Sunday, October 21, 2012

Seven years old yesterday.

We wake up together in the family bed after a late night watching Pirates of the Caribbean.
"It is saturday " he says..." we saw the pirate movie yesterday evening".
Happy birthday I say smiling. How old are you today.
"I am seven"
No drilling this time to remember and understand how age works, he just knows. The use of time concepts comes easily and fluently into his thoughts. Pronoun confusion is history.
It was a bit scary was it not? I ask.
"Yup" it was a bit he admits.
Where is my teddy he asks me and then finds it, and a book. He takes care to situate the toy so it will see the book and then reads to the teddy. Now he is hungry, he says when he is finished and we go downstairs to feed our children.
We spent months on the theory of mind programs last winter and there it is...in use.

His patience wore thin as the film went on, it is too long but he refused to go bed and I let him stay up with his brothers, it was their sisters turn to pick a film.
Pizza and a film for a friday night. And then I took him to my bed so he would fall a sleep quickly and not be disturbed by his older brothers still stuck in the action of fighting pirates...

We get up and start preparing for the family party.
Are you baking a cake for my party? He asks.
He is asking a lot more than he did before the summer and we are pretty close to our goal of at least twenty questions a day. How questions kicked in last august and now I hear one every day.
Why and when need a bit more work I guess.

He is now I would say somewhat conversational at least with adults and with his brothers as they give him the necessary help to sustain the flow of a conversation.
He loses the thread with his class mates though.
He picks a classmate and a question to ask everyday in school. Last week he asked if B had a pet. B told him yes and the day after B brought a picture of his pet to school to show Sturla.
We are trying to build some connections. One question a day may not be much but it makes him seen and acknowledged.
Nothing is built in one day.
Patience.

His teacher is sweet and willing to accommodate and his aid his wonderful. Our consultant attends the meetings with the school and she is listened too.
So far so good.
He sits with the class the whole day and rarely needs a break. He is learning the same as they and refuses to be taken out of class when they are doing something he already knows like reading. The class is on beginners level and he is reading like he was in second grade. He reads fast and fluent...but he wants to do the same as they do, so he stays.
The school uses incidental teaching. There is knowledge of both aba and teacch. But they do not  use either method in particular. Accommodating each student as they see fit... I go with it.
I will not rock this boat.
The best thing is, Sturla loves going. The first time in three years I do not feel guilty leaving him.
it is a good feeling and makes our lives so much easier.
The goals for this winter include listening to group instructions and to keep on working on his assignments. He drifts off if left to his own devices and needs to learn to stay on task.
His mind wandering to who knows where...like when he sees the trees and leaves moving, he is lost in the wind and the light and the movement.

The piano goes as well as always we still have that wonderful teacher. He will be finishing that first suzuki book before Christmas, music is just amazingly effortless.

He wants a Parrot for his birthay.
This he decided last winter. When his brothers rescued a stray parrot...which later was returned to its owner, a little six year old boy that cried from joy when he saw his beloved bird.
We get him a parrot.
...he picks one, a bright pale yellow bird just like the one that we found and he names him Mikki.
...like the parrot I told him about that I had when I was little.
He remembers more than I know and seems to retain more knowledge than I am aware of. I see more and more of examples of it.

He is thrilled when the doorbell starts ringing and the guests arrive. He is happy about all the presents and shows interest in everything.
Happy birthday the guests say and he replies happy birthday....it is enough to say thank you I whisper.
But he is to excited, to remember.
He loves an angry birds t-shirt with lights on and fart balloon.

He does better with each birthday and I have to remember how time is after all on my side. I have been fighting time so long trying to teach as much as possible in the shortest time possible stressing myself endlessly and now I see it flower, as he makes it his own.
I love to see him unfold...I like what I see.

...and so it goes on.
 It is a marathon and I am catching my breath this weekend. We are going swimming and I have decided not to mind that we are low on hours because we are also entering a new stage where a shift is needed.
I need to grasp how to go about it.


Friday, October 12, 2012

Getting my head out of the sand.

There is too much going on apart from the daily tasks my mind is all over the place and i have no idea where to begin.
There was this facebook group someone pointed out to me when the family had that crasy meltdown over the last failing playschool.
An energetic mother with two kids on the spectrum started this group in order to prepare for a group pushing for changes.
I of course stuck my head in there....lots of wonderful parents with stories of a sucky failing system.
We met...established a grpup party whatever this would should be called.
Since then two press interviews...one with other two parents and our picture on the front...it does not take much to get anxious me going and I admit I hardly slept for a week after that one.
I feel I cannot back down that would be failing what is right. But I am not sure I have the stomach for this...I am so afraid of  say something wrong, not to have all the facts straight and to offend someone. The darling husband encourages me and says I will get used to it. But I am not sure.
I am stuck...
I want to stick my head in the sand but then I would not want too look at myself again....
... so I am stuck.
We will meet again tomorrow and decide the next steps...one will definitely be calling the attention of the media. We have to call for a debate with psychologists teachers special education and all the others.
There is now a policy of full inclusion in the schools. Now many and perhaps most of us long for our child to be fully included and to be able to function in a "normal" school but that can not happen unless the schools accommodate and know how to accommodate. The University that educates our teachers has not one single course on what can go wrong in a childs development...nada about autism adhd and all sorts of other labels and diagnosis.The have no knowledge and nothing has been changed in the education system in order to welcome and accommodate those students that come from special education schools and are now mainstreamed. Unless you have an IQ above 50 you are mainstreamed. Exceptions been made in rare cases.
Mainstreaming is a great thing when it works..and oh boy how I want this winter to work out for my little one.
But it has to be done well. People have to know what they are doing. I know there is a lot of knowledge out there about how to make mainstreaming work. The thing is without the right resources nothing works at all and mainstreaming lots of special need children least of all.
The first step seems to have been closing down special needs schools...not building resources in the main education system. Not educating the education system.
The irony is that a few years ago teachers studied for three years to be able to teach children now it is five years....they refused to add education about special needs.
There are waiting lists everywhere for every step.
Our story is that even though my son had a preliminary diagnosis at two and a half years of age he had official ABA at 3.8 months old.
One and a half years was lost. We started on the beginners level of almost everything with therapists starting on zero ( I call a five days course on ABA zero)
Catching them early is a joke in this system.
There is a weird consensus going on that parents should not be pointed towards scientifically proven methods, but are given a choice.
...a diagnosis and a choice of action...It is a horrible choice.... a scary and unfair choice.
The responsibility of the right choice lies with the parent. Do we all have the means to read science studies to catch upon the best autism treatment while we come to terms with the emotional turmoil of our childrens diagnosis.
It is a sick play.
The participants represent doctors and educators psychologists and special education teachers who all fend their positions knowledge and power and try at the same time not to offend each other because it is nicer as they all have to drink their  coffee in the same cafeteria.
We are a very small community her in Iceland.
And this choice between methods is somewhat real as far as play schools go in theory at least but when you enter elementary school....you just take what you get and if you are lucky you get some nice people to work with your kid....any notions of ABA....better get that out of your head.
...it only leads to trouble.
People post questions like.
Does your kid have an individual education plan?
Do you get to see you kids IEP(equivalent)?
I might be mad enough to get over my stomach...anxiety and longing to keep my head in the sand.
Our story is nothing compared to the ones I see in our group and compared with the horrors parents of older children have gone through.
I write this to clear my thoughts and to see if I am mad enough and I think I am.