I remember it vividly. Dad gathered the three of us together in the dining room of our family home shortly after the excitement of our new baby sister arriving. His arms enveloping all three of us, he was clearly emotional. ‘What’s wrong Daddy?’
‘The baby has something called Down’s Syndrome’.
‘Is she poorly?’
‘No, we don’t think so’
‘Is Mummy poorly?’
‘No, Mummy’s fine.’
‘Ok then, why are you crying?’
To a 9.5 year old, 8 year old and 4.5 year old, ‘Down’s Syndrome’ didn’t mean anything. All we cared about was that the new baby was here. It was a girl (this had repercussions about who was going to get their own room, it had all hinged on whether the baby was a boy or a girl!) and she had arrived in time for Christmas in late December, 1998.
That same day was the Nativity rehearsal at our family church. My best friend and her Mum were at the practice. ‘Mummy’s had the baby, it’s a girl, her name is Alice Megan and she has Down’s Syndrome’. I was as proud of this new fact as I was of the beautiful name my parents had given her. ‘Oh I’m so sorry’ – the Mum looked crestfallen. ‘Why? The baby is cute!’ and I ran off to join the other Angels by the pulpit.
It didn’t mean a thing.
In the days, weeks and months that followed. My parents gently explained more about Down’s Syndrome, as they discovered what it meant for Alice. Books were bought that explained it in terms a child could understand – one picture book sticks in my memory, it was a great myth buster. One myth it tackled was ‘they all look the same’ and it stated ‘in fact, your brother or sister with Down’s Syndrome will look more like you and your parents than they will someone else with Down’s Syndrome’. The book was right! Alice has the strawberry blonde hair that is characteristic of the girls in our family, she has the ‘Saunders nose’ and the cheeky grin my brother bears.
Dad once said to me that having a child with Down’s Syndrome ‘isn’t better or worse, it’s just different’. Each one of us siblings are different, with our own challenges, victories and abilities – just so, Alice bounded onto the scene – lighting up the room, with her own incredible personality that perfectly meshed into our family unit that never was complete until she came along.
One of the saddest things I get asked as a sibling of someone with a learning disability is ‘oh but isn’t it sad you’ll have to look after her when you’re older’ or ‘you’ll always have her living with you’.
Will I? Fantastic! I can’t wait to have Alice’s input into my family life as we move through the stages. She’s a brilliant Aunty to our 18 month old nephew and incredibly excited that our sister is pregnant with her second child. Chances are, I will be supported by Alice, not the other way around. Chances are, Alice will guide and educate me just as she has in so many ways since she arrived in our lives. Chances are, Alice will live in her own home with her own life and won’t want her interfering big sister being ‘boring’ anyway!
There will always be room for Alice in our home if she wants to come and stay for a while or live with us longer term. The same offer will be open to my younger brother if he wants to base himself with us and we’ll always come to the aid of my sister and her husband if they need us. It’s just as likely that one of our other siblings will need extra support during the next 60+ years as it is Alice will. I’ll let you into a secret – she’s not that different.
If Alice needs support in order to continue to achieve, then we’ll make sure she has it. There wouldn’t be a second-thought.
We know and understand her needs, we know how she ticks, what she loves to do. We’ve seen her at her happiest and at her most sad. We’ve watched her perform on stage and we’ve celebrated exam success. We’ve helped nurse her and we’ve been nursed by her. She’s our sister and she brings strength, light and colour to our lives. Don’t you dare call her a burden.
Next week, our parents are going off to Barcelona for a few nights. Their 30th Wedding Anniversary present. My sister and brother-in-law are having Alice (now 17) to stay and will drop her off to college each day as they live locally enough to do that. My brother is looking after their dog. Those were easy things to put into place, we didn’t have to flip a coin about whose turn it was to look after Alice and Blue (the dog!), we didn’t have to barter or nag for someone to take responsibility. It just happened and everyone is excited. Alice gets to spend more time with her nephew and she couldn’t be happier.
It’s not a burden, it’s not a chore, it’s not a weight on my shoulders – it’s family.
That’s what we do. That’s what we’ll always do.
So yes, think about the siblings. Think about the way they’ll know how to make sure games are accessible to all, how they’ll learn to communicate in different ways. Think about how they’ll help their sibling learn to tackle new things head on. Think about the trips they’ll take with each other and the adventures they’ll embark on. Think about the excitement they’ll share as they see the world from a different perspective and think about the bonds they will have with their sibling that will see them fiercely protect each other against ignorance.
But please, don’t pity them.
Tomorrow, Wednesday 5th October on BBC Two at 9pm a documentary is being broadcast that looks at ‘A World Without Down’s Syndrome?’ presented by the incredible Sally Phillips. Please take the time to watch and join in the debate using the hashtag #WorldWithoutDowns #ThinkAgain