Special Needs Round-up: Telling our unique life stories

special needs blog posts sliderA story that had the power to divide

Divide in a way that I have never witnessed since becoming a ‘special needs’ Mum seven years ago. One outspoken woman has divided our community and perhaps set back society’s acceptance of our ‘differently abled’ children by decades.

A mother, Gill, went public with her assertions that she wished she had aborted her son with the condition, that she has spent 47 years caring for*. (*The article also asserts that most of his life was spent in a hospital or home). The story was emblazoned across the Mail and found it’s way onto the Loose Women show.

Some might say she was brave to speak about her life story so openly. It is true that 47 years ago there was not very much support or understanding of the condition and families would have been left to fend for themselves. Some felt sorry for her and noticed that she had been under supported as a woman with mental health issues. Others might feel that her encouragement to prospective mothers to think carefully about terminating a baby with Trisomy 21 is part of a larger eugenic movement. For the most part I witnessed feelings ranging from disbelief to upset and downright fury coming from various social media outlets, as families scrabbled to explain just how much their child with a disability or special needs meant to them. And how they wouldn’t change them for the world. It seemed that this woman’s feelings truly were rare.

What hit me hardest was the way her son Stephen was photographed posing with his family, with captions beneath saying that they wished he hadn’t been born as well as describing what he couldn’t do and what a burden he was. Not once was he asked for his opinion. His voice was left unheard.

So what do you think? Regardless of your child’s abilities, medical needs or predictions for their future, how have they changed your life? Is any parent ever right to publicly express a wish that their living breathing offspring were not around? And what about the rights of Stephen, a grown man with thoughts and feelings? Where is his voice in all of this?

I wrote an open letter to a ‘mother like Gill’ here, in Dear Past Generation Mum. With as much grace as I could muster, whilst feeling my heart squeezed till it hurt, I asked her to look to the future and see how times are changing, to reach out to the new generation and see truly how much each individual puts back into every community.

Marcus Sikora, a man with Down’s syndrome and son of Mardra who writes at Grown Ups and Downs had his own opinion of the whole affair. Read his answer here. Be warned, it might make you reach for the tissues, for love is always the answer.

The Ginger Warrior brings another fabulously positive snapshot of life with Down’s syndrome to the table with the latest instalment by her guest blogging niece Beth. Beth has us all reaching for our dancing shoes in this Beth Blogs post, and leaves us with a smile upon our faces.

The rich tapestry of  life stories that inspire

A precious little girl passed away this month. In her short life Margot created real change. She had a rare form of cancer which spurred her parents on to ask us all to swab to see if we are a match. Please watch this film created by Team Margot asking you to become a donor. Our thoughts and prayers are with the family at this heart-breaking time, and we thank them for their strength and determination to make a difference for others.

 

 

Vicky Kuhn attended a star studded Wear it for Autism fashion show hosted by Anna Kennedy OBE, a woman who has worked tirelessly to create a school for students with autism and to raise funds and awareness for countless others with the condition. ‘But this post is all about the clothes’ proclaims Vicky on her blog Around and Upside Down. It certainly looked like the event of the year, and was supported by the amazing Models of Diversity who really are an incredible advocacy group for inclusive advertising, a campaign very close to my heart.

And finally, a man with more sci fi costumes and high tech cameras and gadgetry that anyone could believe reasonable, my good online friend Daniel Baker. Daniel has Duchenne Muscular Dystrophy, but he is just a thoughtful, hilarious, keen-listening ‘geek’ to me. Read what happened when he attended a Star trek convention recently, in Another Comic Con.

Do add your unique life stories to the linky below, and some will feature next month.



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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.

3 Comments

  1. 18 November 2014 / 11:09

    Wonderful round-up…I’m going to do lots of reading now!
    I’m in the process of applying to become a Family Link carer working with children with learning disabilities. I don’t have any hands-on experience in this area, so I’m also putting myself forwards for voluntary opportunities in my local area…one is with in-2-biking which uses specially adapted bicycles to give children with disabilities the opportunity to get out 7 about on a bike!
    I’m really looking forward to it and I will continue to read your round-ups so that I can gain more insight into SEN 🙂

    • 26 November 2014 / 13:36

      In-2-biiking sounds like a brilliant project Pouch. I wish you luck with the job and hope you enjoy reading around the SEN posts here.

  2. 28 November 2014 / 19:40

    I have never ever felt like I wished I hadn’t had my SEN daughter, and I honestly don’t think this Mum really meant that deep down, she has just not been able to find better words to describe here difficult journey. No-one said parenting was easy. Am not defending her in any way though; I swing from being incredulous to feeling pity for her. A tough week xx