Down Syndrome Awareness Month comes to a close


Where on earth did October go? 
In a flash Autumn has arrived, pumpkins have been carved and a lot of blogging about Down Syndrome has been done 
by a lot of fabulous people worldwide, 
many signing up to the 31 for 21 (31 posts for Trisomy 21) or #DSAM2012 (Down Syndrome Awareness Month).





I for one have made new friends, found new contacts and Down Syndrome support groups, read new and incredible blogs, learnt a thing or two about Down Syndrome I didn't know, signed up to take part in art and photography projects, online surveys and made a pledge to help end the R word. 

I hope that by posting daily I have helped to spread a little awareness of what Down Syndrome really means today. I have hopefully shattered a few fears, opened a few hearts, enlightened a few who were ignorant, shone a light on a few shadows, offered some advice and support and of course, made you giggle too.

Do take time to look back over the month's posts, they are all collected on one page to make it easy to do.

And most of all THANK YOU ALL for sharing your personal stories, your photos and for helping to spread further understanding and acceptance of Down Syndrome.

Down Syndrome Medical Research

Some time ago I was asked to write about the parent's view of medical research for DSRF UK (Down Syndrome Research Foundation).

Although of course we don't want our children altered, heaven forbid that 70s trend of facial plastic surgery for cosmetic purposes, we all want to enhance their lives as much as possible for as long as possible.

This is where Down Syndrome Research Foundation step in, with research into the use of vitamin supplements for example and more laterly, trials into medication that might improve concentration, memory and delay Alzheimers. Read about the current trial by Roche here.

If this interests you, you can follow the group on Twitter and Facebook too.

Down Syndrome: Medical Mondays

Jen Logan of Down Wit Dat blog

Jen Logan over at Down Wid Dat is the Canadian Mum of twins, one of whom has Down Sydnrome. She is a nurse, and as such I find her blog a constant source of incredible information.
She's also a lovely supportive person, writes honestly and with clarity and humour and is well worth following.

Jen has also blogged daily during Down Syndrome Awareness Month, or 31 for 21, and each Monday  she has posted a medical themed article; Medical Mondays. I hope you find them as useful as I did. And when you have read those, pop over and see her twins in their monster costumes!



A Brief History of Down Syndrome

Thyroid Disorders and Down Syndrome

The Brain and Trisomy 21 part 1

The Brain and Trisomy 21 part 2

Silent Sunday 28th October 2012


Spread the Word to stop the R Word

In America 'mental retardation' is still given as a diagnosis, and the word 'retard' serves as an insult. 



The R word is fortunately not one that we often hear in the UK but sadly we have other equally derisive and hurtful terms; 'Mong' being the one that springs to my mind, having been used recently by a high profile comedian who later claimed he 'didn't mean it that way'. 

We must all get together to squash the use of all and any such offensive terms. Even the 'he's not quite all there,' used by the older generation cuts deep.

Please join the Spread the Word to End the R Word campaign by signing a pledge not to use such language here.

And if you are in any doubt as to why we need to do this, or why such language is so very offensive to those with Learning Disabilities, please read this open letter to Ann Coulter, who used the R word as an insult to Obama. It is written by John Franklin Stephens, an athlete who competed in the Special Olympics, who has Down Syndrome. It is beautiful, eloquent and powerful.

Reading and Writing Tips for Children with Down Syndrome

Natty writes her name independently
Yesterday I found a scrap of paper on which Natty had written her name, independently, without a model, and without anyone even watching. 
This was a momentous occasion for all of us, something we have been working towards for years if the truth be known.

I don't have all the answers, or all the ideas that will work for your child, all children develop at their own pace and enjoy different activities. Natty just happens to like writing and here are a few of the things that worked for her as she begins to write. 

We didn't do these activities exhaustively, but at Natty's pace and when she felt like it. Doing activities in a fun way in short bursts is much better than forcing your child to sit and endure a task for a long time. Other activities for speech and physio took over at different times as did hospital stays and so on. This is just a guide.

When Natty was around 2 years old, a speech therapist from charity Symbol UK visited our local area and told us she was ready for sound work. We were using Makaton and Natty was making some lovely sounds and simple words at that point (It's hard to remember, but I think 'Daddy' and 'cake' and 'star' and 'biscuit' were among her first essential utterances.) We were also using the See and Learn materials from DownsEd which involved matching pictures in the early stages.

She put 2 cards in front of Natty, one with an 'a' and one with a 'n'. She then held up an 'a' card and using Makaton she asked her to find the 'same'. Natty did this with her eyes. I remember watching her closely and seeing her look at the other 'a'. She had done it!

This was a very emotional moment for us all and there a few tears. Why? Because we could have been doing this sooner, but had lacked the guidance. Because we were relieved to see the way forward. Because we wanted everyone to know what was possible for children with DS. Because we knew a lot of hard work was going to be involved from now on...

Jolly Phonics and Ruth Miskin cards
We rushed out to buy various sets of flashcards with the letters written clearly on them. A set sat in the bathroom at home and pre-school (potty time seemed to work well for us as a time to work with sounds). Most usefully we bought 2 Jolly Phonics friezes, from Amazon, showing all the sounds and an accompanying action. For example 'a' is a tapping motion going up the arm, signifying 'ants crawling up the arm'. 
We played the CD with catchy rhymes in the car. (Available from ELC).

Children with DS are visual learners, so seeing a picture as well as doing/watching an action helps cement the sound they are hearing/producing (in the way that Makaton works wonders for language development).
Daddy Downs Side Up and I spent a week of evenings cutting them to size, laminating them and rounding the corners for safety. Time and money well spent, as we still use them. If you can beg, borrow or buy a laminator you will use it constantly.
  • Focus on one sound/action at a time.
  • Choose sounds your child can already make at first.
  • Then show 2 different cards and ask them which one is 'a' for example. Looking at the right card counts as a correct answer, so little one doesn't have to be able to point.
  • Children who are able to walk love finding the letter sounds hidden around the house, or jumping onto the correct sound on the floor.
  • With 2 set you can play snap and other matching games.

When Natty began school at 4, she knew most of her phonic sounds by sight. However, she began reading, using a whole word approach. There is evidence that children with DS are very able at this, recognising whole words by shape alone. It's very useful for high frequency words that follow no logical sound pattern as well. So we: 
  • Made flashcards with words on and stuck them around the house/ on the fridge 
  • Matched the mini flashcards to words that were the same within texts. 
  • Made simple games of snap/bingo with the words
She then began reading simple texts using these words (Oxford Reading Tree), but we kept up the individual phonics work with a view to her learning to blend and write. After all, we all read using a combination of whole word recognition, blending and prediction based on understanding of what will come next.


Natty traced her name onto her
Pre-School graduation mortar board
Next came learning to write these sounds that she could by now read. 

The correct writing position is vital, so that your child has core stability, giving the strength to write.

We purchased a variety of pencil grips and played around til we found one that suited her fingers. We then found triangular pencils with grooves cut in them and we moved to those.

We began by using dots for Natty to trace over (you can find fonts that do this on your pc or you can create the dots freehand), letter shapes to colour in (free downloads are widely available online) and guided Natty's arm from the elbow to make the shapes to encourage errorless learning. There are also letter tracing Apps for iPhones and iPads.
Natty the Kumon tracing books (available from Amazon) as they provide simple steps to writing in a fun, bright and interesting way.

Natty's TA made sure that she was sitting in a stable position at her desk. In order to have core stability and pencil control your feet must be grounded. At school Natty has a foot wedge, a textured cushion which stops her fidgeting and a writing slope. At home we used either a small chair and table, or later on a Tripp Trapp chair which has a built in foot ledge. You could use cushions, books or a toilet step for your child's feet. We found a writing slope in IKEA for around £2.


Seating position is crucial
A writing slope makes life easier

To stop paper and slopes sliding around cut a length of non slip material (available from kitchen shops) to put underneath.

When Natty was showing signs of being ready to write independently, we introduced the Ruth Miskin flashcards (part of the Read Write Inc scheme), again a couple of pounds from Amazon. They show a picture within each letter and give you a catch phrase to remember how to write each one. (Shown above).
  • 'round the apple and down the leaf' for 'a', shown above.
  • 'down the tower and across the tower' for 't'.
  • 'down the horn, up the horn and round the yak's face' for 'y'.
  • For the capital N of her name we just shouted 'up down up STOP', which Natty adored.
Natty practised writing over countless different printed towers, apples and yaks, before we removed the pictures altogether and simply repeated the phrases as she wrote. We are just at the beginning of the writing journey, but here she is, writing her name without help and leaving it proudly for Mummy to find.

Here's a little video we made at home last year of Natty, in Reception class, learning her sounds and words and beginning to read. Mia was the camera woman by the way!



Writing her Name: Natty

I just had to share this with you.

I've just sat down at my desk, the girls are fed and watered and soundly asleep in their beds (for now!)

Sitting there in front of me, written in bold red board marker on a scrap of paper, is Natty's name. She has written it herself without help.

So many emotions, such pride, such relief.

It's been hard work and a long journey to reach this point, with a lot of help from Jolly Phonics, Ruth Miskin, a writing slope, pencil grips, a fidget cushion, a foot step, a lady called H and one called Lottie. 

I will resolve to do some blog posts about how we got here, but for now.... ta da! There are no limits.


Downs Syndrome Awareness Month #DSAM2012


The month of October is 
World Down Syndrome Awareness Month.
#DSAM2012
Each day I hope to add an inspiring blog, link, photo, event or nugget of information to 
help you get involved.




Day 1 - It's Down's Syndrome Awareness Month. Please help us gently change perceptions of Down's Syndrome from within hearts. Spread the word. www.downssideup.com


Day 3 - Go and explore some new websites. Are you familiar with the Down's Syndrome Association? How about the Down's Education materials? Check out Singing Hands and Makaton materials. All the links are here.


Day 4 - I bring you a beautiful short film called 'Indelible'. Please watch. It has brought tears to my eyes with it's perfection. Indelible

Day 5 - Have you uploaded an image of your child to Downs Syndrome The Big Picture yet? This in an amazing UK-based art project on a scale yet to be seen.

Day 6 - Over in America, Noah's Dad is filling a Facebook page full of pictures and stories of children with Down's Syndrome on his Wall of Awesome Pop over and add your inspirational photo and story.

Day 7 - If you need reminding what an amazing parent you are, what a great job you are doing, if some days it feels like wading through a swimming pool full of treacle. Read this. Erma Bombeck: Special Mothers (and Fathers!) 

Day 8A picture speaks a thousand words Browse through our Photo Gallery of Hope.


Day 9 - Read an inspirational book, watch a powerful film, open your eyes with an innovative documentary... Here's our list of suggestions Please let us know what your favourites are.

Day 10 Are you taking enough time for yourself? Read my experience of respite... and what happens when you don't take enough.

Day 11 - Photographer Richard Bailey and the DSA began the inspirational photographic competition Shifting Perspectives 8 years ago. Each year it features different aspects of Down's Syndrome. Our friend Rory was a winner last year and he is a photographer with Downs Syndrome. The beauty of this exhibition is that it is available as a free app for your iPhone or iPad.

Day 12 - It's Friday! Let's spread the inspiration far and wide. Join me by posting a beautiful photo or an inspirational quote today. Pop it on your Facebook page, on our Facebook wall or on Twitter with the hashtag #DSAM2012, or simply leave a comment at the bottom of this blog. Have a great weekend everyone x


Day 13


Day 14 - Take this short survey by Circle 21, to compare facilities and support for those with Down's Syndrome worldwide. The best place in the world to live with Down's Syndrome

Day 15 - Watch the little film we made with a few other families to promote a local tourist attraction. Natty is wearing bright green trousers and is hard to spot as she is just like all the other kids in the piece.  Just one of the gang. Eden: The Butterfly Effect.

Day 16 - Shabang have produced an amazing 2013 calendar featuring lots of gorgeous children with disabilities. What wonderful role models they are indeed! Buy your copy here while stocks last.

Day 17 - I am so envious of anyone who lives near enough to attend the amazing Disability Rocks Festival in Leeds this December. Not least because our idols Singing Hands will be there. If you do live within travelling distance, check out the event here.

Day 18 - Would you like to meet Natty and I? Here we are doing a little interview at home about how Downs Side Up all began. Listen out for Natty thanking her chickens for their eggs...
And here is Wednesday's BBC Radio Devon interview with Fitz on the subject of proposed changes to Universal Credits. Click here. 35 minutes in.

Day 19 - A timeless tale of a little girl, a lost tooth and a golden chromosome Princess Natalia and the Toothless Fairy

Day 20 - Sleep Solutions: A Guest post by sleep practitioner Jane Armstrong. Sleep Solutions for children with Down's Sydrome

Day 21 - The British Institute of Learning Disabilities are an amazing group of people who offer research, support and training for adults with learning disabilities. I was recently honoured to be asked to take part in their annual conference and deliver the keynote speech. To say the it was a learning curve for me is an understatement. Read about my experience here

Day 22 - A little gift of thanks to our 2000th Twitter follower. Thank you to everyone who is helping to gently change perceptions of Down's Syndrome from within hearts. (I can't send you all a pressie though!) 

Day 23 - Now it's time to really get invovled.It's time to share your stories.

Day 24 - A candid behind the scenes film of the making of the Eden Project promotional film that Family Downs Side Up took part in. I almost like it better. Watch out for Natty running through the flowers and catching sight of the camera :)

Day 25 - I am extremely proud to have been asked to get involved in an exciting new book project which is due to be released soon. I have been asked to present at the launch on 21st March 2013 as part of World Down Syndrome Day. More beans as soon as I am allowed to spill them :)

Day 26 - Natty wrote her name independently for the first time yesterday. Here are a collection of ideas that have worked for  us on her journey towards writing. Writing Tips for Children with Down Syndrome from Jolly Phoics, to Ruth Miskin. There's a little video too, filmed by Natty's big sister.

Day 27 - Natty is featured in Jojo Maman Bebe's Christmas catalogue which comes out today. We are so proud of her for teaching society that beauty comes in many forms x


Day 28 - Spread the Word to end the R Word. Sign an online pledge to never use such language and read the beautiful letter from the Special Olympics athlete with with DS to those who use insulting language to refer to those with learning disabilities.

Day 29 - Medical Mondays by Jen Logan over at Down Wit Dat. Jen is a nurse and Mum of twins, one of whom has DS. She is a font of all knowledge. Pop over to read about the brain, thyroid and history of DS.

Day 30 - The  Down Syndrome Research Foundation work for medical research to improve and maintain the quality of the lives of those with Down Syndrome. There is a group in the USA and in the UK. Read about the latest trials they are involved in above.

Day 31Down Syndrome Awareness Month comes to an end... Thank you all for joining us. I for one have learnt so much and have been bowled over by the supportive network I am part of.

A little gift for our 2000th Twitter follower

Since attending a very interesting seminar at the Britmums Live conference, entitled Sod the Stats, led by some of my most admired bloggers, I have been all the more determined to blog for the right reasons. Numbers do not count, but reaching the right people with your message does. Competing with other bloggers is futile, finding your own unique voice is all that matters.  This is one of the reasons that I am often guilty of not regularly reading blogs that are similar in topic to my own, for as supportive as we all are of each other we have to come to each and every post afresh.

Anyhow, that said, I happened to be online when my 2000th Twitter follower, EM_and_Lola, hopped aboard last week. I smiled. She clearly spotted the number as well, and wrote saying that she was excited to be the 2000th Downssideupper.

Well, like all our followers she was so lovely and supportive, and a single mum of a gorgeous little girl to boot, so I decided on the spur of the moment to send her a little gift to celebrate.

Gifts donated by Disney at Britmums Live and Disco Beads
I had a little Disney Minnie Mouse that had been part of my overly generous swag bag from the Britmums Live blogging event this year. (You know, the one that caused a sore shoulder carrying it home ;) )

For Em herself, something a little more special. 
I approached my wonderful friends over at Disco Beads and asked if they might consider a donation. Ever generous and warm of spirit they said yes straight away. If you don't already know Disco Beads, they make funky, affordable jewellery, charms and mobiles in beads that shine like cats' eyes in the light. They come in every conceiveable colour and can be made to order.
Billy and Vicky made Em a beautiful champagne gold double bracelet with extra sparkle. In exchange I gave them some home-grown broccoli and curly Kale and an IOU for some freshly laid eggs. That's how life should be.

I hope she likes it xxx


British Institute of Learning Disabilities Conference: Downs Side Up Keynote Speech


Innovation, Imagination and Inspiration

I was honoured and proud to be asked to present the closing keynote speech at the annual conference of The British Institute of Learning Disabilities (BILD).
This organisation has been around for 40 years, with a well-respected research base and vast experience in consultancy and an advisory capacity as well as providing evidence in legal cases. They really ought to be a household name in my opinion. And they  are such lovely people too!

I knew the delegates would include care providers, social workers, parents, medical professionals and adults with learning disabilities, so writing my piece became quite a task. Fighting a cold, I sat up til 1am on many consecutive nights, weighing up what to say to make the biggest impact, cover all bases, be the voice of other parents. 

Off I set, swapping wellies for heels, my uniform of jeans for a more credible dress, and leaving my Mummy brain behind, hoping to learn as much from others as I hoped to impart myself. I missed my girls before I had even walked out of the front door. But deep down there was a little secret part of me that was very very excited about the prosect of 2 full nights' undisturbed sleep!

On arrival at the designated hotel after a 6 hour journey, (including a car journey with Keith from BILD, during which I felt like my brain was a sponge, soaking up his experience and immense knowledge of all matters Learning Disability) I hooked up with the fabulous BILD team for dinner. While everyone was immediately welcoming and friendly, 2 faces stood out for me....

Peter and Lloyd (pictured below) swooped forward, shook my hand and impressed me with tales of acting in Great Expectations and East Enders, Speaking for Mencap, training medical professionals and organising the Special Olympics, as well as setting up the nationwide Changing Places scheme providing disability friendly toilet facilities. These trailblaizers both insisted that I sit next to them over dinner. My nerves were gone. Peter and Lloyd had intuitively sensed my vulnerability that evening and chatted easily to make me feel at home.

Peter and Lloyd (pictured below) both happen to have learning disabilities.


Lloyd (left), Hayley from Downs Side Up and Peter (right) at the BILD conference

During the meal Lloyd made my sides ache with his witty one-liners and perfect comedy timing, oh, and his unparalleled ability to eat a goldfish tank-sized bowl of ice-cream and chocolate brownies without drawing breath! Peter made us all smile when he took a nifty detour on his way back from the gents' to join an award ceremony taking place in another room 'because it looked like fun'. Frankly, we could all do with taking a leaf out of Peter's book, and being a little more spontaneous in our lives, stopping to enjoy the nicer things that catch our eye, living in the moment.

All at once I realised that I, disability campaigner and author of Downs Side Up, did not yet lead the inclusive life I strive for. Sadly I was denied the friendship of anyone who was slightly different to me when I was growing up, by a society who prefered to ignore their existence. Unlike Natty's generation who gain as much from her being amongst them as she learns from being included by others, I had missed out on a wonderful alternative perspective on life that friendships with those who are 'differently-abled' brings. 

If I had been brought up in this way, I am certain that Natty's birth would not have caused the ripples it did. Instead of that extra little chomosome being weighed down by the stigma it was piggy-backing, it would have been crystal clear in its transparency, unshrouded by dark, unspoken mystique. My fear and shock would never have had a chance to take hold.

I also met Jim Blair that evening, a consultant learning disability nurse at St George's Hospital. A man whose job it is to help patients with learning disabilities by explaining illnesses, procedures and medication by using pictures, easy to understand vocabulary, patient passports and other means. Jim is, quite simply, one of those professionals that needs cloning and putting into every hospital in the world.

I immediately wanted to rewrite my entire presentation that I had planned for the next afternoon. But it was late, and my head had yet to formulate exactly what it was that I was feeling, exactly how I would change it anyway... 


The day of the conference dawned 

I didn't feel like much breakfast. 
In knew the topic of the first sessions of the morning were going to be difficult to listen to as a parent. They were centred around a review of the Winterbourne View case (Winterbourne was a 'hospital' in which staff were secretly filmed abusing patients by Panorama). I am not naiive, we all know that abuse has and does happen and that is our job to whistleblow, and that organisations such as BILD pick up the pieces, but I was not prepared for how these sessions would make me feel.

As I sat in the front row and listened to the overwhelmingly positive review of investigations, steps and measures to close care facilities that are not up to scratch, standards set for care workers to adhere to my eyes began to prick. I wiped away a couple of tears. But the more I listened, the deeper the shameful travesty of the abuse and neglect became. 

I thought of the times that people have said how lucky Natty is to have a family like us. 
No. 

We are just an ordinary family with all our failings. Natty is more lucky to have been born into the 21st century within a reasonably enlightened society. Elsewhere in the world or at another point in history and her fate would have been very different. The tears then couldn't be stemmed. I let them wash down my face and fall into my lap, thinking of all the other children like Natty, the forgotten adults denied education or healthcare, shunned, ignored, feared, not allowed the social stimulation they thrive on.

The speakers voice again cut through my thoughts and I realised in a heartbeat how grateful I was for the professional angels who swoop in at the darkest of moments in all our lives. The doctors and learning disability nurses, the surgeons, the support groups and charities like BILD, the researchers and Quality Care Controllers. These are the people who make it their life's work to do their best to stop things going bady wrong, and none of us knows when we will need them. Then the tears became those of relief and thanks.



Break time! Coffee and biscuits. (Aaaand breathe...)

Suitably refreshed I sat down again to support Peter, Lloyd, Jim Blair and a precious Mum called Pauline talk about how simple 'reasonable adjustments' in hospital settings can not only make a patient's stay more pleasant, but are actually a requirement in order to save lives, as the Death by Indifference campaign by Mencap set out. I described Pauline later as 'the most amazing' woman, a term I use reservedly as anyone who knows me will attest. She is the most gentle, proud, positive and encouraging person and she has come so very far since the day 31 years ago, as a newly married young woman in her early twenties, she thought the term for her baby was a 'mongrel' as the phrase widely used then was, indeed 'mongol'. This year she watched her son David proudly carry the Paralympic Flame, having been chosen for his many life achievements.

Then Jim Blair put on a short film about Peter. Again an amazing tale of the power of the invisible safety net around us all. But what I didn't know was that Peter had been badly injured in an unprovoked attack last year. I wasn't prepared for that. Please watch Peter's 2 minute film here When the presentation was finished I flew to his side and hugged him. 'That shouldn't have happened to you. I'm so sorry.' I shook with anger. 
Peter had been glassed in the face one afternoon.

The day could not get any more emotional could it? But there was yet much more to learn. I decided to pass on the amazing  interactive workshops after lunch. I had heard so much about and needed to meet Kate, and the day was slipping away fast.

Kate: A BILD employee and inspiration

Kate is another incredible and inspirational woman. An attractive lady in her twenties, wearing a trouser suit and fashionable bobbed haircut, she works at BILD, lives independently with support, has a full social life, her own home and a mortgage. Kate has Down's Syndrome. If Natty can achieve what Kate has achieved I will be one very proud Mummy. Kate told me that her Mum was very nervous when she moved out of the family home, but that she was fine. I guess we Mums do fuss too much sometimes don't we!

The next hour was spent getting increasingly nervous about my presentation whilst mingling with organisers of support groups, care givers and publishers of specialist resources. Again the wealth of expertise, experience and massive support we all have for one another was vast. We are all louder if our voices are heard in unison after all. 
I believe there is no place for individuals who have their own agendas in this world of support, charity and campaign for change, although I am sure they exist.

And so, with this emotional build-up as background, Downs Side Up took to the podium. 

My story felt fluffy in comparison to what had gone before, like the story of a fire crew rescuing a fluffy kitten at the end of a distressing news bulletin. My unremarkable story of how we struggled to come to terms with Natty's extra chromosome in the early days, our shock and fear, in part, enhanced by the negative language used by the health professionals, their 'sorries' and their tears. 
Of the genesis of Downs Side Up as a blog and a wider support network. The story of Natty becoming one of the UKs first clothing models with a disability. But then I realised that by changing attitudes one by one, making small inroads, knocking down walls, opening doors we were creating implications for the wider picture. For perhaps
 "gently changing perceptions of Down's Syndrome 
from with hearts" 
was not only going to prevent other parents from feeling the desperation I, and my husband to a lesser extent, sadly experienced in the early days, and enable them to enjoy all those precious first moments with their newborn. But just perhaps my writing was going to have wider consequences than I imagined. Perhaps it would play its part in preventing future hate crime and abuse, by shining a light brightly into those shadows of ignorance.  

I cannot go back and change the start of my journey as Natty's Mum, nor can I change what has happened in our society's history, but I can join forces with the teams of incredible people who are doing something about BILDing a very different future for those with learning disabilities.

That takes Innovation, Inspiration and Imagination.



From one Sister to Another: From the Heart

Each of our girls has a scrapbook that we stick memorabilia into. 

Sometimes they go between home and school. It's a casual affair and often we forget to update them.

I opened Natty's yesterday to stick in a piece of artwork and this is what I found (word for word, spelling for spelling). 

I have a lump in my throat typing this up...



Messig From Mia

To Natty

I love you so much
and you are the best sister
in the world and so preshus to me.
You are so important to me
and if you weren't in this world
my life woudn't be the same
and that would be terrible.

So, I love you very much and you mean evrything to me

Lots and lots of love from Mia xxx

And so you see, all my fears for Mia when Natty entered her world, that she would hinder her, hold her back were unfounded. Yes, she takes up a lot of attention sometimes, but we make sure that Mia has plenty of alone time with each of us. Now I can see that the young woman Mia is turning into is caring, thoughtful and sensitive to others. She is always the first to tell schoolmates that 'we are all different'. Read Mia's blog post Mia's thoughts about her little sister Natty here.


The Toothless Fairy



Once Upon A Time there lived a little 
Princess called Natalia

"Natalia, I saw your tooth fall out so I came anyway. T Fairy :) "
She lived a very charmed Downs Side Up kind of life with her Mummy, Daddy, wonderful big sister and their 10 happy hens. Natalia had a golden extra chromosome which made her tinier, but no less and no more sweet than her older sibling.

Now Natalia was a girl who loved to do things in her own way and at her own pace. Woe betide anyone who tried to rush her, or indeed lend her too much of a helping hand.

And this was just as true in matters of the teeth as it was in any other of her daily activities. The little pointy white gnashers sat stock still for around a year after her classmates had begun to lose theirs. And when they began to wobble, they did it style. Achingly slowly, twisting and bending, teasing for months. Natalia refused to wiggle them to help them on their way. Instead the new adult teeth pushed their way out behind them, crocodile style. And still little pegs refused to budge.

One day, Princess Natalia had a tumble whilst chasing her friends. She banged her pretty little chin on a bench and those stubborn baby teeth received a knock. A drop of blood could be seen on her lip. But she continued to cling on to them.

Only now they had been shaken beyond the point of no return, whether Princess Natalia liked it or not.

The first one fell out that very evening over dinner. But Princess Natalia didn't make a fuss. She simply popped the tooth at the side of her plate and carried on eating. Her priorities were clear. 

After dinner Mummy and Daddy found the tooth and everyone was very excited. They celebrated the occasion by dancing around the kitchen, clapping and hugging each other just as they did when Princess Mia's teeth fell out. Everyone was proud and perhaps just a little sad, because Princess Natalia was now growing into a beautiful bigger girl, and leaving her babydom behind.

That night, she popped her tooth into the special fairy cushion that has been used for every lost tooth for years. She was tucked into her bed and read a story about the tooth fairy, with pictures of her in it. And as if by magic, in the morning she found a golden coin, the same shiny golden colour as her magic chromosome, and a brand new toothbrush with a handle like a crocodile. The tooth fairy was having a little joke about her double row of teeth perhaps...

The second tooth that had been given a knock was ready to fall out too. Mummy took Princess Natalia to the dentist to check that everything was fine and that profilactic antibiotics weren't needed. The dentist smiled and said all was well. Mummy and Daddy talked a lot about the next tooth coming out, and the cushion hung up to see in her bedroom where she could see it.

However, later that week, as Mummy was helping her to brush her teeth before bed, she noticed that the second tooth was missing! Where, oh where had it fallen out? The family searched around but to no avail. Natalia didn't seem worried and everyone decided that it must have fallen out in the park that afternoon. They tried not to worry about whether it had been swallowed.

Mummy wiped a little tear from her eye. Mia was scared in case the tooth fairy wouldn't come. Daddy was very quiet. Together they hatched a plan, with a little help from their online Downs Side Up friends, who told them that many of them had had mysterious disappearing teeth too...

They left the special pillow out on Natalia's bed, with a tiny note, explaining that the tooth was lost. They hoped that that would be enough for a repeat visit from their flying friend. Princess Natalia cried a little that bedtime and said she was sad, perhaps because she didn't want her tooth to fall out at all, perhaps because it was lost.

But lo and behold, in the morning the tooth fairy had been! She had left another golden coin and a teeny tiny note on which was written in teeny tiny writing 

"Natalia, I saw your tooth fall out, so I came anyway. T Fairy x"

We decided that that meant her name began with T, possibly Tabitha. Everyone squealed with relief.

And so you see, the moral of the story is that having an extra golden chromosome doesn't really change your rights of passage of growing up, like losing teeth and waiting for tooth fairies. They might flutter in through your window a little later in life than they did for your brothers and sisters. You might need what is happening to you explaining a little more clearly, with pictures, but in the end it's the same experience. And some experiences are really worth waiting for.

Mummy x


Cover Girl: Natty G



Here's Natty's latest appearance, this time on the cover of My Child and Me Magazine



This is a wonderful, glossy magazine aimed at parents of children with additional needs. It is available bi-monthly and can be ordered via an online subscription here.



They ran a wonderful article written by her Uncle Carl a few months ago, so we might be slightly biased ;)