Getting to Know Rosie – March 2014

MY wife noticed first.

Barely half an hour had passed since the birth of our second daughter, Rosie, when Victoria remarked that she couldn’t tell who the baby looked like. She then asked if I thought she had Down’s Syndrome. I laughed at first, thinking that the drugs from the caesarean section were still affecting Victoria’s brain. Then I looked at Rosie again. All of a sudden, I could see nothing else. I had been holding her proud as punch until that moment. Now I put her down. I made my excuses and went to the toilet, still belittling any such ideas as nonsense but saying that we would ask the nurses. My toilet visit was actually an intensive smartphone session on Google Images using the search term “babies with Down’s Syndrome”. I knew it was true. This was a worst-case scenario as far as I could imagine. The one thing you don’t want to happen had happened to us.
The first crack appeared in the theory that nothing worse could happen when we were taken to get Rosie’s heart echo done. (Children with Down’s Syndrome are prone to heart problems.) The echo came back fine, and we were escorted back along a corridor through the special dependency, high dependency and intensive care units. There we witnessed large numbers of sleep-deprived and grief-stricken parents who had not expected to be in just a week before. I asked the nurse if it was unusual for it to be so busy. “No,” she said. “It’s always full here.” Here we were, walking by with our seemingly perfectly healthy child, and all of a sudden I felt a bit of a fraud.

That’s when the confusion began that has led me to write this a year later, just after celebrating Rosie’s first birthday and ahead of World Down’s Syndrome Awareness Day. Why were we so bothered? Why did we think this was a “worst-case scenario” when I had just witnessed rooms full of people dealing with worse situations that few people really waste much prenatal time worrying about?

Because people do worry about Down’s Syndrome. I believe one of the most significant reasons for the push to have children by a certain age is the fear of giving birth to a child with the condition. And, if I’m honest, my wife and I had shared that fear. When Victoria became pregnant we were both in our early 30s and beginning to push the statistical boundaries of increased risk of having a baby with Down’s Syndrome.
You can take a test for the condition, but a Catholic upbringing gave Victoria the conviction that she would not terminate, irrespective of the result. Testing, therefore, seemed pointless. I am not religious but I’m pretty logical and the low probability of Down’s Syndrome was all I needed to put it out of my mind.

When people are asked how they would react to a positive result, most people say they’d bring the baby into the world anyway. The reality is that when faced with that exact situation, the vast majority react rather differently, with a whopping 94% of pre-natal diagnoses resulting in termination. I find this a disturbing figure, because I believe that if we had had such a diagnosis, I would have pushed to be one of the 94% and I realise now the degree to which that decision would have been predicated on decades of learned ignorance and misconceptions.

I can think of no other subject where my eyes have been opened to such a gulf between what I believed to be true and what actually is. Over the last 12 months I have learned that Down’s Syndrome is neither awful nor does it have to be an affliction for those who have it. Children and adults with Down’s Syndrome are often very happy, contented individuals. Not only that but it appears that their capabilities, opportunities and achievements are increasing exponentially.
Once you begin to look for it, you will find individuals with Down’s Syndrome with jobs, running their own businesses, driving cars, and even obtaining degrees. The award-winning Spanish actor Pablo Pineda has a diploma in teaching, a BA in educational psychology and conducts regular speaking slots on the labour integration plan of the Adecco Foundation for which he works. I don’t know about you, but when I first read that I thought: “Poor old Pablo with his terrible affliction is doing a damn site better than I am.”

There is a strong chance that children you know are already more enlightened than you are on this subject. Abigail, our three-year-old daughter, has yet to learn society’s prejudices. She often keeps us in check by being as rough with her baby sister as she would have been if Rosie were “normal”. Of course this is because, as far as Abigail is concerned, Rosie is “normal”, while in our adult minds we still often think, “Please be gentle! She has Down’s Syndrome!” It is us who are wrong. Well, wrong to be prejudiced at least. She should still learn to be gentle with her sister.

When a family friend “broke” the news of Rosie’s condition to their 16-year-old daughter, the teenager’s nonchalant response led them to ask if she knew what Down’s Syndrome meant. “Yeah! There are kids in my class who have that,” she replied. I could not help but think how much easier those first few months would have been for us if mainstream education for Down’s Syndrome children was as prevalent in our day as it is now. This was the first point at which I realised how beneficial such integration was to society as a whole and the social development of the rest of the students – not just a measure to benefit those being integrated.
So what were those first few months actually like? Pretty awful is the honest answer. And the reason that I’m writing this article is largely because I understand that to have been totally unnecessary, and that makes me pretty angry. The first few months of a new baby should represent precious, cherished memories that you never forget. Frankly I can barely remember them, and we’ll never get them back.

What I do remember is the constant stream of well-wishers – far more than I recall arriving for our first daughter – and us falsely putting on a brave face, delivering what became a polished, well-rehearsed pitch aimed at selling the idea to everyone that we were coping extremely well.

As a couple of reasonably intelligent people, we were able to envisage precisely what good people dealing well with the situation might say, and we discovered ourselves to be incredibly adept at acting the role. On reflection, we were not acting in the truest sense of the word. These characters were us. It was just the “us” of the future. Thankfully, it is the “us” we recognise now.
In private, we had some fairly grim, but honest discussions about how we really felt. Thankfully, we never held back on some of the thoughts that passed through our minds. I think on some level we knew that the worse the thoughts we articulated to each other, the better it made the other person feel. By way of example, I recall once likening the situation to having a pet. I mean, you can still love pets, can’t you? Even if they’re not as smart as us. I can’t tell you how upset it makes me now to even think that I had that thought, but I did. So there it is.

The experience shone a bit of a light on our differences too. While my wife was worried about how Rosie looked and what people thought when they saw her, I was more concerned with what she could or could not do. I must have searched Google 1000 times during that period, treating its software algorithms like some kind of special-needs sage, with search terms always starting with “can people with Down’s Syndrome …”. To save you the trouble, the answer is seldom a no or a yes, but tends to be things like (in the example of driving a car) “it is merely a matter of them passing the test like everyone else”.

We also recognised ourselves to be going through what is commonly referred to as the grief cycle. This is certainly useful as it affirms that it is a process which at least gives you the confidence that it will end. The flipside to knowing this is that you believe you can speed it up.

I specifically recall going out for pizzas one night about three days after Rosie was home from hospital and gloating that I had felt slightly angry at some other people with “normal” kids, concluding that I must have already advanced to the “anger” stage. Complete nonsense, of course. The notion I was advancing so quickly through the process was as strong an indication that you need that I was in stage one – denial. I suspect the acting we were both doing was also part of that same stage.

Why the grief cycle? Because without any shadow of a doubt, from the moment we were told of Rosie’s condition, we felt like we had lost a child. For nine months you build a picture of the child you might have, you plan names giving him or her an identity, you envisage what your future family life will be. When you find out your child has Down’s Syndrome, all of this disappears instantaneously. Next you are consumed by your ill-informed preconceptions and so emerges a false and ugly picture of your new life.

Fight or flight starts to kick in: there must be something you can do. You didn’t plan this. Didn’t want this. Don’t want this. But there is nothing you can do. Of course, all the while you are going through this your vulnerable new baby who needs you (more than most) is waiting for you to snap out of it.

Where we were concerned, the misconception that we were facing some sort of life sentence of dependency was probably one of the root causes of our troubled first few months.

This is a gargantuan misconception that was to turn out not to be true. Better understanding of the condition, how children with Down’s Syndrome learn and the benefits of social integration measures are increasingly contributing towards a scenario where becoming independent, married, working, contributing members of society is almost ­ubiquitous as the modern goal. We must learn ourselves to separate the concept of intellect away from the speed and manner by which one can processes information. Someone with Down’s Syndrome simply learning to say, “Give me a moment to think”, can be life-changing.

Seeing these positive changes does immediately lead one to thinking ill of what has gone before. The decades of capable human beings institutionalised on the basis that they were incapable of learning, so they were never taught – and, surprise surprise, a result that affirms the hypothesis.

Today, we have as high expectations of Rosie as we do of her older sister because, as you should with all children, our expectations will be relative to whatever capabilities they both turn out to have. Of course, you’d be hard pushed to find a neurosurgeon or an astronaut with Down’s Syndrome. But then, that is true of the vast majority of society. Nonetheless, whatever Rosie’s choice of job, we are still intending on saving for her wedding.

Whether you like it or not, having children is a bit of a lottery. There are many things that can happen at birth, and things that emerge many years later. It’s probably one of this condition’s worst traits that its visual characteristics mean that parents are confronted with it before getting to bond with their child. Contrast that with conditions which lie dormant for some time but where diagnosis can be received as good news by delivering answers and potential solutions.

There are many worse things than Down’s Syndrome that can go wrong, yet people seem to worry about them far less. Not that I’m advocating worrying. Clearly, worrying (particularly while pregnant) is never a good thing. But if you insist on worrying about something, you needn’t let it be this. After a whole year of over-thinking, my most incredible revelation is how normal everything appears to be. A year ago we wanted the Down’s Syndrome to go away. Now we wouldn’t even give that back because it’s part of what makes our daughter who she is. Without it she’d be a different person altogether, and the person we’ve grown to love is Rosie.