Never miss an opportunity to reflect peacefully, I say
Today, on this earth, out of any of 7 billion people I could have chosen to write to, or about, or for, I am writing for just one person, only one. For you, the little boy in my photograph trapped behind those unbelievably expressive and intelligent eyes, I achingly pull forth these words. I don’t know if you will enjoy them, or even ever understand them, but I write hoping that one day you will.
I am looking at your photo now, the one that haunts me so much. Generally you are a happy, laughing child, but this image reminds me that an impenetrable dark barrier exists between your lips and this world. You didn’t ask for it, and you certainly didn’t deserve it. The part of you that cuts you off is entwined in who you are, at the core of you. Your life may perhaps never get easier – but I believe it will.
I believe because I see in your eyes and actions what cannot be expressed with your words. I see strength, I see dignity, I see determination. I see it every day, in everything you do. Until the day I die I will praise you and appreciate that you showed me what real courage means – that even if you are beaten before you begin, you don’t give up, you keep trying. And being able to finally communicate with the son I thought would never talk is humbling and inspiring, it is the gift your courage has given to me.
You were born two months early, after a pregnancy filled with complications and terrifying problems. They had to take you out of your mom when her womb ruptured; I nearly lost both of you. I loved you from the first day I met you, lying in that hospital, alone in a box under the lights and the machines. You were my son! So small, and yet the biggest event in my life. I had never seen anything so beautiful, or so perfect.
Now here we are, eight years on.
I look at your picture.
My beautiful, perfect – autistic, son.
How do I ever explain to you? How can I ever explain what life has done to you, for no reason, for no purpose?
There is so much I need to say to you. I want to tell you you are a gentle, thoughtful person, who loves to laugh and to play. You are helpful, intelligent, and generous with your affection. You impress me every single day. It took you six years to learn to speak. I watch you struggle through what you want to say, watch the frustration show on your little face. But you know by now, I would sit with you until the stars come out, to listen and work out what you are saying. I will always listen, and I will always understand. And I admire your patience, you keep trying to get through to me without irritation or anger when I’m slow to comprehend; sometimes you sigh, and begin again, and we push through the fog until we find each other, and then you smile, the sun comes out, and my head spins with the beauty of it all.
I want to tell you how valuable you are. Your mom and I gave up our careers, our friends and family, and our home, to take you across the world so that you could have a better life and a better future in a country that takes autism more seriously. You made so much effort for us – in therapy, and learning, and overcoming your disability that you deserve all the effort we can give you in return.
I want to tell you it’s ok that you can’t make friends, it’s ok that you get anxious, it’s ok that you can’t enjoy simple good health, may never marry, support yourself or protect yourself from unscrupulous people.
It’s ok. I will help you.
I want to tell you these things, but it will take time. You are so young. Your progress in speech and understanding is slow and difficult. And often it’s just hard for me to find the words (you know what that’s like). Over the years I’ve watched you grow, feeling elation at your achievements, and sadness for times gone by that I’ll never have with you again. Although I spend every possible moment with you the time is still going too fast.
Time. One day I will be out of time, and you must go on. What will you experience? What will you see? I do not want you to be alone and frightened, unable to comprehend the world around you, and without a guide, without friends, without me.
So I write these lines to you, a brief look into my thoughts at this time of your life, as I would have done for you anyway if you were not autistic, as I think every parent should for their child. Our ideas may change, our circumstances too, but I want you to remember how it was today, to remember always how much I love you, and to remember how proud I am of you. When I tell people you are autistic, it’s never with shame. I am saying: This is my son, look how amazing he is!
© Simon Rix
“The quicker you are in attaching verbal or mental labels to things, people, or situations, the more shallow and lifeless your reality becomes, and the more deadened you become to reality”
– Eckhart Tolle
Out of Chaos your life begins.
The best day of your life is the one on which you decide your life is your own. No apologies or excuses. No one to lean on, rely on, or blame. The gift is yours- it is an amazing journey- and you alone are responsible for the quality of it. This is the day your life really begins.
– Bob Moawad
On the edge is where we feel life most powerfully – between fog and clarity, land and water, ocean and earth. The edges are where we meet and find common ground.
Sometimes I find myself in the position of not having to do anything much – my subject is ready, the light is perfect, the MUA has done her job excellently, the setting is just right. Sometimes all you have to do is press the shutter.