Showing posts with label charity. Show all posts
Showing posts with label charity. Show all posts

World Down Syndrome Day 2018: What I bring to My Community, Because Inclusion Matters

I couldn't be more excited about this year's themes for World Down Syndrome Day. It's always celebrated on 21st March, which, as you all know, represents the 3 copies of chromosome 21 that are present in those with the condition.



The organisers are asking you to join in and share #WhatIBringToMyCommunity stories, the Down's Syndrome Association are reiterating that #InclusionMatters, whilst Mencap are campaigning for equal quality healthcare for all with their #TreatMeWell campaign. 

These are all topics that we can get involved in and shout about on our social media timelines, these are important issues that are relevant to us all, and here at Downs Side Up we're helping you reach a wider audience by linking your #WDSD2018 blog posts up as well. 

There are educational and powerful videos galore, like the 50 Mums, 50 Kids, 1 Extra Chromosome shown below, that's guaranteed to put a lump in your throat. 

There are also so many new books launching this week that you might need the rest of the year to plough through them. Try A Major Adjustment by Andrew Merriman, the sequel to A Minor Adjustment for starters. 




There's a whole host of fun events to dip in and out of as you wish: You can don your funkiest socks - "for we are all colourful and unique", you can offer random acts of kindness to strangers, you can fundraise by running a marathon or take part in a dance-a-thon to show your joy through the movement of your body.

Or, like me, you can sit at home and write or share as many educational articles and stories in celebration of all that is wonderful about that extra chromosome. Watch out for our articles and infographics, featuring as many of you as I could, in Mummy and Me which will feature Ayyub Kasia and his friends, Huffington Post, Firefly and Special Needs Jungle this week. 

Ayyub Kasia with his friends at their mosque
Ayyub Kasia is a valued part of his community

You can also write for your local newspaper or magazine, or do an interview on your local radio station. And you can signpost support to new families, show them the way as others did for us, and make new friends around the world.

Surely that is what World Down Syndrome Day should be all about, bringing our community closer than ever, strengthening links and reaching out to one another. 

And so my dear Down's syndrome family, one that I am ever so grateful to be a part of, please do add your stories, your videos and your enthusiasm to the linky below. 



Let's Celebrate World Down Syndrome Day 2017

Let's Celebrate World Down Syndrome Day 2017!




The 21st day of the 3rd month sees World Down Syndrome Day - the date 21/3 representing 3 copies of chromosome 21 which leads to the common condition.

Through Our Eyes: A Tribute to Daisy Rose Nimmo

Dedicated to Daisy Rose Nimmo.


Daisy Rose Nimmo 2004 - 2017 @Steph Nimmo
Was This in The Plan???


The SEN world were shocked and saddened to hear of the passing of Daisy last week. This beautiful and vibrant young daughter of Stephanie Nimmo has changed many lives more than she could ever know. 

Steph has been a constant and vital campaigner for change within the learning disability world and healthcare over the years. We all felt we knew Daisy and her family through Steph's powerful blog Was This in the Plan?


Steph wrote "Today our beautiful, feisty, determined girl, Daisy Rose, took her last breath and is out of pain and dancing in the stars with her beloved daddy."

Fate: Reunited with the Nurse Who Changed Everything

Just over ten years and a few weeks ago, our youngest daughter Natalia quietly and swiftly made her entrance into our world. A gentle birth, a soft soul and a rare delicate beauty came together that day. 


Yet all around us, and her, raged a kind of storm. Turbulent emotions, the whispering winds of ignorance and a heavy weight of worry filled our hearts. 

Reunited with the nurses who changed our lives


The identification of Down's syndrome and a heart condition was a shock to us, something we weren't expecting, or at least had shut from the consciousness of possibility. 

Explaining the Radio Silence: What Have We Been Up To?

Sometimes life rattles by at such a pace doesn't it. I mean really, where does the time go?
There are so very many things in the air at the moment but I just don't seem to be able to find the time to sit here and share them with you over a cup of tea. 
My friend Emma says that she enjoys a little catch up newslettery kind of a post once in a while, so here goes... 




Something for the Weekend 


Read all about it              
We've been busy on the media front. A couple of months ago we were interviewed by The Guardian Weekend Magazine for a big spread about Down's syndrome. The piece has been on hold for a while and I had to promise not to talk to any other publications, (it's hard for me to keep quiet but I did!) but the time has finally come and it should be in this Saturday 17th supplement. 

I'm nervous, I always feel very vulnerable when we go public as a family, but I trust the journalist implicitly. And to be in a paper I often actually buy is quite a novelty. I still won't be reading the comments though.



Changing Perceptions in Sequins and Glitter 


Natty being preened for a glossy photoshoot
Then back in August Natty and I went up to London for a photo shoot for the UK's largest selling glossy magazine. It's for the Christmas edition which comes out next month, so more about that nearer the time...but needless to say I am bursting with pride that they wanted a little model with Down's syndrome within their posh pages.  Natty certainly is changing the face of beauty one smile at a time.

Did I tell you she called a fellow passenger a 'big fat pig' on the train on the way there though? She did. She actually did. She wasn't, she was lovely and brushed it off with a laugh. Lucky.  *Sigh*




Charity Christmas Catalogue 



Mencap have taken two large boxes of our little book for children I Love You Natty to sell in their Christmas Catalogue this year. We are so very excited to be able to reach more young families, support groups and school this way. 

*shameless plug* 
And with profits going to the learning disability charity, what better reason that to buy a copy for someone's stocking this season. 



Training Professionals 


Remember we popped up to Edinburgh in August to make a podcast film with Hazel Powell and the NHS Education for Scotland (NES), and meet nurse and midwife trainers and well as the lead nurse for Scotland? Well, the film is finished and nearly ready to share with the world. We've watched it and hope that it will provide a springboard for discussion in medical professionals' training, particularly in the arena of delivering a diagnoses and supporting new parents. I am quite certain that it's a powerful watch.


Paul and Emma give an inspiring speech

Last week, I headed over to Northampton (which turns out to be incredibly tricky to reach from Cornwall!) for the National Portage Service Annual Conference. I was lucky enough to be able to share our journey and experiences of Portage with other families and professionals, as well as learning so much from the other speakers, including Paul and Emma who share a house together and live independently with support. 


Writing for Change


I've had a couple of very exciting writing projects to get my teeth into as well of late. I was asked to produce a chapter for a book on improving the healthcare of people with a learning disability which is just about finished. Well, it's been submitted but I keep tweaking it and writing to the author with an updated file. 
Must. Leave. Alone. 
Sorry Steve.

The British Medical Journal also asked for an article for doctors working with adults with Down's syndrome. With a massive amount of input from actress Sarah Gordy from Wood for the Trees, and speaker James Hamilton, who both have Down's syndrome, as well as the General Medical Council, the piece is nearly finished. I've really enjoyed working on it and have learnt a great deal in the process.

Oh, and The Department of Health published a little piece about Natty starting primary school as part of their #BestStart0to19 campaign last week. You can read Transition into School: Small Steps for Little Ones with SEN on Viv Bennet's site at here.



Awards 


MAD Blog Awards
I was an emotional wreck after being announced the winner of the MADs Blog Award for Outstanding Contribution. To say I felt over-whelmed was an understatement. My face mostly looked like this all evening: 


Proud, humbled and emotional at the MAD Blog Awards @TomArber

I bumbled through an ad hoc acceptance speech. And cried. A lot. Thank you to everyone who put my name forward. It really means such a lot.

Mumsnet Blogging Awards
Then more excitement. Mumsnet is also a large network of very serious writers and I could never have imagined that Downs Side Up would be chosen from hundreds of entrants as a finalist in the Campaigner category of their blog awards, alongside the simply incredible bloggers Comeback Mum and Complicated Gorgeousness, all winners. 

I actually had a bit of a funny turn when I saw this news but am now looking forward to a group hug with the others at Blogfest, coming up in November. 

Learning Disability Champions
I also found my name listed as a Learning Disability Today Champions finalist. I find this very embarrassing. I have sat on this news for weeks because I can't bear to keep bleating on about awards... new parents landing there don't want to read that. But by the same token I am hugely proud to have been considered by medical professionals and the editors of Magazine Learning Disability Today as a leading parent advocate in the world of LD.

So many of my inspirations and gurus are also listed, from teaching staff, to nurses and self-advocates, as well as fellow bloggers. We are all working together for better understanding and equality for those with a learning disability. So pop over and have your say here


********

I think that's it for now. We are off for a family break together shortly and that is the best news of all. Uninterrupted time with our girls. Because at the end of the day, we are just an ordinary family, doing what ordinary families do.


On Meeting the Driving Force Behind Down's Syndrome Charity



Damon Hill at Sandy Park

Excited at having a rare evening out together, and at the prospect of meeting a man we had been inspired by for many years, Bob and I preened and scrubbed up on Friday evening before kissing the girls goodnight as they settled down for an evening of jolly japes and a few too many sweets with one of my oldest friends.



Scrubbed up and ready for a Down's syndrome charity evening

We were heading to Exeter's Sandy Park for a glittering charity auction evening organised by the Down's Syndrome Association and Down Syndrome International whose work supporting families in this country and across the globe is legendary. 

The host for the evening was the internationally renowned F1 racer and Sports Personality of the Year Damon Hill OBE and our dining partners were the generous Porsche Exeter and Michael Spiers Jewellers who had both donated fabulous prizes for the occasion.


Process not Product: Learning to Learn

Yesterday saw the school Harvest Festival Service at the local church. Natty created her box of groceries to donate and we chatted about the older residents of the village who would receive them. 


I think it's so important for all children to learn about helping and giving to others and I'm particularly keen for Natty to understand this message. We do a lot of fundraising for local and national Down's Syndrome charities, mainly for speech therapy provision and to support other parents, but I don't want Natty to think that she is exempt from helping others.

One of the greatest mantras that stays with me from my teaching days is that THE PROCESS, NOT THE PRODUCT is the most important part of any activity. Learning to learn, create, be independent takes precedent over the end product itself.



So, Natty covered the box in tin foil herself after I had cut strips, then carefully arranged things inside which we had chosen from the cupboards together, including her home-grown onions. 

I resisted the temptation to 'help' make it all look 'artistic', according to me. I crossed my fingers that the teachers and recipients would understand what we had done and not think I'd  lazily chucked a handful of things in a box as I ran through the door on Monday morning.

Thankfully they did, and I was so pleased we'd done it this way.

The chore was carried out independently and Natty was left feeling proud of her achievement. This is the approach we are using with homework too now that Natty is getting some each week. If you take a few minutes to think about and set up the activity, then your child can do the rest by themselves.


We have to know when it's best not to interfere as parents, don't we?

Interview with Actor Sarah Gordy



Snooty Fox Images: Sarah Gordy

I haven't actually had the pleasure of meeting Sarah Gordy in real life yet, but she has had a huge influence on me and is a great inspiration not only to our family, but to thousands of others.

Sarah is a beautiful, talented, humorous actor, (you may have seen her in Upstairs Downstairs or Holby City), a charity ambassador, a public speaker and a campaigner.

Sarah also has Down's Syndrome, but is is not all she is and she does not let it define her.

Sarah recently agreed to let Family Downs Side Up interview her. Mia (M), Natty(N) and I(H) wrote some questions for her:


Sarah, when did you first discover a talent for drama? (H)

At school my teachers said I made the other children feel confident on stage so I always got big parts.  Kaleidoscope Theatre were traveling around the country auditioning people, a friend was going and I went along for the ride.  I joined the Company.  Later Granada TV were searching for somebody to do three weeks filming for Peak Practice.  Carousel Theatre said they didn’t have anybody who could do it but they knew somebody who could.  That was my first professional job.


Snooty Fox Images: Sarah Gordy
Where did you do your training? (M)

My mum’s kitchen table really!  Mum, Catherine (my sister) and me. Mum would ask ‘what ifs’ and we would have to imagine. When we had a story we had to think how the people felt that sometimes made us change the story. We learned nursery stories to train the Little Grey Cells. I also did a course in drama at Sussex Downs College but I learned the most at home.


What’s it really like when you see yourself on TV? (M)

It is not really me, it is the character and it is nice to feel the character again.  If it is an interview then I am watching myself, weird but interesting.  I was so disappointed because I didn’t get copies of Live with Gabby or This Morning.  I would like to have seen them. I have seen other interviews though.





Can you tell us anything about your current project? Or is it top secret ? (H)

‘The Colour of Light' is being filmed in August.  The main role is played by Shobna Gulati (“Anita” in Dinner Ladies, Dev’s wife “Sunita” in Coronation Street) I play “Gracie” I went to Wales last week to shoot a teaser scene and some still photos.  Funding is there for the film but we need some more we want to make it brilliant.  Will tell you about crowd funding later.  “Gracie” is a beautiful role, she makes people feel good.


What is a typical day in the life of Sarah Gordy? (H)

Great question, you know what happens if you are filming or doing a play so I will tell you another day.  I will exercise to one of three tapes.  I will look at Twitter if I have time.  I am Director/Trustee of The Oyster Project which is run by disabled people for disabled people of all types. I help run Oyster Drama Group and we do films and plays. Lately we are also doing dance with James Dunbar of Chicken Shed Theatre.  This takes a lot of my time. Sometimes I help out at British Heart Foundation shop when I have time.  I have to do my share of the housework too.


I know you and your sister are very close too. How would she describe you in 3 words? (M)

Energetic  Passionate  Happy


What’s your favourite cake? (N)

A BIG one. Chocolate.  I love most cakes!


Have you got a pet? I have a Chihuahua. (N)

No.  When we were little we wanted one but mum has asthma.  Dad said we had to choose. Keep mum or get a dog.  He joked that mum could cook and a dog cant.


You are an enormous inspiration and a role model for young people with Down’s Syndrome and their families across the country. How does that make you feel? (H)

Great.  I want people to be happy and not limit themselves.  I feel wonderful if I make people feel encouraged.

I talked to a Junior school assembly on Thursday (made the kids laugh and adults cry) about how we dream about what we will do when we grow up.  I said your dreams more likely to come true if you are fit and healthy and I told them about skipping songs their great great grandparents would have had.  I had toured a play called “Walking On Water” with Theatre Centre to schools which had a lot of skipping.  I get asked to do a lot of talks but I need to earn a living.  Wish somebody would make a film it would tick so many boxes.


What issues would you like discussed/raised by families and support groups working with individuals with Down’s Syndrome? (H)

Mum and I have been talking about habits.  
People with Downs Syndrome stick to their habits. My friend is a good worker at Waitrose. He will always do things the way he was taught you can trust him. Another friend got really upset when she came with us to the cinema.  We take a yogurt or a sandwich a bottle of water or juice.  Her cinema habit is loads of chocolate & popcorn and cokecola.  She thought my mum was cruel.  I love her but she has diabetis and can hardly walk.  Habit learned is for life.


What is Your Dream Sarah? (Sarah's bonus question)

To get a role on TV as a real woman not a ‘Downs Syndrome’.  In the old days a black man was just black he could hold a tray, dance etc.  I have played complicated characters on stage and the critics liked it, but TV is conservative.


You can watch one of Sarah's inspiring talks for TedX here.

        


Thank you Sarah. I look forward to meeting you one day soon.
H x

Thank You Body for What You Have Done

As many of you know I recently took my clothes off, save for a mismatched pair of funky socks, for a photoshoot. They are at the bottom of this post, but I'd ask you to read about my reasons for doing it first.



Primarily it was Kate On Thin Ice who invited me to do it, she who writes an inspirational blog about boosting women's mojos and giving them confidence. 

Yes, I thought, I will show the world that we must celebrate our Mummy bodies, in all their stretched and squidgy glory for they have created our beautiful children.



Then I thought I might as well raise a bit of cash for my chosen Down Syndrome charities while I was at it. Nothing like getting your kit off to get people to look up and give, I figured.

£3500 WAS RAISED FOR VARIOUS DOWNS SYNDROME CHARITIES. THANK YOU X






So, at 43, I did it. My photograher friend at Photography by Maryna donated her time and expertise, along with a make-up lady Julie of Angel Face and Geoff produced a video of the preparations and my reasons. But I found the day strangely emotional, as this behind the scenes photo shows.

The tears behind the bravado

Why was that?
I thought at first it was because I was thinking of all the families just starting their journeys with their little ones with Down's Syndrome and remembering that tricky time of acceptance and adjustment for us.

But no, it was more than that.

I then thought perhaps it was because the last time I was naked in our house with a group of people around me, it was at the planned home birth of Natalia. Perhaps my body was remembering, revisiting the shock and worry.

It was only when I was chatting to a journalist one evening about the photos and why I wanted to share them with other women, that I suddenly realised why that day had been so emotional....

Like all women, my body can tell a story, the story of my life.

The growing up and adjusting to my new shape, the hideous toes I hid until I was into my twenties and moved to Cornwall where flip flops are de rigeur, the growing to accept and gloss over the bits you don't care for and make the most of the bits you do. 

Then there was the stuff it has lived through the horse-riding falls, being married to husband number one Mr Aggressive, the keep fit fads and phases, the parachute jump, the minor RTA.

And then I turned my thoughts to babies
I have been pregnant a total of 7 times. It's quite a lot and it's not something I think about every day. But they are there as part of my journey.

We first became pregnant unexpectedly quickly on our honeymoon, a paradise beginning in the Maldives. 5 weeks later that ended amid blame: the sun, the diving, the rum. I was desperately upset, for life is supposed to go exactly how you plan it when you are first married isn't it? I Googled and researched and planned a detox. It would not happen again.

I became pregnant straight away after our second attempt. We were already more cautious, keeping the pregnancy quiet even from family because it didn't seem real. But it was very real and the morning sickness kicked in with a vengence. I was so desperately ill, lost weight, was listless and struggled to keep down dry crackers and San Pelligrino water. Anything else was unbearable, even the smell of food. Bob had to eat in the garden at one stage. Gradually the illness passed and out came our beautiful, strong, feisty, dark Mia, the image of her father. She was an undiagnosed breach, but luckily we managed.

Being a Mum was wonderful yet all consuming. The tiredness continued, Mia didn't sleep well and breastfeeding on demand continued for many months. The last thing on my mind was another baby at that moment. But, just around the time of Mia's first birthday I became unexpectedly pregnant again. It seemed too early, but I knew I would have coped, but by the same token I was wary of my body's ability to sustain this pregnancy. I had a 50/50 chance right? The track record showed it.

I was right. Again at around 6 weeks I miscarried.
Lying on the sofa in pain, covered in blankets. I began to wonder what was wrong. Why was my body rejecting these babies? Surely there couldn't have been something wrong with both of them. My diet was incredible, I was taking Folic acid, I was only 34. Was that too old?

My GP said there was nothing to worry about and that they would only investigate after 4 miscarriages in a row. Gosh, what if that happened. 4! I wasn't sure if I could take the emotional trauma.

We moved house and quickly pregnancy number 4 was conceived. This time when I saw the blue line, there was no excitement at all. I just thought, 'Right, let's give it our best shot. Here we go again." It became a challenge.

I rested as much as you can with a 1 year old, lifted nothing. But to no avail.
I sat at a baby sign class, looking around the room at other pregnant Mums, so happy and oblivious to my pain. Tears plopped silently onto my lap. Why was it seemingly easy for others and not for us? A selfish thought.

My head knew we were lucky to have Mia and I knew other's pain was much worse. All our losses were early but my heart was growing fearful that I would not be able to make a sibling for our firstborn.
It wouldn't have been the end of the world, we would have coped, adopted maybe. But those were my honest raw feelings of the time.

Pregnancy number 5 came fairly quickly afterwards. I getting frustrated with my body, cross and angry, impatient too. I began searching around for more help, a definitive answer.
I went to a herbalist and Foresight who tested a sample of my hair and prescribed various vitamins for the shortfalls it highlighted. If any of that works it was too late. Again the dull ache that signified the end. The lack of sickness or hideous metallic taste always a sign it would come. I was clutching at straws I guess.

Bob found it hard to comprehend my dark despair. He urged me to relax, that all would be fine, and that anyway we should be grateful for having Mia. I guess for many men, until they see a baby it is hard to feel a pregnancy in the same way as a woman does. She lives it after all.


So, now on the regime of various vitamins, Natty was conceived. I panicked, was desperate to know if all would be fine. I paid for a private ealry scan at 6 weeks. The heart was beating and we were to go home and wait. Nothing more could be done. There were no answers.



The metallic taste came and the nausea rose, I knew these were positive signs. Less nausea than with Mia but never-ending vomiting right until the day she was born. It was miserable but I clung to the notion that this was a good sign. Family tried to take over when they could, to entertain 2 year old Mia. CBeebies played on a loop in between.

When Natty arrived, and there's enough written on this blog about her entrance into our world, people said things about the state of my eggs, my age, why hadn't we had 'the tests'. All those questions making me feel that I had caused her medical problems. Again the body was at fault. I feared my marriage would be over because of an extra chromosome. My body looked fine on the outside but it must be decrepid on the inside. Did all those other miscarriages have DS too? The genetic counsillors could not tell us. Apparently there are no answers to some of life's hardest questions.

It's funny how your mind works when you are in shock because in reality Bob bonded with Natty far earlier than I was able, saying she would be just fine, his Italian belief in family outweighing anything else. And of course babies with DS are born to women of all ages and backgrounds.

But here is the thing:



Natty is not a mistake, nor an error. She is just as perfect as Mia. They are incredible and we made them. Not only that but my body produced every single drop of milk they both drank, for Natty that was expressed life-giving milk that passed down her nose tube for 3 months. When the tube was removed she breastfed successfully for 18 months. Thank you body.



After a period of readjustment, almost mourning that baby we thought we were expecting, Natty drew us in, melted our hearts, began her life long work of teaching us and the world around.
She will face obstacle in life, but we are here to try and smash them out of her way. Perhaps, deep down, this is me trying to make up for that teensy bit of guilt, that I too was initially a part of those barriers. 

Maybe that's why I throw my whole life into changing things for others, not ever wanting any other parent to feel the desperation I felt in those early days, and working to knock down and obliterate those obstacle for her and others like her. My head knows I didn't cause them but my heart is determined to smooth the way.

A couple of years ago came the very last pregnancy. A dangerously ectopic one that found its way despite a coil in place. That time I was relieved when no medical intervention was needed to save me from surgery, that my body dealt with it by itself. 

So that is why I chose to take my clothes off. To thank my body for the babies, those with us and those lost. To thank it for feeding our girls for 3 1/2 years between them.

To shout out to bigots like Frankie Boyle that parents of children with disabilities are like any other, not the fuddy duddies they like to portray us as. 

And, guess what, we are wives and partners and we are still desireable. So there.

LOVE


PRIDE

MUSIC OF LIFE


CHROMOSOMES

ENLIGHTENMENT