Special Needs Round-up: no substitute for meeting face to face

The online community we are all a part of as bloggers is incredible.

We share, support, advise, pull together, collaborate. We motivate each other, pull each other up and drive one another forward. And those in the special needs community feel this even more so, there is always someone who has stepped in your shoes before you, always someone to answer a tweet at 2am when you are awake in a hospital camp bed, always a network to help spread the word about your latest fundraiser. Or just a friend whose life mirrors yours, is there to listen.

I sometimes wonder what on earth we did before we were part of a global digital family. Was life simpler or were parents like us more isolated, alone and desperate for information? Either way,  this month I have been reminded in the most wonderful way possible of the warm importance of actually meeting face to face, of finding the person behind the avatar, of sharing a smile, a hug a coffee or even a glass of wine.

I was honoured to have met an array of  SEN bloggers at the gorgeous Brewery venue in London for BritMums Live 2014 and however long we all managed to make the most of the time we spent with each other, from a few minutes at the the juice counter or a hug after listening to an emotional keynote, to a shared meal or a ‘pyjama party’. I came home from the event with the buzzwords COLLABORATION, INSPIRATION, FOCUS, SHARING, POWER and CHANGE ringing in my ears.

Just a handful of those who made an deep impression on me this year

were Camila Batmanghelidjh who is the founder of the London charity Kids Company providing refuge for seriously traumatised children. Watch her vlog Women Leading the Way here to find out more about the brave and vital work she does to support the most desperate of Britain’s children. I never never met a more calm yet powerful force. In her own words, “I am acutely aware of my insignificance, but what I do is significant.” Hers is a charity we should all support.

It was fabulous to meet the calm, considered Amy Dunn who writes A Different View, and the flamboyant Alice Hassell author of blog My Son My Life My Way has who has written a moving post of the Britmums Live events, both incredible Down’s Syndrome bloggers.

The beautiful Vicky Kuhn, researcher into disability in advertising and blogger at Around and Upside Down and her husband who braved the sea of women to get a weekend away with her. Read her guest post The Language of Fashion about inclusive advertising for all here.

Darling Orli Just Breathe, such a soulful face, such a beautiful blog, the kind of person you feel sure you have met before. A blogger who stood out from the crowd for me.

Steph from Steph’s Two Girls who made us dress in ridiculous props for a ‘holiday snap’. Yes, silly and frivolous, but life can be challenging enough. We need the laughs too. Please read her incredible post about the feelings behind the tears at her daughter’s school leaving ceremony. There’s a bit of us all in Brilliant but Different.

Renata from Just Bring the Chocolate made me laugh and cry and think in equal measure and I am grateful to have spent so much time with such an incredible woman. And sometimes SEN parenting is about popping the teensy bottle of champagne in the mini bar at midnight when you really are too tired but need that little bit of extra ooomph to put the world to rights. Her post to all the Fathers of Special Needs Children is a must read, an absolutely beautiful and spot on description of those who seldom make it to the medical appointments, visit in hospital with the siblings unusually dressed in tow, but love and care and worry just as deeply as the mums.

Thank you too to the delightful, funny cheeky Kara from Innocent Charmer, she and her blog are testament to the fact that we are all so much more than our caring roles or our own disabilities. We are joke tellers, raconteurs, expert model makers, knockers-up of fancy dress costumes, we are insecure, over-confident, we are partners who need a hug, zumba dancers in our kitchen, chocoholics and more.

BritMums Live enables me year on year, to remember who I am as a woman. Sometimes I come home questioning my direction. But that is no bad thing.

Working together

To all the wonderful writers I have missed out, I apologise, and to those I was desperate to meet but failed in the mix, there’s always next year. But to all of you, thank you for the inspiration.

Please add your SEN blogs or articles that have made a deep impression on you to the linky below, to be included in next month’s round-up.

Go, get your Britmums Live 2015 earlybird tickets here now!

About Hayley Goleniowska

A former language teacher and voice-over artist, Hayley is now the Mum of two gorgeous girls, the youngest of whom, Natty, has Down’s Syndrome. She blogs, speaks and writes articles on the subject for all who will read or listen. Through Downs Side Up she aims to both offer support and encouragement to new families with a diagnosis, and gently change perceptions of Down’s Syndrome from within hearts through beautiful words and photos. Her daughter Natty is a clothing model and an amazing ambassador for children with disabilities everywhere. She has appeared in The Sun, Mail Online, Bella Magazine and on ITV Daybreak. You can find Hayley on Twitter, Facebook and Pinterest.

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