We have had a few difficult days. If I’m honest, they’ve turned into difficult weeks. My Instagram feed doesn’t show it, because my phone isn’t the first thing I reach for, in those moments of despair.
I reach for you.
Even if you’re kicking and screaming, even if you beg me not to, even if it’s just to take you somewhere safe. Away.
Difficult weeks don’t mean life is bad. Though we face challenges, they don’t mean you’re a burden. My life was made better when you came into it and now I know no world without you. And there is so much joy.
Your delight is breathless – you chase your sister and she squeals with laughter. “Mummy, I’m chasing H- !” and you both collapse in giggles. Your delight is my delight. You have begun to talk to her much more, when daddy and I are not watching. I hear you explain where you are, what you can see. She babbles back at you and all is right with the world.
Our days are filled with a million tiny moments – moments of joy, terror and wonder. Because you are three, these moments come thick and fast, spilling into one another so that joy becomes anxiety in a heartbeat. Because you are autistic, the fear can be totally unexpected and all-consuming– for you, for me.
Your wonder at the world around you grows, and my wonder at what you can learn and achieve does too. The Space Encyclopaedia is your absolute favourite. We’ve had it only a few weeks and you already know parts of it by heart.
But where there is obsession, wonder and anxiety go hand in hand. If I say a word out of place, say that the picture is just of Jupiter, instead of ‘big picture of Jupiter’ or ‘a picture of the inside of Jupiter’, your wonder quickly crumbles. Everything must be just so.
When the terror comes, I am lost. You are lost to me. I am wandering in a dark grey fog, desperate to find you. Even in my arms, you are a million miles away.
As you become more aware, these times are beginning to become more frequent, more difficult to manage. Your expectations are fixed. Your sense of rules, of danger, engrained. A cartoon character flying on a cloud, your sister going down the slide –you cannot bear them. Movement and heights and flying fill you with dread. Your face contorts in confusion and anguish. But because you need time, and calm, to collect your thoughts and explain, sometimes I have no idea what has made you inconsolable. You try – but often I cannot know what is wrong, how to help you.
Even after, the anxiety has been too much. You will not look at me. Your expressions become nonsense – just repeated sounds or words and sounds you like. You will not not answer. You bite and suck your fingers and shout out, as if you are in pain.
And I wait until you come back to me.
The music helps. I sit next to on the sofa and we are both adrift, you and I. But as the notes spill out from your headphones, I feel your body relax, your breathing slow. You move so that you are resting against me. We breathe together. I squeeze you tightly, and there you are again.
Some days, you can ask the same question, over and over again, a hundred times in a row, and the answer must be the same, exact, perfect, every single time. Any deviation, any refusal, any attempt to relax your desperate hold on the precise, the predictable – they are met with bleak terror.
I’ll answer you exactly, my sweetest boy. I’ll answer a thousand times, unerringly the same, that the brachiosaurus says ‘Roar!” – if you need me to. But is it the right thing to do? The world is unpredictable and you need it to follow rules. While you are with me, I can make it so. But what happens when I am not?
School looms in front of us, eighteen months away. The choice of where you will go looms closer. Our choices now sculpt your life.
I phone the Paediatrician. Your genetic tests are still not back. I phone your nursery. You still cannot move to the preschool room, six months late – it’s too risky without one-to-one funding. There is no funding. I phone the Children’s Clinic. Your speech and occupational therapy referrals have gone through but there is such a long waiting list. Seven months and counting with no word. I phone and I phone and I phone…
I am not used to this. My whole life, I have never felt so helpless. I could always DO something. Read, learn, pester, fix. I have never felt that the system was so broken that I couldn’t get what I needed, never felt resentment that I have worked hard, contributed, and I deserve something back. But I feel that way now.
I need to know how to manage your desperate anxiety. I need to know how to help you cope in an erratic world. I need to know how to help you communicate. I need to know that I am doing the right things for you.
We need help.
And the help feels like it will never come.
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