💔 I often wonder who my Elliot, now 13, would be without his autism.
Maybe he'd be calling his friends on the phone he'd no doubt have argued with me to have.
He'd be spending his summer riding his bike with his twin and their friends, roaming the parks and heading off on adventures together.
I'd hear, "See you later, Mum."
Maybe mornings would be slow summer days, the reward after another school year now safely tucked away in our memories.
Perhaps he'd be off to an adventure camp, making friends and collecting stories he'd tell for years to come.
His mates would be planning days out with him and trips with his brothers. He'd be safe crossing roads, safe in crowds, growing in confidence and independence.
He'd make his own breakfast.
Maybe there'd even be a first summer romance. Hidden from me, of course. But I'd still tease him about it.
Friends would be knocking on the door. Shoes scattered across the hallway because ours would be the house everyone wanted to come to. I'd be annoyed and secretly love every minute of it, handing out endless snacks and constantly restocking the cupboards for the beautiful chaos of summer.
I'd hear him laugh every day.
I'd watch him enjoy playing video games.
I'd be on summer break from work. That was always the plan. I'd spend the holidays recovering from another busy year, planning family days out, maybe even a short break away. Dad would be working, and I'd make sure he had time to switch off too.
But instead...
Profound autism, complex needs and mental illness has stolen so much from my son. It took his ability to live an independent life.
Not his worth.
Not his beautiful personality.
But his independence, his peace, his ability to communicate, and so many of the everyday experiences most children take for granted.
Our days are filled with dysregulation, fear, sadness, meltdowns and an endless search for tiny moments of calm and laughter.
He cries.
I cry.
He has limited communication. He can't climb. He can't write his own name. I know his brain wants to, but nothing we've tried has unlocked those skills for him.
He needs help with the most basic personal care, and now he's starting to feel embarrassed by the most natural human functions. He doesn't want this.
He needs to be beside me or his dad almost all the time. He has to check his lawnmowers and digging spades hundreds of times a day. He digs in the garden because that's where he finds some comfort. Toys hold very little interest.
We try to go on days out, but after ten minutes he's overwhelmed.
"Home now."
He lives on edge.
When his nervous system becomes overloaded, he can become a danger to himself or to me.
So we reset.
And we try again.
His nervous system seems trapped in a constant state of distress. His thoughts become obsessive loops. He labels everything, repeats the same phrases, asks for something, changes his mind, then starts again.
Repeat.
Loop.
Again.
There is barely any time left for our other two boys, let alone for us as husband and wife.
I need rest.
His dad needs rest.
His brothers need rest.
Most of all...
Elliot needs real rest.
Autism, in our home, has not been a gift.
I need to say that out loud.
Please don't tell me not to grieve the life Elliot should have had.
He grieves too.
More than many people realise.
Deep inside, he knows he is struggling.
To pretend otherwise, or to shame either of us for speaking honestly, helps no one.
Pain is pain.
Sometimes disability means living with physical pain, emotional pain, mental anguish and social isolation all at once.
So we carry on.
Me and his dad. His constant companions.
Taking turns in the revolving door of co-regulation, supervision and care. (While trying to work, pay bills and stay sane)
Sometimes Elliot finds a moment of calm.
Sometimes he smiles and makes jokes. Hes funny, really funny. Would he have been a comedian?
Sometimes we cuddle.
Those moments are everything. 🥰
Sometimes we stop for food because he can't regulate his appetite. Thank goodness for drive-throughs. A coffee for me. Burgers and chips for Dad and Elliot.
Sometimes that's all we can manage.
And then we start again.
His body craving autonomy.
His mind searching for clarity.
Me and his dad doing everything we possibly can to help him find both.
When his cheeky smile appears...
When his caring heart shines through...
When that infectious laugh escapes...
For a few precious moments, we get our gorgeous boy.
Those moments keep us going.
Profound autism is hard.
The lack of respite and support often leads to isolation.
There is no time to build a village when every ounce of energy is spent surviving each day.
Profound autism is not a trend.
It is not a superpower.
It is a profound disability.
And families like ours deserve to be heard with compassion, not judgement or told its a superpower!