The Parts of Autism Only We See

I’m writing this at 10 minutes to midnight. I’m lying in my bed with one arm trapped under my 16 kg, 3 year old son, his eyes have finally closed again but his breathing is still jumpy and uneven after his wake up.

It is a regular occurrence for my son to wake up screaming and inconsolable.

He wakes up so heartbreakingly confused and will often repeat the same phases which make no sense to me but it’s something that must be going over and over in his mind as he tries to make sense of this confusing world around him.

He will scream until he struggles to breathe, and he claws at me desperate for some comfort but then can’t bear to be held or soothed for what feels like hours.

Through tears his eyes plead desperately with me to calm him down and I try soothing music, a low light and talking to him but nothing seems to settle him.

He eventually exhausts himself and finally accepts my arms as I hold him and rub his back to soothe him back to sleep.

These are the parts of autism no one sees

I can’t switch my mind off from that and go back to sleep and so here I am thinking about all of the parts of autism other people don’t see, parts only we see at home, behind closed doors.

There’s the day to day struggles and challenges we wake up to every day before we face the rest of the world.

From having to lift my 16kg son on to a changing table and see him kicking and crying while I try to change his nappy, to fighting to close the fridge after seeing him take off all the lids and line up the milk bottles for the fifth time that morning.

There’s stopping him from banging the living room door open and closed repetitively in the early hours of the morning, to trying to brush his teeth without him clamping down on the brush and screaming.

There’s showing him for the tenth time that Mummy’s car is still safely parked in the driveway, to trying to get him to put on his shoes.

These are things other people don’t see

Getting ready to leave the house is always a carefully structured routine which must be followed exactly or my son can get highly anxious which can lead to a difficult day all round. If his special winter hat gets mislaid or all his favourite hoodies are in the wash then he can’t seem to be able to regulate himself.

It’s constant egg shells and you can’t take your eye off the ball for a second. These are things other people don’t see.

But then there’s the endless love and cuddles, the way my son looks at me with his big hazel eyes like I’m the only person in his whole universe.

There’s the constant energy and curiosity as he bounds around the house.There’s the biggest and most genuine smiles that warm my heart and fill me with so much joy and love for my wonderful son.

There’s the special moments where he shows pure love and empathy and he just knows that I need a cuddle or that I need to laugh.

And in those moments I know that I wouldn’t change this experience for the world. I get to see things other people don’t see.

All of these things make up my beautiful son and I feel proud of him every single day.

The world of autism is still so new to us

We are still awaiting a formal diagnosis for my son but I learn something new about this condition every day.

I am so grateful for my beautiful son who opens my eyes to a world with more strength and love than I ever knew possible.

I feel very honoured to get to see these things other people don’t see, the ups and the downs, because they are all parts of my amazing son.

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers that choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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