out the presents. I was so shocked that I forgot to take the camera into my hands.

Loris heard his laughter so she rushed out of the bathroom, joining us. As she can read she rush to find her present and gave Patrik his. She also brought the box for me and Janez (one gift - just so that she still believes) and I told her that me and him will check the present later when daddy will wake up.

She was so happy to find her unicorn-pillow that she at first forgot that she asked for two presents. Patrik started to tear down the paper from the box. First time in his life. Never before he did that. But... when the gift was unwrapped, he put the present away. He was looking at Loris' pillow. At that moment I knew we had made a mistake not to buy him similar pillow. But... we will just have to live with that. 

Later in the afternoon as we had lovely sunshine outside - although it was pretty cold - we went on a walk. We were unpleasant surprised to see that the park was almost already in the shadow. So at first we stayed in the playground, where they played for a while, but then I was too cold, so I said to go for a walk anyway. 

Janez told me to persuade Patrik to go off the swing, so I said to him, that we will go for a walk. Patrik did jump of the swing and made another turn back to it, when I repeated the sentence, so he joined me. But after we made two steps, he let go of my hand and went back. 

We turned around to see what was happening. Patrik went to get Loris as she played/collected the stones. As she didn't stand up right away, he pulled her by her jacket hood. He wanted to say to her to finaly MOVE! :o)

In the evening, just maybe half an hour before bedtime, he took in his hands... a childrens' book - Here comes Noddy again. I froze when I came to the family room from our kitchen. He was actually sitting in his armchair with childrens' book on his knees and watched it. He was not playing with the pages, but when he saw what was on the page, turned page by page. Slowly. 

I didn't dare to disturb him. 

Christmas miracles does happen. 

We just have to be open to see them... 

Sunday, December 25, 2011

Christmas tree & Patrik

First off all, let me wish you:

*********************************
Merry Christmas!!!

may your days be filled with love, peace, joy and all the things that matter to
You.
*********************************

Yesterday we made a tree, well Janez cooked Christmas dinner, Loris and I with a help of Patrik put together our Christmas tree. Durring the years we are together (Janez and me) bought so many christmas tree decorations that we could made three trees but... we have no space for that. 

Last few years we have had trouble to decide what color the tree should be. Red and gold? Blue and silver? Silver and Gold? Blue and Red?

This year we didn't have this trouble. We put on what ever the children brought so, the tree is gold, red, silver and blue, with some glas angels, straw stars and small wooden toys... 

Thank god, when we decided years ago how big the tree should be, we decided for a large tree, although... I'm thinking to change it next year - from artificial to real one. Now they even borow live trees in a bucket and after the holidays they take it back and plant it back to the nature. I really play with this idea. Untill now I didn't want to have a live tree just because I didn't want to destroy one. Some of you will think what a crazy idea but that's me.

So, during putting together the tree, at first it was seen that Patrik is disturbed. He was with me and Loris yet away. Didn't want to join. But when the tree stood and we began to put on it the decorations he by himself, decided to help us. He started to look and picking up the christmas balls. So I helped him to put them on the tree.

But later when the tree was done and Janez 'pushed' it to the corner, something very funny started to begin. Patrik started to take off the decorations. Ball after ball, star after star. It looked like that he wants to dissasembe the tree. On one side he took them off, on other we put them back on. As soon as he realised, this was unproductive work he did, he stopped. But not for long.

Few minutes after 'the work' Patrik layed on the flor with his teddy and watched the tree from 'frog perspective'. Loris watched Alice in Wonderland on HBO, when I suddenly noticed that the tree is moving. How can the tree move when it is artificial? I steped accros the family room when I saw him. 

Patrik was dragging the tree out of the corner. He stopped when I said so. I called Janez to put it back on it's place. Only then I realised and knew why Patrik was so upset at the begining and why he was moving the tree. 

Cristmas tree is standing in his corner. We put his armchair in another corner and put the tree in his corner. Of course this upset him. Whole year this corner was his and now, with no extra explanations we 'took' his corner 'away from him'.

I went to him and tried to explane in small words possilbe that he will get his corner back and his armchair, but for the next two weeks we just borrow the corner, so the tree has place to stand there. He gave no signs he understood me, but I knew he did. He left the tree stand in peace.
What about today? Well, we will see... won't we?

This morning Santa brought presents. I tracked him down on NORAD Santa page. Do you know it?

Norad tracks Santa 

Perhaps next year we will be able to track him down together... I hope Loris will not be too 'grown up'. This year we managed to preserve her belief in all three good Men. Next year is under big question mark... We certainly hope...

Saturday, December 24, 2011

The Three Good Men in December - The 2nd - Santa Claus

And here we are. Last days before the year ends. At last I should say. The year circle will soon  be complete. New starts waiting for us. New? 
As I wrote in the beginning of December, we have or celebrate Three good men in December. The first came and gone. Luckly we managed to teach our children modesty, so the presents were not big, yet they were happy. At least I think so. 

We will decorate our Christmas tree in an hour. This is something I brought with me from my family tradition. Janez's family is not religious, mine is, althought I somehow along the way lost that innocent belief.

I still belive in god (that there is something/someone 'larger' than us - that we are not 'the end of the chain' - I really hope you understand what I'm trying to say...). I can say - I believe in God, but I don't believe in the Institution. 

So every year we are making our Christmas tree on 24th of December - not even a day before... although many of our friends and acquaintances made their trees much sooner... There is just somehing on Christmas eve, that the tree can not stand before that.

That was/is my tradition - from my childhood and I'm keeping it. 

Santa Claus is comming tonight.

We made our arrangements with him to bring the right things for Loris, although we didn't get what Patrik needs. Yet, it is so hard to buy him a present as he doesn't show any particulary interest in anything... So we are left on our own instincts. We hoped we would got the thing Patrik needs, yet we were told that it was sold out - we might get it in the Capitol, but today is unfortunatly too late. 

Luckly we have one more Good man in December - so, he will bring (fingers crossed) the right thing for him.

Wednesday, December 21, 2011

Bored to death...

but not me... :o) I'm rarely bored... 
Today after work we asked Sabina if she will join us to do some task with me and Patrik. She agreed. We just wanted to see if there are some changes in Patrik 'knowledge'. 

As the last visit at speech pathologist we were told that it is too soon for him to work with color sorting and to work with paper. She said to me and to Sabina that the paper has too low weight for him. That Patrik does not 'feel' it right. I hope I wrote it down correctly.
About 10 days ago I got a plastic 'board' - actualy in that board Advent Calendar was hidden. But I'm not extra fan for chocolate and Loris didn't want to eat it as she got before an Advent Calendar for herself, so I took out all the chocolate bars and took them to my work. 
When I saw that the board was made from solid plastic I cleaned it and decided to use it with Patrik's tasks... I was right. For color sorting - or for sorting anything at all is quite usefull. Last week we introduced him color sorting almost for the first time at home. We used plastic toy nails for sorting and it went well.

Yesteday he brought the table by him self from his room and offered it to me and Janez. So we did this task on his wish. Again he did it very well.
Today when Sabina showed up Patrik was happy. He really loves her and she does him. It is seen in their interaction. I had to finish piano exercises with Loris so they waited for me. When Loris finished her task and I said to Patrik:
"So, let's us go!" he gave me such a bored look and a sigh that we all heard him. Even Janez in the kitchen. We all laughed.

Comming to his room, Patrik didn't show any 'rebelion' of not doing his tasks we gave him. And then...

... I brought back into his room the board he had left in our family room and put it on the table. I had rearranged it a little... didn't left the sample pieces in the same holes in a one row but arranged it in diagonals, so he had to look carefully and place the right pieces into the right places. Yet...

he leaned his head on his right arm and looked so bored when doing the task. We looked him for a while - Sabina gave him the color paper pieces he had to sort - and then I just said that I had to get the camera.

Unfortunatly when I came back, he stopped leaning his head on his arm, but started to yawn when completing the task. I wanted to laugh but didn't dare. He looked so bored, just like he wanted to ask us - 'Just for how long do you want me to do the same stuff all over again and again? ' Actually I have seen a little cloud above his head with thise words written in it. 
Anyway this I managed to catch on a video... 

Why I know that he was not tired? Because he is still jumping up and down in his room. He is still awake and the time right now is 08:28 p.m. Usually he already sleeps at this hour.

And I have never seen him so bored. Literally bored to death...

Monday, December 19, 2011

The first snow in this winter...

And winter did came... 

Finally Loris said. She hardly waited for the first snow... How fussy she was the last few days...
It was not much... It look like a sugar powder on a donut. But for the children it was enough. 

Last winter we had quite a fairytale... Winter fairytale. As we don't live in the city, we live in the country we have some luck.

On our backyard stands big oak tree and when there is too much snow and the forrest doesn't provide enough food deers come to eat the acorns beneath the tree... Mostly they come in the mornings or late evenings... 
 Maybe we will see them this winter again... 

Sunday, December 18, 2011

Week scedule

Just something what we do. How we are trying to live. To get the mess out of our lives...


And if I remember myself a decade ago - I never lived according to the scedules. I hated them. Now... I got use to it... I had no other choice...

Wednesday, December 14, 2011

Concerto

And here it is. 

Loris's 1st concerto in a real concert hall on a real concert piano. She was so proud of herself. I was and am still proud of her. I know her big issue with shyness, when it comes to perform by herself in front of a unknown people. But... she made it.

After 3 months of learning playing the piano, she played the melody she was supposed to. She finally realised she can do it.

Short but sweet.

I'm really proud mom. We are proud parents.

Sunday, December 11, 2011

Communication tools

This happened this morning. 

Patrik woke up this morning a little bit later than usual. At 6 a.m.  And as I get up with him on Sundays (Janez does the same on Saturdays) I got up and joined him in the living room. I know that he is hungry the minute he wake up, I prepared his weekend breakfast. 

Two slices of his bread and 4 apples. 

Correct. This is his breakfast. He doesn't want any of spreads; no jam, no marmalade, butter, nutella - you name it, he doesn't want it. Neither any of salami or sausage, cheese. I had hard time to accept this but I had to. I had no other choice.

So, he ate his breakfast and I waited for coffie to be done. Turning on the TV was not for him. He is not interested in TV. He rarely watches a cartoon. 

I took his puzzles - two boards together - turned all the pieces upside down and waited. Till today he did one puzzle at the time. I wanted to see if he will recognise which pieces are from which board. I didn't waited long, he finished his task in a minute. I'm not exaggerating.

Just a little bit later Patrik took me my the hand and led me into the kitchen. I knew what he wanted but I decided he can wait untill later. Pretzels. His only treat. Surprisingly he didn't insist.  

There was really nothing good on TV (altough of so many programms) until The Secret of Kells started.

The music of this Irish-French-Belgium cartoon really attacts him. I love complete cartoon: the story, the drawings and at the end, of course, the music.

In the meantime Janez got up and came to the family room. When he saw what we watched he went to the kitchen. Not long after, I saw Patrik carring something to the kitchen.

In the corner of my eyes I saw - he was carrying his PECS communication book

He didn't use this one for a long time. The book is in the family room. Always in his reach. I must admit. We were not quite persistant that he has to use it. We undrestand him or he usually finds other ways to tell us what he wants.

I got up and followed him. When I came around the corner I saw Patrik giving the book to Janez, opened it and searched for the picture of pretzels. How could we refuse his pledge? There was no way we could do it. 

We both hardly cover our surprise. Yet we were happy, as Patrik was when he got his little bowl of pretzels.

We know now... No, we are sure now that we have to give him some communication tool. He can not speak - yet. But he clearly shows he wants to communicate with the 'world'. 

We just have to do... something... to help him.

Friday, December 09, 2011

Guide and Apprentice

Never in my life I wanted to be a teacher. I confess I don't have nerves for. I explane once, twice, three times. Even four times. I will explane the stuff as plain as possible. But I become easily nervous when I see and realise that someone who I believe in his/her intelligence mockes me or just plays stupid, so that he/her doesn't need to do the job. 

I had some specimens like that in my previous job. I needed quite some time to say good-bye.

But now I face the real challenge. Well, two challenges if I correct myself.

First challenge comes from Loris. This year they started to learn how to read and... what can I say. She has my genes. I didn't want to learn how to read also. My mother had quite hard times to get me to read. Because I didn't want to, she read out loud the stories I had to read for my homework. Once, twice, three times, but I had good memory. I memorised those stories, so in the school if I was asked to read the story from the beginning I had read it all the way, but in case if teacher asked me to continue story somewhere in the middle, I had no idea how to read furture. That surprised my first grade teacher, so she called my mother to the school. During the meeting they realised about my good memory. Although my mother said that she will stop reading me my 'homeworks', the teacher said to her: "No. If this is working, continue this way. She will learn." 

And I did. Well, soon enough my mother found new way to persuade me in reading. In that times - three decades ago - the only thing I like so much was 
- that was and is still a bubble drink. Very similar to Coca-Cola. And I was crazy about it. I don't remember how much was the price back then, but I remember I got every day, when I finished reading a 10 dinars (old Yugoslav currency) so I ride my father's bicycle to the store and bought myself a bottle. Yeah!!! Good commercial for the product - I should have sold this story... :o) - And my mind wandered again in a complete different path... :o)

So, Loris doesn't want to read. Wel,l she wants to but she says it is too hard. Last few weeks were very intensive between us when her homework was in question. She made such mistakes in such places that I just knew she is mocking me. Most of the time I rather stood up and went away, before we both lost our nerves. 

A big challenge which has to be resolved... and quickly. Maybe I will copy my mother's practice. The only problem is; Loris doesn't want to drink any bubble drink. Funny, isn't it?

The second challenge infront of me/us is our Patrik. Actually I don't quite know if I should call it a challenge. Patrik shows us almost every day... every hour we spent together that he is ready to be apprentice. That he wants to learn. That he is prepared to follow our lead if only we are prepared to be his guide.

Some posts ago I wrote that it was time for Patrik to help me with the laundry. We did it together all Saturday. He didn't need much of explaining what I want from him and what he had to do. He did it. 
And when both of the maschines worked and if I just went to see how long they will be working... Patrik followed me. Every time. He was persistent almost without me asking him.

The same thing happened on Monday with Janez. I drove Loris to her ballet class and Janez was preparing early supper. When we came home and after we put both children to sleep, he told me how Patrik followed him around the kitchen like a shadow. Altough he turned TV on, Patrik didn't want to watch it. He wanted to be around Janez, to see what he was doing and I believe - to learn that way. Just like the sorcerer's apprentice... :o) - To see every little detail...

So, now it is on US to recognise the right time to be guides to our unique apprentice.

Now this is a real challenge!    

Thursday, December 08, 2011

Cold and other annoyances

...and winter is not yet here. Uhhh, I dislike this time of year. You can wear what ever you want, you can cover your head with whatever you have, put on gloves, thick socks, etc... at the end the changing weather - from -7°C in the morning to +5°C during the day, and some days even warmer, some days colder - gets you... that darn cold.
It started with Loris, then Janez got it after Janez Patrik and... yes, surprisingly this year: ME! 

Last year, although I joked through the whole winter, I had a luck not to get it. My other three members of the family gave it to eachother like a brownies. Loris, Patrik, Janez, Loris, Patrik, Janez... and on and on and on... whole winter... almost whole 5 months. Yet sometimes just running noses, sometimes complete package of cold. And as you know the men... here and there my husband is the same as the others... When the cold was just a little bit harsh than the other days, he fell down half dead. But as he gets around all other times of the year, when he is not feeling sick, I tolerate this. Compromises... :o)... you know...

So, last winter - it was almost spring in the country - when I asked him in joke, when it will be my turn to get sick and the following weekend - I fell 'half dead' on the bed. Not more, just two days. I wished that I would cut my tongue off. We usually say - don't wake the sleeping lion... - I defenitely woke it.
This late autumn it started at work, in the school... almost at the same time on all the places we are going to. I managed to stay on my own two feet for quite long. But on Friday - besides of running noses from Loris and Patrik - Janez started to feel bad. Running nose. Hot forehead. Glass eyes. All the things that let us know, something is not going on right. 
On Monday we all went on our 'second homes' and on Tuesday I had to take Patrik to the speech pathologyist. 

Tuesday morning. As Patrik had his therapy in the preschool I took him there at the same time as always. 
6 a.m. 
I woke up with sore throat and light running nose. Great!!! I picked him up at 8:30 a.m. and went strait to Lj. His hour began at 10 a.m. and lasted for 45 minutes. When we came home, my throat still hurt and I was still dripping from my nose. 

Maybe half na hour later, when Patrik ate his lunch I got a terrible headache and possible fever. For 5 minutes I was hot, not 5 minutes later I was cold. I started to look for some medication and of course, nothing at home. We - Janez & me - take medicine so rarely that we forget to buy new, when the old expire. 
What on earth! And the clock was not 3 p.m. I was sleepy. Of course I couldn't fell asleep untill Janez got home. I hardly wait to hear the front door to unlock. I saw Janez's face in some distant shadow. 
I tried to sleep - no use. Loris wanted me to be with her. Janez tried to get her away. Well, he managed - for 5 minutes at the time. What they did those 3 hours when I tried to rest, I don't know. When Janez drove Loris to her piano lesson, I woke up, because someone had to watch over Patrik. I felt better, but I was not yet ME!

To short the long story... I fell asleep very early on Tuesday...

Next morning I realised that this year I didn't wake up the lion... I woke up...
the real dragon.

And the winter is coming...
(Hehehe, how I love this line..) 

:o)

Monday, December 05, 2011

The three good men in December - The 1st - St. Nicholas

Yes, we have three of them. The first one brings the presents today. 

His name is St. Nicolas or Sveti Miklavž as we tell him. This saint really lived in the past and it was known after his good deeds to the poor. Especially to poor girls without dowry. I believe you know him - at least the ones from my part of the planet. And his companions are the devils.

As a child I feared them the most. Although I never saw them. Later when I stopped believe in, I learned that those rattling with the chains was done by my favorite uncle Gabriel. I never saw St. Nicholas, yet when I heard the rattling, I run into my bed, hidding. Who wouldn't? The child with my imagination... 

In the past when I was a child, he brought mostly useful things, like socks, vests, underpants and of course a lot of nuts, oranges, mandarines, locuts beans, dry fruits, etc... I'm trying to keep this tradition also with my children.

Patrik can't write yet, so Loris made her letter for the Saint Nicholas and without telling her to include her brother, she did. With deeds like that she is showing how much she cares about him... (or it could just be that she asures, she will get something - only me thinking this...)

This good man will not make us a lot of trouble - the devils are not running around anymore - at least where we are living now, but the following two... 

Well, this will be completely different story... 

Thursday, December 01, 2011

"Get closer"

This video clip I got today from one of my friends by e-mail. In the e-post was written "Commercial that really touches your heart"!

At first I didn't quite realise what she is trying to tell me. But I watched it anyway. Although I don't watch many of the things that are forwared to me, just to be forwarded. I'm glad that I watched it. 
I had wet eyes at the end.
Later in the afternoon, still at work, Janez called me on my mobile. As I knew he already finished his work and was on his way to get the children from preschool and school, I answered.

His voice was full of joy, of laugh. What happened I asked him and he answered:

"Well, my mom said that she would like to be with Patrik this afternoon, so I just drowe him here. Do you know what he did?"  Of course I didn't. Janez continued:

"When I opened the car door, let him out and gave him his backpack (the things he carries with him in preschool), he looked at me, said: "TO!" (YEAH!) and run to the front door of the apartment building.
He was so happy and sounded really satisfied. You know he knew that it is finally his day again."

I smiled. What else I could do. 

When we hung our phones I remembered my words which I said a year or two ago to almost all the family (big family from both sides). I knew then that Patrik loves them all. He only had problems to show it. To let them know that he cares.

Back then I said, that if I ever found out that he was hurt, sad or felt 'neglected' because they didn't know how to get closer to him, how to interact with him, how it looked like they want to push him away, because he was/is/will be neuro-atypical, that I will come slap each and everyone of them without words and left. 

Well, I have to admit, a lot changed since then. In fact we all changed; the family, Patrik and at the end, so did I. 

It looks like for better...

Monday, November 28, 2011

Sunny Sunday In Late Autumn

Someone would say: "It's not late Autumn." 

But, for me it is! End of November. 

"Winter is comming." (quote from my last favourite book - well seria - fans you know about which I'm writing about)... Defenitely!!!! - My addition.

For last two weeks we had nothing but fog - well at least I. In the morning fog in Trzin (where I'm working) in the afternoon, when I finally managed to get home - darkness... And I'm so addicted to sun, for natural light. I hate lightboulbs. Especially this new ones. Eco or whatever they call them... But... again... I managed to lost my thoughts... :o) Sorry...

The sun managed to pervades the fog already on Friday. And it was with us on Saturday and also on Sunday. I felt completely different. Last two weeks were really so depressed. Not just for me. I saw that almost all around.
As we have a big oak tree in our back yard, this pile of leaves was just one of them. Janez put it together already on Friday (I was not so good) and on Sunday, when we came back from my mothers, we as a family stayed out and filled the bags with them. Even Patrik helped although Janez at first said that he doesn't need to. But I disagreed.
Well, RDI teaches us that no matter how small the task is, everyone should participate of doing it. 
 
At first he run to the swing, but when he saw us doing something. Something he never done it before. It was just like he waited for an invitation. I called him and he came right away. He didn't pick up a whole arms of leaves - I think that would be too much to expect - but he helped as much as he knew how...
 
 Bit by bit, leaf by leaf he filled the bags, with the smile on his face. 

Later on, when Janez bound the bags he was watching him with so much curiosity and at the end with much comprehension that if we wouldn't run out of the bags... - the rest of the pile is clearly seen -  

- next bag probably he would try to bind together... We will see next time if he will succeed...

At the end, it was a wonderfull Sunday. Although "Winter is Comming" we certanly hope for more Sundays like this one.

 


 

Saturday, November 26, 2011

Staying home?

Yesterday we had a day off. It was Friday and we didn't go to work. WOW! 

It was a wonderful day. In the afternoon the sun came out of the fog and clouds. We haven't seen it in our city for days. 

In the morning we didn't need to wake up so early in the morning. Like use to. No, today we had time to get Loris to the school and Patrik to preschool. We woke up at 06:30 a.m. Otherwise we woke up at 5 a.m. 

As Loris had to be in the school at 07:45 a.m. and we told his preschool teacher that Patrik will be in preschool at 8 a.m. we had plenty of time. We dressed. I made them breakfast... OK I made Loris and Patrik breakfast. Patrik ate his slice of bread and an apple, Loris asked for two slices of bread with Nutella and a cup of milk.

Usually I don't make them breakfast. It's too early in the morning. Patrik eats his slice of bread every morning, Janez's mother, who usually babysits Loris until she has to be in the school, told us, she will take care about her breakfast. 

We agree on Thursday that we will take them together to their places.

After delivering them to school and preschool, we went home. Janez stayed outside and went on the oak leafs - it finally threw all on the ground. 
Janez said not a long time ago, he wished our oak would have been just the same as the willow from Harry Potter. Do you remember? One leaf fell of her and she shaked them all down from the branches at once.


Nevertheless, I went inside. Was I good as Janez, I won't tell you. :o)

But as we usually do our grocery shopping on Friday late afternoon or early Saturday morning, we decided to do it before we will pick up our children. And we did. WOW. We made it. Lazy afternoon waited for us.

We picked up Patrik, afterwards Loris and went home. Janez's mother called and said she will come and visit, so later she did. Janez prepared late lunch and I drove Loris to her piano lesson. 

Late in the evening I said to Janez that how easy and slowly day it was. No rush in the morning. No rush in the afternoon. Especially morning was nice. No one nervous. No screaming. No rushing. No panic. We did everthing yet noone was angry on anyone.

Would I stay home for that? It would be nice. Perhaps. Maybe. 

But at this point our finances doesn't allow it. So it is stupid to think about it.

In the future?...

If we win on Euro lottery... :o) 

Who knows...

Yet, I don't know if I would manage to be "just a Mom". I salute you all who can.

Wednesday, November 23, 2011

A-HA moments

this is something I love with RDI... They remind me that Patrik can be as good apprentice as Loris, if only we do it right. We have left him out of house choirs for long enough. It's time that he start to help bit by bit. 

I can see how proud Loris is when I let her go to the balet dancing alone - crossing one of the bussiest street in our town; when she is alowed to go to the piano lessons alone, without taking my hand. It's that special look on her face, in her eyes: "Look I can do it alone."
And so I asked myself, why I don't let Patrik to feel that same feeling? Of course I will not let him cross the street alone. Yet! First of all, he is only six years old! At the moment he is non-verbal.

Actually I never let him go anywhere alone, accept from the car to the preschool, or from the car to my parents house - when the car is already parked on the parking or backyard. I don't even remember if he showed any wish to go anywhere alone. It is true; in the summer when we were at my mothers and he wanted to play - most of the time he run to our neighbours backyard and waited to be cought. But that's it.

So, how to help him acomplish that feeling of pride, feeling of beeing accomplish... RDI helped me here. Lifestyle activities. According to his willingness to help, to do something (OK, sometimes he shows no desire to help, but this is so common with Loris, that we have almost no argument when Patrik show us so) apparently we chose the right lifestyle activities...  

Me and Patrik started to take out the trash. At least plastic ones. So we are doing this almost every day, when the trash bag is full. Sometimes I prepare two bags, one for me (large one) and one for him (small one) and we are on our way to the trash bin.
And at the trash bin he had his A-HA moment. Our trash bin for plastic is almost as  big as Patrik if not even bigger... for a little centimeters. So if Patrik wants to put the trash into the bin, I have to open the bin and help him lift the bag.

Than the other day I just opened the trash bin put my trash bag into it and waited. I didn't help him put in the bag right away. Instead I waited. He tried to put the bag into it, but he couldn't manage to lift the bag high enough. He waited for some seconds than looked at me and 'offered' me the bag. He realised that he will not be successful if he won't ask for help. It was so nice to see a smile on his face when I closed the trashbin.


Now I'm preparing to teach him how to do the laundry... :o)

Eventually, he will have the knowledge so when he will grow up, every girl will want him...  :o)

 

Tuesday, November 22, 2011

"US" Time - Part Two

Saturday November 19th

We woke up quite 'late'. At 08:00 a.m. In an hour we were on our way. Outside was thick fog which I hate. I haven't seen sun for a week and I desperately needed it. 

Some ten kilometers on a highway and right after we left it the fog started to thinn and there it was. Sun. I breathed quite lightly. Finally.

Half an hour later we came to our destination. Ranch Burger Venise. 

Approximate 15 years ago I have found this place, become a good friend - one of the best friends - with Natascha, whos family runned and now she runns the place with a help of her father. So, we know eachother for 15 years. We did much things together. We went through some rough time and a lot of great too. 

Soon after our arival brunch waited for us. We couldn't have any excuse that we already ate. After that she explaned what was waiting for us. A massage. Sauna. Jacuzzi. And for the cherry on a top of a cake... for me... a horse.

The last time I was on the horse for real - 8 years ago. That was my hobby. Something where I could clear my mind. After that I haven't found the time. 
We went for a walk - a long one. Talked about... our children. Both of them. The theme we can not avoid. 

The day quickly passed away. There was so much things to do. We meet some new interesting people (a massage did me gooooooooooood) and some old ones. Most of them were surprised to see us alone. When we told that we will spend the night, most of them were astonished.

After a great meal, carefully prepared by chef...
...Janez conviced me to play pool. Well, by my opinion we tortured the balls more than to play pool... :o)

Sunday November 20th

Morning came and we woke up in a strange room. At first I didn't know where was I. 

I quickly realised that 'a treat' is waiting for me. An hour on a horse's back. As I didn't have any proper clothes for a horse back ridding with me - I even don't know where I have those clothes and boots - Natascha provided me some. 

Well, if I would looked at first at the size, I wouldn't go through so much trouble to... let us leave that. When I saw the size, I gave up. I knew the last time I had that size on me was a decade ago... :o)

I told her that I will not go with her, but she didn't take my 'NO' for an answer. Finally I gave up. My jeans had to do. So we went to get the horses. She asked me which one I want. As my knowledge of the horses in her care got worse and I knew that Pier is too old to be ridden - although I love that horse still as his 'brother' Ritzke who unfortunatly died several years ago - I decided to take Rudy. A beautifull brown horse, but... with mischievous attitude as I learned along the way.

Later in the afternoon when we say goodbye to Natascha and the others, first we picked up Patrik and after ariving to Celje, we picked up Loris and went home... 

New week was waiting for us.

Anyway, we had great time. On a horse I even forgot on all the probles which are troubling my mind. So, we can say... a mission accomplished. 

I realised, altough so many years passed I didn't forget how to horse back ride, but my muscles began to hurt - TODAY! :o(

It would have been funny if I wouldn't need to run around so much...

Sunday, November 20, 2011

"US" Time - Part One

And we're back. WOW. We had weekend off. Alone. And not home. I can't remember when that happened. The last time I remember we were alone and not home was amost four years ago, when we were in England for 3 days. Janez had some bussiness there and I went along. This weekend was as good as that trip to Bristol, Cam and Glouchester. :o)

How this happened that we were alone? It was a project of many people... 

It started...

Three weeks ago. 

We all visited my friend Natascha. It was nice sunny day, so we were able to sit outside. This was a week  before Patrik's birthday and we talked. 

Than durring the conversation we had, Natascha asked us: 

"Do you have any free time?" We looked at her. She continued:

"I mean that you are alone?" We bursted out laughing. I said:

"You've must be kidding? When? We just explaned you few things since the last time we saw each other." (That was in summer!)

She looked serious.

"This is not OK," she said. "You will loose each other on the way." We were silent. She was right. We both knew that. Yet we didn't know how to change it. We were running around too much. When things in preschool started to be OK, the thing with school happened and is still happening. How to slow down? We didn't have the answer. We still don't.

"Now, listen to me very carefully... (somehow I expected that she will continue: "I will say this only once..." like Michelle from Resistance ('Alo, 'alo) always said it :o) ) ...three weeks from now, find a babysitter or babysitters and come up here. You will have a weekend for free." Before we started to look for the excuses, she said:

"Just stop it. I won't take a 'NO' for an answer. I'm booking you a room for the weekend on 18th of November and that it is. I will not forget." 
We looked at each other and simply said:

"We will do our best."

"No," she replied; "just show up!"

Friday November 18th

We were both working. Loris was at school, Patrik in preschool. As Loris had her piano lesson at 04:30 p.m. and I had arranged with Sabina to come, we knew it will be bussy day. 

In the middle of the day my mobile rung. I checked it quickly who it is and it was just a number. I didn't recognise it and I thought someone from preschool or I don't know who called. Usually I don't answer on numbers that I don't know, but last few months I have to. I don't have all the numbers from 'specialist' and 'members of comminsion' in my mobile (like they would call me). So I answered. 

At first I didn't quite recognise who was calling, but then I started to laught. It was Natascha. She reminded me of our weekend off in her hotel. I promised that we will come.

In the afternoon - crazy houres. I came home, Janez drove Loris to her piano lesson and then to his mother. She agreed that she will take care of her through the weekend. 

Janez and Loris left, Sabina came. 

We worked with Patrik. Suzana, my colleague from work, lend me some teaching toys. All those that we have home Patrik knows and I saw him he became bored, all the time the same toys... No challenge. 

Again we were suprised how quickly he knew what to do with almost each toy. The only problem he had was made up puzzles. We had to show him few times that he had to lift each piece and put it into the other... That was a little bit confusing, jet he was persistant to finish the task.

Janez came back just few minutes before Sabina left. 

I packed Patrik's backpack, took the new teaching toy he showed he likes. Patrik put on his shoes, and his jacket and we were all on our way to Velenje. My parents agreed to look after him. 

We droped him off, went to the store (07:45 p.m.) to buy some groceries for this week, went home I started to do the laundries, Janez cleaned the rest of the house and...

...we went to the bed. Don't ask me about the time when. I don't know...

Wednesday, November 16, 2011

Getting close to the edge

Last two weeks were not nice. The days were hard for Janez and me. We waited for some decision and just learned that - decision will be made in one month. ONE MONTH! Yet they promised that decision will be done last Thursday. 

But that is how it is. We can not do anything but wait. Well, we can do. Read all the Laws and the Regulations related to future schooling of our son. Not nice reading, believe me.

The 'funniest' thing happened just on Monday, when I sent a text message to my sister if she can ask her husband which Law covers home schooling. Yes, she did answer me right away with the name of the Law and which articles are refering to the home schooling. Five of them. From Article 88 to Article 92. But...

(Yes, there is always BUT...)

... when I read those five articles, I found out that I will have to read the whole Law otherwise I will not be informed about everything. Why? In those five articles they  included: second paragraph of Article 28, Article 64, Article 67, Articles 83 to 87, second paragraph of Article 82 and third and fourth paragraph of Article 84 (specifically mentioned)... 

I stopped reading. I had to take a break. For the last 2 weeks (not only last two weeks) but last two weeks I'm so much in Laws and Regulations that I regret I haven't studied law. If only I knew what was waiting for me in my life. 

I never knew that I will have to do so much reading and studying just to get my child with Autism into first grade. In the school that (we hope) is the best for him.

I'm getting dangerously close to the edge... 

But (yes, again, but this is the good 'but') Patrik made so much progress in thise days. Although Loris is in her second grade and she got first evaluation of her knowledge (maths) and let me say - we are very VERY proud parents - he is making his steps to a progress.

Well, as some specialist said to us, that Patrik doesn't have any academic knowledge to put him into the regular educational program, but with adjustements of passing him the knowledge, we decided to 'test' how much he knows. Almost noone tried this before. No specialist, or he was just too jung to understand what they want from him. I don't know the reason.

Sabina helps me work with Patrik at home. For the last few 'days' when we were working togehter with him, we heard several new words. Words which he never spoke before. 

The first one was 'MODRA' (blue). We were trying to show him that blocks are not just for putting into the box, but he can do something else with them. So, I asked him to put blue block on blue block. I told him this sentence (blue block on blue block) again and again for quite some time, because he pressed his fingers against his ears. At some point he lovered his right hand, took a blue block, looked me strait in my eyes and said loud and clear: "MODRA!!!!" (BLUE!!!).  He was in some sort of crunch. After that he put the blue block he held in his hand on the second blue block on the table. 

We were surprised and happy. New word! He repeated! He copied me!

But as they say, "One swallow doesn't bring the spring." we were happy enough that this happened, so we slowed the pace.

Few days later I read in his diary, which we all write (preschool teachers and we) that during a puzzle game he repeated after Sabina OSEM (eight). He had to put  ten toes in right places on the feet and those ten toes were marked with numbers. When he was putting them on right places, Sabina counted written numbers...

Last Friday was most funny after all. Loris had to write for her homework all the names of the members of her family. Of course, first had to be the name of her father. She explaned me that because he is the tallest in our familiy. I smiled. Great escape why she didn't write my name first.

As she 'needs' me to be with her, when she is doing her homework (although I try to get away and just check at the end, how the homework is done) I sat down behind the desk and spelled the name. Janez. Five letters. I can't remember how many times I spelled it. How I slowly said it. 

JaaaaNNNeeeeeZZZZZZZ! 

Too many times I believe, as... 

...when she was almost finished with the name, yet she 'cried' out that she still don't know how it is written and before I managed to said it again, we all heard a voice from the living room:

"Jaanneezzz!"

It was Patrik. 

Janez and I started to laugh.

I believe at the end she brought him close to the edge with her whining. 

This is good start, but (yeah, again) we have to be carefull not to push him OVER the edge. It is not wise... we may - I don't even want to think about it...