I came across this amazing young woman named Carly this morning at Pacing the Panic Room, and when I watched this clip from 20/20, it brought up an ache in my chest that I had nearly forgotten was there:
Carly spent the first 11 years of her life unable to communicate because she was completely overwhelmed by her autism, and then one day, without having been taught to, she began to type. Her family and therapists did not even know that she could type words, but there she was telling them that she was in pain and wanted help. She is now in her mid-teens and has a blog, Carly's Voice, and a fairly active Twitter account.
Watching her bang her head and flail and make loud noises and then turn around and be able to share of herself in typed words squeezed all the blood out of my heart and left a gaping ache where it used to beat. My older brother has autism which is further complicated by multiple issues including oxygen deprivation at birth, cerebral palsy, epilepsy, and scar tissue on his brain from strokes he had in utero, but so much of Carly's story still resonated with my experience with Ward.
There is an obvious intelligence in Ward's eyes that belies his spasticity, bent posture, and grunting vocalization. He has a passion for music that has had him nearly bouncing his bed broken when his favourite singer hits a particular high note. His eyes would flash mischievous just before he nearly choked from laughing when we would discover the chaos he could create with a squeeze bottle of ketchup, raw eggs, and an unattended refrigerator. When I used to read to him out of the Audobon encyclopedia, he would commit himself to the rare act of sitting still, fingers pressed together as I told him about the efficient flying style of the albatross.
This same boy smashed himself against the floor until the carpet was dark with his blood. He put his head through the hallway wall into my bedroom. He bit through glass cups and drank detergent. He was able to speak only once since he was four years old, and that was in his mid-teens when he grabbed my mother hard around her face and used all of his body and mind to say Mmm-mmm-muh-muh-muh-MOM.
There is so much more inside him, a boy now a man turning 40 in November. As a teenager, he wore his frustration violent and loud. It was during that time that I saw him cry, and only that once. Since then, he has grown and mellowed and become a happy man with a quick smile and joy to share. It is a relief to see him this way now after all the anguish I witnessed in his adolescence.
I spent hours talking to him when I was a kid, wondering what thoughts were caught behind the various masks of his disabilities. Hearing Carly's words thrilled me for her and what that might mean for other people with autism, but it also horrified me to think of all that Ward has never been able to say. It finally hit me this morning just how much I have missed of who he is because neither we nor he could find his voice, and I realized my grief while watching another find hers.