The beauty of language

Writing here on the blog gives me an opportunity that is really amazing. Before the internet this mass communication, this international mass broadcasting was impossible.
It is quite a revolution we take part in, the information highway people spoke of back in 1995 is really here and it is really vast.
For me porsonally, this gives me direct acess to the thoughts and feelings of another dad, living in the US with lots of similarities to my life. He also collects cars, hides them in a garage and he also has two sons, one of them with a disability.
I am very happy that this blog helped him find me and sharing things with him on email is an important way for me to deal with things around my son V. And my son A, as well.

So when I started to write in English, it was the right decision. This blog has always had more traffic from the US than from Sweden (Yes, even when I wrote in Swedish!) and since V has such a rare disease my hopes to get to know someone with something that looks a tiny bit similar to what he has, well the hope is bigger in the US, right?

My English isn´t very good, not all the time, I know that. And it makes me write a bit more selldom due to the larger effort it takes to first think, then translate, and then write.

But nevertheless this blog was a success for me when people emailed me from different parts of the world and told me something about their own children. Or their own car collections...

And I have always liked to read and write. I read my first word when I was 3 (according to my mom) and I read Roninson Crouse, the second edition, when I was about 8. Old difficult language. But what a freedom it was to be able to absorb all the stories out there!

And now. The irony. A son with so little language of his own. V knows a few words but almost all of them is a syllable in repeat: MA-MA. PA-PA. DI-DI, BA-BA (The last two is the names of two Babblare - toys made to help kids develop their speach)

But just the other day V took a giant leap. Well, to us it was.

We always read to V and A before they go to sleep. Lately he like to hear about "Mamma Mu och Kråkan" - that is somthing like "Mummy Moo and the Crow" a very funny series of books about the jolly Mummy Moo and the grumpy Crow. And then I tried with V.
- Say Mam-ma muuuu!
- Ma-mmma-mma
- Ma-Ma Muuu!
- Ma-Ma....Ma!

And then...
- Ma... Ma... Moooo!

Clearly two different words! Together. In a sentence!

The very first sentence!

***

I really really think you should listen to this episode of RadioLab ath WNYC - it is about words:

http://www.radiolab.org/story/91725-words/

Another hidden toy - NOW REVEALED!

So yes, this blog is about me collecting childrens toys, hiding them for my own kids in the garage. My semi intellectual psycological profile of myself has proven that this is something that I primary do to obtain control when my life is shaking.

It began almost at the same time we found out that V has a brain disease. 

You can read more about this here (in case you don´t believe me or just want to read more stuff when I dig deeper into my twisted mind).
(And if this is new for you, you´re probably a new reader to this blog. Then it might be useful to read this too, that way the pics down below makes a bit more sence)

But the cars is not the only toy I´ve kept hidden from my own kids.

This Christmas I finally decided to "give away" the ol´Nintendo Wii. I made it a present from Santa to the whole family - and never before has a kid (A) been made so happy with such a small economical effort (none, well, I bought the game five years ago but it seems like free now).

V doesn´t get the hang of it yet. We only got New Super Mario Bros. and he can´t understand the connection between the Wiimote and the character on the screen. I should probably try Wii Sports, that´s more easy, I guess. But we really don´t need another game right now, A is playing enough as it is. We actually had to make a schedule for him with 30 minutes slots and an egg timer next to the game. 3x30 minutes on weekdays and 5x30 minutes on holidays. Max.

That has helped. He now can control his behaviour and temper much better.

As to V...

He tries to copy what we do. Shaking the Wiimote desperately. But often facing the wrong direction. And when I play with A and V are forced to either "play" together with us or do something by himself - he cries. He is in a period right now, when he dosen´t want to share things. Neither his toys or the attention of his dad.

But most important - revealing this toy to my kids - has been a success! 

It has made me wonder - should I do the same with my Car Collection?

V and the language

V - now 3 years and 2 months old.

It´s been a while since I wrote something about my son V. Lately, my blog has been mostly about collecting cars, not so much about life with a son with a brain disease.

Partly it´s due to those thrilling episodes about Flash, a real exciting couple of weeks for us Disney Cars diecast fans. And partly it´s because I don´t have the need to write about V so much right now.

When we got the word about his shortage of myelin, his disability and the brain scan - we went into shock. The time after that was a mix of grief, adaptation to this new life we were presented to and acceptance of the new facts of life.

Now things are much less dramatic. Thus I find less things to write about when it comes to V and his life.

But one big change has come to us recently. V has begun to sign. 

He can express himself and he has learned sevral words only during the three weeks of our ongoing vacation (one last week left).

• Eat 
• Hungry
• Wait
• Sour milk
• Sandwich
• Berry
• Apple
• Banana
• Cake
• (Cinnamon) bun
• Grandpa / Grandma
• Play
• Sit
• Fish
• Potato

Yes, it´s a lot of words regarding food, but hey - the boy likes to eat! :)

It was a small revolution when he did his first sign by himself. Now he´s already doing three word sentences like "eat - potato - fish".

As I understand this, we now know that he understands words, he can express words, even combine words.

And the fact that V has better motor skills in his hand than in his mouth (very delicate motor skills needs to be learned to monitor our muths) combined with the fact that both me and my wife and the people that work at V´s daycare center have learned to sign now makes it possible for V to communicate much earlier than if he had to wait for those motor skills to develop in his mouth.

Signing is also seen as a way to motivate speech so we hope that this will help V to learn how to talk faster.

V likes to ape and imitate everything big brother A does (who´s diecast name is ape, how about that?)

Another thing about V is that he now interacts more with his bigger brother A. A is 4,5 years now and they play with toy cars that they sit on and races on all through our house. Laughing out loud. Very loud. Hide and Seek is also something they like to do but V has difficulities to tell who´s looking and who´s hiding...

Helping out

V did som serious cleaning today. He has never been keen on the vacuum cleaner, but since we bought a new one that can run on a very silent mode he has begun to take interest.

My wife attended at a lecture last week about small children (age 0-4) with brain diseases. I was going to as well, but then V caught a cold and I stayed home with him instead.

One of the things Katarina Lindström, children neurologist, said was that children with brain disease often has problems with loud noise. It´s very common among people with autistic syndromes but also with lots of other brain related diseases.

We also found out that there is a swedish "group" of children with White Matter diseases. Good. We often feel alone when we meet other parents that have disabled children. They usually have Downs Syndrome or Cerebral Pares. But V has just Hypomyelinisation. That´s odd, even among disabled people...
But within this White Matter Group there are others that we could learn from or get support from I guess. Hope.

Katarina Lindström also said a few words about the brains special ability to take shortcuts. The placticity of the brain. If you stimulate the brain properly it can develop abbilities in new places, especially if it is a young brain.
So the pressure is on. And it´s on us - the parents. Stimulate V in the right way and he´ll become less disabled.

I guess that´s what I did when I took him for a spinn with the vacuum cleaner today. At least a bit.
And that´s how we´re going to do it. Bit by bit.

And the house will get cleaner and cleaner!

Hello Cars collectors of the world!

The supreme blog Take Five A Day asked me to write a few lines about my blog and how collecting cars works in Sweden. They´ll run the post tonight but for all the rest of you - here is the blogpost.

And to all Take Five A Day-readers that got interested - please scroll down or click on the links to the left to read more - and Welcome All!

A typicals swedish family. But we should have been Volvo´s. Could someone tell Mattel?

I started my blogg ”Collecting Cars” almost immediately after I started to buy cars. At first it was just a good way to display and keep orders of my cars, since I hide them in a closed cabinet in the garage. I don´t wan´t my two sons (2 and 4 years old) to see it.

The madness in that.

But I guess some people reading Take Five A Day could relate?

(And the kids got their own collection. Rather small ones, but hey, they´re not making money for themselves yet!)

But why start to collect childrens toys just to hide them from children? The answer was, as my collection expanded, suddenly clear to me. It was a way to create a part of my life where I still had control.

Me and my wife had some issues with our second son V. We were quite worried about several things and after almost a year we did a magnetic brain scan. It turned out he lacks myelin in his brain. Whiter matter. It means that his brain works much slower than normal brains do and it effects his development over all.

This was of course very bad news and it made med feel sad and distressed. But my new hobby gave my a chance to forget and breathe.

Now my blog is in english, I see that I have som readers outside Sweden and most of the collectors are in the US and I want you to be able to read my thoughts. I´ve also decieded to go public with my life and thoughts, being a dad to a son with a brain disease.

It´s in many ways a different life, but at the same time, it´s all the same. And the collection of cars is getting larger and larger for every month.

But it´s harder and more expensive in Sweden, I got some photos for you Americans, just to show you how lucky you are!

This is how an awerage toy store in Stockholm display cars. We have more or less monopoly in Sweden, there´s two major toy stores (BR and Toy´s R US) but they have the same owners so this is how almost every toy store in Sweden looks like. 

As you could see we have a huge surplus of Petrov Trunkov over here. Go visisti Sweden this summer and buy your own Petrov – a vacation you´l never forget!

This is a bargain. A two-pack for 100 Swedish crowns. Something like 14 USD. That´s what we nomrally pay for ONE car.

This 4-pack costs 379 SEK – 53 USD. But I got ´em already…

I buy most of my cars on the internet. We have a swedish version of E-bay called Tradera.com and there I use to pay like 75 SEK – 10,50 USD for a Rubber Tire Cars2 racer, including shipping.

But recently a new thing – yes it´s really quite a new thing – happened. In a subway station close to my - job a flower shop (!) started to sell cars.

A perfect mix. Flowers to my wife – cars to me!

The store has all kinds of cars, even the ones from the early series of Cars 1.

So I guess it´s not entirely true that this 4 pack is only available at Walmart?  (A store that doesn´t exist in Sweden, of course)

Just look at the beauty of this picture.  Jay in a perfect surrounding of orchids. Nothing strange at all about it.

Being the Not Disabled One

Too much attention? Or too less?

A few months ago me and my wife went on a lecture. It was about brothers and sisters to disabled kids. Swedish author and psychologist Christina Renlund spoke for almost two ours about familys she´d helped. Very often the brother or sister to the disabled had understood, at an really early moment, that something was odd. Something dad or mom was holding back. Something you could sense, see and experience. But yet, everything else seemed normal at the same time.

The danger not to speak about the disease with the sibblings could be that he or she starts to have delusions. It´s not rare that small children, being so self centered in their view at the world, starts to blame themselves. "It was because I kissed my little sister that she got blind" and thoughts of that kind.

So we started to talk to A. Tried to explain. "You know, some of the kids at kindergarten have brown eyes. Some have blue. Or green. It´s the same thing with V. He has a barin that works slower. And that´s nobodys fault, it´s just the way it is."

I know my wife had a great talk with him about something going wrong when V "was in the belly". And that we we´re very sad at first. But not anymore. Now we´re so happy and found of V - as happy as any parents could ever be.
When A heard that, he looked quite serious, almost grave. Then he cuddled up in her knee and just sat there for minutes.

Yes I know kid. It takes time to melt.

Today I told him to play some simple games on the internet. I hadn´t the time to help both him and V at the same time. So many times now. So many times when V shouts and we all have to help him first, pay him the most attention, get him what he needs before we can satisfy anyone else.

Who´s standing in who´s shadow?

So I sat down with A at last. Remebering the lecture, to pay attention to the Not Disabled One. We played a couple of levels on the Lego-site. And we had some fun going to bed. Hide and seek with V is getting more and more fun, now when he knows that we expect him to look for us...

It was a good lecture. But boy - there´s so many things we´ll have to learn. So many things we hadn´t the slightest idea of before V.

It´s relly a different journey now.

Memories of a chair

Right now V is very much alive. By that I mean that he lives a lot. He´s either running, climbing or jumping. The two first he´s really good at, the third... Let´s just say that he looks like if Stefan Holm tried to jump without knowing that somebody had nailed his feet to the ground.

This is something that you could get very tired of. Chasing your son around, trying to stiop him from falling, stop him from reaching that knife or that expensive christmas decoration, or just stop him from crying when you failed doing the other stops.

Jumpin´ Jack Flash - and a flash from the past

But I remember his rolling chair. And suddenly it all feels good again.

When V was one year old, or close to that, he had a walking chair. Actually it was the old one that A had used and learned the basics of walking from.
But V didn´t learn the basics of walking. He got taller and taller but the need for the walking chair remained. Finally he got to big and the chair was more of a trap than something to get aid from. So we went to the medical technical aid centre for help.

I still remember that truly divided feeling, walking in to the centre.
We were getting help. V had to have a better tool. It was going to get better for all of us.
But at the same time... This was a place for disabled people. I mean really disabled.

Should I expect this life for my son from now on? Hanging around with artifical limbs and wheelchairs? An what if... what if he´d never learned? What if he´d never stod up and walked?

I don´t know why that last sentence never stuck in my mind, but the truth is it didn´t. I´ve always thought that V would eventually learn how to walk. Maybe it´s just the way I see things. Maybe I have a strong ability to deny bad things in my life. I don´t know.

And later V did learn how to walk. And before that he had a great time in his medical walking chair. It allowed him to tag along with the rest of us and to experience the house by himself, as well. That was something really important when building his confidence and his independence.

The chair was, in all it´s hospitaliness, uglyness and sturdyness a fine piece of medical art.

But DAMN - it´s so good to be rid of it!