Saturday, May 22, 2010

Environmental factors and then on lighter notes

Anyone worried yet?

A few lovely moments on a laid back saturday.
My son did notice that moms do not have wee wees. I find this so delightfully age appropriate.
Totally fitting for our what is missing program.

Playing jingle bells on a rusty squeeky wheel, just blew my mind. He sings all the time Bob the builder is an all time favourite and l´homme arme by Karl Jenkins.

Funny kid
Great taste

Thursday, May 20, 2010

Accepting the roller coaster ride.

No one said it would be easy. It is not.
No one ever said they would fix it. They can not.
No one promised anything.
Everyone is wary of the word.
As if hope does not belong in the autism world.

As I know before there are just two ways, keep going or give up. The latter is not an option.
So as I climb back on my horse to continue the ride and I promise myself again to laugh more and enjoy my life.
Accept the uncertainty of the future.
The future has never been fixed anyway.
So whats the diff.

I continue where I left off doing what has to be done the right amount of hours in therapy the chores and raising my kids. And if anything is not done well enough it has to be made better. Just like that.
Oh so simple.
Just plod along that road....

As I sort through all those emotions it gives me strength that my feelings are not mine alone they are shared by all the others dealing with the same.
Hope is our fuel.

Hope, reinforces my efforts.
Every progress we make, every little bit my son learns is a drop in my fuel tank. I see progress, sometimes even big strides.
I am greedy and tear at my hair and ask are those strides big enough?
Is progress fast enough? And fast enough for what?
Perhaps it is.
Perhaps not.

It takes a long time to raise a child.

As important as it is to look at the hard facts and the numbers and percentages it is equally important to remember, there is always room for improvement for progress there is a way...

Doctors give little hope and there are endless argument all over the internet. Cure recovery, improvements it is only semantics.

Yes it is a rough ride.
No one lied.

I will soon have a PHD in flexibility a MA in swaying and bending and a doctorate in multitasking.
It is OK.
It is worth it.

Sunday, May 16, 2010

Getting back on that horse again and again.... and oops I fell of again

It happens regularly. I burn out. I loose my temper and I get stuck on details and forget the big picture.
Is there a remedy for this?
I loose myself in a stupid temper tantrum fit for a three year old.
There is nothing to do but get a grip and get back on track again. Forgive myself, undo the damage and start over.
Tomorrow is another day and the afternoon is inviting.
Breathing time.
Personal space.
Funny.. whenever someone asks me if I am taking care of myself and having some me time I get an urge to punch them in the face.
I know, it is not a nice urge.
It is not a nice thought.
The worst thing is they are right. That alone is of course a good reason to punch people.
It does not benefit my son or let alone the rest of the family if I am removed in a strait jacket.
So here I am breathing. I am not working on anything for the rest of the day and I am off to the blue lagoon.
Oh well.. we are all going.
The whole happy bunch mom, dad and five kids. We will leave the cat though

Not a care in the world...
We have got coupons...

That smoke in the distance is me cooling off.

Thursday, May 13, 2010

Imaginary play.

Yesterday Sturla sought me out bringing a little kit of cups and dishes.
Mamma. Do you want coffee.
Yes please.
Then he laid out dishes and cups and prepared our little party.
I was so astounded and happy wanting to share the news so I called my daughter who was down stairs.
Look , look what he is doing.
As soon as I called her name he stood up from his game and ran to the stairs.
Sola, Sola do you want coffee?
Then he laid down a cup for her and a dish by the side.
Can we have cake? we asked and he opened a can of dough and gave each one of us a piece. Spooning the stuff into our mouths and laughing at his sisters face when she tasted dough.
Oh this is disgusting, tasting it himself, making a face and laughing.
The sequence of the game is learned. The use of dough and laying out the table.
But seeking us out and adding his sister to the game is all his own idea.
The initiative.
The joy in playing.
This moment is to remember.

Wednesday, May 12, 2010

Ramblings about creativity and plain old skills

The first time I heard of applied behavior analysis I felt a kind of repulsion. Mostly by the word behavior. The idea that behavior had to be modified. My kid is not behavior, he has spirit and emotions. He should be who he is. Whatever that is.
It took a while to overcome my first impression and figure out why I had I this feeling.
First I realized I had some vague ideas floating in my head about the human spirit and free happy children figuring things out by themselves, while they picked flowers and speculated on the cosmos. Playing and learning as well as creativity was in my mind all woven together in some fuzzy romantic idealism. Put that together with the the ideological child and hen try to fit it around an autistic child.
I does not add up.
I will give that to my son, that he has pushed the boundaries of my comfort zone.
Physically and ideologically.
So we are not all happy hippie children.
Some of us actually need structure to get the hang of living.
I could not let him be who he was. He was not happy and he definitely did not fit my profile of the free joyous spirit child. He was uninterested in most things, aloof and plainly had no idea of how and when he ought to do something, even things he actually liked. He seemed agitated and afraid.
When we went to the country side the car had always to be in his sight.
He did not like new swimming pools.
When winter came he would not change his coat or wear warmer shoes.
He mostly ate bread and bananas.
I could go on and on.
This just did not fit my idea of a happy life. I compensated and had to be very creative to figure out how to keep him calm and at the same time parent my other kids who wanted to do stuff and figure out hings for themselves.
I put my idealism aside and immersed myself in the behavior stuff. What I found out and should have learned long ago in my art studies is that creativity and flexibility has a lot do do with skills.
It is not seldom that I have had to put an excellent idea aside because I have not had the necessary skills to execute my idea. I am a lousy carpenter. I do not know how to work iron and I am barely adequate at making casts.
So my ideas tend to be linked with what I know how to do. I make collage and drawing and paintings I never photoshop because I am bad with computers. I put a lid on my creativity all by myself and refrain for pushing the boundaries of my comfort zone both because I am scared of doing badly and because i have no idea of how to do it, besides getting ideas in an area where you lack the necessary skills is quite impossible.
The know how leads your mind forward.
I taught Sturla to draw and in the process I saw that the reason his drawing were so immature was that he had not figured out that forms could be put together to make a new forms or figures. First we did only imitation.
Do this, do that.
follow dots. et cetere. Absolutely boring, and I needed to get him through the basics with treats.
Then we combine forms and that is more fun but sill imitation and do this and do that. The day I got the aha moment from him is a day to remember. The day he figured out that his lines and forms could make something from his own mind. The day he made a drawing that was not an imitation from me but an idea from himself. A car like he had learned to draw but with a steering wheel all his own idea and a figure in the car, his dad driving.
That is when he was capable of being creative. He was no longer stuck with his little stick figure made from only two dots and three lines.
When I was in school there was this strong postmodernist trend that art was all about ideas and there should be no boundaries between the departments and skills were out of fashion, the free flowing mind should, well flow freely.
I say that if the mind is a river. Skills are the river bed.
And as in nature one affects the other.

Tuesday, May 11, 2010

Autism is everywhere

On saturday there was a festival at my sons school. First the kids tidy their surroundings and then they have a party. Nice, only we skipped the cleaning part and just had a party. Even nicer. Sturla and I had hours to catch up on, no time to tidy up in the school yard.
We went for the hot dogs and jumping.
He saw a little boy and pushed him around, I missed the actual pushing but became aware that somthing was not right as the father was upset and shocked by this unruly child. Now that Sturla has increased interest in other kids we get into more conflicts.
I made excuses for my son and felt compelled to explain the reason for his inappropriate behaviour. The father looked at me astounded and said. My son has autism too.
His son was diagnosed a week ago.
Monday there was a little celebration in my eight year old sons class. One of the mothers sat beside me and it turns out she works with autistic children.
Her daughter has low muscle tone and some delays and kind of obsessive behaviours she will be diagnosed later this week.
Everywhere I turn something turns up.
I went for a job interview. We knew each other form before my new boss and I so we chatted far and wide. Her son has ADHD, so does my eldest. ADHD and autism are related disorders.
I am getting paranoid.
Any one heard of grashopper effect.
The thing is, apparently all the chemicals in the world slowly end up near the ice caps at the poles. They move, rise with heat and travel and then settle down again in colder atmospheres.
I am scaring myself witless.
33 children in Reykjavík alone have been diagnosed with autism since january.
Gosh, we must be getting terribly good at this diagnosing business.
I thought a lot about this few months ago and then decided to let it go it is far to time consuming, and burns up to much energy to worry about the environment in this fashion.
But its creeps back.
We can have a whole new twist on the mercury autism theory with grasshopper effect, we do not even have to say the word vaccines.
I find it really hard to let go thinking about this.

Wednesday, May 5, 2010

The knight

in the high castle

branding his sword

at a concert

wearing the superman outfit


He lost focus when he saw me with the camera. He had been doing so fine and his brothers were just perfect with him. It is late in the day and attention span shortens as the hours increase. I try to keep the distance between the children relatively short , otherwise both ball and attention can go astray. And lol it did.

Sweet spring

Finally, the weather is changing and so with it, my mood. I adore those rainy spring days. I have not worn my red polka dot raincoat in months and now nothing else will do.
Sturla scrutinizes my attire and approves. He touches my lips and is happy that I have put on lipstick. Then he brings me a pair of earrings.
He has an eye for detail.
He himself puts a crown on his head and with a terrifying sword decorated with skulls, he is ready for playschool.
He is a knight and the king.
I am the polka dot queen.
The trees are dripping wet decorated with silvery raindrops.
The frost is gone and I can smell the earth.
We are ready for anything.

Tuesday, May 4, 2010

minding the future

I realise more and more how my child becomes a measuring stick to almost everything. I compare him to others, autistic children and neurotypical and think how he is doing in comparison as if I can measure his progress and future.
I look for things we are doing well in and what needs more.
It is a calculation game.
I play an oracle.
Somewhere I hope to find the answer of how he will be in the far future. The one that is so far away that my live will be almost over, at least I will be legally old when that future arrives.
I do not want him to rely on strangers.
Four siblings.
Let us hope it will never come to that.

There are six children with autism in the little school my six and seven year old attend. I stubbornly hang on to that small private school even though we really can not afford it because I know the autistic children there are being taken care of at least it is so at present, that may change with staff.
They are getting an education and there is an active effort in improving social skills. Those kids are all what you would call high functioning.
Then I calculate, will he be like that?

Can he...
Will he...

When we drive to school I sometimes see a man and a boy standing and watching the traffick. The boy makes some repetitive movements that I have come to recognize. The man holds him tight and the boy stares mesmerized at the traffick.

I think of my friend and her son who is now nine and how he asked his mother at seven. Why am I different? And she told him and he cried.
Self awareness and understanding of oneself.
Still he can not ride his bike in traffick.

And I measure it on my scales and wonder, what and how.....

Staying in the now.
Reeling in my mind.

I pour all that effort into the present in trying to improve the future. The quality of life is still in the present and it will always be right there.

Saturday, May 1, 2010

Put the crocodile in the toilet.

What I meant was put the crocodile in the (bathroom). I was doing a memory practice using his new vocabulary with places and rooms.
Then we wait and do something else.
Where did you put the crocodile?
OH well
Into the toilet of course.
Wet dirty crocodile.
Apparently New york is not the only place on earth they flush down crocodiles it happens in little Iceland as well.
We are so utterly cosmopolitan.