Special Needs Round-up: Close, closer, closest

The days are cooler, the evenings earlier. The sweaters are out, the heating is on and I for one am finding it a little easier to find excuses to snuggle up with a cuppa and do a bit more writing than in previous months. Judging by the incredibly high standard of blog posts out there this Autumn, many of you are feeling similarly inspired.

This month’s round-up posts sat on my white board, queueing up one by one as I found them over the last weeks. They jostled and postured until finally they shouted out the order that they wanted to be presented in. There were those written by educational, charitable or medical professionals. The people who form a close saftey net around us. Others were written by family members or friends, those even closer to home. And then there was a cluster written by parents, the closest form of support possible. Close, Closer, Closest was created. So hunker down, grab a warm beverage and have a browse. I think there’s something for everyone here.

Close

Lottie Stokes works as a Learning Support Assistant in a Primary school. She writes her own incredible blog, packed to the gunnels with teaching ideas for those working with children with additional needs. Here you will find teaching materials you have never seen before, as well as novel uses for iPad apps, and variety of software. In one of her latest posts, she tells of her dispair at the lack of an iPad app for Clicker 6. Find out how she jolly well made it work herself, using Doceri in Clicker 6 – The iPad Route. This will be useful for parents and educators alike. Oh, and watch this space, because Lottie is going to be doing some research shortly and she might want to enlist your help…

Kat Williams is a trainee journalist doing an MA in media. She has produced a wonderfully informative film, featuring parents and children with SWAM, a Syndrome Without a Name. Watch her Documentary: Without a Diagnosis to understand how these parents fight for support as they try to understand their child’s undiagnosed genetic condition.

BILD is The British Institute of Learning Disabilities.  They play a vital role in making sure people with Learning Disabilities are supported with dignity and respect and can make choices and decisions about their lives via training, support and research. They have been around for 40 years and are en extremely well respected body of people. It was with great pride and honour that I was asked to present a keynote speech at their Conference: Touch Times Call for Innovation and Inspiration last week. Here is a post detailing my experiences at that event and providing links to the organisation for those of you that are interested in finding out more about what they do

Closer

This next post made my heart skip a beat when I discovered it the other week. The reason being it’s author  is an almost identical version of my eldest daughter Mia, just 2 years down the line. A beautiful, wise-eyed soul, who loves ponies, fun with friends, and her younger sister with Down’s Syndrome, not necessarily in that order. Agnieszska Productions by Agnieszska Kolaczinska (Even the surname mirrors ours) is written by a wise-beyond-her-years soul, a sibling of a child with a learning disability, who writes passionately and sensitively about life, and sometimes about Down’s Syndrome too. Her post Central Wales Downs Syndrome Support Summer Barbecue is typical of many other gems.

Mia wrote a little note of love in a scrapbook this week for her sister Natty. For anyone worried about the negative impact of a child with a disability on siblings, read From One Sister to Another – From the Heart  over on my blog Downs Side Up.

Closest

Just Bring The Chocolate by Renata Blower is one of the first blogs that I ever read nearly a year ago. She is the most inspirational, beautiful writer who always maintains an air of positivity and grace whatever is going on in little Dom’s life. Dom has SWAN (Syndrome Without a Name). This month he turned 6 and Renata has produced an utterly compelling little video to celebrate the occasion. Please do watch Making Wishes, Turning 6, and Why I Don’t Want to Hang out with You

Sheonad who writes the wonderful Touch and Tickle and raises awareness of SMA (Spinal Muscular Distrophy) has also been thinking about siblings this month. As a parent it can be hard to see a a brother or sister feeling responsible and shouldering worries about a family member with a disability. My Glass Child  resonated with me on so many levels. A simply beautiful and accurately observed piece.

Nearly Everything But The Kitchen Sink is a new find for me, written by a young single Mum of a 28 week preemie ‘Wriggle’. She has also fought depression. Her blog is wonderfully positive and encouraging, but this week I adored her honestly and ability to vent her fears and frustrations in Not Fair. We all have times like this.

Please do add your blog, or one you are reading, to the Linky at the bottom of the page.

I hope you enjoy what I’ve found for you this month and in particlular that you find something new to inspire you on your journey.

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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