Elliott, my eldest son, will be 18 in the summer. His lumbering frame – all 6’4” of it – clatters around the house in deep-throated guffaws as I write this and it’s hard not to wonder: “Where did my little boy go?”
It seems like a heartbeat ago that I was in a London hospital, gazing on him as a newborn and promising him a world filled with joy, adventure and love.
But “Where did my little boy go?” is a loaded shotgun of a question. Where did he go?
That boy was never really there.
Sure, those early days came with all the sleepless nights and smelly nappies you expect when you first become a parent. But, for Elliott, they never went away.
Elliott never learnt to talk. Never learnt to dress himself. Never learnt to read. One by one, Elliott missed milestones that his friends surged past. I say friends. He never really made those either.
Each milestone missed was a step away from the life I thought lay ahead for him and for us.
Elliott was diagnosed with autism aged three. At the time, I had no real idea what that meant.
So I did what every parent does when they receive a life-changing diagnosis about their child; I read the books, joined the support groups and trawled the internet searching for something to help me understand what had happened.
The NHS specialists’ conclusions were opaque, doing little to help us understand or to plot a course forwards. We paid to see private sector specialists. Same conclusions, different price tag.
All this time, Elliott was collecting an armful of diagnoses to go along with his autism – developmental delay, sensory processing disorder, epilepsy. None of these labels really told the story of who Elliott was. Each was but a solitary jigsaw piece that gave no clue to the overall picture.
We found ourselves at the extremities of the autism spectrum. In a world that was growing to understand these disorders as ultraviolet, Elliott was living a life that was infrared.
In the end, we stopped saying he was autistic and instead said we had a son with learning disabilities – a term that didn’t come with any expectation beyond an understanding that things were hard for Elliott in a way that most people could never comprehend.
What can I tell you about Elliott?
I can tell you of his love of CBeebies.
I can tell you how hard fought each little step on his learning journey is.
I can tell you of the hours he has spent happily in the back of our car, watching the world go by.
I can tell you how things overwhelm him and flip the ordinary into chaos without warning.
I can tell you how angry I am that this is the hand he was dealt.
I can tell you how proud of him I am.
Because, whenever I have shared the story of our family – be it in tweets on TV or in podcasts – it has been with two truths in mind.
Being Elliott’s dad has been the best thing that ever happened to me.
Being Elliott’s dad has been the worst thing that ever happened to me.
That these two truths are hard to reconcile doesn’t make them any less true.
In talking honestly about what it’s like to be a parent to a child with profound learning disabilities, the good and the bad shared with equal candour, I hope to make the world a little less infrared for people like Elliott.
And, ultimately, I still hope to keep those promises I made to Elliott when he was a newborn and I guess my hopes for him now are not so different from my hopes back then.
To be happy and to be loved. To hope for those is enough.
As my profoundly disabled son approaches adulthood, I realise that being able to talk candidly about family experiences will make society a little more understanding.
It would be easy to write about how hard Elliott’s disabilities have made his life and our family life. But to do so would be to neglect the delight and happiness Elliott finds in his world.
Elliott is never happier than when he is in water.
To Elliott, a swimming pool or, especially, the sea is a world of relief that almost literally washes away his struggles.
He adores plunging in, jumping up and down and letting the water rush over his head and surge through his fingers.
Our Sunday morning swims have been moments of bliss for more than a decade and are the one time Elliott can totally relax and play freely with his siblings.