Living with Down syndrome: 'we can do anything'
A pizza chef, an assistant teacher, a violinist, a model and a filmmaker share their successes in life.
A year ago I could not have imagined the events that would lead me to a bridge in Glasgow on a sunny afternoon in late July. But there I was in a crowd of a thousand strangers, who would not remain strangers for long. Already I was arm in arm with a new friend.
How did I get there? Through my daughter, Greta.
In October 2017, Greta was approaching her second birthday. A content toddler, she was the best sleeper and eater of my three kids, though slower to crawl and walk than her big brothers. I told myself all children develop differently. Relax.
But I was worried. Surreptitiously I compared Greta to other kids her age in the playground. I googled. I talked with other parents. I googled some more.
Greta was walking at 18 months, just in time for her maternal child health appointment. As she became steadier on her feet, I expected the few words she was using to multiply quickly, just as her brothers' had. But they didn't.
I made an appointment to see a paediatrician and in the two-week wait, I could do nothing to slow my mind. I imagined the worst and best outcomes; from the diagnosis of an aggressive inoperable brain tumour, to being gently mocked for my anxieties, and everything in between. Or so I thought.
At that first appointment, the paediatrician was measured and kind. He examined Greta and asked me a lot of questions. Did I have an amniocentesis during pregnancy? No, prenatal testing showed no further testing was indicated. What was her birth weight? It was six pounds five ounces (2.86 kilograms) - small, but not dangerously so. Did Greta feed well? Yes. Is there a family history of learning difficulties? No.
Finally he explained that he had a suspicion about Greta’s slower development. He had noticed some "features". He told me he wouldn’t bet a thousand dollars on it but he shared his hunch with me and said there was enough in his mind to justify a test to rule it out.
My tears soaked into the pathology papers as I stuffed them into the top of the pram. Bustling out of the consulting room, I held Greta close, registering nothing beyond her squishy cheek pressing against mine.
The test results were fast-tracked. A month after that first paediatric appointment, my husband and I arrived at a second appointment with the paediatrician to find his hunch confirmed: Greta had a rare form of Down syndrome known as Mosaic Down syndrome.
Mosaic Down syndrome differs from the more common form in that only some cells have the extra copy of chromosome number 21, while the remainder have the typical 46 chromosomes. In Victoria, between 45 and 60 babies will be born with Down syndrome each year, and Mosaic Down syndrome occurs in one to two per cent of births.
I had 600 hours of sick leave accrued, I told the doctor. Should he be writing me a certificate?
He looked at Greta, babbling away as she packed blocks into the wooden trolley, and looked back at me. He smiled kindly and reminded me: "This is not a sick child." While there would be a flurry of appointments to monitor many of the health risks that came with a Down syndrome diagnosis, ultimately we would settle into a new routine. Life would go on.
Despite this reassurance, I barely slept during the next two days. Each time I found some calm, I would think of something else I had taken for granted about Greta's future and another brick would fall.
What did this diagnosis mean for Greta? Would she be happy? Would she be healthy? How would this additional 21st chromosome affect her learning? Would she go to the same school as her brothers? Would she live independently? Get a job? Find a partner? How do we tell her older brothers? Do we even need to? Her grandparents? Her childcare centre? Our friends?
Fast-forward nearly a year and I’ve learnt so much. For starters, the nuances around the language used in relation to Down syndrome. Medical professionals often use the word 'risk’ when communicating prenatal test results. They might say "The risk of having a baby with Down syndrome is 1 in 3000." Replace ‘risk’ with ‘chance’ and the same information is communicated, only with the judgement stripped away.
But I’m on a steep learning curve. Just as important is what I’ve managed to forget: misconceptions about the lives lived by people with Down syndrome. Nothing did more to dispel those misconceptions than attending this year's World Down Syndrome Congress in Glasgow.
It meant travelling to the other side of the world to spend three days with hundreds of strangers. I had to be brave. But I was lucky: my work gave me the time off, my parents helped with the flights and my husband said "go for it!".
I knew the congress would bring together people with Down syndrome, their families and professionals working to improve their lives. But what would it be like?
Lining up to register on the first morning, I got chatting to a couple behind me with two small boys, the younger straining to escape his pram. This was Arya. Just two months older than my Greta, Arya too has Down syndrome. His parents' eyes lit up when I told them about Greta. They had travelled from Iraq and knew no other children with Down syndrome. It’s not something that is talked about openly in Iraq.
Doctors had told them that Arya would not have a good life and would not go to school. Arya's father made an appointment with another doctor. The doctor did a blood test and confirmed Arya had Down syndrome. That doctor told Arya’s father the same thing: there was no chance of a good life for Arya, do not expect anything of him.
I could see the fire burning within this father as he told me his story: "That was the top doctor in our country. That is what he said."
The fire had been lit by ignorance but was fuelled by love. It was a fire I knew well.
Arya’s father was determined to prove those doctors wrong. He imagined a photo of Arya on his first day of school on the front page of his local newspaper. He would send that clipping to the doctors. He would show them what they could not see in his beautiful boy.
I too hoped to learn from experts at the congress about all the things I should be doing to help Greta reach her potential. What I did not realise was that many of those experts would be adults with Down syndrome themselves.
On the first day, Samuel Sestaro from Brazil gave a presentation about his life. He had graduated from a fashion design course – one of the first people with Down syndrome to graduate from a Brazilian university. He had worked as a model. We saw photos of his recent trip to Portugal for a performance with his theatre group. He loves his job in a school library, where part of his role is storytelling to children.
Sheri Brynard from South Africa spoke with poise, clarity and confidence. Like Samuel she was a university graduate. Sheri told us that great achievements do not necessarily come easily. She failed subjects and had to repeat them, but she persevered and she got there. To parents, she had the message "your child will be able to do many things – don’t focus on what they cannot do". And speaking about people with Down syndrome, she said: "We are proud to be who we are! Just don’t think that is all we are."
Heidi from England explained to other adults with Down syndrome how she prepared for living on her own. She had renamed her support workers "future guides" because "they guide her now and into her future". A cooking app helped her follow the recipes she needed to make nutritious dinners for herself. Her presentation ended with a photo of "me and my gorgeous boyfriend".
At the end of the first day of the congress, attendees were led across Bell's Bridge, spanning the Clyde River, by the Dundee City Pipe Band. That two of the pipers had Down syndrome was celebrated but came as no surprise. More remarkable was the fact that the sun was shining on us in Glasgow.
I walked across the bridge that afternoon with Claire-May Minett, one of the new friends I had made that day. At one point, feeling overwhelmed, she asked me to hold her arm as we negotiated the crowd. Claire was a firecracker: creative and funny. She has 2395 Facebook friends. She also has Mosaic Down syndrome.
She had a presentation to give the next day and was off to the US the following week to speak at the International Mosaic Down Syndrome Conference. We had a few drinks that night and our talk turned to what it was like to be nearing 40. We grumbled about our grey hairs and changing bodies.
Akira Osaki from Japan spoke the next day about the different jobs he had been able to try as part of a job experience program. This tall Japanese man presented his speech confidently in English.
Working in hospitality in central London was a dream job for Sarah Merriman. She joked about how far she had come since she accidentally peeled the wrong end of the asparagus on the TV show Kitchen Impossible. Sarah spoke on stage to the whole conference alongside her dad, Andy. He finished with a quote by Proust: "Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom."
At lunch on the last day, I chatted with Niamh from Ireland and her mum Brid. Niamh told me she worked for the solicitor in her home town of Ennis and had another job at the local newspaper. As we spoke, a violin was being played beautifully in the background (I have never been able to master it in all my years of lessons). The violinist was Pearl Luethy, a young woman with Down syndrome. I heard later that she also spoke three languages and had just returned from scuba diving in Bali. Seems there are over-achievers in every crowd.
These determined adults were reflecting possibilities back to me. Possibilities I could see for Greta. But most of all, I was drawn to the ordinariness of these lives. Young adults desperate for the chance to live away from their parents and doing everything to make that happen, studying, getting jobs, following the soccer, enjoying a beer. Just living their lives.
I spoke with many parents of young children, the youngest a boy just four months old. As mums and dads, we filed each story away, knowing we might need them in the future to remind others of the huge potential within each of our kids.
In two years' time families and professionals will be gathering again in Dubai, then in 2022 it will be Brisbane's turn to host the congress.
Sam Ross, a woman in her late 20s, was one of the three lead commissioners selected as official hosts of the Glasgow congress. I sat in the audience with her dad as she made her way to the lectern to speak. A thick-set bloke with a diamond earring, her father sat with his arms crossed and told me in his Glaswegian accent that he was more nervous than Sam.
We laughed together as she told the audience about her first job. It had not gone well. Before a shift, she would stay up watching TV and arrive tired, sometimes finding a quiet room for a nap. She ate all the sandwiches she was meant to be selling. But she had learnt from her mistakes and she was managing her time much better in her new job.
After her presentation, Sam made a beeline for her Dad and gave him the biggest hug. "I love you dad," she said. This tough Glaswegian was wiping his eyes. We all were.
"Sam was born nearly 30 year ago," he told me. "There was a wee bit o' discrimination back then. But we dinnae care."
That message, whether in a voice from Glasgow or Iraq or any of the 90 countries represented at the congress, was the glue that bound us. We would not be told what our kids could or could not do. Collectively, we "dinnae care" about artificial constraints. If they couldn’t be ignored, we would push them over. If they weren’t easily budged, we would work together and - though it might take time - eventually we would see them topple.
Not even three years old, with pigtails bobbing in the direction of the nearest babycino, my Greta flashes her cheeky smile at an old man sitting outside our local cafe. He smiles back.
The ignoring, pushing and toppling has already begun.