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Olive in the Sky with Diamonds

“Picture yourself in a boat on a river.”  It’s a famous start to a famous song that is fast becoming an anthem for my daughter’s complex little world.

lucy_in_the_sky_with_diamonds_by_spiritoftheshadow

The first of three revelations surrounding the song was the clarity with which Olive said the title. “Dad? Dad! Can we have Lucy in the sky with diamonds on?”

One wee ‘Olivism’ is that her speech was delayed as a toddler.  It’s quite common with children that have a visual impairment from birth.  Makes sense.  A fuzzy world of blocks and blobs is harder to talk about.  And all that visual information in faces that helps us piece together language, it’s just not there. But as she figures it all out, the talking comes.  At the grand age of 4yrs now she mostly won’t shut up!

That said, to pull out a whole sentence of her own with words from a song title, one that’s not exactly ‘The wheels on the bus’, was pretty impressive.  Olive does that.  She impresses you.  It comes with the subtlety of bird song and the power of a flame thrower…boooof!

Y’see, Olive has a great secret.  She knows what her world looks like and no one else does.  We share a house and a life, but our worlds are perceptively different.  She has to conform to our world because ours is the one that everyone sees.  Majority rule and all that. Her world is different, seen differently and lived in accordingly.

It makes a magical mystery of our relationship.

Revelation number two was how she listens to Lucy in the Sky with Diamonds.  When she listens, she’s looking, too.  Not any place in particular, but you can feel her brain building that ensemble of music and image and bonkersness.  It changes her demeanour.

I think she knows that the song doesn’t make any sense, but that in the senselessness sits the world as it appears to her.  A world where all the labels don’t always match up, so switching a few around makes no odds. A world where the dimension of sound is more than accompaniment.  It’s the walls and floor and ceiling of things.

I may be boiling this up into something that it’s not, but I have spent years watching Olive.  Specifically watching her see and not see things. Watching all that she does around those experiences.  And when she listens to that song, she does a heap more than listening.

In doing that, she helps me ‘get’ her a little bit more.  The ‘wheels on the bus going round and round’ and the ‘marsh mellow trees and marmalade skies.’ What’s the difference?

I know that John Lennon says the song title came from a little girl who drew him a picture. When he asked what it was she said, ‘It’s Lucy in the sky with diamonds’.  That may have been a retrospective rebuff to everyone saying the song was an homage to acid [LSD = Lucy, Sky, Diamonds].  I mean, there’s no doubt The Beatles were pretty wired when in Sgt Pepper land, but the story fits for me.  It’s more than just a ‘trippy’ tune.

And if there was a little girl who drew a picture and called it so, there’s another little girl who continues to draw upon it. Lennon was just the tour guide, the chaperone between imagination and childish reality.

The third revelation is a reminder: by stepping outside of normal things, wondrous discoveries are inevitable.  I can read a mountain of words about the intricacies of Cerebral Visual Impairment [CVI] and worry myself dumb about all it entails for my daughter.  Equally, I can put on a song describing a world that nearly exists and watch her soak it up. Somewhere between those two extremes, amongst the jangles and beats, I understand more of what’s going on.

And without understanding, where would any of us be?

As you may know, the RLSB is a UK charity that helps children overcome the challenges of visual impairment.  You can read all about their great work and make a donation to help change children’s lives here.

To drop yourself into a world that looks a little different, here’s the lyrics to a wonderful song:

Picture yourself in a boat on a river
With tangerine trees and marmalade skies
Somebody calls you, you answer quite slowly
A girl with kaleidoscope eyes

Cellophane flowers of yellow and green
Towering over your head
Look for the girl with the sun in her eyes
And she’s gone

Lucy in the sky with diamonds
Lucy in the sky with diamonds
Lucy in the sky with diamonds

Follow her down to a bridge by a fountain
Where rocking horse people eat marshmallow pies
Everyone smiles as you drift past the flowers
That grow so incredibly high

Newspaper taxis appear on the shore
Waiting to take you away
Climb in the back with your head in the clouds
And you’re gone

Lucy in the sky with diamonds
Lucy in the sky with diamonds
Lucy in the sky with diamonds

Because it’s worth it…

There is something about a man dressed as Super Mario, replete with cart, hobbling over a finish line seven hours after he started a marathon that warms our hearts.  Winners are inspirational, but those that don’t win?  By definition, that’s a lot of people.  That’s a lot of empathy.  We’ve all got the underdog gene.

marathon finish

I wrote a post last year about Marathon race day.  This year was much the same.  I trained less, weighed more and hurt more, but all the good stuff was still that good.

We managed to raise over 40% more money for the RLSB this year.  That’s the only victory to worry about, really. Although I have to admit that by Mile 13, after hitting steady 10 minute miles to that point, I thought a Personal Best might be, surprisingly, on the cards.  Alas, no!  The wall I hit and scaled last year simply collapsed on me this time around.  It was hell on a stick…physically and emotionally,  I was done for.

I have never, sober, experienced such a gap between the instructions my mind issued and my body’s subsequent response.

I felt my skeleton…I mean I actually felt it, like all the muscles had been removed, leaving me with a skin and energy gel metabolism.   I was the human equivalent of a discarded chicken thigh.

Anyway….

It is considerably more important to focus on the motivation for running and the Royal London Society for Blind People.  As so many friends, colleagues and connections donated to the cause, I wanted to share why the charity is so important.

The RLSB nursery sums up a lot of what the charity is about.  There are a few things that stand out to me about this valuable service:

1. The staff.

They are very talented, patient, professional people.  The skills they have take teaching to another level.  Not only do they have the specific skills to help visually impaired toddlers figure out the world around them, they also have the interpersonal skills to help the whole family. Maggie Bindon, who runs the nursery, has been working there for over 27 years.  That kind of experience and dedication is priceless.

2. The children.

There are kids at the nursery from all walks of life and with all kinds of stories. Children who’s own parents are visually impaired, children with other conditions as well as VI to contend with, children that have had to fight for their lives.  They are all seamlessly cared for and supported by the nursery and the RLSB.

3. The parents.

The parents all find a way of getting their kids to a small farm building in the Kent countryside to attend the nursery – trains, buses, taxis, cars…the lot. They are a devoted, dedicated and grounded bunch who have overcome adversity in all shapes and sizes to provide stability and encouragement for their children and each other.

4.  The only show in town.

Logistics play a part in RLSB nursery life simply because it’s one of a kind.  There aren’t a raft of places to choose from when trying to get your toddler specialist care in a nursery environment.  For people in the Southern Home Counties, it’s the only show in town.  And its rarity makes it all the more precious.  A real gem.

This gem is what, in part, your donations have helped to support.  The RLSB is not a big charity and your money makes a difference.

Sam, my wife, toasted my completion of the Marathon yesterday (thanks, Sid!) and in doing so recounted a story of a couple that visited the nursery last week.  They have a baby who is visually impaired.  She made a comment about the look on their faces.  A ‘lost at sea’ look that every parent within the RLSB community will know.  What she knew was that the washed out, washed-upness would pass in time.  She knew that because those parents were in the right place to find the right help.  A safe harbor in very stormy weather.

When you knock on the RLSB door for the first time, you feel like the doggiest underdog in town.  But they have a 175 year track record of overcoming that underdog feeling and all that can transpire from it if left unsupported.

To provide that help, your donations are essential and the fact that so many of you dug deep to support the Marathon event is a great, great thing.

On behalf of everyone at the RLSB I would like to thank everyone that has contributed to my 3.5K total this year.

It has been fun taking you on this 2015 trip!

A little insight into RLSB nursery life for you below:

http://www.rlsb.org.uk/our-services/early-years

Billy

Daisy Cutters

I remember being gutted that Olive couldn’t see the daisies in the park. The small patches of flowers that pop up amongst the grass this time of year were beyond her. There wasn’t enough information between her eyes and her seeing-of-things to show her a difference. She was short on data.

Daisy image

All parents know this feeling. It’s the one that comes when you realise your child has limitations. The bundle of unfettered potential that you love on a cosmic scale? Turns out they can’t do some stuff as well as other kids. That moment of realisation can be a humbling experience.

This time it wasn’t the tests at Great Ormand Street Hospital, where the team there put smaller items in front of Olive to see what she reaches out for:

  • Building block [yes]
  • Oxo cube [yes]
  • Smartie [yes]
  • Sweetex [no, not this time]

[How they did this test before the advent of fast moving consumer goods, I just don’t know]

…and it wasn’t her falling down a step because there was no contrast between the edge of it and the floor below. Block paving booby traps. Grrrrrr!

No, this time it was a daisy. It was the ‘give me an answer do’ symbol of childhood innocence and nascent promise. Bugger!

The next step in the daisy episode was to go all squinty-eyed in the park until the point that the daisies I could see became obscured. You look like a sort of well-meaning school mistress trying to force reading glasses up the bridge of her nose. It’s not a strong look. It’s also pretty useless as a facsimile to visual impairment. But you do it all the same.

World – 1, Olive – 0.

But, how things change in a year.

In the park last weekend, Olive bent down, picked up a daisy and offered it to me. I didn’t ask her to. She just did it. I was taken back to last year’s daisy defeat. Bloody hell! She’s cracked it! I went overboard in my praises, like parents do. But this was a breakthrough moment.

Olive went on picking daisies and giving them to me for…well…quite some time. Dare I say that, by the time we’d cleared the immediate vicinity of daisy heads, I was kind of all done on the daisy front!

But what a cool thing to have happened.   It was like she’d been saving that one up for a while. “I’ll wait ‘til we’re on our own again, no Mum, no Betty, no dogs…then I’ll hit him with a daisy forage.”

There are still a bamboozling number of questions that come with these little victories. Is Olive seeing more, or is she just making more sense of what she sees? Is she building her own version of the world? Are those neural pathways re-working themselves across her brain? Should I even judge her ability to see in terms of defeat and victory – what kind of judgement is that and where does it get you?

Visual Impairment. It’s complicated.

I also think about the wider community of visually impaired children we know from the RLSB. Many of them have conditions that won’t improve. So is it improper to think of Olive’s impairment as one that will ‘improve’ from ‘being worse’? Seems a bit unfair in a way.  I like to think Olive’s trying to build bridges to a sighted world. And, like all strong bridges, it needs good foundations in both camps.

A lot of people running the Marathon on Sunday will be bridge building.

Awareness and education of all the conditions that put people, children especially, in the margins of our society, form a critical part of the support process. It’s not all about the dosh.

After all, society is really only a matrix of margins anyway. It’s just that some have thicker lines than others. I am running the London Marathon to raise money for the RLSB. I am also trying, with each hairy-legged step, to rub out one of those marginal lines.

And let us not forget the resolve of the people we help and the generous ways in which they repay our efforts. That can be seen through all of the achievements of the millions of people who benefit from the work of UK charities helping people overcome their challenges…

…or by a kid putting a daisy in the palm of your hand.

The little big things

A lot changes in a year! Still lots of changes to come…

dadathon

imagesOlive  managed to put all the rings back on a building pyramid today.  It was a real milestone.  We don’t know exactly how or what Olive sees in detail, but having her make a connection like this and see ‘enough’ to do it is a big deal.

When your kid has a visual impairment, specifically a cerebral visual impairment (CVI), the developmental path is a jaggedy one.  There are lots of things about seeing that, as a baby and toddler, represent more than seeing itself.  Making connections between objects and words, or objects and functions are all part of figuring out what the world is about.  When those objects are less clear, or completely obscured, those connections aren’t made as easily.

Olive does fantastic things.  To think that 9 months ago she couldn’t see much at all.  She spent the majority of her sitting up time facing the floor. …

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I Am Not A Racehorse…

I am not a thoroughbred.  I am not a racehorse (ahem).  I am not a runner.  Today, as I look at the form for the Grand National, where animals with more legs, gusto and physical presence than me, do what they were born to do, I am reminded of the gap between running…and me!

race-horse-cartoon-funny-2

People who run have some things going for them…they have an anatomy that is in alignment, they have good BMI, they like running.   I am more of a talker than a walker.  My mum said I could talk about a year before I could walk.  That is developmentally inverted.  Were I a baby gazelle, I would have languished in a pile of amniotic fluid at my mother’s flank, gabbling on about the trauma of being born and how nice it was to be out in the open, wholly uninterested in those first precious steps.  Then I would have been eaten by a lion.

So running a marathon is almost a direct opponent of ‘how I role’.  Still, run it I will.  Maybe that walky run of a part-timer, happy to rub shoulders with people older, shorter, larger and slower than him in the 5++ hour gang.  In amongst the people running with fridges on their backs, or the ones dressed as endangered species.  Yeah…that’s my crew.  That’s were I belong on the great marathon migration.

Better to have a reasoned view of where you are at in life than be confounded by goals that are not only unachievable but also, by their very nature, responsible for assigning you to a status of ‘under achievement’ purely by being goals in the first place.  (Oh, I can hear the management self-help gods weeping at this heresy up high on ‘Mount Commitment’, but let me tell you ‘goals’ and ‘commitment’ are very different things.  Confuse the two at your peril!)

We had a great fund raising effort this week at work.  You can read about it here.  My colleagues dug deep and delivered! I am still a ways off my target of 3K for the run, so really hope that you will read and share this blog site to get people thinking about visual impairment in young people.

And perhaps today, rather than have a little flutter on the horses, you can pop that money onto my fund raising page,  where it will stay safe and ungambled until the good people at the RLSB spend it on helping visually impaired children live life without limits.

Tred-Ex Foot Courier: Charity Event – Help!!

On 16th April, 2015 I will be offering an ‘on the run’ courier service, TRED-EX, exclusively for marketing & PR agencies in London.  All ‘fees’ will go to the RLSB as part of my fund raising efforts for The Virgin London Marathon 2015.

Tred-Ex IIThe Public Relations Consultancy Association is also helping to promote the event and support the very important issue of workplace diversity within the communications industry.

The idea is a fun day [eh??] where I get run ragged across London, beating those hipster cycle types at their own game.  Please help me by participating in the event, or sharing this post with your network via Twitter or Facebook.

You can also sponsor me directly by going to my fund raising page here.  My good friends and colleagues at Octopus Group will be helping me during the day, too.  Thanks Folks!

Rules & Regs

Date: 16.04.2015 {8.30am – 6.00pm}

Drop Zones:  Pick-up & delivery within 5 mile radius of Piccadilly Circus

Size / Weight: If it can fit in a rucksack, we’re on!

Booking Contact Number: 0845 37 07 024

Twitter @obillyobilly #tredexfeet

Donations / Courier Fees to be paid to: http://uk.virginmoneygiving.com/billyhamiltonstent

Bookings taken in advance or on the day up until 5pm.  I can do urgent-ish but not urgent-proper.  Think of me as a fast postage stamp!  Insurance for items up to the value of £500.

There is lots of information on this blog and the RLSB site about my motivation for running around London as a cranky postman and as a fund raiser. Read about the great work of the RLSB and please give generously.

Ready, set, go!!

Thank you

Billy

50 Different Faces

You may not know this. You can see about 50 faces at once.

You can make a good go of discerning between different people in a crowd of about 50. If that crowd is 100 or more, you just see face-blobs. Try it out.

facesCrowd2faces in crowd

People that have Cerebral Visual Impairment [CVI] tend to deal less well with visual clutter. For example, anything more than a table-full of faces will probably result in some sort of detuning.

As a parent of a child with CVI, I am equally fascinated and distressed by these sorts of details. But I am learning to be less fretful as I go along this road with my little one.

A recent consultation with a leading professor in the field of CVI helped our family understand something of what Olive sees. And trust me, “What Olive sees” is a very popular question in our house.

You can’t help but think of any compromise in vision in terms of, well, firstly ‘eyes’ and then secondly, blurriness. It’s the Specsavers view on the world.

Seeing clearly is certainly part of the equation. However, mobility, recognition, depth perception and a bunch of other stuff are all parts of ‘seeing’ that require different areas of the brain to make your world work.

It’s something of a revelation to realise that when you are seeing stuff ‘out there’, you are actually being presented with an image rendered by your brain about what’s in front of you.

It’s your very own 3D virtual reality game, going on inside your noggin.   And it’s happening really, really, really fast. So fast that you think the seeing and the ‘what you see’ are the same.

Kids with CVI have a different visual experience because the route between the eye and the areas of brain that do all the picture making and movement are compromised in some way.

They don’t see normally.

But then, what is normal?

I know some very normal people who do some very abnormal things, and vica versa. I also know that two people can listen to a One Direction album and hear two completely different sounds. I, for example, hear the ghoulish laughter of Simon Cowell beneath layers of sequenced, auto-tuned babble. My Californian niece, Bailey, hears an angelic chorus of horny English wonder-monkeys.

How the world appears to Olive is…well, it is what it is, really? It’s her normal. And whilst this lends itself to existential wandering, the practical implications of having a child with CVI are wholly that…practical.

  • Big thick lines are easier to see than thin ones
  • Clutter is likely to be a bit confusing
  • The field of vision ahead is probably clearer than the lower field
  • Faces are pretty complex and take some figuring out
  • Moving things are tougher to see than things that don’t move

That’s what was great about the professor’s advice. It was all grounded in how to deal with the situation, rather than understanding (in detail) the specifics of what’s actually going on. Not that this resulted in dumbing down at all. Far from it.

I’m very conscious not to be too generous with the notion of normality. Creating an inclusive society is a laudable intention…but we ain’t there yet. There’s also a difference between inclusiveness and whitewashing. People and face-blobs. Stand back far enough and we all start to look the same. We all equalise, but on too grand a scale to be meaningful.

To create an accessible world for people with visual impairment, or any impairment for that matter, requires huge efforts, granular attention and the energies and brain power of lots of people. That’s where the great work of people like Joy and her manifesto from the RLSB come in.

I suppose what you want is a society that can see the crowd and recognise all the faces within it, down to the most minute detail. Not via CCTV but through the eyes of everybody else in all those masses of people.

I wrote a blog last year about completing the London Marathon 2014.

My most enduring memory of that event was the level of interdependence on the day – thousands upon thousands of people helping each other out.

It was a useful lesson for the importance of looking out for folks and for those crazy sum-of-the-parts thoughts that occupy a father trying to figure out where his kid sits in the scheme of things.

I ran my marathon. It rhymed with Mo Farah’s but it wasn’t the same. It’s wasn’t even the same as the people who finished a minute or two ahead of me. It was an amazing day, a bucket list of an experience, but to all the people who plodded round or those supporting us, after a while, it was pretty normal, too.

I’ll be doing that again this year. So, please help me support the RLSB by logging onto the donation page or using the link below.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=BillyHamiltonStent

It’s an exceptional thing you do!