In cyberspace everyone can hear you scream

photo credit rickygervais.com

On 22^nd December 2014 the final episode of “Derek” will be broadcast on C4. So far the show has received an Emmy Nomination and this week a Golden Globe nomination for Ricky Gervais’s performance.

There is what can best be described as a range of views applied to the show. In the UK Gervais is viewed a lot less kindly by the critics than he is in the US. In many respects this is cultural.

Here we praise the underdog, who fights and strives but remains “in his place”. Becoming successful in the UK means you no longer stay one of us and become one of them, and the density of criticism seems to exist in tandem with the credit noughts on your bank statement.

In the US success is everything, especially when the story concerns people who come from nothing and rise to the top.

Ricky Gervais is the epitome of the American Dream. Here he is a critic’s nightmare. He by-passed both critical regard and censure with The Office which he co wrote and directed with Stephen Merchant.

The show grew through word of mouth from quiet beginnings to cult status on BBC Two. It was replicated all over the world because it resonated with audiences in describing real life, in all its uncomfortable glory.

So much so that it became an instant classic.

photo credit rickygervais.com

Now Gervais has risen to the point of success, which means his shows don’t rely on professional opinion. Which if you’re a professional TV critic, well used to framing viewing tastes, must be intensely annoying.

Also with so much of our media now dominated by tabloid gossip Ricky Gervais is a pointless pursuit. In the UK we lead the world in our prurient fascination with the personal habits of our celebrities. Their addictions, predilections, foibles, tastes and tantrums.

Ricky Gervais fails us here too, because he isn’t “battling” anything, and doesn’t really do much except work prolifically and post photo’s of his cat on Twitter.

As a wealthy man in his early fifties, Ricky Gervais bucks yet another trend of celebrity life. He has lived with and loved the same woman for over 30 years, the award winning producer and best selling writer, Jane Fallon.

Online the criticism of all celebrities can be found in plentiful supply. In discussion forums, blogs and Tweets, in online versions of newspapers in the comment sections of articles.

Having a polar opinion, whether informed or not, rules the day.

The film critic Mark Kermode discusses at length the phenomenon of the rise of online reviewers and the fact that a negative and waspish review is very much in vogue. Our collective Internet tastes it seems, run to the harshly cynical much more quickly than to the positive.

When it comes to Derek it was the fan base, which led the field in securing its success once again. The online ground was so febrile towards Gervais, the narrative so set, that when I posted my interview with him before the pilot launched, it was me who was picked apart and my motives questioned. Sections of it were lifted and quoted, uncredited in negative pieces.

This basic fail in journalistic courtesy occurred, I can only assume, because I liked the pilot.

“Derek” is a show like any show. Its polarising effect is brought and wrought by its creator. “He championed cynicism and now expects us to believe he cares? He mocks, and presents us with fake compassion?” is the refrain.

Well, yes because the theme of compassion has always imbued his writing for TV, and as a filmmaker.

The confusion I feel arises from the duality of his work on The 11 O’clock show and from the challenges of his stand up.

photo credit rickygervais.com

In The 11 O’clock show, Gervais appearing under his own name played a bigoted man pricking holes in the PC tidal wave of the 90’s. This has informed our view and an interesting dichotomy for many people, in these highly literal days of ours.

Irony is seeing its own backlash now as we wrestle and struggle with the notion of whether irony is actually bigotry, dressed as irony promoting actual views.

In his stand-up Gervais again assumes a character, which assumes a position of ignorance, satirises perceived wisdom and deconstructs established truths.

If you remove any stand-up material from it’s context, one where a thought is taken for a walk with an audience comprised of those who know the terrain, then you rely upon examination through the prism of uniformed analysis.

Subsequently, the refrain of “He said what?” spreads exponentially in the nuance vacuum which is life online, where we render ourselves judge, jury and executioner. 

But why pick Derek? Why this story now? Is it to ameliorate his use of a word, online that he shouldn’t have done?

Well no. In fact Ricky Gervais promised C4 over a decade ago that should he decide to turn the character of Derek into a series, that he would broadcast it with them.

It’s “unlikely” that in making that promise, he had the ability to see into the future. Which is good really, as our present, is one that brings death threats to anyone typing 140 characters, which the mob deem to be offensive.

We can challenge and we should challenge. I did and still do.

However when we arrive as a slavering mob, we diminish valid discussion around language, to incoherent screams of rage.

Because in cyberspace everyone can hear you scream.

I feel the reason for Derek now, is one of reflective maturity from the writer. 

If you reach the peak of your career and choose to look only to repeating your success then isn't this playing to the formulaic blueprint, which bastardises art, completely?

This notion of repetition ad nauseam, is a financial pursuit not an artistic one. 

There is a risk even for a writer who knows a commission is more than likely.

To me the choice to keep taking risks creatively is to be applauded, especially when the story concerns a family of people who society with its “flesh and perfection” obsession would rather forget. The risk in ditching irony and cynicism especially when it has repaid you well is also something quite extraordinary.

photo credit rickygervais.com

Derek has meant a great deal to a great many people.

People who are ‘othered’, who have been rejected, who have been hated and who are ignored.

The show resonates with paid carers, who many people either look down on, or believe to be an abuser.

It resonates with family carers, who fight every day for their elderly relatives, or their vulnerable children, or in my case both.

Diagnosed or undiagnosed, disabled or different, Derek with his inherent vulnerability, speaks eloquently about our lives. This opinion is as valid as any number of TV critics, because we have lived experience.

We recognise our truth in Derek by a writer who knows that if he phones, all broadcasters will take his call.

In reviews, in blogs and on line we can speak truth to power now but when power speaks the truth about us, the forgotten, neglected and abused us, I’m very happy to listen without prejudice.

Asperger's and me.

UPDATE - 

I wrote this blog in December 2014. 

On the 27th October 2015 I received my official medical diagnosis of Autism. 

*The term Asperger's Syndrome is no longer applied (As per the fifth edition of the Diagnostic and statistical Manual of Mental Disorders (DSM-5)

Today’s post is very personal and I’ve gone back and forth about writing it but feel it may prove useful so I’m embarking on trying to explain it here.

I learnt recently, that I probably have *Asperger’s syndrome.

This apparently is something that comes as no surprise to my family and something which really makes no difference, except in helping me to understand things about myself, that have always been confusing.

This isn’t a self-diagnosis, this is a provisional diagnosis in lieu of a medical diagnosis, from a highly qualified NHS mental health professional, who has known me for a long time and who is counselling me through a difficult time. 

It has only become necessary for her to give this a name now,because I’m struggling so hard to deal with something very difficult. 

That is the essence and relevance and importance of any diagnosis. It is there to help.

I’ve suspected it for a while. A couple of years ago I took the University of Cambridge online Autism Spectrum Quotient (AQ) questionnaire.

It’s a well-respected indicator test and as a high proportion of my immediate family are on the autistic spectrum, I thought it would be interesting for me to take it.

I scored 97%.

I’m not given to self-diagnosis, and although the online test was useful for me, I haven’t sought a formal diagnosis previously. As a carer it fell to the bottom of the long list of other things I needed to do.

This diagnosis was brought to me in the course of discussing something else entirely. I think it was the very best way for it to have happened.

Whether you follow me on Twitter, have read any of my pieces about disability or heard or seen the interviews I’ve done about my campaigning; you’ll know me to believe wholeheartedly in the value of diagnosis.

My experiences with my two children, who are both on the autistic spectrum, have taught me that diagnosis, whenever it arrives is an individual issue, and one which affects the person and their friends and family in different ways.

Some find the notion of difference too challenging to bear, some believe disability must present along with a tangible indicator such as a wheelchair or a cane in order to be credible.

Some further believe that there is a pandemic of over diagnosis globally, which is anathema to them ; “a drain on crucial resources” and evidence of “a nanny state gone mad”.

These people are what I like to call lucky.

I can highlight here the difficulties I’ve faced at length.

Primarily, but not exclusively, my ongoing struggles with high levels of anxiety, sensory defensiveness, and fixations to the exclusion of everything else.

All of my life, I’ve found human relationships to be the most wonderful, terrifying and mysteriously complex things that I’ve encountered. It can be argued that everyone does. My problem is that I find it more difficult than most.

Put simply the more you can do, the more the world expects from you.

I’m truly fortunate to have been born to a mother who was all patience, kindness and truth.

Her wisdom and unravelling of the complexities of human relationships, minimising of my fears and straight forward non judgemental explanations of life went a long way to giving me the tools I needed to face lots of challenges.

I’m fairly gullible and easily hurt and fixate on fairness and slights. I’m also capable of verbal pugilism, insensitivity and forensic deconstruction of others motives and attitudes which is exhausting to be in receipt of. I’m also quite adept at protecting myself, by presenting a much colder front than I feel.

My mum gave me the greatest gift though because she taught me to be empathic. To see others needs as equal to our own and to understand that everyone is struggling equally with the human condition.

So when I see bullying for example or cruelty, or cynicism on line or in life. I find it hurtful and can reduce me to tears mainly because I know harsh assessments of others, are a choice.

Empathy is a skill you can learn if you keep at it.

Sometimes I fail but we all do.

When you have a truth about a condition relating to yourself proffered and then confirmed by those you trust and love the most, it prompts a great deal of introspection and reflection, over your life lived thus far and your choices.

Any immediate liberation from pain of unfairness targeting me, I’ve ruthlessly tempered with recognition of when I‘ve been fixated and detail obsessed to the exclusion of others feelings.

That’s an empathy fail on my part.  There is a great deal of checks and balances occurring in my mind currently.

I feel my detail obsession has made me a good campaigner and I revel in the minutiae of detail in terms of the human condition, which led me to want to be a performer. Drama school was a delight because I was able to immerse myself in the lives of others and utilise the tools I’d honed over the 19 years I’d been a confused human, learning and mostly failing, to fit in, until that point.

It’s a myth to assume those with ASD are incapable of creativity.  From the famous artists, writers, performers and filmmakers through history- to those we know and love personally at art school, drama school and beyond.

Creativity and ASD are entwined permanently.

I’m very lucky to have great friends and beyond lucky to have a beautiful family. I can’t begin to explain my feelings for my husband, except to say that I love him very much.

“But why” is a question I’ve asked of people I trust all my life and been so fortunate to have encountered, mostly patient explanations.

To explain myself in more detailed aspects would be too painful at this point.

The internet hasn’t proved to be a kind friend to me always and I have been somewhat adversarial in my approach too.

I must admit to feeling trepidation in terms of how this blog will be received. However it may also serve to help someone in a similar situation to my own, so for that reason I offer it now.

In either respect I feel it prudent to limit myself to highlighting just one aspect of the traits I have, in order to inform this blog.

It stems, as ever, from my usual approach to ASD, which is to offer a view of a widely misunderstood condition, particularly under recognised in women and girls.

It’s also, as always cathartic.  I’m sending love to anyone who is experiencing diagnosis, to their family, their carers and their friends. 

My hope is that people are able to listen without prejudice when someone offers news such as mine.

There is no shame either in diagnosis or disclosure.

All that anyone really needs to live a full and happy life, is supportive friendship and love. 

Give the pledge

As we slide inexorably towards a general election, there is a lot of talk about our processes and systems, representation and choice.

What we will also see in abundance is the ubiquitous PR enhancing photo-op and no one is more in demand for a political photo-op, than people with a disability.

It yells compassion, understanding, inclusion and democracy at it’s finest, yet where are disabled people when it comes to policy? Well HG Wells said it best. He was writing not about our heart of democracy and those who purport to do it’s bidding.

He was talking about Martians who swooped and then fed on us unsuspecting humans, but it will fit here “ slowly and surely they drew their plans against us”

You only have to pick up a tabloid these days, or any or the previous hundreds of days since the welfare reform bill was mooted then framed, proposed and legislated (resulting in disabled people getting booted) to know that disabled people and carers are the scapegoats de jour.

Welfare reform sounds so sensible, so necessary and so plausible, yet a quick scan of any number of disability rights campaigning blogs or numerous pieces in Society Guardian and others, will tell you the real, staggering and “inconvenient” truth.

Disabled people and carers are being stripped of crucial benefits. Many are committing suicide, more die as they wait for their assessments telling them that they are fit and able to return to work. 

Many more are left in abject poverty as they fail the tests for the benefits which their conditions (and a decent society) make theirs by right and makes our collective responsibility. 

These benefits are often in work benefits, enabling disabled people to do just what we all want to do- work and live.

Not even Margaret Thatcher in her tub-thumping, union clumping and fat cat plumping zenith, would have dreamed of this.

So there we have it, canon fodder for these days of austerity presents itself as the most vulnerable people in society. As determined by those paid to protect their rights..

I have a proposal for any disabled people and carers out there who see the cracks in the ground appear and find a shiny faced and slavering, earnestly emoting candidate, darkening their door.

Tell them this, either you won’t oblige or if you feel less hard hearted tell them you might, if they first autograph a small pledge which you feel may be important to your future and the futures of approximately 11,000,000 of your fellow citizens:

“I the undersigned pledge to endeavour not just to forget disabled people and carers once the election is over but instead, agree to add my name to a list of MPs who are in agreement that no policy which directly affects disabled people and carers should henceforth be drawn up, without disabled people and carers being involved.

I call for a committee of independent disability rights campaigners and groups (with no financial input from government) to be a working group who will oversee all policy decisions directly addressing disabled people and carers, in the future.

I also agree to be held accountable if the aforementioned group is not assembled within 3 months of my election.

Because I actually do care and this is just the sort of thing that made me want to be an MP in the first place”

So there it is a small pledge in exchange for free PR seems like a good bargain to me.

If they have forgotten or intend to forget, then I feel there is no harm in reminding all candidates that really they work for us, all of us, every single day. Nor does it  hurt to remind them all that their minds, so full of ameliorating promises, are not immeasurably superior to anyone.

Will you

Will you know the truth of being held by one who loves you

Do you know the beauty that you have,

Can you see the joy you bring to us, who truly know you

Have you all you need to make you free.

If you feel in pain do others see and understand you,

Do you feel a trust for those who do,

When I let you down do you know first that I am sorry,

Can you feel your strength that we all see.

Do you know your laughter bathes my heart in complex healing,

Can you feel release from all regret,

When your eyes find mine, do they bring comfort from confusion,

Does my promise live in constancy.

Did I do enough to give all that you have needed,

When you turn away do you still see,

Will the world evolve to see you only as I see you,

Can the fight be won eventually

When I take your hand and say the name that we both gave you,

Do you feel the truth that we believe,

If you ever need to know what love is, know this always,

Love is you, and you are all to me.

What's next.

The song above is one of Emily's favourites. It details sadness but also optimism and it's been on my mind for several weeks now. Mostly it makes me think of the day Emily left and how that time, one of the most difficult and painful we ever lived through, has turned around now so positively and in ways I couldn't possibly have envisaged. She's thriving, she's achieving and she's embracing her life so completely that I smile every time I think about it.

It gives me hope that singing a new song can be positive.

Both of my children have enormous courage a trait that they inherited directly from my Mum along with her stoicism.

This month I’m going to be 48. It’s not an age traditionally deemed to be a landmark birthday like others I could name, but won’t because they are so far away it makes me depressed, but for me this birthday carries it’s own significance because of the age my mum was when she was diagnosed with Alzheimer’s.

She was 68, twenty years older than I am about to be and it makes you think. Well it’s made me think anyway.

The last twenty years of my life I’ve spent I hope, both well and productively. 

Not in terms of building a CV and a glittering career, no 'I’ll give you that son', but in caring for and loving the people who through no fault of their own needed caring for and who it was an absolute delight to love.

It hasn’t always been easy and it hasn’t always been difficult. It’s just been my life and the planet is mostly populated by people like me who are neither remarkable nor high achievers, just people pottering around occasionally bumping into challenges and getting on with them.

Anyway….My point is what to do with the next two decades.

My girls are now getting on with their lives and this is so delightful to me in a way that all parents will recognise but only parents of children with disabilities will understand.

In 2012 I was lucky enough to interview Warwick Davis and Baroness Tanni Grey Thompson for the Guardian and they both had the same gift in life. Brilliant parents, who raised their children to know, not just to believe, that their lives were theirs for the taking.

This is an ideal for all parents of disabled children to aspire to.  I’m not suggesting that all disabled people can be a gold medal winning paralympian, or a famous actor,  a notion which is deluded at best and frankly dangerous at worst; as it offers a notion of equality of ability which we know isn’t always the case.

I’m just saying that letting your disabled children go, after you’ve equipped them with a belief in themselves as individuals is crucial, irrespective of ability. We all need to nurture and promote our children’s self-esteem.

For me the fear of Alzheimer’s is one which walks beside me but one which I can’t look in the face all of the time.

There’s just no point. This, as yet, incurable and devastating disease will make its arrival known, if it chooses, or it may pass me by entirely; either way it’s not my decision.

It would be a kind world indeed if worrying about potential events stopped them in their tracks.

As I move into the next two decades, if of course I’m lucky enough to realise them, I’m going to try and do so with hope and with optimism, because I choose to. 

Cynicism is an easy blanket to cover ourselves with and we do live in cynical days.  I’m not exactly sure why, but possibly because we have in the main achieved and evolved so much with the staples of life so readily at our disposal that we have the time to question everything and to be guarded about being fooled.

This is healthy in respect of those who govern and inform us, but it can seep through into our dealings with one another and this lack of compassion and empathy, this fear of kindness and this austerity fuelled disinterest in vulnerability, is not healthy at all; to us as a collective, or to us as individuals.

I still hope and I still dream and I’ll still fume and I’ll still believe. I may be an old bird who is about to become older,  but I think I’ve been lucky because my life has been shaped by love.

Not a CV plus in terms of career I grant you but I don’t have a single regret and I wouldn’t change a thing.

To be or not to be....

To be, or not to be, that is the question—


Whether 'tis Nobler in the mind to suffer


The Slings and Arrows of outrageous Tabloids,


Or to take Arms against a Sea of Wrinkles,


And by using Botox end them?

To die, to sleep—


No more; and by a sleep, to say we end


The back-ache, and the thousand

Natural shocks


That Flesh is heir to? '

Tis a consummation


Devoutly to be wished.

To die, to sleep,


To sleep, perchance with night cream;

Aye, there's the rub,


For in that sleep of death, what snores may come,


When we have shuffled off this mortal coil,


Must give us pre-nuptual clause.

There's the Respect
 Party

That makes Calamity of so long life:


For who would bear the UKIP and yawns of time,


The Oppressor's wrong, the proud man's

Great British Bake Off,


The pangs of despised Gove,

the Law’s delay,


The excellence of The Office, and Cardinal Burns


That patient ferret of the unworthy takes,


When he himself might his home brew make


With a bare Bodkin?

Who would these Farage fans bear,


To grunt and sweat under a weary life,


But that the dread of something after death,


The undiscovered suitcase carousel, from where Jason Bourne,


No Traveler, returns,

Puzzles the uncontested Bear Grylls,


And makes us rather bear,

Those ills we have,


Than fly to others that we know not of?


Thus Conscience does make Noel Cowards of us all,


And thus the Native hue of Resolution


Is googled o'er,

with the pale cast of Thought for the day,


And enterprises of comment is free pitch

and moment,


With this regard their Comments turn awry,


And shout the name of fracking.

Soft you now,
The fair Ophelia.

Nymph, in all thy lads mags,


Be thou all my sins remembered.[4]

In the garden

Recently I've been having a "bit of trouble" as Frank Spencer used to say.

The trouble itself isn't the subject of this blog, it's the catalyst. I'm hoping that by writing it down the ameliorating warmth of catharsis will kick in and I'll feel a bit brighter.

There's only one person I want to see at times like these and that is impossible. Death has that way of rendering infinite unavailability to those we love.

Even now, three years after I said goodbye for the last time, she's still the person I think of first in good and bad times.

I was walking and crying on Sunday and more than anything I wanted to be sitting in her company.
In the garden of the little house that she'd been able to buy for us after her divorce.

It was just a rotovated plot then, which she planted with new plants and with a small number of cuttings that she tended carefully from the garden of our old house.

These plants were a connection she had to my brother who had tried to take over the tasks left by our father when he'd left.

Michael's heart condition was gathering pace by then.

It was taking his breath, which should have been being used casually, to chat up girls, but instead was being fought for furiously and secretly just to keep going. His failing heart was weakening by the day but as it was made of integrity he kept going. No one knew for a while, how ill he was.

So these cuttings were more than precious.

I understand gardens as memorials.

They capture both the stillness of loss and the renewal of life through the plants and the seasons which dictate them. Domestic gardens are full of the effort and interest of their owners and it's almost as though they absorb and reflect those attributes with serenity. It's a reciprocal arrangement and research shows the beneficial effects of gardening on mental health.

So that's where I'd like to be.

Yet the sight of a tearful stranger; a woman who you don't recognise, turning up on your doorstep and asking to let her sit in your garden can be overwhelming, so I didn't think I'd try that.

I just walked on.

I suppose it doesn't really matter where I am. The memories of mum still live in my mind that's  the sanctuary I crave really because love isn't a space, a place, a building, or a grave.

Those are just the structures which take you to memory.

As long as I have those she'll be beside me.

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Music and lyrics

Firmly put back in her place, she wonders, does she know that face,

producing words of pain and haste,

Depressingly familiar.

Time obscures some memory, the truth of what had ceased to be,

It lives this act of cruelty,

Through music.

Does he remember that they said, “The ending of the book ahead,

The pages turned and pages read,

We’ll write it”

A taken chance and now it's done, the truth of what they were, is gone

The battles fought aren’t battles won,

Just shadows.

This woman here, I used to know, she falls as she attempts to go,

Still smiling daily, if as though,

Not broken.

And whilst he’s breathing through the pain, of all the loss, of secret gain

Outside the gentle summer rain,

Falls silent.

When did his life become his plight; a dead man’s walk into the night,

A tortured dream of dynamite,

Ignited.

Now everything that’s left unsaid, a fleeting thought, an unmade bed,

A rainbow's end that empty head,

All broken.

Caring, comedy and me

When you’re a carer your life is no longer your own through necessity.

As a sandwich carer for my mum and my two daughters for twenty years I understand this well.

Emily who is now 16 was diagnosed with learning disability and autism at three years old and with epilepsy at ten. Lizzy who is 19 was diagnosed with Asperger’s syndrome at ten and in between my mum was diagnosed with Alzheimer's disease at 68.

Being primary carer for them all filled my days and nights.

Life as a carer can be extraordinarily challenging but humour has always been crucial for us here, in terms of getting us through.

As I detail in my stand up, the humour comes from the world misunderstanding or expecting the girls to work to nonsensical rules like queueing. 
When you take social rules for granted it’s difficult to imagine how ridiculous they are for many on the Autistic Spectrum who don’t.

  

Taking Emily to the cinema for the first time at 4, involved walking in, buying the tickets, walking to the door of the auditorium, her seeing countless rows of people in the dark staring at the light like automatons and then her turning around and walking out.

Quite sensible really, if you haven’t a clue why you’re there in the first place.

Other people’s reactions are also funny. 
You never understand the reach of the film Rainman until you share with friends and family that your child has been diagnosed with autism.

“So what’s her thing” is a question I was asked a lot post diagnosis.

“Her thing?”

“Yes you know can she draw Westminster Abbey in perfect detail from a photo she’s seen only once or is she any good on the piano, or um…does she know the timetable of planes…or..”

“Well she can scream for 8 hours without stopping…but I don’t think that makes her Mozart”

Savant ability as demonstrated in Rainman accounting for his unique and multiple skills, only exists in a tiny percentage of those children and adults on the autistic spectrum worldwide. But it’s a thing now that people hold onto often when they don’t know what to say. It’s a great film and in the days before autism entered my life one which I also embraced as a definitive explanation of a condition I didn’t understand either.

After Emily was diagnosed I read everything I could.

I tried to take on board the advice in how to manage meltdowns. For those who don’t know a meltdown it’s very similar to a toddler tantrum rather like the depth and length of a Siberian winter is rather similar to the first dusting of a UK winter snowfall.

I read up on how to manage them and tried a time out approach in trying to make it clear to Emily that two bags of crisps were not an option.

I used the word no. No isn’t a great word for people with communication problems. Emily was at this time almost exclusively selectively mute. So her response to No as a word without negotiation was to take a deep breath and start screaming.

I was resolute to attempt time out. It worked apparently. Everyone with neurotypical children told me it worked and at that time I didn’t know anyone with learning disabled children.

So I tried it.

This involved me carrying Emily to the dining room as she was still small enough to carry at this stage and then I stood on the other side of the closed door.

Wrong footed momentarily. Emily was silent. Then she began hurtling herself at the door. I held it firm.

Then I tried to remember what the advice was. ….Bang bang bang…Emily was making the door frame shake .

In theory a time out meant a minute of placement of the child, away from the object that they want with the length of time to be equivalent to the child’s age. ….bang bang bang…..Emily was four so four minutes?… Bang Bang Bang…….I was struggling to hold the door now.

“No wait hang on she has an developmental delay of two years so ….so should I adjust the time accordingly to two minutes?”…..Bang bang bang…..I was trying to work out the time/timeout/age/developmental delay ratio when I noticed Emily red faced and sweating walk past me on her way to the television eating the bag of crisps.

She’d given up pounding on the door when she’d spotted that the patio doors in the dining room were unlocked and so she exited via the garden and back through into the kitchen.

I decided timeouts weren’t for us.

I spent my days in meetings about the girls or appointments, or trying to sort things at school or giving mum her medication or taking her to appointments or doing her shopping and her cleaning, cooking her meals then the school run and home.

At night after caring duties were completed usually about 10.30pm on a good night and much later on a bad one and in the three hours before Emily would wake up, I'd write. After a few years I'd written, a screenplay, two TV comedy dramas and a sitcom pilot. I've also nearly finished a comic novel.

Mum had moved to a nursing home as her condition intensified and just before her 78th birthday, after a decade of living with Alzheimer's she died. She was one of the most extraordinary, beautiful people I'd ever known.

So my life changed again and the girls were growing up and their needs were changing.

   

The challenges of raising a child with Emily’s level of need intensified when she hit puberty.

A neurotypical teenager will shout, stomp out of the house and moan to their friends.

When you have a learning disability this isn’t always an option and so the raging hormones and need to detach are compounded by a need to be cared for.

In Emily’s case her challenging behaviours, which manifested as violence, became unmanageable for her and dangerous for us and we reached a critical point where her living in an assisted placement became urgent.

It was the right decision and it was the only decision and in reality should have been one we made years ago.

She is now accessing life in a way we had so hoped for and compared to her refusal of school, respite and to even leave the house in the three years before she left, to her being happy and fulfilled now, makes it a joy to witness.

Because she is thriving and achieving and embracing life now in a way, which makes me know that the most difficult thing I've ever had to do as her mum, has been absolutely the right thing for her.

On her 15th birthday at home she had a birthday cake, a bouncy castle, but no guests.

On her 16th birthday in her new residential school, she was dancing with a boy.

Once Emily was settled I was able to think about what this seismic life change meant for all of us. My husband Phil has his career, and Lizzy though still needing us, is realising a level of independence, which means my caring duties for her are also reducing.

At 47 changing your life at all is daunting but my choosing to pursue creativity in one of the most difficulties arenas for expression of ideas, was a seductive notion to me.

Creativity had always been a feature in my life. I’d graduated from drama school in 1989 and hoped to go back into acting when the girls were older. However their needs and those of my mum had led me to shelve my creative ambitions I thought permanently.

The beauty of stand up is that it is open to anyone. It’s not age specific it only has one criteria- be funny. It brings together writing performance and ideas in an accessible way.

But considering doing stand up was a double-edged sword of anxiety.

The notoriety of raucous comedy clubs and merciless hecklers was daunting. I was consumed with worry whether my stories are too niche and my experience too specific for audiences to relate to.

Everyone started somewhere and everyone knows the agony and the ecstasy of creative endeavour whether to world acclaim or the book you write at night in secret, when your normal working day is over.

It took me a while to look for my first open mic spot. I know what that means now,I didn’t then.

Simply put it’s an opportunity for unknown acts to get up and try out their stuff. I booked it a couple of months in advance then sat down rewrote everything over and over again until I felt happy.

 Standing up to talk for the first time was frankly terrifying.

I didn't think I could get to my feet when the MC called my name but I did and halfway through I knew that this was something I'd keep being terrified of and keep doing. The crowd in the club were amazing and so supportive and crucially they laughed when I hoped they would.

I’m at such an early stage with only four gigs completed and it will be a while before I’ll know whether I’m any good or not, but the immediacy of knowing whether you’re funny or not, because the laugh comes or it doesn’t, makes you want to learn as much as you can as fast as you can. This only comes from a lot of stage time.

I try and give an honest account of caring whilst totally respecting the crucial role that carers play in society, and those I love who it’s been a privilege to care for.

I’m mindful too that we are living through unprecedented times of societal change in attitudes towards disabled people.

I feel there is room for all voices really and I’m loving every minute of finding out.