October is Down Syndrome Awareness Month. There are so many misconceptions about it and the people who have Down Syndrome. BritMums member Hayley Newman didn’t know much about the condition until her daughter Natty was born.
It spurred her to become an advocate and campaigner. Here, Hayley who tweets at @DownsSideUp, shares her experience, adapted from her TedX talk Down’s Syndrome: Beyond Belief.
Each October, Down Syndrome Awareness Month is like a fluttering flag pole that I lean on as I draw breath and reflect on my ever-changing journey as Mum to Natty, 13, as old-time parenting blogger and campaigner within the special needs community.
I’ve come a long way since the shellshock of the unexpected news of Down’s syndrome somberly broke through endless hours of waiting in a hospital side room. Medics had been tip-toeing around the elephant in the room, making jovial small talk and wearing the kind of smile one wears when preparing to sugar-coat a bitter pill.
Getting the news about my daughter
My home-birth-newborn lay in a NICU ward apart from me, and in an instant when I heard those words all the dreams I had for her evaporated. They vanished in a puff of outdated stereotypes and trumped up fears amid a snow storm of sorries, tears, too many leaflets about disability support groups and heart conditions and a poem about an unplanned trip to Holland.
Instantly I wondered what the impact would be on my baby’s sister Mia. I wanted to know if she’d ever marry and I felt sure our family would never again visit the neighbouring beach or holiday abroad. Shamefully, I saw her as Down’s syndrome personified, wearing a Mickey Mouse T shirt, glasses that slipped to the end of her nose, and a national health haircut.
My ableist subconscience was in full flow.
‘It didn’t seem fair’
It didn’t seem fair, I’d taken the right amount of folic acid, rested well, yoga-stretched and visualised flower petals opening. I naively thought that just saying I didn’t mind what sex my baby was as long as it was healthy gave me an automatic pass to that club.
It had to be my fault though, maybe the shell-on prawns I’d eaten against perceived wisdom were to blame? Or my old eggs…
And mostly I was afraid to love her in case I lost her and I was terrified that I wouldn’t be up to the job of being her Mum.
In hindsight, I see that I had a crafted a bubble of belief containing everything I thought I knew about the condition. It was burst with a flamboyant Natty-shaped pin. And it’s clear to see how I got it so very wrong in the early days.
The fear around Down Syndrome
Our society pities, punishes or at best patronises disability in all its forms and has created a frightening myth around the extra chromosome. The baton of fear is passed on to pregnant women with talk of risk factors, medical characteristics, co-morbidities, screening, identification and, as if for a cancer, eradication.
The reality around Down Syndrome
Our reality, however, is a colourful piñata of chaos, fun, laughter and yes, some hurdles and worries, as well as an overriding feeling of gratitude that this incredible young woman is in our life.
And because the words of others that shaped my thinking when she was born were of little hope, Hope then became a fitting middle name for our Natty. And Hope became the ticket to an even more exclusive club than I ever dreamt I’d be a part of. As actor and Mum Sally Phillips says, “A well-kept secret club no-one wants to be a part of until they are in it, but where all the best people are found.”
How my thinking about Down Syndrome changed
My beliefs have been challenged and shaped by lived experience now. Gone are those burdensome sound bites. ‘They’re’ slow/stubborn/cute/musical and loving.’ Now I see beauty, hilarity, fierce determination, creativity, a caring nature and brutal, often embarrassing honesty about strangers’ physical appearances.
Natty is a unique, valued girl who is not inspiring or special, but for whom nothing will prevent her from achieving her goals with the right opportunities and some thoughtful adjustments.
She has exceeded every expectation, travelled the world, tried scuba diving, ridden horses and modeled for umpteen companies. More importantly, Natty can soothe the saddest of hearts with a smile or make a room erupt with laughter with a well-timed and purposeful fart. And heaven knows, these are the attributes that we all need most right now.
Down Syndrome Facts
There are more than 4 million people with Down’s syndrome worldwide and around 2 babies are born each day here in the UK.
Down’s syndrome is present when there are three copies of the 21st chromosome. The most common form is Trisomy 21, rarer forms are Translocation and Mosaic Down’s syndrome.
Down’s syndrome is not a disease, is not contagious and people do not ‘suffer’ from the condition.
The average life expectancy of an adult with Down’s syndrome in the UK is 65 years, with many people living into their 70’s and beyond.
The condition was first described by John Langdon Down in 1866.
The use of the apostrophe in Down(’s) depends on where you live in the world.
Down’s syndrome is one small part of a person’s identity and doesn’t define them. Those with Down’s syndrome experience the same emotions, moods, loves and fears as anyone else.
Many adults with Down’s syndrome can lead independent lives, have jobs, homes and full social lives, enjoy friendships and have loving relationships and marry if they wish. 99% report being happy with their lives.