As I looked through the events of the past 12 months I stumbled on a set of photos that made me giggle. I decided to forget all the standard measures of the year: how have we developed as a family? Have we achieved the goals we set ourselves last New Year, personally emotionally, career wise? Has our blog/charity work/campaigning taken the direction we wanted?
Instead I looked through the eyes of our youngest daughter, Natty. She's taken enough photos of and by herself to show us what this year has really been about from her perspective, and that is after all, what this blog is all about; listening to the voice of those with Trisomy 21.
I hope you enjoy our alternative look at 2013... a year in selfies, taken by a young 6/7 year old photographer with Down syndrome.
Our house was filled with excited women and one token man, all preening and beautifying each other.
We don't get out of our jeans and wellies nearly often enough, obviously!
Natty and Mia beamed from ear to ear as we washed and straightened hair, painted nails, including a layer of glitter, and gathered dresses, tights, new patent shoes and hair bows together. Their babysitter is a hairdresser and she came in to help and Natty sat stock still while she wielded the scary looking straightening irons through her fine hair. She wanted a touch of lip gloss and a wave of mascara to be like Mummy and Mia too.
We even pinned Daddy Downs Side Up down and plucked his eyebrowns and buffed his nails, and shaved his head. (You all do that to your menfolk before a big night out, right?)
Handbags were found and laid out ready...
Ready for the biggest family night of our lives! For we had all been invited to the Pirate FM Local Heroes Award Ceremony, a glitzy black tie affair, taking place against the beautiful backdrop of the Eden Project. Little Natty had been awarded the Child of Courage or Achievement Award for her modelling, opening of doors for children with disabilities everywhere and gently changing perceptions as she melts hearts wherever she goes.
And yes, there was to be a disco. "With actual DJs who actually work on Pirate FM playing the music we listen to on the radio". (Mia G, 9)
And yes, there was to be "staying up late". (Natty, 6)
And yes, the girls were "coming too". (Natty 6)
...And yes, there "was going to be champagne". (Mummy, 43).
We were dressed and ready to leave in plenty of time. The girls were a cloud of pink and yellow chiffon in the back of the car. As they sat poker still, I joked to Bob that my only stress was keeping them clean until the point that the awards were given out. My biggest nightmare would be a dinner swimming in gravy and a pudding floating in chocolate sauce. I believe pale chiffon is the biggest magnet for dark brown liquid foodstuffs.
"I'm sure they won't serve that..." (Daddy)
Mia and Natty all set to party
On arrival there was a red carpet to float along while photographers took shots from every angle. I bristled with pride as Natty and Mia confidently strode into the room filled with smartly dressed adults, with not another child in sight, apart from the wonderful young woman Megan Rumsey who had won Young Person of the Year for being an incredible sister and voice for those with disabilities.
Mia marvelled at the beautiful gowns, Natty asked everyone "What's your name?"
We sat at the beautifully decorated table, complete with gold bows on the back of the chairs and gold star-shapped ballons, "Just like my shoes!" exclaimed Natty.
Of course, just for you inspirational girl.
We chatted to our category sponsors, the truly lovely people from Kidzworld who helped set up the event, and began eating. A simple Caprese salad to begin, followed by roast beef and... A SEA OF GRAVY!
I panicked (thinking of possible big brown stain right down the front of that yellow chiffon) and the lovely waitress brought Natty a dry dinner without the sauce poor mite. Both girls had to be pursuaded by everyone at the table to wear their napkins, so we all ended up doing it to set an example.
Napkin fun
Help, my mother is embarrassing me
Oh and yes, there was chocolate sauce with the brownie for desert!
After dinner the the award ceremony opened with former X Factor star Amelia Lily singing a beautiful trio of songs, the last of which had the most beautiful lyrics that seemed so fitting for Natty. 'You Bring Joy, You Bring Pain'. My facade cracked and I began to cry. Natty took to the stage to meet Amelia and was presented with a signed photo of the singer.
There was some dancing and quite a bit of showing off and bottom wiggling.
That's Natty not Amelia you understand!
We were all emotional before we had even begun.
The awards began and we were all treat to an amazing array of stories that affirmed our belief in community and the human spirit.
An elderly neighbour who collects prescriptions for those who can't get out. A young woman driven to raise money for eye charities following an eye problem of her own.
A chef who happens to be a supportive and thoughtful boss as well as a culinary genius.
Parent of the Year, who is a positive force for her children, one of whom has Autism, despite being a single Mum and having her own health issues.
An amazingly brave Emergency service worker, a coastal rescuer, an environmental guardian angel, an encouraging teacher and great paralympic sportswoman and a lady with healing hands.
Natty's award was called. She and Mia took to the stage with neither parent to help them. I wanted both girls to feel an equal part of the celebrations, for Natty is only Natty because her big sister is such an incredible influence on her.
A video clip was played, showing an interview with Natty and I. I don't mind admitting I sobbed like a baby, taking handfuls of the tissues thoughtfully provided on each table.
The clip was funny as well as heartwarming, featuring raspberries, funny faces, more bottom wiggling and a few "You are joking!'s". You can watch it here.
The audience laughed with Natty and she and Mia took the applause well, beaming even wider from ear to ear.
They were presented with a selection of toys from World's Apart (who Natty has modelled for ) and a family pass to Kidzworld. Natty couldn't have been happier as she stood and posed for the journalists centre stage.
We had just enough time to meet a couple of the Heroes before some had to leave.
2 people really stood out for me, Matt Vernon who tried desperately to save the woman whose car slipped off the King Harry Ferry slipway last month. An unassuming man who embodies all that society should be, and Shane Edwards who offers oncology massage and has worked her calming and relaxing magic on over 1000 cancer sufferers many of them terminally ill. A woman who simply radiates love and care.
We were just throwing some shapes on the dancefloor when we realised we were in danger of turning into pumpkins. Natty was flagging and finding the music a little loud, so Mia had to cut her wild routine to Guns and Roses short. It was half past midnight!
Thank you, thank you, thank you to all the sponsors and Pirate FM and the judges and nominators and fellow heroes and all those who made Friday night possible.
I know 2 little ladies who had, quite simple, the night of their lives.
I leave you with a quote from Natty this weekend:
"I want party again. I want gold shoes and present for me and surprise for me and music and dance, waggy bottom." And that sums it up in a nutshell.
Learning to read and write through cooking. What better way to a little girl's head, than through her tummy. Here's what Natty and I got up to on our latest home school day.
1) We looked at pictures I had downloaded of ingredients for our cookies. (Constipation busting ones of course!) We said the words aloud together, shouted and whispered them, giggling. 2) I gave Natty 2 copies of each picture and she did a little matching game all by herself, finding 'the same'. 3) Then we took the pictures to the food cupboard/fridge and using the visual prompts, Natty found each ingredient. 4) We assembled the ingredients and together weighed and mixed them. 5) After rolling out the dough, Natty created her own shapes and I cut freehand letter shapes, which we then baked. 6) Then the really fun bit. Natty made words from the cookies and drew around each letter with her finger, using the Ruth Miskin flashcards and chanting the rhyme to remember how to write each one. p - down the plait and round the pirate's head i - down the insect's body and a dot for its head n - down the net and around the net t - down the tower and across the tower s - down the snake a - round the apple and down the leaf
Natty traces round the letters with her finger.
7) We ate our words! Cookie recipe from the BBC adapted to bust constipation! I usually mix flaxseed/ crushed linseeds in with the seed/nut element of the recipe as this is a gentle but powerful laxative, and replace some of the flour with wholemeal flour. I have been known to include some prune juice too. You can add cocoa powder to make chocolate cookies if your children like that.
I was honoured and proud to be asked to present the closing keynote speech at the annual conference of The British Institute of Learning Disabilities (BILD).
This organisation has been around for 40 years, with a well-respected research base and vast experience in consultancy and an advisory capacity as well as providing evidence in legal cases. They really ought to be a household name in my opinion. And they are such lovely people too!
I knew the delegates would include care providers, social workers, parents, medical professionals and adults with learning disabilities, so writing my piece became quite a task. Fighting a cold, I sat up til 1am on many consecutive nights, weighing up what to say to make the biggest impact, cover all bases, be the voice of other parents. Off I set, swapping wellies for heels, my uniform of jeans for a more credible dress, and leaving my Mummy brain behind, hoping to learn as much from others as I hoped to impart myself. I missed my girls before I had even walked out of the front door. But deep down there was a little secret part of me that was very very excited about the prosect of 2 full nights' undisturbed sleep!
On arrival at the designated hotel after a 6 hour journey, (including a car journey with Keith from BILD, during which I felt like my brain was a sponge, soaking up his experience and immense knowledge of all matters Learning Disability) I hooked up with the fabulous BILD team for dinner. While everyone was immediately welcoming and friendly, 2 faces stood out for me....
Peter and Lloyd (pictured below) swooped forward, shook my hand and impressed me with tales of acting in Great Expectations and East Enders, Speaking for Mencap, training medical professionals and organising the Special Olympics, as well as setting up the nationwide Changing Places scheme providing disability friendly toilet facilities. These trailblaizers both insisted that I sit next to them over dinner. My nerves were gone. Peter and Lloyd had intuitively sensed my vulnerability that evening and chatted easily to make me feel at home.
Peter and Lloyd (pictured below) both happen to have learning disabilities.
Lloyd (left), Hayley from Downs Side Up and Peter (right) at the BILD conference
During the meal Lloyd made my sides ache with his witty one-liners and perfect comedy timing, oh, and his unparalleled ability to eat a goldfish tank-sized bowl of ice-cream and chocolate brownies without drawing breath! Peter made us all smile when he took a nifty detour on his way back from the gents' to join an award ceremony taking place in another room 'because it looked like fun'. Frankly, we could all do with taking a leaf out of Peter's book, and being a little more spontaneous in our lives, stopping to enjoy the nicer things that catch our eye, living in the moment.
All at once I realised that I, disability campaigner and author of Downs Side Up, did not yet lead the inclusive life I strive for. Sadly I was denied the friendship of anyone who was slightly different to me when I was growing up, by a society who prefered to ignore their existence. Unlike Natty's generation who gain as much from her being amongst them as she learns from being included by others, I had missed out on a wonderful alternative perspective on life that friendships with those who are 'differently-abled' brings. If I had been brought up in this way, I am certain that Natty's birth would not have caused the ripples it did. Instead of that extra little chomosome being weighed down by the stigma it was piggy-backing, it would have been crystal clear in its transparency, unshrouded by dark, unspoken mystique. My fear and shock would never have had a chance to take hold. I also met Jim Blair that evening, a consultant learning disability nurse at St George's Hospital. A man whose job it is to help patients with learning disabilities by explaining illnesses, procedures and medication by using pictures, easy to understand vocabulary, patient passports and other means. Jim is, quite simply, one of those professionals that needs cloning and putting into every hospital in the world. I immediately wanted to rewrite my entire presentation that I had planned for the next afternoon. But it was late, and my head had yet to formulate exactly what it was that I was feeling, exactly how I would change it anyway...
The day of the conference dawned
I didn't feel like much breakfast.
In knew the topic of the first sessions of the morning were going to be difficult to listen to as a parent. They were centred around a review of the Winterbourne View case (Winterbourne was a 'hospital' in which staff were secretly filmed abusing patients by Panorama). I am not naiive, we all know that abuse has and does happen and that is our job to whistleblow, and that organisations such as BILD pick up the pieces, but I was not prepared for how these sessions would make me feel.
As I sat in the front row and listened to the overwhelmingly positive review of investigations, steps and measures to close care facilities that are not up to scratch, standards set for care workers to adhere to my eyes began to prick. I wiped away a couple of tears. But the more I listened, the deeper the shameful travesty of the abuse and neglect became.
I thought of the times that people have said how lucky Natty is to have a family like us.
No.
We are just an ordinary family with all our failings. Natty is more lucky to have been born into the 21st century within a reasonably enlightened society. Elsewhere in the world or at another point in history and her fate would have been very different. The tears then couldn't be stemmed. I let them wash down my face and fall into my lap, thinking of all the other children like Natty, the forgotten adults denied education or healthcare, shunned, ignored, feared, not allowed the social stimulation they thrive on.
The speakers voice again cut through my thoughts and I realised in a heartbeat how grateful I was for the professional angels who swoop in at the darkest of moments in all our lives. The doctors and learning disability nurses, the surgeons, the support groups and charities like BILD, the researchers and Quality Care Controllers. These are the people who make it their life's work to do their best to stop things going bady wrong, and none of us knows when we will need them. Then the tears became those of relief and thanks.
Break time! Coffee and biscuits. (Aaaand breathe...)
Suitably refreshed I sat down again to support Peter, Lloyd, Jim Blair and a precious Mum called Pauline talk about how simple 'reasonable adjustments' in hospital settings can not only make a patient's stay more pleasant, but are actually a requirement in order to save lives, as the Death by Indifference campaign by Mencap set out. I described Pauline later as 'the most amazing' woman, a term I use reservedly as anyone who knows me will attest. She is the most gentle, proud, positive and encouraging person and she has come so very far since the day 31 years ago, as a newly married young woman in her early twenties, she thought the term for her baby was a 'mongrel' as the phrase widely used then was, indeed 'mongol'. This year she watched her son David proudly carry the Paralympic Flame, having been chosen for his many life achievements.
Then Jim Blair put on a short film about Peter. Again an amazing tale of the power of the invisible safety net around us all. But what I didn't know was that Peter had been badly injured in an unprovoked attack last year. I wasn't prepared for that. Please watch Peter's 2 minute film here When the presentation was finished I flew to his side and hugged him. 'That shouldn't have happened to you. I'm so sorry.' I shook with anger.
Peter had been glassed in the face one afternoon.
The day could not get any more emotional could it? But there was yet much more to learn. I decided to pass on the amazing interactive workshops after lunch. I had heard so much about and needed to meet Kate, and the day was slipping away fast.
Kate: A BILD employee and inspiration
Kate is another incredible and inspirational woman. An attractive lady in her twenties, wearing a trouser suit and fashionable bobbed haircut, she works at BILD, lives independently with support, has a full social life, her own home and a mortgage. Kate has Down's Syndrome. If Natty can achieve what Kate has achieved I will be one very proud Mummy. Kate told me that her Mum was very nervous when she moved out of the family home, but that she was fine. I guess we Mums do fuss too much sometimes don't we!
The next hour was spent getting increasingly nervous about my presentation whilst mingling with organisers of support groups, care givers and publishers of specialist resources. Again the wealth of expertise, experience and massive support we all have for one another was vast. We are all louder if our voices are heard in unison after all.
I believe there is no place for individuals who have their own agendas in this world of support, charity and campaign for change, although I am sure they exist.
And so, with this emotional build-up as background, Downs Side Up took to the podium.
My story felt fluffy in comparison to what had gone before, like the story of a fire crew rescuing a fluffy kitten at the end of a distressing news bulletin. My unremarkable story of how we struggled to come to terms with Natty's extra chromosome in the early days, our shock and fear, in part, enhanced by the negative language used by the health professionals, their 'sorries' and their tears. Of the genesis of Downs Side Up as a blog and a wider support network. The story of Natty becoming one of the UKs first clothing models with a disability. But then I realised that by changing attitudes one by one, making small inroads, knocking down walls, opening doors we were creating implications for the wider picture. For perhaps
"gently changing perceptions of Down's Syndrome
from with hearts"
was not only going to prevent other parents from feeling the desperation I, and my husband to a lesser extent, sadly experienced in the early days, and enable them to enjoy all those precious first moments with their newborn. But just perhaps my writing was going to have wider consequences than I imagined. Perhaps it would play its part in preventing future hate crime and abuse, by shining a light brightly into those shadows of ignorance.
I cannot go back and change the start of my journey as Natty's Mum, nor can I change what has happened in our society's history, but I can join forces with the teams of incredible people who are doing something about BILDing a very different future for those with learning disabilities.
That takes Innovation, Inspiration and Imagination.
"Natalia, I saw your tooth fall out so I came anyway. T Fairy :) "
She lived a very charmed Downs Side Up kind of life with her Mummy, Daddy, wonderful big sister and their 10 happy hens. Natalia had a golden extra chromosome which made her tinier, but no less and no more sweet than her older sibling.
Now Natalia was a girl who loved to do things in her own way and at her own pace. Woe betide anyone who tried to rush her, or indeed lend her too much of a helping hand.
And this was just as true in matters of the teeth as it was in any other of her daily activities. The little pointy white gnashers sat stock still for around a year after her classmates had begun to lose theirs. And when they began to wobble, they did it style. Achingly slowly, twisting and bending, teasing for months. Natalia refused to wiggle them to help them on their way. Instead the new adult teeth pushed their way out behind them, crocodile style. And still little pegs refused to budge.
One day, Princess Natalia had a tumble whilst chasing her friends. She banged her pretty little chin on a bench and those stubborn baby teeth received a knock. A drop of blood could be seen on her lip. But she continued to cling on to them.
Only now they had been shaken beyond the point of no return, whether Princess Natalia liked it or not.
The first one fell out that very evening over dinner. But Princess Natalia didn't make a fuss. She simply popped the tooth at the side of her plate and carried on eating. Her priorities were clear.
After dinner Mummy and Daddy found the tooth and everyone was very excited. They celebrated the occasion by dancing around the kitchen, clapping and hugging each other just as they did when Princess Mia's teeth fell out. Everyone was proud and perhaps just a little sad, because Princess Natalia was now growing into a beautiful bigger girl, and leaving her babydom behind.
That night, she popped her tooth into the special fairy cushion that has been used for every lost tooth for years. She was tucked into her bed and read a story about the tooth fairy, with pictures of her in it. And as if by magic, in the morning she found a golden coin, the same shiny golden colour as her magic chromosome, and a brand new toothbrush with a handle like a crocodile. The tooth fairy was having a little joke about her double row of teeth perhaps...
The second tooth that had been given a knock was ready to fall out too. Mummy took Princess Natalia to the dentist to check that everything was fine and that profilactic antibiotics weren't needed. The dentist smiled and said all was well. Mummy and Daddy talked a lot about the next tooth coming out, and the cushion hung up to see in her bedroom where she could see it.
However, later that week, as Mummy was helping her to brush her teeth before bed, she noticed that the second tooth was missing! Where, oh where had it fallen out? The family searched around but to no avail. Natalia didn't seem worried and everyone decided that it must have fallen out in the park that afternoon. They tried not to worry about whether it had been swallowed.
Mummy wiped a little tear from her eye. Mia was scared in case the tooth fairy wouldn't come. Daddy was very quiet. Together they hatched a plan, with a little help from their online Downs Side Up friends, who told them that many of them had had mysterious disappearing teeth too...
They left the special pillow out on Natalia's bed, with a tiny note, explaining that the tooth was lost. They hoped that that would be enough for a repeat visit from their flying friend. Princess Natalia cried a little that bedtime and said she was sad, perhaps because she didn't want her tooth to fall out at all, perhaps because it was lost.
But lo and behold, in the morning the tooth fairy had been! She had left another golden coin and a teeny tiny note on which was written in teeny tiny writing
"Natalia, I saw your tooth fall out, so I came anyway. T Fairy x"
We decided that that meant her name began with T, possibly Tabitha. Everyone squealed with relief.
And so you see, the moral of the story is that having an extra golden chromosome doesn't really change your rights of passage of growing up, like losing teeth and waiting for tooth fairies. They might flutter in through your window a little later in life than they did for your brothers and sisters. You might need what is happening to you explaining a little more clearly, with pictures, but in the end it's the same experience. And some experiences are really worth waiting for.
