Monday, February 13, 2012

IEP..or something somehow.. whatever (tag at last)

The tag from Marsupial mama... here it comes at last for those interested in how things might work in another land and somewhere else...

Here things work somewhat differently..
Not surprisingly for a nation of 300 thousand.
We have one center that serves the whole country... one drowning center in a sea of autism.
The system is very cut and square... we pay a huge sum in taxes so pressure is high... things are supposed to work...
The system believes it works. And sometimes it does...people have a right to the same kind of services regardless of their income... that is how the ideal is.
This is scandinavian wellfare....
....and to some extent it works.

Free therapy and even monthly support for education materials and such if needed.

Could work!
Should work!

And the system loves itself and believes in itself and we need a playschool to get support...and every child is entitled to a place in a public play school.
Private enterprize when it comes to education is not the thing... that is social democracy. We love equality.
Do not get me wrong I like that there is a good wellfare system and I will not complain about taxes...

It just has to be put to good efficient use.
That is where i will complain.

And then there are always random factors, human errors and the general chaos of life.
And special needs are never the priority in any society.

Nothing is in writing.
The playschools rule themselves within regulations.
The Center for disabilities do consultations not hands on steering.

This is how it happened to us...
I went to as 18 months check up... somewhat late as I was not really concerned there was just this tiny itch somewhere that I could not get rid of and a kid should get his checks but on the whole I was not too concerned about my baby... you see there is nothing wrong with my kids ever... ever.
I felt I kind of knew my stuff... five kids gives you some weight in the baby business.

I had a good doctor ...a mom to four kids and I listened to her... in the end
She wanted him checked.
I said we will see... that is how stupid I was...
and the itch grew and it grew.
My aunt has a good friend... she works at this center... my aunt asked if I wanted to meet with her.
I did.
The itch was getting bad.
He was diagnosed on the spot.
He was two and a half years old. I did not feel anything.
Perhaps I did not believe her.

This is when I drowned myself on the Internet reading about autism.

We went back to that doctor.
Sturla was getting a placement in playschool and this is where the preliminary diagnosis took place.
I wanted everything explained to me... every thing he missed and why and how and how he scored and how the test were done and you name it... I could not stop asking and reasking and pushing for better explanations.

No one told me what we were supposed to do.
We were put on a waiting list at the center.... it took six months and he spent his three years old birthday at the center.
While we waited I found out about some things. Slowly because no one pointed us in the right direction and the Internet does not necessarily give you the best info when you google autism.

The warfare in autism treatments.
That our district had denied aba to every child and parent who had asked for it, even though the center works even handedly with aba and teacch according to parents wishes.
There is no consensus on treatments here...

Beaurocracy.
Hail democrazy.
Anything goes

So the fight began.
Turned out someone before us had sued.
We got aba.
No one had experience with aba in the district....
We got a wonderful consultant from the center. Still she would only be around for some standard consultation.

I read all I could and bought books and read about what the components of a good aba program would be... I wanted to know everything.

Early intervention consisted of no written plan and a one on one aid that had back problems and was just as often sick as able to work. When we recieved aba he had two therapists but if someone was sick or if the play school was understaffed he missed his therapy...
hours were low continually.
They did not understand the programs or how to implement them.I
I tried complaining
I tried explaining.
After all they did not spend every night reading about autism.
After all it was not their child that needed help.

The playschool complained...told me to my face I was difficult.
There was just something about me... she said....and then her voice trailed off
We quit.
It was just to hard.
I just did not get it... why would not the whole world hold its breath and help my child. I still don´t
We hired a young girl as a therapist and she became his new therapist at a new playschool.
Things worked somewhat for about a year.
T was inexperienced and she was not good at teaching social skills and the playschool itself could not handle anything. She argued with the headmistress.... I had them complaining.... one in each ear.
yackedy yack

Things sucked more and more...
suckedy suck

We got a new consultant from the center...I missed the other one.
I hired my own consultant mainly because I thought we needed more intense meetings twice a month or just when we needed assistance, we are still working together.

T quit.
The playschool refused to work with our consultant.
We quit,
the center agreed...things were not working.
Playschool number three looked good on the surface... but was probably the worst mistake we ever made.
We are still banging our heads on that rock.
And here I am feeling quite stupid and still pissed.
Trying to be a one size fits all therapist... mother and a part of the working force.
I we quit this play school and do not start with yet another we have no choice but to pay for therapy ourselves or do the therapy ourselves. The former not being an option.

The system does not consider failure... it does not consider that parents may object to lousy therapy and there is no such thing here as a board certified behaviour analyst.

I just know one thing and that is ...
I will never quit.
Never ever.

And slowly I understand better and better how he should be taught and how to handle the system.
It is just too slow.
Ideas change slowly.

Children with autism have no time for slowness on the other hand and that is the hard part.

Sunday, February 5, 2012

The rock and the hard place.

If we pull out of play school we loose all support.
We will not be funded for a home program.
Wednesday we get the consultants from the center (there is one center that serves the whole country, this center has several divisions and handles all disabilities)for a meeting and a week later a follow up meeting.
I have been on the phone a lot last week.
Do I think anything will change.
Not really.
I have found programs after programs that have not been generalized into the playschool.
The hard work for both my son and me on personal pronouns seeping through the cracks because there is no follow up.
Ask versus tell finished and fluent in end of october not worked on in playschool.
and more...nothing works there.
The same old lame reinforcers used again and again until he is sick of it all.
There is no connection between him and his teachers.
He shuts himself down.. does not answer does not look.
Can work like this be fixed..
We are trying.
I will continue to bang my head on this wall until the end of february. Then we look at the status.. Do I see dedication blooming or just a scratched surface.
Is he learning?
Is he happy?

The sad thing is seeing him give up... this social thing is so hard ..
Then I give up on the system and we stay at home until school starts.
Who knows how he will handle that.

I know there is no such thing as giving up...but will never again trust anyone for your education. But at the same time I know that the world has to become your playground and you have to respond to it so we have to find our way again...
We just have too...