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.

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

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?

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

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.

(Don't) Ask A Busy Woman

Yes it is self flagellation time again as I start with an apology for all the blog posts I have been doing in my head since last I was here.

The one about taking on the huge task of organising a big fundraising dinner.
The one about doing so with just one other busy working mum of a special boy like me
The one about doing this while trying to balance work and home and the things that make me glow like helping at school and reaching out to other Ch18 families and raising money
The one about being so proud of our event, of everyone who supported in all the many ways they did including spending the evening with us.
The one about raising enough funds to fill the gap for this year's conference and more on top to set us up for next time.
The one about being so enormously proud of Chromosome 18's new ambassador Eve Rushmer (more about her another time for sure!)
The one about going to Paris the day after abovesaid event, breaking my shoe as I ran for the Eurostar, spilling coffee on my dress as I wobbled down the carriages, and still rocking the day because of the amazing Portobello Style dress I was wearing
The one about my darling sister and family coming to stay a few days after and it all feeling so normal to be rattling around my house together, them and us, her kids and mine
The one about going to Manchester for Passover and spending proper gorgeous family time with my extended family of mum, siblings, aunts, uncles, family friends, 1st cousins, 1st cousins once removed (that rule really confuses me fyi) second cousins and all the in between.
The one about needing to take stock and wind down again, making my days off days off, walking, exercising, getting well, shaking off the low lying illnesses I have been ignoring.
The one about being scared of winding down because I have completely forgotten how to relax and not feel guilty about only achieving a few things a day outside of the ordinary

And the one today.  About having walked around slowly having started the day attending my big son's assembly, then paid in some fundraised cheques, walked to the pet store and the health food shop, walked the dog and squeezed in a work call and some emails. That for me is slow and happy and a move towards a calmer life.

Next up, my relief at having secured new childcare and untensed my shoulders a little knowing that all we have to do now is make it work again with all the changes going on in our lives, house, and the little people in it.

Thanks for letting me catch you up.
Whimsy and humour and proper writing to follow now that the backlog has been outed

Happy Friday all
x

Blown Away by Empathy

Last week my eldest son rendered me speechless over a baked potato dinner that I managed to get home early to join the kids for.

Jacob is 9 and romping through the forest of testosterone faster than any of us had expected, but still managing to keep his sweet nature as he grows an inch a week.  Obviously quite often his jaw sets and his muscles harden and the big boy in him comes out to say hello.  When that happens I'm not really allowed to hold his hand too much on the street or give him a big hug outside school and the rules are changing while we find our way along.  So he is still my soft boy in private and I therefore assumed that we had seen the last of him being that gentle in the open while he navigated these new waters.

Back to the conversation at dinner.  We talked about what the boys had done that day and he mentioned a lesson in PHSE that picked up on an Assembly his teacher had done about goals, citing Dame Kelly Holmes and all she had overcome and achieved.

In the lesson the teacher asked about any goals the class had or could think of that were similar and he said "I told them about you Mummy".

When I asked him to tell me what he meant he said, and I paraphrase:

"Well you were having hard time when Louis was diagnosed and so ill as a baby. And Daddy was away working a lot and you had me to look after too.  But you worked really hard to achieve your goals, which were to make sure that you had someone to help look after me all the times that you had to go to hospital. And you wanted to keep us both safe."

I just stared at him, genuinely speechless at what he had felt, intuited and said so publicly in a lesson at school with 14 other boys just itching I'm sure to take the mickey.

I reached out and squeezed his hand and all I could say was "you are an amazing boy"

He said the teacher followed up asking him, sensitively I'm happy to add, to tell a bit about his little brother and asking if any of his friends knew why he had been so poorly.  Louis proudly grinned at the table as Jacob reeled off all of the friends that had put their hands up and knew about him and his special DNA.

Once I gathered myself and found my voice, I told J that it was amazing to be able to think about me and how I must have felt.  To be able to take what I have spoken of about their early years and intuit how it must have felt for me as a parent.

I told him it was amazing as a 9 year old, as a boy and most especially as a 9 year old boy.

I also said I would like to blog about it if he didn't mind, and it has taken me nearly a week in hope that the emotions have subsided a little.

Needless to say I am clearly snivelling as I type, so will press send quickly and end by saying all that there is to say.

I am a very lucky Mummy.