A Year of Advocacy, Collaboration and Inclusion


What have we achieved? What have we learned?

The highs, the lows, the collaborations and challenges that made, or nearly broke us. 

Where will the next year take us? 
Who knows. But here are just a few of the moments from 2014 that have shaped our campaigning and advocacy.



The highs and lows of 2014 for Downs Side Up




As a family it's been a good year. Not too many ills, no hospital stays. Lots of fun, a holiday. Natty has grown, learnt to swim, and riding a tag-o-long bike. 

Mia has florished into a jazz pianist and a book worm. Fracturing her fingers in a rollerskate incidient was probably her lowest low, but all will be well.

Aside from the typical daily routine, the ordinary family life, our personal goals and achievements, it's nice to look at Downs Side Up's journey. I so often feel we are getting no-where, lacking focus. It pays to remind ourself, and reset the course.

Our book of sibling support, I Love You Natty, the seeds of which grew from Mia's imagination, a sister's love was published. It felt like watching a child flee the nest when it was launched. But we had to focus on it's purpose, the families we needed to support through the early days, and so we took a deep breath and went on. Seven months on and we are very pleased to have donated around 200 copies and sold a further 600. We've covered our costs, and will hopefully be able to fund a further print run this year.

Writing for others has taken over too. I wish I could write all the articles I am approached to do, I wish I could time travel to all the venues I'd like to attend to listen, to learn, to speak. But I can't. This year has been about learning to say no. A little bout of burnout taught me that harsh lesson. But I am enormously proud to now be a regular Special Needs Jungle columnist, a Huffington Post Blogger and a Wauwaa contributor, as well as having my first paper published in a medical journal and several parenting and medical magazines.

Then of course another subject close to my heart is inclusive advertising. There is a quite a worldwide team of models growing now, using hashtags such as #adinclusion and #imready. I do feel we are getting there, but still Natty's appearance as a face in the Sainsbury's Back to School campaign this Summer did make national news.

Media highs have included being tipped by the Financial Times as a 'blog to watch', a fabulous Telegraph article There Are No Limits to What Natty Can Achieve and appearing live on the ITV Lorraine Show. An invite to a fancy dress party at the Lord Mayor of London's pad was fun for Little Red Riding Natty too. Being named as a Britmums and a MADs Outstanding Contribution blog was the pinnacle of my writing so far for me. 

Our community astonished us all back in March, when together we raised an incredible £6300 on social media for World Down Syndrome Day #WDSD2014. No-one could have imagined that a few selfies and some colourful socks could have produced such an amount.

There have been lows, almost unspeakable lows. Trolls occasionally pop out of the woodwork but I have learnt not to read their poison. Then the unimaginable hurt caused by bigoted dinosaurs such as Richard Dawkins spouting nonsense about us having a duty to abort babies with Down's Syndrome to end their suffering. 

But always the most hurtful, the least expected emotional jolts, come from within the disability world itself. A jealous bullying blogger, or a Mum who publicly declares she wishes she had aborted her child with Down's Syndrome, cause more sleepless nights than all the rest put together. But we grow wiser and less naive with each incident. We dig deep into our soul for the answers. We step in their shoes and we walk on stronger.

So, 2015 come here, let's be having you.
You began by flabbergasting me. I am rarely dumbfounded, so to have been listed as one of 25 #HSJRisingStars by the Health Service Journal for contributing to the changing face of the NHS, makes me incredibly proud. To stand alongside the medical professionals who work tirelessly for us all is very humbling. The ultimate accolade.

What next? 
Another publication I hope, a royal tea party, dinner with a racing car driver and lots and lots more collaboration, inclusion, education, fundraising and support. 

Here's to #TeamT21 for the year ahead.




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