Friday, April 27, 2012

Day three, doomsday.

The last day of evaluation Sturla goes with just a bit of complaining and his mood is rather sour. He finishes the assessment with the speech therapist although he occasionally lays his head on the table and pretends to snore but he  refuses to work with the other one. So we skip the rest of the testing. They say they can go without it as one test covers some areas of the other one.
We are all exhausted and we are done.

Today the results gave us some idea where he stands among his peers.
He has both expressive and receptive language disorder and that is a huge factor in holding him back.
He no longer has a diagnosis of mental retardation. He has gained somewhere between 25 and 30 points in three years.
The road is still  uphill and we are still in the lower range but...
On nonverbal tests he scores as his peers. Still the charts look like the Swiss alps. Reading and writing skills are now called strenghts, nonverbal tasks as well.
He is still almost two years behind in language.
He is gaining language at least on a normal speed perhaps a tiny bit faster.

This was actually not as bad as I thought it would be. It was not great and I think he can do better but I know where we were and I also know where we are headed.

The doctor who turned the results over to us met us three and a half years ago. I did not believe he could go that far she says.
I make an inward snort...
Did you not... I think... This is the reason I do not share his files with the schools. No one will put a lid on his abilities.
We are not going to allow it.
They will get a rudimentary list of skills and strenghts they will know that he can learn as his peers and that he has a language disorder on top of his autism.
What is Autism anyway. All those children are so different.
The doctor talks about how complicated it will be to meet his needs probably meaning his alp like charts. I do not know, perhaps it is perhaps it is not.

Sturla is a happy go lucky boy when all is well, he has a hard time paying attention he has a hard time talking. He is gadget guy a reader now and an amazing piano player. He is interested in other kids but does not know how to interact and cannot follow their conversation.
He is a sweet natured child, he never hits and seldom screams.He is not difficult himself. It is just hard to keep his attention. He needs a very good structure to focus and stay on track.
All I know is that I am glad this week is over and that we can continue our work and I can focus on teaching him again.

Tuesday, April 24, 2012

Day one and two

Day one.
Shit I am not doing this...damn should we not go? just fuck the system.
We go ( my rebel heart very small) and are met by two young women who barely see their subject of assesment, they are so busy being scientific.
Guess no one told them pshychology is not a real science.(my smartass father told me this once, he was a real one ( scientist I mean) so that is why I know)

Sturla is happy and lively in the beginning but quickly starts yawning and giving silly answears. Sometimes he ignores them sometimes he gets sidetracked in his mind.
Name me something elsa than a car that has wheels. Four he says...ahhh the examiner replies ( she thinks he said bycicle as he can not yet say a rolling r) bicycle!...two he replies.

I am in a absurd play and look around almost thinking there must be a rhinocerous in the room.
Nothing here and I mean nothing, the room is bare and cold and totally uninteresting.
He yawns and it goes on and on and on. I asked if he could have a token system. no that would not be suitable.

Stupid stupid I think.
I am getting seriously pissed.
Sturla is getting seriously bored and starts yawning more and more and doing his ignoring thing.
He is really good at ignoring.
Can we go home now?
Not yet...

We are both getting pissed me more than him. During a short break I loose it a little bit. Just a little bit. I tell the examiner that she needs to establish a connection with the subject and that the subject is not being cooperative.
 You know what. It is all part of the game.

Fuzzy answers about generalisation.
pissedy piss

When we get home I am furious and declare that if hubby wants this test done he will do the rest himself. I am not participationg in this stupid stupidity.
I have great vocabulary when I am mad.

Day two.
I cool off during the night.. a little bit. we make some calls.
One is about the results they are ours and ours only. We let them know how we feel about finishing this... or not finishing this.
Then we get going.
Sturla refuses... he is coaxed. and we go. Back in the exam room he refuses altogether. She tries and I stomp out muttering something about the total absurdity of this all.

He is totally noncompliant and no use continuing.
We go home and make some drama and coffee.
I write a social story make a plan and we are back two hours later. We use token system he can come to us for little treats and breaks. And the examiner makes an effort to interact a bit before they start.

We get a new room a more cozy one.
It goes better.
Still he is kept doing this for more than an hour with two short less than two minutes for breaks.

Please can we go home?

I make her stop before she is finished when he lays his head down and refuses to answer easy questions.
She agrees to continue tomorrow.
So tomorrow it is.
Stupid stupid.

Friday, April 20, 2012

Next week

Evaluation....I dread it.
IQ testing language testing pshychological testing adabtability testing...
whatever you can think of testing.
We have not been doing so great on those tests historically.
Pretty much flunked it all, collecting labels.
Autism.. mental retardation, no language. I am really scared to see it on paper where we are, even though the gains you have made are obvious to everyone.
I think I will keep my fingers in my ears and sing loudly when they start telling me in their calm sympathetic voices where you are and what we might expect.
I have no stomach for reasonable people to outline your future.
I have no intention of listening.

I will keep my head in the sand my mind in the clouds, my feet on the ground and my arms around you.

I regret not quitting that playschool much earlier...

so much has improved eye contact, language, play, joy.
I hate that there are only so many hours in the day.
I hate not being able to do more.
I hate my limitations and tiredness.
I hate my mistakes.

I dread next week and what it brings.
I am probably most afraid that no matter how hard we work it will not be enough.
I can dream of your future and what you will conquer... I am very far away from accepting that limits will define your life.

I am scared that I fail you somehow.

Friday, April 13, 2012

It is nothing

On Fridays the children in the school sing together and we go too listen to our eight and ten year old sons. Every Friday Sturla runs and finds a place somewhere in the group. He sits down and if he knows the text he will sing too. I berate myself for not teaching him all the texts but there are so many other things he has to learn too... so it really has not happened as it should.
Besides this is not his school yet.

I stand there shortly before the singing
having a conversation with Eiki's teacher.
Sturla has found a place to sit.
"Mamma..." I turn and face those green eyes.
" it is nothing.."

But that my sweetness was everything.

Wednesday, April 4, 2012

Is it spring yet...?

Little bits of general knowledge drilled in by DTT sessions.
Tiny seeds of information
trying to make a pattern
books about seasons.. pictures...conversations about the weather.

Then he stands by the window and the snow is gone
the trees still black and dripping wet and the bright green of brave lilies

This unruly head of hair like chicken ass in the wind... we laugh
blond baby hair turning dark
he is getting long and lanky
pyjamas too short
cleft forming in his chin.
getting into mischief..
cutting curtains and drawing on walls.
He has a new way of saying yes... a no nonsense, kind of way.
yup... he says and it sounds short and brisk.
as if he has other better things to do with his time than answer my ongoing questions.
It is a I am busy kind of yup....
a lets turn to other things kind of yup...
a leave me alone kind of yup...
It is a very independent yup.

Is it spring yet?
he asks ...

I relent, and declare... yes... it is spring.
Hoping we have seen the last batch of snow.
Hoping the weather gods will humor me.
See...we need consistency. Teaching the cycles of seasons and weather
....please humor me this time.
And still I know very well it might snow again at least once perhaps twice.
It is only april after all.

But then again the lilies prove it...
and the days are getting long and bright.