'So Good I've Read it Twice', Mia reviews Sister, Sister

It's Summer, (apparently).

The school holidays are here and there isn't a moment to breathe. Blogging takes a back seat and reviews are bottom of the list of priorities. But one request stood out. Would we like to read a book? 

"If it was out of 5 stars, I'd give it 5 stars. 
It's so good I've read it twice!"

A book called Sister, Sister. A book for tweens, where one sister has an illness and the other has to decide if she can save her life by donating bone marrow.

Mia reviews Sister, Sister by Jess Bright. "So good I've read it twice."

Meg's Marvellous Dressage Success

Megan Wilcox is an RDA and para dressage rider with her sights set high. From Harrogate, she and pony Dunkie are aiming for the special and 'real' Olympics, and it's looks as if they are well on their way.

Megan agreed to share her story with us, and this is what she wrote about her pony and her riding career. We can't wait to follow her progress.


Megan and Dunkie are set for dressage success

My name is Meg and I have Downs Syndrome but that doesn't stop me being amazing. 

I have recently qualified for the Disabled Association National Championship for dressage.

Caroline Playle Reviews Resource for New Parents: Down's Syndrome


Review of Talking About Downs Syndrome Cards

unnamedI’m excited to share this lovely review with you all of Hayley Goleniowska’s Talking About Down’s Syndrome Conversations for New Parents by Caroline Playle.
Caroline Playle is a Mum to three children. One of whom has Down’s Syndrome. When Seb was born she was shocked to be told he had Down’s syndrome. She knew nothing about the condition, aside from outdated assumptions and stereotypes, and was full of unnecessary fear of what the future had in store for her family.
The reality could not be further from that vision. Caroline and her family lead a typical life together, facing the same joys, wonders, challenges and experiences as any family. Caroline started sharing snapshot’s of their lives together to show that Seb is a typical six year old who attends mainstream school, loves reading, football, chips and ice-cream and hates having his hair washed. Caroline shares that her son is a reflection of his family and upbringing, he is not a list of characteristics in a textbook and he is more like their family than anyone else with an extra chromosome 21 . 
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What I love instantly about these new Fink Cards is their simplicity. The bold, confident colours and clear font makes them very approachable.
When I was told my baby had Downs Syndrome I threw myself into researching the condition. It was utterly overwhelming, so much information to take in at the same time as becoming a new parent. These Fink cards are absolutely perfect, they are beautifully concise and the card format means they can be taken in small chunks and you choose when and what feelings you wish to explore as and when you feel ready to take on more information. Plus we all know that talking helps with coming to terms with an out of the blue diagnosis. These cards encourage talking in a really gentle way. I can imagine these being so useful at support groups of parents with new babies, getting to know one another and sharing their experiences.
Best of all these cards are about YOU, YOUR baby and YOUR feelings. They are not telling you what will or will not happen, they are not filling your thoughts with all sorts of scenarios that may never come to fruition and they are not limiting your child or your child’s ability. This for me is the genius part of the idea. These cards allow you to explore your thoughts whilst keeping the focus on you and your child and not anyone else with Down’s syndrome.
My biggest regret when I was told my son had an extra chromosome 21was wrongly seeing him as “Down’s syndrome” instead of seeing him as my son. These cards will go a long way to allowing parents to take on board how they are feeling and where they are heading without the unnecessary fear and pressure of a stereotypical idea of what they might otherwise have thought lay ahead. I have no doubt this resource will go a long way to making sure new parents facing a diagnosis don’t miss out on precious, early moment by fearing an outdated or unknown future.
A really fantastic resource for any new parents faced with a recent diagnosis, their families, and medical and health professionals. I have even found them useful in exploring my own feelings, 7 years down the line!
For more information about Caroline please visit her Blog or find her on Twitter and Facebook.

Resource for New Parents: Talking About Down's Syndrome

School Camp for Children with Special Needs: Our Top Ten Tips


Last week one event made me more highly strung than a Wimbledon player's racket, and when it was all over, the headache, light sensitivity, strange metallic taste and exhaustion of a migraine befell me.


What on earth had made me so stressed? School report? Annual review? Meltdown in the supermarket?

No....   Natty's first school camp! 

Here are our top ten tips to avoid that headache when it's your child's turn.


Natty, who has Down's syndrome, returns happy from her Summer camp

A Poem by Jo Adamson: Would a Blood Test Have Helped

Jo co-owns a fabulous shoe shop in Bristol called Oddsox and is a busy Mum of 3. Big brother Alex is 16, Kitty, pictured below, is 8 (and has Down's syndrome) and Larry is the youngest at 6. 

Jo approached me a little while ago with a heart-felt poem she had written following the launch of the new ante-natal screening test for Down's syndrome. Simply called Would A Blood Test Have Helped, it sums up what many of us feel.



Kitty, 8, is the motivation for Jo's moving poem


Would a blood test have helped

Big Sister Mia Describes What a Learning Disability Is for #LDWeek15


My name is Mia, I’m 11 years old and I have a younger sister called Natty who is 8. Natty and I both love netball and horse riding and singing and baking cakes and watching films. We both have Blue Peter badges. 



Mia from Downs Side Up writes about Learning Disability for #LDWeek15

Natty also has Down’s syndrome, which means she has an extra chromosome in every building brick of her body. I think they look like wonkey Twiglets.

#StC15 and #Britmums Live Here We come!

This is one of those I-really-don't-have-time-to-write-a -post posts, but I feel I need to write a quick update whilst I'm chucking things into a case, packing books into a box, painting nails and honing speeches...



I'm off to Derby tomorrow to the Strengthening the Commitment Conference #StC15, attended by learning disability nurses and lecturers. It's a wonderful opportunity to work together to best support those with a learning disability and their families. I always come home brimming with ideas and enthusiasm from these events and I have been honoured to be one of the speakers. I'll be talking about how the language of the medical professionals has a powerful impact on those they work with: Your Words Count.

You can watch the events and speakers here

From there it's down to London to the annual Britmums Live. It's a wonderful whirlwind of a couple of days. Top bloggers, newbies, journalists and publishers share knowledge and expertise from the nuts and bolts of the technical side to the legal aspects and the ethical ones too. 

I'll be joining others to talk about Support Through Blogging and Digital Activism as well as reading the open letter Dear Richard Dawkins, You Are Wrong at the keynotes. I'm also incredibly astonished that Downs Side Up has been listed in the finals of the Inspire Category in the Brilliance in Blogging Awards for the fourth year running.

So to say I'm a little nervous is an understatement. It will be three exhausting days, but you can change the world a lot in three short days. 

So wish me luck. I can't wait to get home to Cornwall again to celebrate father's day with the children on Sunday. Will keep you posted.

Must dash...

Hayley