Monday, February 21, 2011

Andrew's spectrum of autism

A local photographer friend came up with a wonderful idea. She would photograph children with autism, with the intent to tell their stories, alongside their pictures. Kristin's photographs of Andrew do such a beautiful job of capturing who he is.  See some of them on her blog, which can be found here.  On the morning we shot, the autumn sky was gray and the air still damp from the previous night's rain.  Andrew doesn't typically look directly at cameras, and Kristin was okay with that.  In fact, that is what she wanted. Her goal was to capture who Andrew is, and I think her photographs beautifully encompasses that.  It wasn't in the plan that I be included in the photos. But, he ran towards me for reassurance at one point and I held him close and she captured that moment so beautifully.  It is my blog's profile picture and it sometimes brings tears to my eyes to see the bond Andrew and I have captured so poignantly.

There is certainly nothing glamorous about autism. But, there is a whole lot special about Andrew (and the many other people in the world who live every day with an autism spectrum disorder.)  I am constantly in awe of my little guy and of what he accomplishes. I try not to worry too much about what the future may hold for him.  That is harder, as the older he gets, the more separate he appears from his peers.  I wonder "where will he live, will he have a job?".   Autism breeds lots of uncertainty.  This may not sound, or even be, rational, but I will never forgive the many providers who told us when he was preschool-age that he was "one of the kids who is likely to outgrow the diagnosis."   He didn't, and here we live, autism defining so many life moments in our family.  The "perks" (a handicapped parking placard to use when we are with him and a "special" pass at Storyland which allows him not to wait in line but earns us the disgusted looks of other park patrons are the only things that come to mind) are outweighed by the challenges. These include, in no particular order,  tears (mostly his, sometimes mine), the tantrums (mostly his, sometimes his sisters, and occasionally mine), and the heartbreak of wondering why (all of us except for him who knows nothing different) this happened to him and to our family.

There is so much we simply can not do thanks to autism's effects on my family. I could care less "how" it happened (and vaccines are not the culprit that trapped him in this world). I just wish I knew better how to manage it.  There are some days when getting him to put on his shoes and walk to the car, more or less go out anywhere, are stressful enough to make me wonder if that cup of coffee (and a chocolate chip muffin for him) that we were going to Dunkin Donuts for are worth it.  There is constant judgment directed towards parents of children with autism. Are we doing enough? Maybe not doing the right things?  The "professionals" who judge have never walked a mile in our shoes, so I find their proclamations unearned.  The people at the grocery store who give unsolicited advice, or those at my former small church who cast disapproving looks at him, or even the family members who alienated him long before he abandoned the idea of wanting to see them, the list of people who unfairly judge Andrew (and by extension me) is long.

Thank you, Kristin, for allowing Andrew to be a part of your Broad Spectrum Project.  I hope it can bring more awareness about autism and show the world who these children are, that they are beautiful and smart and joyful in their own ways.