Welcome to Planet Zorg

My heart is heavy as I write this; acutely aware of the two recent high profile cases in the American media regarding autism. The untimely death of two beautiful souls who did what thousands of kids have done before them, and thousands will do again; wandered off from under the watchful eye of their parent or carer. Mostly, though, this ends happily and through hugs, tears and frustrated relief family and child are joyously reunited. The recent cases in the media serve as a stark reminder that not all cases end quite as happily ever after.

Most people think that autism is a thing; a diagnosis or description to label a condition. This is partly true, and yet for those of us living with it day in day out the fallout is so much more than a simple one-word conclusion. Caring for a child with a complex disability like autism is all consuming; there isn’t one part of my life that remains untouched by B and his needs. Do I choose this? Of course not. Please don’t presume I am an overbearing mother who can’t bear to unwrap the cotton wool from her precious boy. I don’t choose the guilt that comes from being unable to meet each family member’s needs. I don’t choose the endless battle for the right support and services. I don’t choose the absolute exhaustion that starts every day when I wake up. I don’t choose the ignorant and hurtful comments that are thrown my way on a regular basis. I don’t choose the total isolation this thing brings with it. I don’t choose the stabs of jealousy that come thick and fast when I watch other people’s regular families. I don’t choose the uncertainty of the future and I definitely don’t choose the grief I carry with me daily. Autism demands everything and B’s disability necessitates I give all of me, all of the time. It takes one second for tragedy to strike; one moment of taking my eye off the ball for it all to come crashing down.  

There is a well known poem written with the aim of giving regular parents some sort of insight into the world of parenting a special child. It’s called ‘Welcome to Holland’ and while I identify with a lot of it, I also find it to be slightly too trite and neat to represent the mad chaos that comes with this crazy journey. So I decided to write my own version.

Welcome to Planet Zorg

Having spent the previous few months preparing for our mission, the moment has finally arrived. We’re on our way! Cramming all our summer clothes into the allocated two tiny cases we grin excitedly at each other. Family gather to wave us off into the sunset as we board our space shuttle; The Jupiter Express. We’ve been assured by mission control that although our family won’t physically be with us, the newly developed super speed connection will ensure we have contact whenever we need it. Slight apprehension sets in as we buckle up our belts, but grasping each other tightly we remind ourselves that we’re ready for this. Months of training from the Jupiter Committee mean we know exactly what to expect on landing- the climate is hot and dry, the landscape a patchwork of rolling hillside and the weather fairly predictable. Eating solely Jupiter cuisine for the duration of the training means our systems are well adapted to this new food, even if it is an acquired taste. There are occasional freak storms but the natives are friendly and besides, we’ve been prepped to the hilt in knowing the language and customs of the planet. Occasional gaps in our knowledge will be inevitable, so we’ve been warned, but there’s a fully comprehensive support system in place for that, with Ground Control a simple call away. 5….4…..3…..2……1….BLAST OFF!  Bustling crowds fade into the distance and the next leg of our journey begins; now we’re on our own.

After several hours the Jupiter Express crash lands onto the planet, turbulently and awkwardly like a hippo on ice. In all the run-throughs back on earth that landing had been perfect and yet the real thing leaves us shaken and dazed. Nursing our bruises, we limp to the door with undeterred passion, enthused about finally DOING, rather than simply WAITING. After much effort the door eventually swings open and unease gives way to cold hard fear as we survey this strange new planet. The icy blast of air tells us something is very wrong, and peering out spiky snow covered mountain ranges replace the expected rolling hillside. Rising up steeply into a cold unforgiving horizon the confusion threatens to overwhelm us until from somewhere we remember our training. Grabbing the phone we frantically dial Ground Control. Nothing. Dialling again… still nothing. It soon becomes clear in the chaos that we’ve lost the connection; somewhere along the journey we’ve ended up crashing onto a planet outside the realms of our knowledge or experience, a place we are entirely ill equipped and unprepared for. Cold fingers grip our hearts as we struggle to keep warm with the few clothes we’ve brought with us. Stepping out into the unknown we are now entirely dependent on gut instinct alone; everything that’s gone before crumbles against the bleak backdrop and hope fades as we realise our utter aloneness. Where are we? This planet was never even on our radar. 

This planet was never even on our radar.