Saturday, August 10, 2013

"Red Lights" - My Other Blog...

It's been almost nine years now since I wrote my first blog post.  It seems so long ago... there was no Facebook or Twitter or Pinterest then but there were message boards and chat rooms that had opened up a whole new world for parents of children with disabilities.  Through these spaces I have met and remained friends with some amazing parents of children with Down syndrome.  We have shared the fears and celebrations and many of us took to blogging as way to keep each other and our families informed when the opportunity presented itself.  My blog was titled Red Lights to represent the lessons that I had been learning from my son (Mikey) about slowing down and enjoying life.

Eventually, I also began a teaching blog that went through the names "Building a Program that Works" and "Living and Learning" before evolving with my own teaching practice to "Eliminating the Box". 

As I can start to see the end of my graduate studies, I have been doing a lot of reflecting on both my life and my career to this point.  I have always known that Mikey has a deep and profound purpose and meaning in my life but as I have spent some time reading back through the things that I wrote on my Red Lights blog, it became clear to me that I did not stop writing because I couldn't keep up two blogs... but that I stopped writing at the time that we added Autism Spectrum Disorder to Mikey's label.

Who Mikey was did not change with that label but in the blink of an eye I felt like I went from having a child with Down syndrome to one with Autism and I quickly learned that the general public's response is very different to the two labels.  When I mention Down syndrome, the response goes something along the line of "Oh... they are so loving and happy all the time" (to which I want to invite them to spend a few days in our home...) while the response to Autism is something along the line of how hard that must be.  Both are wrong (but I won't go in to that) but the later had a deeper and more negative impact on me as a parent and a person.  Suddenly, it seemed that rather than an amazing, funny, creative, determined little boy he was being seen as a burden.

I believed the diagnosis would help us to better understand Mikey and that we would use this information to create a world with him that would work better for him.  Instead, his behaviour tracking form was changed to the one that was used for all kids with autism to ensure that regulations were being met.  It seemed that "behaviour" and "autism" were used almost interchangeably.

I had been prepared for Down syndrome.  In fact, I had chosen Down syndrome.  I purposefully set out to adopt a child with Down syndrome back in 1999.  I had not been prepared for Autism and I was just coming to learn more about it as I did have one student with Autism.  Mikey was not a different person after the diagnosis but it seemed the label to Autism meant that others had different expectations of him.  For a stretch of time after he got the diagnosis, I questioned if I had done the right thing by pursuing the diagnosis. 

In one of my last blog posts on Red Lights I shared the following song...

I was introduced to the song at the end of the movie called Adam...

It's a love story with a bit of a surprising ending. The girl in the story convinces Adam to pursue his dream and when he achieves it, he asks her to move with him.  She is set to go and at the last minute Adam says something about how he needs her to go with him because he can't do it without her.  She repeats the line about him not being able to do without her and then says she can't go with him.  He ends up going alone. When I watched with a friend, her take on the story was that she didn't want to be burdened by him and his neediness. In that conversation something flipped for me in regards to better understanding how different people will see and use labels differently. For me, what she did was the deepest act of love possible. She loved him and wanted to be with him but as long as she was with him he would not believe in his own independent ability... and so she forced the situation, gave up what she wanted and sent him off to pursue his dream on his own.   

The last scene in the movie shows him a year later, having established a new and independent life for himself.  He has a job he loves rooted in his passion area, new friends, a home of his own...etc.  He is seen reading a letter from this lady who had such a profound impact on his life and then the song kicks in.
You know there will be days when you're so tired that you can't take another step.  Night will have no stars and you'll think you've gone as far as you will ever get...
Go where you wanna go... Be what you wanna be... If you ever turn around... You'll see me.  
In that moment I understood that the people's beliefs and opinions of the label didn't matter.  It wasn't about the label and the things that he couldn't do.  It was about Mikey and the person that he is and the things that he can do.  I needed to stop buying in to a system that focuses on remediation and trying to fix what we have socially defined to deficits.  This is the hard part to say as a parent... I needed to be okay with where he was at and part of that involved not buying in to a system that defines his path for him. 
The hardest part... I needed for him to be his natural environment without everything being pre-defined so that we could let him lead us and all begin to explore with him where he is going to go in this world.  It goes against every instinct that I have as a parent and even as a teacher.  I had bought in to the idea that we need to be proactive and head off all potential problems.  I believed the only other option was to be reactive.  But it seems that maybe the concepts of proactive and reactive sit in the middle of simplicity and what this should be about is actually extremely dynamic and complex.  By trying to make it simple, we may make it easy in that moment but we end up limiting potential. 
It's now been 3.5 years since the diagnosis and two years since we moved him from receiving his education primarily in self-contained classroom to his starting point being the general education setting.  The differences in him can only be seen by those who truly know him but to those of us who truly know him, the differences are profound.  Some of it can be pinned to just growing up but as his mother I have the whole picture of what his personality has been like in different educational settings and this goes deeper than just developmental milestones.  It reaches down to how he feels about himself. 
Each summer I try to work with him on his communication system and each summer he we don't get very far probably because I'm pretty in tune with him and he knows that there is an easier way to get his point across with me.  This summer we started from a different place... I asked him if he wanted to learn to use the devise so he would be able to talk more with his friends at school.  He sits with me on the couch while I talk to him with it and watches my every move.  He goes to it to talk to me (still mostly requests).  He will purposefully make mistakes with it so that I have to re-engage back with him.  He is now starting to just explore it and see what is in all the layers of the system.  And this morning... he repaired the sentence he was working on. 
I know there are many who would believe that we should be looking for "the best of both worlds"... that we could achieve the same thing if he just joined the "regular class" for options... that the gap is too big academically for him to be in junior high core subjects.  I will not deny that we do not yet have the academic modifications fully figured out and that at times the gap does seem overwhelming... but the bottom line is that in the end I am kind of thinking that there is more to it then being either proactive or reactive... that what we actually need to do is think in terms of being responsive because that is how we ensure his autonomy.  So it means we need to put in him in contexts where we might have no clue what to do because that is the only way we are ever going to figure out what to do. 

In the end it all makes sense that I moved from writing a blog about Mikey to writing a blog that reflects the bigger picture of my learning. Mikey's story is his to create and maybe some day it will be his to write if he so chooses. My job isn't to write his narrative for him but rather to support him in his journey so he can find and live and share his own story in whatever way works for him.  I sometimes feel a sense of loss for not continuing to write on Red Lights but in this moment I feel like the fact that I stopped writing it is a reflection of both mine and Mikey's growth.  
I will not deny that the fact that I'm both a teacher and a parent sometimes creates tension even in myself.  There are times when I question if I'm too close to all of it to be professional. Does my role as a parent interfere with my professional judgement?  But there are also many times where I think who better to be doing this then someone who has to look at the larger picture that extends beyond the handful of years that a child is in school.


1 comment:

  1. Monica! I'm so excited that you are blogging again and I am even more excited to be able to learn so many ways to go about being inclusive in the classroom. I am so happy for both you and Mikey that he has begun to really learn how to use his communication device so that he can communicate with friends at school in a better way. :) You have so much to offer so many and I know I won't be the only one who is thrilled to enjoy your writing again and enjoy your reflections and thoughts. Thank you -- welcome back! ~Beth