What Have I Done to Deserve This? A MADs Honour



Downs Side Up is an 
Outstanding Contribution finalist
'prumbleation' - n 

Def: An inexplicable mixture of bursting pride, 
humbled shock and unswerving determination

e.g. Being a finalist in the MAD Blog Awards for making an Outstanding Contribution has 
filled me with prumbleation



Here I sit and ponder what on earth I have done to deserve to be listed amongst 10 of the UK's most dedicated campaign, support and charity bloggers. 

I'm just a Mum, a parent on a mission, that has found herself at the helm of a ship that cannot be stopped. 



Outstanding Contribution finalist 2013 with Dr Ranj
3 years ago my life changed forever. 
Again.

It irreversibly changed when I became a Mum of course, then again when I became a special needs mum. But 3 years ago our youngest began school and I became a blogger. It happened over night and I could never have possibly envisaged where that blog, that mother ship on a course of its own, would take me.


Until now I have been unsure about writing on the topic of being a 2014 MADs (Mums and Dads) finalist on my blog for fear of sounding like I am blowing my own horn. The event takes place this Friday, and I've been unable to formulate a post until now. 



Chatty Natty on ITV Lorraine Show: The Face of Representation

Did you ever have a moment in your life that was so exciting, so surreal that you weren't sure if you dreamt it up? 

The kind of moment where you are plucked from your ordinary life and sucked into a parallel universe for the briefest of whiles, before being plopped back safe and sound, albeit exhausted and clutching a few souvenirs?

Well, if it weren't for two pink Lorraine clocks in the girls' bedrooms, I would indeed be wondering if I had dreamt up our trip to London to feature live on the ITV Lorraine Show.

We Need to See Disability in Advertising

'It's meeee!' she squealed excitedly as we drove round the roundabout.

We manoeuvred round one more time so that she could get a closer look at the huge banner outside our local supermarket urging us to get organised for the new school term. This time we all squealed. 'It's yoooou!'

A third lap. Just for luck. Just to be sure our eyes could be believed, smiles stretched across every face in the car.



2014-08-20-14897_895124300515958_5865978186038347800_n.jpgI fell silent as I fought back a tear or two, my heart swollen with pride as I allowed the true significance of what I had just seen to sink in. This was so much more than a Mum seeing her child's face on banners outside every Sainsbury's in the land. For Natty has Down's syndrome and this is the first time that a child with any kind of disability, physical or intellectual has featured in a major Back to School advertising campaign. For me the posters might as well have shouted:

• All children have a right to quality education and the skills to enable them to lead full independent lives. 
• All children have their own unique personalities and our classrooms benefit from that eclectic mix. 
• All children, regardless of their abilities or disabilities, love a shiny new school uniform!

Pulling Together for Team T21: a Linky

What a month it has been for us all... 

Team T21 pull together in the face of adversity

First the shocking Gammy story that deepened and darkened the more facts were unearthed.

A Frugi twit twoo treat for Mia


'I hope we get some snow 
to try it out in this Winter."
Mia G

Our dear friends at Frugi, wonderful ethical organic clothiers, who Natty first modelled for, have sent this glorious coat as a gift for our big girl Mia. She really deserves a treat after publishing her first book this Summer and for being an amazing big sister.

Mia models her new Frugi AW14 coat

Tips and Contacts for School Pupils with Down's Syndrome

It's that time of year when many of you are preparing your little ones to start back at school or for the first time.

Tips for school pupils with Down's syndrome



I think back to the time Natty came to the end of her pre-school years and remember the stress and worry, the form filling and meetings, all mixed together with pride that she was making this huge step. I remember a lot of tears and late nights and the invaluable support of many professionals.

Whether your child is starting at mainstream or special school, you will want to get through this process as smoothly as possible to ensure the right package of support for your child.
So here are a few tips and ideas that worked for us, as well as some invaluable support groups that you can consult for advice tailored to your child's needs.


Dear Richard Dawkins, You are Wrong

It's been one of those weeks where a bigot with a large following and a loud microphone, makes public his ignorance of Down's syndrome. This time it was the turn of Richard Dawkins. The following piece was written through the night, shaking with anger and hurt. 

My night thoughts ultimately received over 16K likes.  I guess that, in a nutshell, is the power of blogging, the power of a simple Down's syndrome blog, the ability our words have to reach others and create change.

Here is what I wrote:

Dear Richard Dawkins, You Are Wrong

Richard Dawkins, atheist author, provocateur, scientist, you must by now be well aware of the furore over your comments yesterday.
Comments that it was 'immoral' to bring a baby with Down's syndrome into the world if you have a choice.
'Abort it and try again', was your advice because it is the 'civilised' thing to do as 'they are foetuses, diagnosed before they have human feelings.'
As I watched the Twitter debate unfurl, you continued that you would not recommend abortion for individuals with Autism, say, as they 'contribute' to society, for they are 'enhanced', which, in your view those with Trisomy 21 are not. You even went so far as to say children with Down's syndrome 'suffer'.
Now hold your horses just one moment Mr Dawkins. I think perhaps you are confusing non-essentialist, humanist thinking with a loss of humanity here.

An I Love You Natty Book Signing to Remember

We'd never experienced a book signing. 

Well not from the nervous-that-no-one-will-turn-up angle anyway.


I Love You Natty book signing

We'd queued up with our copy of books for respected authors to sign once or twice before. But they were experts, they belonged in book shops scribbling their signatures into pages.

Today was our turn, our turn to sit by a table full of I Love You Natty: A Sibling's Introduction To Down's Syndrome while people came and scrutinised it, and we had no idea what to expect.

Last night as I tried to prepare by working out what we would all wear and gathering props for the table, I read an article by an accomplished author on signings. He said that if you meet one person and chat about your book at a signing in a local store then the event is a success. It's about meeting people and not about selling books. 

Wise advice I thought.


I then saw a poster on Pinterest that said;


"If I inspire just one person with my book, 
if I change just one life, then my life will be complete."


That is my motivation exactly. I nodded at the screen.

And after reading these two things I decided that it didn't matter if we just chatted to one person today and that person didn't buy our book but went home with a changed perception of Down's syndrome. That was the aim.

We arrived early, with bucket loads of chromosome-shaped jelly beans, a box of books and Mia's favourite teddy Huggy, who makes an appearance in the book. Natty and Daddy and our screenwriter frend Peter Cadwell joined us later.

And from there the next 3 hours were a blur. 

A wonderful happy, emotional blur of chatting to families on holiday, local families, regulars in the shop, staff, parents and classmates and those who kept dropping by for another handful of jelly beans (I will respect the anonymity of those members of staff who are particularly partial to fruity confectionary!)

At one point there was an inspirational Mum who runs a Down's syndrome support group up country, and couple with a grown up son with DS, a new local Mum and a friend who had made a huge effort to bring her son who has other disabilities that make town a tricky place to be. And we all chatted and hugged and took photos at once and simply knew on a deep level that we understood each other's lives somehow. Waterstones began to feel like the venue for an old school reunion even though most didn't know each other.

I Love You Natty book signing


Mia and Natty signed books, pen got on posh frocks and perhaps one too many jelly beans were consumed, but nobody cared. For this was a book signing Downs Side Up style.

And I realised that book shops are just as Meg Ryan describes in You've Got Mail. They are community hubs, so much more than simply sellers of words on paper. They provide a place where regulars congregate for coffee and buy a new dream to take them away from their own lives for a few hours at a time. They are welcoming and inclusive. They feel safe.

One lady who the staff knew by name, described how the team there had helped get her through bereavement when her husband passed away. They actually cared about her well-being. 

And yes, there were folk who scrutinised our precious work and turn up their noses and put it down and walked away, those who tutted because we were taking up too much floor space. But that is a levelling experience, we all need to know exactly how books are greeted by Everyone.

And so to our local Waterstones, I cannot thank you enough for believing in our little book on what many would consider a niche topic. For creating window displays and mobiles and putting the book in pride of place. Thank you for suggesting the signing and giving us the confidence to go through with it. We have learnt so very much today.

We're home tired and with aching cheeks from smiling so much. And no, we didn't eat all the jelly beans, we'll save them for another book signing of I Love You Natty. We are another step closer to covering our self-publishing costs and being able to donate books to where they are needed most, and just as importantly we have come home with a renewed sense of being a part of a global team, who are there for us as much as we try to be there for others.





Summer Holiday Solutions for SEN Families



For most of us that blank sheet of Summer time leads to a mixture of relief that our children are ours exclusively for the next few weeks, excitement at all the memory-making to be done, and not a little anxiety as to how we are going to fill each day, survive the meltdowns and find respite or affordable childcare if we need it.  

I certainly don't have all the answers, but here are a few tips to give you ideas and ease your sanity.


This is Elijah: a Mum's Journey with Down's syndrome


Today's #TeamT21 monthly blog round-up kicks off with a beautiful, honest and inspiring guest post from Elijah's mum. So much of what she says will resonate with you, from her early shock, to recognising just how great the changes that parenthood brings about in us all are.