Friday, January 27, 2012

Proofs of understanding


Sometimes I wish that we would live in 'Big Brother House'. You probably think if I'm crazy and I might be.

Last few months me and Janez many times heard from the specialists that Patrik don't or can not show that he really understands us. We told them that this is not true but as they saw him for few minutes of his life, their saying 'stands'. What a 'bullshit' (sorry for my writings).

Yesterday he showed us again how good his understanding is.

After late lunch we (Patrik and I) stayed in the kitchen. Don't worry I was not so good wife to clean it all up right away... I was with Patrik as he didn't want to leave the kitchen, so we played there; hide and seek, jumping (I was behind the lap-top too...)... etc...

At one point Patrik stop seeking my attention and went checking our kitchen cabinets... I was watching him and then when he didn't stop I asked him what he was doing. I got just one 'looooong' look and he continued to check the cabinets. Because of that look I knew what we was looking.

"Patrik if you are still hungry, there is still patties on the counter." He didn't say anything, neither looked me again. But...

he closed the cabinet and check the counter. There was bowl with lid there. He was not facing me when I said:

"Pick it up." As soon as he picked the complete bowl I saw MY mistake, so I corrected my saying:

"Pick the lid up. the patties are in there." Still not facing me, he gave the bowl back to the counter and for a moment checked it and then...

... he picked up the lid and found the patties in the bowl. He reached inside took one out and put the lid back on the bowl...

I confess at that point I so much regretted that we don't have cameras in every room in the house, that I can not even tell you.

It was and is so clearly that he understands us completely, even if we don't show him the things we think about.

Similar episodes happened some time ago in his room. We were finished with the 'work' we had and I was putting away the stuff. When I turned arround I saw him doing what he preferes to do in his room - he was 'dissasembling' the bed. With this I mean that he took down all the bedding and was lifting the mattres up, so that he could 'swing' on the bed slats. Yet that day the mattres didn't want to stand up. I checked why and saw that the pillow was in the middle between the wall and the mattres.

Watching him some minutes and checking how he will resolve the problem he encoutered. He was trying hard to stabilize the mattres but he was not complete successfull. As soon as he tried to 'swing' on the slats, the mattres lost it's balance.

Without calling his name (and Loris was with us) I just say:

"Would you, please, remove the pillow. It's on its way." - With that I meant that the pillow was on mattres's way. He was not facing me as he tried to stabilize the mattres. As soon as he heard me saying this, he went to the end of the bed, took out the pillow and lean the mattres to the wall.

Of course, non of this 'episodes' was caught on the camera.

And for this - I wish to have a 'Big Brother House'. Not to put our life on the real TV, there is no way I would do that, but to have clips like that in our archive to show them to the specialists as it seems our words don't count as proof.

Tuesday, January 24, 2012

Apples - beware of what do you want...

When Patrik was diagnosed with allergy on cows' milk (at his age of 1,5 months), we got very stricted diet - at first for me and then when he started to eat solid food, for him. He was allowed to eat only few types of food... 

Later when we decided to give him solid food we continued with this diet. I hated it. One of the forbidden type of food was also fresh food. When I think of Loris and how she started with solid food... well the difference is huge. She ate (and still eats) a lot of fresh fruit, different types; apples, oranges, watermelon, grapes, bananas, strawberries, blueberries, any type of berries, cherries... you name it, she will eat it.
But, it was not like this with Patrik. And I'm angry with myself to listen to the doctors and dietetitians. When we decided to listen to our common sense - what do the fresh fruit and vegetables have to do with allergy on cows' milk' - and tried to give him fresh fruits, it was just too late. He didn't wanted to try.

His first fruit - at least fresh one - was at his age of 2,5 years he tried in Tunisia watermelon. Every meal we had at the end he wanted watermelon. I confess... I ate it too. They were so different from what we get here. Juicy, sweet... mnjami... :o)
Then we thought: "OK this is it. He started to eat fruit." How wrong we were. When we came home... again the same. He didn't want to eat it. We didn't know what to do. 
I remember myself - some months later - saying to Janez: "If only he would eat apples. If this happens, I will not ask him to eat any other type of fruit." As his constipation was so severe, that nothing helped, my saying was what I really meant.

Well, I don't know when, but it happened. He started to eat - apples. I thought we were in heaven.

How it is today? You see that bowel of apples above? This will be gone day after tommorow if not tommorow. OK I will take some of them with me  to my work, two or three will eat Loris - the rest of them? Patrik.
On Saturday morning we bought 2 kilos of apples (we run out of them) and they were gone till Sunday - watch this - Loris was not home. I ate maybe two. Janez none. I think there were 9 apples in those two kilos, so 7 of 9 (hmmm... anybody watched Star trek Voyager?) he ate. On Sunday we got another bag from my parents - like every Sunday and we already run out of them. Don't misunderstand me - I'm not jealous nor angry...
I just realised that "beware of what do you want" is so much true...

Saturday, January 21, 2012

Imaginary play

It is well known fact that children with ASD have almost no imaginary play. Usually they use their toys for what they are and they say (specialists) that for them imaginary play is very hard to achieve.

Well, Patrik was/is like that. When he plays with his toys, he uses them for what they are. You can see the difference if you look Loris how she is playing or how Patrik played/is mostly playing with toys. Loris is almost nothing than imaginary play; her dolls have different roles in her games, different approaches are in use. Patrik uses the toys more functioning. The wheels goes around, the carterpiller plays songs, the doors are for opening/closing... etc...

Today we were surprised by him. We drove to Austria to get the medicine which we can not get here. It's about 45 minutes drive from Celje to the border with Austria or 1,5 hours on the other direction. It depends which road we use - high way or regional. Today we have chosen the 'long' way as we left Loris with my parents. Tomorow she has a museum workshop she attends every month.

So, driving the long way, we saw that Patrik started to 'take' different perspectives of the world outside his window, yet that was not the only thing we saw.

He took his teddy with him when we left the house and when we already started to go back home - somewhere in the middle of the way, Janez saw in the back mirror, that Patrik started to play with the teddy. It was not cold in the car (22°C - as I don't want less), so his winter jacket was on the back sit with him. I didn't dare to move as I thought that he will stop doing what he was doing. Janez told me that he watched the teddy, and afterwards he put it in his lap and covered him with the jacket, only teddy's head was uncovered in his arms...

Well, although it's winter time, we have no snow. But in Austria they have some, at least where we were (we know that other parts have lots of snow). Patrik saw snow outside the car and covered teddy as he was not dressed...

Maybe this is not much of a imaginary play, but it's a start. 


Monday, January 16, 2012


I was not good last two weeks. I confess... I completely neglected my blog. I'm sorry. Many things runned through my mind - which is from the last Friday a little bit peaceful.
But, we haven't forgotten about RDI and our objectives. As most of them are more in 'life style' as guieded, they are hard to catch on the video.
The last two weeks we tried to catch one 'simple' knowledge/task of Patrik's understanding. We were not successful. Why? Well, read my answer to our consultant:
this is hopeless. We can not catch this on video. For the last fourteen days we did (except to search all the neccessary informations for the complaint) nothing else than trying to catch it on the camera. 

It was actually like this. Camera stands in the corner of the family room - as always - we are watching TV and Patrik jumps up and down as usually. So, this is real life situation - with no prepared thinking - me or Janez, it just doesn't matter who - said to him to move as we don't see - or if he was too loud - we said to him to be quiet as we don't hear (news). This are the same words we use for Loris too.

And Patrik did move or stayed silent for a while. After that happened we realised we had chance to catch it on camera. So we turned it on - BUT - as soon as Patrik saw us doing it, he stayed behind the sofa or in the corner of the room. He stayed out of our view. And this didn't happened once or twice this two weeks. Every time! Yes it is true, camera is not  on all the time, it has no such space on its hard disk, so when we think  - this time we will do it - we can't, as Patrik doesn't want to 'play' his role anymore. 

Now, the question is - will we still focus on this to catch it on camera - we really don't know when this will happen or should we move to another objective and hope that in the mean time we will have success of fullfilling this 'quest' too.
Any idea?
What we will do next, we will learn tommorow...

Saturday, January 07, 2012

One day at home

It's so rarely that we are together at home. Today was such a day. And... what did we learn?

As it is Saturday, the complete cleaning of the house was on the scedule. Bedrooms, kitchen, family room, bathrooms, windows, hallways, WC... Well, I guess most of the time it took us (me) the bookcase which we have through the wall in the family room. My big wish is - I just hope one day I will be able to fullfil it - to have one room in the house full of books I love. Not anykind of books, so just that they are there. No, books I would love to read. But... lets move on.

During the cleaning, we did lunch. Patrik and Loris, both, had their snacks from breakfast till lunch... What was so funny about was, they ate full lunch. Patrik had some 'comments' about mash potato, but at the end, he realised that I was serious and he ate that too.

Not even two houres later it began. On almost half an hour. 

- Loris hungry. Patrik hungry. First snack: 4 apples.

- Patrik still hungry: some pretzels

- Loris hungry: chocolate bar

- Patrik & Loris hungry: 2 apples

- me hungry: slice of bread with walnuts

- Loris & Patrik hungry: additional 2 apples (we run out of them)

- Loris & Patrik hungry: she ate frankfurters with toast, Patrik ate only two slices of his bread.

Now it's almost 7 p.m.. I'm waiting when they will come that they need dinner... :o)

Hmmm... Janez ate nothing after lunch?