Sunday, December 12, 2010

Some days....

The constant hope for improvement is tiresome, the constant longing for new skills and more interaction is exhausting and I wonder if I will ever reach the point of acceptance and live and let be.
I do not know ,I do not know if I want to be there...
I just know that I long for some kind of peace.

I have not done much of the usual stuff we do before christmas. Some.. actually very little and not nearly everything... gifts are still unbought or wrapped. the house is a mess... oh well that is the usual state of our house.
I pretend not to mind.

Behind in our work.. what else is new.
I worry about how hard it is for him to hear the difference in similar words.
Perhaps it is just too hard for him.

Time concepts are still in a fog.

Why and where keep getting mixed up. We are drilling it in and it is hard work for us both.

He is playing a lot. Doing pretend play and and enjoyng himself when his brothers want to play with him. But my heart sank today when I saw he had lined up all the toys. I have not seen anything like that for a long time. He also had a melt down at the muesum park we went today. Crying and throwing himself down. I have no idea why. Sigh.
It took a while.
I was not very sympathetic. I put him on ignore.
He is also stimming more running around in circles jumping up and down with excitement. He moves so fast it is incredible.

There are just to many ups and downs. I have a hard time with the down side.
I am not graceful.

I feel I am neglecting my other children. Autism takes all my energy.

Some days something wonderful happens and I write about it, other days it just sucks.

I have to remind myself where he was a year ago. That he did not play with toys that I could easily count his words and he never greeted anyone.
He did not know his name and where he lived or what his cat is called. So... I really should shut up.

But this is my blog and I will complain when I want to.

The first christmas lad came to town this morning and one little lad got a potato. Not Sturla, his brother Eiki. He got other stuff as well, the Chrismas lad was apparantly to weak to follow through completely with his threats. He got a letter and a warning potato. My Eiki has a bit of a temper and a streak of stubbornness. He is also the only one in this house who flaps his arms when excited. He was a late talker. But had this amazing talent for drawing long before he could talk. He did not say mamma until he was three.

It all begins with an A autism adhd add.

I never worried about Eiki because of the way he he could draw.
Now at eight he makes comic books, he draws stories and he makes three dimensional drawings.
I am glad I did not know then what I know now.
He behaved extra well today making every effort to please his mother play with his brother and tidy his room.

I wonder if Sturla will look into his shoe tomorrow morning I hope he will catch on to this shoe biz.

12 more days to fix a perfect chrismas for my kids.
The clock is ticking.
Tick tock...

I still fell like that white rabbit.

Monday, December 6, 2010

Why did you get a band aid?

Because I got blood?
why did you get blood.
Because the cat scratched me.
This little event took place a couple of days ago. I took the opportunity to turn it into the why and because exercises we are practising at the moment and wow did that stick...
The shock of the tiny drop of blood. The thrill of the colorful bandaid and the general drama was so powerful that for the first time ever I heard him retell a story from his own personal experience.
I got blood
The cat scratched me
I got a band aid

And wow was his mama thrilled

Sunday, November 28, 2010

It is that time of the year.

Freezing cold and constant snot, my house is tiny and the furniture old and worn to shreds I read the Ikea brochure to bits and dream of a brand new world. The darkness already overwhelms me.
It is bright around ten and dusk falls as soon as four, it will get darker still.
We just decorate our old stuff with new and festive lights, the more the better.

I found out to my utter horror that I had neglected or forgotten to teach Sturla anything about christmas. I was not shocked about the religious stuff, not really my cup of tea.
Rather, he did not know any of the names of our 13 Christmas lads. We do not have a Santa Claus. He of course does not know their mothers name the Troll Grýla her hubby Leppalúði and her black cat that eats kids who do not get new clothes before christmas. And that good kids get sweets into their shoes and if you are bad you get a potato.
Such a sea of information that every kid knows and he does not.
I wanted to cry when I realized this.
I made a program and began the drilling.
How many are the christmas lads. 13
What is their mothers name. Gryla
Where do they live. In the mountains.
Are they good yes
Is their mother good. No
What does she do. Eat kids... we have not gotten that far yet.

And he answers obligingly. I do not know, as I just taught him and he runs and asks his father when i tell him to go and ask even though he can only remember part of the question.
My wonderful sweet boy.

I can not cover it all.
He has to learn how to learn.
And I want him to have it all.
I want it for him. I want him to have the self awareness to want it for himself. And when he knows how will he feel?
I am raging ahead into the future.
How do you eat an elephant?
One bite at a time.

Winter is eating me
Like I want that whole Ikea furnishing.
Like I want better weather.
More sunshine

Winter is eating me and I have a hard time spraying it all with glitter and decorating with festive lights.

Just a few more lights and the dark places will be gone.

Thursday, November 25, 2010

It is a computer game.

Sturla does not script much. He does not talk much either compared to normal kids. He tends to use the same phrases rather rigidly and I wonder if that is scripting or just something else. What do I know, I do not know many kids with autism.
We played a game to day. He has been exercising some sort of a free will tendency and I wanted to exercise some behavioral control.
So we played in the stairs go up, no go down and every time he obeyed I changed my mind. He loves such silliness so much that he squeeled it is a computer game as nothing compares to that long love affair with computers. Perhaps light switches , that one pops up regularly.
Anyway, what better way to get a kid to obey when they actually want to.

We have been sick with snot and cold and fever and coughs hopefully he will be well enough to go to playschool tomorrow as I desperately need to organize his papers and programs and to read upon how to do whatever we are trying to do. I also need to boost up the pace and the hours after all this sickness and snotness.

Our staring contest has been going well. We stare at each other until he yells booo and I pretend to be flabbergeisted.( is that a word) I had planned to do the boo thing but he caught on to fast.

We finished naming from categories.
We finished learning where a bunch of animals live.

We are having fun with learning to ask where a thing is. I give a desired item to someone in the room ( we usually work in the living room and as this family is a herd there is always someone here with us) then i tell him to close his eyes and that pre mentioned someone hides the item. When Sturla opens his eyes I ask him where the item is he states I do not know as he indeed does not and then I tell him to ask the someone, He asks and the someone tells him the location and we practise on top of beside and all that pre learnt stuff and then he goes and gets his prize.
I is computer game, it is so much fun

Monday, November 22, 2010


I teach. I teach Icelandic to grown up immigrants and I teach Icelandic to my autistic son.
And honestly it is not that different. My adult students need reinforcement just as much as my son and they need praise and a smile when they do well it reinforces their efforts.
They need generalization as well. So we do weekly trips to stores and museums and everywhere to places where they can use their Icelandic. We cook at the end of the week to teach verbs in actual surroundings and to create a friendly atmosphere, connection and to talk over food. In an amazing way it works. People start talking when they feel secure.
The things my students find hard in Icelandic are similar to those my son finds hard. Words that sound alike. Making a sentence with the correct word order and using the language in the right circumstances. Autism, adults, children. We learn the same way.
Repeat and repeat.
Break down the components og language into digestible bits.
Connect and create a friendly enviroment.
Repeat again.

Wednesday, November 17, 2010

A new interest.

I recently bought a few books that I remembered from my childhood. I bought them both for nostalgic reasons and also because of the sentence structure. The sentences are repeated again and again with slight variations. The books have the same theme... someone wants something and asks for help, various characters refuse again and again until at last someone will comply. The wording is perfect short sentences with good vocabulary. They are also perfect for asking why questions.
Now ten days later a find out that he has memorized them. It was interesting to watch him retell the storys. I never have the opportunity to listen to his voice for such a long while. It was wonderful... it also gave me the opportunity to listen better for the sounds he has trouble with. There still are a few. He has no idea how to use words like, in, at, for and so on. Those words change the meaning of the verbs and he just puts them randomly into the sentences. Something to chew on and figure out how to teach.
When he started to retell the same book for the second time I stopped him and suggested that the main character who is a little green hat was indeed a purple sock, he laughed as i expected and said no... then he got a better idea he started to tell the story again but every time the little green hat was mentioned he became a sock and Sturla laughed and he laughed.
The thing is.. he has found a new way to entertain himself and now he tries to take the books away from me and do it all by himself...
Not what I have in mind.
I plan to have our book reading a bit more interactive. He also tries occasionally to switch the books in the middle of the story an make me start on new ones.
Not according to my plans either.
We have ourselves a little battle of the wills.

What can I say, I am bigger than you, son.

Thursday, November 11, 2010

Nothing unspecified just ordinay autism whatever that is.

Sturla is diagnosed with typical autism, nothing unspecified about it. He scored zero on language when he was three years old. I disagreed, I heard words but they the diagnosers did not and when I told them that he used his words appropriatly I got the pity look. He spoke this beautiful gibberish that sounded like language but hidden inside were those gems, words and meaning.
So this is what he got on his third birthday, because that was the day of his diagnosis, we spent it at the clinic, ordinary autism no language and mild mental retardation. And have a nice day.
I think I lost my mind that day.
I wanted to believe that he could and would be able to do anything. I still want to believe that.
Two years, two playschools and so many tears and work hours later this is where we are.
We still have mountains of work ahead in language and in social interaction and that work may very well never be over.
Interacting with peers is the hard part, as for all our kids. He follows the routines like the others and he adjusted very quickly to his new play school. The routine is very cut and square, so it works out perfectly for him.
Not much room for insecurity when you are on a tight schedule.
He has trouble in crowded noisy areas where everyone is getting dressed at the same time, but still the staff manages somehow to structure the environment very tightly. They do this, not for him it is just the policy of the school.
I am happy that he adjusting well. :) I am just very very greedy as well. Always on the lookout for deficits, as depressing as that is. Looking for flaws is what drives the program it is hard to fix things one does not see or acknowledge.
Staying happy and critical at the same time is my challenge but it is nothing compared to the challenges that face my child.
I watch his peers and how they chatter and interact and Sturla sits in line, yes but he is quiet and just waiting. This is mostly when they are going out and dressing in their warm winter clothing. In other situations he is more animated and lively and he is funny.
When he starts exchanging comments, just one or two with his peers my happiness level will rise considerably. that is what I want to happen very much sooner than later.

Monday, November 8, 2010

Relax and let it go.

My advice to myself.
One day for me is like a week an hour can be endless. So many thoughts can be crammed into an hour that there is just no end to the worrys and grumbling that can take place.
The sane logical part of my mind knew from the start that the new play school needs time to adjust and that they do not have a therapist for him until after christmas. The have everything in place a team of therapists working together and supporting each other. they are really nice and I believe and hope this is the right placement finally.
It still makes no difference for the my other half, my crazy mind, I already feel things should be like this or that and that people can do more and sooner. I bite my tongue hard and smile and wait because there is nothing else to do.
Still I should be happy that he is following the routine of the other kids without support following verbal commands and doing the same as typical peers. Still that is just the surface. He is an easy child and I know he needs to be prompted to do more and truly participate I want him to do more and for that he needs an aide that works on specific goals. The next meeting will be 19 of november.
It is not long, still it seems like ages.
There are just so many thoughts to think until then.

Tuesday, November 2, 2010


The first five ideas for reinforcement are simply copy paste ripped off from the lovaas institute blog site. I shamelessly post it here I intend to try them out the next few days.

Aladdin's Magic Carpet! Put the child on a towel or blanket and pull them across the floor.

Jump! Sing, "Jump" by Van Halen and jump when the song tells you to.

I'm Shocked! Fall completely over with surprise and shock that the child answered the question correctly.

Car Ride! Line your chairs up next to each other and go for a car ride. Put seat belts on. Check left and right for traffic, beep the horn, etc.

Monster Palm! Draw a monster on your palm. Use the other hand to hold the wrist of monster palm so it can't get you. However, we all know a monster palm is stronger. Elicit the child's help to get rid of monster palm.

Sturla loves beeing asked if his name is toothbrush or other silly stuff.
He loves silly statements.

He loves opening little boxes and see what they contain, sometimes it is nothing at all.

Sometimes I wrap up old toys and things just so that he can open them. To build up curiosity and excitement.

He loves when I pretend to whine and cry.

He loves being thrown around in our big bed.

He likes short game sequences.

Roller blades and his bicycle.

He loves sweets.

Pez figures and icecream.

He likes stupid glasses and hats.

He loves it when I sing two songs at once and switch between the rally fast. A hard thing to do for someone with very limited musical abilities. Perhaps that is why he likes it.

He likes gluing paper and stuff together that make little figures.

He likes tickles and old games that I cannot translate into english but probably exist there as well.

He likes to get off on a break when I am too greedy to see sense
but most off all he loves it when his mother is happy and full of energy.
Tomorrow I will try out an eye contact game. The purpose will be to increase the time he looks at my eyes. I will make it one or two seconds at first and slowly increase the time until we have ourselves a nice staring competition. The closure and reinforcement will be some silliness and stupid noises or facial expressions on my behalf that hopefully will make him laugh.

The right reinforcement can make all the difference and I am endlessly looking and searching for new ideas. It is so easy to get stuck with the same old. I know for myself I absolutely do no do anything for just anything. My carrots have to be both sweet and crunchy. And that you are my sweet boy.

Monday, November 1, 2010

Sense on some nonsense.

I will have to accept the fact that the new play school needs time to start up their work. Things are complicated as the therapist that will be working with him will not be back until after christmas until then everything is a bit of mix and match. He will be getting 4 and half hour with an aide every day so they will deliver a littler over 20 hours a week. He needs time to adjust, they need time to adjust and I have to be patient. I still worry that the next two months will be without very specific goals.
See ...this is a trust thing...
Trust is something that builds in positive experience and my experinece with playschools has not been very positive. The ladys at the new playschool have on the other hand not given me any cause to think that they will not do a good job. Still I fret and worry.
Breathe in and breathe out.

I am in the process of structuring his home program and in a very optimistic manner believe that I can deliver about 20 hours a week. I plan to work on about six programs.
Naming from categories.
WH questions.
General knowledge
Asking questions.
anecdotal memory
Social interactions and play skills.
I might have to cut out one or two programs though if it proves to much.
See I am trying to see sense.

I have been reading the book Sense and nonsense in behavioral treatment of autism. Sensibly they point out that this is not a competition of how many program we finish, it is more important to pin point the skills that might open up other new areas and at the moment I would say anecdotal memory. Sharing experience. There is so much I want him to grasp and to get. But there it is on the top of the list, a glorious goal.
I want to be able to ask what did you do? And was it fun?
It is of course hanging together with basic conversational skills that still are very much lagging.
I have seen that he learns preacademic skills rather quickly and we can allow ourselves to dawdle, there are more important things to learn.
He can memorize quickly but that is also not so important in comparison with sharing experience and playing with others.
I really need to set our priorities straight. Working on the right things is so important.

Another thing is the hours. I just read that those famous forty hours are average hours. Actually the children in the Lovaas study got forty hours on average meaning some got as little as 20 while others got 50. It still does not tell me what my child needs. Psychology is not a very exact science. So until someone can tell me I go by more and overdo do it in the most superfluous way I can. Less is bore. More is better. And if that does not make sense so be it.

Friday, October 29, 2010

New play school again.

We are not exactly gathering moss.

As I mentioned before Sturla therapist quite suddenly decided she was fed up with her work. She was, is fed up, I guess with the play school and the lack of understanding of the therapy she was trying to do. On top of it my son is the first child she is working with and she has had to learn how to swim pretty much by herself. In many ways she did a good job. She did not have the support she needed within the playchool. She is going to somewhere where there is experience and she can learn something.
That left us pretty stranded. The knowledge that has been built up the last year just left.
What was even worse was that this was in the beginning of fall and at that time all play schools are full, both with children and they are fully staffed. ABA therapists are hard to find, good ones are... always even harder to find.

I did not like the idea of a new play school I had already slammed the doors on one place and I just did not want to be that lady. Beside Sturla was beginning to show some vague connections to the other kids. I wanted to stick it out make it work. But in the end it is not about me... or maby I should put it like this i will be that lady and I will be whoever or any kind of person it takes to secure him a good education.

The play school hired two young inexperienced university students to work with him one was supposed to be wirh him one and a half day and the other two days, and for one and a half day a week a special ed teacher very experienced in TEAACH and with very limited interest in ABA was planning to work with him She had no intentions of becoming a therapist. None of them were supposed to be with him on an every day basis and the girls only came in for their work with him and had no chance of getting into the social dynamics of the kids at play school. For that you have to stay and observe.
I am also fed up with university students using my kid to teach themselves the ABA basics.
So I slammed the doors. I lost my temper. I yelled at people and I have not gone back and I am not even sorry.
That is a weird feeling I have never yelled at anyone and not been sorry.

I found another school by some stupid but lovely luck. It is pretty far away, who cares...
They have been using ABA for five years now. Sturla will be the fifth child with autism in that school three boys and two girls and everything is very structured and solid and he seems to fit right in He is over there just now and I am hoping so hard that this will work out.
They seem thorough in how they work. I can sense an understanding when I speak ( hope it is not my imagination)
I probably have to learn how to let go and trust people. I plan too... it is just that I have been hovering for so long I will most likely find it harder to adapt than my son. They will be taking things over. I will have programs that I work on at home as well as maintenance and generalization. I might have more or at least some time to breathe and that might be a very needed thing.
I will celebrate when all that happens.

Sunday, October 24, 2010

Regrouping again and again

I invited the family and some friends over today to celebrate his birthday. It was nice, I am still recovering from the crazy hectic weeks that have passed.
I delivered my drawing, the editor was pleased. I can pay the ABA psychologist. The house is cleaner than it has been in weeks. I still have mountains of laundry and stacks of paper to be sorted, I just pushed it all under the sofa. I hardly baked anything, therapy hours are terribly low, I have been to worried and to busy to handle anything at all. I do maintenance work and that is all.
I want his hours between 35 and 40. This week we are between 20 and 25.
Time to rise up again and get going again.
Sturla was curious about his gifts, he greeted and and said his farewells very nicely. He did not play with the kids but gave them all sweets and called them to come and get some. He sang with us, answered questions about his age and tried desperately to escape to the computer as time went on. I gave him assignments one after the other I wanted to show him off. Aint we funny creatures. He draws and builds age appropriatly. His fine motor movements are better than his peers and better than some of the older kids. He is amazingly careful and neat as he draws between lines and suddenly he is counting, writing numbers an imitating letters on his own.
He is going to new playschool.
They have some experience.
I am a bit hopeful again.
We are putting the main emphasis on the social stuff the following months. I am hoping he will catch on....hoping he will learn as quikly as the other stuff.
As I write this he calls me
S:I am doing this... ( he is making strange steps) this is increasing this is what we call the announcment duty. I am going to pee I doing this and that and see this and that.
I love it.
S:I am going to scratch your back.
MMM that is nice.
S:What is this?
Wow a spontaneous question the secon time this week.
Please start playing some more with other kids though.
We still have very much work to do in that area. I am allowing myself to be optimistic though.
S: Is all well with you.
S: I put a car on your head.
Thank you.
S:I am going to poop.
hmm, allright.
S: or maybe I have to pee no poop.
No matter about what I find it unbelievably precious.

Wednesday, October 20, 2010

I have a birthday boy.

Five years ago he was born painlessly in the bathtub at his own house so quickly and easily that the nidwife, because this was a planned homebirth missed the occasion by a few minutes. His father did not and arrived ten minutes before his appearance just in time for the last push and lifted up our calm newborn son from the water.
He was almost like sleeping, as if he had been born asleep. His eyelids quivered slightly his colour was bluish and I did nor see him breath right away but he was still attached to the naval cord and it was pulsing. I saw him turn pink as the midwife rushed up the stairs three minutes later.
He scored ten on his first test the Apgar score. But he made no fuss about it. He went immediatly to the breast and drank and slept and drank and slep calmly for many months to come. We opened a champagne bottle and I felt as I could take on the world I could conquer anything.
I watched him stick out his tongue and imitate me when he was only one weeks old. He shrieked at two months old because he had fixed his eyes on something but could not yet control his arm movements. He was quiet when I placed the object on his belly but his arms waved vigourously to the sides. He seemed so determined so quick and so eager to take on this world. He spoke his first word at six months often and consistentley for a few weeks and then no more I did not worry he was to young for words anyways.
They did not come again, those words or at least they appeared in a strange inconsistent manner. He seemed to have forgotten things he had learned he seemed aimless. Complicated words appeared that were gone as soon as they appeared. He walked early and was off...........running away stark naked he always took off all his clothes and I never could take my eyes off him i have not quite recovered from that watchfulness and I still hve not let my guard down.
He was sixteen months old mastering the mouse on our computer and playing games. He was two years old and putting together 100 pieces of pussles. Putting the pieces in the middle of the field in a strange exact manner. I had no idea what to make of him, this sweet mannered gentle child that hugged and kissed and laughed but did not say mamma and never asked for anything.

Today five years later we surely need this empowerment his manner of birth gave to us we surely need this believe that he will conquer all his troubles and we will pave his way as much as we can.

Who has a birthday today?............ you?
no it is you. You?
No say I. I

how old are you.. five
GREAT you are five.

He is at playschool wearing a birthday crown and working hard for his future. I will pick him up early today and we are buying a bike. Baking a cake and making a birthday with him and his brothers.
I will later write about the troubles we are having in keeping the pace of his program but today it is his birthday.
Happy birthday son.

Tuesday, October 12, 2010

Curriculum update

Wh questions. I am somewhat pleased that he is not confusing them much.Some combinations seem to be harder than others especially when the questions contain many similar words or when he has not mastered the meaning completely.
Like where.
So we are working more on where.

Imagination I found a program that goes like this.
What is this?... a spoon.
What do you do with a spoon? I eat
What can a spoon be used for? Then we teach multiple answers and the goal is to get him to come up with his own ideas. Spoon can be a sword a guitar or even a tail.
We just started. I can tell in a few days how it is going.

We are finishing the last bits of the program that teaches occupations and characters like king and queen and such stuff. Then we have ample material for more complex wh questions.
What does a king do?
Who rules and wears a crown?
What does the ghost do?
Who boos and is scary?

He like that last one.

Everything has do do with questions and answers Imagine a day whee you would not answer a single one or ask for anything. Statements, demands, descriptions, unasked information.
Not many conclusions.

Naming from categories, like name me an animal. Can you name an other one? Do you know more and more and more slowly extracting bits and pieces of information. I am worrying we are not doing it right or not reinforcing right.
I need do check into this an d really really would like to see some one working on this properly. This will give many opportunities for games when mastered. Games to play in the car for example.

Social stuff. BLah.
WE are lagging. There have been difficulties at the play school in getting the hang of it. I hired someone to direct the program for them and she just started taking a baseline of what needs to be done I like her immensely but she needs time to get things started, besides she will be away for two weeks next month. And we are changing therapists. So this will take time. I am pushing them to start and to act quickly neverthless. Pushing and pushing.

Another thing we have started is a diary. The purpose is to teach concepts like today and yesterday. To start using past tense and to get him to understand the meaning of past tense.

A visual schedule is to be made with the concepts yesterday today and tomorrow. Solely for the purpose of teaching those concepts.

Another visual schedule for his day at play school . The never got around to it. To my utter annoyance so either they make ti this week or I make it for them.

We are preparing for retelling and talking about shared experience. A conversational skill much needed and a skill that would be appreciated by us his parents.

I want chit chat.

Tuesday, October 5, 2010

Then he whispers I love you....

I am again trying to improve my teaching methods. Trying to shorten the sessions, varying them and to use every natural opportunity to teach. I am impatient with myself and sometimes with my child.
I try to better myself I try to remember to be kind and patient and that we are making baby steps towards the future. Some days I am better at it than others. What I have found out about myself is that I am more a stubborn person than a patient person.
Good to know...

I have always felt that the english language over uses the words I love you. Food is loved and clothes and activities and endlessly so on.
In Icelandic these are serious words and hardly used. Perhaps to little.
I remember my father telling me that inanimate objects can not be loved. They can only be liked. Love is for people and sometimes animals. Even so they are to be used with respect.
I do not use these words often. The seldom I do they are laden with meaning and emotion. That is how I have whispered them to my children.

The day was bad, I was tired impatient stressed out. Doing the exercises like chores, wanting to be finished and feeling extremely guilty for wanting to hide myself somewhere quiet. Wanting only peace for myself.
The day after, when I had slept and somewhat replenished my energy I did better, I tried very hard doing better.
Sturla got a break and instead of running away or going to the computer he climbed on to my chair put his arms around me and whispered those wonderful words.
I love you.

He has not been taught those words specifically like when I taught his name and home adress or his age.

They came to me laden with emotion and meaning.
His sweet soft arms embracing me and his head resting on my shoulder.

Sunday, September 26, 2010

Regrouping in the rain

The rain is pouring.. pouring like it never did when I was a child. Must be global warming.
The leaves glisten in the dusk and it smells outside like a lush foreign place.
It used to blow sideways upwards and downwards and no one used umbrellas because it was not practical, not even possible in the wind.
Umbrellas were foreign and exotic in my mind as a child.
Different times and everything is soaking wet, now the rain pours straight down to the earth.
I am trying to unload my mind and get away. The boys are watching a video I have finished preparing the material for playschool tomorrow.
I feel uneasy.
Perhaps just tired. One more week without a therapist at playschool to go.
The new special ed teacher is busy putting up visual schedules and visual aides. I told her we did not need that, we wanted a different approach and she mentioned ideological differences...
I am tired of being angry.
I need a good nights sleep before I get mad again.

I am giving myself this evening and this rain.

Tomorrow there is work there is therapy and some drawings that wait but that is tomorrow.

Tomorrow there is a new beginning... as always. Tomorrow it will all work out.
drop by drop it will work out.

I promise myself and I promise you... my beautiful green eyed boy

Thursday, September 16, 2010

Vacation out of the blue

A sudden vacation.
Yes... I knew about it I just forgot... or chose to forget.
I am just whining
So his therapist went on a two weeks vacation.
And she is quitting on top of it.
There is no one to keep up the ping pong at playschool I am working and I have an illustration project due in a few weeks. I am drowning and deeply and thoroughly annoyed.
I fetch him as soon as I am done working and I do the drawing at night or not... I hate having to postpone... I want to deliver on time.
My son has a right for certain services and to me those services make the difference between a semblance of normalcy in daily living or a chaotic keep it up and pay the price of exhaustion again.
I am tired of whining...
I just want it to work.

The good part is he started talking more and more just now in a few days it is amazing.
I mumbled what day is it. He answered it is wednesday. I I do not get it. He does not understand the concept of morning and evening and now he tells me it is wednesday. (thursday I mean I keep mixing them up)
Surprised does not cover it.
Any suggestions?

Sunday, September 12, 2010

Some language and some jokes and some trouble

So... we have language... sort of.
We have sentences but we barely have a conversation. I have been waiting for communication for... what is it three years now. I would barely call myself impatient....
something is brewing though.
It is just that for every step he makes I want more more more.
There is not much echolalia any more. There is some spontaneous use of language asking for things, now and then a novel idea turns up now and then and even one or two jokes.

Sturla walks all hunched up, not standing upright and barely able to speak and says I am small, I am small.
Today he went to the toilet with me at the swimming pool. stopped for two seconds over the toilet with his little thing and said I am done peeing without peeing at all. Then he laughed...
those are his ideas of jokes.

Still he is barely conversational. He ignores more than half of everything that is said to him and is often unable to understand the other half.

I had the idea of implementing pronouns into an exercise in the first last program we finished a few months ago.
So... take first this and then that, and then I ask what did you take first and what did you take last.
I had a doll on the table so instead of saying doll I said her in icelandic it sounds like hana which also means rooster actually.
He fell under the table laughing.
OK ok take first doll and then whatever else there is.

Pronouns have been a struggle. Perhaps because language wise he is not ready for them. He knows now the basic words but implementing them is another thing. I mean he is not reversing them he is just not using them at all.

The language disorder is hard and it sucks. He has such a hard time deciphering what people say. All words that sound remotely alike seem to sound the same to him.
receptive language disorder I would guess but we do not weed out the disorders that make all this into autism, do we.... it just goes all into the same ununderstandable melting pot of autism.

He is losing his therapist at play school. I am having regular anxiety attacks because of this and as usual my main strategy in coping is getting angry.

Damn damn. why can we never be secure with anything. Therapists with any experience at all are hard to find.
I want some one who is thrilled by him and loves seeing him succeed. I have such a hard time trusting the playschool and all the package our wonderful well fare system in our social democratic scandinavian world brings to me so generously free of charge.
I am meeting a very nice psychologist and an ABA therapist next week to straighten up our social workout. God ... please make it work out.
This I have to pay out of my own pocket or find some pocket who is willing.

Tuesday, September 7, 2010

The forest and the emotional yoe yoeness of it all

It is about the forest and not the trees.
Trees are good, but it takes a lot of them to make a forest.
Autism is seeing only the individual tree or perhaps just the bark or the moss and getting lost among the leaves.
Sturla loves watching leaves. They mesmerize him. I watch him face the window and he will not answer and his eyes have a glazed look and they are fixed on the leaves as he watches the wind rustle among them.
I will not let him be, I will not let him get lost.
I will make him see the big picture. Or I will die... or something like that....
I am a total drama queen, and not very graceful at all.
I swing between hope and despair almost every day. It is absolutely stupid.
I just cannot help it. I get lost among the leaves. The big picture is just to big for me. I only see it now and then, when Lucy lucid visits.

Then I remember the gains, the strides, and the small steps we have made and all the work well done.
Then I see my child for what he is. A child with incredible patience and an endless will to learn and I know I am lucky.

I often wish I were more graceful and serene and accepting of life. But then ...what would drive me on.
So I will accept the emotional roller coaster ride.

I will keep on being this raving mad mom swallowing my pride, my anger and my sorrow, because that is what it takes being his advocate.
This is not a popularity contest. Nice is not getting me anywhere.

I have this incredibly stunningly beautiful boy. Green eyes and blond hair, perfect skin and with such charm....
He is clever and funny, he loves hugs and kisses.
I truly believe that he can do anything if he sets his mind to it.

We are building a forest. And as with all the emo stuff, therapy is about seeing the forest and not just the trees. Individual exercises make up the big picture but it is the overall skill that is the forest.
I handed Sturla a stack of cards tonight and asked him to teach his brother. They sat down and Sturla asked with a tiny prompt in the beginning, who is this? As he showed his brother the cards. His brother answered.
Every time Eiki answered correctly he got praised (the praise given with out any prompt) but a simple no for wrong answers (no prompts at all). When his brother said something silly, Sturla laughed, but kept on with his game.
It was delightful.
They were playing, enjoying themselves and they did not need me.
The kind of moment when I believe everything is possible and only the sky is the limit.
We will reach for the stars and see how high and far we make it.

He just has to catch a glimpse of the forest. I think.
Just like me.

Tonight I saw the forest and it was absolutely beautiful.

Friday, August 27, 2010

It has to be said.

So... I am reading this book, well several books actually and this one is very very good, and about time I read something like this. What is even better is that hubby is reading it as well and we are both nodding our heads in unison. nod nod.

The book is called sense and nonsense in the BEHAVIORAL TREATMENT OF AUTISM! it has to be said.
Quite a title.
I will probably be quoting this one once in a while or perhaps every now and then and even more often than that.

The thing is I tend to be overly optimistic, looking at every tiny step as a breakthrough and then I break my own heart over and over again because of what it really is, a tiny step towards our goal... Which is again....
Recovery?... it has happened... I want it... It is written somewhere in the sky with golden letters and very few can reach it the ultimate prize somewhere at the end of the rainbow.

What our goal should be is fulfilling his potential, working as hard as we all can for many many years to ensure that he can have the best possible future. It is not as glorious. It is a more tangible, down to earth, sensible footwear, strive and work kind of goal.

It is not about me in the end. Sure it is hard to separate myself from all that emotional, work laden worry about it all and what will be... mush and goo.

But that is what I have to do.

What our program is doing is spoon feeding every skill in tiny tiny steps and I am beginning to catch a glimpse of how that intricate net of information and skills weave into each other. One thing builds on another.
Some things are by rote in the beginning but when the skill generalizes a door opens and that is wonderful.
DTT is the necessary groundwork and should as quickly as possible be mowed to all surroundings. We teach Sturla outside, amidst running kids on the playground when the weather is good and on his break he runs with them. They join in on exercises that he has somewhat mastered and he can show off when he is good at something.
we make a lot of mistakes that stall his progress and we try to correct ourselves. We are learning as well.
I am promising myself to remember that time is working with us not against us. Time will make us better at what we do, time will facilitate his progress and he is learning as time goes by.

Time and hours.
I have seen time as my enemy. That is a very stressful point of view and counterproductive.
It is stressful to fill up the hours. I want to mark the number 40 on our data sheet rain or shine.
The Loovas children received on average 40 hours. The truth is the children who learned the fastest received less and those who progressed more slowly more. The hours were decided according to the childrens progress.
What does my kid need?
The thing is no one can tell me and I am not taking any chances.
He needs at least 30 and perhaps more than 40 hours of formal ABA instruction every week.
What qualifies as an hour?
A specific consistent goal and the methods of ABA.
I have not found a better explanation. Still for me it is not clear enough.
For the last year I estimate that Sturla has received on about 35 hours on average 46 weeks a year perhaps a little more I would have to look it up playschool closes four weeks a year and then there are the holidays. I very much doubt that all those hours would qualify as high quality ABA.
What can I say...
We will keep going and get better and better.
We will strive to add quality to those hours.
We will strive to increase those hours.

I will remember our true goal.
I will stay optimistic and realistic. (hopefully that is a possible combination)
I will stop crying over a lost future that has not even happened yet.

And I will read this post again to remember what it is like to be clear headed when my head turns into an emotional mush which it will... again at some point on this very very long road towards the future.

Saturday, August 21, 2010

Where are your clothes? Your shoes and where are you?

I lost my clothes.
not lost.
Go get your clothes.
I do not want to get my clothes.
Quick, go and get them.
I do not want to.
Where are they
are they in the bathroom.
No... giggle... on the refrigerator.
I want juice.
Well get your clothes.
first juice..
well then... put on your pyjama pants.
Whine (puts them on)
Are you finished.
Yes I want juice

A little while later he runs into the garden. I let him be even if he has no shoes on the weather is still rather warm. he is laughing with his brothers. I feel happy and hopeful. Will you watch him and play with him for a while, I ask his brothers.
They are to young to watch an autistic runaway.
But he has lulled me into false security. I have been relaxed this summer. I have watched him but I have not been overly anxious...

Less than five minutes later he is gone.
I run in circles, there is a team of little boys on bikes gathered and circling the neighborhood. Ten minutes later I am frantic. Twenty minutes later I stop a police car. They return a few minutes later with him and his tricycle.
Blond barefoot boy on a bike.
He was gone about thirty minutes, he went pretty far cycling as hard as he could i guess.
I am crying, his brothers are crying.
He does not have a care in the world coming home in apolice car sitting beside a giant man wearing black uniform.
As I sit on the stairs crying as we all do when there is nothing to be afraid of any more.
He comes and hugs me.
I have a hard time to stop crying. Thinking he will be lost to me on some level always and forever. My hubby calmly informs me that he himself got lost at that age, he went to look at curtains apparently.
I wonder what Sturla went to look at. It would really make me happy to know that he had some plan.........
I wish I could stay unafraid.
I tried to have a conversation about what happened.
Not much luck.
Did you go cycling.
Who brought you home? (Wh questions have not been mastered and generalization in the program about who does what including police men is still not fluent)
Was it a cat?
Yes.(Always a good option when unsure, I was hoping for a no and a giggle)
A black humongous cat, I presume with a drivers license.

Friday, August 20, 2010

Where from now... curriculum update

Compliance does not equal progress.

So he is working again but our program has been a mess and now some time must be taken do understand what we are doing and where we are going.
So many WH.
So wh questions. First we must teach him to dicriminate between all those types of questions and then we must get him to answer them in a mixture and then we intend to teach him to ask questions. Sounds pretty straight forward.
I am tearing what little is left of my hair out.
we are having a hard time planning and getting it, us, not him, not yet. I have no intentions of just starting something and not knowing exactly how i am going to finish it.
Stay tuned.

So what does a cook do and who cooks.
Going ok now we just forgot to do the nonverbal version first. Giving him a hard time no wonder he was getting non compliant we were not doing it right and making it too hard and not so much fun.
Sometimes we forget the basics.
No more I promise... never ever again.
Short cuts are not short cuts in the long run....
The thing is he loves to be good at something who does not and I intend to take every measure necessary to boost his confidence.

Back to categories. Time to add understanding and to ad more categories and to use them in a more conversational way.
First add categories
Then ask something like can you name me an animal ... and do you know another one et cetere.
Remember to do the nonverbal version first.
I intend to scribble it on my forehead.
I intend to rewrite all hmmm at least some and hopefully rather many of his old exercises into games.

We are playing I see a ...when driving. I see a red car or a woman with a stroller... a mountain... a tree a whatever. He likes it and has gotten pretty good at it this summer.
I need more game ideas like this.
Sometimes he makes something up... I see man with a silly hat and he replies I see a woman with a silly hat.
Are you lying?
NO you did not....
He giggles

Counting starting again from the very beginning now with very an explicit plan from certified professionals.
Deep breath...
If I loose it I intend to leave it all to my dear patient T.

General knowledge is fun and about time... only we again made the mistake of not doing the nonverbal version first... little backtracking and a tiny sigh.

Other things I am working on is pronouncation.
Building. I giving that already mastered program a facelift.. going well.

Social skills.
Playing with peers.
Joint attention.
Taking turns.
Asking to join

I am hoping to hire a person to run that program specifically.
I am quite tired and really need the help, it is to much for T as well besides she is new at this just like me.

PS. I got a the book Teach me language. Reading hungrily.

Saturday, August 14, 2010

Back and forth and forth I hope again

I have managed to gain some behavioral control or in other somewhat nicer terms cooperation.
We are working smoothly again and now I just have to stay on top of it, at least until I fall off again.
I feel some steps are being made but I am unsure how exactly, perhaps because he followed corrections twice in a row so easily when on a break,I only showed him once and he did it and then I corrected pronouns and he corrected himself imediatly. there was something about the smoothness of it that made my heart beat a little faster...
Then perhaps it is just my hopes growing wings again.

we had a very good session this morning and then went on a day trip to þingvellir. The second session just before dinner was even better and he was happy, he worked fast and replied with a firm sure voice.
I have been having trouble with him whispering ,often so low I can hardly hear his voice. He does this both when unsure and when uninterested.
Not today.
Everything seemed clear and sure.
I wonder if replicating the rythm of our yesterday will produce another day like this one.
Long morning session, extended physical activity and a long break followed by a long session again.
I want all days to be good days.

Wednesday, August 11, 2010

At the request of K floortime light mama who left me an award on her blog

I love words like brocade and baroque. They roll off the tongue and are themselves as decorative and full as what they describe. I love words and how they rhyme.

I love the work of Hundertwasser and Lalique. Their work is full of endless details and I never get bored. I love Klimt and Kjarval and many others. I love art nouveau.

I love reading fairy tales, folk tales and fantasies. I love the connection to the past and to nature. I love nothing better than reading actually. I love museums and archeologie and the smell of old books.

I am curious about people and I love the sound of other languages the smell of different foods and I love to watch movies.

I gave homebirth to my four sons and the last birth was painless. It was the most amazing experience in my life. The ultimate control.

I draw and I write childrens books and I believe in dreams.

I eat too much sugar I drink too much coffee and I have a tendency to forget to eat and a tendency to have to much going at a time.

My dear hubby suggested that seven items about me would be..

me, him, our daughter, first son, second son, third son, and fourth son.
Funny guy
but there is a truth to that too

Monday, August 9, 2010

Do they sell wisdom?

I have a hard time keeping up the quantity of hours but even harder time using those hours wisely. I am just not hat funny and creative all the time.
I want to stop thinking.

Why son, do you talk to dogs and not me?
I am jealous of dogs.

I am waiting for a truckload of books I just ordered from Amazon. Hoping to buy myself some new knowledge, insight or empowerment.

Thursday, August 5, 2010

Motivation again

One of the things Sturla is practicing at playschool is dressing and undressing himself and to be rather quick about it.
Taking his clothes off has never been a problem and getting them on has not been so hard keeping them on is another thing... he simply loves taking them on and off and on and off Usually i find him naked in bed by the time I go to sleep myself sometimes he has changed his pajamas or is just wearing something that grabs his fancy... not as often though.
He is slooow not because he does not know how to dress but because he is not motivated to hurry up he dawdles and lingers he is sooo slow.
T told me she thought she had already witnessed the fastest he could go with what she thought was a good reinforcement... she was wrong.
There was a stray cat on the play school premises the other kids already had their shoes on.
He did not and when she pointed that out to him as he was about to rush through the door to catch a glimpse of the cat. He was quick and fast getting them on. He could hurry up for the cat, no problem.
Should I get myself a bag of cats and dogs?

Todays social therapy and natural environmental teaching was burping with his brothers. Burp sorry, burp sorry, burp sorry...

Next we practiced yes and no...
He still has a tendency to answer yes all the time and whenever without any thought to what he is being offered or asked. So at dinner when he was full..
Yes I am nasty... I asked if he wanted more fish he said yes. So he got more straight into his mouth. He was a bit surprised but next time he said NO.
So do you want strawberries. Yes.. mmm
Do you want coffee. yes ... He drank it and laughed.. pulling my leg....
No more coffee though for you son... Bedtime soon.

We are having a lousy time counting, still.
The reason... inadequate maintenance and generalization and I do not have a bag of live cats and dogs.
Yet another thing to figure out.
This is just a small portion on what went on today.

I am focusing very hard on the good and keeping the bad and the ugly away.
Wish me luck.

Saturday, July 31, 2010


The key ingredient lacking in autism is motivation. The key ingredient in ABA is turning on that motivation. Wanting to learn is surely the key to learning. Wanting something in the first place is the first step in getting it.
My son seems somewhat resistant to my efforts at the moment and that is frustrating I am trying, just obviously not hard enough. He squirms and finds it hard to focus he is bored I guess, he runs away if not directly seated in his chair and I do want therapy to take place in other places as well that is more fun for us all.
Yesterday I saw T ask him a question at playschool , he answered but he was already out the door before he said anything. The same goes on with me if I am not very structured and strict and no wonder he finds it boring.
The question is what are we doing wrong.
Is it not enough structure in teaching settings or perhaps inconsistent teaching methods between us two.
Is it inadequate motivation?
Wrong use of reinforcement?
Should I warm myself by the idea that difficult behavior is the next step to progress. I do not expect any miracles any more and I just have to figure this out.
How many hours should we use strict dicreet teaching trial methods and how many hours on environmental teaching. I think about fifty fifty.
Suddenly I find that an item that is considered learnt suddenly does not stick and I am quite confused and frustrated. Seems that he did not pay enough attention when it was taught in the first place.
What is it?

Oh my... how can I worry so endlessly.
Just now I hear Sturla complain to his brother.. J you are not playng the game... and then going to his dad stating I have a gun.. the favourite game in this peace loving family to my utter delight so to speak is playing with guns and shooting each other. What is is with boys...such balm on my worrisome nature.

Friday, July 30, 2010

My name is...

Generalisation and fluency is at the top of my mind at the moment along with several other things.
This was a scenario I witnessed at playschool yesterday.
A little boy came and announced, as it seemed to no one in particular, perhaps just the world in general.
My name is G.
Sturla was silent he looked but said nothing I refrained from promting I wanted the scene to unwind naturally and see a natural response. So he watched and I felt he was obviously thinking.
The boy however did not have time to wait, four year olds are to busy to wait and they definately do not count to five or ten before expecting a response. So he exclaimed I have a Batman T shirt.
(I wondered if he had sneaked a lok at our program).
This time Sturla answered he looked at his T shirt and as it was quite ordinary and sported no special features, he thought for a moment and said my T shirt is like this. (Good job)
It was good but it was to slow, his skill in this particular program is still not fluent enough and I wonder if we have been going too fast reveling in new and new things not making the old skills fluid and truly usable. Skills have to become a part of you before you truly master them. They have to be like old shoes part of your feet so you do not feel them when you use them. One has to be able to act almost without thinking, that is a natural response.
I wonder how to address this and I know there is no shortcut I have to slow down and bactrack to generalise, already learnt items. I have to do more environmental teaching and more problem solving activities. And I have to make it into some sort of a organised schedule to know what I have done and what needs more work and so so on.
If I do not organise it all to the smallest details I freak out I have a love hate relationship with binders and folders. I have to much on my mind and just knowing where and what is on my laundry list calms me better than any drug.
Four year olds are funny, they go around and exclaim to the world facts about themselves, wanting recognition.
Hi world I exist.
It really boils down the essence of all human interactions.
This is what I want.
Hi world, I exist and I am prepared to take my place in life.

Sunday, July 25, 2010

Enjoying the good stuff

The last month has been very unstructured due to many reasons and I feel both relieved and sad that playschool starts again on monday. Relieved because therapy will start again and his teaching will be resumed and sad because I miss the leisurely hours and regret the fact I am incapable of dooing all the work that needs to be done on my own, I have tried and failed.I need other people to keep up his hours. I cannot let myself burn out and I need a break. Summer is always a good time for change and the change is scenery is dooing him good he has been camping he has been in resturants and he asks his brothers and cousins to play, they in turn need to be prompted and pushed to oblige him. He can not follow their complex imaginary playing. Still the progress is obvious. His interest is steadily increasing and watching him at the breakfast table this morning as his little cousins spent the night he was happy and imitating the sillyness displayed by allt the five little boys that sat around him. I am glad that he is so obviously trying. He loves dressing up and just now brings me his batman costume. He greeted me this morning with a wig and a fake nose "look at me".
Yes, I am looking sweetheart.
In fact I cannot take my mind of you at all.

Summer outing

Look at me!

Happy block building


Enjoying his brothers birthday party. He loves birthdays.


Musical session with dad.

Thursday, July 22, 2010

lovaas advice to his therapists

this was posted as insights from UCLA on Lovaas Institute Blog

1. Concentrate on positive reinforcement. If it isn't working, you are not thinking or sweating enough.
2. Students do not fail to learn. We fail to teach.
3. Have fun! If the teacher is not having fun, imagine how the student feels.
4. Step outside the box sooner rather than later. Keep moving and changing your strategies. Good therapy should never feel comfortable. The therapists/instructors should always feel challenged to do better. "Good" is never good enough!

I better get back on track and bear this in mind. The lovaas study has flaws certainly and all this autism business is as floating and evasive as ever but the bottom line is children can learn adults can learn and so can I.

Sunday, June 13, 2010

The steep winding steps of yes and no

Sturla still has trouble finding the right answer to simple questions even though it requires only a yes or a no.
Was playschool fun today? Blank
Is your name tooth paste?
Is your name smurf or telephone or banana... Answer will be a certain NO accompanied with roaring laughter.
Glorious as I remember the first sessions and the frustration of teaching him to answer and recognize his name.
Are you a hundred years old. OH so funny, NO ( still no idea what a hundred is)
Are you four years old. a grave determined Yes.
Are we at the moon. NO... bit funny still...
Are we home Yes.
Then we read at bedtime. I try picking out books that I have some relevance to his program and I ask him and retell in a way that is not beyond his understanding. As we are somewhat mastering the world of yes and no I ask stupid silly questions determined to keep the therapy going until we fall asleep. And he answers obligingly yes and no and yes and no smirking now and then and yes and no and so it goes.
I point to a picture of a playschool teacher singing and playing the guitar and I say look she is swimming. He looks at me with laughter in his eyes and replies. No she is sleeping and rolls laughing on the bed at his own joke.
I can not get a single yes and no out of him after this.
He has mastered the joke and is laughing himself silly at his ingenious answers.

Thursday, June 10, 2010

Curriculum update.

Finally we got our meeting, a fast paced one hour, crammed with lets get it on, and what is next, use short sentences and be totally direct kind of meeting.
I like direct and I like let getting to the core.
I just do not like this kind of stress where there is no room for even the smallest kind of social greasing.
On the other hand the next meeting has already been scheduled and then we get a whole hour and a half.
Oh my. We might even get in a nice to meet you.

So what are we working on.

Games: We are teaching games that are common and much used at the play school stop dance, Simon says, picture lottery. We work on at least two simultaneously.

We have mostly finished the chapter conversation intermediate from the book a work in progress. All but phase four.
We backtracked a little and went to conversation basic and are teaching mands.
Sentences like.
I got it first.
I got you, in playing tag.
Now you, now me. And more of that same sort.Practical phrases that are used by his peers when playing. We listen and learn from them.
WH words. We need to drill in the undrestanding of all those words before teaching him to ask questions and we had to put the memory program on hold as he did understand the difference between those words. I think it will take a couple of months to make this fluid. Probably until fall or even longer.
Patience on my half.

Imaginary playing is coming along nicely.
We have divided this into two programs. One goal is to increase the length of time he can focus on playing with other kids that are about a year younger than him. His play skills are closer to them than his peers. He can play with them without to much assistance for short periods. Very short.
The other half is playing with his own age group and make scripts and hand out predetermined roles to widen his repertoire and increase his skills.

Counting is making me crazy. He can or I have the feeling he can and just does not bother. I gave him a glass bottle today and he liked the sound when he dropped the pieces he was counting and suddenly everything was correct. Be fun, be fun, be fun.

What is missing. Done.
What is strange or wrong in a picture will be put on hold. He knows the key is missing when the door is locked and a general sense of the environment has increased. Mission accomplished I guess, for now at least.

Personal pronouns. This is a hard program to teach. Mine and yours have four conjugations and three genders existing in both singular and plural. It all rhymes. We are backtracking and dividing it into smaller bits and special programs. I feel as if we are running around with one bucket as the roof leaks in five places.
I hope we can brush it up fairly quickly though as we have been working on this program for almost three months.
Shows how necessary it is to know exactly what you are doing there is no fun in wasting time not for the therapists and certainly not for the child.

What does the doctor or fireman or whoever do... this is fun and goes fast. I love programs that go fast. I gives him tools to use in imaginary playing. Now when he puts a hat on and declares that he is a cook he also knows the basic function of a cook.
The power of knowledge

The last program is teaching him to answer his name in all,well not all as no one ever answers everything always but at least most of the time with the words yes or some acknowledgement that he knows and recognizes that his attention is being sought. This will take time.

I hope that at least three of those programs will be finished by the time summer vacation starts in two weeks and during that time I will focus more or less only on maintaining learnt items.
Play school will start again in late july and then we will resume the same pace. The four weeks playschool closes will be light in therapy time. I am incapable of keeping the same pace going on my own so I will just focus on generalizing playing and perhaps see if something was missed in earlier stages.
We have finished the beginners curriculum and are now getting well into the intermediate stage. I am somewhat pleased with the pace. Yet i always think of what could be better, faster,smoother.
Sounds like a sports car. Wish it were.
We take steps backwards and forwards and some habits are very very hard to break. Echolalia comes back now and then and I wonder when will that stop.
Hi Sturla is echoed with.
Hi Sturla and I model again and again.
No, Hi X or Y or whoever...
He still paces quite a bit and now it has increased again and I wonder why.
He teases me a lot runs and hides and says NO..
He answers wrongly on purpose and laughes hysterically. He refuse to come and sit he demands other kind of reinforcement, this or that does not please him now..
Sometime I just do not know, should I laugh or should I cry.
But he is happy and such silliness and wonderful sense of humor.. it is quite hard not to laugh.
When to be grave and firm and when not when is the silliness out of hand...
Oh blah blah
I will opt for the silliness, at least for the summer.

Wednesday, June 2, 2010

Happy times

We get the meeting next week...
Total relief

That is not the best part. The best part is a boy with blond unruly hair and green eyes. The one that asked where his brother was today. The one that humors his mom when walking and imitates her steps, stopping, going lifting his leg, jumping a bit. The one that decided the dressing closet at our local swimming pool is a shop and that he would buy chocolates and sweets. The one that spoke to his dad on the phone today and asked him to come home. The one that found his mothers shoes on the shelf at that same swimming pool among dozen of others and put them on her feet and then tried out a handful of other shoes almost like Goldilocks, some were to big others were to small, and then he found shoes that he liked and when mom said no they are not yours he said they were better. Better!!

There, I did it. I did not feel like working and neither did he.

All in one day.
Happy times indeed.
And the roller coast ride continues.

Tuesday, June 1, 2010

Now I know

Now I know how my son feels when I have been drilling him for hours. Exhausted. I have started teaching an as I have never taught before I learn as I go along by observing and by trial and error. My head is exploding with information and now I get it when my son says, no! I do not want to work.
To me that translates actually as. "mom, you have to be more fun so I do not feel like I am working.

We had a drama. It happened like this.
I went for a work meeting. It was postponed.
I went home.
I meet my daughter. She says the meeting with the ABA team was postponed.
I think Oh no. And what a coincidence. Two meetings in one day get postponed.
Turns out she misunderstood the message, the message came from my employer.
We missed THE most important meeting. The meeting to discuss my son's program.
We will probably not get another one.
What angers me is that I was available and could have been there in five minutes if anyone would have cared to call....
I was crushed.
I got depressed. I went into the no one cares depression.
I felt the sky collapsing on my head.

This is how delicate the balance is I need hope to be happy I need progress to have hope and I need a really really good program to have progress. I need directions.
So, so many needs.

We have waited two months for this meeting and now it looks like we will have to wait three more.
Summer vacations.
Only autism does not take a break.
Time does not take a break and three more months is a very long time.

I am angry again.
Perhaps it is desperation.
No, I am furious.

Saturday, May 22, 2010

Environmental factors and then on lighter notes

Anyone worried yet?

A few lovely moments on a laid back saturday.
My son did notice that moms do not have wee wees. I find this so delightfully age appropriate.
Totally fitting for our what is missing program.

Playing jingle bells on a rusty squeeky wheel, just blew my mind. He sings all the time Bob the builder is an all time favourite and l´homme arme by Karl Jenkins.

Funny kid
Great taste

Thursday, May 20, 2010

Accepting the roller coaster ride.

No one said it would be easy. It is not.
No one ever said they would fix it. They can not.
No one promised anything.
Everyone is wary of the word.
As if hope does not belong in the autism world.

As I know before there are just two ways, keep going or give up. The latter is not an option.
So as I climb back on my horse to continue the ride and I promise myself again to laugh more and enjoy my life.
Accept the uncertainty of the future.
The future has never been fixed anyway.
So whats the diff.

I continue where I left off doing what has to be done the right amount of hours in therapy the chores and raising my kids. And if anything is not done well enough it has to be made better. Just like that.
Oh so simple.
Just plod along that road....

As I sort through all those emotions it gives me strength that my feelings are not mine alone they are shared by all the others dealing with the same.
Hope is our fuel.

Hope, reinforces my efforts.
Every progress we make, every little bit my son learns is a drop in my fuel tank. I see progress, sometimes even big strides.
I am greedy and tear at my hair and ask are those strides big enough?
Is progress fast enough? And fast enough for what?
Perhaps it is.
Perhaps not.

It takes a long time to raise a child.

As important as it is to look at the hard facts and the numbers and percentages it is equally important to remember, there is always room for improvement for progress there is a way...

Doctors give little hope and there are endless argument all over the internet. Cure recovery, improvements it is only semantics.

Yes it is a rough ride.
No one lied.

I will soon have a PHD in flexibility a MA in swaying and bending and a doctorate in multitasking.
It is OK.
It is worth it.

Sunday, May 16, 2010

Getting back on that horse again and again.... and oops I fell of again

It happens regularly. I burn out. I loose my temper and I get stuck on details and forget the big picture.
Is there a remedy for this?
I loose myself in a stupid temper tantrum fit for a three year old.
There is nothing to do but get a grip and get back on track again. Forgive myself, undo the damage and start over.
Tomorrow is another day and the afternoon is inviting.
Breathing time.
Personal space.
Funny.. whenever someone asks me if I am taking care of myself and having some me time I get an urge to punch them in the face.
I know, it is not a nice urge.
It is not a nice thought.
The worst thing is they are right. That alone is of course a good reason to punch people.
It does not benefit my son or let alone the rest of the family if I am removed in a strait jacket.
So here I am breathing. I am not working on anything for the rest of the day and I am off to the blue lagoon.
Oh well.. we are all going.
The whole happy bunch mom, dad and five kids. We will leave the cat though

Not a care in the world...
We have got coupons...

That smoke in the distance is me cooling off.

Thursday, May 13, 2010

Imaginary play.

Yesterday Sturla sought me out bringing a little kit of cups and dishes.
Mamma. Do you want coffee.
Yes please.
Then he laid out dishes and cups and prepared our little party.
I was so astounded and happy wanting to share the news so I called my daughter who was down stairs.
Look , look what he is doing.
As soon as I called her name he stood up from his game and ran to the stairs.
Sola, Sola do you want coffee?
Then he laid down a cup for her and a dish by the side.
Can we have cake? we asked and he opened a can of dough and gave each one of us a piece. Spooning the stuff into our mouths and laughing at his sisters face when she tasted dough.
Oh this is disgusting, tasting it himself, making a face and laughing.
The sequence of the game is learned. The use of dough and laying out the table.
But seeking us out and adding his sister to the game is all his own idea.
The initiative.
The joy in playing.
This moment is to remember.

Wednesday, May 12, 2010

Ramblings about creativity and plain old skills

The first time I heard of applied behavior analysis I felt a kind of repulsion. Mostly by the word behavior. The idea that behavior had to be modified. My kid is not behavior, he has spirit and emotions. He should be who he is. Whatever that is.
It took a while to overcome my first impression and figure out why I had I this feeling.
First I realized I had some vague ideas floating in my head about the human spirit and free happy children figuring things out by themselves, while they picked flowers and speculated on the cosmos. Playing and learning as well as creativity was in my mind all woven together in some fuzzy romantic idealism. Put that together with the the ideological child and hen try to fit it around an autistic child.
I does not add up.
I will give that to my son, that he has pushed the boundaries of my comfort zone.
Physically and ideologically.
So we are not all happy hippie children.
Some of us actually need structure to get the hang of living.
I could not let him be who he was. He was not happy and he definitely did not fit my profile of the free joyous spirit child. He was uninterested in most things, aloof and plainly had no idea of how and when he ought to do something, even things he actually liked. He seemed agitated and afraid.
When we went to the country side the car had always to be in his sight.
He did not like new swimming pools.
When winter came he would not change his coat or wear warmer shoes.
He mostly ate bread and bananas.
I could go on and on.
This just did not fit my idea of a happy life. I compensated and had to be very creative to figure out how to keep him calm and at the same time parent my other kids who wanted to do stuff and figure out hings for themselves.
I put my idealism aside and immersed myself in the behavior stuff. What I found out and should have learned long ago in my art studies is that creativity and flexibility has a lot do do with skills.
It is not seldom that I have had to put an excellent idea aside because I have not had the necessary skills to execute my idea. I am a lousy carpenter. I do not know how to work iron and I am barely adequate at making casts.
So my ideas tend to be linked with what I know how to do. I make collage and drawing and paintings I never photoshop because I am bad with computers. I put a lid on my creativity all by myself and refrain for pushing the boundaries of my comfort zone both because I am scared of doing badly and because i have no idea of how to do it, besides getting ideas in an area where you lack the necessary skills is quite impossible.
The know how leads your mind forward.
I taught Sturla to draw and in the process I saw that the reason his drawing were so immature was that he had not figured out that forms could be put together to make a new forms or figures. First we did only imitation.
Do this, do that.
follow dots. et cetere. Absolutely boring, and I needed to get him through the basics with treats.
Then we combine forms and that is more fun but sill imitation and do this and do that. The day I got the aha moment from him is a day to remember. The day he figured out that his lines and forms could make something from his own mind. The day he made a drawing that was not an imitation from me but an idea from himself. A car like he had learned to draw but with a steering wheel all his own idea and a figure in the car, his dad driving.
That is when he was capable of being creative. He was no longer stuck with his little stick figure made from only two dots and three lines.
When I was in school there was this strong postmodernist trend that art was all about ideas and there should be no boundaries between the departments and skills were out of fashion, the free flowing mind should, well flow freely.
I say that if the mind is a river. Skills are the river bed.
And as in nature one affects the other.

Tuesday, May 11, 2010

Autism is everywhere

On saturday there was a festival at my sons school. First the kids tidy their surroundings and then they have a party. Nice, only we skipped the cleaning part and just had a party. Even nicer. Sturla and I had hours to catch up on, no time to tidy up in the school yard.
We went for the hot dogs and jumping.
He saw a little boy and pushed him around, I missed the actual pushing but became aware that somthing was not right as the father was upset and shocked by this unruly child. Now that Sturla has increased interest in other kids we get into more conflicts.
I made excuses for my son and felt compelled to explain the reason for his inappropriate behaviour. The father looked at me astounded and said. My son has autism too.
His son was diagnosed a week ago.
Monday there was a little celebration in my eight year old sons class. One of the mothers sat beside me and it turns out she works with autistic children.
Her daughter has low muscle tone and some delays and kind of obsessive behaviours she will be diagnosed later this week.
Everywhere I turn something turns up.
I went for a job interview. We knew each other form before my new boss and I so we chatted far and wide. Her son has ADHD, so does my eldest. ADHD and autism are related disorders.
I am getting paranoid.
Any one heard of grashopper effect.
The thing is, apparently all the chemicals in the world slowly end up near the ice caps at the poles. They move, rise with heat and travel and then settle down again in colder atmospheres.
I am scaring myself witless.
33 children in Reykjavík alone have been diagnosed with autism since january.
Gosh, we must be getting terribly good at this diagnosing business.
I thought a lot about this few months ago and then decided to let it go it is far to time consuming, and burns up to much energy to worry about the environment in this fashion.
But its creeps back.
We can have a whole new twist on the mercury autism theory with grasshopper effect, we do not even have to say the word vaccines.
I find it really hard to let go thinking about this.

Wednesday, May 5, 2010

The knight

in the high castle

branding his sword

at a concert

wearing the superman outfit


He lost focus when he saw me with the camera. He had been doing so fine and his brothers were just perfect with him. It is late in the day and attention span shortens as the hours increase. I try to keep the distance between the children relatively short , otherwise both ball and attention can go astray. And lol it did.

Sweet spring

Finally, the weather is changing and so with it, my mood. I adore those rainy spring days. I have not worn my red polka dot raincoat in months and now nothing else will do.
Sturla scrutinizes my attire and approves. He touches my lips and is happy that I have put on lipstick. Then he brings me a pair of earrings.
He has an eye for detail.
He himself puts a crown on his head and with a terrifying sword decorated with skulls, he is ready for playschool.
He is a knight and the king.
I am the polka dot queen.
The trees are dripping wet decorated with silvery raindrops.
The frost is gone and I can smell the earth.
We are ready for anything.

Tuesday, May 4, 2010

minding the future

I realise more and more how my child becomes a measuring stick to almost everything. I compare him to others, autistic children and neurotypical and think how he is doing in comparison as if I can measure his progress and future.
I look for things we are doing well in and what needs more.
It is a calculation game.
I play an oracle.
Somewhere I hope to find the answer of how he will be in the far future. The one that is so far away that my live will be almost over, at least I will be legally old when that future arrives.
I do not want him to rely on strangers.
Four siblings.
Let us hope it will never come to that.

There are six children with autism in the little school my six and seven year old attend. I stubbornly hang on to that small private school even though we really can not afford it because I know the autistic children there are being taken care of at least it is so at present, that may change with staff.
They are getting an education and there is an active effort in improving social skills. Those kids are all what you would call high functioning.
Then I calculate, will he be like that?

Can he...
Will he...

When we drive to school I sometimes see a man and a boy standing and watching the traffick. The boy makes some repetitive movements that I have come to recognize. The man holds him tight and the boy stares mesmerized at the traffick.

I think of my friend and her son who is now nine and how he asked his mother at seven. Why am I different? And she told him and he cried.
Self awareness and understanding of oneself.
Still he can not ride his bike in traffick.

And I measure it on my scales and wonder, what and how.....

Staying in the now.
Reeling in my mind.

I pour all that effort into the present in trying to improve the future. The quality of life is still in the present and it will always be right there.

Saturday, May 1, 2010

Put the crocodile in the toilet.

What I meant was put the crocodile in the (bathroom). I was doing a memory practice using his new vocabulary with places and rooms.
Then we wait and do something else.
Where did you put the crocodile?
OH well
Into the toilet of course.
Wet dirty crocodile.
Apparently New york is not the only place on earth they flush down crocodiles it happens in little Iceland as well.
We are so utterly cosmopolitan.

Friday, April 30, 2010


"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.

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.
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