My youngest daughter Nina was born in August 2010. The day after her birth, we suspected something was not quite right with our new baby. We were later told by the senior Doctor, that Nina did, in fact, have Down’s syndrome. This was a complete shock to us. We had no inkling during pregnancy, and with no instances of the condition in our families, we were thrown into uncharted territory.
At that point, I learned my first lesson as a dad of a child born with Down’s syndrome – hospitals and doctors are not the best places or people to provide impartial, objective advice and guidance to parents struggling with the impact of receiving this information about their new baby.
I’m ashamed to admit now, the thoughts that passed through my head, at this point, on being told that my child was disabled and how sorry everyone was for us. What should have been said was “congratulations, you’re one of the lucky ones, you have a child born with Down’s syndrome, welcome to the community.”
On leaving hospital that day, I came home and immediately searched the internet for information about Down’s syndrome. I needed to make sense of it and learn more about what I was dealing with. I needed information and facts.
The first website I found was Down’s Syndrome Scotland. After spending hours reading up on the subject, I realised that people with the condition come in all shapes and sizes and that all the stereotypical images that I associated with Down’s syndrome were false. I also learned that all the negative emotion that I was feeling, at the time, was normal and many other parents had experienced similar emotions.
Within 24 hours, my world view had changed, I thought at the time and still do to this day, “I can handle this, this isn’t the end of the world”, no matter who says it is.
This was for me, an important first step. It was the beginning of choosing my approach and attitude, as to how I was going to deal with this life challenge. I was also very aware that I was going to have to change and being a dad of a child born with Down’s syndrome, was an opportunity for me to grow and evolve, even if at times, I was reticent of that change, and often felt out my comfort zone.
Tony Robbins once said, “it’s not the events in our life that shape us, but what we do with them that counts”. I believe in this completely. As a dad, I get to choose my response, and my choice was to completely embrace that I’m the father of a child born with Down’s syndrome and not take a backward step with it.
Of course, there are pro’s and con’s to this approach. For example, I learned to appreciate Nina’s achievements all the more readily and to accept that she might be
behind her peer group in certain areas, particularly at school, and not to worry about this.
I learned that acceptance is the key and to let go of my resistance to things, that I can’t change or control. I also learned that children born with Down’s syndrome have as much talent and potential, as other children, and we chose to focus completely on the things that she’s good that, to take a strength-based approach and not waste a moment getting anxious about the things she’s not good at, or is uninterested in. To be honest though, there is very little that Nina is uninterested in, her curiosity and willingness to try new things is huge. The results of this approach are a very happy and contented child and a relaxed dad for most of the time!
At the time of writing (May 18), Nina is now 7 years of age and has just completed Primary 2 of a mainstream school. She is an incredible child, who reads and writes, she is a street dancer, goes to Rainbows, and is learning to swim. She also has a wide circle of friends and sees nothing, but smiles, wherever she goes. She lights up a room with her presence and is the very definition of “normal,” whatever that means these days?
Her Down’s syndrome doesn’t define her nor me. It’s just one tiny part of who she is.
As her dad, she’s the best thing that’s ever happened to me. By simply being around her, it has helped me to look at, and reflect on, how society views children born with the condition and with Nina’s help, to completely subvert those clichés.
In truth, I don’t waste a moment of my life worrying about society’s inbuilt bias and prejudices, because I believe that Nina and other children like her, will bring down those barriers, by the sheer force of their personalities, and demands to have the same life expectations, as everyone else. I’m optimistic about this.
What are those expectations? The right to have a full and happy life, the right to have a well-paid, meaningful job, the right to live independently, to have positive relationships, and to be treated equally and be recognised as valued members of the community. The same as you and me.
My job as her dad is to help and support her in these aims. I know that there are many challenges ahead for Nina, but that’s equally true of my older daughter, who doesn’t have Down’s syndrome – different challenges, same response. I don’t mind sharing that Nina simply makes me happy every day and I’m grateful for every moment that I get to spend with her. She’s ready for the future and I am too
One of the most exciting events to happen to us is Down Syndrome Scotland being chosen to host the World Down Syndrome Congress 2018 in our home city of Glasgow – for us this is like being chosen to host the World Cup. The Congress brings the worldwide Down’s syndrome community to Glasgow, and it’s a massive opportunity to highlight the achievements of people born with the condition and to exchange information and celebrate the success of the Down’s syndrome community.