"It's not what I signed up for". Lessons from my autistic daughter #3

“I know this might not be what you signed up for”...

...the specialist stated empathetically but bluntly. The rush of adrenaline engulfs my head with pinpricks, slowly drains through my body then out through my feet. It felt like a near-miss on a motorway.

“Not what I signed up for”. I stated silently on a heavy out-breath. What did I sign up for? ?If it was gushing moments of love, swaying this ‘tiny being’ back and forth in a rocking chair and singling lullabies…this certainly wasn’t it.

5-years on, it’s that time again. Every change in season I feel the urge to ask Luca (Harper’s 8 year old brother) what autism is. ?The first time I asked him he explained “it’s when your brain is broken”. That motorway moment again. That mistake has never been made again. This time he tells me pointedly “it means Harper asks for food AAAALLLLLL the time” rolling his eyes clockwise, exploring all of his peripheral vision. She does. I ask him how it makes him feel. He shrugs. “I just want to play with her and she won’t let me” he says, his face turning blotchy - the first sign that tears will follow. ?“I know. It’s hard” I whisper. I give him a hug. I won’t fix this for him and I don’t try. But I revel in the fact one of my children doesn’t need a 10-minute pre-warning for a cwtch.

That same day I stood watching Harper dissect her mini cocktail sausage at a friend’s party with cartoon hearts in my eyes. It takes her 5 minutes. The eyes of the other parents more intent on establishing if I was going to ‘allow’ such ghastly manners. I bend down to her slowly. “I love you” I tell her. I don’t mention the sausage. She feels safe amongst others by absorbing herself in this precise procedure. She tips her head so it connects with mine. She doesn’t say it, but I know she means it too.

“I know this might not be what you signed up for” punctures my mind again. So what did I sign up for? It’s taken me 6 years to realise, but...

...I signed up for ‘doing whatever it takes to make the world a place where this human-being can thrive’.

For people to know her brain is not broken. For people to acknowledge the predictability and unpredictability. To recognise the juxtaposition of not wanting to be touched but needing to be connected at all times. To blaze a trail, but also to ensure she advocates for herself. ?I follow her lead. She follows mine.

“I know this might not be what you signed up for”. I signed up to learn, and to lead. Anticipating the struggles ahead and allowing them to happen, learning how to deal with them together. I learn from her. She learns from me. There’s no pecking order here.

This is what I signed up for.

Autism acceptance week: “We are here to transform lives and change attitudes to help create a society that works for autistic people.” A noble cause. A needed cause. She has accepted herself. And so have I. Self-acceptance on the other hand is more of a smattering. A learning journey I am still on. ?

What do we all sign up for, in our lives? And at work? ?Learn, lead, learn, evolve. Doing whatever it takes “for you, your family and your teams to thrive”.