Friday, March 30, 2012

Book worm

For a child who didn't want to learn how to read and who's mother had hard time to get her child behind the first grade tutorial book, I can say that in a few years later I managed to become real book worm. 

I loved libraries. The smell of the books; of paper the books were made by. I was able to read whole night if the book was right. If the story was interesting enought.


I remember one night in my past - I was a teenager - I read the book from Kathleen E. Woodwiss: A Rose in Winter - in my room with lights turned off. The only light I had was a street light outside my balcony window. I finished it when my alarm clock rang. It was time for me to get ready and to go to school. Nice. Beeing awake all night... I don't need to explain.


Then in the years of my High school I tried myself as a writer. Why? Inspite of my Slovene teacher who - for reason unknown to me - hated me whole four years. I just prayed to finish High school ASAP and get rid of her. I never knew what I did to her that first hour in first grade of my High School to deserve such a behaviour. As my writings never satisfied my teacher I started to write and send my stories to different magazines under 'nickname'. And they published them, with quite good rewiews. 

It was last year of my High shool. I brought back home another 'not quite good grade' for my writings. That was enough for my mother. She went to her - although I asked her not to - and had thrown on her desk some of my published stories. How she reacted, I don't know. Neither of them said anything to me.

"I don't care what they say about your writings. For me, you don't know how to write!" - that was all I got from my teacher next day. 

O.K. that was it. That didn't stop me. I wrote... for me. For my soul. And then for my friends, who encouredged me to publish again. So I contacted some magazines and got back in.

It was later, when I met my future husband who encouradged me - to find a publisher and publish the novels as books. Still I was not sure if I'm good enough. 

Then one day I got phone call. A lady from a publishing company called and told me that she got my contact information from the magazine I wrote for. She was interested in publishing my novels. We agreed I send her one of my unpublished stories and after few weeks she proposed a meeting.  

When we came (yes, Janez went with me) to the meeting, a real surprise waited for me. After few words and greetings and... small talk, she said they wanted to published the novel in a hard cover. I just couldn't believed it. As she saw that, she offered me an contract. Who would read it. At that time, I was not sure if that was OK or not. I wanted to take it to someone who knew more about this matters than myself, when she throw infront of me another surprised. 

They already made the book. She put it infront of me on the table. It was really unbelievable. Withouht thinking I signed the contract. It was pure luck I was not fooled. 

I was so proud. Although it was not my real name on it - I used pseudonym - I was proud. 

So we agreed I sent them new novel. And I did - few months later, second book was published. Wow! Well, the payment was late, but who cares (at that time) - my second book was published. 

I sent them third one. They published it too.

But the payment never came on my account. I tried to get them to tell me what was the reason, never got any persuaded reason for it. They tried to convince me to send them new novel, but I said NO! I knew the books selled as I checked some of the bookstores and they told me how much books they got and how quickly they were sold. 

I wrote down several stories after that, but never tried to contact another publisher here in our country. I didn't see the point. Again this became my hobby I loved. 

But then...  I run out of time. Stories are still in my head, but I just can't find the time to get them out on the paper. 


A week or so ago, I found one - unfinished. I know that I started to write it a - a long, long, long - time ago. I know because of some facts in that story. I remember I tried to finished it two years ago on our summer vacation. Never did. So, I printed it and gave it to read to one of my colleagues at work, who likes to read as much as I do. 


On Monday she came into my (our) office and 'cursed' me in laughter. I was wondering why? The explanation was: "FINISHED IT ALREADY!"


I will - I just have to find time...

Monday, March 26, 2012

Versatile Blogger award.... for me?...

... at first I thought it was a joke. But anyway I'm glad I got it. Actually it's my first 'blog award' ever. 

It was passed from Jontybabe, so "Thank you very much ." for it. 

As there are rules what you have to do, when you got it, I will copy them from her blog.

The rules of the award are:
1. Thank and link back to the person who gave you the award (checked)
2. Share seven things about yourself (see below)
3. Send it onto fifteen other bloggers you appreciate and let them know you have awarded it to them (see below)


So, seven things about myself. Hmm... OK, here we go:

1. When I was born, according to my mother I was nameless for three days. Reason? After three daughters my parents already had, they were 100% positive (I wonder what kind of technology they used almost 30+ years ago) the baby my mother was carrying would have been a boy. They had a name for it - Jure. Well, no luck. It was a girl - ME! After three days in the hospital my mother finally came up with my name.

2. At age 2,5 years I almost drowned in the sea. We were on our holidays - and again, according to my mother, they just couldn't managed to get me out of the water. So I was put on a water air cushion and they had a peace from me. But... yes, there is always a but... I managed to fell of the cushion one day and it took them quite a while to notice that I was gone - under water. When some lady near by drag me out it seemed I was OK. Luckily I was. Only fear my mother had was that I will be afraid of water. Again, no luck. My mother told me that in the minute I was dry, I run back into the water and back on the cushion. And still this day - I love see immensely.

3. They said that I was a 'smart' kid, but lazy to learn. As long as I have the possibility to do all my studying in the school - I did them. Later during my primary school the learning system changed and we were not able to do our studying at school - my school end year grade fell for one grade. Only then I learned that I have to study at home. (#(%=#??#*#?#)

4. I love horses and I wanted to study how to run the horse stable. As in our country I was not able to study this, I applied for a one in England.  And they took me in. Unfortunately I didn't go. Reason? My pride. I will not bother you with it.

5. I'm very strange person - I like different kind of animals that others dislike. Some of them are snakes & ravens. I wanted to buy myself a Royal Python. Well, I didn't as my father said if I got one he will never visit me again. 

6. I wanted to work on a cruise ship as a gems seller and got a position. I didn't go. Reason? I met my future husband that month. :o)

7. Last but not least - I LOVE BOOKS. - But this is a theme for a whole new blog post.

Ufff... done! It was not easy.

Now - the third rule from this award. Fell free not to do it. I think it is fun. 
Here are fifteen blogs I read and enjoy. Written in random  order:

1. Baby number 5
2. Autism remediation for our children
3. Being Paul's Mom
4. Lady of Leisure!
5. Looking for Blue Sky
6. Looking in / Looking out
7. Okesanne
8. The Bright Side of Life
9. Kate says stuff
10. Food for Thought - adventures in the not Nigella and not Jamie kitchen  
11. Mystar
12. Sharing stories
13. Pisana rokodelnica
14. The life and Times of Team Kitchen
15. Pikasta presenečenja







     

Sunday, March 25, 2012

An Hour Stolen

Today we changed our clocks' again. We had to put them one hour ahead. From 2 a.m. to 3 a.m.
One hour lost. Stolen. That's how I feel about it. How I always felt about it. 

I already explained - I'm a night person. I can be awake for quite long, but when I finally go to bed and fell asleep --- PLEASE, let me sleep. Don't wake me up too soon!

Patrik doesn't ask at what time I went to bed. He wakes up at 6 a.m. latest. So that means that it will be 7 a.m. from now on, but it is not that simple. Althought we changed the clock, our work, school, preschool start at the same time as before - that means, we will have to wake up an hour sooner to be on time. 

It will take at least one week to get his inner clock back on our rhythm. Until then - fight again. With both of them - Patrik & Loris. 

Please, don't suggest I should go to bed sooner. I tried that. Didn't work. I just can't fall asleep that easy... 

Saturday, March 24, 2012

One Thousand Two Hundred And Thirty Days

That is how long does it takes to get an answer from our Ministry for Health. I'm not joking.

In year 2008 we (Janez & I) sent and application with request that we don't want to vaccine Patrik anymore. The thing is, all children in our country must be vaccined to several different diseases.
Patrik was vaccined  three timesat his age of 6, 7 and 10 months. All thise three vaccines were against Diphteria, Tetanus, Pertussis, H. influenzae type b and Poliomyelitis. 
When it was time to vaccine him against the Morbilli, Parotitis and Rubella, we said 'NO!'. Not because of Autism. We didn't know about it at Patrik's age of 1 year. We said NO because of the suspicion on Allergy on eggs.  
Although that one was not confirmed later, when the results came back, we alreday had our suspicions on Autism, so we said NO, once more. No more vaccination for Patrik.

We are not altogether against the vaccination. Loris was and is vaccined according to the plan. But as long as we have something to say, Patrik will not be vaccined. Again.

So, back then, in year 2008 we sent the application and at the end of October (same year) we got back their demand to fullfil the application with several different documents. We did. We had sent them also the request for the meeting the Committee. That was on 23rd October 2008.

Nothing happened for a year. Patrik pediatritian wanted an answer, so I called them. I was connected through so many people I lost track. Then finally I got the right person on the phone. I told her again why I was calling and she really nicely (I'm NOT sarcastic) explained to me, it will take some time to get back the final answer. Reason was, the Goverment gives them not enough money to solve all the applications. That they can solve only - I believe I remember it right - forty three applications per year. That I don't need to worry as I don't need to vaccine my son, until I don't get back their decision. 

Alrighty then!

I told Patrik's pediatritian what I have been told and she made remarks in Patriks medical record. 

And we waited and waited, and waited... and...

As Patrik was supposed to go to the school last fall, he was invited to see another pediatritian for the exam. She asked me about vaccination and I explained her that he is not and will be not vaccined. I told her our reasons. She understood; my fear that Patrik's condition might get worse after the vaccination is much stronger than my fear, Patrik might get one or more diseases.

We waited some more. Until the beginning of this months. A letter came. Blue one. On Janez's name. We didn't know what was in it, as Janez had to collect it. We just got the note as we were at work. We suspected what was in the letter. So Janez went to the post office two days later, when he had time.

After reading it I didn't know should I laugh or should I be mad.

It was almost the same letter we got 1.230 days ago. They demanded new documents and findings to proceed with the application. We needed to do that in 14 days after we received the letter. 

At first I didn't know what to do, but then I thought of something. This is what we sent them back.
************
Dear Sir/Madam, 

after nearly four years, we received your request for additional documentation on our proposal after cessation of vaccination for our son Patrik Ian Rovere.

New medical documentation doesn't change anything. Our son is still diagnosed with Autism, for which we also made ​​an application for suspension of vaccination.

At the same time with this reply, we send you also request for an interview before the Board of vaccination in accordance with Article 22.c of the Law of infectious diseases. This same request we made ​​in year 2008, but until now we have not been invited for an interview.

Sincerely,
 our signitures from both of us

*************
I wonder how long it will take this time...

Wednesday, March 21, 2012

I AM!

Last week-end was again one of those where we have seen the progress with Patrik.

Patrik is - at least for now still - non verbal. He babbles all the time. I know that there are times when he actually explains thing to us. How do I know that? Well, if you listen what he has to say very, very carefully - you hear him repeating the same babbling again and again. 

I swear that last Thursday I heard him repeat the same things at least four times. As we had a PTA meeting in the school for Loris, he and she were at their Grandma for that hour and a half. 
When I came to pick them up, he came to me and as this was the first time that he actually saw me that day, to greet me and started to babble. Right away I noticed he was trying to tell me something. So I went down on the floor and I tried to understand what he was trying to say to me - I really tried, but couldn't connect nor divide the babbling into the words. 

As he stopped I was somewhat crushed. I so wanted to know what he was telling me. He didn't seem to be angry or frustrated, but I was - at me. My boy was telling me something that was obviously very important to him and I just couldn't understand what.

Next day - on Friday - he surprised me enormously. When I came home from work - just to pick up Loris and drove her to her piano lesson, I looked for Patrik. When I found him behind the sofa I asked for the kiss. Usually he comes and gives one. But... 
instead of the kiss, I got a question: "Zakaj?" (Why?) Loud and clear.
I was so surprised I almost froze. Janez came in and I asked him if he heard what he said. Before Janez managed to answer, Patrik slid behind the sofa with his teddy in his hands and suddenly we heard him laughing so much and so loud that it was almost unbelievable.

But during the week-end we heard a lot of: MAMA, ATA (daddy), KRA-KRA (as as sound of the crow or a raven), ČIVAVA (chihuahua), KOMA (a coma)...

And then it happened again on Saturday - when Janez finally managed to assemble the trampoline I said to Patrik to put on his snickers and then to come to me. His answer to all this my saying. 

"TAKOJ!" (Right away!)

It was again real answer to my words.

And after we returned back in and I started to prepare him an afternoon snack, I heard him: "Kakal sem, sranje!" (I poo, sh&%/t) I went from the kitchen to the family room where he was and asked him what did he say. He repeated. It was something he never did before. To repeat the same words after he already said them. Of course I checked if he really did what he said as it was strange to me, that he would have done in his pants and he didn't. I answered him that he has not done that and that if he needs to go, he knows where the toilet is. I got a short glimpse and afterwards he almost run in there. At that time, he didn't poo, but he did later in the evening. :o) 

Well on Sunday morning he continued his GREAT week-end. When I was preparing his breakfast - a slice of bread - yes I have a "much work" to give him breakfast (he doesn't want anything else) and gave him, he smelled it  as always. As I'm always talking to our boy, although not expecting an answer, and I asked him "Bo v redu?" '(If it is OK?)' and he said back: "BO, BO!" 
The accurate translation to this words would be: "It will. It will." but the real meaning to this words was: "Yes. Yes."

In the afternoon, when we all returned home from my parents, Patrik vanished. As he usually vanishes in his room or behind the sofa, we were not scared where he is. Janez called him by his name in till this Sunday, we never got any reply. We had always had to look for him where he had been. This time he got an answer behind the sofa: "JA?" (Yes?)

In the evening, when we already put both of them to bed I somewhat sensed that Patrik will come down the stairs again. He woke up at 3 a.m. that morning and fell a sleep in the afternoon. That's why 8 p.m. was just to soon for him to go to sleep. And I was right.

He came down and joined us. We were watching TV (don't ask me what was on as I don't remember). Patrik was behind the sofas and checked the bookshelves as usual. 
Suddenly we hear him: "I am. I am." Yes, this time I don't need to translate as it was in English. Janez and I looked at each other and I asked Patrik: "Kaj si?" (What are you?). In response we got another: 

"I AM!

I agreed with him. He really is. 

After that Janez and I exchanged short conversation if he will start to speak  in English and Janez said, that IT JUST DOESN'T MATTER, as long as we can understand him. I agreed to that.

We just finished this 'short' exchange of the opinion when Patrik had spoken again: "ČUJ. ČUJ." (Listen. Listen.) Of course we looked him and Janez asked: "What?"
He smiled at us and said: "ČUJ TO!" (Listen to this.) - three times. 

What was most amazing with this "all week-end talking" was that he was actually repeating himself and after we asked him or said something to him. In the past he never repeated himself. 
He was just like "Michelle from the Resistance" ('Alo, 'Alo): "Listen very carefully. I will say this only once!" And before he was like that. He didn't repeat what he said. If we were lucky enough we heard him, but here and there we just didn't expect him to speak. 

I'm glad to say this was not the end of the talking. Yesterday he stayed with my mom - he had a slight fever and he coughed so we left him home, and today I stayed home, just to be sure that this will not get worse. I asked my mom to write down everything she will hear him say. And she did. 

It was again at breakfast, as she gave him his slice of bread. As it was different kind from ours, he smelled it (as always) and he cheered it with a smile on his face. When my mother asked him "if it OK?" he answered: "JA. JA." (Yes. Yes.

According to my mother, he spoke words again as mama, daddy, aunt... etc... in our language of course.

But I think I will remember the most: 

"I AM!" 

It was a statement. And has the right to it.
                  

Saturday, March 17, 2012

St. Patrik's day


I was always a great fan of St. Patrik's day, although I'm no Irish. Even before we gave our son his name. I fell in love with Irish music more than two decades ago and I still love it. 

So, today it's Patrik's patron's day and somewhat mine 'drinking' night. Don't be alarmed - I don't practice this:

As today is Patrik's patron's day and we always have much trouble what to give him for present, we finaly found the perfect one. At least we hoped for.

In the morning we went to town as every Saturday. Withough Loris. She decided to spend the weekend with her Grandma, Janez's mother. Saturday the only day in a week we can do it withouth too much rushing through the store to get everything we need for the following week. Afterwards we decided to go and buy the gift. Janez's mother contributed for the gift and so did my parents. The first store run out of it so we had to drive 15 minutes to the town near by to get it.
It was funny to see Janez's face when he learned that the big box he got is not the only one. Somehow he managed to get both boxes to the car and it was nice to see Patrik how he touched the boxes when we told him that it's his present and what is in them.

At home I went to prepare lunch and Janez started to bould the trampoline. With no manual he was looking like this.
But as he is as subborn as I'm the middle result was quickly seen.
 
Patrik watched him through the windows but paying no extra attention what Janez is doing. 
It was 10 minutes later when I heard a real laugher from the family room. I went to see what was happening. Patrik was laughing and jumping up and down behind the windows watching Janez to assemble the trampoline. All that was missing was the safety net, yet Patrik recognised what was going to stand on our terrace from today forward.

He ran and started to put on his snickers, showing me that he wants to go out. I know that when Janez is assembling something - it's for the best to leave him alone... So I told Patrik he will have to wait. He was somewhat angry with me, yet he obeyed me, put off his snickers and waited infront the windows for final act.

Unfortunately for him I had lunch prepared so I called Janez in and Patrik to the table. After lunch, which was finished from Patrik side and at the end also from Janez's very quickly, Janez returned to the terrace to finish the assembly and to find out that the manual was hidden under the safety net he took out the last. :o)

It was not long after that, when I first had to test it - if it will bear my weight so it will Patriks's and at the end, also Loris's weight. It did. Patrik was watching me and after I came out I told him to put on his snickers through the window. At first he was stearing at me and then in an instant he run to the hallway and we saw him putting on his snickers in a rush. I hardly managed to get around the house to get him. He was already waiting for me at the door. 

Janez went in, tired as he was awake from the 5:30 a.m. (that was the time Patrik woke up today) and I stayed with him outside.
He was really enjoing the jumping and I was watching him with a smile on my face. Finally we made it. We bought the perfect gift. 

The afternoon slowly passed to the evening and the time to put Patrik into the bed was here. As always Patrik made no fus. After the dinner he went to the loo and afterwards to the bathroom for his evening routine. Not much of a routine, but anyway. 

He was tired. I saw that on his red colored cheeks and his face. He was ready to go to his bed.

After turning off the lights in his room, after closing his door, I was ready to start my 'drinkin night' with a pint of Guinness. :o)

Define normal

I always thought that 'normality' is very relative concept.

But nevertheless, in the past we used the expression: "A you normal?" much to often. Every time someone has done something that was not 'average'. 

Actually - normal is average. 

Everything that is not average we think that it is not normal in one way or the other.

'Normal week' of my family looks like this: Our 'normal' week scedule

So, normal for us is running around until children go to their beds. Normal for us is that large part of the housework is done by my husband. Normal for us is, I'm away from the family for 10,5 hours per weekday, some days even more and some days a little less. Normal for my family is that - at least for the last year - we (my husband and I) are at constant stress in which school - well, not so much in school, but in which program - we will be able to get our son in. Normal for us is that we are constantly battling over our guilt that we are not so much there for our daughter than we are for Patrik. And on the other hand, normal for us is that we are battling over the guilt, we are not doing enough for him either.

Normal for me and my husband is - we are running our lives not just 100%, but 130% or more at some days. When happens that we do not need to run it 130% - we are lost, forgetful and you can not even imagine what things happens when we get some relax time. 

Normal for me is, worrying what will be the future for us - me and my husband... when we will stay alone. Without much of worrying about our children's future...

He*he*he*he... Yes, definitely normal for me is - I'm an everlasting optimist! :o) 

*****************************************************************

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Wednesday, March 14, 2012

Productive anger?

Perhaps... Anger always gives me good ideas.

Remember this: i-just-dont-understand ?

Well with that in my mind, I started to think. OK, I'm trying to do that all the time :o). This time I focused on a problem that I bothers me for a long time. 

Lack of informations, what is going on for and about Autism in our country. They write - "societies" that there should be approximately 20.000 people (children, teenagers & adults) with Autism Spectrum Disorders in our country. If that is true, I dare not say yes or no. I simply don't know. 

Why?

Again; lack of information. How did they come up with this number? I think this anticipate number was made by the 'world' statistic and just 'copied' into our total population number. 

If I count - in this four years that we've been struggling with Autism - well, I should say * struggling with the system * I meet and know exactly 11 families/parents. We know 6 whole families, 2 by e-mails and I'm glad I do, that they contact me; 3 of them... one completely stop communicating, two of them... well, I won't go there...

Believe me, I know through this blog that I write and through the blogs I read and through the FB's different pages and groups, more parents who have children with Autism in the world, than in our country...

So, what productive came out of that anger?

I decided to give it a try and opened a Facebook group for parents with children with autism in our country. 
At the moment page is still 'under construction' as I just made it and contacted my friends if they agree with the idea of sharing information - which will be its main purpose. 
I see & I learned that we don't get the informations. Some of us get some and other get different, and some of us get almost nothing... or too late...

Just yesterday one of mothers I know contacted me that our MD again invited (obviously) only some of the parents on the meeting which was held today at 3 p.m.. Nice - It seems she chose just some of her patients' families for this meeting.

I'm asking you again: Is this raising awareness? Helping all the children with the Autism? 

I can't say, I would attended this meeting. I don't know. But I think I deserve a chance to decide. In most of cases this is taken away from me, from us. Why?

I tired of repeating myself: Lack of information.

p.s. Če se kdo izmed vas, ki berete moj blog, želi pridružiti naši FB skupini staršev otrok z avtizmom v Sloveniji, naj me poišče na FB-ju... Če kdo izmed vas pozna starše otrok z avtizmom v Sloveniji, sporočite naprej... Naj se beseda širi, naj se širijo tudi informacije. Vesela bom. 
:o)



Thursday, March 08, 2012

It's not contagious...for heaven's sake

There is something that bother me... What really bother me is - since Patrik was diagnosed with ASD and developmental delay - we don't have visits anymore.

No visits from our friends! No visits - well, to be honest - almost no visits from my family or Janez's. Actually - the only visits we have - here and there - are from my mum and dad, and from Janez's mum. 

I came from a big family, so does Janez. OK, I can't blame his sister, who lives in Canada, or Janez's grand mums... 
nevertheless about the others...including our friends... I just don't know what to think. 

Again, don't missunderstand... We are welcome everywhere we go - at least I hope it is so... Just no one comes and visits. 

We tried to figure it out - why is that?

Well, we all know that the world is turning around faster and faster. Who else, than we - parents of the children with special needs - know that. Running around specialist, MD's, working therapists, speech pathologist, etc..., etc... not to mention that some of us just have to work - to get through the month...

We understand that, but then - next question arises: how can they visit others?... Just not us. We are not living so far away. Actually you can drive around our country in a day. Driving from the 'far' east to the 'far' west - with a car - you need approximately or better maximum 5 hours. Yes, those who are not from here, don't look so astonish... :o)

We thought about this hard... Why? Is it us... Can't be. We had visits in the past... Did we do something wrong? We have no answer...

This simple question still doesn't give us peace... Here and there we manage to push it away in the deepest corner of our minds...

but... from there a small voice is whispering loudly... 

Is it Patrik's ASD? Do they think that their child/ren will get it from him?

As far as we know... 

Autism is not contageous!

I hope this message will reach, not just people we know and we care about, but all those who doesn't know how to act, when they face the ASD for the first time, and the second, and the third...etc...etc...

We already fell lost, don't let us fell abandoned too...