Friday, May 25, 2012

The Master Key

Maya:  Mommy, when I first started swimming I was scared but if I learn how to swim under water really good, can I get a swim diploma?
Mommy:  of course you can honey, you're doing great with your swimming.
Maya:  When I was 6 years old I needed an inner tube to swim and now I don't need one.  Do you think I can get a swim diploma?
Mommy:  Of course you can get a swim diploma, you just have to keep learning and keep doing and then you can try for one. 

 I spend a fair amount of time blogging, that is writing blog posts but also reading them.  And like anyone else, I am drawn to bloggers whose life experience has something in common with my own, therefore I spend a lot of time romping around on blogs of parents dealing with children of special needs.  I relate to some of their experiences as they are similar or sometimes even mirror my own, I learn about issues an d reading other people's experiences or views, even those different from my own help to stimulate my own thought processes.

The other day I was chatting with a colleague about my blog and she was asking me what it was about.  Of course most of my posts focus on my parenting experience, my child and our family's journey through the maze of autism.  This colleague then asked me what my angle was in blogging.  

I don't really have an angle.  I told this friend that while I do think I strike a chord of poignancy here and there, that I didn't feel my blog had any real concrete message or angle.  

But, this got me thinking about an angle.  Do I have one?  

I still don't know the answer to that question but over the past week or so since this conversation, I've been thinking about it and rereading quite a bit of my posts about autism, trying as much as I can to approach them as a first time reader to see if a theme or angle will jump out.  

So I pulled my old graduate student trick out of my hat.  I read all my posts with the label autism the same way that I read the hundreds of books I needed to read to get my Master's Degree.  When I first started my Master's Programme my graduate advisor gave me a reading list with about 400 books on them.  He told me, listen you probably won't read all of these but these are very important books covering a lot of historical topics.  Your focus will be in your primary area of study of course but if you truly want to succeed you will need to read much more than your primary area of focus 

I read the first and last sentence of every paragraph and as I read I wrote down any thoughts which passed through my mind while reading.  It sounds like a silly exercise but you really learn by reading this way what the themes of the book are in a quick way and then you can go back and explore parts that you find really important or fit in with themes you want to highlight.  

So these are the words I wrote down more than three times while reading more than 50 blog posts:

not knowing
feeling good
the future

And I started to think that maybe I do have an angle.    

So much about autism feels out of control.  There is a feeling of helplessness which just comes with the territory.  Some people's sense of helplessness is stronger than others depending on the situation they are dealing with and many other factors.  The future for our kids is often uncertain because we are not sure what our kids are capable of or how the process of growing up will affect their challenges and those who do have certainty often have the certainty of the variety that they know their child will not be able to live without help as an adult or much worse, they fear for their kids' future.  

I do think I've always maintained that I am uncertain about Maya's future.  I see that she is growing, but is it fast enough or far enough?  I don't know.  I also don't know if I am doing everything possible to help her get there, where ever there may be.  I see parents who are doing much more than me, who are finding every therapy possible and using every moment of the day as an opportunity for their child to develop, you have parents that are warriors for their kids.  

But trying, helping, encouraging, focusing on her happiness.  Those are things I can control and perhaps that is why those are my angles.  Because those are things I know can do.  

But I do truly believe that these things are the keys to Maya's development.  Everyone has challenges or disappointments in life autistic or not.  Learning how to deal with that, how to cherish victories but not destroy yourself in defeat is a huge key to living a happy life.

I don't have all the answers and I am certainly not the world's foremost authority on autism.  Often autism baffles me, it is so hard to get your head around what it is or isn't.  The line between what is autism and what is your kid is one that is drawn in sand, it is forever washed away by water, wind and it gets trampled on by people walking down the beach.  You redraw the line but it is often not always in the same place, sometimes it is impossible to find the line and sometimes it is nearly impossible to find your kid.  

But what I see with my daughter is that her autism often manifests itself in anxiety and fear.  Fear of the unfamiliar, fear of new things, people, circumstances.  That fear makes her freeze in her tracks and keeps her from just taking a leap and worrying later as others do.  Over the past 4 years since her diagnosis, I've seen her go from a kid who hid under the table, who turned away and steadfastly refused to try anything which scared her to a kid who, still needs a lot of plugging, preparation and encouragement but who will close her eyes and grit her teeth and take a step forward.

So I don't know everything, but I know some things.

And I think I've stumbled on a huge one here.  

1 comment:

  1. I love this, Dana.
    I love your analysis and self-knowledge. Most of all, I love that Maya has made such an amazing transformation.

    Really, we can't ask for much more than the courage (and ability) to try, right?