Monday, 19 June 2017

Dear Parents of Z

Hi, Christian parents of Z, and A.  You have written a Christian book, recently published.  In it, you talk about your children, Z and A, a lot.  Here's an extract:

I've taken the liberty of disguising the name of Z.  It's important that we don't know his real name, nor your real names, in this Blog.  To protect what's left of the privacy of Z and A.

I want to write to you, as an autistic adult who started life non-verbal.  Rocking, flapping, lining things up.  Collecting things.  I'm still that autistic person.  I simply grew up.  I have an autistic son.

I had a brain that memorised sounds.  Even if it didn't know what they meant. And later on, when I learned to speak, I knew what people had been saying about me.

I want to write as if I am your son.  I am not, of course.   He is his own person.  He has his own things to say.  But it's how I would write, if I knew my parents had written this about me.

"Dear Mum, Dad.  It hurts me to read what you wrote about me, in front of thousands of readers.  It hurts so bad. 

The things you call obsessions?  They are how I learn. They are not obsessions.  They are my passionate interests.

They are how I find a sense of peace and calm in the noise.  The incredible noise around me is stuff caused by you both.  Your house is so loud.  And it stinks.  It stinks of fresheners and cleaners.  You stink of fresheners and cleaners.   And it's so bright.  The colours, the patterns, everything around me is so intense.  So scary.  Everywhere I go, I can barely see, barely hear in the chaos.  Those intense flickering fluorescent energy-saver lights, turning everything into a weird disco to my eyesight.  Why is your world like this, and not like the peaceful gardens?

So, when I see you, my beloved parent arriving downstairs, I know you want to help me survive the day in this hell that modern society has created.  I know you understand that I need to watch something familiar.  I'm learning language, my way.  Repeating it, over and over.  I don't use your language.  My culture is different.  My body language, my voice use.  I use a whole different system.  But I want to learn yours.  I want to learn the same way as you learn a foreign language, by repeating it over and over.    I'm training my brain.

The pattern I create, with the colour and lines, the boxes, the inserts - those are my art.  In the same way that if someone came up to a piece of art you did, and crayoned over all the lines, you'd shout.  I shout.  I shout because it's such vandalism to destroy someone's art.   Someone's science. Such destruction.  You say it doesn't matter, but it does.  It matters, Dad.  It matters....

You are telling people that my bouncing in excitement at learning new words, at seeing familiar things, is wearing for you?  I don't understand.

You are saying to your readers that my flapping is exhausting for you?  Flapping is how I see distances, Mum & Dad.  Flapping is how I feel where my body is.  Flapping is how I sense the world around me.  It is different from you, yes, but that's OK.  I don't mind that you stay still and refuse to bounce.

You compare life with us to hell, in the book.  I don't know how to explain how awful it is to ponder that this is what you think of us.  That this is what you want to write to Christians about us.

I was hoping you'd be the kind of Mum & Dad that would respect my privacy.   The kind that would protect me from the world.   Save me from the embarrassment of a generation of people reading a book, saying, "Look how awful Z is!"  "What heroes his parents are for having him".  "Thank goodness for Jesus getting the parents through this devastating experience of having Z in their lives."   

I don't know what to say, Mum, Dad.

I love you.  I love you so much that I trust you with my precious DVD collection.

But, don't you know how much it hurts me, to be paraded in front of the public with my name?  For writing how much of a hero people are, to have a child like me?

Please Dad, please Mum.  Please be the parents I need you to be.

I love you."