Turning the page

We were the lucky ones.  We had a district that opened their arms to us.  They worked with us and respected our concerns regarding what we thought Sawyer needed.  If there was a silver lining to the stress, emotion, and uncertainty of the future of our son, we were certain that like the district I worked for that we were in the best place possible.

I will openly admit that we hired an advocate for Sawyer.  We did so to ensure that we had an independent voice during our process with his team.  We had experience but once you’re holding your IEP, you have a rush of emotions that run through you.  You doubt what you know, you doubt what you have, and ultimately you doubt what you want.

This was hardly the fault of the team we worked with.  They were incredible and we were and still are blessed to work with them.  It was just a time that we were in panic mode and afraid.  Even the best plan wouldn’t have been enough for us because of the emotional state we were in.

The conversations with our advocate were private.  Our conversations with Sawyer’s team remain private because our goal all along was to be educated on what would best support Sawyer.  

Life for us at that moment was like viewing a landscape through a kaleidoscope.  Any which way we looked, it appeared different, which led to more confusion and frustration.  We needed help and weren’t shy to admit it.

Like I previously said, were are fortunate.  We had concerns about services, supports, and ultimately the direction of Sawyer’s future.  With the guidance of many, we found common ground across the board.  For that support, from the district, to the staff, to those who embraced us, it brought hope that our page could be turned.

The label

I have an eye condition called keratoconus.  I was diagnosed with it in 2008.  If you Google it, you will read about a thinning cornea and the problems with night vision.  This is true and it is also true that while I waited for my custom made contacts that my eyes were in pain from the moment I woke up until I’d get home from work and sit in pure darkness until I woke up to do it over again.  

It sucked.  However, I waited for new lenses and could openly share with my eye doctor that I needed a solution.  So when I go to any doctor appointment and they ask for any medical conditions, I list keratoconus.  That’s my label.  I have an eye condition.

Upon our first IEP (individual education plan) meeting for Sawyer, I was anxious.  It didn’t matter how many times I have met about students in my career, I would be on the other side of the table.  This wouldn’t be me talking about my school life observations.  This meeting would launch Sawyer’s life as an Autistic child in a public school setting.

It was scary.  I was nervous of the unknown.

Those around my wife Kellie and I would just say how great the schools would be for Sawyer.  How well their special education department would be for him.  How well they do with children of special needs.  Most importantly, how I will know what to do since I have a background in education.

Here was the thing, any school can have a phenomenal special education team but that doesn’t always equate to meeting the needs or expectations for your child.  There is a reason why it’s an IEP and Sawyer being Autistic didn’t mean that there was a template of services that would transform him over night into a success.

Let’s also point out that there is a huge difference between Jon Rubin the grade 4 teacher and Jon Rubin the father.  They aren’t the same person nor should I be.  When it comes to my children, I’m their dad.  Everything else is secondary though it has taken many years to learn how to put them first.

So I’d say going to our first meeting that I had wishful thinking on getting everything Sawyer needed based on the premise that his school would know him because of their experience with Autism.

That all went out the window as the moment I opened his IEP document that it was about as thick as Cliffs Notes to a 3 stanza poem.  There wasn’t much in there.  I looked at Kellie and she had a puzzled look on her face.  It was almost like one of those “that’s it” looks.  

We knew that Autism Spectrum Disorder was in black font but where was the rest that fell under the label?  Would 13 pages of a profile and service descriptions take Sawyer to new heights? 

This was the moment that I knew that the label wasn’t just Autism, it was Parent and we would not just accept the accepted.