Make Life more Accessible with Fenetic Wellbeing Mobility Products #AD

When researching mobility products online as part of my research for updating an accessible travel piece, I came across Fenetic Wellbeing.  

Mobility products themselves aren't that exciting, let's be honest. I can't make you giggle with an anecdote about a reclining chair. (but please do send yours in if you have one!) 

Super Gifts for the Senses

You'd be surprised how often people ask for my advice about what kind of present they should buy for a child with special needs. 

Birthdays and Christmas only come around but once a year and other milestone events happen once in a lifetime, so it's important to make your gift one that will light up a child with additional needs' eyes and be used frequently, whilst aiding their development in a fun and gentle way. 

Find a present that will delight, educate and develop the senses

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."

Disability Digest: 5 Fave Books I'm Reading

One of the advantages of being a blogger is that I get to find out about lots of wonderful books. Some are sent my way to read, review and share with the world, others catch my eye and I buy them to support our close-knit SEN writing community.

This month I have fiction, a personal journey, incredible illustrations, an inclusive calendar, and a jolly useful handbook to tell you about... so here's what's on my desk at the moment.

Disability Digest: 5 fave books I'm reading

BBC1 Documentary with Sally Phillips Examines Down's Syndrome Screening

We are proud to have played a small part in this forthcoming important programme.

BBC One announce documentary examining Down’s Syndrome screening

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8TH MARCH 2016 BY Lisa McGarry

Flashmob celebrations in London with Sally Phillips

Dragonfly has been commissioned by BBC One to produce a one-hour documentary that explores the impact of a new screening test that is said to detect Down’s Syndrome in 99% of pregnancies.

Skiing with Kids with Down's Syndrome

Please welcome good friend and Dad Mark MacLeod as he shares a guest post with us about teaching his daughter Erin to ski. Erin has Down's syndrome and it hasn't stopped her joining her family on snowy downhill adventures yet! So if you're looking for information on adaptive ski programmes, look no further.

Skiing with kids with Down's syndrome?

Can kids with Down's Syndrome ski with the rest of the family? 

Absolutely!

Let's see Adults with Disabilities in Advertising?

The tide is shifting. More and more companies are following the lead of household names such as Marks and Spencer and Sainsbury's and including young models with disabilities in their marketing campaigns. Hoorah!

Seb fronts Marks and Spencer campaign

Natty joins Sainsbury's Back to School Campaign

This week our little Natty's face once more peeked from the pages of Frugi's catalogue, as she advertised a glorious yellow cotton cardigan. 

Sally Whittle on Respect, Compassion and Disability

When I asked (possibly wine-fuelled) at the recent MAD Blog Awards if Sally Whittle (the founder) could find time to write a little guest post for Downs Side Up, I was flattered and surprised when she said yes. Because this woman really is one very busy person!

Sally Whittle happens to be one of the women I respect the most in this world of blog. She's a brilliant single Mum to an incredible girl called Flea, she writes with integrity at Who's the Mummy and heads Tots100, Trips100, HIBS100 and the Foodies100. 

The plates she spins are full to the brim, yet she is fun, down to earth and full of integrity. I doubt whether she would stand for much nonsense.

Thank you Sally for finding the time to write this important post on your views of respect, compassion and difference:

Sally Whittle's lesson on respect and compassion

"I can’t remember a time when we didn’t spend time with people who had disabilities, whether learning disabilities or physical disabilities." 

Are Women Given Enough Support at Antenatal Screening Tests

Do women really have a choice whether to abort or not following an antenatal diagnosis of a disability?

Are we walking blindfold into a society where eugenics is gently-presented, sugar-coated and unthinkingly accepted? 

Are we fooling ourselves that we are exercising choice in our pregnancies, where actually choice, the choice to continue with certain pregnancies is being removed?

This week a new 'safer, earlier and 99% accurate' blood test was unveiled by Great Ormond Street Hospital. I can detect Down's syndrome along with other chromosomal conditions. I've been asked countless times by the media to quote my thoughts about the test. What concerns me most is how the test is implemented.

Are women given unbiased support to make informed choices at point of diagnosis?

It’s easy to assume that the moral dilemma of whether to abort your unborn baby that you’ve learned has a disability, is confined to a shouty debate between pro-choicers on the right to end a pregnancy at any stage, for any reason, and equally vociferous pro-lifers camped outside abortion clinics with their gory billboard campaigns, designed to shock and scare.

Erma Bombeck: The Special Mother

Erma Bombeck's piece 'The Special Mother'

Many people say that 'special children are only born to special parents', or those that are strong enough to cope. 

Others assert that 'special babies choose their parents carefully'. 

Maybe this is said to boost us, or make us feel we can deal with what life throws at us, but sadly I've heard enough stories about children with disabilities in my time who are unloved, unwanted or maltreated to be rather suspicious of either of these statements.

20 Disability Quotes That Will Change Your Thinking

So very often we think we understand what a particular disability means, or how it feels to walk in another's shoes. We make judgements on what constitutes a good quality of life and apportion pity where we deem it to be required, all too readily.

The following quotes, compiled by Firefly, might just challenge the way you perceive disability and those who live with it.

"Disability is not a brave struggle or 'courage in the face of adversity.' Disability is an art. It's an ingenious way to live."

Neil Marcus

Chatty Natty on ITV Lorraine Show: The Face of Representation

Did you ever have a moment in your life that was so exciting, so surreal that you weren't sure if you dreamt it up? 

The kind of moment where you are plucked from your ordinary life and sucked into a parallel universe for the briefest of whiles, before being plopped back safe and sound, albeit exhausted and clutching a few souvenirs?

Well, if it weren't for two pink Lorraine clocks in the girls' bedrooms, I would indeed be wondering if I had dreamt up our trip to London to feature live on the ITV Lorraine Show.

8 Things my Blog has Taught Me over 2 Years

It is 2 years since I nervously sent my first unhoned musings out into the ether via the World Wide Web. Read Blank Blog Blindness here, where I talk about,  

"a feeling of wanting to get something much more important, 
very right from the onset.  

Of wanting to create something that will lift spirits, give support, bring people together, raise a smile and encourage. Yet all the while providing practical tips and real solutions for the everyday lives of parents and educators who have a child with Down's Syndrome in their lives." 

Motivation

Convinced no-one would read, I nicknamed it 'my little blogette', the sharing of our family life with 2 gorgeous daughters, one with Down's syndrome. My motivation was, and always has been, to buy precious early time for parents following a diagnosis. To show them that this path less travelled is never dull, that their lives will go on pretty much as before, and that with the right support their children will achieve great things. To dissolve and shine light on the kind of fear that consumed me in the early months after Natty's birth. An all-round Down syndrome support blog was my aim.

But what has my blog taught me? What have the unexpected lessons been? How has it changed my family? Where has it taken me, my values and thinking? And what has it achieved for others?

1 Blogging is time consuming

As the photos show, 'blogging' doesn't really describe what has become a full time unpaid job for me now. Speaking, writing, training, learning, meeting, talking. If you're thinking of starting a blog you might want to set strict limits for it from the outset. I probably spend 7 hours a day Mon-Fri on associated work, and I'm late for everything because I'm always trying to squeeze in one last call or email or Tweet.

Why do I do it? Why don't I say no when I'm asked to write an article for nothing that takes a week of my spare time? Why do I do an unplanned radio interview at 10 minutes notice which leaves me shaking with adrenaline all day?

Because when I discovered that people enjoy reading and listening, it made it all worthwhile. When one acquaintance said that before reading Downs Side Up she had felt sorry for our family and now she doesn't, I suddenly knew I was changing the perceptions of the wider public towards not just Down's syndrome but disability in general. When a new Mum wrote to me from her maternity ward bed having discovered us via Google, saying that the blog was the only thing giving her hope for her new baby with Trisomy 21, I knew I couldn't stop writing.

I'm still never prepared for the honest, open and heartfelt emails and comments that come my way, often anonymously: 

"Your blog has keep me going the last 3 months," 

"thank you for showing us that there is light at the end of the tunnel", 

"I hope I will one day be as positive as you are", 

"I keep your newspaper articles in my kitchen drawer to boost me on the bad days",

"My friend had a termination but having read your blog she is going to try again and will not have testing this time."

A Typical Day

Wake up and drag self out of bed after 3 alarm bells

Shout 'shoes' and shovel breakfast in the girls while they create dinosaurs or similar

Do school run

Home and prepare dinner (usually chucking a stew in the slow cooker)

Check and replay to emails

Check and post on all social media sites: Twitter, Pinterest, Facebook, LinkdIn, Tumblr, Google+

Write an article for a magazine or journal

Turn down about 5 emails to do reviews

Pick the odd 1 relevant review

Plan my Special Needs Jungle and Britmums columns plus any guest editing I'm doing

Join in any live Twitter chats 

Interview any guest bloggers

Chat to the latest documentary maker or journalist needing advice or a quote

Think about writing a blog post of my own.... time usually short for that.

Run out the door 5 mins late for school grabbing 'lunch' on the way

Do errands, docs appts etc

Homework, precious time with the girls, bed time and stories

Tidy up and the finish off the things that got started during the day (if I don't fall asleep before).

* I never let blogging encroach on family time, so after school and weekends are off limits.*

2 It's an emotional journey

I never for one minute expected blogging to be so all-consumingly emotional when I started. There are days where it gets too much and I have to step back, days of grief where a family I've got to know online have lost a baby, or of fear when I have had to go to the Police about a particularly nasty troll and the bigots voices surround us. A couple of days off usually brings the strength to continue shining a light into dark corners.

Then there are the times when I have been more nervous than I knew possible, frozen with fear over a live Skype BBC TV interview on a tricky subject or speaking to a room of MPs, adrenaline sending me to the smallest room in the house over and over. Then the moments of pride, reduced to tears because Natty has another modelling job or someone has noticed the reason for the long hours and nominated DSU for an award: Outstanding Contribution, Inspire, Woman of the year, Local Hero. And then the invite to Number 10.

None of it seems deserved and I am left humbled. And often crying but more determined than ever.

Yet, dear blog, I have grown a thicker skin, become wiser in so many ways.

3 Blogs have a life of their own

The work surrounding the blog has been organic. There is never a plan in mind, I just follow it's lead. Sometimes Natty's modelling or an award leads to a lot of media work. Likewise if something happens that demands attention I will write for change, e.g. getting a bigot removed from office for example, campaigning for a law change or calling for justice for someone wronged. Then I will be invited to do various events, such as speaking at conferences or Parliament. For this I research the subject matter in depth, such as the facts surrounding disability abortion law, sometimes there are facts I wish I hadn't read. 

Other than that I watch my family and listen to my heart and thoughts in the quietest of moments and write about them.

Just as the direction a blog takes can change unexpectedly, the posts which are read the most is often surprising. It's never the posts that you favour as a writer, never the ones which are the most well-wrtten, but often the most controversial. I am however happy to say that my all time most popular post is the most useful. It's the one that I read at Britmums last year and made you all cry. What to Say When a Baby is Born with Down's syndrome.

4 Writing is unexpectedly cathartic, healing and educational

Writing and speaking about the complicated emotions that come with an unexpected diagnosis for our baby was intended to help other parents, to let them know that everyone adjusts in their own time and way and that a full range of feelings is entirely typical. What I didn't realise was that through that writing, you organise those jumbled thoughts until you reach a point where they all make sense even to yourself, but you will bring them to the fore again. I have spent many evenings crying over the pc, pouring my heart into a post. It's a hugely cathartic and healing process, like free therapy I suppose! 

And by blogging those thoughts you enable friends and family to read them in privacy and at a time that suits them as well. You are able to explain in a way that you would never be able to face to face, and that helps them understand.

Alongside that, blogging is a learning curve. How do write this and pin that and post the other. And the research involved is like doing a degree!

5 There is so much online support

Above all of this I am thankful for the internet enabling the words of bloggers and charities  and support groups and writers and forums and professionals and other parents to help others, but also to bring the support I need in to me at a moment's notice. I am grateful to be part of such a supportive online family, working together to change the world one attitude, one law, one person at a time. Thank you all. If you are reading this, it's you too.

I am eternally thankful for the friends I have made along the way be they parents of other children with Down's syndrome, wise parents of adults, professionals with Down's syndrome or bloggers who make me giggle when I need a change or give me technical advice when I am stumped. Online friends who lift me when I'm tired, authors and artists and playwrites and actors, even some lovely media folk who have remained constant advisors and friends (in between those who would sell their granny for a story). I always said Natty was a great ice-breaker, but our family has met so many wonderful others whose paths would never have crossed otherwise.

6 Not everyone will understand

I can think of one or two, no more fortunately, people in our local community who have barely spoken to me since the media coverage of Downs Side Up began. I wondered at first if they misunderstood my motives, thinking I was trying to be like Jordan and revel in the public eye. Then I wondered if jealousy was playing a part, but finally someone pointed out that blogs like mine hold up a mirror for others to see their own reflection in. And as we are bringing about a subtle change, they see this is a criticism of the way they were doing things before...

7 Blogging can be costly

Paid for every click you say? Ha! Is that one of those urban myths!?

I do get a lot of requests to write reviews, usually in exchange for a cheap plastic toy. 

I say no of course. 

Other writers ask if they can put a post about insurance on my blog. 

I say no again. 

I took adverts off the blog after a few weeks because it was distracting. 

Now there is nothing wrong with blogging for payment, I just choose not to do it because I don't have time and I want the message of Downs Side Up to be clear. So yes, it costs me more than I earn. Software, domain name fees, hosting fees, train fares, blogging event tickets, accommodation, even postage. 

Worth every penny though. 

8 You have to do it naked

Not strictly true of course, but, spurred on by Kate on Thin Ice, getting naked to bring awareness of miscarriage, to encourage mums to celebrate their post-birth bodies and to forgive them for the losses while raising money for Down Syndrome Awareness Day was just one of the more curiously unexpected events of the year. Read Downs Side Up Uncovered here to find out more.

I wonder what the next year will bring?

I hope you'll pour balm on more hearts dear blog, open more eyes, make some real change, get our collective voices heard. I know you'll bring new friends, new inspiring plays or films or dance or books to watch and review. I will meet more adults with learning disabilities who will lead the way. We'll learn more tips and tricks to make life easier, often from medical or teaching professionals and we'll share them in the melting pot. Blog, you are now a hub, drawing inspiration to you like a powerful magnet. Thank you.

Oh, and who knows, maybe I'll find a sponsor!

You might like to read our most popular post 

What to Say When a Baby is Born with Down's Syndrome here.

Dancers with Down Syndrome Realising their Dreams with Stopgap Dance Company

Nicky Norton 

is the Community Dance Development Officer for Stopgap Dance Company who

"seemlessly integrate dancers 

with and without disabilities

She approached Downs Side Up but sadly I couldn't make it to a performance as I had other commitments (actually watching Up Down Boy), so I suggested an interview with her and 2 dancers Hannah and Chris, to showcase the incredible work of the company. Hannah and Chris both have Down's Syndrome.
Nicky said,

"Hannah Sampson has been involved with Stopgap for a number of years, firstly as a member of the original Stopgap Youth Dance Group and from 2010 as a Trainee Dancer.

Hannah completed a BTEC in Performing Arts at Kingston College in 2010. She has taken part in workshops with chorographers including Charlotte Vincent, Anthony Missen (Company Chameleon), Charlie Morrissey and Thomas Noone.

She has toured as a Trainee dancer for Stopgap both nationally and internationally in European Street Arts Festivals Tour Tracking 2012 and UK Cultural Olympiad outdoor tour SPUN Productions 2012.

Hannah danced in Chris Pavia’s choreographic works Shadowed Voices (performed at schools and conferences across the UK, as well as in Albania for the Albanian President in 2010) and Captured by the Dark (Resolution! 2013 at the Place, London)."

"The company has an online schedule that we are all able to access remotely.  Hannah is given schedules and diary updates on a regular basis.  Some days after class or when she is not rehearsing, she will be given administrative tasks or planning for workshops that she will be delivering and part of.  This gives a complete and thorough insight into the life of a Stopgap Dancer."

Chris Parkes Photography

Interview with Hannah

Have you always wanted to be a dancer and when did you start dancing?

I started dancing when I was three years old.  I did ballet, modern and tap.  I’ve always wanted to be a professional dancer who teaches dance, go on tour.

Who do you work for as a dancer?

I am a Trainee Dancer in Stopgap Dance Company.  I’m a member in Sg2

Tell me about a typical day in the life of Hannah at work.

I travel independently on trains in the morning. I take part in a company class or training.  Depends on the day plan.  We might be creating, rehearsing or admin and at times I perform in front of an audience.

Tell me about a typical day in the life of Hannah at home.

I’m a big fan of Supernatural films like the Vampire Diaries.  I go on Facebook non-stop.  I have a curry on Fridays and sometimes I go out socially with my friends.

What do you enjoy the most about your job?

Teaching young kids to dance.  I enjoy travelling independently.  I also enjoy performing abroad with the company.  I love creating dances.

How do you feel before you are about to perform in front of an audience and what do you do to get ready?

I don’t get nervous before performing. Before the performance I warm up with my co-workers.  My favourite warm-up is Gyro.

(Nicky explained, 'The Gyro Hannah talks about is Gyronkinesis, a yoga-based exercise for dancers created by Juliu Horvath.')

If you could be anything in the world what would you be?

Be a supernatural creature.

What three words would you use to describe yourself?

1. Shy

2. Weird

3.Family-orientated

What is your favourite thing to do when you are not dancing?

Watching The Vampire Diaries.

What to date has been the highlight of your career as a dancer?

Rehearsing Chris Pavia’s new work.

Being the Super Lady in ‘Tracking’.

First time going to Albania with the company.

You can see Hannah dancing here in this research and development clip for Chris' new work 'Awakening'.

Stopgap: 

"With our work, we seek to offer a window 

into a parallel world where human 

interdependence, strength and 

vulnerability play out with poetic realism

Nicky continued, "Chris Pavier was the first of the current dancers to join Stopgap in 1997 as a Trainee.

He became a Stopgap apprentice in 1999 and completed a Foundation GNVQ in Performing Arts at Brooklands College, Weybridge. He became a full time dancer with the company in 2000. He has worked with choreographers Adam Benjamin, Betina Strickler, Hofesh Shechter, Thomas Mettler, Nathalie Pernette, Rob Tannion and Thomas Noone.

Chris has toured both nationally and internationally with Stopgap including Sweden Tour 2004 & 2007; Japan Tour 2009; UK National Tour Triple Bill 2005; UK National Tour Portfolio Collection 2008 – 2009; British Council Mixed Ability Dance Project Albania & Romania 2009; UK National Tour Trespass 2010 & 2011, European Street Arts Festivals Tour Tracking 2008 & 2012 and UK Cultural Olympiad outdoor tour SPUN Productions 2012.

As a choreographer Chris co-choreographed Chris et Lucy with Lucy Bennett and in 2008 was the first choreographer with a learning disability to be selected for Resolution! with Statues of Darkness. In 2010 Chris choreographed Shadowed Voices, a duet for Stopgap trainees,that has been performed at schools and conferences across the UK, as well as in Albania for the Albanian President in 2010. Most recently he choreographed Captured by the Dark for Resolution! 2013.

Chris is proud to be chosen by Mencap as someone with Downs Syndrome achieving excellence in his career and is ambitious and eager to continue developing.

Chris has collaborated with Stopgap on Triple Bill, Double Booked, Portfolio Collection, Tracking, Trespass, SPUN Productions and Artificial Things."

"Stopgap Dance Company's next major outdoor production will be choreographed by our learning disabled dance artist Chris Pavia. The production will be touring in summer 2014 and 2015.

Commissioned by the Mayor of London's Liberty Festival with support from Arts Council England.
Supported by Disability Arts Online, Salisbury Arts Centre and The Point - Eastleigh through Catalyst Programme of Arts Council England."

Chris Parkes Photography

Interview with Chris

What is the best part about your job as a dancer?

I like going on tour and meeting people especially in other countries.  And I also like the choreography that I am developing at the moment.

What is the hardest part about the job you do?

Sometimes I do find it hard as a dancer because I train myself and it takes a lot of grit and strength

If you could give some advice to others who would like a career in dance, what would that be?

As a dancer it’s good to follow your dreams because its about listening and taking a lot of corrections from other people and to learn difficult feedback and take it on the chin.

If you could be anything in the world what would you be?

I’d like to be a choreographer for Union J and One Direction because I like their music.

What three words would you use to describe yourself?

Kind

Charming

Sensible

What is your favourite thing to do when you are not dancing?

Listening to Union J and One Direction.

What to date has been highlight of your career as a dancer?

Performing at the National Theatre doing ‘Spun’ to thousands.  Recently I was commissioned to make and create a new outdoor work for 2014.

Chris can be seen wearing orange in Spun, above

You can see Chris in this clip of Chris et Lucy here. Simply beautiful.

I've put my name on the list for forthcoming events and really hope to be able to watch and meet these talented dancers very soon. In the meantime, I wonder if Natty would enjoy dance lessons? Pity we live too far away for her to have Hannah as her teacher.

 To support the Stopgap charity and 

make a donation you can give here. 

Natty is a Face of Kinder '13 Finalist!

thank you!

thank you!

thank you!

to everyone who voted for our little role model to be the Face of Kinder Chocolate.

23,000 children entered the competition and Natty has been anounced as 1 of 50 finalists!

So you may see her face on your packet of chocolate yet, another step for ad inclusion, and a cry from the rooftops that Down's Syndrome is beautiful.

The winners will now be chosen based on a memorable moment question. 

I wrote that mine was the first time Natty held my face in her hands and said 

"Mummy, you happy me", her own way of saying "I love you" to begin with.