Friday, August 27, 2010

It has to be said.

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

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

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

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

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

But that is what I have to do.

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

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

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

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

Saturday, August 21, 2010

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

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

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

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

Friday, August 20, 2010

Where from now... curriculum update

Compliance does not equal progress.

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

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

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

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

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

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

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

Social skills.
Include:
Imagination
Games
Playing with peers.
Joint attention.
Taking turns.
Asking to join

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

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

Saturday, August 14, 2010

Back and forth and forth I hope again

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

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

Wednesday, August 11, 2010

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

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

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

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

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

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

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

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


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

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

Monday, August 9, 2010

Do they sell wisdom?

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

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


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

Thursday, August 5, 2010

Motivation again

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

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


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

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

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