Friday, December 3, 2010

The Gloves Are Off!

So many times I have heard people say that if you have an autistic kid you have to fight.  Up until now we have been spoiled.  Here is what is happening.

Things are not going great at Maya's new school. I have posted about this in the past, she is doing okay but the school and the treatment group is just not a good fit for her.  I have felt that all along but felt we needed to give it all a fair chance and also felt that it wasn't fair to judge this school based on the last school since it was two different organizations and there are a lot of differences between them.  The former is small, and deals with very young children, the current school is a large, complex organization and they deal with all different types of children from all kinds of different backgrounds with various issues and problems.  So I was giving them the benefit of the doubt, giving it time, giving it a chance.

Well, no more.  

The first 2-3 months were an observation period where they need to get to know a child before they can give advice and say what is best for them.  Therefore in that initial period Maya has not received any therapy. At the end of the evaluation we were told that the therapeutic group is not a good fit and that they were going to look into another group which might be more in tune with what Maya needs.  For more details see my previous blog post on this subject.  During this meeting we were also told that Maya did another IQ tests which put her in the 'difficult to learn category' and were told that the best school for Maya would be a school for kids in this category (in the Netherlands these are called ZML schools).   We were also encouraged to meet with Maya's school teacher, which we did.and she gave us more information about these schools and told us to check their websites and let them know if any of the schools seemed appealing to us, which we did.  

Now my judgmental self has suspected for some time that this school and therapeutic organization where Maya currently is, is not really invested in her but their mission is to move kids through their system as quickly as possible.  They have told us more than once that budget cuts have changed a lot of the rules and that the government has gotten a lot tougher on organizations like this.  When I have mentioned before that I didn't think their advice was really thinking about what is best for Maya they have denied it to the hilt and said that these are the only options available.  Still, I have tried to maintain my composure and not judge them too harshly.  "Don't forget," I told myself, "you don't know the system here as well as you would in the US, there are cultural differences, therefore don't fly off the handle until you really know what is going on, work the system."

Well, I think I know what is going on now.

This past Tuesday Leo got a call from our family counselor at the school and we were told that one of these schools had a spot open, and that coming Tuesday they wanted to meet with Leo and I to discuss Maya registering at this school.  Of course I flipped when Leo told me this as I said that there no way we were going to choose for a school on the basis that there was a spot open.  I quickly fired off an email to this person and told her we would come to the meeting, but that we wanted the group leader there as well, that we were not happy with their approach and that ultimately we don't have confidence in their advice, as they don't seem invested in Maya at all and what is best for her, only in scoring her IQ and getting her off their service. 

I got the usual denial back telling me I don't understand, etc., etc. and that they really think this is best for Maya now and that it is not about money or making a place available for another kid.  Please, as if I just fell off the tomato truck!

At this point Leo and I decided to contact our family counselor at Maya's former school and just ask for some advice or help.  I wrote her an email which she promptly answered and said that her old school did not advise for ZML school because they did not think this was the best option (and if they did they simply would have advised it).  Their advice was quite clear, Maya is a difficult kid to assess but after two years of observation and treatment they were convinced that Maya needed another 1-2 years in a therapeutic environment and that  she was not ready to go straight into a school environment.  This is why they recommended the school where we are now and they assured us, that they were assured that this would happen for Maya at her current school.  

Two weeks ago Maya's mentor from her old school had a meeting with the new school to discuss Maya and what is best for her and her mentor again said that what Maya needed was therapeutic intervention and that no school would probably be a good fit for her right now and that if Maya was going to develop to her full potential she needs this time to be stimulated and further develop and mature so that she can handle the rigors of a school curriculum and be the most she can be.  The family counselor said that based on what we were telling them now it seems that they are not listening.  She told me something else, which made me burst out into tears.  When this meeting happened two weeks ago, Maya's former mentor, Kim went to visit her in class and this is how the conversation went:

Maya:  "If I were 6 years old again, could I come back to 'The Moon' ? (the name of her class at her former school)
Kim:  "You are not 6 anymore Maya you are 7."
Maya: "If I could make the world turn around then I would be able to be 6 again."

I just burst into tears every time I read or think about this.  Actually two weekends ago Maya and I were lazing around and I was Facebooking and I am connected on FB to Maya's former mentor and now and then Maya sees a post of hers with her picture and is all happy.  Anyway this happened two weeks ago and Maya just stared at the screen with a sad look on her face and I asked her, "who is that?" and Maya told me she didn't want to say who it was and turned away from the screen.  I asked her if she was okay and she said that she just didn't want to look at Kim.  At the time I thought it was strange, because Maya always got excited before when she saw her photo and when I clicked the page away she went back to being her happy self, but I think this must have occurred the week that she saw Kim at school and had this conversation.  Maya has told me many times that she misses her old school and Kim but when you hear your child say things like this, you are hit with it all at once, like a ton of bricks.  

Anyway tonight I received another email from our family counselor, she again confirmed what she said before, they do not agree that a ZML school is the answer and gave us some references for some other therapeutic organizations, one that they have direct experience with and another that they don't but they hear very positive things about.  They have encouraged us to check out these options.  Both are in the private sector which means that her health insurance will not cover the costs as they do with her current and former schools.  There is the possibility though to get direct assistance from the government to pay for this although I am not sure how easy or difficult that is.

At any rate Leo and I have decided that we are not going to agree to a ZML school at this meeting on Tuesday and that actually we are not going to agree to anything until we have had a chance to investigate  these other options.  If this school is really interested in what is best for Maya then they should help us with that.  Either way I am not agreeing to anything under pressure.  

I just keep trying to remember that as messed up as this school is now, they are not strong enough to break my Maya's spirit, she is a happy, sweet, kind, sensitive girl and I just keep telling myself that even though we do have to fight for her, it is totally worth it and that Maya will be the better for it.  

I would not be looking forward to Tuesday if I were them...

1 comment: