Catching a Wave of Thought In This Headlong Race To The End of the Year

I have a couple of drafts of writing saved that I have been trying to post for the last few months. My usual rambling posts about thoughts and feelings, as life hurtles along in a meteor shower of work and home and exams and tiredness and business deals and more.

Every time I find I have more than a few moments of time and the accompanying necessary headspace to sit at my laptop, another week has passed stuffed with events and happenings.  So when I read the drafts and half written sentences that sit in my drafts, the relevance of each has fallen away.

Which is why I am forcing out this catch up post.  Son 1 is doing a practice paper upstairs after a fun few hours playing with a friend. Son 2 is lying on his bed, slowly inhabiting his no longer shared room, listening to big brother's music on headphones.  And D is napping during this lazy sort of active day, with the dog on his legs keeping him immobile as he sleeps.

I reckon I can be here for at least 20 minutes without any sport blaring out from a phone, TV or radio, so here I go...

First

It is 12 years since we lost my Daddy, and with the world news punctuated by terror and brutality, I noticed that me, my siblings and mum seemed to react in the same slightly different way. We sent each other photographs that we have in our houses and drawers, of happy times, seeing Dad smile and causing us all to do the same.  

Because perhaps we all felt as I do....that while I will always miss having a daddy and grandpa for my boys, and will take the time to mourn quietly during Yartzheit, or December 2nd, or both, I also know that he got to live a full life in the years that he had and was lucky to die peacefully with his family around him and surrounded by love. 

So my candle on the shelf this year looked fuller and brighter and reflected how I felt

Secondly

Back in November I had our annual paediatrics appt for my boy.  I had been thinking that I didn't really have that many things to update on or ask for help with.  Medically we have had a blinder of a year and all problems have been dealt with quickly and cleanly. School has been interesting with a class change but we have a lot of wonderful help, and I wasn't quite sure how to make the most of the appointment. 

And then.....he got picked to play in a tag rugby tournament, and I made a landmark ruling.  That I would postpone his appointment, and go with him and his peers to the tournament, revelling in the fact that my boy, nine years on from the scary diagnosis, is missing school to spend a day playing tag rugby at one of his favourite places, rather than at the hospital.  

Now if that isn't special and worth celebrating, I'm not sure what is.

Thirdly

I have been experiencing a sort of "gentle battering" of blue moments of late. 

The effect of 'end of year tiredness', some actual life events of complexity (like work wobbles and business deals) and various first world problems (broken curtains and a newly sick-stained carpet, boxes piled from room moves and expensive vet bills and the creative activities of my days off a distant memory while we live in an 11+ household, where hormones fly up or down depending on who you are looking at)

I do know what you might be thinking.  It's all very normal. And it is, of course, because I am in my 40s, I work, I am married and I have kids and a pet and family.

While I realise I can't solve the "problems", or indeed always control my wobbly emotions and sensitivities, I can just keep doing my best knowing it's all quite fine really, and we are lucky and lucky and lucky in numerous and varied ways.

So these last two pictures are a) super cute and b) here to remind me that both spiky and fluffy both have something to offer which is c) exactly just like life

So happy December to you all dear friends and readers.

Enjoy the sharp and the smooth of all that your lives bring you 

xxx

Links links and thanks. Happy 20th Birthday Jeans For Genes!

I've been writing elsewhere, hence being so quiet on here.  

Life is busy and today especially so

That's because it is the 20th anniversary of Jeans For Genes Day and I have been very active on twitter, Facebook and at school assemblies, raising awareness of the charity and promoting our Treehouse At Number Nine story App that raises awareness and funds for them.

So forgive the linking post to some of today's action and I'll be back soon with more originals.

Good Housekeeping Jeans4Genes Day (numbers 11-14 were mine, I loved reading 1-10 though from the other wonderful blogger)

Mumfidential Jeans4Genes Day

oh and this lovely post too Rocknrollerbaby, J4G and The Treehouse at Number Nine

Have a great day, I most certainly have x

A blanket of words

Currently most evenings and for a couple of hours on my days off each week, I find myself with a blank document or notepad in front of me, trying to breathe life into a new story for my Genies and The Treehouse At Number 9.  In addition to this I have been feeling rather blue over the last month, which, when it really takes hold, removes the words and writing and leaves me blank.

These two statements show that I am not entirely achieving what I would like to, and words are not currently my solace as they have so often been.

So instead I have been reading and reading - books, magazines, blogs, articles, scripts, trying to warm up again from the inside out.

I have been reminded of a meeting I had a couple of months ago with a father who via his sweet young baby has joined the Ch18 family.  In the course of our chat I walked myself back to methods and choices I made when our news was new and things were hospital-tastic; about how I talked and expressed our situation.

We discussed how I explained things at the start and communicated with different people - the family, the outer circle, friends, within our marriage, to doctors and nurses and people who cared and did so sat in waiting rooms, clinic chairs and round our kitchen table.

What strikes me is both the power and frustration of language, how it can fail you when you are learning new words and coping with the feelings behind them, but how it strengthens you as you master your new script.  Mainly I've been noticing how we all do it in our own way.

Within the swanky day job, I am now at the happy point of reading series outlines and scripts for a gorgeous series we are making about a family entering the world of "special". The drama will come as much from the family's (in)ability to communicate as it will the diagnosis, and with every sentence I read by the amazing writer, I can't help but compare those characters to us...to me.

Rather than denial and rejection of labels, I have often described myself as having had a tourettes-like urge in those early years to tell anyone looking at my gorgeous baby about his special genes, his rare disorder, the strange chromosomes...."do you know anything about genetics?"

With every conversation I had like this, I know now that I was controlling my own words, learning how to talk about him, how to describe us, how to own this shitty confusing horrible time with my own language and not the well meaning or unclear words of those around us.

I spent my time taking our new label and drawing my own words and pictures on it, slowly obscuring the letters and numbers that other people had put there.

I still have to control my words when around friends, who look at my amazing boy and wonder what about us is atypical.  One such conversation has occurred a couple of times with a neighbourhood friend, dog owner and father of a football mad son who is friends with ours. He has asked what it is that makes me concerned about my boy, because he struggles to see anything at all.  It's a familiar refrain, which of course is better than the head-tilting "poor you with your disabled child" option which is thankfully not the case... but still one that I bristle at.

The last time we talked like this, while looking at our boys play football in the sun that day, I told my friend that he's asked this before and questioned if he was aware of that. I told him I remember very clearly feeling hurt and defensive as I answered him before, because at the time life was very tough and I linked his question to my latest blogpost which was one of the early vulnerable ones.
At the time I think I even said don't read it if you don't understand what I'm moaning about.
Although maybe I just said that in my head...

Nowadays while things are generally calm and clear, I can explain undramatically to well-meaning friends that I parent as I need but that we're not all that meets the eye.  Also that a lot of my boy's success is down to me being able to power on in those early years and not collapse under the medical confusion and lack of information of my very ill baby.

People now don't know what appointments,  challenges or extra curricular stuff goes into mothering,  because I don't choose to show them.  And that is a subtle difference from those early days when I couldn't let anyone see how hard I was finding it.  Yet even then, I found I could always blog and write that pain with ease.

I won't ever forget the early tough stuff, but it doesn't stop me seeing the amazing boy in front of me today.  I parent both my boys with my retractable metal filing cabinet residing in my brain, there to be rifled through and sometimes popping out at a file all by itself for me to notice.

Right now the files open are dentist, optician and, following a very thorough neuromuscular exam, the one that leads into the school building that is getting more input every day.

As I've said before, knowing my boy doesn't stand out as different 99% of the time, but also knows to be proud of any differences he carry, is about as good as I've ever hoped it can be.
I have and will continue blogging, writing, forming, thinking, sharing because that way sanity lies for me, and because of this journey into language, I am able most of the time to give a non-defensive glimpse into the parenting that lies behind our appearance of typicality.

Returning to these new members of our Ch18 family, a family they didn't ask to join, I want them to know how amazingly they are coping, able to see things clearly as parents but also hoping and trying simultaneously to live life day to day.

When I first speak to people new to diagnoses, I realise that my questions hedge around what they know, how they speak about it, what family around them knows, how they explain to outsiders, how they talk to doctors.  Language questions every one, because, of course, words are where I found sanctuary, and somewhere I think I always will. If not on this blog, or in my stories, then in the conversations I have with strangers and friends every hour of every day.

In our family, thanks to my funny clever husband who has come up with most of the funny titles of the stories I have written over the years, we have rhymes to ease the nagging that comes at mealtimes from the subtle issues with low muscle tone, oral weakness and neurological mal-coordination....so every meal, on and on, day by day, you can hear us all repeat...

Sit wholly over the bowly.
Sit straight over the plate.
Sit squarely on the chairly

Words

And then there are the mantras, there to lighten the dark patches...

I can do it.
I am brave and I can do it.
I am kind and clever.
We are very lucky.

Words and language sewn into our daily routines, consciously there to help make things better.

This is a blog post that has been paused for weeks on end, but finally I know why I kept it.  Despite the colour blue tinging my present, and the frustration around a lack of balance and head space for all the things I want to do, words are part of my fabric and always will be.

From the words that go around my head too dangerous to be spoken; the chats with strangers that I pass by each day, the stories these strangers come to tell me; the poems and stories I write; the school sessions that help the children to trust their brains so jam packed with brilliant words and thoughts; the scripts I read and the encouragement I give.

I am steeped in words and instincts and they never fail me, even when they spend more time within me than out.

It's nice to be out tonight.  See you here again soon

Repost for Mother's Day

Late to the party, but this is a blogpost that I proudly did for Jeans 4 Genes on Mother's Day last week.

Read it here

At the time this was posted last Sunday I was being Sara Johnson TV exec, listening to clever TV types talk about the industry with the backdrop of glorious Jerusalem.

Back now, enjoying my weekend and a return to my schizophrenic Johnson/Jackson work/life separation, I felt like reposting the blog.

As regular readers will know, this charity is very close to my heart, supporting us a family but also helping to inspire us to bring our Genies gang to life in our App The Treehouse at Number Nine.

if you still haven't downloaded the app (for FREE, for Ipad only, from the App Store) you can find links here at www.treehouseatnumbernine.org


Happy Spring from Lugs, the whole of the Genies gang, and me xx

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

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.

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.