Friday, August 27, 2010

It has to be said.

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

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

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

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

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

But that is what I have to do.

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

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

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

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


  1. I think that the quality rather than the quantity of the hours is key. Of course, I might just be rationalizing because my daughter has never nearly gotten to 40 hours. It's a difficult thing to do both financially and logistically. As you say, you can only do your best and learn from mistakes and hope for forward progress.

  2. Quantity without quality is pretty useless...I agree.
    I am lucky in the respect that a public playschool provides 25 hours of aba and supervision to our program free of cost. It is good but not enough. The rest is up to us his parents. Either we learn to swim or...not I guess.
    I realise that around the world people are caught between a rock and a hard place in providing therapy for their children. It varies between countries.