Monday, April 6, 2015

Everything I Ever REALLY Needed to Know

Welcome to April: A Month of Titles!



April is: National Autism Awareness Month.
              The Month of the Military Child.  
              National Mental Health Month.  
              Occupational Therapy Month.  
              Better Hearing and Speech Month.  

You probably didn't know all that.  Or, maybe you're like me and spend time in waiting rooms plastered with brochures and pamphlets about the aforementioned Month of Titles.  Maybe you've read about all the things that seem so easy to so many people that are actually quite complicated and can be thrown into chaotic disruption by any number of seemingly minute differences in body chemistry and brain function.  There's enough information out there to make your head spin if you're like me and choose to read it.  If you are, then allow me to introduce you to another April title:  Alcohol Awareness Month.  And not for nothing, but it is also (dovetailing with the last title, perhaps?) National STD Awareness and Education Month.  Party responsibly, everyone.

In these brochures and fliers and awareness campaigns, we learn a lot.  Or maybe not.  Maybe we only learn a sound bite that we can easily remember.  Or maybe we only learn what color ribbon we should be wearing to support the cause.  Maybe we only identify awareness with a color for our porches.  Awareness may only involve a day rather than an entire month for some of us.  Though, of course, autism and any other condition to which a month has been designated, does not only appear for a month.  I'll be hanging with autism and military kids 24/7/365.  And there is no awareness campaign that could ever teach me more than that time together has.  Because that time together has taught me more than facts, studies, brochures, commercials, events, celebrity appearances, fundraisers, and walk-a-thons ever could.  The time I have spent being a mother to Sweet Girl and Little Man taught me everything I ever really needed to know....and sometimes didn't want to.

1.  There is a vast and global autism community that is about as cohesive as Congress.  This was shocking to me.  While it's true that autism runs a wide spectrum and affects people in greatly varying manners, I naively thought everyone who was navigating this different parenting journey would be open to the greatly varying parenting choices being made.  I was wrong.  Moreover, I should have known better.  Humans are humans.  We do not like what we don't understand (in fact it scares us - name the movie lyric!) and we often negate the choices of others to validate our own.  Humans dealing with autism are no different.  I have learned that it is important to be informed of both the ideas and practices with which I already agree and with those which I have no experience: this is uncomfortable, but it is necessary.  Growth is not easy.  Sweet Girl taught me that.  And we do not grow if we do not challenge ourselves.

Is it wrong that I still find him
sexy in this picture?
2.  What we do not know about autism is more than what we do.  This is true of many things.  Actually, I think it's probably true of all things.

3.  Communication is not always about words.  I've written about it several times.  I love all kinds of words.  I love the process of stringing them together.  I love sorting through the grandiose and odd structure of the English language to find the perfect gem of a word and placing it in the perfect setting to make a sum greater than its parts.  I haven't figured out how to do that yet, but I still like to try.  Words are an amazement to me.  So imagine my melancholy when Sweet Girl struggled with words to the point of frustration and silence.  Now I understand that she never stopped communicating with me, though she may have been silent for a period.  I just needed to learn a different way of listening.  Once I stopped focusing on the fact that she couldn't do something, I was able to see (and hear) what she could.  It was a different way.  It still is a different way for us, and we are still learning how to refine our particular method of communication, but that does not make it any less effective.  This is something that we all can learn through acceptance rather than just awareness.

4.  Fair is just a four-letter word.  I teach middle school students.  "Fair" is possibly the most over
Everyone should get to see baseball!
used and wrongly defined word in the English language.  Many of my students perceive fair as everyone being treated the same.  That everyone gets the same support and it will look the same all the time.  Middle school students aren't alone, however, many adults often use the word "fair" when they mean "same."  Teaching our children this idea is detrimental to their critical-thinking and their ability to empathize with others.  Fair is not the same.  If one student falls and scrapes their knee, do they all need a band aid?  Learning disabilities are invisible scrapes that can be helped by the band aids of accommodations.  Everyone does not need them.  Some students get extra time on tests because they NEED it.  Some get one-on-one help.  If another student wants to say that's not fair then they don't understand what that word means.  If we were to take the 'fair is the same' position, then all students would have the same abilities and be able to be successful in the same way.  THIS IS NOT HOW LIFE WORKS.  We are not the same.  The differences are what make us unique and wonderful and stubborn and deliciously us.  If life were fair in that way, there would be no illness, stress, family struggles, wealth inequality, hunger, or poverty.  It's not.  All of those things are real and affect people who can not control them, creating a constant uphill battle.  Fair is doing all that we can to level the hill a little.
Love this book!
5.  The struggle is real.  Sweet Girl and Little Man both have challenges that they will face everyday of their lives.  That's ok.  They are up to those challenges - most days anyway.  But many people will marginalize these challenges because they are invisible.  As with many conditions: depression, anxiety, fibro myalgia, internal illness, the naked eye can not detect the problem.  Sometime between birth and two years old, Sweet Girl's brain re-wired to flight-or-fight mode.  To her, the majority of the world is perceived as a threat.  Anxiety is pervasive.  The ordinary is seen as dangerous to her senses and her body reacts accordingly.  I do not share this struggle and so I can only help by understanding that her perception is different than mine.  I support her by offering comfort and routine.  I try to help prepare her most things.  But there is a giant world with a myriad of experiences and I am just not capable of preparing her for all of them.  So I try to let her know that I understand when it's too much.  That there are sometimes when we will have to postpone the day's battle to have the nerve to continue the war.  I try to let her know that we have different experiences but the differences don't make hers less real; what my eyes can not see, my heart can feel.  Just because I do not see the imaginary dragons you constantly slay, does not mean that I can't feel your struggle, admire your victories, and bolster your setbacks.  I suppose that, right there, is all I ever really needed to know anyway.  My leaky eyes should not be the part of me that decides how to proceed; it should be my arthritic heart.  The rest is just extra.  Maybe we can all do a little more feeling is believing, and not just in the month of April.