To mark Down’s syndrome awareness week, we’re publishing this story by Emma Sterland, who works on Scope’s online community. It was first published in the Guardian, and we’re sharing it here as part of our 100 Days, 100 Stories campaign.
You knew something wasn’t right before anyone else did.
You kept calling the nurses over, but he was always asleep when they came. You wanted them to see his eyes, but he always had them closed. They smiled and put it down to new-mum nerves, but you knew.
“Your son is a congenital idiot,” were the doctor’s carefully chosen words. They are as sharply etched now as they were 54 years ago. “Best to wipe the slate clean and start again.” You were young and newly married. This was 1956 and mental institutions were still the norm. No one expected you to take him home. But you did.
You had to feed him round the clock, he was so slow to eat. It took him a long time to reach the milestones other parents took for granted – rolling over, sitting, holding a spoon – but you knew he’d get there. And you delighted in his achievements, no matter how small they might have seemed to others.
He was “ineducable” but you taught him to read and write. You showed him how to keep a diary and encouraged him to write thank-you letters. He was a little clumsy, but he loved to help. You’d give him a big bowl of peas to shell or have him rolling socks into pairs.
Having a child with Down’s syndrome was nothing to be proud of then. But he was your firstborn and you were proud of him. When a friend asked him to be the page boy at her wedding, you wrote an article in this newspaper about it.
He was seven when I was born. By then, you’d learned to ignore unkind remarks, so when a neighbour peered into my pram and said, “See you’ve got it out of your system then,” you just smiled.
You say he adored his baby sister and was always eager to hold me. He was the perfect play companion – patiently returning toys I’d chuck out of my cot. I have happy memories of camps he and I built together under the dining room table.
When my younger brother was born, your family was complete. You had three of us to look after, each with our own separate needs. You made it look effortless, but I realise, now, how much work you put in.
I didn’t really mind people being curious about my brother. I never felt ashamed of him. Even as a sensitive teenager, I wouldn’t flinch when he wore his Batman costume to the beach or stood up in the cinema to wave at his favourite characters. I took my cue from you. It made him happy – where was the harm?
But sometimes I just wanted to be like everyone else. You gave me the space to do that. Somehow you made us all feel special and important. I know, from hearing other people’s experiences, how hard that can be in families with disabled children.
You taught me some of the most valuable lessons I’ll ever learn. You showed me that everyone has their own contribution to make, whatever their ability. You taught me about tolerance and compassion. And, above all, you showed me how to get on with life, even when it throws you the unexpected.
At 78, you’re still caring for my brother. You take him to his clubs and his horse-riding, and you massage his arthritic feet. You’re still proud of him after all these years. You show me things he’s made at his day centre and tell me funny things he’s said. You should be taking it easy now, but you’re still a full-time mum.
I know there are many others like you, who’ve had a lifetime of looking after their sons and daughters – a lifetime of putting someone else’s needs before their own. I salute you all.