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.