Two Years Ago – On Our Diagnosis Anniversary.

Two Years Ago – On Our Diagnosis Anniversary.

Two Years ago, you were not quite three.

You said ‘pease’ instead of please. You loved buses and knew the words to ‘The Snail and the Whale’ off by heart. When your baby sister cried, you screamed and screamed and I felt cold spikes of fear and guilt to think that I, that she, could cause you pain.

Two years ago, you were due to move to the preschool room at nursery but you could not go. They said that you were not ready, that you did not speak while you were there, that you had not reached milestones as they expected. They told me you did not like other children, that you never talked or played with them. Sometimes, they said, you stood in a corner and slammed your head against the wall, again and again.

Two years ago, I sobbed to think that this could happen, that I could have been so blind. I crumbled into a million pieces when I thought about how you never looked when people called your name, when I realised that your speech was so different to your peers. Two years ago, on the 2nd of September 2015, I learned that you are autistic

Biggest on diagnosis day at Kennilworth castle

At first my chest burned and my stomach flipped and hot, painful tears were never far away. At first, I had a constant sick feeling of waking from a nightmare and feeling like everything was wrong, that it could never be put right. I was lost. Drowning. No help could come and all I could do was struggle to stay afloat.

But two years can be a long time.

Next week, you will go to school. A few weeks after that, you will turn five. When things go wrong, you still rage and gnash your teeth. When you are delighted, you still flap and grimace. When you are anxious, you still tug on your ears and bite your fingers. You still love repetition and know books by heart. I think you will always hate inaccuracy, shun make-believe.

But you – we – have come so far, my gorgeous boy. You can take off your own shoes and drink from a cup and, once, you brought a book to a boy who was crying – to stop him being sad, you said. You speak to strangers and you try to play and you have learned that you are different. You love your sister and she loves you. When you make her laugh, and laugh in turn – those moments are the brightest spots in my existence.

Slowly, oh so slowly, you are learning that you are different and that you must develop ways to cope. You are learning how to interact with others.

And me?

Two years ago, I thought autism was a tragedy. Two years ago, I thought that disability meant that you were broken, that anyone living with one must long to change it. I thought that I would always grieve for the little boy, the man, in my mind’s eye. I thought that society had a responsibility to help those who cannot walk or see or hear or think differently because they were less fortunate and the able should be magnanimous.

But my eyes have opened.

I see that every part of you, is fascinating and unique. You challenge me to think and learn, as a parent and a person. I know that the way I thought was all wrong, that society makes disadvantage, that the responsibility to even things out exists because it is flawed, not because people with disabilities are. I know that diversity makes the world a better place. And even though the spectre of my worst fears still haunts my thoughts about your future – is that not true for all parents? For all who love and fear loss and pain?

I look at you and I cannot remember the boy I once imagined. I see only you. Silly words make you collapse into giggles. You are gentle and cautious and brave. Every night, I tell you that I love you and your sister more than the world and everything in it. And that is true –

I am so proud, so grateful that you are exactly you.

And I will miss you, gorgeous boy, while you are at school.

 


 

2 Comments

  1. Caroline J Robinson
    5th September 2017 / 2:48 pm

    My son whose 7 is autistic we tried a year in school and he was far too anxious so for us it’s back to homeschooling and the anxiousness has gone, every child with autism is special I don’t class it as a disability I simply say they are unique in their own little way

  2. 6th September 2017 / 8:01 pm

    Beautiful post as always. Hope school goes well and he has a good bunch of kids with him- because that in itself can make such a difference

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