Tuesday, January 31, 2012

The final set back...

Our consultant broke her leg rather badly...
As I really feel sorry for her I feel very sorry for us too.
At the moment I feel this is the final straw.
There will be no more hands on consultation for the next few weeks... I actually do not know for how long.

The hopes I had were built on her.

All the curse words I know in any language I have ever heard go through my head at a rapid speed.

I just want a break from all this stupid stuff and I just want my son to be happy.

Sunday, January 29, 2012

Battles in the playschool

There is a silent battle going on
battle I am very much afraid I will loose...
How does one change peoples perspective and attitudes.

I am not alone though

My wonderful consultant is already coming into the playschool once a week (apart from out meetings, those were not enough as her advice was not being followed)

No use having great advice when it is ignored.

Now she is breathing down their necks..nicely but sternly.
in and out
out and in

We are on our second week of heavy breathing... third one coming up.

We actually have this great system that children with autism have a right for aba therapy in playschool.. 25-30 hours a week.

It is just no use when people are not actually doing aba. When people have no training and have such a hard time generalizing what they are being taught.
We have for the last year provided the playschool with a free course on ABA.

Meaning our consultant.

To no avail
Then there was staff problem now there is ....I do not know what...

There are only a few months until playschool is over and done with...
There will be summer.
There will be regular school and mainstreaming with a one on one aid....
The pit in my stomach grows and grows.

There are certain things I really really would want him to get better at before we start school

Following group orders.
Talking to peers,
Attention and did I say attention

I actually have an endless list but that is another story.

If this does not work out the next few weeks We will pull him out and try building a home program until school starts...

I actually have discussed this with the school districts and the whole organisational package and they agree...

Play school sucks and may well be beyond repair.
The sad thing is that it is not for lack of wanting to do right but the lack of skills and know how.

I am beyond anger now.. my thoughts are getting clearer and more calculated as I attend meetings.
I am not afraid of anyone anymore.

Just the future

We went swimming yesterday as we so often do..
I love swimming when there is snow and sleet..watching the steam rise in the darkness. The burning sensation in my feet when we step into the steaming hot tub after walking on the snow.
The boys ran happily around in the slides and were wonderful at engaging Sturla.
I sat and watched.
I met...a girl from college. Her ten year old son was there he has autism too.. so different from Sturla. He seems very engaged and had great eye contact is talking a lot but still has mental retardation and his movements were awkward. We talked quite bit.. she told me of another girl in our year ... mowing home from Sweden and abandoning a great carreer because of her son with autism. I have heard that the attitude in Denmark is very much let us wait and see apparently in Sweden too..

I feel a hint of my anger... rearing its ugly head... that time consuming... fire spewing dragon... such a waste... those children are worth it all...quality programs... educated therapists... educated choices

So many children.

And such a waste in energy...
There is knowledge out there... there is money...

Not enough people that care enough...
... there I go again...
... there is no cure for being pissed off.

Sunday, January 15, 2012


The weather and me... the rain the sleet the snow and frost and thick chunks of ice everywhere annoy me as much as the constant criticism I seem to be handing out to everyone around me.
It is this dark month I tell myself...
It will get better in a couple of months.
When the sun rises again.

I annoy myself.
I am swearing and feeling giddy and flippant at the same time... I am beyond ...
slightly crazy

Normal is an unclimbable blue mountain in the distance
we go shopping for groceries when hubby returns from work I have been stuck with no car in the weekend no outings and just my pleasant self as adult company.

Normal is the faraway land ... a fairy tale... a fantasy
the golden pot at the end of the rainbow
the soft spot on the dragons belly

Sturla is happy to get out and he is running around in the store getting lost on purpose trying to find some good stuff to sneak in the basket....yet ...yelling.... mom where are you?
I yell back and we meet in the middle of a field of yellow cheerios packages.

He wants to watch the christmas calender on tv... christmas is over I tell him for the hundreth time.... Perhaps dad can act it for you. Or the clerk I point to a young man stuffing groceries in a bag. The young man smiles and looks away... too shy to answer

I am the shop keeper he declares as he sits behind one of the checkouts... I pretend to shop...

Normal is another land

din of cats paws
woman's beard
fish breath
bird spit
...and what else did the dwarfs use for making this unbreakable rope...

I tie myself freely and willingly to this fantasy
I knowingly will not have it another way
It is my way

....and often lonely on this highway....
the only way I can live with...on the way to that unreachable blue mountain.

We have been working non stop the week and the weekend and I am tired and silly.

Christmas break is over.
There is work tomorrow.
Playschool and the battle for team work...
I better check my tongue and put on a pleasant smile in happy land.

And I watch you my sweet child and you are worth it all and much more.
Worth your weight in gold
Worth your weight in tears
worth my worries...
My budding pianist
My budding conversation partner
My budding bunch of potential

It is just a tiny leap of faith.
I can do it
After all I can believe in ghosts and dreams and elves so how can I not believe in you.

Sunday, January 1, 2012