THE BLOG
21/03/2018 08:48 GMT | Updated 21/03/2018 08:48 GMT

What I Have Learnt Since Becoming An 'Expert' In Down Syndrome

My daughter is not ‘special’ or ‘inspiring’ but an essential part of our family and community

Downs Side Up
Our baby showed us the way

Eleven years ago I knew nothing more than a handful of outdated generalisations about Down’s syndrome. Like many of you I undoubtedly thought I knew what it meant, how those who have the condition live their lives. But the notions I clung to when pregnant with our second, much-wanted baby, couldn’t have been further from my current reality.

This World Down Syndrome Day, marked each year on the 21st of March - representing the 3 copies of chromosome 21 that those with the condition have - people with Down’s syndrome are sharing photos and stories to let the world know #WhatIBringToMyCommunity and that #InclusionMatters.

I’d love to share with you what I have learnt since becoming an ‘expert’ in Down’s syndrome. An expert through lived experience only of course, the kind of expert every single parent becomes after a steep initial learning curve and many hours of learning through trial and error. I want to show you what my youngest daughter brings to our world.

As long as the baby’s healthy

So just over a decade ago, the only thought that crossed my mind as I washed and folded tiny hand-me-down baby grows was that I didn’t care what the sex of our baby was, just as long as he or she was healthy. Perhaps it was the arrogance of naivety speaking, or perhaps the pregnancy manuals and multi vitamins had literally ‘bought’ me the peace of mind I thought I needed.

Either way, two weeks before her due date, our youngest decided to make an early entrance and we calmly put our plans for a home birth into action. Our toddler went to stay with her beloved Godmother and my husband set about warming our draughty house. A straightforward labour later, a nest of pillows and words of gentle encouragement welcomed our little one into the world. She arrived easily, all at once, but floppy, silent and blue.

But instead of making me comfortable and helping us feed our infant, there was a panic in the air from the professionals in the room. Looking back perhaps it was more of an urgency. An emergency even...

I found myself unable to ask a question, while my husband stood in the freezing street outside, waiting for the ambulance he’d been urged to call. Time stood still for him as he waited for medical assistance to arrive, not knowing if his newborn was clinging to life inside the family home.

Our midwife cried

Carrying our baby proudly into the hospital was the last time she would feel like ours for quite some time. She was taken from my husband’s arms to the Neo-Natal Intensive Care Unit and from thereon in we became part of a medical machine. Midwives flitted through our space, wearing that kind of smile people force when they feel sorry for you, or when they are avoiding a difficult subject.

As time ticked on a panic began to rise. This had to mean ‘bad news’ was on th horizon.

After an almost insufferable eternity we were joined by a consultant, there in that clinical maternity side room, distant from our precious baby. The words we had dared not allow ourselves to contemplate were delivered, “I’ve looked at your baby, and I think she has Down’s syndrome.”

His tone was neutral enough, but as our community midwife cried I went into physical shock.

My ableist subconscience was at work

The tears, the formality, the shock all set the scene of overwhelming hopelessness. And the questions that tumbled through my head were testament to my ableist view of the world back then. I wondered what the impact on her big sister would be, whether we’d ever travel again, if she’d go to mainstream school or ever marry. I wanted to know how she’d look and what she would wear. I thought she’d be quiet, ignored or stared at and for some reason I wanted immediate answers to these questions that now seem so ridiculous.

I was consumed with fear but I was so very wrong. Our lives today bear no resemblance to that early picture in my head, but regardless of our daughter’s abilities we should have known we’d love her unconditionally and be immensely proud of who she became. So where did that fear stem from?

I believe that as a society we have created an urban myth with a protagonist called ‘Down’. Medics tell us they are sorry as they figure out ‘probabilities of risk’ that our babies might have an extra chromosome. They describe the condition as a set of medical characteristics which they soberly refer to as ‘co-morbitidies’. Then we pregnant women pass the baton of fear from one to another with no lived experience on which to base it. Our society either pities, patronises or punishes those with a disability and the mainstream media tends to portray Down’s syndrome as an undesirable trait to be eradicated.

Words shape our thinking, and the picture portrayed for me was certainly one of no hope. Not because of that extra chromosome itself, but because of a constrictive narrative created around that one aspect of our daughter’s being.

Those who showed us the way

A wise midwife told me to simply love my baby. She was the first to make up a safety net thrown around us by those who cared, all to eager to show us the way. Then came the experienced parents further down the line who told us it would all be OK. Family closed in around us, driving hours to come and meet our precious new addition and bring their congratulations. There were medical angels who not only stabilised our baby, who in fact had a shaky start in life because of a heart condition, but who also helped us believe we could do this, usually over milky tea chats in the wee small hours. Then came the helpful resources from various support groups.

But the greatest teachers of all were our girls who led the way, our two year old and a newborn. And we named her Hope.

These children dismantled the fear and replaced it with love and acceptance. Both were completely unaware of the stigma attached to our baby’s genetic make-up, they had never heard the words ‘Down’s syndrome’ before. They had an immediate bond, and whilst I was worrying about planning our youngest’s entire life in her first moments of being in our world, they took each moment as it came and enjoyed it for what it was.

Down’s syndrome is...

  • Beauty - What we’ve learnt over the years is that Down’s syndrome is beautiful. Our little one went on to become a clothing model, but regardless of conventional beauty, our children ooze a kind of charisma, the most wonderful smiles and genuine beauty and honesty that radiates from within.
  • Caring - Our daughter has a deep-rooted wisdom and is finely tuned to the feelings of others, knowing when a hug or a smile, or even when to turn her back, is the right thing to do. In our hurly-burly world, surely we need to value those who are sensitive to others more.
  • Brutally honest - Why sugar-coat how you are feeling when you can just come out and say it! Dance in the isles if you see your favourite cereal, pull a cross face if you are disappointed and compliment people on their most prominent features. It’s quite refreshing and can have wonderful comic effects.
  • Determined and inventive - Working out ways to smash through barriers in their own way is our children’s forté, whether working out new ways of saying and signing a phrase to get have their needs met, or pushing through physical hurdles to achieve what others take for granted such as walking. We have so much to learn from their resilience.
  • Being one of the gang - our daughter looks like her family, enjoys the same food, music and travels. She mucks in with household chores and local events. She is just one of the crowd and having Down’s syndrome is just one part of who she is, albeit an important part.

There have been challenges along the way

As for all of us in life, there have been challenges along the way. Keyhole heart surgery at the age of two was the most frightening time of our lives. Our daughter is also small for her age and needs help communicating, but much of what limits her exists in others’ minds. When those barriers are lifted, very little will stop her from being the very best that she can be.

She is not ‘special’ or ‘inspiring’ but she is an essential part of our family and community. In the perfect blend, surely there is a role for everybody in society and those who can make us laugh, entertain us in our darkest moments or soothe our spirits should be just as revered as those who can pass exams with flying colours.

I learnt very quickly not to doubt my ability to parent a child with Down’s syndrome and I now see myself as one of the lucky few. And perhaps if I had seen the #WhatIBringToMyCommunity stories all those years ago, I’d have got off to a much more solid start. Thank you World Down Syndrome Day.

This post was taken from Hayley Goleniowska’s TedX Truro talk: Removing the Fear of Down’s Syndrome