Sunday, October 30, 2011

Patience is a virtue... Part 2

So, let me continue where I left off yesterday...

Last Tuesday - this week - we had another appointment at speech pathologist. Before the appointment I met a friend with her child, which I know through the e-mails. She is also a mother of a boy with autism. We were discousing a lot through last year and a half, but never got a chance to see each other. Well, we saw each other two years ago at one seminar, but that was it. 

So let me apologise: "I'm sorry that I didn't recognise you right away, when you aproached. I'm really a goldfish when I have to connect names and faces. It's terrible of me and I promise to do better next time."

But the speech pathologist came right then so we had to end the brief conversation and Patrik and I went to the meeting. Patrik sat down at the table the minute we came in. I was so proud to tell her what did he all week long. I can't tell if Patrik was disappointed, certanly I was as she didn't even try to see his 'new knowledge'. Again Patrik picked up rolled marbles, glass stones and put them into tin cans... As previous time.

We spoke a little bit, not much, about Patrik's possibilies of education. Which school we had in our minds. I thought I made her clearly. One day later, I realised I was wrong. Maybe she thought that she made it clearly for me. Yet she was defenitely wrong. But... 
I will leave this behind (maybe it would be better to say - infront of me - yet this battle is not lost, nor won).

Again five to ten minutes before the end of the session, she introduced new task to him. Searching for pairs. 
She had two small ring boxes, two snail's houses, two pearl necklaces, two... well, I didn't remember them all. With no explanations she wanted him to know what did she want. O.K. she told me, yet, when we speak with Patrik or about him and he is present, we are always triing to envolve him into conversation. For many people this is strange, but for us is not. He understands us. He is smart boy with inability of speech and some people just can't undestand that. 

Well, of course at first he didn't know what she wanted. Again she 'helped' him pick up the pairs. They did this together two times and the hour finished. We went back home. 
But... (I use quite of 'buts', don't I)... anyway, at home in the afternoon, Patrik again went to the bookshelves - there is the whole wall of bookcases, and we don't have only books there - and he stood infront the box of blocks. Let me tell you that our boy didn't show us in the past much of much of preference to the blocks, so this defenitely surprised me. I took the box from the shelf and opened it at the table. Took some of the blocks out - 4 green and 4 blue - two different shapes and asked him to pick up the pairs. He started and I slowly corrected his doing. 

He did this the whole week. Every time he showed initiation - well, I put the box on the table, beside the piggy bank - we did the task. Later, let be honest - yesterday when he finished again the task, when he decided that he had enough, I realised I made a mess of it. Instead of keep it simple, I managed to complicate it. I forgot to tell him what kind of pairs he had to pick up. Just by the colours, without the shapes? Just by the shapes and without the colours? Well, even the best of us (ha-ha-ha), here and there make the mess where we should do it simple.

I heard one saying a long time ago. I don't know who said it, who is the author, but it goes like this:
"The man who makes no mistakes, usually does nothing!" (unknown)
Many times it gives me some comfort after I realise I made a mistake again. 

But now I began to remind myself:
"You must make as little mistakes as possible. It's not of the sake of your life, it's all about your children. Both children." 


Saturday, October 29, 2011

Patience is a virtue... - Part one

So they say... As a very unpatient person (when there is a waiting for someone who delays every meeting is in question), that was something I have had hard time to do. To understand. 

But those who read my post from the beginning of September, right afterwards our return from England, you remember what kind of 'game' what kind of assignement we had. Back then we needed to wait for Patrik to initiate the activity; to initiate that he wants to be involved in our lifes, not just some observer. We waited for each other and waiting for him was one of the hardest things for me. 

Some of you can imagine. For almost 3 years there was nothing but keeping him involved. Teaching him. Make him avalable whenever we wanted, where ever we wanted... That was a hard work. For all of us. 

But I can say the waiting did payed off. Although at the beginning his initiation was not on every day basis, the last fourteen days he is incredible.

Previous Tuesday Patrik had his first appointment with his new speech pathologist in new Centre. In Ljubljana. I was somewhat asking myself, what to expect. Again my worries were for nothing. Patrik accepted new place, new person. 
OK, I was told that he is not yet ready to speak, so they did some tasks together. She told me (I hope I remember it well), that she wants to see his persistence, coordination, attention to the task and engagement.
She rolled him a marble by marble, Patrik had to catch them and put them into tin can; then she gave him left-right glass stones which he had again to pick up and put them into different tin can... etc... so the first tasks were very similar. 
But - let say - 10 minutes before the hour (45 minutes) were finished, she introduced him a piggy bank (again made of tin) and coins. She offered him coins and waited (not for quite long) what he will do. Patrik did pick up the coin and started to put it into piggy bank, but he didn't knew how. He tried to put it into the hole horizontal way instead of vertical way. After few moments she took his hand and led him how to do it. (By my opinion, everything went to fast)

So, the first 'hour' was over and we went back home. Not long after lunch, Patrik went to the bookshelves we have in our family room and started to look up. He was babbling a lot, so I went to see what is going on. Standing infront the exact book case, where his and Loris's piggy bank stood, I realised in a second what he wants. He wanted to continue the task he did at speech pathologyst. It was obvious that he wanted to do better as before.

I took the piggy bank from the shelf, took some other carton box and invited him to the table. Patrik followed. By his face expression and his anticipation I saw that he is hardly waiting. When I offered him the box with the coins, there was a big smile on his face. He did the task, with minimum help from me, for almost half an hour. It was incredible.

When Janez came home from work and only when he sat down on the couch near the table, he came to him and showed him what he learned. Yes, he had some minor difficulties with different sizes of coins, but he learned how to put coins into piggy bank. Yet that was not enough for him. He actually practised all week and still goes to the piggy bank here and there to put some coins into it.  
A nice way to get more pocketmoney. :o) 


Friday, October 28, 2011

Crazy days...yet, something beautifull...

came along. Patrik has problems how to pick up the pencils, colour pencils etc... He loved to spin them arround between his fingers. When he drew, he held them with full hand and there was nothing (and I tried hard) I could do to changed this.

Yet this week I got photos from Patrik's companion teacher Sabina in preschool. On those pictures he paints with "watercolours". I was astonished when I saw how he holds the paintbrush. Correctly. With no other help from her. That is she and Patrik on the photos.
I was happy as now I'm quite convinced that he will managed and understand, that pencils and colour pencils can be used almost the same.

I will certanly tried this later - when we both will be at home ... I will let you know how will go. :o)

Sunday, October 23, 2011

Sleep and other things...

Acctually it was funny. My prediction was correct. I didn't sleep much yesterday.

First I was at the computer looking for the new law about children with special needs as we got new one this summer but begins to be in use on 1st September 2012. Great, right? When I finaly found it, it was written as all laws. Not readable, not to mention confusing. It can have so many interpretations as there are people who interprete it. 

One more thing; it's not only the law that is changed. The law will 'complete' also three different Regulations, which are not (obviusly) written yet. The old ones are still 'in charge'. And one more thing - we have no Goverment at the moment. So in December we have our elections - again - and before the new Goverment will be selected and begin to work... a lot of water will pass by... 

Knowing our laws, I know that the Regulations will be completely different than what is written in the law. Nothing new. If this will not be like this, I will be very, very surprised.

I fell asleep late - it was almost morning. My mind was like a war field. No wonder that I was a zombie through the day. :o) I always am, if I don't get enought of sleep.

My mind was troubled. I thought about many things we will need when the meeting will come. It should be in November, only 5 days later than Patrik's 6 birthday. What kind of present I will be able to fight for him? What kind of future?

I will not kneal before the 'experts'. There is no way! I may be called buldog or excavator, I don't mind. All I want is that he will have all possibilities and chances as others.

So, why funny? Well, Patrik usually sleeps very good. He goes to his bed (like Loris) at 8 p.m. and sleeps - last few months - till six. Exceptions are week days as we all have to wake up at 5 a.m. He had never problem with sleep. Well, another exceptions are when he sleeps in kindergarten, but then he doesn't go to sleep at 8 p.m. but he is active late night. 
But this night he woke up at 2 a.m.. I just couldn't believe it when I saw it on my clock. Thank God it is sunday. He went to the toilet first, then I took him into our bed. As usually Patrik layed close to Janez. The reason? Janez is hot as Patrik and Loris are. I'm their complete opposite. I'm always cold. I sleep with socks on my feet otherwise I can not sleep. I sleep covered with heavy duvet and blanket, Janez sleeps uncovered and still is warm. 

As he layed close to Janez, he woked, but fell asleep right back. How I envy him... :o) So, Patrik was in the middle and I tried to get Patrik back to sleep, so that even I would have some sleep. Not a chance. Patrik was in his best mood to 'talk'. So, he talked and talked and talked till the morning. You can imagine I have no sleep. 
Actually I was glad, when Loris woke up. I knew the day had come. And I continue to be zombie...  I'm very good at it... :o)

Friday, October 21, 2011

Stress, shock & other horrors...

First of all, I have myself for a strong person. Who can bear many punches from life itself. But here and there there are just too many punches at the same time.

When this happens I simply don't know what to do first. Should I shout and scream? Should I cover myself with a blanket so that the world will not find me? I would love to kick like a captured wild horse...etc... 


At the end common sense prevail.  

I have to FIGHT! There is no doubt about it! 

Not for me, for my son.

Today we got such a terrible information, that I had a hard time to continue working. 

I thank to all my colleagues at work for all the understanding and help I need at those moments. I also thank to those who didn't realise what is happening, yet they unconsciously dragged me out of the den of my missery by giving me some extra and emergency/urgent work. I needed to think about something else. That kept me going. 

But still, the night has come? Will I sleep? I doubt it...

Monday, October 17, 2011

Such a big heart...

... and yet he is so small.

Yesterday he showed us again how good his understanding is... and how much he cares for my parents. Don't misunderstand me. He loves Janez's parents too, but I'm never present nor I get any information what he does, when he visits.

So, why my 'statement' about watching over my parents? Here is why?

In June my mother was in hospital. Really sick and for some days we didn't quite know if she will made it. Uffff... those were crazy and scary days. Luckly she did and she came back home. About two months later she said if she can have Patrik for the night. We agreed and made another arangement with Janez mother so she took Loris for that same night - from Saturday to Sunday. We had a night off... One of few we have had so far...

So, don't let me be too depressed about that, let me continue.

When we drowe Patrik to my parents, we gave my mother many instructions what she can not do; lifting him, jumping with him (what she usually does), spoiling him (what she usually does), that she has to rest, watches of herself, etc... Patrik heard all of thise instructions, yet he didn't give us any signs that he even recognised them as instructions or that he understood what we were talking.

But on Sunday when we came back to pick him up, we heard half impossible things. My mother told us that almost the minute we left day before, Patrik took her hand and led her to the couch. She had to sit down. When she tried to stand up and go to kitchen or some other room, Patrik followed her everywhere. As he saw that she did what she intended to do, he lead her back to the family room and sitted her on her couch. If that was not enought, he helped her lifted her legs on the couch, so literary she had to lay down and rest.

Yet that was not enough. In the evening my mother usually left him fell asleep on his floor cushin, and after he fell asleep, she or my father lifted him and put him on his sofa-bed. Yet that evening he lay on his floor cushin and she and my father talked about who will lift him up after he will fell asleep. As my father had his arm broken last winter and the arm is still not what it used to be, they had this discoussion. They were not finished, when Patrik stood up, went to his bed and fell asleep 5 minutes afterwards... 
Well, we hardly believed to all of this, yet, both, my mother and my father told the same story.

But, on Saturday again, Patrik showed how much he cares. It was in the evening, approximate half an hour before the evening news, when Loris and Patrik were both in my parent's living room as we discoussed in the kitchen. Loris watched her cartoons, when my mom went to see them and she told - mostly Loris - that she can watch her cartoons only half an hour - till 7 p.m., because at that hour the news starts and my father wants to see them. 

I heard Loris asked her when this will be and my mom showed her on a wall clock how the clock hand have to be. After that she returned to the kitchen.
We were talking and talking and from no where we all heard:
"Patrik!!!!!" We looked each other and I said:
"What he had done wrong this time?" I knew by the sound of her voice that nothing terrible happened, that she is displeased by him. My mom stood up and went to the living room and came almost right back.
We all waited for the 'news'. She said:
"Patrik turned the TV channels to the news. Grand pa, go and watch. It's 7 p.m.." I remember myself to look my watch and truely... the time showed 7 p.m....
This is really amazing if you understand that he is not yet 6 years old. Non verbal. A child with autism. Yet with such a good hart to watch over 'other' people...

Sunday, October 16, 2011

Lifestyle activity learning *** RDI learning

I simply love RDI therapy. It teaches me and Janez to teach Patrik things which we are simultaneously teaching Loris every day. Lifestyle activities.

Sometimes I forget that Patrik is not helpless child. That he can has his household activities as well as Loris or Janez or me. His years appropriate of course. 

When I teach Loris some things, she will need in her life, I completely forget that Patrik will need this lessons too. I know that he is a smart child, that he learns quickly... but... as a child with autism, we usually 'indulge' him, although he never even gave any sign that he is not prepared to help us. What a mistake from me and Janez. 

And here is the thing that RDI helps us. The assignments we get are simple and quickly understandable why we are doing this.

Last week we got the assignments to teach Patrik some new lifestyle acitivies as he already mastered some of them off few months ago. And again I thought what to do. What to teach him. Elisa helped with the information to see, what we had already done. As soon as I saw that old list, I remembered what she meant... Yes, here and there even I got lost. Unfortunatly.
So, Patrik will be 6 years old in November, I picked out some more "sophisticated" activities, like: taking out the trash, recycling of the trash, helping me with the laundry, etc... You may think that I'm overdoing, but I don't think so. If Loris can do this, some of them already on her own, so will Patrik do this in the near future. 
He showed us that he is capable of.

Saturday, October 15, 2011

"Skating" princess

Yesterday I took day off. It was sunny but cold outside. I'm guessing that this was the reason that Loris's school organized the skating class in near skating stadium. As it was the last day of the class, parents were invited to join the last hour.

They had similar skating class last year, but last year Janez went to see her. This year I decided to see live session.
As I said, it was sunny day but it was cold - around 5°C in the morning, maybe around 10°C at 11 o'clock, when the class started. I took my camera with me to get her on tape. She didn't skate last year much, but from what I have saw she was brilliant. Yes, of course there were children, who skated better than her, but it was seen that those children skated perhaps much longer and more than her.
At the end they all got a medal - 'golden' skate on it and they were all very happy. She was excited and as a proud mother, so was I. Very much.

Wednesday, October 12, 2011

Stop running around

It's difficult. But we will have to. Our week scedule is full of stuff and we will have to reduce something.
In the past we always made all the visits of our friends and families members. We almost never get any visit. If we do, they are so rarely that it is hard to understand why. Did we do something wrong in the past, that almost no one wants to see us in our house? We didn't find the answer and if we ask them all why... usually the answer is: "We don't have enough time. We are so bussy." 

As if we have it? As if we are not busy!

We are both full time emoployed; Janez is working from 6 a.m. till 3 p.m.; I'm working from 7 a.m. till 3 p.m. - one hour of drive each way. Loris is in second grade, in the afternoon once per week she is attending balet dancing, three times per week piano lessons.

Patrik is in his last year of preschool. We are working hard to teach him everything he will need to know and to do, to be able to go to the best possible school for him. As far as we can see there is only one school here in Slovenia to accept him and it is in Ljubljana. And yet we are not sure if they will accept him, so we are really doing our best to give him the best start.

It is sad, but yes... we get visits so rarely that Loris does not know exactly how to behave when we get some... She is running around, triing to get all the attention, triing to show everything she posses or she can do. 

I apologize to all who feel hurt... but, we always make all the visits; to our friends, to our families and yet when we say that we can not...we feel really bad. I can not even remember when any of our friends came to visit us in our house. This is sad.

Unfortunatly we will have to stop doing that and reduce this running around. We are not able to do that anymore. It is too exausted and we are not doing almost anything else than running arround. Almost no talk for us; for me and Janez. We can not sit down and just be... 

Sometimes we wish to escape from all of this, from this crazy life we are living... Yet we can not. All we can do is to adjust it a little bit and start to breathe and to live a little bit slowly. 

Will we manage? Honestly? I don't know. Certanly I hope so.  

Saturday, October 08, 2011

"What on earth?"

(The story continues: "No, not my son. He is ok. You will see.")

Well, I can say... we were not prepared. And for one and only reason. Wherever we went with Patrik, every specialist, doctor, psihologyst, working terapist... etc... everywhere we had to talk and explane Patrik's condition. They were... well, at least looked like, not interested in Patrik but more in what we have to say. 
When we first met Elza I had as always complete Patrik's medical history with me, and let me say... Although Patrik was aroud 3 years old, yet I had one big blue thick sitemap of his medical reports, with me. I carried that every where. I still do. I have them (as now there are two of them), just in case, in the back of my car.

But... Elsa welcomed us, introduced herself and... off she was on the floor with Patrik. Saying nothing to him, only beeing there with him. We completely frozen. 

What was happening? I looked at Janez, he looked at me. We were clueless. What on earth is happening here? 

We sat down and watched how she slowly tried to connect with Patrik all by herself. Something noone had done before. What she actually did, how Patrik reacted, I can not remember in details. Yet I remember, she somehow managed to get to him without singing his favourite song. It was not for long... but you have to understand that he was, at that time, a child with typical signs of autism. We were astonished.

Another light of hope lighted for our future. Nothing was lost yet... 

p.s. I'm sorry for the post's address... But... Do I have to explane?

Tuesday, October 04, 2011

Good Night... Sleepless Nights...

Good Night - The Beatles

I have always been a person who loved to sleep. But... there is a catch. I'm a night hawk, no morning bird... And this has been the mayor problem all my life.

Buona Notte

I can be awake till early morning hours, with no problem, but when I go to bed and finaly fell asleep, please, don't wake me up untill I wake up myself.

And here is another catch. This is not possible.

I'm full employed who has to wake up every week day (from Monday till Friday) at 05:00 a.m. And this is a huge problem for me. My alarm clock is made 15 minutes ahead of the actual time and it is made 30 minutes before it is the latest I have to get up. Fortunatly it has a snooze button so it rings 4 times (every 8 minutes) before I get up. This was the only solution I found it working.

The hardest thing is, that I'm not the only one like this in our family. My husband is the same, only difference is, he fell asleep at the minute he chooses so. So, usually our going to bed looks like he is already fast sleeping when I finally manage to lay down - and yet I still stear at the ceilling for a long time. If I go to bed before I feel tired, I look at the ceiling for hours. And this is killing me.

And there is the third member of our family - Loris. She is quite the same - as Janez. OK. Usually argues when she has to go to bed, yet fell asleep 5 minutes later when we turn the light off.  As she has to wake up at the same time as we do (some minutes later) she can be so heavy that it would be easier to bear than tolerated. We have an argue every morning. She can not get up. When she finally gets up, she is non-stop complaining. She will not wear this, nor that. She doesn't want to comb her hair as there are full of knots in them... etc...
Untill we all leave the house, she doesn't stop complaining... It's literally killing me, as I would rather be in my bed myself...

Yet, there is the fourth member of our family. Patrik is true sunshine in the morning. When I go to his bedroom to wake him up - most of the time, there is no complaining of any kind. I pick him up and carry him to the hallway - from there he goes alone to the toilet. When he is finished there, he join us in the bathroom where are his clothes and dresses himself. With just a little help of me or Janez. Sometimes even Loris.

The most beautiful thing that happened? What gets me out of the bed?

Morning Sun - Robbie Williams

Patrik's BIG smile on his face. He carries it on every morning. No matter what's the time. And mostly this is helping me get through every morning. You can not be in a bad mood, when you see his smile. Just can't. Simple as that...

Saturday, October 01, 2011

Better a sparrow in our hands than a pigeon on the roof

(The story continues: "No, not my son. He is ok. You will see.")

After we brought the first our official report with suspicion on autism, it seemed like everything will change - yeah, right... Time passed away still nothing was done or made by our medical centre. Finally I managed to get a referral for the development doctor in our medical centre.

There we first got a referral for the only specialist, from who Patrik could get official diagnose. As we had an idea that time is slipping away, I called my sister again. Asked her if she knows someone who knows someone... etc... Luckily she knew someone, who knew someone... I got an appointment in a month and a half. Result? Because Patrik was only 2 and half years old, suspicion on autism. Great. O.K. we were told that he has autism, but, because of some procedural she couldn't give him full diagnose. Understand who can. 

Coming back with the half of diagnose, we were offered a neurophysical therapy and a special educator. We didn't quite understand why we got neurophysical therapy, but anyway better sparrow in our hands than a pigeon on the roof. 
At third visit with the neurophysical therapist, she told us, that she can not understand why would Patrik needed her experties. His motor skills were above average. His balance was perfect. He could climb almost on everything. So, why? We had no answer. She was so nice that she said, she will try to get him to the occupational therapy. And so she did. 

Patrik started to learn different skills. Which ones we were not quite familiar with, as he didn't want to work with the therapist when we were in the room. Only when we left the room, he started to be an apprentice to her. We were told at the end of the hour (45 minutes per week) what they were doing, but we didn't remember it all.

Patrik had appointment also with special educator. Quite soon, maybe in 6 months she offered us new specialist, who as were told, new better with autistic children than she did. We agreed to try.  

Luckly we did. When we all (me and Janez bringing Patrik) came to the Elza, we were prepared to speak everything we knew about Patrik's condition. A surprise waited for us...