Tiaras, Medics and Monkeys: Let's MiXit for Positive Choices '15

Tiaras, Medics and Monkeys: 
Let's MiXit for Positive Choices '15


Mia and Natty meet the famous inclusive pop group MiXit

"Learning disability is everyone's business," said LDAA nurse Sarah O'Donnell.


"Everyone has equal worth," asserted the brother and sister team Jane and Jonathan as their shared the tragic details of Paul's Legacy with us all.

"Together we are better," Helen Laverty repeated, as she brought together 400 delegates at Positive Choices '15, a learning disability nursing conference held in Cardiff this year.

"This is my story!" shouted inclusive pop group MiXit.

And so went the flavour of the day.

Tips and Contacts for School Pupils with Down's Syndrome/SEN

It's that time of year when many of you are preparing your children for a new term at school.

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 for the first time. 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, whatever their stage of schooling.


Frugi Shoot for Downs Side Up Model Natty: Under Wraps

Over three years ago a little model with Down's syndrome burst onto the scene! This was such an important step for inclusive advertising and you can read more about the Pioneers for change here.

Inclusion: Natty and big sister Mia in the Frugi catalogue

During the Easter holidays we were super excited to be asked to return to our friends at Frugi for another photo shoot. 

Talking About Down's Syndrome - Conversations for New Parents

I am more than just a smidgen excited to be sitting writing this blog post next to a cardboard box brimming with colourful, shiny, inviting packs of cards. The cards are not part of a game. There's no element of snap, no quiz questions. There is no competition or race against time.

The Fink conversation cards are bright and inviting



My Sunday Photos - A Right Royal Garden Party Invite

Nestled amongst the junk mail and election manifesto flyers was this rather distinguished envelope this week. 

It was made from thick buff paper, felt as if contained a stiff card and was sporting a very impressive stamp. Royal Mail indeed. 

It must be noted that it was sent second class post though. Actually, come to think of it, I'm surprised the Queen has to pay for postage at all, but there we go...





Anyhow, I flipped over the exciting looking mail and noted the crest on the back. My hands began to shake and my stomach flipped. The family gathered round to see.



But how to open such an important message? I'd probably want to keep the envelope, so should I steam or slice it's contents free?

I took a moment, OK more like half an hour, to drink a cup of tea and ponder the dilemma. A very British response to a very British invite I realise.

But in the end I decided on the fish boning knife to get inside the paper carrier.
And there, lo and behold, the most exciting invitation of my life. One that brought tears to my eyes, a swell to my heart and then immediately a slightly odd sensation that can best be described as 'hat panic'. It was an invitation to a Garden Party at Buckingham Palace for Bob and I.



And after that I am left pretty speechless. What a massive honour, what an incredible journey for a little blog. I am left with nothing less than gratitude and pride for how far we have come.



You might also like to read what happened when I visited No.10 Downing Street with Mencap.





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Are Women Given Enough Support at Antenatal Screening Tests

Do women really have a choice whether to abort or not following an antenatal diagnosis of a disability?

Are we walking blindfold into a society where eugenics is gently-presented, sugar-coated and unthinkingly accepted? 

Are we fooling ourselves that we are exercising choice in our pregnancies, where actually choice, the choice to continue with certain pregnancies is being removed?

This week a new 'safer, earlier and 99% accurate' blood test was unveiled by Great Ormond Street Hospital. I can detect Down's syndrome along with other chromosomal conditions. I've been asked countless times by the media to quote my thoughts about the test. What concerns me most is how the test is implemented.

Are women given unbiased support to make informed choices at point of diagnosis?
It’s easy to assume that the moral dilemma of whether to abort your unborn baby that you’ve learned has a disability, is confined to a shouty debate between pro-choicers on the right to end a pregnancy at any stage, for any reason, and equally vociferous pro-lifers camped outside abortion clinics with their gory billboard campaigns, designed to shock and scare.


We Host a BBC Radio Down's Syndrome Special

On Saturday March 21st at some unearthly hour, I was awoken by my iPhone alarm playing harp melodies (which I really must change as it grates no end these days).

Now I am not a morning person. At all. And 5am is not a time I am fond of. 

Cradling my babies, waking up to leave home on far flung adventures and Down's syndrome advocacy are the only exceptions in my book. 



BBC Radio Cornwall Breakfast Show on World Down Syndrome Day

Now Saturday March 21st was World Down Syndrome Day as many of you know. And our dear friends at BBC Radio Cornwall had succumbed to having their arms twisted offered us a two hour programme dedicated to the day. Two whole hours to chat about the myths and facts surrounding Trisomy 21 and an entire programme in which to interview who we liked and even choose some music that was important to us.

How would you fill a two hour radio programme? 
Who would you interview? 
Which 2 songs would you choose?

I spent a month or so making spidergrams of ideas and contacting folk to take part. The lovely radio team let us work with reporter Martha for two days and out we went to interview the ladies who run the Cornwall Down's Syndrome Support Group, Shaun Tubb a young who works at People and Gardens nursery who has Down's syndrome and our girls Mia and Natty. All this was 'in the can', as they say, in advance.

I interviewed Shaun Tubb who works at People and Gardens


The day arrived and I rolled out of bed at 5am, grabbed my notes and a copy of our book to gift the co-presenter and set off to Truro to the studio. It was early quiet at 6.30 am with just a couple of presenters manning the fort. 

You can listen to the entire live show here from 7-9am, the last 2 hours of the show. We really did cover everything in my trusty spirdergram, including all those important myths people hold about our children, alongside:


interviews
flashmobs
inclusion
modelling
World Down Syndrome Day
abortion
work
schooling
relationships
pets
vaccinations
eugenics
older mothers
being musical and loving
Makaton
breastfeeding
Cornwall Down's Syndrome Support Group
fundraising 
and much much more...

Downs Side Up chatting about the benefits of pets on BBC Radio Cornwall

And which songs did I choose?

Well, Mia and Natty picked Ollie Murs - Beautiful to Me:

Love don't ever change the way you are
You light up the sky just like a star
I don't care what you say 
You're beautiful to me


and I picked Emily Sandé - Read All About It, my blogging song, a real motivator when the going gets tough:

You've got the words to change a nation
But you're biting your tongue
You've spent a life time stuck in silence
Afraid you'll say something wrong
If no one ever hears it how we gonna learn your song?

The whole morning was an absolutely fabulous experience. As a former voice-over artist I've always fancied myself as a radio presenter. Maybe they'll let me read the news one day... 

Team T21 raised an fabulous £1885 for the Down's Syndrome Association on World Down Syndrome Day

To all of you who listened, who joined in the celebrations on #WDSD15 and who donated to our fundraiser, we thank you. We raised a fabulous £1885 for the Down's Syndrome Association and the fabulous work that they do.