Life

7 things no one tells you about being a mum of a child with Down's syndrome

Actress and blogger Claire Farrington shares some of the amazing things she's learned since the birth of her son Theo

Claire Farrington, partner Andrew Papadimitriou and their son Theo

RAISING a child with Down's Syndrome can be unpredictable but, above all, hugely rewarding and life-affirming, says Claire Farrington (41). Two years ago, she and her partner Andrew Papadimitriou welcomed their son Theo into the world 11 weeks premature, and three weeks later, they discovered he had the genetic condition.

Here, the mother-of-one from London, who writes the blog Mum On a Different Path (mumonadifferentpath.wordpress.com), shares some of things she's learned over the last two years.

1. It's important to take it day by day

When I envisioned my family years before we three were a reality, I didn't give one thought to the number of chromosomes we'd have. Down's Syndrome was a world far away from me – obscured and shrouded by out-of-date assumptions.

But when the future becomes totally unknown, just as it did when Theo was diagnosed, you fear it. What really threw me at the beginning was not knowing what life could be like for my son. Suddenly I had so many questions about what I had blithely taken for granted. Would he walk, talk, be independent, get married, travel, have a job?

But why did I have to try to see the future for someone who was only weeks old? Do we know all the answers with a typical child? Of course not. Life never comes with guarantees.

I can honestly say the last 24 months of being Theo's mum have been the best and the most enriching of times. Just as the future can be daunting due to the unfamiliarity, the future can be incredible, too, for exactly the same reason.

2. Not everything is linked to Down's Syndrome

At the beginning, Down's Syndrome was the first thing I thought about as soon as I woke up. At first, I would attribute all of Theo's behaviour, health, habits and actions to the condition. If he got a little sick, it was Down's Syndrome. If he refused new food: Down's Syndrome. Equally, his easy-going nature and distinct lack of screaming: Down's Syndrome.

He was the most sociable child in the nursery, but was that the Down's Syndrome? No, actually. It was Theo.

It's really important to remember that the personality you see developing in front of your eyes is unique and made up from a sum of many different parts. Yes, Theo wouldn't be Theo without his extra chromosome, but he wouldn't be Theo without everything else in his life either.

3. The ordinary can be amazing

I can now leave Theo with a pot of yogurt and a spoon and it all goes in, mostly. And I'm amazed – it's a real achievement for a little boy, not only born at 29 weeks, but born with low muscle tone. Most physical activities will take much longer for Theo, so I love a win in gross-motor skills.

I was also ridiculously happy seeing my son learn his first bit of sign language. Being a mum of a child with Down's Syndrome grounds you like nothing else. You're given a gratefulness for the straightforward, everyday stuff that you would normally just expect to happen. When it finally it does, it's pure gold dust.

'If we're in a restaurant, Theo will make everyone around him smile'

4. You inherit an armour

After the tsunami of grief, tears and fear, you emerge stronger, with a stoic appreciation for any family who've had to deal with uncertainty over their child's health. And you're ready to fight your corner so the world sees your son or daughter as just as worthy as the next.

Some days it doesn't feel like a fight, but on the days it does, you find a strength you didn't think you had. Never before did I feel so galvanised and so ready to speak up. All parents of a child with Down's Syndrome are advocates – which is quite a journey from the initial slew of feelings the diagnosis brings.

5. You gain a new community

The NHS page explaining Down's Syndrome – probably the first thing many new parents find themselves reading – is clinical and didn't give me much of a clue. But I also found blogs-a-plenty, Instagram accounts in their thousands, videos, shared advice, a camaraderie and a virtual community in which we felt at home and supported.

I consumed everything I found online – parents expressing their pride, their love and, yes, their frustrations with their children. Soon I was sharing tips and the long-awaited achievements with an incredible congregation of parents.

6. Your child will shift perceptions all by themselves

I remember browsing shops in the early days and passers-by would linger a little longer. I was always hyper-aware of the looks we'd get. Now, I don't mind at all. In fact, I've come to believe it's rather a privilege. If we're in a restaurant, Theo will make everyone around him smile. We've made so many lovely dinner companions and bus buddies, and all the time, I know Theo is ever so slightly altering perceptions.

7. You'll be a different person

Post Theo, I have naturally re-evaluated everything and it's completely reshaped me. Yes, it sounds corny, but I know I'm a better person because of my son and his Down's Syndrome.

Theo

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