Thursday, August 2, 2012

Tokens

Can J-man ride a bus?

It started out with that simple question.  Is J-man capable of riding a bus... a regular bus... without supports?  With a para?  Or does he need access to special education busing?

I was preparing for J-man's IEP meeting.  J-man gets TWO of those... one for his home district and one for his charter school.  The IEP from the home district can act as his charter IEP, but there are two meetings.  Two opportunities to get it right.  Or wrong.  Two opportunities to give me an ulcer.  One thing about IEPs... especially initial IEPs... is that they set the stage for the year.  It is important to get it right.

Big Daddy and I have agreed that J-man will not be taking a bus this year.  We are helicopter parents, after all, and the idea of putting him on a bus is a little like telling him to go rent his own apartment and get a job.  Not gonna happen.

But when it comes to the IEP, getting busing secured it pretty important.  It is an expense that districts don't relish, and yet all children are guaranteed transportation to school by law.  So if a child cannot be safe or tolerate regular busing, special education busing is the accommodation needed.  If you don't address it from the get go, and then later you need it, it becomes harder to justify.  

I was uncertain if we could require special education busing with a charter school (we can).  And we aren't planning to use it anyway.  But for some reason I just know it is important to fight for it. To have it there when we are ready for it.  I spoke to a couple of advocates at a local agency and the message they gave me was clear:  it is very important to emphasize worst-case-scenarios for J-man.  Emphasize how disabled he is.  Make sure you  don't give them any reason to deny him a service.  No hope.

It made me sick to my stomach.

How do I talk about my Amazing J-man that way???  How do I present him as being completely unable to manage a bus, or a classroom, or a playground, without supports?  Because to be honest, I don't know.  To be honest, some days he might be very capable?  Sometimes it works, sometimes it doesn't.  We are proactive people:  hope for the best, plan for the worst.  Not expect the worst, but know it could happen and try and have a game plan for it.  And a lot of the time we get the best.  Or at least the good.  But we don't invite trouble either... we pick our battles and select where we will challenge him and allow when we need to back off.  We are child led so we listen to him.

I was depressed.

And then, a ray of light!!  Or at least, good sense!!  A posted my woes on my Facebook page and asked my ASD posse to help me out.  Karla, an autistic adult and brilliant owner of Karla's ASD Page provided me with some of the best insight I have seen.  Here it is...

Let's say you have two children: Jimmy who is neurotypical, Bobby who has autism.

Each child gets 10 tokens for their day.

For Jimmy to ride the bus, it takes 1 token.  So for the rest of his day, he has 9 tokens.  Nine tokens to learn to read (maybe 2 go there), to sit still in circle time (1 token), to eat lunch with his friends (3), to play and be social  (another 1)... and so on...

For Bobby to ride the bus, it takes 5 tokens.  So for the rest of his day, he only has 5 tokens left.  Can he ride the bus?  Yes.  But what does it COST Bobby to do that?  What won't he be able to do because he used so many 'tokens' keeping it together to ride the bus?  And is riding the bus a priority for those tokens?

Obviously, the answer is no.

To me, her answer means that we pick the important things to get the tokens, and the less important things we ease the cost of.  Support, alter, or omit those things that cost too much and don't provide a real benefit.  Seems to make a lot of sense to me.

I presented this analogy to the home district IEP team (and gave Karla full credit!!) and .... honestly... I think jaws dropped.  The SLP wrote it DOWN in her notes, she liked it so much.  I could see that this perspective was greatly appreciated and was a perspective that they had never heard before.

And he got busing.

Not that we are gonna use it.



4 comments:

Abcdef said...

Thank you. I love this!!

Abcdef said...

Thank you I love this!

Michele said...

ahh the "spoon" story by another name - good analogy and sounds like it hit the spot for your purposes http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Funny - read these both days apart. Filing it away for when needed

Pia said...

Wow, the spoon theory was awesome! I had never read that before! Thank you!!!

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