Special Needs Round-up: Tricky taboos and this is me

special needs blog posts sliderThere must be something in the crisp Autumn air that is stimulating your writing muscles, because there’s a veritable plethora of original and beautifully crafted writing out there at the moment for me to simply pluck and tuck into November’s selection for you. Thank you too to all of you who linked up to last month’s round-up.


Tricky Taboos

Sometimes the true essence of blogging is to tell it how it is, to address a difficult and often painful subject and to encourage others to tear down taboos and break their worried silence on a similar topic. This can be a fine line to tread but this cluster of bloggers have managed to open up some crucial debates for us all this month.

Its Smalls World talks frankly and honestly about all the emotions mixed up in writing a Will when you have a child with a disability. It struck home as we have been having the same ongoing discussions for about a year and I have to admit that when it gets too upsetting we simply put the paper work away and procrastinate a little bit longer.  It’s not as simple as just writing the children’s names in the will and passing your estate on. Read Some Very Grown Up Conversations here.

Katie at Life Through the Wrong end of the Telescope writes about the upsetting habit of staring, only this time it was her child doing it. Understandable, but when you know how much it hurts as a parent, how do you deal with it? When Staring is Caring.

And for me there was a realisation this month that not all parent carers are necessarily always on the same side, which came as a shock. Katie Price’s comments that there is plenty of help out there for children with additional needs but that some parents are too ‘lazy or ignorant’ to know where to apply for it stung. Many of you joined my Downs Side Up linky Are You A Lazy, Ignorant Carer Katie Price? with beautifully crafted posts detailing the hoops to jump through, the letter writing, the meetings, the fundraising that carers do to give their children the support they deserve.

Abstract Lucus wrote a supremely touching post on a subject that flits across the hearts of every SEN parent from time to time. It’s a post of What If’s. What if the worst should happen to your child…

“Dear Olivia, Today marks the 5 year anniversary of your death. Anniversary sounds so wrong. It’s meant to be the celebration of something. But I don’t celebrate your death, how could I when the missing of you have left my heart beating to a broken beat.”  A snippet taken from Dear Olivia – 5 Years Too Long xxx Please go and support the incredible Sara who writes at Walking with Angels. It is an unimaginably difficult time for her and her family right now, but they carry on with their work to make life better for others with Rett Syndrome.

This is Me 

This section is chock full of inspirational blogs by those with a disability, their siblings, a young man with a contract for his doctors and a couple of nice media stories this month.

Sarah is a quilt designer and has her own business called Down Right Charming. Read about her fundraising efforts as well well as her creative achievements here in Not Even the Sky is the Limit.

Max Lockwood writes Living Life to the Max and has been busy creating some excellent films of late. One about the Bridging the Gap work placement scheme where he worked at a TV station, and one about the vitally important issue of Cyber Bullying. You can see the clips here on the HDSSG website in Max’s Media Experience.

Holly Greenhow is the latest gorgeous little model with a disability to hit the headlines, making strides for adinclusion. Holly has Cerebral Palsy and has done a shoot for Mini Boden. Read about her and her family in Same Difference.

Agnieszka Productions is where another amazing young lady, the 10 year old sibling of a little girl with Down’s syndrome makes beautiful and fun films about their life. She has just been announced as the winner of the Ones to Watch category of the National Youth Film Festival. We are so very proud of you Agi!

Finally, and one of my favourite posts of the month for it’s unique and utterly genius slant on the very difficult challenge of how to treat a SWAN on a long-term stay in GOSH, is a post about how little yet mighty Dominic Blower is taking on his medical team and voicing his say about how he his treatment should progress. In true Just Bring The Chocolate style, Renata brings a touch of humour to difficult challenges in Taking Control: when a small child finds a big voice.

If you have a post that is relevant to any of the topics mentioned here, or that you would like to see shared next month, please do link it at the bottom of this post.

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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.

1 Comment

  1. 17 November 2013 / 10:35

    Thanks for the mention Hayley (: Btw I’m 11 now ! 😉