Ian Goldsworthy: how the road divides on the journey to adulthood

My son reaches 18 this summer. While other young people move on, his options are more limited, and his coming of age will upend the support that he and the rest of our family rely on

Cycle lane

Two things will happen this summer; Elliott will turn 18 and I will find myself reapplying for my job. Not the 9 to 5 of course (I teach), but the main job – being Elliott’s dad.

When Elliott was three years old, a soft-spoken paediatrician diagnosed him with autism and developmental delay. Since that moment, I have been one thing above all others: the father of a disabled child.

But, since 17 June, I’ve been the father of a disabled man. Having a disabled adult son feels different from having a disabled child.

Maybe it’s because, while he was under 18, the language of Elliott’s life wasn’t so different from that of his peers.

Every child moves through the world of education. Elliott’s time in school may have been in a different location and at a different pace, but he was still learning. If the rail track of his life wasn’t quite parallel, he was at least running on the same gauge as everyone else.

But 18 marks a jumping-off point for his contemporaries. The world opens up for them now in a way that it just isn’t going to for Elliott.

Their lines carry high-speed bullet trains, off in search of love, adventure and success. Elliott’s locomotive is set forever now, endlessly looping on the disabled man branch line with the limits of his future options all too visible.

Elliott’s care needs won’t change just because he’s 18. He’ll still be non-verbal. He’ll still have profound learning disabilities. He still won’t be able to manage dressing, eating or going to the toilet independently.

Yet the tapestry of care that we’ve woven around Elliott – the patchwork of support that has just about kept us standing – all comes to an end in the next few months.

Respite care? Holiday and weekend play schemes? He’s ageing out of all these. The paediatricians who help manage his epilepsy? Transferring him to adult services.

Elliott’s fortunate enough to be at a school that provides an extra year of sixth form but he’s about to start his final year of that.

What comes next is not entirely clear. It seems likely that he’ll be able to attend a local college for a couple of years. But this is a very different proposition from school, not least that it is for only four days a week.

And that seems to sum up the provision that exists for young adults like Elliott. You’ve made it this far – now try to keep going with less of what got you here.

All of Elliott’s classmates and their families are in the same boat and facing the same cliff edge of support.

That seems to sum up the provision. You’ve made it this far – now try to keep going with less

If we want families to continue to support their profoundly disabled children as they reach adulthood – there are all sorts of reasons why this might be preferred – it seems absurd that we are asking them to do so just as support is being withdrawn.

Fundamentally, age ain’t nothing but a number for Elliott. He remains much the same as he was aged three – just supersized. To change anything about his care package because he’s hit 18 feels as random as changing it because he is 37 and four months. It’s an arbitrary line in the sand that is going to upend everything that our boy – and the rest of our family – have come to rely on.

Watching Elliott reach 18 feels like watching a humpback whale breach the waves; it’s an enormous rupture in our lives and one that is sending ripples out in every direction.

Where we all land isn’t entirely in our control but we can be sure it is going to make an almighty splash. 

Christmas song in summer

One day, Elliott will go into residential care. His care needs are too great for us to manage indefinitely. The thing I find hardest to imagine about that scenario is the absence of the sound of Elliott in our home.

Elliott loves to jump. It will seem thoroughly odd to not have to pause a conversation because it sounds like he might come through the ceiling. Despite not having any real concept of Christmas, he loves that Mariah Carey Christmas song. It will seem strange to not be listening to that on a hot July day.

He loves to laugh. Sometimes we can tell you why he’s laughing. Sometimes he’s just laughing because… well, who doesn’t like to laugh? When the time does come for him to move on, his unique soundtrack might be the thing that leaves the biggest hole.