Warrior Mum ♦Parent Activist ♦ Campaigner
These are phrases frequently applied to SEN parents, you might even label yourself this way. I've had the titles attached to me over the years, by bloggers, journalists and authors.
The funny thing is, I never see myself that way. To me, Mummy means gentleness, firm guidance, a hug and a kiss after a bumped knee, a furrowed brow during times of illness or surgery, the bravery to slap on a reassuring smile no matter how much your heart aches. It's giving reassurance on a windy night, making homework fun and understandable, hiding a multitude of veg in food. It's providing a human, fallible role model.
The advocacy part is simply doing what all parents do, which is to make the world the best place possible for future generations. I guess there are many ways of skinning a cat; of being an activist. The image of banner holding, chaining yourself to public buildings or climbing aloft the tallest tower to shout your mission always springs to mind first, but I've never been very good at that kind of action.
The last time I wishy-washily took part in any protest was during my university years, when I might have marched in clement weather to save the rainforest, turned veggie because the best cook in our house was, or sat all night in a library wearing an anti-Poll Tax T-shirt while drinking coffee with a rugby player who'd caught my eye. I've never been a particularly fervent political animal.
Twenty *ahem* years on and my life has become dominated by the desire to change the way the world views Down's syndrome; they way some see it has a defect to be eradicated. This time my method of choice is the simple word, not a rant or moan (well, not often) despite the hurt in my soul at times. A gentle nudge and the understanding of why people harbour the ignorance they do; for that was me once upon a time, before Natty entered our lives.
So I've chosen to set out our stall with positive and interesting artefacts that draw folk in. Once there they will engage with us and they'll leave with a smile on their face and a deeper understanding of Down's syndrome that they didn't realise they needed. The won't feel preached to, or foolish for 'getting it wrong', but they will remember that encounter.
This week I decided to approach Dr Nicolaides in order to perhaps reach more parents who need a little Downs Side Up in their lives. Dr Nicolaides is known worldwide as the 'Father of fetal medicine' and works from his clinic Fetal Medicine Centre in Harley Street. He is often seen on television discussing his IVF and antenatal surgery techniques to save babies, which many hail as 'miraculous'.
More recently, Dr Nicolaides has devised a new, 'safer', non-invasive early test to accurately diagnose Down's syndrome in foetuses. It is considered controversial, but he says that he is catering for the demand of his clients.
On the ethics of his work, Nicolaides concedes: "Yes, I am playing God - if life is absolute. I interfere in the life of an unborn child, either performing an operation to save it, or supporting the parents in a termination. I understand those who say I'm a murderer. Many nights I lie awake wondering, 'What am I doing? Am I playing God? Do I have the right?'" [Source: Radio Times 2002]
My thoughts on the 92% termination rate for babies with Trisomy 21 is not for here.
But a tiny, gentle, voice in my head told me that Dr Nicolaides might appreciate a copy of our eldest daughter's new book, a sibling's delightful introduction to Down's syndrome and a beautiful snapshot of the sisters' lives together.
I posted it to his office this week, with a short letter suggesting that it might be a useful additional tool when giving his clients unbiased information at point of diagnosis, to allow them to make decisions about how to proceed with their pregnancy. I thought perhaps it might give strength to one family he sees. I hoped its modern day images of a child with Down's syndrome living life to the full, despite the challenges of heart surgery and communication difficulties might speak to the highly respected professional on a more personal level that he might not have had time to consider before.
Of course, I accepted that the reality is perhaps that he would never lay eyes on it. A secretary might flip through its colourful pages, find a lump in her throat and go home with a slightly altered impression of what children with 'chromosomal abnormalities' are like.
A cleaner might empty the waste paper basket that evening and find the book the secretary tossed away nestled there. He might smile to himself as its pages fall open.
The reality however, was that only 4 days after popping our powerful book in the post, I received a lovely email with a personal response from Dr Nicolaides. I was gobsmacked. He is busy, he would surely assume as I was a Mum with a child with Down's syndrome that I was attacking his often unorthodox ways, but no, he found the time to look at our book. Look and respond.
“Dear Hayley, I am very grateful for this gift, this wonderful book by Mia. You should indeed be very proud of both of your children. Certainly this is going to be a useful tool supporting parents to carry a baby with Trisomy 21. Kindest regards, Kypros Nicolaides”.
And there in a nutshell is how we all change the world. We reach out, we treat individual as we find them and we send out love and understanding. We cause tiny ripples that almost go unseen. It's impossible to change the world any other way.
Each ripple reaches another person, who in turn creates another set of ripples. Perhaps one day, if we persist, we might see a wave of difference.
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
That brought a tear to my eye and a lump to my throat… well done, it was a great idea and I hope it helps parents to be to make their decision. I was offered a termination but chose to let nature take its course whatever the outcome and Im so glad I did. My daughter has CFC cant walk or talk and is totally dependant but she is a ray of sunshine and a bottomless well of love in our family. More people should co sider the positives and not just the negatives when making such vital decisions but unfortunately, no one ever presents the positives to them.
Yes, dear Ali, I too try not to judge others, but often find a tear in my eye if I think too deeply about the choice many see as their only option. I wouldn’t have our life any other way, and you are so right that the positive side of disability has to be shared.
Hayley, as my 9 year old son would say… “you rock”
So often we are busy but feel like we are achieving nothing, except for a headache. We sit and wonder “why do I bother?”
Your post has given me the “oomph” (or as my 9 year old would say “the kick up the bottom”) I needed to get back to it.
I know that feeling well Debs. Rushing, promising too much, deadlines. But then a moment of surprise that makes it all seem worthwhile. We motivate each other and that’s what teams are for. H x