Special Needs Round-up: Celebrating change

special needs blog posts sliderWelcome to the new look, jazzed up, easier to navigate Britmums site. You might notice we’ve renamed this Round-up, calling it Special Needs rather than SEN as that seemed to widen the umbrella a little.

I find myself simply run off my feet at this time of year with so many wonderfully exciting projects, all diverse in nature and all designed to celebrate, create awareness or bring about change. There was a speech in Parliament, a naked photo shoot, some blog award judging, a book launch and a gathering of lots of little models with Down’s Syndrome. It seems the rest of you are doing the same, with many award ceremonies on the horizon, awareness days being creatively marked and others ploughing forward in great strides, bringing about positive change.

SWAN UK are launching their first blog awards this year to bring together all the parents blogging about their children with a Syndrome Without a Name and raise awareness so that they do not feel isolated. I am hugely honoured to have been asked to sit on the panel of judges, alongside Renata Blower, Chris Barnes and Annie Spratt. If you write or read a blog that you would like to celebrate please visit SWAN UK here.

Renata B has put together the most captivating vlog A Very Special Story for feeding tube a wareness week, showing how tube feeding saved her son Dom’s life, and how it has become a part of who he is. I had a tear watching this, recalling hating seeing the tube taped to Natty’s face in the early months, and the desperate pain of learning to insert it into my precious baby’s nose.

Abstract Lucas challenges us all to see the child behind the immediately obvious health issues. I for one was left smiling from ear to ear from the infectiously positive photos in this blog post: What Do You See?

Alice Arnold who writes More Than Toast has not been ready to talk about her daughter’s health issues until now in CAH and Elfie. She not just talking, she’s running too. Go Alice Go!

The Home of Pinkoddy has produced a concise and practical piece giving advice on Trying to do The Best for Your Child (DLA). She also points out why we shouldn’t feel guilty about claiming this benefit and how to go about it.

I, Downs Side Up, have just returned from a trip to Parliament to speak on the emotive subject of Disability Abortion Law, Group E. It’s a subject I knew little about until I started researching, but the law currently allows abortion to and including during birth for babies with (undefined) ‘serious handicap’. Read what I said to the MPs here in Evidence by Downs Side Up in Parliamentary Inquiry.

Matilda Mae was a beautiful, healthy little 9 month old, full of spitit and love. She passed away suddenly, leaving her parents in numb grief. Wonderfully, her mother  Jennie, who blogs at Edspire, is celebrating her beautiful short life with writing. You are in our thoughts all the time and I so wish we could do something to take away the pain. Kylie from Not Even A Bag of Sugar  tells us how we can donate to Matilda’s fund here in Matilda Mae: A Precious Star.

MamaK, Helen Kingdon, has written a clever, witty and oh so true account of what happens when we hear our baby has a disability. She sets out the stages from grief to acceptance in a very approachable way in Diagnosis: Down’s Syndrome over on the Future of Downs blog.

Katie Kitchen of  The Life and Times of Team Kitchen writes Luck, a beautifully crafted poem about how truly lucky we all are to have our incredible children and to be able to watch each of their achievements.

A fairly new blog to me, written by a kindred spirit Sarah Hoss is Living with DS: Here she writes about how a child with a disability alters your social circle, and how some people think your life is public property in My Life’s Nice: How’s Yours?

Finally, something a little more frivolous, Inspired by Kate on Thin Ice who now writes The Naked Mum I agreed to do naked photo shoot to celebrate our wonderful bodies that created our beautiful children, for we mums of those with disabilities don’t have green scales under our clothes. Watch my little video on Downs Side Up telling you all about it here, and how you can donate to our Down’s Syndrome charities, in Downs Side Up Uncovered

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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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One Response to Special Needs Round-up: Celebrating change

  1. Pinkoddy 19 February 2013 at 08:22 #

    A great round up of post, I shall enjoy having a good read. Thank you for the feature.