Elsewhere 

I can see him. I can see him and touch him and smell him and hold him for the split second he can sit still for. I can hear the stimmy noises that he can’t help making and the buttons he’s pressing on his new camera and the same songs being played over and over and over and the requests for snacks. He’s here. But he’s not here. He’s Elsewhere.

Elsewhere is that point at the end of your fingertips that you can’t quite reach. You stretch and stretch and use all the tools you can but it’s just too far. Too distant. Too elsewhere. And I miss him. 

It’s not always this way. Sometimes he wants to dance with you and sing with you and play. He wants to show you things and make things together. He wants to tell you about things even if he has to use pictures or lego to do so. Sometimes he is here. Over the recent holidays he was here. We made and baked and laughed and danced and decorated and had the best Christmas we’ve ever had. 

But since it ended he’s been gone. Gone to the other place. No real conversation or singing. No answering of questions unless that question is “do you want a snack?”. It is of course, self preservation. Perhaps closing himself off is the only thing he can do to feel safe when the world is too big and too loud and too scary. When people don’t behave the way you expect. And when people are sad. 

He needs people not to be sad. Kit is happy?” He asks “Yes Ned” we tell him “Kit is happy”. “Mummy is happy?” He asks. “Yes darling, Mummy is happy too”. He has been asking these questions for a few months but it has intensified over the last few weeks. A new trait.
Suddenly he can’t bear the sound of cries, even by a baby he’s never met across the room. He’ll see the tears of another child and his own eyes fill with tears. There is a theory and it is part of his autism and it has a name and a Wikipedia entry and it is too complicated for me to describe now but it basically means that he cannot separate the pain in others, or the perceived pain, from his own.

Imagine that. 

He cannot distinguish that it is somebody else’s anguish. He feels it all. He carries the weight of everybody else’s emotions. Every tear, every shout, every bump or argument or telling off that is happening to someone else is happening to him too and it doesn’t matter how many times I try to explain that the baby is just hungry or that Kit is just being shouty or that school is safe and fun even though it’s filled with lots of other children who find it difficult to deal with their emotions too. It doesn’t matter what I say. When it happens, he is in pain.

It is no wonder that he shuts us out sometimes. How tired he must be.

So although it hurts, although I want to scream to him to come back to me, I have to watch him build his walls whilst trying to give him the strength he needs to break them back down when he can. There will be meetings. With his nurses and teachers and we will talk strategies and coping mechanisms and what we can all do to help him. My beautiful boy. 

We will help him, and give him what he needs and this period we are in will get better because it always does and he’ll come back to us. He won’t be at the end of my fingertips anymore, he’ll be in my arms again. 

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5 thoughts on “Elsewhere 

  1. Oh Clare – my heart goes out to you – and him – to an ordinary person it is unbearable – but your strength and courage mean you can and will bear it – I know you have no option – and that everything you do is for him and will ultimately be of such enormous and wonderful benefit to you all, but oh how I wish that we ordinary bystanders could do more to help, other than sending all the love and support we can. it seems especially cruel after your lovely Christmas holidays, but as you say nothing good comes without a price to pay.. and you will win – I know you will win.. Packers are fighters and winners – and we love you xx

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  2. Oh Clare you are such a beautiful writer and an inspiration to me x you capture in words what my heart wants to say x thank you x

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  3. I’m not autistic but I can relate on so many levels to the traits in your beautiful son that you describe so eloquently. I’m 36 and I am only just beginning to work myself out. Intense, raw empathy and introversion is how I roll, often debilitating overstimulation. I sometimes wonder if we’re all on the spectrum somewhere.
    Thank you for your words. The world needs more Neds x x x

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