Sunday, 25 January 2015

If you Build It; The Treehouse At Number 9


Someone clever told me that I should use more pictures if I write a blog post about our musical story App The Treehouse at Number 9, so that anyone who stumbles here can catch up and join in.

So this week more pictures and more good news.

We are still happy and shocked at the 15,000 lovely people who have done as Cee-Cee here requested, and downloaded our App.

Across the week we have had bloggers and tweeters, mums, dads and carers, strangers and friends all helping the momentum to build.






Genuinely every download and message lets us know that there is an audience for these children and their stories. Which is more than we dared to hope for.




On Thursday I was at an evening talk about TV tax breaks, when I received some amazing news about our latest download figure.

Having realised quite quickly that this talk was not quite what I had expected, the call I got from Karen and the subsequent catch up emails put paid to any concentration remaining at all.

So while clever people talked about budgets and percentages, all I could think of was our number...


Does that say 30??

Did you say 30?!

Does that mean we have 30,000 downloads!!!!


And the answer was Yes.

We continue to be very moved by every download and message, which is driving us to think about what we can do next.  With a quiet-ish launch only just getting into its stride, it is clear that there are families out there who want to swipe, listen and read about our happy, positive kids and their adventures.

As a mother of a special boy I know the pride that he has in just the name of our gang, our Genies, because of the vocabulary I gave him that most children would never need. He has a script that is custom made, ready to answer back with pride should the need arise:

"I have two rare genetic disorders. That means I have a little bit more on 22 and a little bit missing on 18.
My genes mean that my body and mind sometimes work differently. But I can do everything that you can."


And so can our Genies

Have you downloaded the App on your iPad so you can meet them yet?  If not please do so here

And keep sharing with your friends and ask them to spread the word, also review it if you like it, and please feel free to tell us what you would like us to do next.

Remember we don't make money from this App which is why every new person who gets in touch is helping us in loftier ways.  Your support helps to raise awareness and spread the approach that we have taken, that difference is a good thing and it's time to bring it to the mainstream in children's fiction.

So come and join the 30 club, thanks and love from us and have a great week!

xxx

Sunday, 18 January 2015

Treehouse Dreams and Links www.treehouseatnumbernine.org

I wonder if we know the moments where everything changes? If at the time we can feel a ripple in the tapestry that says we are veering from the path we were on and branching out to something new.

If I look back at my last decade (which regular readers will have seen me doing a lot) I have had some awareness at times that things were changing:
Becoming a mum of one while still in a high level TV job.
Becoming a mum of two while in between jobs.
Being a mum of two with a complicated and poorly new baby and knowing that something irrevocable had gone for ever.

But then life slowly and surely reformed. The career was kickstarted, the hospital visits began to slow down and we regained a real semblance of being a typical looking family. Able to pay the bills, balance the work and home, see both our boys growing and developing and managing, each in their own way.

And how lovely that has been, mostly the same but with new bits thrown in.  A life like everyone else's.

Alongside work and home, I have quite publicly been a fundraiser for the charities that have helped me along the way and that is nothing new.
Something else that I have done quietly however, is getting louder and draws a line from that struggling mum to who I am now.  A new Sara into the mix - writer of children's stories and books.

In the last month friends and family have been heeding the calls from me and my amazing friend Karen Shooter to like our new Facebook page Treehouse on Facebook and to follow us on Twitter Treehouse on Twitter.

All this has been done by our wonderful supporters, often without knowing why, so what we now want to do is explain.  Firstly though we need another favour.

Please rush to the App store and download (for FREE) our musical ebook story app Treehouse at the App Store

Having done that we would love you to rate and review it glowingly so that we can continue to spread the word.

Because this App is a bit of a dream, one of the things that Karen and I have been quietly doing for the last 8 years.  As we explain here on the page put up by the charity who we support Treehouse on GDUK

From a story that sat alongside some others we had, our special gang of kids The Genies were lucky to be put through the prism of the new company CAAST. They were introduced by my lovely husband because they were looking for a story to test some amazing new tech they had.

I can't really remember sitting down and writing these stories if I'm honest.  I know that I started to rhyme as I walked Louis in his buggy, frustrated by the lack of proper role models on the page for the gorgeous and different children that I was meeting because of him.  And that I was inspired by the films I showed in the assemblies I did for Jeans 4 Genes Day.
I remember meeting with GDUK and asked if I could help them harness the power of stories to help the families and affected children and supporters that they had.

Then asking for a favour from Karen led to our friendship becoming something professional too, as we slowly became creative partners - her making all my scribblings look beautiful, fun and impeccably designed.

Little by little, piece by piece, we quietly carried on, until last week when we had a press release go out from our friend at Neat PR to launch the app officially.  We decided to look at the download figures and had a very big, and very lovely shock.

That with just a bit of Facebook and Twitter, and a soft launch upload to the App Store, we had somehow enticed over 15000 people to download our story.

15000!

Even before our PR plan began.

Fuelled by happy shock, what we hope is that maybe other parents ARE looking for something different too.  Something fun and bright with gorgeous music, sweet narration and a story that makes heroes out of everyone in it.
We think they might be out there, just like the mum who got in touch on twitter on Friday, with a daughter who has a similar condition to one of the Genies.  She said her daughter loved the stories and asked when could they read more?

Wow, and good question.  The answer to which will come from us daring to look at the future.

So this blog is linky and long for a reason, because it's time for us to shout out loud and clearly ask for your help.

Please will you:

  • Take your iPad and DOWNLOAD us now here Treehouse at the App Store
  • Then go back to the App Store and RATE and REVIEW us (kindly we hope)
  • Then SHARE SHARE SHARE with anyone asking them to do the same
  • Please find the time to BOOKMARK our Website because news will appear there when we have it 
  • And if you have one, please consider opening your BLACK BOOK to us, especially if it contains real contacts to a publisher, or a TV producer, or a teacher at a school that might want a visit, or to someone high profile who also knows how difference feels.

Although we deliberately put this up for FREE, a lot of people donated time and expertise to make it look so professional.  We would love to think that we might continue doing what we have started here, slowly but surely building something real, for now alongside the rest of our lives.

We welcome you all to be a part of these dreams and we can't wait to see you there
Just imagine what we could all achieve together.


Thursday, 6 November 2014

What it looks like when the system is broken

I write this article as a woman who has said a sad goodbye to her good friends and waved them off to their new life outside London.
I write this article as the mother of a little boy who has lost his best friend to a new school and his new life.
I write this article as a mother with a special boy who hasn't yet applied for a statement, depressed and disheartened about how broken the system seems.
This system that has caused my friends to have to sell their house in order to give their special boy a future, because nobody here in the LEA wanted to help him to have one.

What is a parent to do when a child who has spent years trying and struggling is refused an assessment?
What is a school to do when the LEA receive an authoritative and impassioned argument and request for help, yet decide not to consider the support these wonderful teachers need for this boy?
What is a parent supposed to do when the extra lessons, the hard fought for diagnosis, the therapies and battles over homework, the support system of his peers, and their parents, isn't enough to help him to fulfill his obvious potential?
What is a school to do when a teacher, one teacher in a class of 30 kids of mixed abilities and numerous languages, disparate needs and various challenges, cannot devote enough time to this sweet, sensitive boy whose confidence takes a battering day after day?
What is a parent to do when the appeal fails again and the future suddenly, depressingly, has to be taken into their own hands?

I'll tell you what they do.

The school resign themselves to a broken system, but do so quietly in the safety of their classroom, hoping the next one will be different.
And the parents battle to write Plan B and upend their lives in doing so.

I suppose the authorities would say that these are the lucky ones, who can sell a house and find a new one, who can source and fund an amazing bespoke school who exist to make up the lost years for children like this.  These lucky parents who have jobs that might bend and lives that can be picked up, well they don't need the system, so it's probably all for the best.

What they don't realise is that just because you can find a way to reorder your whole life, doesn't mean you should.

Anybody who met this sweet boy could see that all he needed was support, someone to help him focus and achieve his potential.

That support was there from the teachers and school, but the structure and system that is there to bolster these professionals let them down too.  Everyone who had genuine power for change shirked and shimmied and from where I'm standing, didn't give a damn.

So my friends, these smart educated parents, who attempted to work in the system as it stood, made one mistake, which was to assume that any of it worked properly at all.

They decided not to cheat or shout or deceive, but to hope and  trust instead.  Trust that the LEA would listen to the teachers, or psychiatrist, or ed psych or any of the other professionals put in place, and be lead by their conclusions.

The result of that trust was that after a string of refusals, delays and the loss of any hope that things might change, my friends had no choice but to cancel Plan A.

To move away and find a new way, two new schools, four new futures far from where they thought they would build their lives.

Shame on you Barnet LEA.
Shame on this new system that is as broken as the last.
Shame on you all for quietly removing yourselves from the responsibility of the children in your care and assuming no one would notice.

We do, and so I repeat
Shame On You.



Tuesday, 4 November 2014

To do or not to do lists

this is a first

getting up from a busy head that won't let me sleep
eschewing the post it note and pen that scribbles the items on the list that usually helps me to clear enough space to sleep
and coming here, to the spare room, opening my laptop, and writing a blog I keep forgetting to come back to sufficiently for any kind dwindling readers to continue to pop by

my work days are full of notebooks and slate lists and highlighter pens and diaries and nearly enough hours in the day if I can just string enough minutes together to make up those hours

my home days are full of the stuff of menial life like eating, shopping, organising the family, the diaries, the dates and distraction techniques for when daddy next travels, and the childcare extras for those times due to not having managed to clone myself yet.

around this, the gaps forced open for the things that make me smile, like exercise and helping at school and blitzing through the replies to the emails marked unread, the family history just beginning and oh and the lovely bits of writing and charity work that are beginning to have a life of their own.

then there is my constant need to clear the clutter of drawers and cupboards and toys and clothes, in order to streamline our lives.  that urge doesn't seem to be going any time soon.

and the next series of Orange Is The New Black is waiting for us, our current joint happy sofa viewing, squashed into the weeks that we are both in the country and awake

lists and more lists to achieve and ignore

and a tired blog post from somebody who really should be asleep



Sunday, 14 September 2014

Trans-season stock take


The kids are back at school, our lovely 2 week holiday is a distant memory and I have plunged back into the chaos of work and homework and travel and running my house and our lives - all those daily activities that stop too much free thinking.  Most other years at this time, I wouldn't lift my head again until around November.

Only this time, this season, as the summer wanes and autumn waits in the wings, I find myself consolidating my recent thinking and rethinking, and instead of packing it away in a drawer, seem to have stumbled into other methods.  All very introspective, and instinctive, but so far really very satisfying.

In practice, I have tidied the kids clothes and bought the new shoes and filled and donated the charity bags.  I have cooked us through the freezer goods and stock taken the cupboards and at some point now that birthday season is here, the books and toys will get a good old shake down too.

But alongside, keeping company with my summer of assessing my life and what I give to the world, I seem to have set up a whole new therapy system, and am jumping in and out of it almost without really being conscious of doing so.

For example the other week.  We finally realised it was time to become a two car family, in order to run the chaotic weekend of football and classes and the gradual separating of our boys' activities.  My response to this was quite bizarre, driven by a latent fear of stretching ourselves financially.

Having spoken out loud my concerns, I proceeded to, slightly manically, clear out my entire wardrobe.  I removed all the unworn, unloved/unloveable items, clearing the mess at the bottom, rehanging, organising so I can see what I have which would allow me to dress how I feel.  Next the shoe shelf, same there, trying to fight this reluctant shopper who doesn't throw anything away until it falls apart.

To my surprise, this clearing process helped me to calm down and relax about the car almost the minute I had finished it, even though consciously I didn't think about any specifics while I cleared.

So yesterday, after a busy working week of disturbed sleep and a little perambulatory night-time action, I took advantage of all my boys having a bonus trip to the Emirates, and tackled my bathroom cabinet, jewellery and cosmetics.  Again, being a landfill phobic and hater of waste, in addition to my everlasting search for the creams that will deal with the stressy dry bits that pop up, there were bottles and tubes and pots everywhere.

I felt lighter once I had finished as if I had cleared out my head as well as my cupboard.
As I draped my 'Dream' bracelet designed and bought by my wonderful friend and creative partner Karen, from the bedside light, everything felt in place.

As I type this, thinking back on a blissful few hours of sorting, remembering, looking forward and consolidating what I need or still want, I now have order in my bathroom, in my drawers and wardrobe, and knowledge of the jewellery that I have been given, bought and kept over my 42 years.

So if I want to wear my dad's ring, because I feel like having him close, I know where it is.  If I want to think of my sister and choose one of the many crystals she has bought me over the years, I can find them easily.

I can dress and accessorise and moisturise according to my instinct and mood when I wake.  And while this feels materialistic and a little bit mad, it is, as it turns out...

EXACTLY WHAT I NEED TO DO RIGHT NOW!

With the evolving of my physiology and the realisation of time ticking, I am opening up the bag that contains a tangle of Sara's, tidied carefully away over the years, and poking my head in just to see if any of them want to come up for air.

The kids book writer, the blogger, the advocate, the teacher, the storyteller...it seems they all might need the chance to check what, if anything, we might want to do differently, in this next phase of my life.

I am excited at the thought of gradually working my way through the house, trying to make sense of the material things I have and what lies behind them in memories and also potential.

So if your head feels a little messy as we head back into term time, I highly recommend taking to your drawers and finding some hidden sanity.  Enjoying the process of removing, assessing, rethinking, accepting, and putting back only what you need from this point on.

I can't wait for my next free hour.
Can you?



Sunday, 22 June 2014

What's in a name

I appeared on the website of an amazing children's charity the other week, an organisation I am delighted to have met while working on the floor beneath them for the last year in Soho.

As you will notice when you click onto the link at the bottom, I appear in my full and fake double barrelled glory, a mark of it being a true mix of Sara at work and Sara the mum.  This joining of my maiden and married names only really occurs on my email and in happy memories of conversations with my friends at University, laughing at what would happen should I, Sara Johnson, end up marrying my then new boyfriend Daniel Jackson.

15 years on from our wedding, and really, honestly, I have thought many times about changing my name for good.  I resisted at the start as I was still establishing myself in my career and we married only a few years into that career path.  Also I felt a great deal of pride in giving my family the nachas of their little girl appearing in interviews or in credits on screen.

In changing my passport, bank account and everything outside of work to my married name, it allowed us both to be lighthearted whenever Dan said "who is Sara Johnson?" as the credits rolled.  So the delineation of the names was very clear for at least a decade:

TV Exec, BAFTA membership card and most of the interviews or press = Johnson.
School, medical, mum and latterly blogger, children's story writer and home = Jackson.

As I get older and my role as media representative for Ch 18 Europe grows, I am bringing the two sides of me together in my life, mind and ambitions and there is a blurring of the borders.  As this occurs I can't help but feel increasingly schizophrenic, insisting as I am on this nominal separation.  Even the shows I am working on in TV land bring the mum into the room far more than I have ever allowed to happen before.

There is a whiff of a shift in intent and purpose around me right now and this post says a lot because all I intended was to highlight the link to the interview without much fanfare.

I suppose what it shows is that I am admitting to have noticed the mix of all the me's in my peripheral vision.  All the Sara's, the TV exec and the charity advocate and the mum and the woman are slowly merging and it's not as scary as I once thought it might be.

How that might grow or what comes next who knows, but until then, please click on this link and have a look at the gorgeous charity that does so much wonderful work above Sara Johnson's head every day.

Daytrippers Five Minutes with...me

Wednesday, 4 June 2014

My Seven Year Itch

I like coming back here on June 4th each year, writing, thinking, another year on from the day our special boy was diagnosed as having magic DNA.

As I've said before, I will never be able to forget the run up to diagnosis and that awful lonely day 7 years ago, when they told me the words that would prove to be so momentous to our lives.
18p deletion.

It is particularly poignant that this week is the first ever Rare Chromosome Disorder Awareness Week, highlighted by the amazing charity Unique. The people who reached out then and still quietly sit, ready for when I go back and ask, is there anyone else on the records like him yet?

As fortunate as I now feel, I know that I will never act like a normal parent. I will also never underestimate how lucky we all are to still be a family, still be a happy healthy foursome and still be living a relatively normal life.

And I know something very strongly - that if it all gets harder from here and normality slips away again, how grateful I am for having been taken off red alert for a while, allowing me to rebuild, heal and refill my stock of energy, tenaciousness and charm.

Above all tonight I feel lucky to have our amazing 7 year old, who plays for the local cricket team, and gets past the first hurdle in the local football team trials, who regales me with facts about aluminium and orang-utans and pokemon and football, who hoots with laughter and charms us all with his smiles and happy approach to life.  Who works harder to do all the things that he does that make him look so typical, and yet never really understands what a hero he is.

From that terribly sick baby to someone still extremely complicated on paper, what sings and shouts out loud right now is him, our successful, happy, healthy and glorious boy.

There will always be the hard stuff behind the sparkles and smiles. 7 years on and into a new phase of development, things ARE changing, slowly, imperceptibly maybe, and I can feel the sands shifting.

The new quiet in the playground each morning, a result of a school trip that perhaps was too much for him and which has left him struggling to hold his own with his confident loud friends.

Or our trip to hospital last week and the paediatrician who told me twice how kind I was to be so patient in repeating our story, and filling him in on who we see for what and why.  How is it that I hadn't even noticed that three years on from finally getting a paediatrician to help, I have not seen the same person twice.

Which means that there is still nobody but me who can draw a line through all the different things that need attention.  This one crappy glitch in the system is something that, if I think about it too long, brings the tears and tiredness to the forefront because it is all still up to me....

To say yes to every medical study, no matter how upsetting the things that get thrown up have been.
To ask for changes and help in our daily treatment, but to have to wait for 6 months to follow up on any action points and not know who will be listening.
To see his phobia of needles suddenly require a play therapist to help.
To hear words like social motivation and issues and flags used in the same sentence and not know who to talk to about it.
To search for innovative ways to replicate physiotherapy for the low muscle tone issues that aren't really going away.
To see that the anxiety is loud enough for even his strong daddy to resort to the mantras and chants that I have been whispering into his ears for as long as I can remember.

I am brave and I can do it

We are brave and we are doing it

7 years on and we're still doing it.

Grateful, tired, happy and hopeful are we.