Friday, April 30, 2010

Progress

"Children who are treated as if they are uneducable almost invariably become uneducable".- Kenneth B. Clark

I picked this from a site I ran across and was impressed by. I have no idea who Kenneth B clark is. It does not make this statement any less true.

Expect
Believe
Find a way
How is that for my new found zealotism.

Thursday, April 29, 2010

Winning the ABA zealottery

Am I turning into a zealot? And if so, do I mind?

I am having a bit of a meltdown, a very private one in my living room, knowing very well that when it comes to sticking up for my son at meetings I have to bee absoluteley clear headed. So I do my angry stuff at home (usually). I doubt it is healthy.
So it goes,
I am not a trained ABA therapist but I am trying to learn how to become one. My dear T has a masters degree in psychology and her main interest is ABA but she has not taught children before. So we are both at a starting point in many ways. We are both working hard but I wonder. Do we really need to work that hard. Could things not be made a little easier.
The problem is we need better directions in our program, we meet every six weeks or two months with a very clever lady, those meetings last two hours and are crammed with info but this is not enough. In between the district we live in offers meetings with a director of the program that is not really qualified. She swings both ways, so to speak with ABA and TEAACH. Sturla ABA program is the only ABA program she consults on and also the first one she ever has done any consulting in. I feel we are not getting what we need.

This is working because I stay at home and pour myself into this, putting everything else on hold. But I need to start working. The economic foundation in this household is cracking. And my peace of mind as well.
Help! A midlife crisis in the autism crisis.
Where is my tiny budding career.
It got drowned in autism.

I want some ambition into his program for crying out loud.
I want a more focused approach. I want a better plan. In many ways am perfectly aware that I am asking for a lot but a lot is always better. The one who said "less is more" is an idiot, every one knows less is just bore, never more. ( this is who I am becoming) Minimalism has never been my thing.
How many wants were in there?
As we tread hesitatingly into the social skills area I feel more at loss. I need someone to hold my hand.
Please
Someone I respect and trust.
I know whom I want.
I just have to convince the district to hire her and convince her that she wants to work with us to.
How do I manipulate this?
Can I say?
Hey, I feel you are not qualified or at least you are far to busy to take care of what nees to be taken care of. I want someone else.
How is that for diplomacy?
Two ways are accepted as treatment options but only one of them is accepted by me ( and lets add for the fun of it, in a bit overbearing way, by science) and in fighting for one thing versus another I feel myself getting more and more tunnel visioned.
That is the price I pay.

I have the quantity, now I want better quality.

The great day of complaints.
Feel free to complain.
Feel free to nag.
Feel free to demand.

I cannot stand this stillness this something is good enough quietness when I know there is a know how out there.

I rant.
I complain.
And I pledge to continue to do so until I feel secure in the knowledge that everything is in it its place as it should be

Monday, April 26, 2010

Curriculum update.

Increasing vocabulary has been going fast and I enjoy seeing the way naming objects gives him a sense of awareness. We have been naming rooms and places and costumes and occupation. This seems to give a new awareness of his surroundings. New links to the outside world In the last month we have added around sixty words to his understanding. Not all have become a part of his every day language already but some have been an instant hit.

What is missing. We had to a little backslide as we had been going to fast. We have to be careful of keeping the enthusiasm going. Interesting things are more easily noticed than some stuffy stuff. Obviously If the ice cream is missing it might mean that you do not get any!. Humor works well as well.

Counting is going well. He has already learned to identify numbers up to twenty. And is now counting objects.

Memory. Well, we are having trouble structuring this program but today I had a meeting with T and we made a few mutual decisions that I hop will send us flying.
We are going to make up interesting events throughout the day and ask first immedietly and then slowly lengthen the time until we ask again.It is not that he does not remember, he does not undrestand our expectations. Understanding of locations and naming is a prerequisite.

We reintroduced the sequence program not for sequencing but for telling and using the language he needs the practice in uttering longer sentences and get the feel of grammar.

Personal pronouns are at last somewhat working but the poor child is learning Icelandic and has to learn four different conjugations of mine versus yours plus three genders and the plural(well we will save the plural). To top it it all rhymes and he has a heck of a time getting the difference.

Imaginary playing. It is no trouble just having fun and playing bur here I also have a hard time making it all into steps and finding the beginning and building up the skill. Simple imitation is not difficult so I guess the next step will be to combine two sequences. I am not putting much emphasize on the story yet. We need to keep the groundwork simple and secure before actively going to the more fun stuff. He is not yet capable of following a story with someone else. Later, later.

Conversational skills. We are working on yes and no.
Is your name shirt? NO
Is your name Sturla? Yes
Is it a car? NO
Is it a cat? Yes
And then attributes and so on. This is fun and gives many opportunities for silliness and laughter.
This has been a good program and he needed this practise. It increases attentiveness to spoken language and awareness that it actually matters, what you say. Questions like. Do you want to eat dirt? Or shall I hit you? can have consequences. He loves the outrageosness of it all.

I should add.
Learn how to come here and stay put.
Tell me where you are going.
Do not throw things. (We have a broken glass in the toilet, one broken window and thankfully the TV withstood the last assault. AArrgh, how do I stop this very impulsive right in the middle of the most chaotic moment of moments behaviour. Throwing things, heavy hard objects. outside the window down the stairs et cetere. AAAArrgh

Otherwise we are doing good.

Friday, April 23, 2010

Runaway robot

Sturla walked early. He had just turned eleven months when he was up and about. Just like his older sister, there was no stopping him now, he did not like sitting in the stroller but insisted on pushing it himself screaming when it got stuck. His tantrums at that time could last an hour. I used to be an easy going sort ( or so I like to believe) so I brushed this off and laughed, dealing with each individual tantrum as if it was just that, one tantrum.
14 months old on christmas eve my daughter left the door open for a few minutes as she wanted to hear the church bells. I was busy in the kitchen preparing the festive meal as something tugged on my mind, perhaps the gust of wind from the door or just a slight unease. I ran outside and to the street and there he was trotting on and on into the distance wearing his fine checkered shirt german lederhosen and white socks. It was freezing cold.
That winter I kept a close eye on him and it was easy little kids walk slow in the snow. Then came summer and running away became a daily activity. He just walked on and on, he did not mind when he was turned around as long as he was walking. He could walk endless distances. I was a nervous wreck.
Marathon baby.
The runaway.
He is still at it and It still freaks me out. There is another summer coming and I am scared and nervous that perhaps this time I will let down my guard. It is physically impossible to keep a constant eye on him.
I have to brush up on the command stop and come here. I need robotic obedience on that one. I am already getting a taste of the next few months. I want to be able to watch from a distance to give him a little pace now and then to do his own thing and get ideas. (hmm not all to fantastic ideas though)

In earlier summers.
I have lost him in the swimming pool.
I have watched him run naked down the street pushing a yellow truck in front of him his butt up in the air. (a very picturesque sight).
I have had him returned by friendly neighbors and people passing by as I yell his name and run around frantically searching.
Does this naked baby belong to you? HUh yes thank you.
It is our luck that there is little traffic in our neighborhood.
We have been lucky to have family and friends to lend us spare eyes and watch him a few moments.
It is quite hard never to let your guard down and in many ways this is what I find hardest.
The relentless watching.
For his physical safety.
For his development.
There is a new summer looming on the horizon. It means that time has passed. It means that he will have to be watched harder.
It all blends together into a very hard knot.
To be on top of it and to know what the next step is.
Not to loose him.
Stop. Come here. Will be practised until he obeys like a doll on a string. I mean it literally. This would be called behavioral control, I guess.
And then tell me where you are going. Ask for permission.
Starting today. I have gotten far to lenient in he wintertime.
I want a robot.
I want breathing space.
Damn it, I want to close my eyes every now and then and enjoy the few hours of sunshine Iceland offers.
I marvel how lucky we have been, that he has not come to any harm and i can not finish the thought, what could.....
So little robot stop, go, come.
Be safe.

Tuesday, April 20, 2010

Eyjafjallajökull

http://www.boston.com/bigpicture/2010/04/more_from_eyjafjallajokull.html
I just can not help myself those pictures are to powerful.
I doubt we go to the south coast for camping this summer though.

Saturday, April 17, 2010

I am fine.

Sturla has been taught to answer this question. How are you? with this standard answer. I am fine.
He has found a new use for that phrase. I know it is a kind of scripting, but who cares it is just too darn cute.
He comes to me every now and then. Looks at me and states, I am fine. (the Icelandic equivalent would be all is fine with me or I have only good news).
This morning I got this sweet firm hug and then he turned my face and told me looking straight into my eyes.

I am fine.

As if I needed reassurance.
To fill up the silence.
To engage.
Reminding me that all is good.

Friday, April 16, 2010

eruption again and perhaps again and again

http://www.boston.com/bigpicture/2010/04/icelands_disruptive_volcano.html

Nothing to do with autism though but Sturla has lernt the word eruption

Thursday, April 15, 2010

The power of theory of mind in the normal population is grossly over estimated

T has been sick for the last three days. I decided to keep Sturla at home for several reasons. To keep up the hours and to keep his program going and because T is the only one at playschool that has experience and any inkling of what ABA is.
I need to keep up the work going on in ordinary weekdays, as I struggle to keep the weekends as carefree as possible.
Family hours are precious. Sturla needs that time as well, and his siblings certainly do. So that is how it is going to be in my world.

When I come to playschool this morning after five days and 26 hours of one on one with Sturla. I meet T and the headmistress in what I realise is a slightly heated debate, T being hilariously undiplomatic and I just love her for it.
I step into the conversation as they are talking about us. The topic is that the headmistress feels that Sturla should come to playschool when T is not there. She says they have plenty of qualified people.
So how to differ in a diplomatic way?
I tell her how pleased I was that T´s supervisor called yesterday and told us that we are welcome and that she would take care of him. (Sturla was actually a bit sick so I did not have to deny flat out, Thankfully T is a sturdy one and is seldom ill).
Then I mentioned the fact that no one at the playschool has the attended the seminar where ABA basics are taught. I suggested that would be the first step and told here again that I appreciated her concerns.
She admitted in the end reluctantly that I was right and said they would check out the seminar the next time it would be held.(Next fall probably)
She said that Sturla was doing so well, I need not be so worried about him he would do fine she had seen much more severely autistic children.
She then told me of a friend of hers that had a boy with downs syndrome and how that lady had decided to keep on with her life and normality she did not do much extra therapye and only accepted the normal safety net society offered.( she was telling me to chill and be happy).
Whew, what to do with this piece of information and advice.
She is a nice lady.
She wants to do the right thing.
She took us in when my diplomatic abilities blew the situation in our last play school to pieces.
I told her that we had only been doing intensive ABA for nine months now and that last summer Sturla could not request for things. I should have but did not mention that he could not talk at all, he could not play with toys properly, he could not draw, he could not crack a joke.
She does not get it.
She does not understand autism. I can not blame her for that I am not sure I understand it myself. I get my son though. I know he will be all right in the sense that I will keep him safe, I will love him all his life, I will keep on fighting for his rights and for his well being as much as I am able to. But I can not tell if he will be able to make his own living or even live independently.

So what to say when someone expresses concern for your well being and suggests that you embrace normalcy and relax, have a cup of coffee and a chat.
I said I was thrilled T was back and had every intention of getting my cup of coffee. I can relax when my kid gets what he needs.
I know what he needs in order to be able to learn and I will keep on teaching him every day with the highest speed possible to make his potential as great as possible. That is when I relax. To see my children succeed is the deepest kind of happiness I can imagine.

I can not choose normal anymore.
I do not want normal anymore.
Normal is not an option.
Progress is.
He looks normal.
He laughs normal.
He is beautiful.
He has potential.
He is autistic.
I will not let those who take care of him forget that or ignore that fact. Strange, to be suddenly in that position. To force other people to acknowledge the fact that autism is a disability, that my child has a disability and to force them to understand that special methods are needed.
This is why we call it special needs.
Duh.
What I see is a bad structure in the special needs system. Two options are acceptable according to the mainstream praxis and there is no active comparison between the two, there is no active discussion on goals. there is no questioning on how well these kids are actually kid doing in school and in life.The studies that have been made are not being used for the purposes of improving the quality of life for our children and their families.
The headmistresses and masters are the queens and kings in their fortresses. They are running child care centers not therapy centers. This is where everything cracks. Parents run into walls and childrens needs are not met.
Our headmistress thinks the goal is to make Sturla into a happy playschool child.
My goal is to prepare him for school in the long run and for his future.
My plan is to raise this child for life. There are no short term options.

I do not doubt the good intentions.
I doubt the reasoning.
Having the heart in the right place is good.
But not enough.

Every ones opinions are equal.
My take is as good as yours.
Lets all be friends and not quarrel or differ.
Excuse me while I puke.

Progress can be measured. Sure we have to decide what to measure and agree how to measure it.
This is how we diagnose.
We have the baileys scales.
The Cars.
The Ados, and who knows what else.
In the same way progress through teaching can be measured and should be measured. This is in short the tradition of science.
I do not accept something, somehow for my child and I will not be shy telling everyone I meet that this is how we are going to do it.
When dealing with the system, be systematic. Point out studies. Point out education or lack off. Point out rights within the system and point out the big ace. The parent power. The, this is my child.

I am very much the my way or the high way kind of gal. I know it and I promise to stop apologizing for it.
I am not very good at this diplomacy thing but I think I am learning. I am at least learning how to wrap my stubborn bloody mindedness into some fancy paper. I hope.
This my own theory or lack of theory of mind I guess.

On the site of the center of special needs and diagnosis handouts in this wonderful democratic state of Iceland. It is claimed that between 3 and 30 percent of children with autism diagnosis will later aquire normal intellectual functioning and gain adaptability within the normal range. This is measured with very mainstream diagnosis scales. 3% is very little, absolutely insignificant almost, 30% is quite a bit more. 30% suggest that there is a chance. 30% is more than Deborah Fein suggested and less than the Loovas study.
What the .......

So I wonder, and really have to ask someone, preferably the one who wrote that absolutely uninformative text, what the heck do they mean.
Is the difference due to the different methods the playschool use?
Is it something else.
How about sharing that info, please.

AHH, now I am chilling, done venting. Done baking cinnamon rolls. The coffe is brewing and Sturla is at playschool working and playing with T.

Monday, April 12, 2010

The hottest topic in the Icelandic autism world

http://amotherscourage.org/

I saw it the day it was released and I saw it on television yesterday. It is beautiful. I truly hope that Soma´s rapid prompting therapy will stand up to scientific scrutiny. I truly hope that Keli will be able to communicate, that he will learn to type and write. I wish that those who everyone have deemed to be hopeless cases, can have some hope.
This film touched me.

Thursday, April 8, 2010

Cooling it and recognising limits.

This is a we are stuck post I have hard time seeing progress post and I want it all and I want it fast post.
I admit it I am terribly tunnel visioned I want progress so badly that I keep pushing and pushing and yesterday I realized it was time to cool it.
Sturla has always happily sat at the table and worked on his program. Yesterday he refused and cried. I could not give in at that moment so we did an extra short session and then went to the pool, when we came home we did an half an hour of imaginary playing and some drawing but I skipped the data part. My steady pushing will be counterproductive if I do not work around this immediatly.
First priority is a happy child that likes his therapy. That makes progress.
And Sturla is not a child with difficult behavior, he does not throw tantrums he is not rigid. There is no excuse for not being able to keep him happy.
I have said it before, I need to be more fun. Therapy needs to be fun.
Maybe I am not having to much fun myself , hmmm what would be a decent reinforcer.
All in all this is not the way to go.
Shorter session. I am reminding myself again.
More playing. Another reminder.
Focus on skills that add enjoyment. That makes future fun easier to come by.
Drawing has been a excellent part of the program in this way. A month ago he had very little skills and did very little drawing now he seeks it out and initiates the activity.
My goal will be that when I call him and say it is time to work he will come running, and I mean towards me not away.
Work and pleasure has to mix.
Four years old, need I say more.
So it goes. The regular search for what do I do wrong.
That is the purpose of this blog anyway to record progress and look at the different aspects of therapy, to recognize it when we run into a wall.
The relationship between the one doing the therapy and the one receiving it is crucial to good results.
Not to mention between parent and child.

T and I discussed this new behavior and decided to cool down a little.

Perhaps this is just a phase. The spring, the increased interest in other kids. The fact that his brothers are laughing in the garden when he is called in to do an exercise on personal pronouns or whatever else his program requires and is probably not the first thing that comes to the mind of a four year old of the most interesting things to do.
I need to bring his exercises to him, not the other way around.
Perhaps it is progress. Refusing to do what one is told all the time. A new sense of self? Whatever it is, this needs to be respected.
Perhaps I have just been getting lazy, and not very creative.
Do not get me wrong he will get his hours. The pace will just be slower and hopefully happier.
His programs are increasingly more focusing on social behavior and interactions. It can not be rushed.
Focus on the moment.
Tread carefully.
Get your head down from the clouds, girl, and remember the here and now.
There is a long road ahead, what matters is today.
Breathe, one breath at a time walk one step at a time.
You see, I know it.
It is just harder doing it.

Wednesday, April 7, 2010

Abstract understanding of language

There is a new roadblock.
Abstract concepts are hard to teach and I am somewhat at loss. The first ones that I want to tackle are the simple ideas of today, tomorrow and yesterday.
The concept of time.
We have taken programs like first last, asking what did you do first and what did you do last. What did you do just now and what are you doing.
I plan to make a sort of picture diary for him. But other than that I have no idea how to go about it in an efficient way.
I may be taking on to many things, confusing him. I probably have to break it down into smaller pieces.
He needs to get the idea that there is a plan in there somewhere, and talk about past and future.
We label things, we label actions a four or five emotions, categories, costumes and the work people do. But we are stuck in concrete land. The land here and now.
I watch him make unexpected connections not always correct ones, but always logical ones and amazingly creative observations.
Did you know that the Peugot car is also a knight. Well just look at the brand mark. It has a medieval lion on front. Did you know that waterfalls are also slides, and that three cheerios rings make a Mickey mouse. Did you know that a circle with a simple line going through it looks like a hot dog. And that snakes make the letter S and that the letter L is sitting nicely.

Little concrete, down to earth creature that you are.
You ground me.

How do we understand time.
How do we teach time.
How can I do it. I am always late.

Monday, April 5, 2010

Amazing nature


We went to look at the eruption, a small scale eruption is a great tourist attraction, a great family outing.
A large one is a disaster.
We started the engine in our oversized fuel devouring Suburban at dusk wishing to see the fires in the dark at a hour when decent people put their kids to bed
It was almost dark when we arrived as it is only about one and a half hours drive from the city. Northern lights dancing above our heads like green silk in the sky. Reddish traces from the sunset at our back and fiery blasts in the glacier. The night was still and frosty and the herd of kids climbed strenously up a rather steep hill to get a better view of the eruption. Sturla went up and up and would not stop. The happiest kid I ever saw.
We enjoyed the view as long as warmth and kidlike patience would let us and then we all slid down that very steep hill to get back.
Such beauty.
I wonder now, when the volcano Katla will awaken, that old dragon is overdue.
She very well might.
She will be disastrous.

Whimsical nature
So how about some language eruption, we are also overdue. Huh.

Saturday, April 3, 2010

Absolutely politically uncorrect.

Me fifteen years ago: "My children will never play with guns." And probably a few other statements that are not up for discussion at the moment.
Me at the present: "Shoot mommy." And then dramatically falling to the ground "AARRRRGH."

Life is a long practice in taking back previous declarations. Eating back your words. I have done it before I am at it at the moment and I will do it again a thousand times over.

My older ones are shooting each other with every stick available and I will of course do anything to make Sturla participate and practice his imagination skills.

So be it. Good shooting. Great dying. Do it again.