What's on your bedside table?



What are you reading, trying to read, promising to read or wanting to re-read with eyes afresh?

What are you dipping into from time to time, or are so engrossed in you can't put it down?

Are you a Kindle or a paperback person?

Here's what's piled up on my bedside table, my Downs Side Up reading list if you like...



A Minor Adjustment - Andy Merriman
A book that changed my thinking on parenting a child with Down's syndrome when Natty was a baby. Humour and tears all roll into one. Read my interview with Andy here. I now want to read the book again, 7 years on, to see if my thinking has shifted.

Mongol - Uuganaa Ramsay
A book that paints a beautiful picture of life in Mongolia, and more crucially challenges our thinking of the word Mongol, and how it came to be used as an insult. You can purchase from Uuganaa's website Mongol Memoires.

Wonder - R J Palacio
The award-winning story of the world through the eyes of a young man with a facial disfigurement.

Sworn Secret - Amanda Jennings
I first met Amanda on a beautiful beach many miles from here... she is now a Twitter friend and very generous supporter of Down's syndrome charities. Her debut novel has been a smash hit! Give it a whirl, it's my treat when I want to escape all things SEN.

Standing Up For James - Jane Raca
Jane is another amazing woman. We met at a Mencap reception at No.10 (like you do). A campaigner, legal expert and author, writing about her fight for her son James who suffered brain damage at birth. Visit her site Standing Up for James here.

With a Little Help from my Friends - Michelle Daly
Michelle began helping to care for Marie, a 5 year old with complex disabilities when she was but a teenager herself. She went on to become the UK's youngest single woman to obtain legal guardianship. This is their incredible tale. Visit Michelle's inspiring blog Warrior Mums here.

All About US! - Brian Rix
Thank you Lloyd for sending me this fascinating history of learning disability and the origins of Mencap.


Pop over to our Pinterest board for more inspiration for 
Down's syndrome and special needs books. 


Lose the Label campaign for Person First Language


The poster says it all. 

I am Natty: a little girl first and foremost, with my own unique take on life. 

Yes, I have Down's syndrome, it's an important part of who I am, but it does not define or limit me.

I am not 'a Down's'.

I am Natty.




A few months ago I came across the Lose the Label poster campaign on Facebook (do pop over and join the growing community there), run by the lovely Michelle Clark. It is genius in it's simplicity. She features a wide range portraits of children, babies and young adults all living life to the full, all who have Trisomy 21. In 3 simple phrases she cuts to the heart of what we all strive for for our young people, that they must be taken for who they are, unique individuals as different as snowflakes, and she makes people stop and think about the generalisations and stereotypes they may have believed to be true of those with the condition before. I knew straight away that I wanted to be involved, as Michelle shared my approach to change. Here's why:



"Within hours of Natty’s birth we received the diagnosis that she has Down’s syndrome and a heart condition.  I’m sure many of you reading can relate to the crushing disbelief, the angry grief, the gut-punching shock, the darkest of fears that makes it hard to even simply breathe in and out.

When I look back at that snapshot in time, I understand how, rather than seeing Natalia for exactly what she was, a beautiful yet vulnerable baby, our precious second born daughter, a little sister for Mia, she became in our minds a set of medical complications, a set of symptoms, and worse still, a collection of preconceived stereotypes based on the fleeting glimpses into the lives of adults with Down’s syndrome I had seen in my youth. Our baby became in that moment, Down’s syndrome personified. A one-size-fits-all label.

Looking back with shame, from my privileged current vantage point of knowledge and love, I understand that in many ways this is how society and the medical profession had presented Natalia to me. My own fear and ignorance fed into the myths, but it was my husband who broke through all the labels, simply saying, “She is our daughter, and she will be the very best that she can be.”

Now, 7 years down the line, and Natalia refusing to conform to one single stereotype that had entered my mind that day, I pour as much energy as I can muster into telling the world that our children and young people are all unique individuals with fully rounded personalities who deserve the same rights and opportunities as everyone else. I shout from the rooftops that they take on the values and traits of their own family members and contribute much to the communities around them. Not just ‘cute’ or ‘musical’ or ‘loving’, their voices must be counted. I know now just how wrong I was and I want the truth exposed.

When I came across the inspired work of Lose the Label, I knew immediately that it was something I wanted to be a part of. For together, if we can remove the fear from the hearts of just one new set of parents, to buy them bonding time with their newborn it is worth it. Or if we can shift the thinking of one member of society that will lead them to be more inclusive, then we have improved the life of someone somewhere with Down’s syndrome. And if we can make people stop and think before they label our children, then we have removed one more barrier before them."





If you have a photograph of your child with Down's syndrome that you would like to submit to be included in the campaign, you can write to Michelle via her Lose the Label Facebook page
Images must be high resolution, good quality, landscape and have space for text to one side. 


You might like to read Musical and Loving Aren't They? on the subject of stereotypes and labelling. 



Heart and Sold: Artists with Down's Syndrome

I chatted to Suzie Moffat recently, the curator of a wonderful art project that showcases the work of art by artists with Down's syndrome.


Heart & Sold has been exhibiting at The Royal Exchange Theatre, Manchester and is receiving fantastic coverage.  

For those of you who don’t know, Heart & Sold is a thought provoking exhibition exploring artworks created with much love and passion, the exhibition hopes to communicate a heartfelt message and make a difference to people's lives. All of the artworks on display are produced by extremely talented artists, all of whom have Down syndrome.

Little Red Riding Hood: A hero with Down syndrome

ONCE UPON A TIME...

in a quiet clearing in a faraway wood, there lived a wise, brave and beautiful young lady named Natalia. Because of her fondness for dressing in a velvet cape of crimson rose, and a frock adorned with pictures of her favourite woodland friends, she became known by all who loved her as Little Red Riding Hood.

Little Red Riding Hood had fought valiantly to become strong, overcoming battles of health and development with a smile. And each day she worked as hard as she could to learn the skills she needed to go out into the big wide world by herself, and each day she drew others in with her humour and vivacious spirit, so that she could teach them all about her inclusive community, her determined family, her zest for life and her famous way of turning Big Bad Wolves into the gentlest of puppies.




Have your say to change legal rights in SEN Bill: Join Jane Raca's campaign

"We define ourselves as a society by the priorities we choose."


Copyright Jane Raca


Last year I had the very great priviledge of meeting Jane Raca at a Mencap reception at No.10. Mum, legal eagle and author of Standing Up for James she is a force to be reckoned with in the world of disability and SEN.


Jane is now calling on parents and carers of children and young people with SEN/Disabilities to join her campaign to make the government stop the rush through parliament of the Children and Families Bill in its present form because its provisions are woefully inadequate.

Natty gets a very special invitation...

... from the Queen Lord Mayor of London. (We've explained her as 'like the Queen'.)


The Lord Mayor of London is hosting a fancy dress party for 200 children who have made a difference. I guess Natty is unaware of the exact difference she has made to others, either by being part of inclusive advertising as a model with Down's syndrome, or by being a protagonist in the ordinary story that is our family and parenting blog so that new and prospective parents can reassess their understanding of what Trisomy 21 really means in modern times.

Downs Side Up's Ups and Downs in 2013: A Linky for 2014

Time to take stock

January is the time I like to spring clean my blog a little, cut the deadwood and look at it afresh after a Christmas break. It's easy to feel you haven't achieved a lot in a year, that you are stuck in a writing rut, but now's the time to look at even the smallest of steps forward, celebrate your achievements and motivate yourself for the year ahead.
Here's a taste of where Downs Side Up, our Down's syndrome support blog, has taken us this year.
I'd love to invite you to join the linky below with either your favourite post of the year or a summary of where your SEN blog has taken you or your cause, or simply a post about where you are heading in 2014. Please take time to visit and support others who link too, with lovely comments, that's how we draw our community closer.



January 

The year kicked off with a very exciting get-together of all the UK models with Down's syndrome that we could find, doing their bit for #adinclusion. Natty, Seb, Jojo, M&S, Next, Co-Op, Boden and more. We met at the Down's Syndrome Association head quarters incredible Normansfield Theatre. A place filled with the memories and the energies of those with Down's syndrome who had lived and acted there when John Langdon Down first detailed the condition, caused by an additional 21st chromosome. How far he pushed forward, but how much further our children can travel today, the world their oyster...




Looking rather 'Natty' in her new specs

It really was time to look for glasses suitable for a child with Down's syndrome. 

Yes, I admit it, I have been putting off getting Natty's first pair of glasses. I wasn't convinced by the initial hospital prescription as he reads well and can see the board at school quite happily.



So we sought a second opinion and, although the prescription is slight, it was felt that Natty's eyes might get less tired if she wore glasses. She'd be able to concentrate more easily at school and will be less tired (and let's face it grumpy) at the tail end of the day.

So, off we trotted, I with outdated views of what NHS glasses looked like back when I was at school and Natty excited about dressing up and trying on a variety of hilarious disguises (I expect).