The message is breaking through....

It is time to take a breath and assess how far Down's Side Up has come, celebrate the great things achieved and focus on the end goal.  I have been marching forward on a crusade to change the way the world perceives Down's Syndrome for just under two months now.  Two short months...

If you count one just one friend without a child with Down's Syndrome telling me she has now 'got it', then I have succeeded.

If you count just one new Mum with a baby with Down's Syndrome feeling uplifted, inspired and 'kept going', then all the late nights writing and networking have been worth it.

If you count one friend writing and telling me that she will not repeat the testing she had in her first pregnancy in any future pregnancies, then I have removed the fear from people's minds.

If one lady whose baby with Down's Syndrome was stillborn can bring herself to read my musings, I am deeply humbled.


If you consider that a link to my blog is going to be included in a book used in GP update training, than we have succeeded in gaining the attention of the medical profession.

If you count one Mum telling me how the midwife told her to 'go home and think about whether she wanted to keep her baby', just two short years ago, I know we have a long way still to go.

If you count just one of Natty's classmates Mums telling me that she watched the video of Natty reading and thinks she reads better than her child,  I have gained respect and belief of others in our children.

If you count the face of a child with Down's Syndrome being used to model clothes and market luxury holidays, then I have demystified that extra chromosome. 

If you count appearing in a national Newspaper, read by 5 million Britons daily, then I have spread the word that Down's Syndrome is beautiful.

If my postman squeezes me in a bear hug and tells me he is proud of me, I know we are loved as a family. 

If you count a stranger telling me of a friend who gave her baby up for adoption, whilst crying tears of gratitude for the work I am doing, then perhaps I can hope to prevent other women finding themselves in such a desperate place.



Down's Syndrome is beautiful.  Down's Syndrome is not to be feared.   Down's Syndrome is to be embraced and included.  Please help me spread my word dear friends xxx


Media Parachute Deployed!



The leap into the world of media was text book.  
Alison Smith-Squire's training prepared us perfectly.  Her article was beautifully light and positive.  She formed a shield around our family.
Natty's pictures spoke forth from the pages of the Sun, the most widely-read paper in Britain. (5 million or so I hear). 

"Down's syndrome is not to be feared.  Down's Syndrome is beautiful."

We didn't get snagged on any branches on the way down. 
We weren't swallowed in an abyss at all, we didn't even reach the water.
A parachute deployed itself, and we found ourselves rising on warm winds of love, humbled by the words of encouragement and support from our community, and our wider family within Facebook and Twitter.  
The parachute was clearly instantly recognisable for many.  The nation's media watched it beautifully glide.  They decided to keep it aloft.

Suddenly other national papers, radio stations and magazines are stepping forward, willing to spread our message.
TV appearances are planned.  I have been asked to write for a Paediatric Nursing journal and get involved with midwifery training.  Tweets are flying, in no small part due to the beautiful organic, ethical clothing company Frugi that Natty will be modelling for.  
I think we have stuck a cord people...


We will change attitudes at every level for all those with Down's Syndrome.


On The Brink

Tonight I write, unplanned and unprepared.  Exhausted after an exciting and emotional week.  In haste almost, but from the heart.
I feel as if I stand on the edge of a precipice.  Below me the unknown.  Pitch black.  The world of media and putting my precious babies into the limelight.  Of critics, bigots, jealousy.  
Who knows how deep the chasm is, what obstacles we will find ourselves falling onto, what lies at the bottom.
Others are charting this hostile territory too.  But they are thousands of miles away and my ethos doesn't necessarily sit completely alongside theirs.  So I am alone when I jump.

Behind me is a queue of parents,  both friends and strangers I have met along the way and their children, some who have varying disabilities.  All waiting for me to test the water, pave the way, soften the blow, create change.
I take comfort from their support, their desperate need for the world to alter it's attitude towards disability.  I am blessed to be surrounded by such fiercely loving, supportive and protective family, friends and community members.   I also cannot believe how I stumbled upon a journalist who writes for the tabloids, but who is a mum foremost and a person with great integrity.  We also happen to really hit it off, what are the chances...?

Some times things happen in life for a reason... 
Language teacher and music biz guru have 2 beautiful daughters. (Actually language teacher, chatterbox and general lover of people.)  One has Down's Syndrome.  The other immediately takes on the mantle of fiercely loving, protective sister and mentor. 

A doctor tells me we will be ambassadors for children like this just after Natty is born.  (No pressure there then!)

We meet a beautiful photographer who takes pictures of Natty that get me thinking (Traci Giles, we adore you).  Natty is a natural in front of the camera.

Husband buys me a screamingly powerful Mac and a brilliant camera, both quite useful in this business of media.  (Thank you darling x)

Natty starts school and people ask "What are you going to do with your time?"  Another gauntlet thrown down.  I fill the time with making teaching materials and giving Natty the 'extra' stuff she needs.  That lasts 3 months before it is not enough.

Stories of teachers, doctors and midwives getting it so wrong with our kids fire up my imagination.  (Well, they make my blood boil to be exact.)  I'm an educated professional, so these people do not phase me one jot.  (However, I believe that there are two ways to skin a cat...  by shouting at it, or by gently stroking it and asking it nicely to do so....you get my drift.) 

I see a lady on morning tv talking about how she was pressured into a termination hours after her baby was diagnosed as having Down's Syndrome.  Something snaps in my head and I decide 'to make a change'.

I start the little blogette, as it became affectionately named.  I always planned a book; a kids story with a character with Down's, my husband's life story, or a personal journey map as a mum, I was never quite sure, I never had time to think it out.  But this would do as a trial run.

I join some blog networks.

I write to a few companies asking if they want Natty be in their ads, and then WHOOSH.

We clearly struck a chord somewhere along the line.

Thank you all for following us.  I am just trying to do my best for us all.  
I am jumping tomorrow and I hope I will simply dive into a warm pool of water, creating no more than a few ripples.   
I hope you will all follow in my wake, unafraid.  
I hope the world will see us basking there, relaxed and at home.  I hope they get so accustomed to seeing our children in the media that they cease to notice their differences.

As I wrote, the article came online.  It was abridged, it wasn't quite what Alison and I had planned, but it is there.  It is positive.  It is light and airy.  It will reach 5 million people over their morning cuppa.  Natty's beautiful face is shining out like a sun from the pages of the Sun.  

And a picture paints a thousand words :)






The Touch that Will Change the World


Sometimes the most tender words of support come from unexpected sources, and when you are least looking for them.
Today, someone very senior in Natty's world of education, someone I have a great deal of respect for, sent me an email with the words, 
"...the bit about the touch that causes the touch...that's you!"

There followed this poem, by Kent Nerburn.  Read it slowly.


There is in each of us, no matter how humble, a capacity for love. 
Even if our lives have not taken the course we had envisioned, 
Even if  we are less than the shape of our dreams, we are part of the human family. 
Somewhere, in the most inconsequential corners of our lives, is  the opportunity for love. 

If I am blind, I can run my hand across the back of a shell and celebrate beauty. 
If I have no legs, I can sit in quiet wonder before the restless murmurs of the sea. 
If I am wounded in spirit, I can reach  out my hand to those who are hurting. 
If I am lonely, I can go among those who are desperate for love. 
There is no tragedy or injustice so great, no life so small and inconsequential, that we cannot bear witness to the light in the quiet acts and hidden moments of our days.

And who can say which of these acts and moments will make a difference? 
The universe is a vast and magical membrane of meaning, 
Stretching across time and space, and it is not given to us to know her  secrets and Her ways. Perhaps we were placed here to meet the challenge of a single moment; 
Perhaps the touch we give will cause the touch that will change the world.


These words remind me of an elderly lady I met on a bus once.  She wore dark glasses.  She told me her eyesight was failing and she had been to visit a famous landmark that afternoon to wonder at it's beauty.  She could only see contrast, but she said she felt so lucky that she had warning of the loss to come.  That she could go out and savour each last moment of sight, to remember for ever.  What courage.

I hope these words bring the boost that many of you need.  
You are all touching the world and bringing about change.
Our amazing children all deserve a decent shot at life because they too will create change in others.



Learning to Read (and a 7 yr old Camera Woman)




My motivations for rushing to post this hastily hand-crafted video were three quotes from people close to me in the last 24 hours...

My husband, "Children with special needs don't achieve extraordinary things without extraordinary levels of input, encouragement and commitment." (That's true, but the same can be said of all children.  I wanted to show how simple and fun you can make developmental exercises at home.)

A Speech and Language Therapist friend whom I have not yet had the pleasure of meeting, "For me it's all about helping people hear the important message about making the most of exploring a variety of activities, creating different materials that you child will like and celebrating every tiny communication moment.  It's about having your eyes fixed on the end goal - confident competent communicators who resourceful use everything and everyone to shout to the world around them." (She's right, and boy, can Natty shout to the world around her!)

Our birth companion, "Through your blog you are changing ingrained belief systems by being so soft, so real and so honest,  by showing such invisible vulnerability, that it becomes irresistible."  (That one brought tears to my eyes.)


So here we have a snippet of the kind of activities we do on a weekly basis at home.  You can plainly see that they are working.  I have much more exciting ones up my sleeve, but I had run out of post-it notes and glitter, and my camera woman was only 7 years old! (Didn't she do a great job!)

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For those interested in the nitty gritty:
We are using 2 Jolly Phonics friezes, cut up and laminated (copyright would not allow you to photocopy them).  We accompany each sound with its action. Note Natty starts singing the "C,C, clicking castenets' song that accompanies the 'C' sound.
We then use a Jolly Phonics set of sound cards.  You could make your own. We drop the actions as the sounds are learnt.
Ask your child to identify words and sounds before you move on to asking them to produce them. ("Find...", before"what does this say?")
Note I ask her to find an 'S' which did not exist. She remained unfazed.
Then move on to whole words.  Label items, accompany with pictures, always try to use in context.  Children with Down's Syndrome are visual learners, but I think Natty is also a kinaesthetic learner - actions, texture, movement, song and movement help too.
And finally you are ready for simple reading schemes.  Pre-teach the words before you start a book.  Present the words in as many formats as you can.  Create your own silly sentences.  Point out the same words in other texts or on posters etc. Note the way Natty self-corrects when she makes a mistake.  Allow time for this.

And most importantly...DON'T GIVE UP xxx


These Boots Were Made For Walking


This image struck me as rather poignantour family's muddy walking boots lined up outside to dry.

I have searched long and hard for what must be the tiniest pair of stout footwear available on the market.  Then finally a pair came up on an auction site, a UK kids' 7, second hand, in grey and pink. I snapped them up.

These boots were made for walking - exercise counts