Dear autism,

We need to talk.

You knew me before I knew you. I know that you make your presence known suddenly for some families but you crept up on us gradually as I was adjusting to other news about Harrys health and I am grateful for that. There was no sense that you had robbed me of my child. You were with him the entire time. At his side like some twisted guardian. As I got to know my boy, I began to see and understand you slowly.

I wasn’t angry at you in the same way as I was his Goldenhar but I did feel that the double blow was unfair. A child with a disfigured face has enough battles ahead of them. I would have preferred you to have chosen another child in the early days. Another family. But you didn’t. You chose him. You chose us.

I think I was your vessel to him. I see you in other members of my family. More so in some than others but enough to believe that you have been with me a long time too. Dormant and waiting for my baby (or babies as it turned out.) Would you have been so brazen if my babies had been girls? Would a fiery, independent little lady have kept you at bay better than my laid back boy?* Would it have made any difference? It doesn’t make any difference to me. Not now. I love my boys completely and unconditionally but sometimes there are parts of their behaviours that I don’t like. For Oliver it’s his defeatist resolution that its not worth trying when he ‘knows’ he is going to fail anyway. I can’t tell you how much that drives me mad. For Harry, it’s you. Not all the time, but when Harry makes me sad, you are more often than not the reason.

My boy looks different to his peers and I have grown used to the stares and the whispers now. Children stay away, at a safe distance so they can talk behind their hands without getting too close to the object of fascination before them. But today a young boy approached Harry and said hello for the first time in Harrys 12 years. I was elated! But then you stepped in and Harry didn’t reply. He didn’t acknowledge the boy and that wonderful moment disintegrated before my eyes like the ashes of a burning letter in the wind. Words unspoken but still important. All I wanted was a brief moment where Harry could interact with the first stranger ever to look past his face and try to meet the boy. But you wanted him to yourself and so it wasn’t allowed.  I hated you then. Fiercely.

We came home and the dog had had an accident in the kitchen. Andrew held Harry while I mopped but you told Harry that he was holding you back from the remote control I had promised him. Harry screamed wildly and kicked out on the floor, smacking himself and spitting with rage. You did that. I calmed him and tried to explain myself over your chaos. He calmed slowly and my boy came back to me. I won that time but the battles between you and I are exhausting.

You are the black jack dealer of our game of life. Sometimes I am thrilled to find I have twenty-one and I celebrate the victories – a new word, a demonstration of understanding or cooperation, progress. Sometimes I play the game slow and steady, holding my breath as I approach the limit and constantly debating in my head whether I should stick or twist. Settle for the moment or push to see if we can move a little bit more. Sometimes I am bust in one hand and never stood a chance. Whether I am winning or losing, you hold the cards the entire time. I so want to switch places with you. Harry would have a lifetime of twenty-ones and I would be a broke but happy dealer. But that, like so much with you, is never going to happen.

Its not just the communication with his peers but his own brother, his twin. Oliver struggled for years to bond with a brother who was so engrossed with you that he was unable to interact anywhere else. But he persevered and love prevailed. Their bond is strong and unbreakable. Yes, you test it but it beats you more often than you win.

A lack of communication day to day can be hard enough but when Harry is in pain it is unbearable. To know that he is hurting somewhere and powerless to tell me where or how I can help him physically hurts my heart. Why would you do that to him? Why would you add to his suffering by trapping his words? I don’t understand.

He doesn’t understand what is safe and what is dangerous. He can’t distinguish friend from foe. He is as vulnerable as a young person can possibly be. Because of you.

He is governed by the rules of your world. Your time zone which makes sleep a challenge, your language (or lack of), your reliance on routines and familiarity, your preferences for clothing, food and places. I am never allowed to know the rules. I live on the other side of the glass where I am helpless and left to guess and hope for the best. Waiting for the moment that Harry will tell me that he loves me spontaneously, for a chance to know him without you there. Just for a moment.

Some days, the battles with you leave me sad and exhausted but there are times when your brilliance defies even my own resentment.

Harry plays the piano because of you. He could navigate the keys effortlessly before he was even three years old. His gift is incredible and applauded by many. You did that.

When people stare at him, whisper or laugh, point and grimace, you don’t let him see any of it. You dutifully protect him from the ignorance and cruelty. I hate that I love you for doing something that I cannot.

And one day when I die and have to leave him, you will spare him the pain of grief and loss. You may also erase the memory of me from my boy like a hacker wipes the mother board of a computer. For this, you are a blessing and a curse. For that, you will break my heart to save my boy but I forgive you.

There are so many times that I despise you and all that you prevent my boy from becoming, the life he may not live, the freedom he may never enjoy. All because of you.**

But then I see my laughing, bouncing boy and I watch the way he radiates love and pure joy like a beacon of wonder. I witness the magical way he makes people fall in love with him and the way he develops in bursts of brilliance that excite me beyond words.  I adore the wonderful boy that he is because of you, not in spite of you. I see the moments that he breaks away from you and comes to me. Twenty-one.

Like the day he wrote ‘Mum’ on some paper as I chatted with Oliver’s teacher at parents evening. Did he breakthrough for a moment to let me know there’s so much more below the surface or did you allow him that moment to give me hope, or to torment me? In those moments I really don’t care. I am just overjoyed to experience them.

I don’t take a moment of his life for granted, I appreciate every little thing and celebrate so much more than I would ever do if you weren’t with him. Yes, my life is harder in many ways but it’s also richer too.

So here I am, wishing for moments when my son can be free of you *** and yet aware that he isn’t really my boy without you.

I am resigned to the fact that we will always share him I just want to ask you once to show some compassion. To ease back and free some words for him, to let me in so that I can support and calm him when he is afraid or in pain, to let him tell me that he loves me. My heart is aching to hear those words.

Yes, some days you have me on my knees. Some days I cry and you defeat me but you’ll never see me give up. You are his autism but I am his mum. I love him with an intensity that you will never rival and at the end of the day, love is stronger than anything. Stronger than fear, stronger than adversity, stronger than loss, stronger than autism.

My boy may be ‘ours’ but his love is all mine. Even when I lose, I’m winning.

An ace and a queen.

Twenty-one.

Chat Soon

Charlie xxx

Just to clarify…

*Many girls are also on the autism spectrum, its not just a ‘boy thing’

** I’ve not written my son off, it is a fact that he will never enjoy the freedom of choice that his brother does

*** Yes, there are moments when I wish Harry was autism free. If anyone has a problem with that, I suggest you read another blog.

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