Here I Am: Off the Rails Film Premiere

Three years ago my life was derailed by divorce

Our little carriage came to a soul-shaking halt. And the shrapnel of broken hearts and bits of family life lay all around. 

And just as my girls and I were gingerly glueing the working parts back together and inching forward, a global pandemic took a sideswipe. It brought fear and isolation in its wake, and stole the hugs of friends' that had quite literally held us together.


Here I Am: Olly Bermejo at the Off The Rails premiere @Getty



Sally's Invitation

So when my dear friend and everyone's favourite actress Sally Phillips asked me to attend the red carpet film premiere of her latest film Off The Rails at the Odeon Luxe in Leicester Square, last week, nothing was holding me back. 

Sally is one of my tribe, a woman who oozes love and open-heartedness and who has scooped me up more times than I can remember. It wouldn't be exaggerating to say that my girls and I might not be where we are today if it weren't for a handful of close friends like her. Not seeing any of them for 18 months has been excruciatingly difficult. 

So, double-jabbed and full of adrenaline, I chucked a dress and heels into an overnight bag, jumped in the car and headed out of Cornwall for London and that long-awaited hug and the first dollop of excitement in as long as I can remember.

 

New friends chatting to Jenny Seagrove at the Odeon Luxe Leicester Square

Off The Rails

Off The Rails is based on a true story. Three friends in their 50s, Liz played by Sally Phillips, Kate (Jenny Seagrove) and Cassie (Kelly Preston), attempt to recreate a journey across Europe that they were unable to finish in their youth. Along the way they celebrate their late friend's life using the train tickets she left them, on the condition that they take her teenage daughter Maddie, played by Elizabeth Dormer-Phillips.

There are lost passports, train strikes and old axes to grind along the way, as well as new romantic enticements in the form of oh-so-warm Ben Miller and smouldering fox Franco Nero.

The truth in art is made even more poignant by the passing of actress Kelly who died shortly after the film was made. Off The Rails was her final, heartfelt project and is emotional because of the genuine friendships forged between the cast members, the chemistry they clearly had while filming and the raw grief they experienced after losing one of their number. I can't imagine how hard it must have been to watch her on the big screen at a premiere she left a gaping hole in.

Mirroring my life, Off the Rails didn't disappoint. It's a celebration of the bond between close friends of a certain age and, as any parent of a child with additional needs knows already, a lesson in life being more about relishing the journey we're on; however many unexpected hold-ups and diversions there are or whether you get sent on the scenic route instead of the Autobahn you were prepared for. 

The destination, how and at what time you arrive there is purely incidental.


Olly shows us the way: One big happy extended family


Our Tribe: A loving mess

Each of us watching the premiere found a little bit of ourselves on screen that day... I'm pretty sure Sally based her scorned character's angry 'ARSE!' outburst on me... but that's another story. 

And how refreshing to see a comedy about middle-aged women that tackles menopause, marriage, money worries and men. And yep, having the confidence to love yourself, your body and the pleasures we thought we'd left behind in our 30s.

The film highlights the sometimes emotional brutality of life and the lessons it forces us to learn against our will; a birth scene symbolising the pain we have to go through before we can break through to new life on the other side of trauma. And that in doing so we learn the most about ourselves and form unbreakable life bonds with a 'family' of our choosing.

As Sally put it on the Chris Evans Virgin Radio Show, "The boundaries around our families get blurred and it all becomes messy. It's one big loving mess." as we have more than enough love to share with other family units. In time of course, as the film shows, it's the grown up Godchildren that keep us adults on the right track when we falter.


Sally Phillips interviewed by Chris Evans about feel good movie Off the Rails


The Back Story

For me, Off The Rails not only portrayed but actually facilitated new friendships. The premiere drew closer a group of glorious, vibrant women. Real bonds were made that night, as we not only loved every minute of one of our gang's film, but also swapped stories, found common ground, laughed, cried and felt deep gratitude for our newfound responsible post-lockdown freedom. We talked of our children with special needs, our painful divorces, the trials our teens have faced and of rebuilding our new, wiser selves from shattered pieces. The film was our destination, but the journey into each other's lives was what made it so special.

Proudly striding from Leicester Square and through the cobbled streets in our blister-inducing but beautiful heels. Mine, a nude patent pair of stilettos, purchased as a final straw-grasp in the dying year of my marriage and mockingly branded 'a mid-life crisis purchase' by my ex, got their first ever outing. 

Tourists stopped and stared, a surreal moment out of our ordinary lives and a tiny taste of celebrity life.


Olly and actress Elizabeth Dormer-phillips head to China Town after the premiere


Lessons in Inclusion

But how are celebrities made? What renders one human more special or revered than another? For many it is hard work, genius or philanthropy that earns them this status. Some stumble upon fame, others seek it with a be-all-and-end-all passion that is doomed to feel hollow and unhappy. 

But that evening, the public, cast, critics and paparazzi alike were about to learn a valuable lesson. 

Olly, Sally's son who has Down's syndrome, accompanied his mother on the red carpet, standing by her side as she conducted interviews and posed for press photos. His genuine smile never faltered for a second. He was proud of his mother. And he was proud of himself.

Olly, much like my daughter Natty who also has Down's syndrome, is not constrained by ideas of fame. Olly and Natty treat each and every person as an equal.  No-one is better than another just because of their job title. More importantly, our youngsters have such high self-esteem and bucketloads of confidence to know themselves to be everyone else's equal. 

So when Olly looked to the paparazzi and asked them to take his photograph, he took them by surprise. They didn't know how to react. A teen with Down's syndrome wasn't on their check list. But how would it look if they said no? 


Mencap's Here I Am campaign featuring Sally Phillips, Sarah Gordy and U2's The Edge


Here I Am

Olly's huge personality, the photographers' politeness and desire to do their bit for inclusion and diversity got him his way... His smile and unfaltering knowledge that he IS as important as any star of the show won the moment. Olly proudly declares 'Here I am!' 


It felt good to be with my tribe at the Off The Rails film premiere


Reasons to Celebrate

We all need to be a bit more like the women in Off the Rails, honest, real, drawing closer and cheerleading from the wings when the years and negative experiences have driven a wedge between us. Such a delightful film created in a pandemic and premiered for the first time since our cinema seats sat empty for months on end, deserves our joy. And any film that showcases flourishing mature women deserves a whoop and a cheer.  

We all we all need to be a bit more 'Olly' too and live each day as if it's our birthday. Do things we enjoy without guilt and see everyone as equal, including ourselves. 

Most of all, treat others as you would like to be treated and surround yourself with people who keep you on track. 

Love and celebrate yourself. 

Be your own celebrity.




Off the Rails is in cinemas now. 

Grab your tribe, a face mask, some popcorn and go celebrate.



No Place for Slugs: Solidarity in Sport and Why Language Matters

 

I’ve never been an ardent sports fan. 

Well, to be fair sport has never been a huge fan of me. 

It went downhill for me shortly after the twirly fun of Music and Movement sessions to the soundtrack of Bonny M in Miss Muffet’s reception class.




Somewhere along the line, P.E. became less about dancing to Brown Girl in the Ring and more about the utter shame of being lined up in a sports hall, waiting to be picked for a team. The same two ultra-sporty kids were always chosen to be captains. And I was always, and I mean ALWAYS, the last to be chosen from my place in the firing line, usually with an eye roll or a tut. I was the bad apple catcher at the bottom of the bag.

 

This embarrassment became so ingrained that I learnt to be rubbish at team games, a kind of comedy cover-up. I was the slightly amusing mascot. And I developed a fear of balls, ducking and running for cover rather than ever knowingly catching one. And I cleverly planted myself in all the least active spots for the duration of every rounders/netball/lacrosse (yes, I am THAT old) lesson. I won't mention finding the best trees to hide behind during the dreaded cross country lessons, before popping out just as the bell rang... 



Natty practices competitive sport with joy and delight,
and cheers her opponents on just as passionately.
It's time for zero tolerance on racism and violence in sport

 


Don’t worry, I grew to love activities where I couldn’t spoil anyone else’s chances. I became a reasonable horse-rider over the years. My natural bendiness lent itself to yoga which still keeps me fit-ish and I was a bit of a lycra-clad step aerobics queen back in the day. 


But nothing competitive. Never anything team-based…


New Football Fan

So this week’s England v Italy Euro match was one of the few times I have excitedly sat down to watch football. I felt some relief that sport was once again on the agenda after such a gruelling pandemic year. It gave me pleasure to see so many families enjoying the build-up, having something positive to fill their minds after nothing but worry and isolation. Our team gave us some collective hope and a chance to clap for something more light-hearted than medical angels saving lives on the front line. It felt like a new leaf had been turned and I was trying to force past associations with hooligans to the back of my mind.



Marcus Rashford


In recent weeks, we’ve had had the opportunity to get to understand more of the players’ backgrounds than perhaps has ever happened before. Marcus Rashford and his school meals campaign had captured the heart of the nation. The bravery to stand up for what you believe in, in a calm, fair but firm way is a trait we need to foster in our youngsters. Looking out for others is what makes us human and that takes boundless strength and empathy. 

 

Raheem Sterling too, wrote openly and honestly about his personal struggles, from life after the murder of his father, being separated from his mother as she came to England to work to support her family, then joining her and having to clean toilets and grabbing breakfast from a vending machine before school. These youngsters are role models for our youth, with the strength, resilience and determination to carry on in the face of adversity. 

 

So, to see the utterly contemptable violent and racist behaviour of a significant, yet loud and unmissable minority of fans yesterday, both at the match, in the streets afterwards and online made me shudder. I’m sure the majority of you share the sickening disgust I feel and the shame that these people represent the rest of us on the world stage.


 

I’ve experienced online abuse as a blogger, ranging from vile trolling, to organised mass bulling, to just very vocal and public criticism, some of it fair, some of it not. Some of it was illegal, for which I sought police support.

It hurts. It stings. And it just slowly chips away at the sheer guts and bravery it takes to ‘put yourself out there’. 

 

But last night's racist attacks and the fickle turning on a sixpence of many supporters has pushed me to put finger to keyboard today. 


And there's a less obvious additional thorn in my side

It is the choice of language used by people, many as ashamed and disgusted as I am, some writing on the Instagram feeds of the young abused black England players to lend their support. Words to let them know that the majority of us have their backs. Phrases intended to be used for good, but with language that crushes others as it lands.



We all need to be the change we wish to see in the world

 

In latter years, I’ve silently watched online spats throughout the election of Donald Trump and the long Brexit referendum fallout, over mask wearing, covid roadmaps, vaccination programmes and every other polarising bus we’ve been thrown under. And what stuck out of my screen as sharply as the politics being argued, was the language used to voice the vitriol, regardless of which end of the spectrum it was being spat from. 


Your words count 

For so often, even experienced writers and esteemed thinkers were resorting to phrases historically used to categorise patients with a learning disability. Their word weapons of choice were ‘idiot’, ‘moron’ and ‘cretin’. Harmless words in isolation you might think, but backed up with phrases such as ‘window lickers’ and ‘knuckle draggers’ and 'The cretinous behaviour of these bone heads that don't have the intelligence they were born with...' really spells it out.

 

This is grabbing the worst insult you can think of and throwing at the heart of another. And the worst insult you can possibly think of is having a lower than average IQ. Most people I know with a learning disability are honest and truthful and kind and accepting of others in all their glorious difference and ooze with an EQ (Emotional Intelligence) that is off the scale. 

 

Words like these are used without thinking, it’s part of our culture, it’s part of the fabric of our language. ‘It’s not meant that way’, ‘it’s just a joke’, ‘stop being so sensitive’, you might say…


But maybe, along with racist slurs and the misogynistic slanders, it’s time to weed out the ableist insults and think of some more suitable for those who are heartless, selfish, hate-filled bigots.

 

Body parts have long since been my insult of choice. 

Without being too XXX-rated here, there’s something very satisfying about getting your gums around a full-bodied ‘ARSE!’ (Other ‘bits’ are of course available…)

 

Then there’s just plain ‘filth’ or ‘scum’, which calls the spade a spade.

 

But as so often in life I am learning to look more and more to my daughter to teach me the way. Her view of life is so uncomplicated and often right on the money.


 

Natty is right on target


So what is Natty’s go-to insult of the moment? ... 

‘You SLUG!’ 

So, slugs they are. 


Those sickening, booing, racist yobs who pick fights and leave towns littered and vandalised and return home to beat up their partners, urinating in the streets as they go… these slugs are the inevitable pests that feast on the freshest leaves in our lush garden. Lured out from cowering in the shadows to drown in a saucer of beer, they can only jealously dream of reaching the dizzy heights of the scented blooms at the top of the plants. 

 

And that is where those exceptional young players already are. I do hope they come back  stronger, more resilient and with a sea of new supporters surrounding and shielding them.


I’ll certainly be counting myself as one of their team players from now on ⚽



Sign the petition to ban racist England fans for life here.





Twinkl Resources Launch New Symbols App

Here at Downs Side Up we love to bring you news of innovative ways to help your child develop and communicate more easily. From Makaton signs to Singing Hands DVDs, reading schemes or specialised Apps, gadgets and gizmos. If they have worked for us, we like to spread the word.

Twinkl have launched a new Symbols App


So, when I heard that the wonderful people at Twinkl, the educational resources gurus had  launched their new Symbols App and web communication system, I was really interested to learn more. They already have a large range of free SEN resources which is being added to all the time. 

Special Dentistry: Tops tips for teeth

When you have a child with additional needs, you know how important it is to take extra special care of their teeth. But sometimes that is easier said than done. 

The following post pulls together advice and resources from dentistry experts, and will hopefully ease some of the worry and make looking after your child's oral health easier to swallow.


We ask the experts for their special dentistry tips and resources

Special Care for Teeth

Natty was as cool as a cucumber about her milk teeth falling out, mostly excited about the shiny coin that the Tooth Fairy left in the pillow. Even on the occasions when the precious tooth got lost in transit between school and home, The Toothless Fairy visited regardless. 

But somewhere along the line there was a period of time when Natty didn't want to have her teeth brushed. She didn't care too much for the dentist, began to dislike the taste of certain tooth pastes and, much to my horror, needed a small superficial filling. I had to up my game.

The importance of developing self-esteem and confidence in children with a learning disability

Self-esteem is what leaves us feeling content with ourselves, makes us like what we are and take pride in what we do everyday. It makes us feel worthwhile and know that we contribute to the community around us. It allows us to feel valued and loved by those we know, and equips us to embark on and develop new and secure relationships. Self-esteem gives us the confidence to try our hand at new activities and stick at them when we stumble. 

Here I look at tips and resources to help boost your child's self-esteem.


Ways to help your child boost their self esteem and confidence


Natty and I had just finished our bedtime story and were having a chat about our day while enjoying a hug as she relaxed in her bed, wearing her favourite spotty pyjamas. 
“I love Mummy, I love Daddy, I love Mia, I love Natty”, she declared proudly. And in that moment, I knew what self-esteem really meant, and that hers was thankfully overflowing.

Down Syndrome Diary Spreads Love Across the Globe

Seven years ago, new Detroit Mum Jamie Freeman wrote a personal message into a pristine leather-bound diary. Simply wanting to correspond with other parents with a child with Down's syndrome, she had no idea who would read her words about her beautiful son Benny, or the hands that would write within the book as it travelled through 26 families and across four countries and two continents.


She certainly didn't know that she would later publish The Down Syndrome Diary in a beautiful coffee table format for others to read, pulling its stories together closely, just as she would draw the contributors in, becoming an online family.
"Thank you, whoever you are, 
wherever you are, for your words..."


Jamie wrote her story into a beautiful book she would send out into the world. You can read her blog Ben Through it All here. 

9 Tips for Parenting a Child with a Learning Disability






Advice for parents, aimed at nurturing confident, happy children with a learning disability. 












Acceptance
Few of us would say we were prepared for our babies to be born with a Learning Disability and for many there will be a time of readjustment, even mourning for the baby you thought you were expecting. But it’s important to learn to accept your child for who they are and not try to make them someone or something they are not. That leads to frustrated parents and unhappy children. There will be challenges but you will learn and grow together in dealing with them.
I had to give myself a talking to when Natty was tiny as I felt she was turning into a ‘project’, simply the target of lots of SALT and physio activities. Of course, she is our daughter and sister first and foremost. Success at school is not the be all and end all in life and in fact having Natty in our lives has made us re-evaluate our priorities: friendship, food, music, travel, family, enjoying the moment. Time spent at home with a loving family will influence your child the most.