Lost Voices
Thursday, September 17, 2009 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.
Reader Comments (22)
I am so glad I found you! I am so glad I became a blogger. There is so much to learn about the lives of others that touches my heart strings. That let's me unleash my joy and pain. To understand that we all have something so deep and that the scale doesn't matter. It is a discovery, a relief, a lot of love to spread. Thank you for sharing, your heart and your brother's story with me. I cried and I felt your pain and maybe a little of your relief (I hope). Hey and maybe we can discover some uncharted waters to help a lot of people. XOXO
Thank you so much for posting this, you don't know what it means to me to have seen Carly. There is hope.
What a beautiful story! I was having a "why is the world so crappy" moment until I read/watched this. Thank you, thank you, thank you, thank you.
I keep trying to think of what I want to tell you, and I keep coming up empty. I watch that video, and I read about your brother, and I think about my own son - 6 years old, on the autism spectrum, working so hard every day to find his way through life - and I'm... I don't even know what I am, or how I feel, or what I want to say.
Except: thanks for writing this.
Diana, The Doggy Mommy, that is one of the biggest reasons why I, too, am so happy that I stumbled into blogging. It has launched an incredible path of discovery and creativity that I don't think could have happened any other way.
Legs, have you read http://ballastexistenz.autistics.org/" rel="nofollow">Ballastexistenz? It is a weblog written by an autistic woman who many non-autistic people would dismiss as deficient but is actually an incredible communicator. Specifically, watch her video "http://ballastexistenz.autistics.org/?p=287" rel="nofollow">In My Language". Her insight and her ability to share it is invaluable.
Jamielynnlynn, as much as it broke my heart for my brother, it also gave me so much joy to see this family finding their daughter.
TwoBusy, please don't let my brother's earlier struggles in this story dishearten you. Communication about and resources for autism are so much more plentiful these days than they were when my brother was your kid's age in the mid-1970s. My heart is with you, your family, and your son. You will all find your way through.
We so often take for granted the power and privilege of communication. Beautifully written!
Thank you for sharing something so personal and precious with us. We always have so much more to learn about each other.
The story of Ward's one ward absolutely broke my heart. I cannot imagine what your mom must have felt at that moment.
as it is with you, very well written with a bucket of love.
it's good to share this, i am often surprised by how many people still think autism is something to be ashamed of. it's just how some people are borned :)
there was an episode of this american life of a mother that didn't tell her son he was autistic until he was 14 or so. if i can find it i'll send it to you, it's interesting.
This post squeezed my heart so hard that I forgot to breathe for the latter half of it.
It *is* startling, the way our grief chooses to make itself known, and its timing is so very haphazard.
This is one of the most beautiful things I've read in a long time, thank you.
Schmutzie, thank you for sharing a little of your brother with us. I can only guess at how costly it is to share stories like this one. I'm accepting it as the gift it is.
You've made me think of one of the very few times I've heard language from my son. It was during the worst period of his life, pre-diagnosis. He was about two years old; in constant pain, sleepless, aggressive, adrift. He had lost the ability to say even the simple words he'd had before, like "bird" or "ball". One day I was surprised to hear him say "Sa-tur-day". He practiced it over and over during the next few days. And then one day I heard him say to himself, "Daddy plays with me on Saturdays."
It came out so casually and quietly and without any special effort. It hung on the air and then was gone for good. He never said it again, has never said "Saturday" or anything even approaching that kind of complexity in the years since. Currently he can say "go" and sometimes "yes".
I find myself wondering if I could have really heard what I heard, knowing that he wasn't repeating anything we'd ever said, that we hadn't yet tried to teach him the days of the week, and that the kind of abstract thinking that sentence requires would be a stretch for any two year old. I've turned those six words over and over, looking for context, for clues, for insight into this little boy that I love so well and know so poorly.
A friend of mine recently shared this Barbara Kingsolver quote with me:
The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.
And we talked about hope for a little while, and I said I was wary of it. But if I can build a roof to live under, I think it would be called Daddy plays with me on Saturdays.
Oh, Schmutzie. I am sitting here, tears in my eyes and lump in my throat. Thank you for this so human, so amazing, so life affirming post.
Rene, you got me with this sentence: "...if I can build a roof to live under, I think it would be called Daddy plays with me on Saturdays."
It makes me wonder what my roof is built of.
Schmutzie, I'm so glad to hear your brother is happy now even if he had some rough times. I have a cousin with CP and a cousin with autism and you wonder what they might do or be if we could just find the right tools for them. But what they are is still beautiful.
Rene, that's an amazing story.
My daughter made friends with this lovely, lovely girl who can't speak but understands. And somehow she communicates with her mother, but without words. She uses some kind of signs that she invented that her mother seems to understand, although it is not ASL.
This touches me deeply. I have a cousin with Autism and it is like a tiny porthole into their world. We, who know nothing of it, have a hard time understanding.
I am so inspired by Carly as she is giving those who need it most a voice.
Thank you for sharing your brother with us. I can't stop the tears.
Ward's one word, I meant. Sorry.
This was really beautiful! I hope that people's comments encourage you to share your experiences with your brother more - I think it means a lot to those who share your experience and even more to those who have no idea what it's like or how to interact with people with disabilities. Thanks :)
This video, and your post have me in tears. My younger sister, Stacy has cerebral palsy, epilepsy and experienced a stroke in utero and another when she was 9 month old. She's possibly very mildly autistic, although my parent felt that putting her through testing for another malady was just too much. I see so much of her in Carly's story and in yours. Thank you for sharing.
i, too, have a cousin with autism. He's 42 now and lives in a group home where he seems to be comfortable. He comes home to visit alot. His sister and I grew up baby sitting him and getting into trouble. I don't even know what to say if he is in there with as much intelligence as this girl and we have spoken to him like he is a child (with much love) all of these years. Makes my heart ache.
Peh. Blogger is fucking with my comments.
Anyway. The essence of what I was saying is that your post is lovely and sad and that nothing amazes me more than when language and mutual comprehension comes where there was none before.
(In my case via a language explosion of my son, but watching that video moved me so deeply).
your words about your brother really struck me. for a few years i worked with young children in the field of physiotherapy, it was so many many things, hard and beautiful at times and sad and just hard, the not knowing what could help. you have given a glimpse into your life and his and i thank you for that.
I love this post. Thanks for sharing- it is so touching. Before my daughter spoke, before we knew that she would, I often wondered what was going on in her head and couldn't wait to hear it!