Sunday, September 26, 2010

Regrouping in the rain

The rain is pouring.. pouring like it never did when I was a child. Must be global warming.
The leaves glisten in the dusk and it smells outside like a lush foreign place.
It used to blow sideways upwards and downwards and no one used umbrellas because it was not practical, not even possible in the wind.
Umbrellas were foreign and exotic in my mind as a child.
Different times and everything is soaking wet, now the rain pours straight down to the earth.
I am trying to unload my mind and get away. The boys are watching a video I have finished preparing the material for playschool tomorrow.
I feel uneasy.
Perhaps just tired. One more week without a therapist at playschool to go.
The new special ed teacher is busy putting up visual schedules and visual aides. I told her we did not need that, we wanted a different approach and she mentioned ideological differences...
I am tired of being angry.
I need a good nights sleep before I get mad again.

I am giving myself this evening and this rain.

Tomorrow there is work there is therapy and some drawings that wait but that is tomorrow.

Tomorrow there is a new beginning... as always. Tomorrow it will all work out.
drop by drop it will work out.


I promise myself and I promise you... my beautiful green eyed boy

Thursday, September 16, 2010

Vacation out of the blue

A sudden vacation.
Yes... I knew about it I just forgot... or chose to forget.
I am just whining
So his therapist went on a two weeks vacation.
And she is quitting on top of it.
There is no one to keep up the ping pong at playschool I am working and I have an illustration project due in a few weeks. I am drowning and deeply and thoroughly annoyed.
I fetch him as soon as I am done working and I do the drawing at night or not... I hate having to postpone... I want to deliver on time.
My son has a right for certain services and to me those services make the difference between a semblance of normalcy in daily living or a chaotic keep it up and pay the price of exhaustion again.
I am tired of whining...
I just want it to work.

The good part is he started talking more and more just now in a few days it is amazing.
I mumbled what day is it. He answered it is wednesday. I I do not get it. He does not understand the concept of morning and evening and now he tells me it is wednesday. (thursday I mean I keep mixing them up)
Surprised does not cover it.
Any suggestions?

Sunday, September 12, 2010

Some language and some jokes and some trouble

So... we have language... sort of.
We have sentences but we barely have a conversation. I have been waiting for communication for... what is it three years now. I would barely call myself impatient....
something is brewing though.
It is just that for every step he makes I want more more more.
There is not much echolalia any more. There is some spontaneous use of language asking for things, now and then a novel idea turns up now and then and even one or two jokes.

Sturla walks all hunched up, not standing upright and barely able to speak and says I am small, I am small.
Today he went to the toilet with me at the swimming pool. stopped for two seconds over the toilet with his little thing and said I am done peeing without peeing at all. Then he laughed...
those are his ideas of jokes.

Still he is barely conversational. He ignores more than half of everything that is said to him and is often unable to understand the other half.

I had the idea of implementing pronouns into an exercise in the first last program we finished a few months ago.
So... take first this and then that, and then I ask what did you take first and what did you take last.
I had a doll on the table so instead of saying doll I said her in icelandic it sounds like hana which also means rooster actually.
He fell under the table laughing.
OK ok take first doll and then whatever else there is.

Pronouns have been a struggle. Perhaps because language wise he is not ready for them. He knows now the basic words but implementing them is another thing. I mean he is not reversing them he is just not using them at all.

The language disorder is hard and it sucks. He has such a hard time deciphering what people say. All words that sound remotely alike seem to sound the same to him.
receptive language disorder I would guess but we do not weed out the disorders that make all this into autism, do we.... it just goes all into the same ununderstandable melting pot of autism.

He is losing his therapist at play school. I am having regular anxiety attacks because of this and as usual my main strategy in coping is getting angry.

Damn damn. why can we never be secure with anything. Therapists with any experience at all are hard to find.
I want some one who is thrilled by him and loves seeing him succeed. I have such a hard time trusting the playschool and all the package our wonderful well fare system in our social democratic scandinavian world brings to me so generously free of charge.
I am meeting a very nice psychologist and an ABA therapist next week to straighten up our social workout. God ... please make it work out.
This I have to pay out of my own pocket or find some pocket who is willing.

Tuesday, September 7, 2010

The forest and the emotional yoe yoeness of it all

It is about the forest and not the trees.
Trees are good, but it takes a lot of them to make a forest.
Autism is seeing only the individual tree or perhaps just the bark or the moss and getting lost among the leaves.
Sturla loves watching leaves. They mesmerize him. I watch him face the window and he will not answer and his eyes have a glazed look and they are fixed on the leaves as he watches the wind rustle among them.
I will not let him be, I will not let him get lost.
I will make him see the big picture. Or I will die... or something like that....
I am a total drama queen, and not very graceful at all.
I swing between hope and despair almost every day. It is absolutely stupid.
I just cannot help it. I get lost among the leaves. The big picture is just to big for me. I only see it now and then, when Lucy lucid visits.

Then I remember the gains, the strides, and the small steps we have made and all the work well done.
Then I see my child for what he is. A child with incredible patience and an endless will to learn and I know I am lucky.

I often wish I were more graceful and serene and accepting of life. But then ...what would drive me on.
So I will accept the emotional roller coaster ride.

I will keep on being this raving mad mom swallowing my pride, my anger and my sorrow, because that is what it takes being his advocate.
This is not a popularity contest. Nice is not getting me anywhere.

I have this incredibly stunningly beautiful boy. Green eyes and blond hair, perfect skin and with such charm....
He is clever and funny, he loves hugs and kisses.
I truly believe that he can do anything if he sets his mind to it.

We are building a forest. And as with all the emo stuff, therapy is about seeing the forest and not just the trees. Individual exercises make up the big picture but it is the overall skill that is the forest.
I handed Sturla a stack of cards tonight and asked him to teach his brother. They sat down and Sturla asked with a tiny prompt in the beginning, who is this? As he showed his brother the cards. His brother answered.
Every time Eiki answered correctly he got praised (the praise given with out any prompt) but a simple no for wrong answers (no prompts at all). When his brother said something silly, Sturla laughed, but kept on with his game.
It was delightful.
They were playing, enjoying themselves and they did not need me.
The kind of moment when I believe everything is possible and only the sky is the limit.
We will reach for the stars and see how high and far we make it.

He just has to catch a glimpse of the forest. I think.
Just like me.

Tonight I saw the forest and it was absolutely beautiful.