Getting to Know Rosie – March 2014

IMG_20171101_125715

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.

10 thoughts on “Getting to Know Rosie – March 2014

  • Just read your inspiring article in Sunday Herald.

    I teach English in a high school in the far north of Scotland (but am from Ayr!!) and John Stallworthy’s poem The Almond Tree captures your experience precisely.

    The difference is he wrote it in the early 1960s. The kids in my class are always appalled when I tell them of the prevailing attitudes of that time (my own mum’s friend was advised, in 1969, to leave her newborn behind and focus on her other two ‘normal’ children).

    If you’ve not read it, you should. He’s almost as eloquent as you!!

    She is gorgeous by the way!

  • The Sunday Essay, made for intriguing reading.
    Took me back almost 49 years to when our daughter Jeanette was born. 09/05/1965.
    With God’s speed we hope to celebrate the occasion at the Portpatrick Hotel in May.
    Mary and I were only 22 when Jeanette was born no where near the “risk factor” age group mentioned in the article.
    When the doctors took me aside to suggest they run sum tests for suspected Downs I in all honesty did not know the condition to which he referred and so the emotional trauma to which your related was all to real.
    Our basic guidance was to be handed a booklet titled “To the parents of a mongol baby” the theme as I recall just hang on for a wee while and because of the major problems Jeanette is liable to confront she will not be here all that long anyway.
    I recall taking the booklet along to my G.P. a saintly man Dr. T. Reilly, it was the one and only time in a very long association I heard him using bad language, so upset was he not only by the title but also of the content and comments.
    He wrote that very day to the health authorities and I understand the leaflet was withdrawn shortly afterwards.
    Thank goodness we have moved on by leaps and bounds from those days and Sundays Article will I’m certain take that understanding to the next level.
    Is there anyone “out-there” who was confronted by that notorious booklet, or has any suggestions regards accessing a copy?
    I enjoyed the Essay very much and hopefully it will lead to further discussion and understanding on the potential for people with Downs.
    Yours sincerely,
    Pat Burt

  • Hello, I’ve just read your story in last weeks Herald, it’s truly inspiring and thought provoking. I can’t imagine how upside down your whole world felt in the beginning, I can relate in some way due to a very troublesome time with my own personal health not long after the birth of our son 2 years ago and I can empathise with the grieving aspect of those first precious few months being somehow stolen but personally I have learned to focus on the positives in my life in the here and now and all that I/we have achieved as a family and all we have yet to discover and achieve together… You clearly have a wonderful family, Rosie is absolutely beautiful, I wish you and your nearest and dearest all the very best of life 🙂

  • Great article Jamie, and what a gorgeous wee girl 🙂

    Good to hear ‘Dad’ stories – we’re not alone! I am a fellow father, and my son was unexpectedly born with DS back in Oct 2012. There are many parallels in your story and ours…

    I’m currently reading ‘A Minor Adjustment’ by Andy Merriman. I don’t know if you’ve come across it yet, but I recommend it!

    Soon to be a Glasgow resident again, so no doubt our paths may cross at some point 🙂

  • My friend told me to read your article in the Sunday Herald and I only got round to it last night. It was very inspiring and I am glad I took time to read it. We have a little boy and he is 10 months old and like Rosie has Down Syndrome. My husband and I struggled the first few months in particular as everyone you spoke to, in their opinion had to provide the worst case scenario. We were terrified! I can relate to your description that the first while was a blur. My husband and I have been gifted with a wee miracle as our little boy is amazing and our focus will always be on what he can achieve rather than what he may not. He is already at nursery as I have returned to work and I see him progress positively on a daily basis. The key is that we will encourage him to achieve his potential and ultimately be happy.

    Rosie is very cute and I think it is great a positive message is being communicated.

  • Hi Jamie

    I hope you don’t mind me getting in touch. Firstly Congratulations to you and your wife on two such beautiful wee girls. I read your article in the Herald which I picked up through a thread from the Future of Down’s FB page. Gosh…! It was moving and throat throbbing. It transported me back 17 months as our family followed an almost identical path. The only difference is that ours is a scrumptious little boy Harris James. Like Rosie, Harris was unexpectedly born with the condition and he too has an adoring big sister Matilda Rose aged 4. Oh..! By the way I am the doting granny. I am one of the group of people which I feel are forgotten when such a life changing event happens. Believe me it does not matter what age your child is when they are hurting YOU hurt. When they are grieving YOU grieve. From their cradle to your grave… How true…! However we are where we are all enjoying a different path. I have googled everything I can regarding Down’s Syndrome. I have read into the teens of books mostly positive experiences rather than medical ones. We had enough of negative comments when Harris first arrived from the medical profession. Thankfully Harris like Rosie does not have any of the major health problems which often accompanies a DS diagnosis. I only wished we could turn back the clock and enjoyed the day and weeks after he arrived. And here we are 17 months later with a mischievous little monkey who is now cruising around the furniture and climbing the stairs. The house is an assault course for us grannies with stair gates and child locks on every kitchen cupboard…! Whew….! But secretly loving it. Shhhh…don’t tell. The family are currently living in Lanark but have just sold their house and bought a new one and are moving back to Glasgow. ‘Thought for the day’ ” Sometimes on the way to the dream you get lost and find a better one ” Good luck with your blog. Hopefully our paths may cross in the future. Regards Joyce

  • I taught a Down’s syndrome girl in my English class and she was just a nornal wee lassie – if such a being exists.

    It was a Foundation class with one or two waarmers (sic) and a heid the ba’ who thought he was ‘tough’. All in that class accepted the lass as one of their peers – such a pleasure to see after my initial trepidation.

    This was at Prestwick Academy a comprehensive school so, like you, Jamie, I don’t understand why there are not more Down’s Syndrome children in comprehensive education.

    It was my privilege to teach her and I KNOW you find it humbling to have been given the opportunity to be a very proud father.

    Best wishes to all of your family

  • I have just read your recent article in the Sunday Herald. I provided information and support to new parents of children with Down’s Syndrome for over twenty years.. At no stage did I or any of my colleagues ever encourage a parent to feel that they would be anything other than their child’s biggest support, advocate and strength.

    Rosie is beautiful. That smile says it all. Her life will be full and rich because of you not despite you, Her sister, Abigail, will learn to care for others more deeply because of Rosie. It won’t feel like that every day but that too is quite normal.

    It is the job of any parent to protect their child, fight for their child and eventually to know when to let go. The letting go is something learnt during the lifetime of a child – not something you need to think too much about in the early days. Your children are young, the letting go stage is much further down the line.

    Even the “quietest” parent will find a voice when it is important.

    It was working with parents and people with Down’s syndrome that helped to create the up to date materials provided now. It was parents that stood in front of audiences of professionals fighting for more choice in education, better services from the NHS and more awareness of this condition throughout society.

    It was parents that made the biggest impact in fighting for their children to be seen as individuals with the need to be respected and valued.

    The most useful support for parents of a child with Down’s syndrome are other parents, The most useful people for a child/person with Down’s Syndrome are those people that care and love them because they will fight for them.

    Awkward statements are just that – awkward statements. Most people are well intentioned.

    26 March 2015

Leave a Reply to Joyce Crane Cancel reply

Your email address will not be published. Required fields are marked *