Finding out your child has Down’s Syndrome can be a life changing moment. What should be a time of celebration is often turned into a conversation of facts, figures and the bleak future that lies ahead (which of course isn’t true). In celebration of World Downs Syndrome Day, we sat down with Caroline White, author of The Label, to find out more about what led her to write this book – a story for families dealing with their baby’s diagnosis.
Caroline, first things first, what inspired you to write the book?
When my son Seb was diagnosed with Down’s syndrome nine years ago, I knew nothing about the condition. I threw myself into researching Down’s syndrome and ordered lots and lots of books. All the books I read were very clinical and listed all the potential health problems we might face, the physical characteristics of Down’s syndrome and the associated learning difficulties. The books painted such a bleak future and they added to the fear I was already feeling. I didn’t feel like “me” anymore and every time I looked at my baby I saw “Down’s syndrome”. Our reality could not be further from that initial outlook and I wanted to write a book to help new parents see beyond the diagnosis and not be so weighed down by the label. It was really important to me that the book was beautifully illustrated too - a book that I would actually want to receive.
The world is a much richer place for having Seb in it, he has such a lust for life and sees the beauty in everything.
Can you describe the moment you discovered Seb had Down’s syndrome?
At first I didn’t realise that the medical professionals were talking about Down’s syndrome. It was only when I typed the notes from Seb’s precious red book (for reassurance!) into Google that it hit me. Line after line on the search page said “Down’s syndrome”. I remember complete panic filling my whole being, I felt sick and hot and just a feeling of total disbelief that that could be happening to me – and my baby. I wanted to scoop him up in my arms and run away and I was so confused by how I was feeling. I was full of maternal love for him but at the same time I didn’t want this to be happening. Luckily I was in a ward with other new mums so I had to hold myself together behind the curtain, but it was really tough. It was a week later that we had the formal blood test results confirmed. I had been clinging to the hope that they had got it wrong. But obviously they hadn’t. At the time it felt like someone had drawn a big, heavy line right through the middle of my life. What should have been the happiest milestone for me, becoming a mum, was the worst. I guess I felt cheated and it took a long time to get over that.
What was the support offered to you at the time like?
The support was ok. It was just quite overwhelming. The NHS are fantastic at proactively checking for potential health problems, such as heart and thyroid problems, and we had endless appointments. We were given a physiotherapy and speech therapy group to join which was good for meeting other parents in the same situation. Back then social media was in its infancy and I wish it had been more established as I think it is a great way to connect with other parents and read real life experience, rather than text books. The paediatrician who was responsible for Seb’s ongoing health care plan will always stand out as a huge help. He was always really interested in Seb and his diagnosis was secondary.
In your opinion, what is the biggest misconception around down’s syndrome and what can we do to overcome this?
There are so many! Most people still think that people with DS are almost a sub species. People with DS are just the same as everyone else – but just need a little extra support to achieve things that come more easily to others. Seb is a typical kid, he is really sporty, he is witty and bright, loves football and skateboarding. He goes to a mainstream school, reads, writes, does maths. He isn’t “always happy” – another misconception – he has the same mix of emotions as anyone and is more like his family than another person with Down’s syndrome. Sadly a lot of people seem to think people with DS are of less value too, something which I find really hurtful. The world is a much richer place for having Seb in it, he has such a lust for life and sees the beauty in everything. He has an incredible way of engaging with others and I see the magic and mischief he wafts wherever he goes. I believe that people with DS are our best tool in changing perceptions and the answer is inclusion. Inclusion in schools, communities, clubs etc. I have faith that inclusion will breed a new generation of acceptance and children growing up with children of all abilities will see a person not a condition.
If you could go back in time, what is the one piece of information you wish you had known the day before you gave birth?
I would say to myself not to look too far ahead, stop, breathe and have faith that one day it will all make sense and you will wonder what on earth you were so upset about.
What would your advice be to new mothers struggling with their childs diagnosis?
My advice is don’t be too hard on yourself. Don’t feel bad about how you are feeling. Try to remember that your baby is still your baby and not “down’s syndrome”. Your baby will be a reflection of you and your family and their life experiences. A diagnosis is important in terms of understanding certain behaviours and characteristics but it is only a very small part of who your baby is. And I promise you your baby will enrich your life beyond measure and you will look back and wonder why on earth you were ever so sad. There will be extra challenges ahead, but you will celebrate every milestone with a sense of pride you never knew was possible.
The Label is published by Ivy Press, with 10% of the sales of each book going to Mencap. You can find out more about Caroline's book here.