Downs Side Up

Reach for your Potential

2012-05-20T22:28:00.001+01:00

Living Life to the Full

2012-05-17T14:41:00.000+01:00

This is the article I wrote with professionals working with those with Learning Disabilities in mind. It appears in the May '12 issue of Learning Disability Practice.

Living Life To The Full

Hayley Goleniowska was devastated to learn her baby had Down's Syndrome, but Natty is reaching her potential.

I am the proud Mother of 2 gorgeous, confident, funny and popular girls. The youngest, Natty, also has Down’s Syndrome.

All I could think when she was born was ‘This isn’t what I signed up for. This is not what I want.’ But of course, I had no idea what ‘this’ really was.

As Natty’s 5^th birthday approached, my thoughts turned to the crisp, sun-blessed December days just before her arrival when Mia and I planted bulbs together, enjoying every moment of Mummy and first-born alone time that would never be repeated in quite the same way.

This was the time before our lives changed forever, the blissfully ignorant, arrogantly complacent time before we understood what life was really all about. When we shrugged off a 1/297 nuchal fold chance of having a baby with Down’s Syndrome as ‘not bad for my age’, (35) and clung to the notion that a healthy, clean-living, vitamin-taking woman would, of course, be expecting another healthy baby.

She came early, as I felt she would. 2 weeks to be precise, typical for babies with Down’s Syndrome. The natural home birth was calm and straightforward. But a small, silent, blue baby was born, all in one easy movement.

What followed is frozen in time.

The look of desperation on the midwife’s face while my husband waited in shorts in a freezing lane for the ambulance.

Jovial paramedics administering oxygen and helping me to the ambulance.

The midwife repeatedly telling me how beautiful she was as I held the oxygen to her face, a face I could not warm to, could not recognise as being my own baby’s.

Hindsight brings sharply into focus that all these professionals instantly knew that Natty had Down’s Syndrome, but none of them could tell us.

Specialist Care

On arrival at the hospital, our baby was quickly taken from us to SCBU and we were ushered into a side room. I insisted that my husband stay at the baby’s side while staff worked on her. Bob still cannot talk to me about exactly what he witnessed and felt during the next 4 hours, save that on several occasions he can recall the code ‘DS’ being used.

But a strange thing happens when you are faced with your worst nightmare. You dare not welcome it in. You dare not let your brain begin to work out that DS of course means Down’s Syndrome. You absolutely will not let your head formulate a question to ask what is wrong, because you are terrified of the answer. If you don’t ask, it won’t happen.

I was given no explanation of what was happening and I began to feel that I was being avoided. The panic rose.

Finally my husband returned with a smartly-dressed consultant who delivered his pre-diagnosis of Down’s Syndrome. No-one will ever fondly remember the delivery of unexpected news like this, but it felt too formal and too distant. Too much, too soon and overwhelmingly tragic, akin to . Talk of leaflets, a poem about Holland and meeting a nurse with a daughter with Down’s, and the addage that ‘some of them even go to mainstream school.’ Our midwife cried with us.

I wanted to scream at him, make him and what he was saying vanish, but I could not speak. He asked me if I had suspected. I nodded. My core being had known all along. And all of this was done while ‘she’ lay in a distant incubator in SCUBU.

I now understand the angst of those around me too, for medical professionals are also only human. But looking back, a gentle word of warning from a familiar friendly face might have taken the sting out of the thunderbolt.

She was our beautiful but vulnerable daughter first, with her fabulous, exciting life ahead of he. But telling us she had Down’s Syndrome amid tears and ‘sorries’ while she was out of sight and reach, meant that she became Downs’ Syndrome Personified. My ignorance made her a frightening sum of all my stereotypes based on outdated glimpses into the lives of strangers with the condition.

Key medical ‘angels then came to the fore. The people whose faces and voices remain, whose influences are still felt in our hearts, yet whose names are long forgotten. Those who made us decide that our lives were far from over and that we would make certain both girls reached their full potential.

The gently persuasive Sister who encouraged us to gradually look at, then touch and finally hold Natty.

The kind nurse with a daughter with Down’s Syndrome willing to share a family photo album with us.

The Junior Doctor who announced that he just knew we would be ambassadors for children like Natty one day.

The Midwife who wisely told me that my baby need my love whether she lived or died.

The GP, whose grandson has Down’s Syndrome. A no-nonsense man who welcomed her into his arms and coined her nickname Natty.

Knowing Health Visitor no.2 (Insensitive no.1 was quickly bypassed) who had a child with a disability herself, who just ‘got it’.

The calm breastfeeding specialist who guided us through 3 tube-fed, milk-expressing months until Natty finally succeeded for herself.

Natty won our hearts, grew stronger, survived heart surgery and flourished, as her father always predicted. Her doting sister develped into a senitive, caring, intuitive young lady, due to, not in spite of, her disability. My blog[1] offers support and encouragement to professionals and parents alike and Natty is an ambassador for Down’s Syndrome in her own right.

She lives and loves life to the full and shouts out that Down’s Syndrome is beautiful and not to be feared. It is different, unexpected, but never bad news.

[1] www.downssideup.com

Hayley Goleniowska is a full time mother and part time blogger.

The Power of A Song

2012-05-13T22:26:00.001+01:00

I recently began thinking about a song by Depeche Mode that was on a compilation CD in my car at the time I was pregnant with Natty. Just another track, probably one I skipped over a hundred times to get to my favourite.

After her birth the very same song suddenly became full of meaning, so hugely significant it could have been written just for us. It seemed to be speaking to the family of a child who was born vulnerable and spending her early, precious, irreplaceable weeks in a Neo-Natal unit. I actually listened for the first time.

It summed up the guilt we felt at our shock after her arrival, the sorrow that cut through us as we watched her being subjected to uncomfortable procedures, the pain of the empty crib at home where she should have been sleeping, the fear that she would grow up remembering the aloneness in the incubator, that overriding feeling all parents have that they would do anything at all to make things better.

I used listen to it over and over during the 30 minute journeys of solitude to and from the hospital each day, sometimes twice. Theses car journeys were a bubble of thinking time between home, a place we were desperately trying to keep 'normal' for Mia, and SCBU with it's routines and clinical artificiality where we were protected from the outside world by the staff, guided along under their umbrella of care, but where our baby still didn't quite feel our own.

When I listen now, the memories come flooding back and it still has the power to bring a tear to my eye. But now at least I can see what the masterplan was... and Natty has room in her heart for everyone!

Precious by Depeche Mode

Precious and fragile things
Need special handling
My God what have we done to You?

We always try to share
The tenderest of care
Now look what we have put You through...

Angels with silver wings
Shouldn't know suffering
I wish I could take the pain for You

If God has a master plan
That only He understands
I hope it's Your eyes He's seeing through

I pray You learn to trust
Have faith in both of us
And keep room in Your heart for two

Here's a link to the song on Spotify if you subscribe.
Precious - Depeche Mode

Natty Misses her Big Sister Mia

2012-05-11T16:00:00.000+01:00

Strong sisterly bond, right from the start

When I was warm and safe inside Mummy's tummy, Mia's was the voice I heard the most.

More distant than Mummy's, but always there in the background. Sometimes sing-songing, sometimes loud, a tantrum, often laughing, whining or crying, asking questions, talking to Mummy or Daddy, reading a book, whispering to Huggy her teddy. I often heard music too, shakers, xylophone, castinets, the same song over and over 'Girl, Put Your Records On', or a tune from TV programmes that I too now enjoy.

My favourite times were when she put her mouth close to my warm tummy house, and whispered straight to me, into my ear.

She told me she loved me, even before she saw me.

She would tell me what she was eating for tea, and Mummy would pretend I was clapping her when she ate her vegetables. I was doing exactly that of course.
Then she would hug me by rubbing Mummy's tummy. Tickly.

When I was born, I was a bit tired and not very well. Mia's voice was the only one I could muster the energy to turn my head for. I needed to open my eyes to see her, my beautiful sister who had loved me from the beginning.

Since then, we have been together every single day. Not all of everyday, but always a part of it. Even when I was having my heart fixed, she came to be by my side.

She helps me. Sometimes she gets me dressed or takes me to wash my hands. She reads me stories, and draws amazing pictures. I annoy her at times, but I don't really mean it. Then she walks away from me and I cry. We always cuddle on the sofa afterwards though.

I help her too. I hug her when she is sad. I share my dinner with her. I make her giggle with my silly faces and funny noises. I show her little things she has missed, like a daisy in the grass of a bird in a tree. Mia says she wants me to live with her when we are grown up. That might be fun, but I might have others plans.

Today, Mia isn't here.

I ate my tea with Mummy and Daddy but she wasn't there to kick under the table.

I had my bath and she wasn't there to splash me. She didn't wrap me in a fluffy towel afterwards.

She wasn't around to bounce on the bed in our pyjamas which Mummy hates.

I wondered if she was playing hide and seek, but she wasn't in any of our best hiding places.

I kept asking Mummy where she was.

Mummy said she was on a little school holiday. But she surely can't go on holiday without the rest of us! I asked Mummy if Mia was on a beach with sand. Mummy laughed and said no. So where is Mia? Mummy said she was in a big place like a school with all her friends and teachers. Why? (Handily, they have just taught me these question words, so I was putting them to good use.) Mummy said she was learning lots of things on a school trip and that she would be home soon. I bit like when my class visited a farm, only her class were sleeping away from home.

I cried. I cried really hard, and just to make sure Mummy understood, I said that I was sad, that I was crying and that I was missing Mia. I wanted my sister to kiss me goodnight. I wanted to know she was in bed nearby me. Mummy put Mia's nightlight on so it seemed as if she was there in bed, and gave me one of her teddies to hold while I slept. It smelt of her but it wasn't the same. Mummy held me until I fell asleep, tired from crying. It was nice, but tonight, I wanted my sister to kiss me goodnight more than anything else in the world.

A Doula's Love

2012-05-08T23:08:00.000+01:00

Doula

From Wikipedia, the free encyclopedia

For other uses, see Doula (disambiguation).

A doula (pronounced "doó la", also known as a labour coach and originating from the Ancient Greek word

δούλη meaning female servant or slave) is a nonmedical person who assists a woman before, during or after

childbirth, as well as her partner and/or family by providing information, physical assistance and emotional support.^[1]

The provision of continuous support during labour by doulas (as well as nurses, family or friends) is associated

with improved maternal and foetal health and a variety of other benefits.

My husband and I had the great fortune to have a wonderful doula present at the births of both our precious daughters. I can often be heard to say that I 'couldn't have done either birth without her'... well not in the same way, that's for sure.

Katinka exuded love throughout the labours, birth and beyond, not just for me but for Bob as well. She massaged my pains for what must have been hours, suggested movements to help with optimum baby positioning, ran baths, administered homeopathy, joined in with my birthing cries, encouraged Bob to do the same, sent him on errands when she sensed I needed to be alone, supported early breast feeding and, crucially after Natty's birth, was the person who really remained steadfast in the conviction that I would cope, that I would bond with her...

I have asked Katinka to write an account of what happened when Natalia Hope entered our world, but in the meantime I wanted to share some of her love with you. It comes in the form of the words she wrote for Natalia on the occasion of her Christening/naming ceremony garden party.

Katinka wrote these words in a beautiful book, and read them to our daughter in our garden, in front of close friends and family, on a beautiful sunny summer's day in 2007. Reading them back now, how apt they are. And how much we can all learn from them!

Dear Natalia

Our blessings to you lovely one, how lucky we are to have you in our lives.

We bring you tokens of the elements, as they combine in you in their unique way. May they bless, guide and protect you always.

For Air - A feather and sparkly incense, the blessings of stillness and song, of the deep memories and the connection of your ancestors, and of inspiration, imagination and great ideas, and the breath of connection between all things and beings.

For Fire - A candle, a sparkler, the blessings of fun, friendship, courage, dance, love and new beginnings. Of the fires of stars to light your nights and fires of Sun to warm your days. Fire of your brave heart to guide your way and fires of the deep earth to hold you safe.

For Water - Two shells, one the spiral of life, one the challice of healing, the blessing of healing and compassion, of all emotions and the balance between them, of being one with the flow of life's energies, of intuition and dancing in the moonlight.

For Earth - A crystal and a little dragon, for grounding and manifestation, for walking in balance on the Earth, for abundance, for family and friends and great food. For following your own unique path as you journey through your life. For connection to plants and animals and for the blessings of the hidden magical creatures that surround you.

And finally this book, for you to draw, paint, write, dream and create in, representing the fifth element Spirit/Space, with all the blessings these will bring you.

Wonderful light being Natalia, we all love you and give you a big hug, cuddles and kisses.

From your friends

Katinka and family

xxxx

Friends, food, art and dancing. Now that's what life is all about!

A Godmother's Turn to Speak

2012-04-30T14:26:00.000+01:00

The following words are written by Natalia's Godmother, my former language teacher boss, close friend and a lady for whom I have great respect. When Natty was born she had a no-nonsense attitude of, 'that is that, and that is God's will. We will all be here to help you.' Help she has, for although she is a busy lady, she has always believed in our abilities to do the best for Natty, and she is always there in a crisis, dropping everything to help out with an emergency hospital stay if Bob is away. On the occasion of Natty's Christening party, I will always recall her saying to me, 'None of us really knows how strong we can be, until we are forced to be strong.' Wise words indeed.

Natty in the arms of her Godmother.

"I will never forget the day Natalia was born.

Hayley and Robert asked me to go to their house and stay with Mia as Hayley was about to go into labour. It was going to be a home birth, so someone had to look after Mia, then aged 3.

I spent the evening sleeping in Mia's room. Come 7 O'clock in the morning, Hayley was still in labour, so I decided to take Mia home with me.

We played all day and waited for news. It was late in coming and I was getting increasingly anxious. When Robert finally phoned he said that Hayley was fine, the baby had been born, but that she had Downs...

The rest is the inspiring story of anxiety, uncertainty, fear, hard work, trust, faith and finally intense love and care for human life and dignity that the readers of this blog have come to know and admire. I have witnessed closely the degree of self-education Hayley and Robert have had to undertake in order to nurture Natalia in the best possible way.

Recently, after I had not seen Natalia for quite some time, I spent an afternoon with her - baby sitting basically, while Hayley took Mia out for the afternoon. We played, did art work, read books and watched films. It struck me afterwards that I was completely unaware I was dealing with a 'special needs' child. I had forgotten about her disability completely.

She was reading school books intended for her age, knew which videos she wanted to watch, knew how to operate the computer to play them, expressed her likes and dislikes, and in short was a child like any other, albeit one who was in some ways a couple of years younger than her chronological age.

She related to me and accepted me but would not hesitate to exert her will. I believe this is because Hayley and Bob, whilst providing for her physical and educational needs in every way, actually treat her in the same way as her sister around the house. They did not lower their standards in terms of discipline and social etiquette. She was delivering what had been expected of her. I was struck by this. It affected me greatly. "

A Little Light-Hearted Blog-Off

2012-04-29T22:44:00.000+01:00

How this Blog Came to Fruition
A recent perusal of my Twitter feed threw up the following comment; "My son is better than yours!" Now, I'm no boy racer, but there's nothing like a comment like that to catch one's eye.
I replied "Thank goodness I've got girls."
His retort? "My son is better than your girls too!"
OK, so the gauntlet had been well and truely tossed down. I could not refuse his challenge.
Next step, actually read his blog. So I clicked the link to a lovely, lighthearted blog, written by a very proud Dad of a beautiful (typically developing) 9 month old boy called Dylan.

A Small Note Before We Begin
I am not one too boast about either of my children, their capabilities or achievements. I am immensely proud of both of them, but I see wonder and potential in all children around me. I support and encourage families with children who have Down's Syndrome, all of whom are unique individuals.
So, I write this for all parents of a child with a disability of additional need, in order to show the world that our kids are 100% perfect too...

Natty in a Nutshell

Special Talents and Behaviour

As just a spec of a person-to-be, Natty was lucky/clever enough to pick parents who chose to allow her to actually have a chance at life. With a 90% termination rate for babies like her, that's really quite a talent. (Thank you for choosing us Natty!)

Natty has been a fighter and a winner from birth, working extra hard to achieve everything she is and does. She overcame dangerously low SATS, and 2 holes in her heart. She magically closed one by herself, then survived heart surgery to correct the other. Oh, and was blowing raspberries at the surgeon within hours... She has bravely fought off pneumonia and a raft of upper respiratory infections that have caused hospitalisation, given more blood samples that most adults can imagine in their lifetimes, always with a smile and a hug for those helping her.

Natty is one of life's ice-breakers and more importantly an ambassador. She enters a room and people are immediately engaged, and focussed on her. She melts even the hardest of hearts, smashes stereotypes and stamps all over people's preconceptions of Down's Syndrome, usually with a rendition of a Mary Poppins Song followed by a fake burp and a gift of an imaginary chocolate cake.

She is also highly tuned to the feelings of others. Her radar is immediately activated if she hears another child cry, and her work is not done until they are comforted.

She is also attuned to the delicate beauties of the world that we all miss. We smile each time she stops to sniff a humble daisy, exclaiming 'ooooh, pretty!' for example. How much we all miss around us. We all need a Natty to remind us.

But by far and away the most import trait that Natty has is the ability to make people reasses their priorities in life. Since her arrival, all who know her have realised that these priorities are friendship, love, great food, music, dance and the ability to live in the moment and adore that moment exclusively before moving on. Nothing else really matters.

Appearance

We all know that the most precious gifts come in tiny packages, and Natty is that. Petite and cute, with delicate features that would befit the most perfect doll. Doe eyes, long lashes, perfect skin. She has a kind of endearing, angelic beauty that radiates from her innocence within. It is a new yet ancient, true beauty, and one that is challenging the world to reasses what it sees around it.

Natty is one of the first children with Down's Syndrome in the world to become a model. She is working for clothing companies and holiday companies, promoting their brands. People are sitting up and looking and saying 'Yes! It's about time we saw the face of disability in this light!' She is living proof that beauty takes many forms.

Her story has clearly touched a nerve, because it has been featured in The Sun, The Mail Online, Bella Magazine, AOL, The Paediatric Nursing Journal, BBC Radio and, of course, she was invited on ITV's Daybreak. Need I say more? She's bloomin' gorgeous.

Physical Development

Natty worked at least 100% harder than her sister to learnt to sit, crawl and walk. Physio, daily exercise and additional support were built into her routine in a fun way. Let me tell you, the pride when she reasched those milestones is unmatchable, the feeling that they have done what you feared they may never be able to do, indescribable.

Natty has worked even harder at learning to talk and read. Our house is adorned with flashcards, visual timetables and special books that we dip into at every opportunity. She speaks with clarity and fabulous intonation, but only after constant practice, something her easily chattering peers would find hard to compute.

Value for Money

Natty is priceless!

Overall Rating

As you can see Natty is 100% perfect in every way.

But, Dylan's Dad, my child has more chromosomes than yours!

I have enjoyed our duell.

Read the opposing blog at

http://thedaddyadventure.blogspot.co.uk/

Over to the unbiased adjudicators.....

A Few Questions for Natty

2012-04-28T16:48:00.002+01:00

Mike, Natty's Mighty Steed!

Here's Natty, talking about a few of her favourite things, in her own inimitable way.

Actually, less 'chatting' than is ususal, more 'rocking Val Doonican style', but a cute little interview none the less. We hope you enjoy!

The Significance of the Birthday Party Invite

2012-04-22T21:36:00.000+01:00

The Party Invitation

Children's birthday parties...

"Noise. Other people's kids. Sky high little ones on a sugar-fuelled trajectory headed for mahem and destruction. A couple of hours eaten into your precious family weekend. Small talk with other parents you barely know. All those scary germs lurking in the ball pit that are bound to make your child ill. The stress of hoping your child behaves better than the worst of them."

That may be what some people think when their children are invited to a classmate's birthday party. Certainly when they are before the age of the 'drop and pick up later' phase.

Here's our story...

Last week, when I dropped Natty at school, her friend Bella bounced up to me, beaming from ear to ear and proudly holding a large pink envelope aloft. On the front, it simply said 'Natty', written in her own 5 year old hand. Natty and I took the envelope and I asked what it was. Bella replied, "It's a birthday invitation." From what I recall, there was much whooping and hugging all round.

You see, Natty attends mainstream school. And Bella is a gorgeous, bright, funny, confident, 'typically developing' girl in her class.

Immediately the birthday invite became a symbol to me.

Today we attended the party, and what a fabulous party it was. There were games and a disco and a soft play bit and a buffet Nigella would be proud of, tears, tantrums, party bags and even a glass of bubbles for the mums!

But this is not the overriding, enduring image of the day for me.

I am sitting here with an picture in my head of Natty right at the front, joining in the game of musical statues. Of her climbing through the soft play area without me on her tail. Of her going up to the buffet with a plate in one hand and her friend Fin holding the other (he also happens not to have Down's Syndrome). Of her saying thank you to the parents of her host before she left.

What I saw today was a little girl who was not completely identical to her peers, perhaps because of her speech, perhaps because she is head and shoulders shorter than them, but a little girl who took part in all the same activities and felt part of the group. Not for one minute did I observe an outsider. Not for one minute did I see her stand apart. And not for one minute did I see her classmates treat her with anything but love and respect.

I did observe that other little 5 year olds instinctively understand that she needs a little more time, or help, or translation. But to them, this was just part of the party, part of daily life with Natty in their midst.

And suddenly I realised at once, that the full power of inclusion is a 2-way thing. It's not just about our kids with special needs being accepted. It's about a new generation growing up with others who are 'different' alongside them, learning acceptance. It about all of us looking out for each other. Our children give back something too. Every time someone cried today, Natty's radar was activated and she was by their side in seconds, comforting. And they welcomed, wanted that comfort.

So, for me that party invite was a symbol of true inclusion. I hope they never stop coming...

The Secret Ingredient is Hope

2012-04-20T09:35:00.000+01:00

A friend gave Natty this figurine
when she was born

I had never really thought too long and hard about the reasons behind the names we chose to give our girls, until Downs Side Up found itself in the public eye.

We had a rough shortlist of names we liked during both pregnancies, and then waited to meet our babies before deciding which names suited them. As a parent you concentrate on the child, their personality, their needs, breastfeeding, medical issues, (sleep!) ...and then suddenly, one day, hey presto, they just 'are' the name you gave them.

Of course when Natalia was born, the medical complications were considerable, and we found ourself in a deep dark place of shock as her Down's Syndrome had not been diagnosed antenatally. She was Christened at 3 days old (or so, this time is a numb blur) and we quickly picked a name before that occasion. Her due date was Christmas Eve and, despite being born slightly early, we chose a name that comes from the root 'natale' meaning 'birth' and 'Christmas'. Natalia it was then. The first ingredient.

To be honest, we feared she would die at that time. So the middle name Hope was added to the mix.

Some weeks later, when our little, frail new bundle was allowed home, a local GP requested to be her doctor, as his Grandson also boasts an extra chromosome. I walked into his surgery for the first time that cold January morning with the tiny baby I still could not look at without feeling overwhelmed and afraid. He simply beamed at us and confidently said, "right, now let me hold this beautiful baby I've heard all about." As I passed her into his arms, he looked at her kindly, smiled and softly said, "Hello Natty."

The nickname was coined. It found her. It suited her, and let's face it, it's a lot easier to get her gums around than 'Natalia' (what were we thinking?). It's also fairly unique, save for a great Reggae artist of the same name. I like the Caribbean overtones, it's catchiness. It's a happy, jolly onomatopoeic kind of word that captures her essence. Short, but very sweet, and always hand in hand with Hope.

Of course we knew all this history, our own private, fond, family nickname genisis, born of affection. However, an online newspaper article reader, without giving her cutting comment a second thought, piped up "Pretty little model, but why did her parents give her such an ugly name. It sounds like an insect!" Most tellingly, and ironically, the critic kept herself (just a hunch) anonymous!

But always there was Hope. Was it secondary, a middle name given as an after thought? No. It was at the very core, the vital ingredient. 'Natty' is the fun, first impression, the outer packaging. 'Hope' is what she is made of inside, the delectable soft centre. What lasts and endures, and what radiates out to those around her.

And once you choose hope, anything is possible.

Natty, 5 - Model with Down's Syndrome

2012-04-16T21:34:00.000+01:00

Never lose an opportunity of seeing anything that is beautiful,

for beauty is God's handwriting --

a wayside sacrament.
Welcome it in every fair face, in every fair sky, in every flower,

and thank God for it as a cup of blessing.
- Ralph Waldo Emerson

Natty models for Frugi

When I began writing Downs Side Up some 6 months ago, my motivation was partly to show the world that children with Down's Syndrome are utterly beautiful, certainly not to be feared and deserve a place in the heart of our communities, where they can live in a fully integrated way and give so much back to those around them. I wanted to uplift and inspire new parents, show them the possibilities, give them courage.

I began thinking of a many-pronged approach to reach this aim and the blog became the hub or core from which all other threads emerged. Then came Downs Side Up on Facebook, more recently we've been getting our voice heard on Twitter @downssideup and laterly on Pinterest. It has been amazing to meet so many like-minded, inspirational parents here, but my thoughts soon turned to how I could preach to those who were not already converted.

I started thinking that our childrens' beautiful faces should be visible in everyone's lives, popping up in catalogues, magazines, on TV, ads even, another facet of globally accepted beauty.
I started writing to companies and model agencies, 2 or 3 a night every night, asking for their support. Several were very supportive but politely said Natty was not 'chocolate box perfect' enough. Others ignored my emails completely. But a special few replied immediately with an open-armed 'yes'. Frugi organic kids clothing was the first, the other was Scott Dunn Travel and then came Jojo Maman Bebe, who coincidentally use several models with Down's Syndrome and are proud to be inclusive employers also.

Modelling wouldn't be everyone's cup of tea, but little show-off Natty is a natural in front of the camera. At our first Frugi shoot she began posing before we had even changed her out of her school uniform! Highlights of the afternoon were a vigorous game of kiss-chase with a male 3yr old model, (Natty was to be heard called 'come here and kiss me now!'), stroking the photographer's stubbly beard (No, that wasn't me. Honestly.), and dancing with a cardboard owl (what a hoot!).

After this, national paper The Sun, online publications such as The Mail Online, our local radio station, Bella Magazine and even ITV show Daybreak wanted to share the story of a little girl with Down's Syndrome taking the modelling world by storm...well, turning it on its head anyway. With each published and broadcast story, Natty clearly shouted from the rooftops that Down's Syndrome is to be embraced, loved and accepted.

Natty's agent Alison Smith-Squire
writes about how the
Downs Side Up word is spreading

Of course, all parents of children like Natty know why they are so beautiful. It isn't simply the packaging on the outside that makes them so, although their delicate features apparently echo those of the perfect dainty doll. No, it is something that radiates from within their souls, their innocent hearts, that 'live for the moment' Joie de Vivre, that being utterly absorbed by every activity they take part in, giving everyone they choose to interact with their undivided attention and that born desire to be the centre of attention. Or is that just Natty...?

Daddy G Steps up to the Mic

2012-04-10T21:37:00.002+01:00

A usually intensely private man who holds his cards close to his chest, Natty's Daddy speaks of her arrival into this world.

Bob has always been protective and fiercely proud of his girls

A blog about Natty, by her daddy.

As our second pregnancy progressed we were told there was a one in 300 ‘risk’ that the baby had Down's Syndrome. (I now note with sadness the negative language used. We think of it now as a 1 in 300 ‘chance’.) H and I both felt the odds were acceptable and did not bother with more invasive tests. We have since thought about what we would have done if we had known our baby girl had Down’s before she was born, and we came to the conclusion that we would have gone ahead with the pregnancy. Looking at Natty now, it is totally impossible to imagine life without her and all that she brings to our world.

The day Hayley went into labour, we were very excited to be having a home birth. Mia was staying with her Godmother so H and I could concentrate on the birth. I say H and I, but of course I really mean H. So, as Hayley always wanted a home birth, we turned the bathroom into a delivery room. The practical side of me had fears in case something went wrong. But what could go wrong…?

The birth was quick as births go. It seemed like no time at all and Natty was there. But she was not crying, not breathing and blue. I remember looking at the midwife's face. Her expression was one of fear, even terror. The senior midwife was late because Natty arrived so fast. So when she arrived around 2 minutes later, the bathroom was a very tense place.

I was told to call 999 and get an ambulance fast. To say I was scared is an understatement. My usual calm self was frightened. Frightened for H and Natty as I did not know what was going to happen next. I remember Natty’s face being rubbed hard to make her breathe. But I could see she was not. The midwife said that because her blood was rich in oxygen she was ok for a short time but we must get her breathing. I think I saw her do ‘mouth to mouth’ and she started very shallow breathing.

I made the call. I gave address details and waited outside in the winter air wearing nothing but a Tshirt and shorts…my birthing partner attire. I stayed outside the gates to the house so the driver could see me standing waiting. The ambulance arrived in 7 mins. I know because I counted every second, all 420 of them. During that time I prayed for her survival, making a pact with God by offering myself instead of her, while of course hoping he did not need either of us. I went into the house with the paramedics and in that time I had decided her living or not was God's plan. I was terrified to go inside to find out if she had made it. It was the biggest relief of my life that she had! The paramedics quickly got Natty on oxygen and her colour improved.

Having an independent doula present at the birth was also a great support for me. Being present during the labour of your child can be hard for a man, almost feeling like a bystander to someone you love in so much pain. Thank you for your support Katinka. You made sure I was included, heard and comforted as much as Hayley was.

Soon, we were in the ambulance on our way to hospital. H was incredible. Having just given birth she walked to the ambulance. She was incredibly strong and determined. We arrived and were admitted. I carried Natty proudly into the hospital and up to the second floor in the lift. She was then taken from me.

She was hooked up to lots of machines while lots of masked experts stared at screens. I could hear the bleeps of the monitors checking her heartbeat, pulse and other vital signs like oxygen levels in her blood. I could see the SATs were low, very low so I knew we were not in a good place. The doctor in charge said very little. I guess he wanted to be sure of his facts before he came to any conclusions. Lots of scanning later, we were eventually told she has Downs Syndrome, high blood pressure and other scary facts. 2 days later, a long distance scan later by Bristol Children’s Hospital revealed 2 holes in her heart.

I guessed she had Down’s but now it was confirmed. H cried out “I cannot do this!”, only to say moments later that our baby needed us and we were her best hope in life. For my part, I think my Italian heritage came to the fore at this point as I did not think anything other than she is our baby and we will love her and watch her grow. “She’ll be fine”, I said. Was I in denial? Not at all! I was just being strong because that was the only thing I knew how to do, for everyone’s morale.

The medical team involved who took care of Natty and watched over her progress for the next 12 or so months were incredible. They knew most of the answers on the day and even though they did not share everything with us straight away, they saved her life.

When Natty came home for the first time it was Christmas Eve. It seemed as if she had lots of tubes and wires protruding from her for feeding and monitoring (H tells me there was only one for each purpose!). And I recall lying on the sofa with her face close to mine. I was listening to her breathing and I remember thinking I wish I knew how to make her better, make her strong… only right now! We took her back to the hospital as planned that evening. The team checked her over, could clearly see that love what she needed most now, and said we could bring her home for good!

Needless to say, the extended family was wonderful and very supportive during those dark and frightening days, but to be honest, I really do not remember much. I was just too shocked and I cope with difficult situations by immersing myself in work. After Christmas most of the difficult medical appointments were dealt with by H, as I was still travelling at lot. So I am in awe of Hayley for learning to pull out the tubes, and reinsert them and expressing all the milk she needed. I know I could not have done those things, especially the expressing! (H said I was allowed one joke.)

And so to today…since those first scary days, where Natty was a precious bundle of new life ready to take on the world...(we had to be positive)...she has grown into a beautiful, funny, smart, and determined little girl. She is a handful like Mia. Sisters together! All sisters will know what I mean by this. And thanks to mummy and Mia and, me, she continues to grow and learn.

H and I know we can, and will, do whatever is needed to make life for Natty and Mia, a life filled with fun and happiness, challenges and adventures, educating and nurturing them both so they can be valuable members of our community. We treat them both in the same way. We make no allowances for Natty because we want her to be...’normal’, whatever that means.

In the future, I hope to walk both of them down the aisle on their wedding days.

Daddy G

Big Brother Talks of his Love for his Little Sis with Down's Syndrome

2012-04-09T22:19:00.000+01:00

Natty says she thinks everyone should have
a really big brother to pick them up
when they fall in the mud.

Natty – ‘just’ one of my 4 wonderful sisters.

In some ways it is hard to put into words how I feel about Natty as I don’t think of her any differently to how I think of Mia or my other sisters – they are all ‘just’ my sisters, each one an individual. I don’t mean ‘just’ like I’m taking them for granted, but rightly or wrongly I don’t think of, or indeed treat Natty any differently because she has Down’s Syndrome.

My wife, Leah and I had visited Dad, Hayley and Mia only a few days before Natty was due and all appeared as expected. We had a lovely day out, visiting Father Christmas and had left Cornwall for home, unsuspecting about what was about to happen. Dad and I talk frequently but not every day, so when we had not heard from them for a few days we were not too concerned, but as it dragged on a little we made more calls and eventually got hold of Dad to be told the news that Natty had been born with health complications and that she had Down’s.

It’s fair to say that I am my father’s son, and the characteristics extend beyond a fondness for red wine and chocolate éclairs, so I also have the same ‘digest and deal with it’ attitude that he possesses. As a result I don’t recall being upset for Natty, but instead tried to offer help and support, but I don’t think you can ever really say the right thing at a time when people are trying to comprehend an unexpected situation... We offered to make the journey to Cornwall to be with our family, but as we were travelling down a couple of weeks later for Christmas it was decided that there was not much we could do to help. This meant that we did not know all the things that went on in those 1^st few days of Natty’s life and Leah and I are reading these blogs with as much interest as you, so we can try to understand all that happened. Reading Hayley’s blog has made us understand why we felt a little in the dark about some of the events that took place around the time Natty was born. We now understand the shock and worry that took over.

So when we got to meet Natty for the 1^st time, 3 weeks after she was born, I guess I had already come to terms with the news. When I saw and held her she seemed just like any other baby – albeit one that needed a little extra help feeding (which would certainly change!). This mindset has stayed and I still don’t think of Natty any differently to Mia. Leah and I do all the things that Big Bro & Sis should do, like chase her and Mia round the park (and get them muddy!), introduce her to good rock and roll music along with a nifty few dance moves, sneak her a few extra crisps as a snack before teatime and give a leg-and-a-wing until we can lift no more.

Natty has highlighted my awareness of disability and changed my perspective on some things – I find myself getting angry at even the thought of someone making fun of her, and many times I have played over in my head what I would say if I were to hear anyone with a derogatory comment. But I think it takes the situation to happen to you before you know how you will react, and I would like to think I would try to gently re-educated people with prejudices in a way they understand. But I guess it comes back to where I started with the opinion that Down’s does not make Natty different to you or I. Yes she needs to learn in a different way and yes it may take her a little longer than others to pick up some skills, but she can, does and will continue to do nearly all of the things that you and I do – often without the fear which holds us back - and I’m truely grateful that she has people around her who work very hard to enable her to be ‘just another’ sister.

If you find Down's Side Up interesting or inspirational, please vote for us at the BritMums Brilliance in Blogging Awards here.

Poem of Hope at a Christening

2012-04-07T15:44:00.001+01:00

This heartfelt, simple, yet powerfully optimistic poem was written and read to Natalia on the occasion of her Christening party by a dear friend of mine. It still makes the hairs rise on my arms when I read it now.

The party was held in our garden and attended by friends, family and key medical staff many weeks after she was Christened in her hospital incubator.

Natalia,
You are the new bud on an ancient tree.
You are the beauty beheld by your father's eye.
You are the voice of your Mother's laughter.
You are here and
You are now and you will be.
And look at you!
You look pretty wonderful to me.
You are you, Natalia.
You are our friend.
We will walk with you
And we will love you.

Documentary Research

2012-04-04T12:00:00.000+01:00

Dear Downs Side Up followers

I've been talking to a documentary TV producer about making a positive and inspiring film that might follow someone expecting a baby with Down's syndrome through their pregnancy and beyond birth.

Hopefully they would meet Natty and our family to give them a sense of life with a child with Down's Syndrome in the family. The film might explore issues of support and information and possibly issues surrounding support during breastfeeding. The DSA are behind the venture as well.

If your baby or child has had a recent diagnosis of Down's syndrome, perhaps you have found strength through websites like Downs Side Up and are interested please get in touch with me. Please be reassured that all initial contact is completely confidential and for research purposes only to see what the project might involve...

Message me on my Downs Side Up Facebook page if you would like to find out more.

Happiness is...

2012-03-25T21:27:00.002+01:00

...a decision to appreciate the simple things in life.

This little anecdote popped into my incoming email box this week.
It's the kind of Round Robin I usually delete at source without opening,
but something about it caught my eye.
It did indeed turn out to be a worthwhile read and something I wanted to share...

A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight o'clock, with his hair fashionably combed and shaved perfectly, even though he is legally blind, moved to a nursing home today.

His wife of 70 years recently passed away, making the move necessary.

After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready.

As he manoeuvred his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.

'I love it,' he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

'Mr. Jones, you haven't seen the room; just wait.'

'That doesn't have anything to do with it,' he replied.

Happiness is something you decide on ahead of time.

Whether I like my room or not doesn't depend on how the furniture is arranged ... it's how I arrange my mind.

I already decided to love it.

'It's a decision I make every morning when I wake up. I have a choice;

I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do.

Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away... Just for this time in my life.

Old age is like a bank account. You withdraw from what you've put in.

So, my advice to you would be to deposit a lot of happiness in the bank account of memories!

There are five simple rules to being happy:

1. Free your heart from hatred.

2. Free your mind from worries.

3. Live simply.

4. Give more.

5. Expect less.

You see, it turns out that happiness is not something that is the preserve of those with 'perfect' lives, those without obstacles, challenges or hurdles to face. And yes, there are days where we'd all rather hide away from humanity. But perhaps 'deciding' to be happy, to adopt a positive mental attitude is part of the answer to appreciating the simpler, yet more important, things in life.

Our children certainly seem to have got the knack of this without any effort haven't they...

Love From Uncle Carl x

2012-03-09T20:46:00.001Z

Well where do I start with this blog post that my sister asked me to write?

It seems hardly possible that the next few paragraphs will summarise 5 years. The time has passed so quickly but I can still recall some of the early events as if they were yesterday….

The lead up to Natalia’s birth was, I imagine, as typical as any family. We were all super excited with the prospect of another member joining us and I was excited about becomingan uncle again. Many trips were made to my sister's house to help out looking after Mia, and we enjoyed planning for the future over many meal times.

I will start my story from when I first heard the news...

Bob phoned me on my mobile and I was sitting at my desk at work. It was around 3pm and I remember him saying that Hayley had had the baby, she was a girl. And in his very typical softly spoken voice, which I can still hear to this day, he said she had Down's Syndrome. My first reaction was disbelief and I questioned his comment, almost thinking he was joking. When I look back, I realise how silly this was, but now feel that my reaction was because this sort of thing happens to other people…. (4 years previously a work colleague had a son with Downs and I remember vividly thinking I hope that doesn’t happen to me. I moved from the company and so did not follow the progress of his son. My perception has obviously changed since then.)

After putting the phone down from Robert I remember feeling in total shock. I stayed at work for another hour at the most and drove home. On the way home one of my closest friends called me, as usual for a chat during our commute. He asked how I was and I attempted to tell him that my sister’s new daughter had been born with Down's Syndrome, but I couldn’t. I burst into tears and just couldn’t talk. The feeling was of disappointment I guess, and immense worry for what the future would bring. This child was not 'healthy', or 'normal', which is what everyone says when a baby is born. We have a disability in the family. These were the thoughts running through my mind. When I think back this was purely because I knew nothing about this condition and so I was speculating… My friend tried to chat but I ended up pulling over and putting the phone down. I sat in a layby until I could control my tears and then drove home.

The next thing was to get down to Hayley's, a 6 hour drive, as fast as possible. I booked the rest of the week off work, drove from Essex to Sussex that night to collect my mother, and then got up at 4am the following morning to allow us to arrive in Cornwall for breakfast.

Those next 24hrs I remember crying more than I had in years. Almost more than I had when a family member had died. This now seems very strange, almost as if we were grieving about the loss of a “perfect” child instead of being happy we had a new little lady in the family.

We visited Natalia that next day and she was so tiny and fragile in the incubator. Unable to hold her or have all of those enjoyable photo opportunities that usually take place when a new baby is born, I really felt like were looking in from the outside. I remember thinking and saying that we need to be positive. We need to be saying all of the right things and being positive. I hated the thought of Natalia laying there and seeing all of us unhappy. What would she be thinking? She would think was she that bad?, Whydon’t they like me? Maybe I shouldn’t be here? Maybe I am not wanted. And that would make herunhappy. The thought of thislittle baby unhappy was not on the agenda so we had towork through it. I probably told my sister all would be alright, but deep down I had no idea, none of us did, but we had to think positive.

The next day we had the Christening. My niece, Mia, was unable to come into the room as she had a cold, so I stood with her outside the glass window and held her up during the baptism. I remember she got very heavy after 10mins, but I couldn’t let go. We both touched the glassas if to get closer to Natty, but that was as close as we could get. Hayley and Robert frequently looked atus to keep us as part of the group but it was very hard. Mia was fantastic and so mature in understanding what was going on. I have never felt so close to my sister and mother until that moment.

Something special happened and I knew our family would never be the same again, we would be closer,
and this was all because of Natalia.

So day 2 and she had already changed our world for the better….. If she could do that after 2 days then imagine what she could do after 5 years.

My outlook on life changed overthe coming months. I became completely intolerant of people moaning about trivial things and started to move my goals in life from material things, to experiences to be had. I also became very sensitive to people saying anything derogative towards people with disabilities or learning difficulties. On a night out in London with work colleagues I overheard someone saying that another person was 'mental'. I instantly reacted and challenged them, which lead to a full blown argument of which I was not goingto back down. Anyone who knows mewould say that this is very much out of turn, but this was something that Ineeded to stand up to. It’samazing how narrow-minded people become when they are exposed to very fewexperiences. They skim along the bottom of life thinking its straight forward and easy and that everyone elsewith a challenge is doing something wrong...

This leads us up to the naming ceremony. As previously mentioned Natalia was Christened soon after her birth, with just immediate family present. It seemed fair that a larger party should now be held. However to keep it intimate and personal the party was held at Hayleyand Bob's home and we were invited to say our own words instead of having aservice. This turned out to be oneof the most moving experiences of my life. Family and friends saying what they felt and giving some ofthe most heart-warming words of support and comfort to us all.

Obviously as 'Uncle Carl' I also was required to say my piece. I thought long and hard about this, wanting to ensure that I said the right things. I decided that to say Natalia was fantastic and we were lucky was predictable, and on reflection of what to say I was taken straight back to that moment when Natalia was first born and I thought how sad she would feel to look up and see us all so upset and crying. She would wonder why we were so disappointed and that would make her feel bad. It was then I decided to say what I felt Natalia would say if she could have had her speech that day. She would have been pleased to have been here, happy that her parents and sister were looking after her. How she was looking forward to her life with everyone here. I can only hope this came out in the right manner...

During the next 5 years she has kept us focused on what is and isn’t important in life. When she was strong enough, there was avisit to Bristol hospital for a heart operation to take care of. Melissa (then my girlfriend and now mywife) and myself travelled to Bristol to look after Mia for the day whilst hersister was having the operation. We went to Bristol zoo and had as much fun as was possible… we saw children that day in Bristol hospital that recalibrated my view of the “perfect child” significantly. What is perfect? What is normal? Is normal boring? Challenges are what make us the peoplewe become. Just because Natalia requires more support than someone else, why does that make her disappointing?

We should be thinking that she is like the Porche of the human race. She needs extra fine-tuning but she can bring so much more fulfilment and fun to life than an equivalent Ford Focus that’s sensible, practical and reliable. (Forgive me, I am an automobile engineer and this analogy works for me!)

So on that note we are up to the present day. Amazed at the progress, pleased how so many people can be proved wrong, and excited with the possibility that life has no limits.

We can be set in our ways, but shaken out of them by remarkable people, even if they are only 5 years old……

‘Uncle Carl’

Outshining the Bigots

2012-03-02T00:13:00.002Z

Downs Side Up has reached another learning curve.

That of the Sociopathic Bigot's anonymous online comment warfare in relation to an article published by a 'parenting' website in the UK.

We knew there would be critics, but I guess I wasn't prepared for calls for my daughter to be locked away from society, labelled an immeasurable drain on resources, or referred to as someone who should have been aborted 'post-birth'.

I did not read these comments myself. I caught the first snippets, quickly got the gist and logged out, afraid of what I might read. Little bro scanned later and fed back his findings.

I blah on... the point is that it would have been easy to hit a wall today. Chuck in the towel, go back to cosy easy-dom. Not sit blogging til 1am most nights, struggling to learn the rules of Twitter, interacting with other parents on Facebook.
But what about all the other people this man has upset? What about all the incredible positive things that people have said to us, the inspirational people we have met along the way? The attitudes we have changed, the support we have given? WE can't give in to that.

The only way I can describe my thought processes now, is through the words of my dear friend and Doula at my girls' births, Katinka. She wrote to me tonight:

"You don't need to engage with anything that's not for the greater good and within the energy of love that you are walking this journey... (Ignore this plonker I think she means!)...There are 'small-minded' people everywhere, and when you shine, sometimes you attract shadow. (He was quite some shadow!)
But you have a choice as to how you let it affect you. Do you focus on the lives you are changing for the better, the eyes you are opening to the beauty of the 'beyond the immediately apparent' or are you going to give your mind/energy/focus/attention to the shadow and let it suck you in?
Will you shine even brighter, letting the shadow illuminate your own dark places stronger? The Hayley I know does the later, brave, fantastic, amazing, vulnerable woman... (her words, not mine ;) )

So do not allow yourself the luxury of dwelling in self doubt, we must all be strong in the belief of our radiance once we start shining...there is no way back...and you are shining! Brightness attracts more light and focusses the shadow into expression...that's just science. (Brighter we will become then!)

Keep doing what you are doing darling, it is making waves, which is always a good thing."

Another dear friend Rachel pointed out this morning that "attitudes of bigots may never be changed. What you can change is all the underlying and hidden negativity that many people have. I am certain that many people have seen Natty's picture and read your story and realised that they had preconceived ideas of what children with Down's Syndrome were like, and now start to see that all children are children, and that children with Down's Syndrome are as varied and talented as children without.

Changing those small misconceptions is massively important. You are changing attitudes. You are making a difference."

We will march on with our mission to change attitudes towards Down's Syndrome, we will smile and feel the love from all those we join arms with along the way.

And this is the last thought we give to the bigots..... We are duty bound to carry on with the mission that has chosen us.

I've already told you, it's called Triceratops!

2012-02-27T22:16:00.000Z

A precious little clip of our clever youngest girl, not only delicately and proudly painting independently, but saying Triceratops pretty clearly too!

The Importance of Respite and True Friends

2012-02-24T11:32:00.000Z

It's very easy to say...

respite, a bit of time off, a break, a change, a rest

We all have very different lives.

Some of us work, some seek elusive work, others choose to stay at home, a few can afford extra help, others have family nearby to lend a hand, some are lone parents, some are lonely within relationships, others are fortunate to find themselves within supportive partnerships, part of a team.

But what we all have in common, as parents of children with a disability and special educational needs, is that we need time out in order to recoup our energy levels and enthusiasm . And time for yourself is really difficult to actually factor in to your life for many reasons, often not least because you don't think you deserve it.

Here's my experience...

In the early years one stumbles in a state of worried exhaustion much of the time, from one illness, hospital appointment or surgical procedure to the next. In between you are happily bonding with you baby, constantly amazed by what they are achieving. Breastfeeding meant that both of my babies and I could not be far from each other for long, so in those days, time off meant hitting the sack to grab a couple of hours' sleep or doing a mercy dash around Morrison's, delighting in looking at fresh vegetables alone, while a family member or close friend played with the girls.

My family live many hours away, so there was never anyone on hand to step in on the worst of days, particularly hard if hubby was working away. That was always a cue for a medical crisis.

Trust has also always been a big issue for me. Who could we leave the girls safely with? Who could deal with Natty's dietary needs or cope with her propensity to choke? There were always so many issues to explain. No-one can do it as well as the parents after all, can they. And part of living through any kind of shock is that it leaves you wanting to be completely in charge, to over-organise every element of your life, so that you don't get any surprises again!

Eventually though the cracks begin to show in any super hero's foundations. For me it was my back that began to bemoan the lifting of a little lady who was growing stronger and heavier. That in between stage of needing lifting into cars and carried the last part of every walk, but being a big enough to make a chiropractor's hands rub with glee.

For other friends it has been migraines or depression.

This is when we need to listen to our bodies, and those around us telling us to look after ourselves.

This is when we need to force ourselves to eat a little better, to walk round the block for 10 minutes each day while a trusted friend or partner listens out for sleeping children, to ring an old friend and chat about anything but the daily worries, have a giggle about the old times, rent a funny DVD, buy a new sassy lipstick. Remember that you need to look after yourself as well as the rest of the family, because if you don't those cracks will widen.

At this stage of our journey, we decided to move into a temporary dwelling and do some fairly heavy duty, messy, disruptive work to our house (primarily to accommodate Natty living with us as an adult if necessary). This also combined with The Statement of Special Educational Need process for Natty, which required many meetings, research and hours of writing reports in readiness for her starting school. So, although her heart surgery was behind us and she was stronger and healthier with mainstream school ahead of her, we had taken on other external stresses and worries.

We did take a wonderful family holiday, which undoubtedly kept us all afloat and we borrowed a friend's 'supernanny' for a night so we could go away. But somehow I always felt on red alert, adrenaline high, ready for the next challenge.

Finally my body shouted STOP!

Facial palsy, right side weakness.

MRI scans, blood tests.

A brain tumour? MS?

Well, happily, it all turned out to be (nothing but) stress and exhaustion.

So we all sat up and listened. A plan was hatched. A whole weekend away was arranged with my dearest oldest friend who has also been rather poorly herself. Natty was old enough and well enough to be left, along with her sister, with my husband at the helm.

It turns out that this is really the best kind of medicine. A quiet weekend with someone who delights in nurturing you (and vice versa), someone who knows your pre-mother identity. Who has seen all your hideous old outfits, laughed at all your dodgy hairdos, rolled her eyes over your inappropriate choice of boyfriends. Someone you can reminisce, laugh, cry, share and hug with. Someone you can eat, drink, walk and shop a little with.

Someone who dressed as Adam Ant with you, remembers your terrible denim dungarees, stuffed chocolate sponge pudding in at the rate you did,
and helped you pin that Bros poster on the living room door of your shared student house!

The key for me was that this was the first time in 7 years that I had had a weekend of purely adult time. I couldn't believe how it felt not to be on red alert.

Oh, and did I mention the sleep. I clocked up 33 hours in 3 nights!

So back I came, refreshed and human. Ready for the upper respiratory nonsense and the lack of sleep that accompanies it. Ready for games and art and devising learning activities. Ready for doing a TV appearance. Ready for anything.

I'll try not to leave it 7 years until the next pitstop. Neither should you. Think of it as an insurance policy. Don't be afraid to accept help, it is not a sign of weakness.

There have been some fabulous responses from friends regarding this subject upon reading the blog...
The first comment below says it all;

"If Momma ain't happy... ain't nobody happy!"

Another friend reminded me that all Mums "need to put on their own air masks first before attending to others."

And a third likened the 'red alertness' we parents of special needs kids feel pretty much constantly, as "penguin ears", after the way penguin parents can always pick the sound of their baby out in a crowd. We have to close the penguin ears sometimes.

Downs Side Up is honoured to have been shortlisted in the Britmums Brilliance in Bloggers awards, in the INSPIRE category.

Vote here!

Photo Exhibition, Bella and Sarah Gordy!

2012-02-23T13:33:00.000Z

An exciting week for us here at Downs Side Up HQ...

A beautiful new Photographic Exhibition by Simon Burt Photography in collaboration with the Cornwall Downs Syndrome Support Group, featuring many of our beautiful local youngsters with Down's Syndrome will open on 3rd March at the Eden Project. After that we hope it will be housed at The Knowledge Spa, Treliske Hospital and then maybe guest galleries. I can't wait to see the photos of all these amazing characters, including our little Natty. Who knows...a calendar next?

New Trisomy 21 Exhibition opens at Eden

Our second positive article in a national publication is on the shelves this week, until Tuesday 28th. I have had it read to me but haven't actually read it in print myself... enough emotional outpouring already :)
Another rung on our ladder of seeing positive images of our children in the media has been climbed. A few more preconceptions about Down's Syndrome have been changed. A handful of new/prospective parents have hopefully been encouraged and inspired.

Our article in Bella Magazine this week...

I had my first negative comment (1 in 114 aint bad!) (actually 1 in 10627) hits sounds even better!) on my blog this week. A friend helped me see that this is actually a positive in itself. We are so popular that we have now spread beyond the readership of merely friends and family. And if someone can actually be bothered to write about her negative feelings, then perhaps we have helped her work through some issues she has. So we published it and left it at that. Dealing with it has been another learning curve, another lesson in life. (We soar above of course :) )

However, the true highlight of my week was being Tweeted by the amazing actress Sarah Gordy, who features in the current series of Upstairs Downstairs. Sarah happens to have Down's Syndrome too by the way. Do take the time to watch on Sunday evenings.

Sarah Gordy in Ouch! Magazine

Mia's Mini Blog About her Sister Natty

2012-02-13T20:09:00.001Z

Mia (7 years) decided that she wanted to write a mini blog post about her experiences of having a sister with Down's Syndrome. She sat quietly and wrote over the last couple of days. This is what she produced. These are her own words, spelling and grammar, even line spacing....

"When my sister Natalia was in hospital

I was very, very woried about her .

Every day I went to see her. i was angry and dissappointed that I could not go in.

When I was aloud to see her was the ONLY

time she looked round when she hird my voice.

During her operation I was not aloud to see her

which made me very woried because I thought she might have died and if she had died I would have no one to play with.

When she came home I was relived to find the fact

that she was alive and that made me very, very happy.

A few weeks later she was as pretty as a picture and up and runing.

One week after that I remember when I put her diurretix down

the tube.

I thought she was beautiful and she was in my arms

and when ever I talked she would look round at me in a loving way.

A cuple of weeks later she had no tube in her nose and she had a bit of golden hair.

When 3 she was siting up right. [ I use to help her with her exersises]

When 4 she was as strong as me.

Now 5 she is a little pain but she is just as beautiful.

THINGS I FIND HARD ABOUT NATALIA…

She calls my name, but doesn’t asking me anything.

On the stewls in the kitchin she asks to get down then asks to get back up again.

Sometimes when i’m asleep she comes in and wakes me up by sitting on my head!

THINGS I LOVE ABOUT NATALIA

She is beter than any other sister in the hole world.

She is funy and sily and makes me laugh.

When we go riding I think she is the best rider.

I am proud of her."

Something for Special Siblings

2012-02-12T23:41:00.001Z

Mia welcomes Natty home.

Mia was two years old when her Mummy became pregnant with Natty.

There had been 3 miscarriages in between, so there was very little excitement, more apprehension and a sense of bracing for the next possible emotional upset. (Oh, the irony!)

But the morning sickness kicked in. A very good sign that things were going ahead. But boy did it kick in hard. Mia's Mummy became a useless, exhausted, humourless, mess.

She couldn't eat or drink anything except San Pelligrino water without bringing it back. She couldn't even cook nice meals any more, as the smell made her ill. She lost weight and looked really terrible! But ready meals weren't so bad, in between Daddy's great cooking.

Little Mia would sit and worriedly watch her, rubbing her back and saying "I don't like it when you're sick Mummy." Mummy wasn't much fun during these days, there were definitely fewer zoo trips and more CBeebies hours clocked up than she was used to. Mia looked forward to time with Daddy and Mummy's brother Uncle Carl, who would swoop in to do wheelbarrow races in the garden, or make helicopters out of boxes.

Already, as with any first child when the second is on the way, Mia's life had begun to change irrevocably. But she began to bond with the baby in Mummy's tummy. She saw her on the scan photos, talked to her at story time and, amazingly, the baby would talk back, telling her to eat her greens!

The night Natty was born, Mia went to stay with her Godmother, her first sleepover. So spoilt, such fun, so grownup.

On her return the next day, everyone was so sad. Mummy and Daddy were crying. Uncle Carl and Daddy were dismantling the baby's crib, putting it in the garage. Where was her sister? Grownups explained that 'Natalia' was not well.

She was taken to The Hospital, a place where they made you really scrub your hands hard with strong soap. So desperate to see and hold her little sibling, she took a 'Little Sister' babygro gift for her. Amazingly, Natalia had a matching 'Big Sister' T Shirt gift waiting in her crib just for Mia! It was hard for Mia to understand that they could not exchange these gifts personally because the cold she had could kill her sister if she gave her a hug. She watched Mummy do it for her, from behind the barrier of a glass window.

Later, Mia and Uncle Carl would watch Natalia being Christened from behind that same glass. Dressed only in a nappy and various tubes and monitors, attended only by Mummy, Daddy, Grandma and the hospital minister, but Natalia too was certainly missing the sound of that voice she heard the most while within the safety of her mother, that of her sister.

Days passed, Mummy virtually lived at the hospital, but made sure she was home to share breakfast and a meal and a game with Mia each evening. Mia spent her days with Grandma.

Emotionally exhausted Mummy and Daddy held Mia close between them in bed each night. She felt like their only precious glimmer of normality in a world that had been torn apart and turned upside down. Her health, beauty and perfection seemed too impossible to be true.

As Natalia grew stronger and Mia's cold was fought off, the two were allowed to meet. They were treated to the use of a private side room as Mummy was spending 18 hours a day at least trying to teach Natalia to breastfeed. Mia carefully sat in the middle of a large bed and was allowed to hold her sister on her lap. She was unphased by the tubes. She just looked into her sister's eyes, kissed her and chatted to her. For the first time, Natalia opened her eyes and turned her head towards the sound of that oh so familiar voice, the one that had been missing. In the days that followed, the only time Natalia would wake long enough to feed for more than a couple of minutes was if her sister was chattering away in the room.

The relationship between the two sisters was set in stone from this moment forward.

In hindsight, the look of worry, of a very deep understanding is evident in little 2 year old Mia's eyes in photos of this time. She grew up over night.

She gave her teddies diuretics. She held the syringes high and still as they fed her sister's milk into the naso-gastric tube. She gently helped to wash her in their shared baths. Despite Mummy and Daddy being terrified for the frail infant, Mia was always allowed to hold her when she wanted a cuddle, as they knew this bond was crucial. They kept the fact that their hearts were in their mouths well hidden.

Mummy has always been aware of how tough things can be for Mia. Natalia has always taken a lot of time, care and patience whilst creating a lot of worry. But her initial fears for how Natalia's existence would effect her sister have been allayed. Mia has grown into one of the most sensitive, caring, non-judgmental and responsible 7 year olds imaginable.

Mummy has always tried to factor in special time for her. When in hospital, sharing a camp bed at Natty's side, this was in the form of little treats and nice art activities. During Natty's heart surgery, Grandma took Mia to the science museum in Bristol in between visits. This way she was given special attention, but not excluded.

These days, Mia's parents acknowledge her maturity and compensate for the attention Natty demands, and so freely gets from strangers, by building in special alone time with her. Shopping trips, meals out, little beauty treats and stay up later night. Just watching X Factor without your little sister is great for any older sibling.

COMING SOON - Mia is currently writing her own mini blog post from her perspective...

Practical advice and support for siblings of disabled children and adults of any age:
SIBS - For brothers and sisters of disabled children and adults
Sib Space - Offering support and activities for siblings in Cornwall

Ode to Potty Training

2012-02-07T22:56:00.000Z

Not an ode exactly, more of a nod towards potty training/toilet training/toiletting.

One of the most stressful uphill challenges in any parent of a young child's life.

Add in the fact that your child has a learning disability (deep sigh).

Already that hill of a task has become Mount Everest, hasn't it.

Well, yes, teaching your little one to use the toilet will be tricky, but take a deep breath, accept that fact, and look around for tips that might help your journey become easier and more humorous.

First of all, accept that ALL children are different, and the timetable for wanting to use the toilet will differ for each one. Any time from 3 years to 8 years and upwards is 'normal' for a child with Down's Syndrome.

Wait for the cue to come from your child. Do they pull at their clothes or tell you when they are wet or soiled? Do they try to imitate older siblings or friends by trying to use a potty or toilet? Are nappies (diapers) dry for longer periods of time? Then they are ready for your help to move them forward in the toiletting game :)

This is just our experience, yours will be different. Let yourself be led by your child. (And burn any potty training manuals written by ladies who don't have children of their own..!)

To begin with we sat Natty on a potty just before bath time each night. It was fun, and there was no pressure, she relaxed while the bath ran, and occasionally produced a wee! We did this for about a year without moving forward.

A year and a bit before she started school, we discussed potty training with her pre-school. They were keen to help out and we made plans together so that we did the same at home and at pre-school. We spoke to a lovely Continence Nurse (I think I inadvertently pushed past several short lists, simply found her work number and rang her...) She was a wealth of knowledge! She made sure there wasn't a physical barrier to starting toilet training...could Natty go several hours with a dry nappy for example? Once we were sure this was the case, she suggested using a ladies' incontinence pad (brands other than TENA Lady are available I'm sure!) inside a pretty pairs of girls pants (I guess that is panties for our American friends, not trousers!). This way she could choose her own pretty 'big girls' ' pants, and feel grown up, with all the security of a nappy. We had tried 'real nappy trainer pants' before as they let the child feel when they are wet, but the bulkiness and similarity to a baby's nappy were now holding us back.

We started using the pads. Each day we asked her 20 times at least if she wanted a wee. We took her each time we went, and each time her sister went to the loo. After a few weeks, we began to get a few 'hits' on the potty. The progress was painstakingly slow, and I guarantee you nappies would have been the easier option. Particularly tempting as they are free from the government for children with disabilities. I focussed on the end goal and refused them.

We began to buy smaller pads in the hope that by feeling wet she would ask for the toilet. This didn't happen, but we calmly took spare clothes wherever we went and simply changed her several times a day, when damp. We focussed on the successes and praised Natty highly. We never once got cross with Natty for her failures (although I have privately screamed in a cupboard when she has wet on a freshly made bed, new carpet or sofa.)

Finally we reached a point (it happened to be summer) where we felt Natty was being a bit lazy and was capable of more (perhaps 6 more months after starting to use the incontinence pads).

We bit the bullet and stopped using any kind of protection during the day. No turning back.

Day one - 6 accidents.

Day two - 5 accidents. (that's a lot of washing...but hey, it was summer.)

We stepped up our reminders. We realised Natty preferred sitting on the toilet to the potty, so we put all the potties in the loft (1 for each room of course) and bought sturdy, large steps and comfy, padded child's toilet seats. These are even available with arms to help independence. Do not be afraid to ask your Physio or OT if you have one, for a sturdy large step that your child feels safe to climb and turn around on.

We bought 'Piddle Pads' to protect car seats and chairs. (See Useful gadgets page)

The accidents continued, but with perhaps the same number of successes each day. We questioned Natty's readiness, but I think I could be quoted as saying I knew that she was ready and that she would start school in pants if it killed me! Then after day 10 we noticed only 3 accidents. This was the point of no return.

We bought hilarious fluffy toys in the shape of a wee and a poo (pictured above). We encouraged Natty to hold whichever one she needed at the time (and if that failed, they at least made us giggle during the many hours spent in the lavatory!)

We made up ridiculous songs "If you do a weeeee weeeee on the tooooilet, you can have a chocolate drop, yum, yum, yummmm" (Did I mention the bribery? The less said about that the better ;) )

We read books and looked at flash cards while Natty sat on her throne to pass the time.

Star charts meant nothing to Natty, but give them a try. We also bought a large pink potty that sang when she produced a wee...but she got wise to how it worked and simply pushed the buttons inside to get the reward.

That was 6 months ago. Natty began school in September, aged 4 years, wearing ordinary pants, and now only has 1 accident every fortnight or so (aged just 5)... just like her 'typically developing' peers. She still rarely remembers to go to the loo when she needs to, seldom actually asks, but we now only have to remind her every couple of hours or so.

I think we can count that as a resounding success, don't you.

For more practical info and continence products, visit ERIC: Education and Resources for Childhood Continence

Rock and Pop advice for constipation

Diagnosis Down's

2012-02-01T23:34:00.000Z

Today I heard that a friend of a friend of a friend on the other side of the world is reading my blog.

She and her husband have just received the diagnosis that their beautiful unborn baby has Down's Syndrome.

I hear they are finding strength in our photos and words and are moving forward with the pregnancy.

It's hard to begin to describe how I feel about this...other than just a huge sense of responsibility, an enormous amount of love sent to this couple during this time of devastating shock and a deepened urgency to let a wider audience see the realities of Down's Syndrome today.

I think back to our pregnancy, and wonder how we would have felt and reacted had we known for sure that our second baby girl had Down's. I know many couples who say the ante-natal diagnosis gave them time to get over the shock before meeting and bonding with their baby. I hold these people in high regard, how strong and firm in the knowledge of their own strength they are.

I hate to think what might have happened had we known. I might have panicked, wanted that imperfect baby out of me as soon as possible, disgusted by her imperfections. Perhaps I would have wanted to keep the little life that was moving inside of me and my husband not...what then? Perhaps we would both have rallied and strengthened ourselves in time. Who knows...

But I am not, and would never be one to judge any decision that any mother makes. We cannot understand another's path unless we have walked in their shoes, understood their circumstances and family backgrounds. The same goes for those who feel they cannot cope with Down's Syndrome when it surprises them on birth day, and choose to offer their child up for adoption. I say with honesty that it crossed my mind back then, and had it not been for supportive family, friends and community, who knows what fallout we would be suffering now.

All I can say, with a smile of pride on my face from where I stand now, is that Down's Syndrome alone is not a reason to terminate a pregnancy or give away a much wanted child. We must not judge, but support. We must dispel fear with love and humour. We must enlighten the ignorant with beautiful examples of our fully rounded children leading happy integrated lives. We must all include and integrate everyone into our society.

Live, love, laugh, learn, eat, drink, dance, make friends, enjoy nature...what more do any of us want out of life.

I read of a young mother who suffocated herself and her little boy who has Down's Syndrome. This desperate act speaks volumes about how far we all need to go to include, accept, support and help other members within our communities.

But I refuse to provide a sugar-coated Disney version of Down's Syndrome. There will be worries. It will be hard work at times. Some of the waters you cross with be unchartered. You will wonder if you have taken the right route. Most people will be supportive but some will patronise your child. Allow yourself time to talk to them all regardless.

There will be illness, perhaps surgery, but you will find an inner strength to cope. You will meet amazing parents who have done the same along the way, and you will share a glance that instantly says "We have both broken through the glass ceiling of life, haven't we."
Others won't 'get it', but you will smile and hope they stay by your side regardless. Your child will excel at some things and really struggle to learn others. Just ask my husband what I am like if someone throws a ball at me, and he will tell you that we are not all good at everything (I cower by the way).
There will be days when the stubborn behaviour makes you want to scream. But that is just parenthood.

A (thoughtless) pregnant mature Mum once said to me, with Natty in my arms, "I'm having all the testing because I wouldn't have time for one like that." Well I guess if you haven't got 'time' for a child like Natty, then you haven't got time for any child. Full stop.

But listen - all children are different. Some are prettier and cleverer, some are whirlwinds and others are shy, some are loners others thrive on attention. At the end of the day, each one reflects it's family, looks like it's parents and gives back to life what has been put into its upbringing. A child with Down's Syndrome is more like it's family than other children with Down's Syndrome, although there will be similarities.

I wish I had known all this when Natty was born. And this is my simple message to those just starting on this journey.