Thursday, February 2, 2012

The Quandary of Loosey Goosey

Today we had our meeting with Maya's teaching staff to evaluate her goals for the first semester, the equivalent of report card day.

In Maya's school they don't get report cards as such, because school goes beyond the 3R's and each child's goals are based on their own levels in various areas.  Instead, we get invited twice a year to a conference to discuss the plan put in place during the last meeting and to see how Maya is doing.

In the US you would call this an IEP meeting, however, it is not nearly so formal as what I read about IEP's.  IEP's, from what I read from other bloggers outline in microscopic detail the goals and what the school and parents will or will not provide down practically to the type of toilet paper the school will stock in the bathroom.  A merger between Disney and the US Military wouldn't seem to get to the level of detail that is seemingly contained in an IEP.  Then again, you have many kids with special needs in the public school system in the US and if you don't get it in triplicate there is a good chance your kid probably won't get any services.

I always find these meetings both good but hard.  You are confronted with the reality, that progress is slow and that you have to readjust your expectations when dealing with a special needs kid  Progress doesn't just happen but is a very slow moving train with frequent stops.  You know that of course all along but these meetings somehow bring it all home again in some small way.

I really wish I could get through one of these meetings without having to choke back tears.  Maybe that should be one of the goals for next semester.


Hah, probably not going to happen.  

Because we live here, and maybe because Dutch society is so uniform compared to American society and there is only one way to do things, most special needs kids are not in public schools but in a special needs environment and at least for now, tax Euros (just doesn't carry the same meaning as tax dollars, sorry) support the costs involved, so your kids get services as long as they qualify and they have the diagnosis.  

So, the evaluation of the goals (literal translation from Dutch) happens.  The goals themselves are quite specific, they break down the different areas of focus.

Ironically I often find myself in a rather interesting conundrum when dealing with Maya and the whole special needs system here.  I only have the actual experience of the Dutch system however, I understand the American system much better than the Dutch system.  Part of it of course is a language issue and while I must say I am pretty impressed with how far I can get in Dutch, considering that I put *zero* effort into learning the language, the fact that I can have these meetings in Dutch and understand most of what is going on is quite a feat.  I do spend hours pouring over the written reports, trying to understand every single word which is being said and even though it takes time but I do understand each word, I don't always get exactly what the point is.

So, while I have tons of experience dealing with special needs here and none in the US, because the US is more in my own comfort zone I always find myself wondering if I really get it -- and the biggee, whether or not I should be pushing things more?

That's one of the many weird things about cultural differences, what might be considered as fighting for your kid at home can be easily misinterpreted abroad and might actually achieve the opposite of your intention.  At Maya's last school, I was not happy with the situation there and I did push beyond the boundaries of what they wanted to offer us and they just shut down.  There, I was the crazy American lady and they refused to do anything for us which didn't involve us taking Maya to another school, they understood that we had to find the right school but if it took too long we might have to pull her out of school.  It was only when I did my best lawyer imitation and appealed directly to her teacher that they told us we could stay until we found another school we were happy with.  If it would have been up to Maya's case worker, we would have been shown the door.

So, my dance with the school system here is always on some level my best twinkle toes movies.  Teetering between interested and showing that I am not going to be happy with some cookie cutter answer or approach, engaged but not falling into pushy American-you're-what's-wrong-with-the-world-today style.

I am glad to say though that we don't have this at all at Maya's current school.  They are warm and open and although I don't love Maya's teacher this year as much as hers last year, she is still warm and approachable and they deal with Maya as an individual rather than the cookie cutter style which defines the Netherlands.  

Maya is doing pretty well at school and it is always so great to hear that they view her as a very happy, sweet child who really works hard and enjoys learning.  

Her reading has improved and has gone up 3 levels since last year (bear in mind these levels are microscopic).  She is still visual reading but has gone from reading 4 to 5 word sentences where 80% had symbols over the words to 8-10 word sentences where only 40% have symbols.  So while I would really feel better if she would read aloud to me and want to do it, I am glad to hear that even though I am not seeing it too often for myself that she is making progress there.  

Her writing is still difficult and the physical therapist has asked us to work on her pincer grip by letting her string beads and play with small Legos.  She still cannot write her name.  The writing is a trouble spot but there are ways around this with a computer if it really doesn't come (yeah, technology).  

Her biggest barrier seems right now to be her concentration,  as she gets easily distracted and has enormous difficulty transitioning from one thing to another.  In her subjects she is making progress although her tests do not show that, she has real problems in taking tests, although her workbooks suss out that she is doing okay in her subjects even if it cannot be shown on a test.  Math goes okay, she has moved up a level but didn't reach the one which was her goal.  They put her back because of her test scores and some difficulty in adding but since they put her back a level it is going better.

We had a good talk with her teaching staff yesterday.  They are realistic about where she is but always positive and encouraging to us.  We talked a lot about how to increase Maya's concentration and although the aid does work one on one with her in class a few hours a week, they have not noticed notable progress yet.  It's a real one step forward, two steps back kind of thing with Maya and concentration.  They cannot seem to find a way to stimulate her on a sustainable basis.  What works one day doesn't at all the next.

I asked if perhaps it might not be a good idea to look for a behaviorist or an educational therapist to see if we cannot do something therapeutically to help Maya grow her ability to concentrate?  After a very long discussion about that they told us that they don't recommend it.  They said that Maya has a real joy for learning which they see and that she does work very hard at school and that even though her concentration is a barrier, doing more might have the opposite effect according to them.  Their view is that at 8 Maya is still very young and probably too young for therapy to have a real impact on this.  She is also a child where saturation is going to achieve the opposite effect of what you want.  She never responds to any kind of time or other types of pressure.  From the beginning on this journey we were told time and again to not turn home into an extension of school, that Maya was a child that needs her down time and without it her development will not move forward.

And this is still their advice.

I think if we were in the US, therapy would be not only indicated but encouraged, particularly if we were to go for it privately.  And hence my dilemma.  On the one hand I recognize that Maya cannot be put under too much pressure and I do firmly believe that part of the reason Maya has made the progress she has (and is not one of these kids who have a lot of pent up frustration and aggression) is precisely because we have made home her security blanket where she is free to be herself in all of her joy-loving-fantasy-game-glory, without pressure.  On the other hand I am always afraid that we are not doing enough and the reason why the school is not encouraging more therapeutic intervention is because they have already decided that Maya is defined by her limits and that there is no need to push the boundaries.

I will not come to the answer to that in this blog post or for many other years I think.

Up until now the main barometer I have used to feel my way through autism is Maya's happiness coupled with whether in the big picture she is making progress.  Up until now that answer has always been yes.

Having no crystal ball to see into the future I don't know if it is the right choice but I do know that my child is happy, she is healthy and she does, baby-step by baby-step make progress.

Any thoughts?  Sound off below!

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