Saturday, May 18, 2013

Mt. St. Helens, Parks and Superman

First of all, thanks to everyone for all your kind and thoughtful messages on my last blog post, your caring and concern for Maya is touching.

So, we had our interview on Tuesday and it went fine.  It was largely just some questions from a bureaucrat-trying-not-to-sound-like-a-bureaucrat.

We were told by Maya's friend L's dad that we should make the situation seem slightly worse than it is.  Leo and I talked it over and while we were willing to highlight the challenges a bit heavier than normal, neither one of us felt the need to lie or to make sweeping declarations of how difficult our lives are.

Maya has autism, she's in a special school, a special school for the hardest to learn kids, she functions on a level well behind her peers.  Case closed, right?


The interview itself went okay, it was just a lot of questions:

  • Can Maya dress herself?  yes, she can, but she often makes small mistakes like putting her shirt on backwards or if her clothes are inside out she doesn't realize it and doesn't know how to turn them right side out.  During school we have to dress her because she cannot dress herself in a fluid set of actions, she does one thing and runs around, does something else, half puts on a sock, decides what book she is going to take to school, etc.

  • Can Maya brush her teeth?  Yes, she does, but I go over it for her most days to make sure her teeth are clean.

  • Does she bathe or shower by herself?  She will go in by herself but just to play, we still wash her hair for her and make sure her body is clean.  She knows how to wash her own body but we can't rely on her to do it on her own without us prompting her.

  • Can she tie her shoes?  No.

  • Can she button or zip up her pants or coat?  Zipping she can do if there is nothing obsructing, but if the zipper gets stuck she doesn't know how to fix it.  She can't button anything.

  • What's her behavior like?  Generally she is pretty well behaved, but she has a hard time listening and still will melt down from time to time.  She has to do things in her own time.

This is how they judge whether or not your child is fit to qualify for additional support?  Some bureaucrat in a room, who probably has no experience at all with special needs, for all I know was a transfer from the Parks Commission sits in a room and based on your answers to questions as to whether your kid can condition her own hair,  makes your decisions.

I wasn't comfortable with them asking us questions with Maya in the room, and I asked if either Leo and I could leave the room with her and have the Q & A in private but Ms. Parks said that they wanted to observe Maya.  

So, yeah, put her in a stuffy conference room with not one inviting thing for a kid and force her parents to talk about her and her issues in front of her.  

Leo, who has absolutely no tolerance at all for bureaucratic hoops, even when he knows they are a necessary part of the process, was a ticking time bomb the whole time.  I knew if I even showed even one whiff of impatience or frustration, he was going to blow like Mt. St. Helen's.

So, I put on my best-American tone of voice (how are YOU doing today) and tried to answer her questions.

The whole time doing the interview Maya was quiet and glued to the iPad.  Whenever the woman asked her anything she barely answered in a whisper and made no eye contact.

The whole thing lasted about 40 minutes with Ms. Parks telling us she would liaise with the school and the program we want to enroll her in and give us a decision within 1-1.5 weeks.

After the interview, I talked to Maya and asked her if she had any questions about the interview or understood what we were talking about.  No mommy, I was busy coloring on the iPad.

Thank you, Steve Jobs.

Jumping to yesterday, Ms. Parks gave Leo a call telling him that Maya didn't qualify for the backpack.

See, not disabled enough, apparently I should have listened to L's dad and deprived Maya of sleep and food before the interview in order to trigger meltdowns.

Leo called me and unloaded all his frustrations on the bureaucracy on me.  I let him go, because it is irritating that you have to jump through all these hoops when your daughter has a clear diagnosis and when she goes to a school for kids with cognitive challenges and she has an IQ of 69.

For once, that number should work in our favor, no?

Then, Leo mentions that the athletic practice still has to provide some info for the file.  WTH, they rejected us, didn't they?   So I asked Leo again what they said exactly.  He dutifully regurgitated out the bureaucratic doublespeak, which might as well have been in tongues.  Sorry, I can't do bureaucratic-speak in Dutch.

I suggested he call our contact over at the practice to see if he could provide any clarity.

I feel pretty comfortable calling this guy Superman.

Superman said that Maya, was indeed rejected for the backpack, which is an annual sum of money paid directly to the parents (via a special bank account) where the parents directly pay for therapy and have to provide an accounting once a year.

The Man of Steel said that they've asked for details on the practice in order to process Maya through the national health insurance scheme.  This is apparently a second form of support available to those with disabilities, from the national health insurance fund.  Hard to explain, but those who are terminally ill or disabled, the costs of their care are not covered via individual health insurance policies, this is the socialist way to strike a balance between having no uninsured, keeping insurance companies profitable and the price of policies within reason.  

Superman said that although it is not a done deal yet, in their experience when they ask for these details it means that Maya will qualify for the funding.  He said that he will deal with the request now and we don't have to do a thing.  He thinks in the next couple of weeks, we should receive a written confirmation from the National Health Fund and once we have that letter, Maya can start the very next week.

So, cross your fingers, toes, eyes and whatever else and send out some good vibes for our girl!

I need to look for a sale on Kryptonite.

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