The Ups and Downs of Down Syndrome

By Deborah O'Ferry

Today, 21 March, is World Down Syndrome Day and, in 2019, Kidspot shared an article I wrote that means a lot to me because it's about a family very special to my family. Funny, bighearted, loud, and with a, now, 17-year-old kid called Josh that has an extra chromosome...

You can read the Kidspot version here or below.

Caroline and Ryan Richardson stood in the middle of our wedding reception room and told us they were expecting a baby.

For years, Ryan, the cluckiest man I have ever met, would see babies and gush, "Let's go home and make babies," met with eye rolls from his ever-patient wife. But make a baby they did. Their dream was on his way and Caroline's belly grew magnificently to prove it.

On Saturday, 24 February 2007, Joshua was born, and the happiness was infectious.

But two weeks later, the smiles came to an abrupt end during what the Richardson's thought was a routine checkup. It was actually an appointment to break the news that their beautiful little guy was more special than they had realised. Joshy, they learnt, carried an extra chromosome 21.

In other words, Joshy had Down Syndrome.

They called us around to their house because they had news. On our arrival, we met red eyes and another couple, heavily pregnant and bracing their own baby. The small army that would support them with whatever the news was, waited with heavy hearts. The blue cards were still on display, the happy wishes an odd contrast to the devastation in front of us.

I remember Ryan sobbing into his sleeping newborn in his arms, saying he'd do anything to take that diagnosis from his son. He'd give his life if it meant his was okay.

The thing is, in those early days, they didn't know, and we didn't know, that Joshua was okay.

But life, was certainly harder.

While other mums were joining mother's groups and reading about routines, Caroline was collecting every book published about Down Syndrome. While the other parents were figuring out sleeping schedules, the Richardson's were fitting specialist appointments into theirs. There was a list of groups they joined to improve Joshy's development and to receive the empathy and guidance unique from someone who'd walked their path already.

The simple life they'd dreamt of fast became something else.

Caroline and Ryan became local advocates for families with that extra 21st Chromosome. Joshy's face became common on posters and flyers. Their army of supporters became large, and we all learnt about something we'd previously known very little about, everyone that met Joshy easily saw life differently.

12 years on and we still witness new things that Ryan and Caroline contend with, that they don't even blink at. Joshy walking around pant-less is pretty standard; the dining table moved to the lounge room; an iPad clinging together with the mightiest of covers known to mankind; indistinguishable grunts that are actually conversations; skin coloured in blue; bathing, clothed -- Normal.

When they added a baby girl to the mix three years later, Joshy's sister slotted into the cheer squad. When life had a giggle at their expense and handed them twin girls in 2017, they too joined the line-up of supporters -- and possibly two of Joshy's biggest fans.

But there are things about Down Syndrome that aren't in the textbooks that Caroline owns. You see while Joshy has the extra chromosome, it's his whole family that carries it.

I realised this one sunny day when us two mums ventured out to the park with our kids. That day, I gained the most perspective I'd ever had in the time Joshy had been a part of our lives -- and it wasn't anything from the fact sheets that Caroline could rattle off.

I learnt that they are celebrating achievements years after I've celebrated them with my kids. At 12, Joshy still wears a nappy to bed, he has only started to regularly join them at the dinner table.  Little milestones from my children, can be grand ones for Josh. A key feature of someone with Down Syndrome is that they have low muscle tone, so it takes much longer for them to develop the skills to move, eat or play. While his counterparts were running, at 19-months Joshy was starting to crawl. He started walking at 2-years-and-9-months.

The hurdles were moved to a whole different place for the Richardsons, and they had to work much harder to achieve them. At the same time, the cheers became louder and prouder.

That day, I learnt that Caroline didn't need a seat. At parties, BBQ's or the park, she does not sit down.

That she makes a lot a reference to wine and, all health recommendations aside, I will never challenge that. Self-care principles like mindfulness are great, but don't try telling that to a mum that is still cleaning up pee from living areas, and who hasn't sat down properly in 12 years.

That's she's tired, in every way. The weight of Josh is heavy mentally, physically and socially. Her tool kit for managing him would rival Mary Poppins bag any day of the week.

That it can take Joshy 30 seconds to process something. So, asking him to do something or asking a question requires 30 seconds more patience on her part for every conversation throughout the day (see wine reference).

That she needs to dig deeper, that she'll need to dig deeper for longer than other parents. Joshy will always need care and his family prepare for this every day.

That, while I have sometimes struggled to teach my kids patience with Joshy, his sisters deal with an intense brother every day. His needs are often a priority, and his eldest sister has lived this her entire nine years with an amazing grace.

That the Richardson's may not have been given the choice of a son with Down Syndrome, but they were given the choice of what to do about it and they committed themselves to every program that they could, and they handled life with the same sense of humour that they always had.

I learnt that 21 March is World Down Syndrome Day. A day that meant little to me before.

It is one of the most common chromosome disorders in the world and the day aims to educate people. Not every person with Down Syndrome has heart and kidney weaknesses, not all of them have the thick fold at the back of the neck which is assessed in utero - Joshy doesn't have this fold so his diagnosis was a complete surprise. People with Down Syndrome are as diverse as people without Down Syndrome. 

To our friends, and every family in a situation that requires digging so much deeper, World Down Syndrome Day may acknowledge the syndrome, but it also celebrates you. For the hurdles you clear, the hurdles you miss, and the greater perspective that you give to life and love.