Judging the SWAN Blog Awards

Renata over at Just Bring The Chocolate asked me if I would sit on the judging panel of the SWAN UK Blog Awards in this, their first year.



For those of you that don't know, SWAN means Syndrome Without a Name, and their are many children, SWANs who simply don't fit into any recognised medical box, the cause of whose symptoms and conditions remain a mystery.

This brings many challenges for parents, not least lack of support, constant battles, but also in some cases a sense of suspicion from medical professionals who cannot rule out an environmental cause. I cannot imagine dealing with the challenges of my child's condition and also feeling that others thought it might be in some way my fault.

SWAN UK provides incredible support for these families, and this year have hosted a blog awards to raise awareness of what they do.

The categories are:
MOST INSPIRATIONAL
FUNNIEST
MOST POWERFUL
MOST INFORMATIVE
BEST INTERNATIONAL

I am currently reading through the top 5 posts in each category to decide on the winners, which is an incredibly difficult job I can tell you. There is laughter, tears, goosebumps and a lump in my throat, as well as inpspiration by the bucketload. What an incredible honour to share such heartfelt stories.

We'll keep you posted when the results are out. But for now, why don't you hop over and read the finalists posts. It'll be time well spent I can tell you.

H x




Camerawoman NattyG presents her family

I really wanted to leave you on a Friday with a giggle. A light-hearted laugh. An antidote to all the parliamentary shanannigans and serious SEN articles and so on.

Well this week, when we returned home from Mia's school play, all on a high and singing proudly, full of jollity, Natty decided she would like to take some photos of the family.

We were all in the kitchen, just scoffing a late supper before bed. After all, you can't do a school play that finishes at 7.30 without celebratory chips afterwards can you....

Anyway, Daddy Downs Side Up gave Natty his phone and she began snapping away.

First she came up with this


then this


and finally this


Aren't they lovely? And very well taken Natty I must say.

Well then the little photo button must have slid across to video. We were all oblivious and carried on our happy dancing, whilst tidying the kitchen in readiness for bed, and posing for Natty's snaps in between.

When we looked at the results afterwards, this is what we found. Hilarious little 3 second clips of Natty's world. I have to admit that after watching them all, I was laughing so hard that I had to jiggle cross-legged to the loo. Maybe you just had to be there, or maybe you'll find it funny too. Bear in mind we all thought she was taking stills...

I bring you, Natty's camerawork: Clip 1, My Sister Mia
aka Animal from the Muppets




My Daddy and Mummy posing.
Haha, I had them fooled.



Mummy didn't know I took this one. 
Check out her moves!



And the one that made Mummy laugh so hard she cried:
Mummy folds a tea towel and poses for the camera whilst dancing.




Enjoy your Easter weekend! Much love from the Downs Side Up team x

All Party Parliamentary Group: Down's Syndrome

Recently an All Party Parliamentary Group DS was formed to draw up guidelines for best practice with regard to the education of children with Down's Syndrome. Each child is an individual, but our children do share particular learning prolfiles and if we can share information on that with each other and our schools, we can help ensure the very best for them.



You can download and read the full recommendations here, and they do indeed make positive reading. There are a few areas missing, and the DSA are still tweaking one or two recommendations in terms of specific learning schemes endorsed. But on the whole, I wish I had had such a document at my fingertips when we were drawing up Natalia's Statement of Education Need before she started school.

Yesterday, Sandy Lawrence who chairs the Cornwall Down's Syndrome Support Group invited 3 other Mums along with her to County Hall for a meeting with our local Director of Children, Schools and Families to discuss implementation of the guidelines locally.

We arrived, suited and booted so to speak, I had even dusted off a skirt and blazer. All of us were clutching our 36 page documents under our arms, each of us with a different experience of education and with children at different stages of the journey.

Between us we brought experience of primary and secondary schools, home education, flexi-schooling, Area Resource Bases, 2 of us were former teachers, one had a business background and the fourth a medical grounding.

The meeting went well. Trevor Doughty was clearly open to talking about improvements for our children and those with Chromosomal Syndromes that follow similar health and learning patterns. We all realise that purse strings are tight for all at the moment, and that money for support doesn't grow on trees, but I think we all felt there were ways we could re-use what we already had at our disposal in a more efficient way.

Within our County, that seemed to be:


  • Some flexibility of the transport system, so that parents didn't feel they would have to send their child to a further away special school or ARB, for fear that if their first choice of a nearby mainstream secondary school didn't work out for any reason they would then lose the right to free transport. The rules currently state that only if a school consider the placement of a pupil unsuitable will free transport continue to a subsequent school.
  • Ensuring support continued to allow children with additional needs or disabilities to be able to participate fully in after school clubs and school trips.
  • Rethinking the way existing speach therapists are used. Perhaps moving towards a place of fewer assessments and writing of reports, freeing up more time to spend actually engaging in therapy and activities.
  • Setting up a Co-Worker system, so that interested parents could be trained in basic speech therapy by the DSA or Symbol UK for example, so that they could set up and run small group sessions for children, under the supervision of a trained SALT. How wonderful would sing and Makaton sessions be for babies, or more targetted games and activities for older children!
  • Then we began to try to envisage a way to identify and bookmark a team of Special Interest Professionals would could be called upon coutywide to deliver advice and support to schools and parents. This could include parents, OT, SALT, Physiotherapist, TAs, teachers, IT and SEN software experts and more. That way, the onus on the parent to research and source cutting edge information would relax, and every child would get a fair bite of the cherry, regardless of the experience and expertise or interest level of their school.

As a group we determined to begin to organise this, for we are all doing our bit already by talking to schools and SENCOs. We just need to coordinate our efforts. And you can't say fairer than that. Perhaps you could do the same.



(Oh, and the crack team squeezed in a cuppa and bite of lunch together before heading off home. So a well spent day all round. I do love a bit of scampi and chips, don't you?)






SEN Magazine: A Parent's View of SENCOs

I recently wrote an article for SEN Magazine with advice, thoughts and tips for SENCOs from a parent's perpective




SENCOs vary wildly as does your experience of them, but all new SENCOs now have to be trained to Masters Degree level. All those I have ever spoken to have been enthusiastic and commited.

In this piece I highlight what a trightrope they walk, trying to please the Head and the parents.

I hope you enjoy it and find it useful. Feel free to print it off for your SENCO too.

SENCOs: A Parents' View.






You might also like to read my
Top Tips For Parents with a Child with a Learning Disability


6% My Photographs Their Stories by Graham Miller: A Book Review

On World Down Syndrome Day many projects came together around the world, designed to celebrate individuals with that extra chromosome, educate those around them and draw communities together.

The 6% exhibition opens with Eve's photo


Front cover
One project I was passionate about and very proud to be asked to attend the launch of, was the new book photographic book 6% by Graham Miller, created with support from Down's Syndrome Scotland.
To see a sample flip book, click here.

What an amazing trip I had to Edinburgh. Again I swapped my customary jeans and wellies for city attire and headed for life a little more cosmopolitan. A day of travel alone can never be underestimated when you are a full time mum. No access to a pc for blogging and nothing to do but sip tea, read in-flight magazines and listen to my massively underused iPod. It was hard work but I forced myself.

On Wednesday evening the gorgeous Heather and Sharon from Down's Syndrome Scotland took me out for supper. We chatted like old friends, put the world to rights and I was immediately pleased I had made the journey.

After a luxurious bath back at the hotel, and a final rewrite of  my speech notes for the following morning, I settled down to an early, uninterrupted night's sleep. And that is really saying something. A rare treat indeed!

Thursday morning brought new excitement. Meeting Graham Miller's entire family for breakfast in a trendy cafe in one of the artier corners of town. Sorry I could only manage 3 sparrow's bites of scrambled egg guys... the emotions were beginning to run high.
Together we all went to the gallery for the book launch.

Such an amazing experience, not least meeting the astonishing families featured withing the book and their beautiful children,  Sylvia, a powerlifter in her 50s and her trailblazing Mum,  then Pandora from DSS and Joan McAlpine, a SMP whose sister has Down's Syndrome. All of us sharing common ground, similar emotions, aims and journeys.

So here's why I think Graham's work is so powerful, has the ability to change lives. This is what I read at the launch, interspersed with pictures from the day by journalist Walter Neilson and Graham's daughter Holly Miller:


When Natty was born I was shocked, overwhelmed and mostly afraid.
Afraid to look at her even, consumed with the fear of loving her, and worse still of losing her.
Terrified of the unknown future that stretched ahead of us like a darkened tunnel.

As she lay between worlds, precious and fragile in that hospital incubator, a tiny fragment of a clinical world that didn't feel real, where we were not in control, where she did not feel as if she was our daughter, she was utterly unaware of the eclipsing stigma that was attached to that tiny extra chromosome of hers.

Parents and guests at the Summerhall Gallery, Edinburgh

I had an instant mental image of what our baby would become.
This snapshot created by my own ignorance, an internal picture composed from glimpses into unknown individuals lives that I had witnessed fleetingly.
Natty became the personification of all my preconceptions, gleaned from growing up in a wholly uninclusive 70s and the medical preofessions language that presented her to me.

They took a dimly lit and grainy Poloroid of our baby that first day.
I guessed this was because they thought she wouldn't survive.
Looking back perhaps this was the reason, perhaps it was to encourage us to look and talk about her at home, to begin to bond with her.
But I could not bear to look at the image, and it stayed hidden in an envelope in a folder of medical notes.

Cara and her father proudly stand by their photo

Only two years later, when Natty's heart surgery had finally been decreed a success, that we felt a tangible worry lift from our shoulders, did I eventually peek inside the envelope.
A sudden flashback to that shaky beginning.

But, how I did crave images when Natty was born. Real true images of what our life would become, if and how it would be different from what had gone before.

A neonatal nurse whose grown up daughter had Down's Syndrome leant us a family photo album that was to become a turning point: family days at the beach, Christmas lunch, bath time, cuddles on the sofa, all shown in dog-eared simple snaps. This was real family life.

The joy the exhabition brought to Cameron when he saw his image


There were leaflets too, from charities and support groups. I devoured the facts but then found myself simply poring over the ever important images of babies and toddlers for hours, searching for any that looked like Natty.
It sounds ridiculous now, but I wanted to know if she would resemble us. Would she be pretty even? I was hungry for reality.

When a child is born with Down's Syndrome, every member if the family has their own idea of what this means to them. Apart from the younger siblings of course. To them, it is hard to find the words to explain.
I was so acutely conscious of our eldest, confused by Mummy and Daddy's tears when her little sister entered her 2 year old world.

Why couldn't the new baby come straight home? Why did her cold mean she was not allowed to visit? Why was she forced to watch the impromptu Christening through the thick glass barrier of the SCBU window?

Twins Ruby and Darby with their parents


We had to find a way to explain to that startled 2 year old. Again we turned to pictures, in books designed for small children.

When I started Downs Side Up it was purely to prevent other families from feeling the desperation I did in those early days, with snapshots of our daily lives; the fun, the humdrum, the challenges too. To provide what I had hungrily searched for in those early days, a glimpse into a real domestic world, to 'gently change perceptions of Down's Syndrome from within hearts.'

When I stumbled on Graham's work via Twitter, I held my breath.
I saw in an instant one who's motivations were the same as mine; to portray reality, to carry others along, to challenge perceptions. bring about change, raise questions. provoke discussion, unite, celebrate difference and shatter stigma.

Graham Miller signs books with Pandora from Down's Syndrome Scotland


He thinks beyind the parameters of anything that has come before, to show that life goes on pretty much the same as it did before with Down's Syndrome, only in many ways better, with the inevitable hurdles making you a stronger person, a better parent than you ever imagined, a part of a closer family than you had before.

In truth 6% stopped me in my tracks.
The pictures cut to the very core of one's soul, tapping emotions you weren't aware of, both historic and current. I looked. I heard sobs. Theye were my own.

A picture can do all that in a split second, with the words of the families so poignany in addition, so many feelings I identified with, but has shut safely away. How liberating to have them validated by others who have lived through the same.
The title too, 6%, hammering home how rare and precious our families are.

Eve proudly holds a copy of 6%


What this book will provide for others is immeasurable. Not sentimental, nor depressing, nor neutral or outdated. It is real.
Oh, how I wish it had been around six years ago.

The love between siblings captured beautifully. Parents sharing everyday joys. Older generations included, and needed. Worries and difficulties. Fathers' voices. The laughter, the smiles, the heartache. Family togetherness.

A photo speaks to an entire family, touching grandparents and young children alike, each able to take what they need and understand from what they see. No other medium can work in this way.

A chance for me to meet the stars of the book, here with Matthew's family


We all know now that we wouldn't change our incredible children for the world, for they are our greatest teachers, and Graham has found a way to get this message across. He is a mover and a shaker indeed.
And I thank Down's Syndrome Scotland for having the foresight to encompass such an innovative work, for realising that indeed it is what families really want to see.




Of course I didn't manage to read this without the tears pricking through. But how wonderful to see many of the families crying with me. We truly had found friends for life.

You can buy Six Percent: Down's Syndrome My Photographs Their Stories from Down's Syndrome Scotland or through Beyond Words.

Further reviews can be read here.

Bloglovin'

I'm going to try to become more organised online, only because I am sick of being the ditzy person who is always chasing her blogging tail.

I'm starting by making sure I don't miss any of my favourite blog posts by slotting them all into Bloglovin'. It might take a while, but if you subscribe, pop over and say hi. This should make my Britmums SEN round-up easier to compile each month too.

Follow my blog with Bloglovin

Reader's Story by Melissa Miller



I was 12 years old when Jessica was born and like most children born in the pre-inclusion era I had no knowledge of Down’s Syndrome: disability had never entered my bubble. Upon entering the delivery room I sensed something was wrong. I could see tears in my dad’s eyes and when I looked at Jessica the first thing I noticed was that her eyes were different. On my first day back at school after Jessica’s birth I hid in the school library trying to understand what my little sister was going to be like, but the dated books with tales of ‘mongols’ and short life-spans did nothing to allay my fears. Two further events occurred that day that forever shaped my attitude towards my beautiful new sister. Having noticed I was upset, my form tutor called me aside and, after hearing my news, asked; “Are you more upset for yourself or your sister?” This may seem a rather harsh comment to make to a 12 year-old but it made me stop and think. It’s a question I have asked myself many times since, particularly on those days when I would anxiously drop a very happy Jessica at the gate of her mainstream school at a time when inclusion was a new and not always welcome concept. Later that afternoon, my friend, Maria, sat next to me in maths class and hesitantly began to talk about her little sister who had Down’s Syndrome. Then came the wonderfully comforting realisation that I was not alone.


Jessica with her sisters and nephews


From the moment she was born, Jessica was a tough little fighter. She spent the first three years of her life in and out of hospital and many times we were not sure she would make it. Worries about spots and first boyfriends seemed trivial as I would rush to the hospital every day after school, scared that my sister had suffered another setback. While I believe siblings of children with disabilities often grow up much quicker than their peers, many will develop an enormous sense of compassion that has the potential to become a force for change. My sister and the positive attitude of my parents taught me patience, compassion, and instilled in me a need to fight injustice in whatever form it may take.

As a teenager I began doing voluntary work with local disability projects but the idea that I could do so much more to champion the rights of people with disabilities had not occurred to me. Then I began working on projects with children in developing countries and witnessed firsthand the lack of support available for the most vulnerable members of society. I resolved to do everything I could to redress the inequalities that were often never questioned by wider society. I was lucky enough to work with an inspiring group of parents and professionals to set up an inclusive children’s centre in London. After 4 years there I moved to Burkina Faso to work with disabled people’s organisations where I was exposed to some of the most uplifting and inspiring yet heartbreaking and frustrating experiences of disability I have ever encountered. Over the years I have met many beautiful and inspiring children - Anita who was homeless on the streets of Quito and branded ‘loco’ by local adults and children alike; Chantel whose mother refused to send her to school because she made more money begging on the bustling roads of Ouagadougou in her wheelchair; Claire who, unable to move, was left with a bowl of water and a dog for company under the blazing sun whilst her 76 year-old grandmother tried to earn a living in the fields to feed her; and Wenlami who was found disfigured and abandoned at the door of an orphanage. These stories and many others stay with me and fuel my passion to contribute to a more loving and equal society that embraces difference.

While in Burkina I met Yacinthe who spent the first 3 years of his life lying on the floor of an orphanage following the death of his mother and a bout of meningitis. After many visits and cuddles I fell in love with the little boy who would stare up at me with big eyes questioning what I was going to do next. To fast forward the beginning of another very long story I am now mummy to Yacinthe and his little brother Elijah and Jessica is a proud and loving aunty – just as long as they don’t touch her computer games or mess with her hair!

Heart Radio Interview

Little Interview with Heart Radio yesterday as part of our involvement in World Down Syndrome Day 2013


Reader's Guest Post by my birth companion Katinka Soetens


This guest post is so very dear to me. It is written by someone I respect enormously. Katinka is the most beautiful woman who Bob and I were blessed to have been able to invite to be present at the births of both Mia and Natalia. 


Both births had their surprises; Mia was an undiagnosed breech until the last moment that we had no choice but to deliver naturally and Natty was born at home in a calm, planned way. Of course she brought with her her own surprises, her blue stillness being what I recall most vividly.
I have asked Katinka over the years to tell me what she can about that day. How she helped us through the shock, I always wondered what she knew and witnessed in the lead up to Natty's diagnosis being delivered many hours later in the hospital.

Here she writes so lovingly about that time. I cannot read this without crying, and we thank her for helping to put us on the right path in those early few hours. H x



Sometimes life brings you the opportunity to really feel what it is to surrender and trust.
Not from a place of fear, but from a deep knowing that the perfection of the soul’s journey in this life follows a greater plan then our day to day perception usually gives us the view of. Once felt and experienced, it becomes obvious that all there is to do, is to be fully present. To trust and to let go of attachment to outcome, so that we act as is needed in each moment, in flow with this greater plan.

Natalia’s birth was one of these magic opportunities for me.
We as people are all so lucky to have the ability to experience being a part of a community, part of a wider “family”, sometimes brought together by what seems like chance, but which, when it really matters in the moments when life is about as real as it gets, gives unquestionable support and opens in us all the chance to grow as human beings.

Hayley had asked me to be her doula for the birth of her second baby, a planned home birth, after having been with her and Bob at the birth of their first beautiful daughter Mia. I was delighted and honoured to do so. Over the last months of pregnancy we’d worked in birth preparation classes, held in the homes of the small group of women seeking natural birth awareness and preparation, and a close bond had begun to form between us all. We’d shared fears and joys, breathing and stretching exercises, helped each other to relax and drop into the deeper listening to the body that is part of this women’s work. Hayley and myself had been in regular communication in the weeks leading up to the birth, all midwife checks were fine and all seemed well.

So it was that the call came, that 5th December night, (St. Nicolas’, patron saint of children, and evening of gifts for all Dutch people) a new life was about to come into the world, as Hayley was in labour.

As Doula and Natural Active Birth teacher I had been in the very fortunate position for many years to witness and hold space for the sacred process that is giving birth.
Not only is the natural physiological and emotional process of labour an opening to life manifesting through us into being, a place where we get to remember our essence as the force of nature and creation, but it offers the change to experience how, in the depth of our greatest vulnerability we also get to touch our greatest power. The illusion of the separation or dualism between the two can fall away. Helpless as we may feel to alter the flow of the birth process, despite all best laid plans and preparation, when the inevitable ‘it bit’ moment of labour comes, most woman, especially when well supported, find a surrender to what is happening and the trust to go within and be the power of life itself. It is both humbling and empowering in equal measures.

Part of my preparation for attending birth would be to pray to Goddess to guide me and protect mother and baby, and call into myself that part of me which is ‘midwife’, ‘wise woman who is with’. As usual, I felt her arrive in my body, in my hands, as the voice which knows what to do or say, while I was driving over to Hayley and Bob’s home that evening.

There was a fine flow to the birth dance, the house warm and nest like, Bob caring and looking after us, different birth spaces prepared and family and midwife on standby. At one stage Hayley was restless, a disquiet as if something needed to happen or was not right. Not knowing what to do in that moment, I prayed and the message I got was that all was as it should be and all that was needed from me was to hold and love Hayley.

So when Natalia was born a few hours later in the bathroom, blue and beautiful, and it was obvious that all was not as we had hoped, this was all there was to do for the Doula: to love and hold, to trust the unfolding journey. To hold for Bob, somehow, bravely, out in the cold early morning light in shorts and t-shirt, waiting to guide the ambulance into the drive. For the panicking midwife trying to get that baby going, who needed the support of the not yet arrived 2nd midwife. For Hayley, courageous amazing woman, on the threshold of a life-change none of us had quite fathomed yet, and for this new baby, fighting to be in that little body. How do you help, love or hold in a situation like that?

Tuning in to you, little Natalia, in that moment when you were still between the worlds, you felt so calm, sure of your path, so strong, so perfect, and I knew that all would be well that day, despite the birth-scene we were all a part of in that moment. You gave me a sense of peace that I was able to hold in my body and for those around me.

Later, when the 2nd midwife, who was a friend of mine having been my own midwife at the birth of my children, exchanged glances with me on the way down to the cars and ambulances, I knew she too suspected the truth behind Natalia’s blue arrival into the world, and she too knew that all there was to do was to love and hold, to surrender to the perfection of this family’s story.

And later still, when, after what felt like waiting for an unnecessary age in Treliske hospital, the clumsy  doctor gave the news we were all by now expecting: Natalia was born with Down’s syndrome, the almost unbearable privilege of being allowed to be present to the deep soul journey into love this news initiated in both Hayley and Bob. What a gift you were from the beginning Natalia!

If you are asked to be a part of the life journey of someone when it matters, especially around the times of initiation, which birth and death are the most prominent of, don’t shy away, don’t allow your own fear to deprive you of a perfect opportunity. You do not have to know what to do or say, as long as you are authentic in your expression of that not knowing.  All you really need is the commitment to surrender, and be with, to stay present and to love, no matter what. No need for clever planned programs or road maps, anything can and will happen along the way. You may feel lost, it will feel too big, and yes, yes! You can do this in your own unique way. And what amazing treasure and lessons the gifts of taking the journey are. You will be changed for ever!

The rest of the story is history as they say. Throughout it all Natalia and her family have given me such unbelievable teachings on living love and surrendering to the perfection of our soul’s journey, I am for ever grateful for the gift of knowing them.
Thank you Hayley and Bob, Natalia and Mia, for asking me to be part of your special birth journey, part of our lives entwining. Thank you for all the love you make shine in the word and for changing perceptions of what perfection might be or look like where ever you go.

Love and Blessings
Katinka

6% by Graham Miller launches on #WDSAD2013


I have dropped tiny hints over the past weeks, unable to really say much while the project was under wraps, but too excited to keep it all in. Little flurries of anticipation kept escaping the bag in which they were contained. Finally I am allowed to tell you of an amazing project I have been asked to help launch.

Every once in a while you stumble on some work that really resonates with you, really inspires, something very different and unique in its essence. Such work was the black and white documentary photography by Graham Miller who I stumbled across on Twitter. He focusses solely on the lives of those who have disabilities and his work is fascinating, eye-opening, positive and true. It is full of emotion and life. I think you will be as captivated as I was by Photohonesty.



Graham's latest project is one which is very close to my heart for he has captured babies, children, young people and adults with Down's Syndrome on film. He has then matched their words, or those of their parents with the images, to astonishingly powerful effect.

I have been lucky enough to have see the book in its entirety. I knew it would be emotional, so I waited for a quiet moment when I could give it my full attention. That took nearly a week and I think Graham was wondering if indeed I was bothered about reviewing his project at all, but I'm glad I did it that way, for it stopped me in my tracks. I looked, took a breath, a tear, a quiet sob, and many smiles, for Graham has managed to encapsulate all the feelings I have as a parent of a little girl with Down's Syndrome.

There's worry, happiness, pride, a sense of having learnt so much on our journey, and also a sense of dispair and sadness at the cold hard fact that most of society just don't understand what having a child with Down's Syndrome means. Afraid, ignorant and fuelled by fear, 91% of parents expecting babies with Down's Syndrome opt for a termination. Other babies will not be strong enough to survive the pregnancy, and so, that leaves a haunting figure of around 6% who will make it into this world.


The data on outcome show that after the prenatal diagnosis of Downs Syndrome 91% of affected pregnancies are terminated and 9% are continued. Some of the continued pregnancies miscarry naturally, some end as still births, and approximately 6% of prenatal diagnosis are live births’.
Source: The National Down Cytogenetic Register for England and Wales: 2010 Annual Report

This became the title of Graham's book: 6%
Down Syndrome My photographs Their Stories

It will be launched on 21st of March 2013 to coincide with World Down's Syndrome Day and Downs Syndrome Scotland are backing the venture. I am bursting with pride to have been asked to speak at that event, in an art gallery in Edinburgh.

Please take a moment to have a look at the preview of the book on the Photohonesty website (Link below). You can pre-order copies there, or offer help with printing and distribution. I am certain this will become an essential book in many of our houses, equally inspiring for new parents and those of us who are a little further along the journey, as well as professionals and the public at large.

It certainly celebrates our wonderful children and what they bring to our families whilst acknowledging and validating the period of adjustment that many families go through initially.

There you will find a mini version with pages you can turn. 


Reader's Guest Post - a big sister

I simply love this post. It's written by an older sibling and her little brother sounds just like Natty! It really put a smile on my face. And what a gorgeous picture!


Toni and Logan



  • I have been enjoying reading your guest posts for a while now and been thinknig about writing my own. I am not much of a writer and find it difficult to put what i want into the perfect words, however with it being a special week this week i am going to go for it and introduce to you all a little buddy of mine. 

    I am writing about my younger brother and best friend..nothing more,nothing less it wont be fancy or poetic just honest and true.
    So almost 10 years ago Logan came into our lives,the youngest of 6 siblings he was always going to be spoilt never mind the fact he has that something special(yes he just happens to have Down's Syndrome). 
    I believe our family changed for the better since Logan became a part of it, he was sent to look after us in ways i dont really know how to explain.


    10 years on and he is an incredible little boy,because he is Logan,not because he has Down's Syndrome..thats just a small part of my buddy,i will fill you in on the rest...
    Logan has many interests, he loves watching DVDs and collecting the figures/teddies that go with a film and acting it out the whole way through(mum has to buy films several times as they run their course), he loves going to the park and as he gets older thinks he can now "go by himself" at any time of day/night he hasnt quite got it that parks are not suitable places to be in the dark!! 

    He loves the water.Bath,sea,pool..give him the space and he is free for hours and hours.Logan has just learnt to swim with arm bands,his favourite move is dipping his face in and out of the water as he goes!
    Logan has just begun a new hobby of football..he refused to go at first until he was alllowed to wear one of his brothers old football shirts with new football shoes of course!

    Logan loves to play jokes and tricks...be warned if you ever enter into a game of hide and seek.(you will need to spare a day) He likes to tell and recieve secrets but will never keep them,yes he will tell mum hes brought her a cup with his face on it for her birthday!
    Logan has a huge imagination and will turn the most boring hour into something ridiculously amusing...you will be at home one moment and then laying on the "beach" the next (sleeping bag,trunks,sunglasses and even suncream all provided courtesy of logan)

    As his independence grows He loves to "help you" with anything he can, making his own drinks,cooking,cleaning looking after you when ill. This one is probably his all time best, he thinks its fantastic when one of us is illl and you will not find more sympathy than from Logan!! However he has also learnt how to play ill and enjoys pretending to get a day off school because he is "hot, tummy hurt,poorly head" oh and the magic cure is without a doubt always a hot water bottle!!!

    Logan loves to share his love,doesnt matter how many times he has told you he will tell you again! he also knows how to bargain with this for his own advantage..He NEVER sleeps the whole night through and my mum will say with honesty since he was born she has not had a full nights sleep. That said she loves hearing his footsteps plodding along the landing and creeping into her at silly o'clock!

    Logan has many friends and has recently discovered face time on his i-pad,we quickly learnt to delete any numbers of friends he has spoken to and not keep them saved as that household will also not sleep!! One of his best is a cuddly toy dog,logan has had this for years and still loves him,he named him DOG,that is his name and dont forget it.
    I could talk forever about Logan and how he has become my little best friend over the years but i have probably bored you already,i just wanted to give you an insight into my little brothers world. he has changed us and helped us to become better people.We laugh more,shout less,give in when we shouldn't,and keep the big kids inside us for longer.

    My mum is more amazing than she already was..she embarked on an incredible journey after giving birth to Logan(in the hosp car park no less...of course he had to make an entrance) one which they continue to travel..together they are destined for greatness and wrinkles im sure.

    Their next big adventure is home-schooling, teaching eachother great lessons along the way. 



    So Logan, my Buddy thankyou for choosing us. 
    Happy awareness week to all..and an amazing WDSD 2013!! 



    Your big sister Bones xx