All posts by Vikie Shanks

‘Kingdom of Us’: What all the children take away with them….answered!

My number one son (only son actually!),  travelled to Spain and Italy for a few weeks at the end of last year and I couldn’t wait for his return both times.  His departure aways leaves a gaping hole in the house that we all feel deeply and everyone wanders around asking “When is Osborn back?”.

In the film, ‘Kingdom of Us’, I’m in Pippa’s bedroom whilst she’s away in hospital talking to Nikita about what Pippa takes with her when she’s away, she’s the ‘Spark’ in the house.  She’s the person who throws curved balls at you that create sparks, sometimes not so good but mostly in the most wondrous way.

Unfortunately, when Nikita asks me what she takes away, because she’d put me on the spot, I really couldn’t think!  Since the release of the film I’ve had more time to consider all of the children and what part they play in the family unit, so here’s a run down of each of them:-

Jamie: Jamie is where it all started 26 years ago, she was the baby I believed I could never bear, having been told I was infertile for 17 years by every doctor I’d seen.  She was a huge surprise, and not at the best time in my life, but I eventually reasoned that she was just meant to be.  Ever since, she has represented all that is great about my life and when she isn’t around we all miss her passion for everything.  Without the happy accident that was Jamie, my life would be so much the poorer.

Kacie: Kacie is the drive of the family, she forges ahead with whatever she believes in without faltering and carries everyone along with her.  She’s like the irresistible force that never gives up, no matter how hard everything gets, and she’s had her fair share of troubles recently but she’s still fighting back.

Lorie: Lorie is the determination of the family, she works so hard to accomplish the things she believes in, very often against all the odds.  She will do whatever it takes to achieve her goal, inspiring everyone else to keep going as well.

Mirie: Mirie is the heart of the family, she quietly goes about her business making sure everyone is ok and being careful she never leaves anyone on a bad note in case anything happens to them.  She cares deeply about the less fortunate, be they human or animal and is constantly looking for ways to enrich people’s lives.

Nikita: Nikita is the fun of the family, she makes us laugh so much with her incredibly sharp and very accurate wit.  Her comedic talent is astounding and an absolute joy to witness, there would be a lot less laughter in the house without her.

Osborn: Osborn is the mind of the family, he’s the one who asks the questions that no-one else would even think to ask in the first place!  He questions everything and searches constantly for the reason behind everything, keeping us all on our toes at all times.  Osborn and I can talk for hours about anything and everything!

Pippa: Pippa, as I’ve already said, is the spark of the family, you never know what’s coming next but it’s normally something very funny and unexpected.  Her wit is razor-sharp and is delivered with pinpoint accuracy, very often hitting the parts other people can’t reach!

AND ALL OF THAT MAKES FOR ONE BIG HAPPY FAMILY!

The whole team at the premiere of ‘Kingdom of Us’!

Failure isn’t falling, it’s not getting back up again….

I’m going to let you into a secret, deep down I’m one of those people who would love to live in a world of rainbows, fairies, seahorses and unicorns!   It wouldn’t be for everyone but here is my idea of a perfect world…

….and this is what I’ve got!

Now, don’t get me wrong, Lorie asleep in her Unicorn onesie that I bought her for Christmas is wonderful and very endearing, and I love Bear very much indeed and he does do a passable impression of a Unicorn, for a dog.

But you can see the difference, huh?  It’s not quite the same as my fantasy world is it?

It’s sad that we can’t all live in a happy world of unicorns, fairies etc….but this is real life and sometimes it sucks!  The last year for the Shanks family has been one of incredible highs and desperate lows, it’s all very confusing.  The film being launched, winning a major award and being nominated for a BIFA and now a BAFTA was beyond our wildest dreams at the time of filming, and the film receiving such an incredible response from the audience on Netflix is simply amazing.

On the other hand, me having a heart attack, the children’s grandmother passing away and  various other rubbish events have had us all on a rollercoaster of emotions from which we’re all still recovering!

But that’s life isn’t it?  Highs and lows…the trick is managing to ride them well enough to be able to get through to the next rainbow on the horizon.  Oh yes, and keep searching for Unicorns, they’re out there somewhere!

 

Todd: Spaghetti Agency…The best stuff happens outside your comfort zone!

Life is a funny thing, it throws crap at us all constantly but it also offers us endless opportunities if we’re only open enough to see them and accept the challenge.

A very, very dear friend of mine, Todd from Spaghetti Agency  put the following on Facebook a couple of mornings ago and it got me thinking, he often does that:-

The best stuff happens outside of your comfort zone…

Incredibly simple but so, so powerful!  We all have a comfort zone and I’m not talking about your favourite chair in front of the TV,  I’m talking about the comfort zone inside your head!

Your brain and thought patterns are where everything starts and we all spend every second of every day making decisions, whether they be big ones or tiny ones.  We’re all very conscious of the big ones, but the little ones, like whether to have coffee or hot chocolate, fly under our radar without even realising that we’re making a decision.

So, does it matter about all these tiny little things?  Well, yes!  Every little thought we have adds up to creating our character and attitude to life.  Should I have a skinny latte with no sugar or a hot chocolate laden with cream and marshmallows?  Does it matter?  Yes, it does.

I had a heart attack a few months ago and I’m having to watch everything now, my exercise levels, my diet, my sleep patterns, my stress levels etc..  Choosing the hot chocolate over the skinny latte is now, for me, a potentially life changing decision if I keep making the same (wrong!) one, even though I would much rather be in a comfort zone and have the hot chocolate!

Sometimes being outside your comfort zone is simply making the best little decision rather than the one that comforts you, being outside your comfort zone doesn’t necessarily mean jumping out of an airplane!

And although there were people disagreeing with Todd, I think they may have been missing the point.  If we never, ever venture outside of whatever feels comfortable to us then we’ll never learn what we’re really capable of.  Therefore, we may miss out on things that, actually, we really enjoy and would rather be doing instead of whatever you feel comfortable doing.  True of food, hobbies, adventures, holidays, work, and anything else you care to think of, we need to try different things!  Besides, that new thing that scared you will soon become a new comfort zone when you get used to it, time to push a little further out!

So maybe, don’t see your comfort zone as only being the big things in life, pushing yourself applies to EVERYTHING, and you never know, you might discover something that you may never have found if you didn’t make yourself a little bit uncomfortable!

 

 

 

 

Autism: Kittens in the freezer

Yes, your eyes are working just fine, the title does say ‘Kittens in the Freezer’!  I put something up on Facebook yesterday mentioning this and had a lot of raised eyebrows, should we be reported to the RSPCA?

No, it wasn’t quite like this!

Errrr…no, we might be bizarre, but we’re not cruel, so let me explain.

It came to pass some years ago that myself and all of the children were on holiday in Devon for a week and a very dear friend was very kindly house sitting for us.  He was minding the dog and all of the cats and making sure the roof didn’t blow off in a storm (it has happened!) or marauding invaders didn’t take over the property (that hasn’t happened yet but there’s plenty of time!), he was also minding our very pregnant cat who wasn’t due to have her babies for at least 2/3 more weeks.

On day two he rang me to say that she’d had 5 beautiful but very small kittens in one of the girls wardrobes, and, so far so good.  Maybe we’d got it wrong and she was a lot further gone than we thought, anyway, she’d had them and Lewis was doing a stirling job of making sure all was well.

Until the next morning when he rang to say that one had died overnight but the rest seemed fine.  I was heartbroken and knew the children would be even more so and they hadn’t even had a chance to see the one we’d lost.

Now, I guess in a normal house this wouldn’t present too much of a problem beyond the grieving process, but, as a lot of you know, most of my children are on the autistic spectrum, so normal rules just don’t apply.  I had to think quickly to try and work out an appropriate resolution where they would at least have the chance of seeing him/her before burial.

I could think of nothing other than emptying a freezer drawer, wrapping it in tissue and putting it in a freezer bag so that we could bury her in the ‘animal burial grounds’ when we returned.  I felt pretty chuffed with myself, this seemed to solve the problem pretty well I thought.

The next day there was more bad news, we’d lost another one, so, the same instructions for poor old Lewis, wrap it in tissue and put it in the freezer.  Over the next couple of day the remaining 3 sadly passed away, they had obviously been born far too early and just couldn’t survive.  The children were all devastated but actually took it better than I had hoped, and they also knew that they would be able to see them when they returned and give them the send off we give all of our departed pets and random wildlife that we’ve tried to rescue over the years ( all dearly loved and named!).

We returned from holiday a few days later and we agreed to bury the kittens the next day as it was late when we got back.  It didn’t happen, nor the next day, or the next.  Chaotic life carried on and the kittens were forgotten, which I feel terribly guilty about but with 7 children to focus on I should probably let myself off the hook!

Time went by and it was about 6 months later that someone came across some mysterious plastic freezer bags with tissue inside.  One of Osborn’s weird experiments?  Probably!  And then it dawned, the kittens!

Everyone felt terrible, how could we have forgotten them for so long?  Life I guess, just busy life.

They were duly given a fitting funeral within the next day or so and laid to rest in somewhere rather more appropriate than the spare freezer.  Putting the kittens in the freezer in the first place had just been a rather wacky solution to the challenges that autism can throw up, they need to see for themselves, they need proof most of the time otherwise it’s too abstract, it’s not real.  My intentions had always been entirely honourable.

So, there it is, the story of The Kittens in the Freezer!

COMING SOON, THE PUZZLE OF THE COTTON BUDS THAT WEREN’T!

 

 

Kingdom of Us: Searching questions on Woman’s Hour by Jane Garvey

BIFA’s!

Sunday night saw the entire Shanks family attending the BIFA’s, a glittering awards ceremony celebrating all that is best in the world of British Independent Film Making.  It was all very surreal, walking down the red carpet and having dozens of photographers taking pictures and shouting directions to us to look this way and that, and stand here and there, all very confusing!

Party time at the BIFA’s!

It was a fabulous night and we had the best time, we didn’t win Best Documentary but just being nominated and being in the top 5 was accolade enough when you consider how many documentaries were submitted.  It was an experience we will never forget and a huge ‘Thank You’ to Netflix for enabling us to be there.

Woman’s Hour

The morning after saw Lucy, Julia, James and I plus 2 babies (Lucy’s and Julia’s) at Broadcasting House for Woman’s Hour!  It was my first time on Woman’s Hour and very exciting, I’d been really looking forward to it.  It was Jane Garvey, a tough presenter and she had some pretty hard-hitting questions to ask.

‘The Gang’ at Woman’s Hour!

Having covered the back story to the film she mentioned that she had felt uncomfortable at watching parts of the film, as though she was intruding into our lives.  She’s the first person to say this, most people feel that whilst the film is very intimate and raw, the way it was filmed meant they didn’t feel as though they were intruding.  We wanted the film to be extremely honest and hard-hitting, we wanted to start conversations around the issues raised in the film, and you can’t accomplish that unless people feel strongly in some way when watching it.

She also asked Lucy whether she ever felt as though she was intruding too much.

Lucy answered by telling Jane that she knew not everything would end up in the final cut and as we had total control over the finished film she knew that some of the hardest things may never be broadcast.  She also said that she felt it was important that some of the hardest moments be caught on camera as they were important to the essence of the film.  We had total faith in Lucy and never had any reason to question her integrity.

Jane then asked me how many times I asked Lucy to put the camera down and ‘push off’?

The answer to that one is NEVER!  I knew, as Lucy did, that we had total control over the final cut and felt that everything should be filmed so that we had the choice.

The truth of it is that I never asked Lucy to stop, but there was one occasion when I told her to carry on and she decided herself to put the camera down.  That was a huge moment for us, we knew then that we could trust Lucy implicitly, she has become one of our closest friends over the years and we love her dearly.

Jane also asked whether it was right of me to put the children through making the film, and was it too much for them now that it’s out, in view of how much they’ve already been through?

I agonised over this one for the entire 4 years of making the film, but the children kept reassuring me that they wanted to do it, and they knew they would have the opportunity to cut anything out of the final edit if they didn’t feel comfortable with it.  They felt safe in Lucy’s very capable and compassionate hands and were always passionate about the whole thing being totally ‘real’.

Do they regret making it now that it’s available to the entire world?

No, if anything they are even happier about the project now that it’s out.  We’ve been swamped with messages from all over the planet thanking us for making such an honest film about the realities of the subjects it covers.  The people who’ve watched it say they feel reassured that they’re not the only ones experiencing some of the issues raised and they now understand people they are close to much better.

‘Besmirched’

Jane also made the statement that she felt ‘besmirched’ after watching the film.  This seemed to be a slightly unusual way of describing her feelings and very personal to her.  Besmirched means:-

to detract from the honour or luster of: to besmirch someone’s good name.

We all made the film in good faith, hoping that it may help some people in some ways.  Our intentions were honourable, we had no desire to make people feel ‘dirty’ in any way but we  were quite happy for people to feel uncomfortable.  We need our boundaries to be pushed sometimes in order to make us think in a bit more depth about certain things and I believe ‘Kingdom of Us’ does that.

 

 

The interview is here…

 

Numerous people have also messaged us to tell us that they were contemplating taking their own lives but have now changed their minds because they realise the terrible impact on the people they would leave behind.  That is a powerful reason for being so happy that we saw the project through to its conclusion.

And it does cover all kinds of things that we feel uncomfortable with, but knowing that people can relate to it and are potentially being helped makes that pale into insignificance.  If a little discomfort for us can change a few things then it’s all worthwhile.

Without controversy and discomfort there is no debate, and there must be conversation around subjects that make us uncomfortable.  

Episode 1: What they don’t tell you about heart attacks!

Anyone reading this who has a child will know this…..no matter how many books you read, classes you attend, Google searches you make or advice you gain from existing parents, nothing can ever prepare you for how drastically, totally and ever-eternally your life will change once you have children!  And, to be honest, how many of us wouldn’t have them if we actually knew the reality?  I wouldn’t change my children for anything on this planet but it doesn’t alter the fact that my life was never going to be the same again once my children started arriving.

I say all this because I believe the same is true of having a heart attack, no-one would ever do anything to increase their risk of having one if they actually knew the reality of what it involves and what ensues, myself included!

For most people who have a heart attack, this isn’t the first warning sign!

The stereotypical heart attack we witness mostly is of the artificial variety, TV, film, plays etc…and the actors involved in these representations are obviously portraying the event as accurately as they can.  However, having now spoken to many different people about their experience via the Cardio Rehab programme, I can tell you quite emphatically that the experience is not like this for most of us!

Firstly, the extreme pain we see portrayed is very rarely the first sign of heart problems, you’ve heard it all before but ‘indigestion’ is most people’s self diagnosis for the angina pains they start to experience, very often before the actual heart attack.  And indigestion is exactly what it felt like to me.  It’s not an agonising pain in the area where your heart is located, it’s a generalised pain that spreads across your chest, arms, back and neck and tends to feel a lot like acid reflux.  Click here to see the NHS list of symptoms and what to do if they occur.  Of course, we’re all different but this is the sensation a lot of people have described to me so it’s worth clocking that!

Most of the people I’ve spoken to have also continued with whatever they were doing as the warning signs were building up, thinking they should power on through.  I’ve spoken to people who were ripping up carpets at the time, up ladders fixing roofs or loading vans, they’ve all carried on with what they were doing.  And there-in lies part of the problem I think, we all think a heart attack is a dramatic event where we’ll collapse on the floor clutching our chests, (and it can be!) but, more often than not it’s a sensation that can easily be ignored and passed off as being nothing very important.

Not that I’m suggesting that we should run to our doctor every time we experience indigestion type symptoms, just that we should be aware that heart disease can start showing symptoms in a very non-threatening way.  In fact, I had had extensive tests done on my heart only 18 months before the attack and was told that my heart was ok, I went for tests in the first place because I suspected there was something awry.

I’m not telling you that tests are unreliable to scare you, but to make sure that you know that getting the all clear from Nuclear Stress Tests, Monitoring and Scans doesn’t mean there’s nothing that can go wrong.  I took my test results as meaning that my heart was perfectly ok, so when the symptoms started it was the last thing I thought was wrong.

I’m going to write a few of these blogs about heart attacks, hence the fact that this one is called ‘Episode 1’, but I’m going to try to cover aspects of the subject in a very real way so that you get a better idea of what they’re really all about and how they affect your life, keep your eyes open for more!

 

 

 

 

 

Autism: 4 things I believe contribute to the tragically high Suicide rate in Autistic people

Following on from the piece we did recently for ITV News regarding Autism and suicide, I think the facts and statistics speak for themselves, 66% of people on the spectrum have contemplated suicide, that is an alarming figure.

We can all do our part in giving people a hand up

 

What we don’t yet fully understand is why the actual suicide rate is so high within the neurodivergent population, although I have a few theories of my own.

  1. Having watched my own children grow up with the challenges that autism can create, and knowing the degree of mental health difficulties they ALL face, I believe that a proportion of their struggles relate directly to the everyday challenges they have to deal with just having to understand, and be understood, in a world that they find hard to relate to.  Autism can’t be ‘seen’ so it’s very difficult for ‘neurotypical’ (I hate that word, what is ‘Neurotypical’ anyway?) people to know that they may be having difficulty in communicating.
  2. A large number of people on the spectrum also have to contend with various sensory issues, constantly.  It may be a sensitivity to sounds, smells, textures, the list is a very long one.  What most of us don’t understand is that these sensitivities are not just irritating, the offending issue actually creates very real, agonising pain.  My children have a variety of sensory challenges and I’ve witnessed them contort with pain at  various inputs that they can’t cope with.  While they are out in the wide world they have no way of controlling their environment so these problems can ambush them at any moment.
  3. Another challenge is that people on the spectrum need to know what’s going to happen next.  They visualise everything in their heads, the problems occur when the reality doesn’t match their expectations, but, when does life ever pan out exactly the way we want it to?  Most of us adapt readily to the vagaries of life, imagine not being able to do that?
  4. Another huge challenge for people on the spectrum is actually accessing the help they need.  So many conventional therapies don’t work for them so even if they manage to ask for help in the first place, the likelihood of it helping them in real terms is very slim.  Fortunately, Autistica is doing very real research with people on the spectrum to find strategies that actually help, long may they keep up the good work.

I’ve only briefly listed a few challenges above, but try for a moment to imagine living in a world where there are so many variables that you find so unmanageable that your life is lived at the highest end of anxiety at all times?  We all experience stress, unfortunately, autistic people very often experience it on a totally different level, is it any wonder then that they often feel that they can’t cope any more?

The proportion of people living in our society with neurodivergent brains is actually very high, we need to be doing a lot more to create environments that they feel comfortable with.  A quiet room in shopping centres, colleges etc…would go a long way towards offering a calm space to collect oneself before trying to continue.

Autistica are an amazing charity that fund research into ways to help people on the spectrum manage anxiety and understand their mental health challenges along with a huge amount of other very important research.  If you would like to get involved with helping them you can join their ‘DISCOVER’ network to help them work with even more people so they can gain more insight, they already have 5000 people involved but the more the better.

We shouldn’t be losing lives to suicide and so much more needs to be done to help, let’s all join the army and shout for change….

‘Kingdom of Us’: Can a film really save lives?

 

Kingdom of Us

Life throws all kinds of stuff at us, some good, some bad, some absolutely earth shattering.    Paul’s suicide was one of those earth shattering events that left myself and my children in tatters.  10 years after the event and we’re still here, still in one piece and, remarkably, moving forward in spite of the fact that life just keeps giving….more shit that is!

I need to write a second book in order to tell the story properly (something I’m planning to do) but suffice it to say that the proverbial ‘icing on the cake’ was my heart attack 11 weeks ago, a defining moment indeed!

But in amongst all of the interesting events that have littered our lives over the last few years we made ‘Kingdom of Us’ with the incredibly talented Lucy Cohen.  Lucy is one of those people you meet once in a lifetime, someone who is so sensitive, empathetic, insightful to the point of appearing to be telepathic and so caring that she almost seems to be from a higher plane.

We met Lucy via ‘Unravelled’, the book I wrote a few years ago, in a roundabout way.  My literary agent, Andrew Lownie, introduced me to an agency called ‘Find a TV Expert’, through this agency a lady called Dee Kahlon found my profile and got in touch.  We met with her and she wanted to make a TV documentary about autism and introduced us to her preferred Director, Lucy.

It felt as though it was meant to be, love at first sight actually!  We adored Lucy and quickly came to trust her implicitly and we started filming.  The road to completing the film was anything but smooth and there were times when we all kept filming, really not knowing why.  There were no backers, no production company, no-one interested in the project which had long ceased to be a documentary about autism and had become, well, we didn’t really know what it was going to become.

And then through Lucy’s hard work and persistence a production company called Pulse became involved, they believed in the film and Lucy.  Funding came along a few months later and Lucy started to get the feel of what the final film would be.

It’s winning awards!

Four years after starting the whole process and 18 months of editing later and we have the finished article.  The film premiered at the London Film Festival, which was awesome and it won the Grierson Award for best documentary, unbelievable!

Now it’s been nominated for a BIFA (British Independent Film Awards) and we’re off to London on Sunday for the ceremony.  Who knows if the film will win but just to be nominated is too incredible for words, who knows what next?

In amongst all of this, Netflix became interested in the film long before the final edit was complete and snapped it up.  We were overjoyed, being available on Netflix meant that the film would be easily accessible globally and we hoped that it might just change some perceptions and maybe change a few lives.  The day of the release was a tense one for us, we had no idea how the film was going to be received, it could have gone either way.

But, we have been blown away by the response from people all over the world since it’s release on the 13th October.  We have received hundreds of messages from people thanking us for making the film and allowing people into our lives, and messages like the ones below have been so humbling but also, so awesome.

 

“Wow, what an amazing documentary. I’m in a real shitty place at the minute you and your family have really made me realise the possible devastation certain decisions could possibly have on others x”

 

“I watched your documentary today I just want to thank you. I have had suicidal thoughts lately & seeing the impact it has on children has made me stop”

 

These are excerpts from messages we’ve received and there have been so many others along the same lines.  We made the film in the hope that it might make a difference, we didn’t expect this but comments like these make the whole, difficult, four year process so incredibly worthwhile.

Thank goodness Lucy believed in the project and put everything into it for four years.

Thank goodness we all kept believing in her.

Thank goodness all the other people who became involved in the project believed in it as well.

We all hope that the film will be seen by as many people as possible and continue to make people think twice about mental health, autism and suicide

 

 

Autistica: An autism research charity that genuinely aims to help autistic people in a very real way

We aim to give the autism community a voice in everything we do. Through consultation and involvement we’ve made sure they don’t just direct our funded research, but autism science across the UK’  

I’ve been aware of Autistica for a very long time but didn’t know a huge amount about what they do.  Earlier this year I was speaking at an event at Coventry University and met a gentleman called Ed, he was lovely and told me a little about their work.  A couple of months ago we filmed a piece for ITV and Autistica were part of the report, we connected and I found out that they actually fund exactly the type of research I’ve always been an advocate of!

I’ve deliberately kept  a distance from all organisations as none of them seem to share my ethos with regard to autism, Autistica are different, they fund research that autistic people actually want.  They’re not looking for a cure, they’re not trying to change anyone, they just want to find ways to make their lives better.

I applaud that and would encourage everyone to join their ‘Discover’ Network, this is what they aim to do:-

Make a difference to people’s lives through research

Help researchers do bigger and better research

Cement the UK as a world leader in autism research

“Research is the only way to get the services we and future generations need. If we don’t get involved in research, nothing will change”

Autistic adult and parent

There are lots of ways to get involved and I believe we all should, check out what you can do to help and how you can be part of the revolution of change HERE

WELL DONE AUTISTICA, KEEP UP THE FANTASTIC WORK!

 

 

Kingdom of Us

After nearly four years of filming and production, the moment we’ve been waiting for is finally here!  It’s with a tiny bit of apprehension and a huge amount of excitement that we look forward to the World Premiere at the British Film Festival on the 7th October of our film about our journey over the last few years since Paul’s suicide.


Excitement because it’s been SUCH a long time in the making, and a tiny bit of apprehension because it’s such an intensely personal and real film which shows us ‘warts and all’.

We insisted from the very beginning that the film be totally real, no staging, no pretending to be something we’re not or vice versa, and that’s what it is…just us…as we are in real life.

We’re all so happy with the finished film and for that we have to thank the amazing Lucy Cohen (Director), not only a brilliant Director but an awesome person as well, we all love her dearly and really hope that the film may help in some way, if it touches one person it will have been worth every moment of the last four years.

Film trailer…

 

Tickets on sale here from 14/9/17