Special Needs Round-up: The highs and the whys

Thank you all for supporting me last month, my first as Special Needs round-up editor. Back then, oh so long ago, I was nervous about actually finding enough blogs to fill the post. A month on and I am in an altogether different position – I’m an old hand, my SEN hat is firmly jammed on, I have a special bookmark folder on my pc, and every time I find an inspirational new blog it gets popped in there. Suddenly the folder is bulging. Suddenly I have an overflow. Forgive me if you have been missed out but I am already looking ahead to next month.

Last month I categorised the blogs into Old, New, Borrowed and True if you recall. I waited until the last minute to see how they wanted to divide themselves this month, not sure if it would be the same again. At the 11th hour, when I looked at them all scrawled over my whiteboard (did I mention I had bought a special Britmums whiteboard?), and thought about my own journey as a blogger this month, they jumped out at me into two distinct groups: Those that made me feel good, beautiful uncomplicated tales of happy times that made my heart soar – the Highs. And those that made me weep, want to strengthen and further my crusade to change the world for families with children with disabilities and additional needs everywhere – the Whys?

The Highs

I begin with my own high point of the month over at Downs Side Up which sent me dashing to my Mac with tears in my eyes, the kind of blog post that is written in 20 minutes because the emotion is so crystal clear. This is the moment that Natty said I Love You for the first time. Those are the words every parent wants to hear, but many of us wait many years and indeed may never get to hear them at all.

We’ve all been thinking about education this month with the start of the new academic year. Many wonderful posts have been written about children starting school and nursery for the first time, full of hope and dreams. Has Nursery Done That? is a lovely little post about a mother’s delight as she notices a leap in her son’s development as he starts in a new establishment. Follow Wendy’s blog about life with 4 children, 3 of whom have Autism here at Savette Gazette.

I stumbled on another wonderful education blog by a lady called Ross who writes Ross Mountney’s Notebook which I found hugely useful because she home educated her children and we have just begun doing this for one day a week with Natty. Ross’ heartfelt post A Sense of Something Missing tells the tale at the other end of the home ed journey, as she launches her daughter into universtity education with immense pride despite missing her terribly. She reminds us to enjoy and relish each moment with our children.

Of course the Paralympics have been one of the biggest highs of the year for many of us. They have inspired and motivated and put the subject of disability very much in the public domain. This blog post by BBC’s OUCH radio show, tells of the adventures a groups of youngsters with Special Needs from St Luke’s School as they head off on a school trip to watch the athletes; The Logistics of Taking 90 Special Needs Kids to the Paralympics.

We love photography in our house and many children with SEN, Natty included, are visual learners, so photographs provide not just memories but visual prompts for discussion. Deb at Aspie in the Family explains this beautifully for us as she shares her son’s fabulous photos in Capturing those Special Interests, taken in his way, from his perspective. I think we should all let our children loose with a camera and see what they come up with…

The pinnacle of my blogging search this week was getting to know the works of Max, an 18 year old man who has Down’s Syndrome and writes about his life over at I’m Max Lockwood. In his latest post Sorry I Been So Busy he excuses his lack of recent blog posts with his hectic schedule of work, holidays and a social life I could never imagine keeping up with! Thank you Max.

The Whys?

But as well as being an incredibly positive and inspirational month in the world of disability and SEN, there have been many dark tales in the media that have left me feeling impotent against the tide of prejudice, fear and mistreatment of our children. I wrote A Mosquito in the Room to explain my feelings about these injustices, and to try to rally myself and the many other disability and SEN campaigners and ambassadors out there. For if you ever feel too small to be making a difference, just remember what it feel like to spend a night in a room with a mosquito. Here is gather together the posts that have reminded me why we do what we do for our SEN children…

One of the difficult subjects up for discussion is the early ante-natal blood test for Down’s Syndrome. With the termination rate already at 92% many feel that this will only increase the percentage, and with articles praising the envisaged ‘eradication’ of babies with Down’s Syndrome, many of us have been pouring our thoughts out in blogland. None has done this more eloquently and with more knowledge than nurse and Mum of a little one with Down’s Syndrome, Olivia Nixon, who wrote A Mother’s Plea to the NHS. This is not a full time blog, but, in her words, a one off. What a brilliant one off, thank you. I for one have circulated this article many times.

Over at the Special Needs Jungle, Tania Tirraoro gives us practical advice as ever, a staple read for any SEN parent. I particularly like her posts keeping us abreast of developments in the New Draft SEN Reform Bill. Let’s all have our say and make sure this government does the right thing by our children.

Someone else who expressed life as a rollercoaster when you have a child with a disability was Katie, over at The Life and Times of Team Kitchen. In her post Enough she honestly expresses just how tired she is, both physically and mentally as she takes the helm with her son, who has Joubert Syndrome, while Daddy is away. It’s so healthy for carers to acknowledge and rant about the down days, even when they optimistically look forward to ‘tomorrow as another day’.

Two bloggers that I have great respect for both happened to write about their experiences of how the public view disability this week. The first is the wife of a man who happens to have a disability. Kylie writes Prejudice and Having a Husband with a Disability over at Not Even a Bag of Sugar with such depth of emotion that it brought tears to my eyes. She tries to make sense of why the world fears what they first see in her husband versus what she first saw in him (I think a cute bottom was mentioned!). I’m sure you will be able to relate to what she is saying as well.

Mari of Mari’s World is not a SEN blogger, but this week she has written a thoughtful and touching post, firstly outlining her personal experience of meeting a family with children with complex physical and cognitive disabilities. Like many she wonders how Mums do it. I’d simply say you just do, after all none of us knows how strong we are until we have to be. Secondly she expresses her disgust on learning that there are people out there who find it necessary to go out of their way to hurt the parents of disabled children with their ignorant remarks. Such bigots are personified by the ‘old bag on the boat’ in What’s it Like to Be the Mum of a Special Needs Child?

I hope you enjoy grabbing a coffee and sitting down to read some of these posts, and do remember to share your fab SEN blog ideas with me on Twitter or on the linky below.

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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