Monday, April 2, 2012

More Than Awareness

Today is World Autism Awareness Day.  I'm a little ambivalent about yet another "world" day for another good cause.  Really, I'm not sure how much is accomplished by these big PR blitzes.  I won't say they're not good and even necessary, because everyone should be aware that things like autism are serious issues in our society (and in fact all over the world, whether or not the population is educated enough to even know that autism exists).  I do worry that in our sound-bite society that these "special days" can take the place of everyday discussion and compassion.  Aspergers is a 24/7 reality for our family; autism is a year-round issue for anyone affected by it.  Having a "special day" almost seems to trivialize it rather than highlight it.  So I debated even doing an autism-related post for World Autism Awareness Day.  Then a couple things happened over the past week to change my mind.

One was a conversation I had with a high school student during study hall last week.  I was monitoring the study hall with a couple other staff for one period, and a young lady approached me and we started talking.  Initially it was about teaching (how I came to be a sub), and I asked her what careers she was interested in.  She mentioned art, and we talked about how I am also an artist, but without formal training, and the reasons for that and for my career choice.  Somehow our conversation wandered around to the point where I mentioned that our son has Aspergers, and that I enjoy subbing where I can be aware of what his school environment is like, and get to know his classmates and teachers.  The young lady hesitantly asked me what Aspergers is, and said she'd heard the term but didn't really understand what the disorder involves.  I explained to her about Safety Guy's social challenges, his mind-blindness, his ability to hyper-focus, his single-mindedness, his literal-mindedness.  She was very interested, and said she'd never really thought about how Aspergers affected someone's life.  I enjoyed sharing with her, and it made my day to see her take an interest in my son and his world.  And now there's another student in our school who knows a little bit more about autism and Aspergers, and will never look at people affected by it the same way again.

The other neat thing that happened this weekend involved Safety Guy.  There is a family at our church whose young son has severe, "classic" autism.  "Zach" is about 7 years old and nonverbal, although he communicates quite a bit through tone of voice and body language.  Zach stays in the church service with his family until the children are dismissed to children's church after the worship songs.  Sometimes he makes noises during the music, and sometimes he wants to walk around, and during children's church he often wanders around the classrooms.  His parents would often spend the second half of church taking turns minding Zach instead of being able to sit through the sermon and hymn together.  Our pastor and elders decided that it would be a good idea for our church family to help Zach and his family, to give his parents a break and a chance to relax during church and to help Zach to get to know more people at church.  A couple months ago they put out a call for volunteers who would be willing to mind Zach while his parents were at church, and I was one of the people who signed up.  Yesterday was my first day to be Zach's helper.

When Safety Guy realized what I'd be doing, he asked if he could help too.  He's familiar with Zach from seeing him downstairs during children's church, since when SG volunteers in the toddler nursery, sometimes Zach would come in with them.  It turns out that Zach loves Safety Guy.  (I'm not surprised - SG is a magnet for young kids, who love that a really big kid likes to spend time with them.)  So we spent the morning with Zach. While hanging out with Zach, SG asked how Zach's autism was different from his Aspergers.  We had a good conversation.  We talked about verbal and nonverbal communication, and being able to communicate at all.  I helped SG pay attention to what Zach was doing with his fidgets, the tactile and kinesthetic input he was looking for.  I talked directly to Zach himself, not around him, and included him in the conversation, and pointed out to SG that just because Zach couldn't talk, that didn't mean that he couldn't hear or understand.  SG asked questions about Zach's vocalizations, and how I could tell if he was excited or upset (pitch, tone, and facial expression).  Safety Guy talked to Zach, and handed him a musical toy and watched his reaction, and gave him other manipulatives.  Many times during our conversation Zach would pause and make eye contact with one of us for a few seconds at a time, which I found to be very exciting.  Other times Zach would stop still and listen intently - to what, we couldn't tell, but SG was intrigued by that since he himself is extremely sensitive to auditory input, and can sympathize with not being able to tune things out.

Just before the service ended, Zach wanted to walk around downstairs, and we ended up near the back door stairs.  Safety Guy sat down on the landing, and Zach wandered over to him, leaned against him, and ran his hands through SG's hair - a quiet, affectionate gesture.  Safety Guy said that Zach has done that before, and that he enjoys spending time with Zach in church.  I was so touched.  These two boys, each with their own autistic tendencies and struggles, each in an inner world of their own, both trying to navigate the wider world that is so often overwhelming and frustrating for them, had found their own way to connect and were at ease with each other.

It was a sweet way to end Palm Sunday, the day before World Autism Awareness Day.  I pray not just for autism awareness, but for acceptance for Safety Guy and Zach, and everyone else like them.