Friday, December 16, 2011

Surprised at myself ... or not

So this is the way it has been.
After several days of a bad cold and flu Sturla refuses to go to play school and me being so far from happy about the way things have been going have probably been reinforcing that attitude some way.
Anyway.
Looking at the stupid uniform makes him scream. I would love to scream too.
So I called... and said ...Houston we have a huge problem... and not a new one.... a reoccurring one and this time it gets worse and now iti is really bad and now you really have to get up and plan and do something...
haha and then I made a plan.
Play school is fun and i want my son to have fun.
So dear teachers you have to be fun and reinforcing and come up with ideas.
I wrote social stories. play school is fun blah blah blah.
I feel like I am lying to him....
You have fun doing this and that blah blah.
The first days went Ok with only minimal resistance and there were activities that in themselves were interesting enough.. a ride on a bus and dance around the christmas tree.
Today was another thing. They have this gathering on fridays with the whole school nearly 90 children and then staff. They somehow do not quite make it fun enough and not only for kids like Sturla but several others with attention spans on the short side.. So I heard a lot of be quiet, sit still and so on.
It annoyed me to no end.
In the end the children danced to a fun song and most of the staff sat on their butt. I danced with my son and when the song was done I walked to a young man who sat ever so comfortably on his behind and clapped my hands in front of his face...
why are you not dancing with the kids? I hissed.
Then I walked over where two of the therapists that work with the three autistic children that are there and hissed again.
I did get some shocked reaction.

Then I made sure my son was happy to go with E and his therapist and play.

Next step is a huge complaining meeting with all sorts of people in the first week of january.
Fun fun fun

Sunday, November 20, 2011

Birthdays

I come downstairs this morning.
Do you know who´s birthday it is.
no reply
he is watching tv.
It is M(a boy in his preschool)
no reply...
sigh

Still a couple of hours later when we have started our working I ask again.
There is a birthday today.
Do you know who it is.
It is M... he replies

so he heard me...
glad he did
sad he did not reply

So now he is off with hubby...
I bailed
could not stomach this one.... been there before... typical birthdays....
Hope he enjoys heimself and hubby brings home pictures we can talk about.... I just could not handle other peoples eyes today.
The question that hangs in the air
I have no intention of explaining anything to anyone.

I will not deprive him of a social outing he enjoys. Just because of someones looks. So glad there are two of us.
So glad indeed.


Since last winter things have been slow and victories have been far between...
something happened.
I have blamed the play school
still do
now I blame myself as well.
How can he be happy when I am not

The therapist the play school hired quit before she started.
Square one again

Waiting and hoping that someone will like teaching that my boy will get to know him an love him.

It is unacceptable that he does not get his therapy time for three months as has been the our situation.

It is my responsibility to see to that he gets what he needs... and what the others will not do we do at home.

I have no team of ABA therapists marching in and out of my house turned out we could not afford it and even if we could they are as rare as white ravens...
it is just me and hubby... trying to hold it together.
Keep our head above the water.
Pining for progress.
Dreaming of a future.
Trying to remember that happiness is a state of mind.
Or a state somewhere else

Sunday, November 13, 2011

video modeling

I have only just begun to see and understand how video modeling can teach play skills.

What we do is make short scripts and play themes we want him to learn his brothers act out the themes and when the sequence is learned and several others in addition we encourage his playmates to use the learned sequences in other settings with other toys and in longer play sessions.

We have already taught scripts that include cooking,
making pizza and disgusting food and tasting food and calling in animals to eat.
We have made scripts with doctor themes both with puppets and acted.
We made a Rango game
pirate game
Animal games
Driving cars
Fishing and camping game
Taking the bus game.
Shopping.
Dragon and eggs game.


We make at least two versions of each sequence and often more than that ... I do not want him to get stuck.

I have already seen how overlearning can occur and that makes him rigid...
and now we have started to try and get him to use bits and pieces and stringing them together as he pleases... more like normal play.
This we began just this week and some bits and pieces find their way....

We will continue to add themes but focus on the length of the play session as well and how many ideas he comes up with.

I intend to use video modeling for other kind of social skills... and the beginning looks promising I just have not had the time to be systematic enough...

I guess I will just pick out the skills from Making a Difference. Getting starting this week....

The ipad is a magic tool for this ... so easily portable always at hand to show the videos and then just put him in the situaltion we create and... voila ( almost)

Making scripts and data sheets for the scripts are a lot of work... but it works... works great

The wonderful thing about this all is that the teacher can back off... lessening and deleting any prompts.

That is a huge relief for us both.
Me and him and him and me to eternity... we both get tired.

Tonight I sat in my sofa hoarding the ipad and just pulling the reins a little bit and watched my sons play for more than an hour... the older ones playing in shifts to get computer time upstairs and my little one laughing and enjoying himself....
Sometimes he chooses which games are played sometimes his brothers and then the butting in queen sees to that the certain games get played and taught.

Works wonders.

Friday, November 11, 2011

Current curriculum

Say versus tell. Finally over...
both begin with s in Icelandic are two syllables and end with u so auditory processing problems... blossoming.
This took a while
Next step is when to ask and when to reciprocate and then.... I am getting excited conversation....topics

We are still doing perspective practices no surprise....
working towards that seeing leads to knowing... and someday towards judging whether someone else knows or not and all the many little steps in between...

Time concepts... still there... we took break and started just up again.

Clues to the whereabouts of objects ... two clues with prepositions are now mastered and I think that more is overdoing it
... three clues have been put on hold.

Instead asking him to hand me objects and counting like give me two dogs and one candy.
It is not the most fun kind of practices but I can see how it expands his language processing.
We put this on hold six months ago but now he is ready.

Pronunciation... Never ending story... some improvements indeed... lots of work ahead.

Reading... fluency improving... comprehension coming up.
Wh questions from another angle and doing it again... he can do some but not fluently enough, and some are still missing.

pronoun confusion... We did the pronoun programs and he gained some understanding of them but he is still mixing them up....So for perspective practices and lots of other things we really need to clear up this misunderstanding. I try to teach it through games and activities. We are dressing up and looking in the mirror and so on.
Generalizing

Video modeling and games.
Starting to to implement learnt sequences and themes to more dynamic settings ... encouraging his brothers to use the video sequences in ordinary playing... He needs to spend longer time playing and add more ideas to the game. It is coming along.
His brothers are the ones that teach him. He is lucky to have them.

Structured games and activities he takes over to the playschool.
Drawing and play dough and legos and more...

And the new all time favorite the piano

Sometimes
I watch him as he is drumming his fingers on the table and he seems far away in his own world but his fingers are practicing the music he has learnt.
Preoccupied...
Not lost

Friday, November 4, 2011

Thursday and friday

Crazy pace caught up with me...
Called our consultant and she was kind so I cried.
Hope she does not give up on me as well.
I am impatient.
One therapist for three children was what blew my lid off.
Trying to be all the team that was missing.
Be it all.
I am his mother... I feel that is what I am supposed to do.
Just need to stay rigid and stony faced or I crack and I did and I will again there is a pattern.
So what does humpty dumbty doo.
bo hooo hoo
Put myself back together again.
Sleep a little.
Cry some more... get a headache and start over again.
This is not grief over my sons condition this is just plain tiredness.

They hired some one at the play school so next week he will be back on track after three weeks of something somehow and me driving myself nuts.

Thusday there is piano...
Starting to love those days...

Friday was off from work... a break... what are whole two hours for.
I read the paper... true story.
Then I got a visit from a friend and a neighbour.

So two hours flew...
How are you feeling she asks.
It cracked me up... I have no idea... we laughed.
It was nice.

Saturday, October 29, 2011

Saturday and sunday

We wake up late.... all of us.
What was I thinking letting the TV drone on and on until eleven with all the boys up... we all cringed over the hollywood version of Thor the thundergod.
Those are our stories.
Jöri yelling this is so stupid every five minutes and Sóla backing him up vehemently.
They were right.... as much as I like action and fantasy and fiction this was utterly stupid.
Still the change was nice and we laughed... cuddling up with our blankets and Sturla half asleep in my arms throwing his soft arms around my neck never finding the right position. Exclaiming that the action scenes look like computer games... the highest praise he can give.

I just could not work much with him yesterday. I had phonecalls to make and complains to deliver and other fun stuff.
I called an independant organisation that advices parents and offers help in meetings and such and I called because we are having a situation yet again with the playschool.
Now he has only one therapist ( they seem to have a tendency to get pregnant) and he gets about two hours a day... which means I rush from work as soon as I can and try to be energetic and focused for at least five or four hours working on his programs every day. I keep him in play school for about four hours. We pay for eight so as to get six to five hours therapy time a day. The play school never delivers more than 15 a week.
I also pick up my other children and to what needs to be done until my dear hubby comes home then we switch roles he makes Sturla read and play the piano... it is a relief as he is taking over certain programs. We cook... there are intstruments to be practised and homework to be done. The day is long for everyone.
The play school has not once discussed the fact Sturla is not getting what he needs and the only remaining therapist divides her time between three children. as well as having the responsibility of informing parents about the situation which is indeed grave. She does her best... but this is to much for anyone.
Sure they are hiring... but it has already been two weeks.

The lady I called asked how I manage.... I could not answer suddenly there was just a lump in my throat and I felt drained. So drained I could not do more that day...
there was just pizza and candy and a film...
no one complained.

She will attend a meeting with us with the playschool... I am relieved. A third party.. a neutral zone someone to take the heat
...someone experienced... to get and keep the conversation on topic... that is the needs of this child.
We will talk about where responsibilities lie. Who should take care of what.
Because I do not like the idea of dicussing organisational problems with his therapist.
I want to concentrate on him and only him
We have other things to think about...
I am sick of complaining and arguing and checking and double checking only to find out that all is not as it should be...

We worked a lot today though... making up time
staying at home the whole day not going out except to shop. I needed to get certain things we are working on somehow under control and... structure, besides we are inviting family over tomorrow to celebrate his birthday and then there will be a lot of action and unstructured time.

We lack six hours this week...

It is easy to measure time...
what it says about the program is another story...

Tomorrow I intend to give the house a look alike cleaning bake some cakes and...
give a birthday party...
somewhere in between I hope to cram in those left over hours
I am a robot.

Wednesday, October 26, 2011

language and gadgets

Ipads computers and smart phones are the all time obsession around here...
I really do let myself get lazy thinking of reinforcers these things are just so handy.
Though not exactly fulfilling the social part.
I have been waiting for other obsessions to emerge but nope this is it....
Angry birds and that alltime horrible niam niam cat.
Have you seen it .... repetition par excellence.
I am striving to increase other interests and though he exceeds all expectations in playing computer games I am already thinking... how will he be independant and make a living...
I refuse to look the other option in the eye...
I am also presuming we will overcome at least this great obstacle ...language
and hopefully make some social gains as well.
Music is a possibility... computers... perhaps if he will learn other things than playing games.

But I always come back to language.... and abstract thinking .... and understanding abstract concepts.
What sometimes lifts my otherwise too often gloomy mood is that I have noticed how my students...grown up people with ordinary and normal language skills struggle to understand those concepts as well when there is no middle language to explain it in (like english).
It can take a few days or up to weeks to get the meaning of some concepts even though they already have a name for it in their own language.

A student who can tell me he likes coffe and chocholate cake in the classroom... is not always able to do so at the coffee house.
Generalisation is hard for grown ups too.

Sturla learns language very much like a foreigner would do... except he does not already have a idea for those abstract concepts I am teaching him... and we have no middle language to refer to... we are stuck with this one...
He has to create an abstract idea in his mind and label it.... this is a true feat for a child whose innate language system is broken.

This goes so slowly....
and for time concepts that I am trying to teach, it seem to drag out forever and ever.
I realised the other day that he has a very limited understanding of the verb ...know...
He can answear I do not know in certain situation but still he does nor understand it fully.
Do you know what is in the box? He answears randomly yes or no.
Showing him closets and drawers of which he actually knows the content and i still get random yes and no... sigh
So make a list of verbs with rather abstract meaning and teach it one by one... I guess....
Patience
one teaspoon at a time

Thursday, October 20, 2011

Happy birthday.

The sixth year has begun and nothing changed...
Six years since that amazing homebirth in the bath tub.
Six years since you were born still wearing your whitish womb gown.
Six years since you came to this world so softly you seemed to be born asleep.
Still you scored ten on your apgars.

There is no Eureka
... or disaster looming.
No bell tolling
no new beginning
it is just a day
an ordinary rainy autumn day

We are just still here.... and there working and working....
The only thing that has changed is that I have stopped fighting my mind.... I am resigned to do this if necessary for the rest of my life.
It takes a lifetime to raise a child anyway...

I am not always easy on you.
I make constant demands.
This is just the way it is going to be....
I am sometimes sorry ...but I will not apologize.
I am determined to make you independant.
Self suficcient
I want you to choose your life.

We are making progress.. I know that.... but more is needed.... oh so very much more indeed.

But this is a day to celebrate progress.
Your reading goes fast... an easy thing to teach.
Drawing skills are amazing you have spatial skills and think in maps... as you draw complex pictures that look like an aerial view. You are a computer wizard mastering any game and toy.
You a have a silly sense of humor and laugh easily. You read my face and are aware when I am sad, mad or happy. You draw facial expressions.
So many strenghts to celebrate.

We went to the store yesterday and you picked out your favorite cereal... the most disgusting sugary stuff you could find..
That is how your birthday began with sugary snowflakes.
You dressed quikcly and without prompts or assistence and you were out of the door before I knew it. Ready to start your day at playschool.
Quick so you could get your reward.

Can I have the ipad in the car.
Sure...

The ipad works for many things.
A teaching tool a reinforcer and a prised object to use in hide and seek interesting enough to bother too look for.
I intend to milk every drop out of it.
Every single one.

I picked you up and we went to buy cake,
you picked it out at the bakery, you were quite sure it was this one and no other...
and then we went to buy a dvd
you asked for it as birthday present.
Rio the peacock picture.
Quite decidedly.

your thoughts your mind your decisions

last year it took over a week to change the answer to how old are you ... now it was only about ten trials before you answered correctly and consistently.

We are not working much today. I am letting you watch that dvd in peace. Enjoying the peace myself.

There is piano on thursdays...
How is it going? I ask the teacher.
And she gives me what I want...
He is amazing he is already mastering what most kids (typical) or at least some of them master in december and ..... she adds, he started a month later.
I am so happy with the compliment she gives him... I can almost taste it.
I sun myself in the praise...
I beam and I glow with pride.
I am vain...

And I want to cry as well for the hope she gives me.
I constantly think of the future... ten and twenty years ahead.
What will be....
Hopeful.
Promises.
Shifty future...

And when you come home you walk to our old piano and play the piece. You use both hands...
Such very small hands.

What will it hold for you.
green eyed boy

And then I make you work for an hour...
just an hour today...

It is a special day... this rainy autumn day.
Happy birthday.

Monday, October 3, 2011

Time time and time again

Time is the essence.
I do not have it
I regret every minute I am not focused... I regret the time spent sleeping... eating.
It is madness I know it and accept.
I cannot look him in the eyes and do otherwise.
Wasted time.
I do my work ... teach and come home... and prepare to teach my child.
The dreaded year... six years old..
dreaded because I see his peers walking to school with their schoolbags.
I see them through my kitchen window and look away.
We are still here battling time and lost milestones.
Sorrow is time consuming.
Our battles are long and every victory is hard won.
I will not leave you behind.... I promise you and myself every day.
Regrets are not on my to do list.
Language is.
Eye contact is
Communication is.

Crazy one track mind set... I am like those wind up toys... If I stop hesitate or think I will not get up again.. so on we go ahead ...
every day
one by one
teaspoon by teaspoon
because that is the way to build a mountain and swallow the sea.

We have started using video modeling to teach play skills as well as social skills.
We are still in our infancy with this teching method and making all the material ourselves as there is nothing to buy ready made in Iceland.

He started suzuki school, playing the piano and finally... finally something that comes easy. the boy has rythm he has a sense and an ear for music and he will outperform me in a very short while.
I am a beginner myself, but i do not have the ear the rythm and the sense for it.
I love it. I adore it and I cling to it. The joy of seeing him master something easily
Here he will keep up and most likely outperform his peers.
Someone else will have the catching up to do. Not you.
This time it will not be you.

Saturday, August 27, 2011

Summer... ending

Where have we been and what have we done..
too much and too little as always.
Play school has started up again and things seem to be improving. At least I sense a willingness to make thing better... still they do nee a lot of help from the consultant I hired to help us. This is just how it is over here I guess.
Even if I had all the money in the world I would have a hard time finding the therapists.

Our curriculum.
Reading: he just finished sounding out the letters and has started... though haltingly to sound out the words in the books the first grade uses for reading.

Finding objects given location clues: we had to back track, we were not doing it right.

When: questions are beeing repeated. Hopefully he will now master wh questions fully. I hope to be able to do reading comprehension with him by christmas so we better do this right,

Conversation : Sustained eye contact has to be mastered until we move to discussing certain subjects.

theory of mind: I can not see what you see... we are beginning at absolute beginning according to the books I am reading. I have to learn this as we go along... so if anyone has clever suggestions about games or books. The goal at the beginning is for him to understand that different people see different things... that there is such a thing as a point of view we see smell and feel different.

play stations and play themes and chains.
look at what he is doing.
passing objects to peers.
giving eye contact
answering suggestions.
bringing complexity to the game.
making suggestions.

the list is endless it seems

Be happy and play please ...

play book.
varying projects
using a clock to time open ended projects
school assignments.

The summer flew away so fast
camping and climbing mountains is now a very much preferred activity.
Wish we could camp out always... every night... sleep and wake up to the sound of birds and the smell of sea.

we drove to the west and saw seals and foxes ... we met some humans as well.
I was anxious as I could not do any work.
stupid stupid anxiety

Anxious because I planned to leave for a week go by myself to Paris with my daughter.

I did go and it was lovely... bonding and laughing talking and walking silently.
I watched and walked breathing in the big wonderful city. My first true vacation in many years. I did not know before how much I needed this. I thrive on the visual and I was very thirsty.

Paris is the only city I know fairly well and yet it is so big it is impossible to know it at all. My french rusty but usable for our simple needs. We talked about the boys at home and that we wanted the to see what we saw.
It rained every day but it did not matter.

I think I found some balance again some understanding of my limits.
Perhaps some understanding that I need a break now and then to be useful to my son.

And now it has all started again schools work play school and I hope for the best.
I want a good winter.
Progress

I want to fly somewhere.





Saturday, July 16, 2011

Cats and Dogs

video

...what are you doing with the cat...
I am holding the cat...
then he gets the idea of making the cat climb the tree as it had been doing a short while earlier.
the cat has other ideas.
as does he...
the cat might be going to playschool ...and no it does not wear a uniform.
it might be going for a visit and then it might want to be superman... who knows...
He firmly tells the dog to shut up ( he always tell barking dogs to do so) and decides to come and say hi to his father who just arrived.
Then he is the dog...obviously
the dog visits often...

Tuesday, July 12, 2011

Full blown summer and some serious summer plans

It is still windy
Fresh and cold
I do not mind the wind as long as it stays dry

I will start packing for our annual camping trip with the boys today. Ten days. Clothes and toys and aba stuff are the bare necessities.

Woolen sleep wear
Boots
raincoats and pants
coats and jackets
woolen blankets
shorts and t shirts (to tempt fate)
Woolen sweaters
40 pairs of socks or so, and of course woolen socks
swimming gear
toys
books
Our work material ( photocopies of the exercises and other essentials) The camping trip will be used for generalizing and practicing not for teaching new stuff.

Hubby will be in charge of the tent and sleeping bags but the food food area is our mutual responsibility. We are so planning it....

We had planned to drive the east fjords but as the old volcano Katla just farted and ripped the ring road apart we need new travel plans.

Snæfellsnes.
West fjords and all the lovely stops in between.
Hubbys sister is living at a small town in the west fjords we will visit her in her new home and as she lives in his gorgeous 17th century house and her husband takes care of the local museum which is just beside I am very much looking forward to it.

I very much need a break....

We will come back a week before play school starts again and that week I will use for planning how to get the most out of next winter. I will video tape what he has learned this summer in play skills.... showing them what he can and thereby making it very obvous that all they need to do is generalize that into the new environment in playschool.

Our consultant has offered to spend a few days at play school to try to kick start his program.... She is not o pleased with the progress... The play school always seems to need more and more assistance.

I am putting my hopes on it but I am wary ... I have had hopes for a good program crushed far to often.
But she is wonderful... and I need so desperately someone like this to right our course.

We made a decision to hire a help to work ten hours a week with him at home. To increase the pace of his program. To guarantee at least 30 hours. I am not counting the play school in.
I need that help to give my other children time without worrying about him all the time. I do that constantly ... just can not help it.

I know I will start next fall by arguing a bit and critizing and hope I will manage that adequately perhaps even gracefully and perhaps without blowing things to pieces

But it is still summer and I have plans to see my daughter in Paris at the end of her Interrail tour. A week in Paris at the beginning of august.

People have convinced me that no one will die while I am away and that a week will not make the whole difference in the world for Sturla ...but it might make a difference for me. two years of this hectic program is taking its toll. I promised my daughter this trip when she was fourteen years old and it is about time.

But Sturla what would you like to do...
Can we go to IKEA
Buy yoe yoe icecream
eat hot dogs.
rent a mowie and go swimming
go to the cinema and go camping.

We have been cramming in lots of what he thinks are enjoyable activities... getting him to remember and talk about what he did...

Sure baby we can fit that in... just tell me what you did yesterday.
I went to the dvd rental and saw a dog film and I played with the space craft and the tools.

Yesterday is still with one prompt at the beginning of the day but I see finally a decrease in prompting and that he is able to mix today and yesterday when well focused... we are not quite there but getting closer and closer after I changed our approach.

An increase in vocabulary is the english phrase vadde fuggit meaning something like thats to bad in my kids minds and he has picked that up and uses very appropriatley when playing his computer games.. vadde fuggit he lost... vadde fuggit he fell.

We are on our last program in conversation intermediate according to our blue book. Next I will mix those questions and make him make eye contact while he answers. He will have learn when to ask and and when to answer...

The clock continues to tick in my mind as a time bomb. I know it is a stupid attitude but just cannot help it. He will be six years old very soon and he just seems so babyish. Adorably so and awesomely sweet with his huge green eyes and constantly unruly hair.(well the hair might be due to the fact that I am lazy taking my sons to the hairdresser the all have long unruly hair no aversion to haircutting here except from me)

While the small dudes his age play sword fighting and adore the manly heroic superheros and fighting he prefers pretending to be a puppy... yelping and licking my face out of the blue. He likes Hello Kitty just as well as Ben Ten.

What do I do
Look son this is boy stuff and this is girl stuff.
sounds silly...
He has not defined himself.
He lacks still the self awareness to do so.

We are working a lot on eye contact and playing games and if anyone anywhere has good ideas about games with eye contact I would love to hear them...
What works...?
Vadde fuggit...
How do I do it?

Eye contact is a gift i will never get it unless he gives it freely and the reinforcement must come from an inner pleasure.
Tangible reinforcers only get you so far in this domain.
so be more fun mom...

Monday, June 20, 2011

A windy summer

So far so good.
Thanks to his brothers mostly.
One sticker for ten minutes of play. Two for twenty and et cetere.
They oblige... for the stickers and for what they can be changed into. 15 stickers each and we go to the cinema. Or the praise or perhaps also the fact that they sometimes enjoy being with him.
Sometimes it is not all work.

The play book is going well at home... he can now finish eight different assignments and work on his own for almost 40 minutes. That is just fine for a five year old. He shows me when he is finished, asks for his reinforcers and comes for short sessions at the table and then returning back to the assignments.

We are at the beginning stages of conversational skills and I am desperate to help him master those skills.

The concept of yesterday is sinking in...I wonder if we are doing something wrong in that area... seems to be taking sooooo long.

The play school is working on pronounciation it goes slowly they have not followed through with the advices they were given from the consultants we have been provided with.... there is progress though... perhaps that progress is also due to the fact that now he is playing more he is talking more.

..and showing more initiative...

Summer break starts in ten days.

It is a cold summer.
A windy summer.

We went camping...
A family gathering. The reunion of the children and grand children and great grandchildren of seven sisters that were born on a farm in the north. Seven sisters lived and five boys dyed. That was in those days.
My Sturla has the same features as his grandfather his namesake and great grandmother.

He loved it though the third day he said he wanted to go home.
At the dinner at the gathering party he said he wanted to dance with the girl...

He remembered from last year another family gathering another set of siblings from another farm in the north... the same area the same particular features again ...long faces and sharp noses like his grandfather again and great grandfather. And there everyone seemed to play an instrument or sing and we had live music all night and there this little girl danced to the lively accordion and he could not stop himself
...and they danced for a long time those two. Holding hands and twirling.
Lovely

This he remembered... yet he will not tell me what he did yesterday.

I ask him tell me about Eiki.
Sniggering he tells me.

"Eiki is not my brother
he does not play the saxaphone
and he does not practice fencing."

Hmmm. really!

Wind or no wind it is still summer.

Monday, May 30, 2011

Whatever it is... it is welcome.

Perhaps it is the sunlight and the fact that there will be no night for many weeks.

Perhaps it is the cold fresh wind that reminds me of sunbathing with a woolen blanket
in my grandmothers garden as a child.

Perhaps it is because my half brother came for a visit and it comforted me seeing how much he looks like our father whom he never saw.

Maybe it is because my daughter sang at a concert yesterday and I am still flushed with pride.
"I bet you sat there yelling she is mine... somewhere in the back"
I did you ... girl.
I did.

It could be the way my middle children are eager to play with Sturla.
Sure... collecting stamps and little prizes. I can still see how the hug him more often and that he is asking them to play and they rarely say no.
Sure I make their effort worthwhile...
but still.

It could be the good meal hubby prepared tonight.

Or the fact that I feel a certain security with our consultant coming in full force finally.
A certain hopefulness.
Been there before, certainly.
hoping to stay this time.
Hoping again.

Perhaps it is the dog game Sturla is constantly playing these days sniffing around using pencils for bone licking my cheek and barking, hiding in the dig house. He is hilarious.

Or the way he took effortlessly to the playing with puppets program this evening.

Whatever it is there is a sense of relief... for the moment at least for a worrysome drama mama.

Anyway the summer just began today.

Thursday, May 26, 2011

So so social.

Still trying to put thumbscrews on the play school.
I am actually imagining we are making progress. No one has done anything but accept our suggestions. So so far so good.
A detailed plan for every minute in the school and how it is spent. The goals and how well they were met. In hours and then in data of progress.

Our private consultant is worth her weight in gold.
Two program have already started.
one has to do with how he spends his time when on his own because he needs constant structure. We are teaching him to use a play book. He gets two assignments he needs to fetch the book get the stuff do the assigments put everything away and ask for his reinforcer. This needs a lot of planning. Soon we can add more assignments and hopefully help him to plan his actions better.
Good for him and soon a little relief for us.
The second is following other kids around to play with various items. Play stations.
So he is following already and now we want interaction.
So talk.
Look.
reply.
comment.
show.

Get him to answer his name with a yes.
Hey... Sturla...
yes.
do you want sweets.
yes!


His brother are doing this one in the car.
It is obviously absolutely annoying to answer your name when the one calling you has nothing to say but good job og great answering.
Potatoe chips and sweets are worth talking about. At least in my mind.

At the moment it is all about reinforcement. Getting him to talk is the ongoing big goal. I am dying to know what is in his head.

Wednesday, May 18, 2011

What did you do today?

I went to play school.

Yippe and a swirl.
and what else?

I went swimming.

Hooray and more swirls
Something more?

I went into the hot tub.

Yea and swirl and hooray to you
did you do anything else?

I had a toast and juice for breakfast.
yippe and another round.

what did you have for lunch?
I do not know.

That is great too.

What are we going to buy tomorrow?

A giant pizza... he replies laughing.

No... have you forgotten?

A Spiderman toothbrush.

Hooray and all the swirls in the world for you my darling.

Saturday, May 14, 2011

Summer

The days are already long and bright... the boundaries between night and day disappearing.
So very very green. New birch leaves.

I cannot make a decision.

He is happier slowly ...hopefully turning around to his old happy self.
He still clings to me desperately when I leave him at playschool. His therapist is trying... I know they are trying... just wonder if trying is enough.
Not really in my book.
Trying until it works is the only satisfactory solution.
I am building up a social skills program at home with the aide of a private consultant. Hoping to implement that into his program at the playschool.

I take his programs home every day now. Too see his data and to work on the programs. I am not too happy about what I see. Few trials and low percentages and still no data on social skills. I pick him up as soon as I can.

Then there are all the things that no one can measure.
The joy of playing
the energy that builds up when good teaching and playing occurs.
The complex dynamics between people.
He needs intense energy and constant input to stay focused or else he slips away.
Lately there has been a lot of slipping away.

Still...he is playing again with his brothers. Commenting a bit more...
So how about an amazing miracle this summer a burst of something sunny and social.
How about that?

And the rest of my kids...
Growing so fast I can not keep track. My daughter turned eighteen. going away on interrail this summer.
May is a time of exams and tests and farewell meetings. Music lessons and school will soon be over for the summer.
There have been two sunny days and Dabbi looks like he spent three weeks in Spain, he wants to learn to play trumpet, because it has only three notes. Eiki prefers to sit inside and read or discuss the different habitats of frogs, he is making good progress on his saxaphone. Jöri is turning twelve this summer his humor getting a bit sarcastic and dry, his sister his idol. They just grow on their own.
I spend too little time with them.

I wish I could stop time.

Sunday, May 1, 2011

Still snowing...

It is getting brighter... the clock is almost ten and the sky is rosy pink just like candy floss, the ground is white with snow. I watch the birds stubbornly becoming busy.

The next few weeks will decide if I am quitting my job to stay at home with Sturla or if the play school is capable of dooing the work that needs to be done. Weird.
I have watched his main therapist and in DTT training... she is good. She is nice and sensible and I like her.
The problem is complex.
They seem to have no clue how too train social skills.
The have never taken over his program from the last play school.
The do not follow through.
The have no clear goals for him.

The final straw for me was watching the videos they took of him to represent at the meeting coming up next wednesday.
They took the videos at my request... my very much repeated again and again request and what I saw is horrible.

He is unhappy.
He seems to have no initiative.
He just lies there on the floor oblivious to his surroundings.
I could not believe this was my child.

What I saw is such deep terrible loss of any will or being. It is Horrid.
I can not leave and go for work dreading that this is how he is spending his day.

The first step is a meeting tomorrow morning discussing our complaints. Then I have a class to teach for three hours so I need to leave him there.
Second is implementing it is my way or the highway policy.
I will decide what they work on and I will get it in writing how many therapy hours... one on one teaching the think they can provide.
Then we have the meeting on wednesday.
For the next few days we will start over.
He will only spend a very short time there each day and they will work on engaging him in a more energetic way.

I have worked with him over 30 hours the last week trying to get things going again and you know what he is still learning quite fast only he needs to be reinforced quite a bit more not surprisingly after what I saw on those videos. He is as silly and funny as ever. He is the same child...

I cannot even translate what I feel into english. My utter and total disappointment and sorrow that they could let this happen to him.

He has not gotten the hours I thought he was getting.
I blame myself for not looking more closely at his data and for worrying too much about maintaining good relations with the play school.

Now wonder things have been going slowly with such a drop in hours and no proper reinforcement.

And I blame myself. I blame the system and ....
...it is all so useless
start over... swallow the tears ... get on with it...

Monday, April 18, 2011

Snow and spring

I am in desperate need of a summer and the lilies in my garden that so bravely stick their green heads above ground are really risking their lives.
It is still snowing.
I could have taught my students a lifesworth amount of vocabulary about the weather in one hour just by looking out the window. Snow sleet hail sun and a sudden rain.
Springtime.

We have been trying to run an ABA program ourselves and participating in the ABA programs available by our wonderful scandinavian wellfaresystem offered by our public playschool system for about one year and eight months I am crazy enough to be counting the months... this glorious setting will be available for one year and four months more.
We are still trying to get the program to run smoothly, we are still talking about hours and the necessity to have clear goals in every possible setting and we are on our third playschool.

After next year we will have to look at our options and think of the right settings, at the moment I feel that a miracle has to happen for him to be mainstreamed or perhaps it is still snowing in my brain.

I am no spring flower.

So what is up.
Our private consultant is coming in, every two weeks now and so hopefully something will happen in the social domain at play school. Hopefully some goals will be put down and some even met.

I have been thinking about pulling him out and stay home with him.
We can barely afford it.
It might not be for his social benefit in the long run.
I might go nuts.

On the other hand.
We could manage by stop using our diesel devouring monster of a car.
He is a part of a herd... having three older brothers and a truckload of nephews.
I might relax a bit as I hate all those meetings. I am much better in one on one meetings.

I did let go of my own home program for a while in an effort to trust the play school.
Not a good idea.

So I am constructing a new home program again.

We are working on.
The diary. I want him to retell something that happened in one or two or perhaps if I push it a three sentences. I went to the store with mom and we bought food.

Why something fits together. Building word analogies. Whye does a foot and a sock fit together. Aha because we wear socks on our feet.

Three step commands. Necessary for building up play skills and a prerequisite for several other programs I have my eyes on.

I am revisiting prepositions. Some were left out and some need more generalising.

PLay. Go fish...
Playing with dough and making his own figures and make them do stuff. So make a snake make a pitsa for your snake put pepperoni on the pitsa make your snake a bed and a house. Make another snake and let it come for a visit.
We draw a lot and we play a pretend game pretending stuff is something other than it is a dish can be a steering wheel or a drum, a spoon can be a tail and a guitar and so on.

sounding out lower case letters.

other things that i am trying to generalize and increase in frequency is asking questions and we are still working on pronouns.
Busy, busy.

The books on my night stand are Teach me language, Reaching Out Joining in an Teaching children with autism to mind read.
Gone are the days when I read nothing but novels, fairy tales and fantasy.
Does this mean my mind has expanded or has my world shrunk.
Shrink shrank shrunk, the silliest verb in English.


I really want that spring.

Sunday, April 3, 2011

Something not right...

He has refused to work at his programs at play school I have had increasing troubles getting him to do the exercises at home as well.

He refused to eat there and then he refused to go there in the mornings.

A whole meeting just on that subject.
It seems to me that they do not get the connection between making themselves reinforcing along with the object or stuff used to entice him.
Well... the factor has been neglected... it is hard to go beyond the comfort zone.
A few days later...and the whole focus went onto just seeing what would make him tick again

I know they are trying ....
The good thing it can be discussed and hopefully solved.

Voila

On friday his lights seem to be on again.
He seemed himself ... funny running around and as silly as ever.

He is stimming more still
.... spacing out
... pinching his skin and puts his hand into his mouth all the time. I hate that.

I have no idea what is going on.
Hopefully nothing... just your ordinary autism troubles.
I am scared though.
Everything has slowed down.
progress makes me tick... and i am just not ticking so much at the moment and it ticks me off. Had to put this one there... lame ...I know.

We went swimming yesterday.. nothing new. Except he seemed lethargic and out of it...
I literally pushed him up the stairs of the slide.... something he loves doing and yes he liked it when he got started.

In the dressing room he decided it was a good idea to blow rasberries on a bare womans butt...

she was surprised.
I was to exhausted to explain or just say anything.

He pushed a little baby so she fell.

Later when that same baby started crying he ran to the mother and told her to put a pacifier into the babys mouth... then he dried her tears...

He is either into everything or out of it...
I do not get it how he can be turned on and off like there is a switch on him.
Ether he just lies there or paces around or he gets tons of ideas and has acted them out before I can draw a breath.

He keeps me on edge.

I just have to add that the story of the rasberrie blowing boy in the womans locker at my favorite swimming pool has not ended.
He did it again today... the woman turned around surprised and smiling to that little one giving him the most positive reinforcer and hopes for future rasberries.

Sunday, March 27, 2011

Around and around

Just because it goes well with ups and downs

One little boy with autism
Public swimming pool
The wrong swimming trunks
A stubborn mom
a tantrum

half an hour of screaming and then he gave in...
I think I deserved that ice cream afterwards.


Perspective flunking
A box
two brothers and only one of them had a peek inside.
Who knows what is in the box.
blank stare
What does she want from me now ( I can see him thinking)

So a new program coming up or what...
will it ever end
most likely not.

I have been trying to educate myself about theory of mind.
quite a bit of stuff to think about.

On the other hand I am pleased that he seems to have started to understand that nouns in Icelandic are subjugated we have four different forms for each noun and then of course the plural and definitive article.
It is a lot to learn.
but I need not to take care what form I am using unless the word is very irregular he seems to be getting it. Unless for numbers which change very riregularly.
My foreign students have trouble with it as well.

Wednesday, March 23, 2011

Ups and downs

I have been trying the last weeks to focus only on the positive side of well pretty much everything... trying to clean up the rest of that winter depression.
The truth is we have a mix and match of ups and downs.

Last weekend I felt as if everything was going downhill.
And last week the playscholl felt the same.
He did not oblige any commands. He did not look at us he did not learn as fast as he should have.
Why?
What?

I have been trying to use more social reinforcement. It works better... but i get very tired of the constant eager happy face I have plastered on my face. My throat hurt because Of the high affect and the way I spoke . It did catch his attention though and he did do what he was asked because he had fun.
Is this what it takes at the moment. Little trinkets and sweets do not do the trick anymore.
Will I speak like an old frog for the rest of my life.
Are we going forward or backwards?
Is this regression?

Why do I always get so scared when there is a halt in our work?
Plateu, regression. It just freaks me out.

Then I put on my lipstick and he looks at me and asks.
Will you give me a kiss.
WE have this script... cute one ehh
Sure baby, a kiss for you...any time.

Wednesday, March 16, 2011

A friend?

My boys practice fencing.
A very boyish sport and they wear a costume and a mask and an actual sword and they love it. (except when it interferes with their computer time, I guess they love the computer more)
So four days a week I drive to that place... cause they cannot be all in the same group... bugger ... the oldest being well to old... for stabbing the little ones.

So twice a week this little girl show up with her mom.
And she likes him.. my Sturla and she wants to play with him.
She came for a few weeks and then we did not see her for a while.
Today she came.
So they play in a very limited way though. Mostly simple structured games like picture lottery or finding pairs of something... and I fill my bag with stuff she might be interested to play with.
She is a bossy little thing and a year younger. Closer to his developmental age but old enough to follow simple instructions and ...well ...boss him around a bit.
So far so good... he asks for her between classes and misses her terribly if she does not show up and guess what... she does too.. her mother told me...
So I asked if she would like to visit him someday and the mom said no problem and he could visit her as well.

We talked about cats.
What is the name of your cat Sturla. The lady asks.
Branda.. he replies and then adds.. do you have a cat? (one of the first reciprocal question he has been learning at playschool. The program just started. He looks somewhere into the distance though ( we have to work on that)
But still.
Did I mention that I blurted out his diagnosis.
The lady only said he was doing great
( ha ha I thought, not that great in socal skills and not really conversational yet)

and perhaps it would be good for him to practice his social skills in different settings as well she added.

Uhhu... Yes it absolutely would.
Now I will stop whining about not knowing how to nurture social skills and jump into the pool.
I feel like I won the lottery.

Sturla is drawing.
I ask .. why is he sad.
Because SD did not come to fencing

He changes the face.
Why is he smiling now
Because SD came to fencing.

Saturday, March 12, 2011

Language evaluation

Raynell test showed him to be at the level pf 2.6 years old in expression and 2.8 in understanding.
I believe him to be about a half a year further with familiar people.
I am trying very hard to think about the fact that we have been doing therapy for about 19 months now. before he could not even be tested in language. There were no understandable words to the casual observer although I always insisted he was talking. And he did not comply to any commands. To busy running away and pacing back and forth.

I am extremely good at denial. I heard words even before I plastered my walls with pictures and began the incessant drilling. I absolutely did.

So in playing the optimist I say that we are doing good. 2.8 years of progress in language in 1.9.
Still I am sulking.
I just want a magic wand and make him talk and talk and talk.
He has a a lot of catching up to do.
Socially he is even more behind but academically he is pretty much age level.That is easy to teach that is why. Numbers letters colors and a dash of general knowledge. Matching and drawing is fine. Still he is not generating his own ideas very much although that happens from time to time.

He is already 5.5 years old and time is flying fast.
We got permission to delay him starting school for the next year. We have bought some more time for him in intensive ABA.

Friday, March 4, 2011

Too soon .. not prepared

He got an invitation to a birthday party... at playschool
Too soon I was caught off guard.
What to do. What chaos in my mind to go or not to go.
I went home to cry a little, could not help it.. too tired that day...he watched me tears leaking silently down his cheeks... then we went ahead with a little present.
I was the only parent who stayed. I mumbled some excuse came late and we went early home.
I had thought about this before and made a decision not to turn down any opportunity for new experiences or participation in society.
He gave a present.
Ate a cake
Stimmed a little running back and forth.
Enjoyed himself and was quite oblivious to the fact that he was not participating anything at all.

I was curious to observe how he would behave with the kids he sees every day at playschool.
They find him funny.
The consensus is to laugh at him not with him.
Not good.

I had to know I just had to see.
Now I know.
I watched the party like a hawk.. who is doing what and what and how are they doing it what do they know and talk about and what is he doing.

His language skills grow as well as his cognitive abilities but social skills not so much. Those are harder to teach and frankly I am quite far from getting the hang of it.
Where to start.

amazon I guess.
I have to read something before I can start to think... still so very much at loss in the social department.

Friday, February 18, 2011

He can do it.

For all his life it seems to me that I have been shown glimpses of what he can do... It makes me constantly hunger for it to be always so.
Instead there is this effort of dragging out his potential into the light of day.
I long for the day we have real conversation instead of this interrogation that seems to be going on.

Every evening for the last month we put something in a bag and talk about it in the morning. Yesterday the bag was not in the bedroom an me not being the tidiest person on earth had no idea where it was.
Hey what is missing.
The bag.
Can you find it?
Yes. and of he goes... yelling... I am going to find the bag.
His brother replies. It is downstairs.
Yes I know, he says and goes down the stairs into the kitchen and asks his father. where is the bag?

huhuuh, says his father, busy cleaning the kitchen and absolutely unaware of the glorious moment.

But he finds it anyway and brings it upstairs to his thrilled mother.

The whole sequence was fluid natural and effortless. Still so special that I take the time to write about it. Window into what could be or what will be?
At least it makes me think that I can ask for more.
Give me your finger son and I will eat your hand.

He was building from legos when I picked him up from playschool yesterday. A dragon. His repertoire is not big. Dragon, house and a figure he calls Sturla. I ask him anyway... hey what are you building and the little boy sitting with him replies.. I know it is a dragon...
I put the child on ignore and focused on Sturla. Turns out he was building a sturla. He reaches for a lego but the boy rips it from his hand.. This one is mine.
Sturla is passive and lets this happen. I bite back the urge to grab it back and stick out my tongue.
We are going home anyway...
He needs to assert himself.
He has to learn to push others around.
I am on it as for today.
phrases like ... this is mine.. I want it... I am first.
MINE MINE MINE.
I know it.
I can.
I am so sure he can.

Wednesday, February 16, 2011

Nothing much happening...

No news are good news...
or so they say... the one who came up with this obviously did not have a child with developmental delays. huh
The diary project is going well. WE have moved up to planning the future a little bit.
What will we do after playschool...
feed the ducks
go to the store ...

I try more and more to ask him with out the aid of the book and it is coming along.
He always knows what he ate at breakfast and when he had cereal or porridge. At breakfast of course.

I am planning to try out video modeling. I need to read a bot more and plan the sequences.

Things at play school are good.

I hired someone a while ago to help supervise his programs as the supervision by the system is not adequate in hours. It is fine when they are available but availability is to scarce.
So to my pleasure I saw his therapist at playschool e mailing the aba supervisor late in the evening and I was thrilled. It tells me she is thinking of how to do things and make things better not only on a nine to five basis.
It tells me she cares.
On top of it she is calm and nice and sensible.

I need that.

Sturla is happy and he loves to go to the playschool.
He is building lot from legos. Drawing tiny tiny pictures and he tries to interact now and then. Playschool is already working on that.
we are just fine.
and spring will be here very very soon.

Friday, February 4, 2011

A new curriculum at play school

We had a meeting finally... a meeting with the ladies that supervise his program...
it is four months since we had the last meeting and then ...everything was about to blow up in our faces with dramatic scenes in that last ,and our therapist was just about to walk out on us, that was september, she had a hard time working there...and was lonely... I guess. We have not spoken since.

Anyway...

The new school has been understaffed and we knew that was to be the case until new year. So in january I was getting agitated that his hours were still so to few and fewer still because of someone being sick and so on and so on. And exhausted by trying to hold things together and to keep his learning pace where I want it to be. It has been a tough winter.
Would everything be as I was told they would be?
Would he get a full 25- 30 hour program there?
How was his relationship with the therapists?

And I can breathe regularly again.
The change is hard though. Someone else will be taking some of the burden and I have to learn how to slow down and focus in another way.

Anyway...
The therapist is great with him and I watched her work and liked what I saw. They took over his home programs.
They took notes during the meeting and ... they just keep thing in order.
I am just not used to this kind of thoroughness.
He will get a full program.
And the hours.


I will take over the maintenance work and generalizing at home. And whew... what to do... what to do...
Playing more and learning games. Finding something that will strenghten what he is doing at school.
I am thinking and cracking my brain and I am at at loss in a strange way. The urge to do something drives me and it would be far better if I did something sensible.
I need thinking time.

I still find those meetings hard. I try to wear my steel coat... and think this is not about me ...this is for him... and say what I mean and try not to hear or think about what they think of this overprotective control freak of a mother that this little boy has.
I know they find me controlling but it is not about control or trust in the system or playschool or some ladies that I see every couple of months it is about a boy that is entrusted to us his parents... and I will not let him down.

So anyway.
learning to dance to a new tune.
I can not have more programs going on in addition to the play school... that is not sensible.
new steps coming up soon...
WE are applying to postpone his transfer to regular school. Hopefully getting positive answer soon.
And so to goes on.. and on and on...

Monday, January 24, 2011

Thoughts... too late in the evening.

Acceptance has nothing to do with it

I just cannot watch you imprisoned in your disability, your slow language and lack of know how in navigating the social waters. I look at you and see your longing awakening.
Your attempts to join and ...the way the light dwindles in your eyes when you cannot follow the game.
I see the children look past you as if you do not exist.
I want you to take charge... to establish yourself.
Make your mark on the world and mold it.

I love it secretly when you shout no in a determined voice when you refuse to sit and work because you have other ideas and plans.

My father once told me that one can not have a true rational thought until one can put it into words.
It is true in the sense that we exist for others. Thoughts are shared in words... My father the linguist was probably not a very visual thinker but still he is right that thoughts must be shared and until someone hears you, your existence is not of much consequence. The same goes for art. Art that is not shown to others is of no consequence and could just as well not exist.
The world is a harsh place for those without language and for those who are not a part of the crowd.
No matter how much they can love.
And you can love enough for many.

There it is my deepest fear
That you will not be acknowledged. That your voice will not be heard.
That your beauty will not be appreciated.

I want you to argue your own case in the world.
I want you to laugh in its face.

Saturday, January 22, 2011

The power of questions and connections

As Sturla master the various questions, we all shower each other with every day I feel like a new door is opening and it is thrilling to say the least.
I successfully asked him today what he had for breakfast lunch and dinner. I could ask him what film he was watching this evening and why he did not have cheerios for breakfast.
Because it fell down the stairs...
and was ruined.
who dropped it?
Me?

He brought the whole package ustairs this morning as his parents squeesed their eyes shut and tried desperately to pretend it was not morning yet.

I want cheerios... uhuh ok. I will get up..
to late...
I just caught a glimpse of that yellow package rolling down the stairs those little rings tumbling all over the carpet on every step all the way down ..down ...down.

Good morning lovely saturday.

But what a great topic for conversation.

we worked for the greater part of the day and Sturla played his favorite game Spor on the computer in his pauses.
I needed him occupied while I made the his brothers do their homework, as hubby took care of the chores around the house.

We had a visit from my sister in law and her younger son and then I closed off the computer.

I fed the kids loads of sweets and made them keep Sturla with them in their play. they played dogs for a while and then switched off to some gunfighting games with some really stupid noises. i have never understood how young boys manage to produce all those weird noises.

We went cycling to the store to get sweet supplies. Lovely carpet laid teeth at the end of the day.

My daughter showed her pretty face sometime around lunch... the sleepy teenager that she is and disappeared a few hours later to her friends. They planned to have a girls only evening together but still took great care with their wardrobe .. it was to be a fabulous girls only evening.
She comes and goes....
Independent as she has always been that little girl that wanted to be a lion once and growled at strangers.
That is what growing up does and means... Now I get to watch and enjoy.. the main work is mostly done.
Strange
Now it is me that asks her to play...
She is busy being independent. I will sit patiently on the sidelines until she needs me again.

I took pictures throughout the day and glued them all into our precious picture diary. Asking away what and when and how and why with whom and where and he gets better and better every day.
This diary is a life saver a simply great idea that I should have started months ago when I first heard about it. It can be used for so many purposes.
Concepts of time
Sequencing a story
Before and after and so much more because it literally documents a rough sketch of every day and the day before.
I plan to expand it in every possible way.
Then we can go to earlier days and say remember when....When he finds something funny and interesting I take picture of it and we can laugh again..

His brother bicker.
An my oldest has been sick but not so sick as being unable to bicker with his little brothers. Sigh...

I have only half brothers no one grew up with me so in a sense I am almost like an only child. I do not get it and have no idea how to handle this nagging.
Please be nice boys...
I am outnumbered.

They are all good to Sturla, he is somehow off limits. They understand or seem to agree between themselves that he gets special treatment.
They pick up the way I teach him and do it very well. He is very lucky to have them all, and they teach things that I could not or would not know how to do.
I just hope they will grow strong and wise and understanding.

I worry as usual.
Guilt again?
yes.. guilt is a strong resilient plant.
I keep watering it at least twice a day and look how it grows.

Wednesday, January 19, 2011

Curriculum update

Wh questions are coming along finally though we have nit quite finished distinguishing between why and where and i cringe when I think og when. Other wh seem OK though I still have not checked out all the different subjugation forms. We have four in Icelandic.

Questions are dangling there somewhere he likes to ask what are you doing as that brings him into interesting activities with his brothers. What is this seems to have generalized but who is it is still stuck on the table. I made the mistake of reinforcing better for asking than for knowing so sometimes he will ask even though he knows.
Today I made some exercises that make him ask for a word he does not know. I ask can you hand me the qwz and he will ask what is a qwz. And I point it out to him and praise him for asking. I found out the I had been using the same cards to often and he had memorised quite a bit of objects that are absolutely no use to him and he still asked even though he knew the words. Change of strategy is needed and more praising for things I take for granted.

Executing three commands at once... hand me x y and z. One week or so is my guess and we will start generalising exercises.

General knowledge OMG I am so sick of it a and really need to give it a facelift. General knowledge is a never ending story for everyone, raise your hand if you have aquiered all the general knowledge you need in life. What I want to do is to give him some database to work on until he will make his own. Move into text understanding and using wh question. He is learning pretty fast but I am getting too bored and he.. as well ...that seems to go pretty much hand in hand.

Describing an object. Like a car is a vehicle with wheels. A bird is an animal with Wings. We just started... seems to be going fine and be at an appropriate level. The goal is for him to come up with his own descriptions and generalising into his descriptive language.
Colors are a part of this but he is color blind and I often make mistakes in asking something he could not possibly know he does not see any difference between light blue and pink dark blue and violet, brown and green and some other shades including bright yeollow and green. I just found out three of my boys have this same color blindness and it runs in the family.

Memory and recounting the day is coming along steadfastly. the book we made is working very well indeed.

We work a little bit on numbers every day and I am training him to recognise the numbers on a dice at a glance.. so we can play more games. we put the numbers in the right order and I ask him to hand me one x and two z that one is not going so well... There is probably some step missing and I am not getting what.

I try to throw in now and the new concepts without making it a part of the program what is strange ot weird is something I am pointing out without training it.

Social skills are as always the big fat chink that i do not know what to di with i know osmosis is not the method he will learn it so as i am at loss still I want the play school to make it a priority and work on almost just that all day long.
Today I watched a little boy come along and shake his shoulders while repeating his name a few times. Sturla responded likewise grabbing the boys shoulders repetaing his name twice and they laughed. Very very simple interaction.. it made me both happy and sad.

We are applying to postpone his entry into school for one year so he would be seven instead of six when entering first grade. We have been all over the place to get letters of support and bla bla bla. Trying to buy one extra year of intensive therapy. he needs it very much indeed if he is going to be mainstreamed. Without one more year he can not go to school with his typically developing peers.
All those high hopes and our head in the sky...I often wonder if my feet still touch the ground.

Monday, January 17, 2011

On the old tired guilt train again

Why..
well it is a catch 22.
Work all days long with Sturla to ensure the best outcome possible, and neglect his siblings.
Or work less with Sturla and leave them more to deal with in the future when I am not there anymore.
There is the hard place and then there is the rock.
It is a no win situation.

My life is a bandaid life. Nothing is permanently fixed.
juggle juggle

The new play school, I found out last friday has been delivering about 10 15 hours instead of 20- 25. I made a decision last fall to work with him tventy hours a week. Evenings and weekends. That does not add upp to forty.
Can I do more? Five more hours. How?
I can not pay for therapy. I can not afford it.
I should not underestimate the time it takes to get him to follow directions like the other kids in the group.
But when I have taught him to come and ask a kid what are you doing? And the kid does not answear they absolutely should take the ball from there and teach Sturla to be a bit more insistent. He will ask can i do it with you... if the kid answers.
That is the wonderful asset of a bunch of brothers... they will play along when we are teaching new play skills and social behavior.
Annoyed?
"yes a tiny tidbit"

I have a slight hope that the therapy hours in play school can be increased.
I do not trust it.
Trust in the public welfare system is permanently broken.

I know I am fixated and I am going to keep it that way.
Why
because he is learning and learning and I cannot wait until he masters every new skill I can dream of.
I can not wait until he tells me coherently what he did and how he liked it and what he wants do do in the future.
Why is language so bloody complicated....it takes forever and ever

I just can not wait forever...

I have forgotten my friends an I have no time for new ones.

Someday when there is no more teaching to do I will sit down in front of the TV and never ever look up again.

I am very tired.
I also feel guilty of being so down when other people have a even harder time.
It is just that the fact that someone else has it hard, makes me no happier.
I was a picky eater as a kid and my mother would tell me to think of the poor children in Biafra and be grateful for the food on my plate. I could not eat and I still feel the same way. How she thought I would eat with pictures of starving children hovering before my eyes is a mystery... perhaps she was tired, very very tired and out of options.

Sunday, January 9, 2011

Remember

Remember when ....
We are teaching time concepts and how to remember and retell your day.
We make a book and take pictures. Several photos that describe each day and we talk about the day and what we did yesterday. We make the eating times break up the day so we can talk about before and after, we are doing it very visual with the book and the layout always the same.
So now he tells me what he ate for breakfast.
What he did in playschool.
What he did after playschool.

I bought six different cereals to make sure breakfast would be very memorable. Sweet stuff and sugar coated nonsense.
Today he told me what he had for lunch. That was a surprise. I did not drill it in.It tells me he is generalizing what we are teaching.

I have a little bag and he puts an item in it every night before he goes to bed and I ask him what did you put in the bag.
When can you open

Tomorrow. He says

This morning he told me it was morning and he could get the glasses kept in the little bag.

I take picture of him and the item and we talk about what was in the bag yesterday and I wish I had thought of this so much sooner because it works like a charm. And it covers today yesterday and tomorrow. Morning and night. I take care not to require from him more than one concept at once going very very slowly through them all and we are just starting I have just started to see progress in this area... I would rather do this exercise a bit longer than having him confuse those concepts.
I have waited very long to be able to ask him about the past and to share experience I can wait a little while longer.

We went swimming in the cold an my hair froze in my head, It was to cold for slides and we stayed only in the hot tubs.

When he undresses he announces every piece of clothing that comes off and where he puts it. Then he tells me I am cute.
In the shower he comments on a womans big belly. I was thankful the lady was pregnant and not just overweight.
Been there done that with my neurotypical kids. He is to old for that sort of comments but he is so small that people think him a year or two younger than he actually is so he is excused still.
He locked himself in the wardens room. When the warden opened he ran out smiling.
I am here he says laughing as if we were all playing hide and seek.
He threw his mittens and cap over a locked gate and someone had to take the trouble to open and get them for us.
A tattooed man was dozing off in the warm tub and Sturla started stroking his arm very impressed by his colorful arm. The man found him just funny and cute.
He is funny and and cute and he is all over the place.

I sighed and thought of social skills.

Monday, January 3, 2011

The best bomb ever

I have been considering putting in some photos of my kids. But the truth is I have not learned how and I hate asking the smart asses that share my house to help me. They cannot understand why and how I have not figured it out.

So no pictures until I overcome my learning disability concerning computers and pictures.
Is there a hint of annoyance somewhere between those lines?
maybe

Perfect christmas happened on its own accord. Food was cooked and there was some cleaning done and the kids looked beautiful. They were happy and excited, my daughter is a not a child anymore she is such a wonderful help and the best company one could imagine (when the mood strikes her, moms are not always the coolest company)
Sturla loved it all. he opened his presents and played for a short while with almost every item. He was prompted a little bit to open the next ones but some he opened on his own accord and sometimes he tried to open some that were not his, when told so he gave them to their rightful owner.

We celebrate christmas at the eve of the 24th we prepare the fun and fuel the excitement with tiny gifts and sweets for days before until the kids are sleep deprived and loaded with sugar when the day arrives. We turn the days upside down and go to sleep in the night and wake up at lunch and somehow it is all as it should be, that is the nature of tradition.
Fill our bellies with sugar and salty foods. Watch movies into the night and play games.
We watch all the star wars movies with the boys I bought them all... My dear hubby gave me a hug a and commented on my lovely nerdiness. I love sci fi and I love fantasy and so very seldom give me the time to enjoy that escape to other worlds.

Games are the big success of christmas. The bomb game Eiki got as a present. The bomb is turned on and handed between the participants who then name items belongin to a category or a place or whatever... the goal is to hand over the bomb before it explodes. So tick tock... giraffe.. lamb, lion and sardine.

Yesterday Sturla got the bomb and handed it to me
poop he says
pee I answer
toilet he says
sink I say
Bathroom He says
and BOOM, we get no further...
This is the best bomb ever

I guess those intraverbals need no more training.
And the toilet humor is in its place so appropriately... if it were not I would make a program to teach it
I swear

New years eve.
We literally bomb through the night.
Wonderful colorful sky and smoky air.
It is still and cold the best weather for bombing
We bought lots firecrackers.
Sturla loved the starlights and he loved the bombing. He gave up and went to bed long after midnight and slept twelve hours.
I felt very rested the first day of a new year.

Happy happy new year to everybody everywhere.

Happy new year.