The Learning Curveball

Ever had that moment where your kid becomes the grown-up and you are left sucking your thumb? It’s a revelation.

CurveballParenting is learning on the job. You sort of do what you think is right, borrow the best bits of your mum and dad and busk the rest.

However, with some experience, you at least get into a rhythm.

Having a child with special needs adds another dimension. You get a learning curveball [and that’s putting it very mildly]. Sometimes, distilled into a few seconds, the whole crazy ride is served up for you as a lesson.

This is the story of a priceless, perfect lesson.

Betty is a couple of years older than her sister, Olive. She has, for now, about 200 per cent more life under her belt. It makes her a very important guide, yardstick and occasional punch bag for her sibling.

Olive and Betty both attended a birthday party not too long ago. It was a nice party. Lots of fun and games. At the birthday tea, held in a squash court of the sports centre that hosted the do, a more chatty, less headless chicken atmosphere settled the kids down.

At these events, when the party goers aren’t quite old enough to be left for a couple of hours, parents form a sort of Templar circle around their gathered offspring at feeding time. They interject now and again to shove a food group into the path of an unsuspecting chocolate covered claw, or scrutinise the choking risk of a seedless grape.

At this particular feast, as the kids were tucking in, a girl turned to Olive then to Betty, chuckled and said:

“She’s got funny eyes!”

There was no malice in it. Maybe a hint of mischief, but nothing heavy. It totally threw me.

In fact, it turned the squash court into a silent, spinning cell. I had never heard another child point out Olive’s squint. Captain confidence was all at sea with nowhere to go.

What to say? What to do? The entire predicament of learning to parent, the road to finding out about Olive’s vision, her recovery from a near-fatal illness, the graft of putting all that together into a regular life; all undone by the innocent words of a four year old.

Olive, wholly unaware of the comment or its relevance, chomped away on a sandwich. I needed a line. I needed to overcome the shock, think of something sensible to say then make it come out of my mouth. The learning curveball had been thrown.

Then, from nowhere, Betty looked at the girl and said calmly, “No she doesn’t. Olive’s eyes aren’t funny.”

It was said with all the authority and gravitas of a state leader. There was a three foot tall instruction that gently told the girl it wasn’t a great thing to say, told Olive she was fine and told Dad the situation was under control.

“Yeah! What she said! In that way,” I thought.

I was edified by my eldest. She saved me. She had it covered. It was all in the delivery.

Her words were built on experience, on deciphering all the complexities and nuance of Olive’s situation and how that might appear to others. Intuitively, she calibrated all the moving parts. She caught the curveball as it dropped from hitting her Daddy’s chin…and she crushed it.

I didn’t realise it’s the kids in the driving seat? I thought I was driving? Turns out there are times when I’m just the airbags…or windbag, maybe?

This blog is mostly about Olive and visual impairment. Betty is an integral part of that world. She’s the wingman whose own world is framed by having a sister with CVI. She doesn’t have the baggage of being a grown up, but she has experienced all the bruises of being part of a family that adjusted to some new rules. CVI has shaped how she sees things.

And the lesson in the silent squash court brought it all home. No one in our family has all the answers, but between us they can all be found.

The RLSB provides bundles of support for parents of visually impaired children when their four year olds aren’t around the bail them out. Creating a parent network to share information, experiences and cups of tea is a critically important part of the community and services offered by the charity.

You can help me help them help me by sponsoring my London Marathon 2015 run here.

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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!

Eye Contact

There are times when Olive and I establish eye contact.  It’s a great feeling.  The whole world stops. We fly off somewhere.  Wow.  What a buzz!

A lot of other timesOHS - RLSB, Olive kinda looks elsewhere.  Not ignoring you, but looking about you and around you.  Slightly not at you.  It’s like she’s trying to decode a puzzle.  Day to day, you hardly notice it.  From what friends and family tell me, they don’t seem to pay it much attention either.

But that slight absence must register somewhere because when she does ‘lock on’ to you, it’s transcendent.  Eye contact is a very powerful thing.

We take it for granted.  And when we can’t establish eye contact, it influences how we perceive people.  We need to know that we are known to folks.  It’s an ego thing.  It’s maybe why we ridicule squints.  We feel uncertain when people don’t look at us quite right.

Hang out with a blind person for the first time and check-in with yourself over what’s going on.  You spend a few minutes scrabbling around for clues and cues. Someone is talking to you, but not necessarily looking at you. The rules of a game you’ve been playing without thinking since you were born have changed…and you have to learn, quick!

I want you to consider what if feels like to experience a world of visual impairment.   Consider the impact it has on young people when they are forming bonds and relationships with their family. When they build friendships at school.  When they take their first steps into employment.

Whilst the logistics of life is one of the practical barriers that blind people have to overcome, it’s not the only one.  Navigating people is way more complex than navigating pavements.

Being defined or judged by ‘how we look’ takes on another meaning for visually impaired kids.  It’s tough enough to be measured by appearances, but when the whole notion of appearance is skewed by seeing differently too, you have a two-way mirror to contend with.

Visually impaired children take gigantic steps every day just to keep up with everyone else.  And in doing so, they stride out in front of us.  But they only do that with the support of organisations like the Royal London Society for Blind People [RLSB].

I am running the London Marathon to help raise money for the RLSB, the charity that supports Olive with its wonderful nursery.  They do plenty more besides for all ages of young, partially sighted and blind people.

I am also running to raise awareness of that fuzziness between seeing normally and seeing differently.

In the past year Olive has made huge improvements in how she uses the sight she has.  The RLSB nursery has played a critical role in helping her to achieve this.  Without their services, Olive, and our family would be in a different place – less confident, less optimistic.

The RLSB website is full of great resources and information that will give you a really clear idea of how donations to the charity are put to good use.  It’s not a big organisation.  It’s a regional charity providing very specialised support to a group of very important and deserving children.

Please help me raise some money for them.  Click on the link below and get your giving face on! In doing so, you will make a difference.  That’s got to be worth the investment.

http://uk.virginmoneygiving.com/billyhamiltonstent

What a day! Thank you!

Olive MarathonThat marathon.  It was a cement mixer.  A food blender.  It was a day of everything.  I feel very privileged to have played a ‘moving part’ in such a spectacle.  And what a lesson in all the good things life has to offer.  Overdoing it?  I’ve may have finished, but I’ve not even started yet!

Before the race

It’s all about if you want a wee and getting your head blown off about how many people there are at Greenwich park.  Everyone you see is running for someone else.  Perhaps on behalf of an individual, or in the name of many thousands.  All of a sudden, you go from ‘training for a long run’ to being part of one seriously sensational network.  And then you wonder if you want a wee again.

The start

Everyone starts to walk en mas and in orderly fashion to the start line.  Like any decent cavalry charge, the organisers have figured out what speed a crowd of several thousand needs to be at in order to hit the start line without falling over each other…and that flip from walk to run is a great feeling.  You’re off!

Miles 1-5

It’s a bit like running through a carnival.  Lots of support from the Greenwich crowd and lots of colour, energy and good vibes.  At this point, no one is out of steam and your senses are suitably distracted from the miles ahead.  That first hour is very special.  You get the sense that you’re into something pretty good.

Miles 6-10

The body starts to let you know that you’re running a marathon.  The sun starts to tell you that it’s really hot.  Despite my ongoing knee thing, all worries were focused on nipple burn and blisters in the first half of the run!

Miles 10-15

This is the rock star bit.  Leading up to and going over Tower Bridge, into the sights, is a great buzz.   For a moment, you forget that you have another half marathon ahead.  Maybe I can just run back and across the bridge until the miles are clocked up??  It’s like a football stadium…on a road.

Very Good People

It’s in the hour up to Tower Bridge (13miles) that you also get the Marathon Lesson.  This event is only about distance and time for the Elite.  The vast majority are putting themselves through it for a bunch of incredible causes.

The London Marathon is a real-time reminder of the power, scale and enduring nature of human kindness.  I was in awe.  The runners and the crowd are energised by doing a good thing for other people.

I live in a commercial world.  It’s a world away from the essence of the Marathon.  It struck me how the BIG institutions of the land are wholly reliant on human kindness to prosper.  Government could not function if people were not prepared to work on behalf of others, whatever the conditions.  The BIG brands, Apple, Virgin, Barclays etc…they would have no customers if we as humans were not able to compassionately support each other.  What presents itself as ‘charity’ is really an extension of people doing what people do.  We don’t buy iphones intuitively, we don’t borrow money by default, we don’t fly without thinking about it, but we do help each other.

The London Marathon is 26.2 miles of people helping each other out.

I think that’s what makes it so special.  With that in mind, the last 11 miles were all ahead. And my legs were starting to wobble!

Miles 16-21

Hard Yards.  Water, gels, food, focus, dedications…but somehow you just run out of steam.  The stride shortens, the rhythm syncopates and…you hit the….banking district!  It’s also the points where you see casualties in greater number.  St John’s at work on some people, others attempting roadside cramp removal, others walking in that I’ve-had-enough way.   But always, a moving river of charity vests and a chorus of support from a crowd full of welcomed strangers.

Miles 22-26

Your body and mind get split in two.  The support thickens and the sites of the capital are back!  You do get literally carried along.  But oh that body, those legs, those aches that just won’t let you alone.  It’s all about hanging on.

The last 300 yards

Turning the last bend at Buckingham Palace to face the, thankfully, short stretch to the finish line is a wonderful feeling.  There’s just enough endorphin in the system to let you soak up the vibes and the pain.  The red tarmac of Pall Mall gives a change of tone to the heavy, heavy weather of the past 90 minutes.  You’re home.  Phew!

The Finish

When you stop running after you’ve run for, in my case, 4 hours 46 minutes, you feel….weird?  Exhausted and really quiet.  No thumping feet.

All the pain of moving gets reallocated to the pain of not moving and the interim period is about as close to teleportation as I can imagine.  Not that dreamy Star Trek teleportation.  Think more like, The Fly.

Much like the pain of the run itself, the sense of achievement builds over time.  It’s not til a good few hours later that what you’ve done really sinks in.

The upsides of this experience are numerous.  The money raised from sponsorship, the life lesson, the physical fitness, the love affair with lycra, the family support, the 52 likes on Facebook, the pics, the ‘I was there’ factor.  And yes, I can’t walk properly.  I am the Tin Man.  But…what a day.

The cuddle at the end?  Priceless.

I will continue to thank everyone who has given money to the RLSB as part of my Marathon sponsorship.  But in blog world, I have to say officially, again, Thank You.  You have made a contribution to the futures of young visually impaired people…and one of them happens to be one of the most important people I know!

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As for next year?  Well, being a dad it’s not a sprint, it’s a marathon…

 

 

 

 

 

 

 

 

 

 

 

 

This is it! (Nearly)

jacko IIThe last person to coin the phrase ‘this is it’ was, I believe, Michael Jackson?  However, my intention is not to bribe a doctor to administer me with fatal doses of hospital grade anesthetic.  My intention is only to run the London Marathon…next Sunday.  Gulp!!

I have done most of my training runs (knee permitting) with a woman called Nathalie.  We break up the run by talking…mostly about pain (mental, physical, emotional), pressure points, event logistics, fund raising, self-doubt, hydration, clothing, weather, trains, celebrations yada yada yada.  We’re both running for charities that have impacted our family lives.  So, in terms of big deals, we share a bigness!

Yesterday’s run, however, was a day of referring to all the above and then getting, dare I say, a little bit excited.

The ‘journey’ of training for the marathon makes you ‘dizzy’.   I genuinely thought I could run a sub-4 hour marathon for about…hmmm…two weeks?  It was a temporary belief.  I had found my calling!   A balding forty-something marathon man.  My middle years spent taking on ever more extreme endurance as my face became a gristled grid of windburned wire.

What a numbnut!?

The reality of marathon training is that it is super tough.  There are reasons why I haven’t bought a pair of real trainers for the past 20 years.  There are reasons why I have been getting progressively heavier over the past decade.  There are reasons why I used to bunk-off PE at school.  There are reasons why my knee nearly fell off during training! Innate, genetic, immutable reasons!

My training plan sort of went out the window due to knee issues.  I have ground through the final weeks with a combo of cycling, funny exercises and some running.  My plan for the race is really one of hope that the knee holds up – but as the start line approaches, it’s a good hope, not a prayer.   Thankfully, the remedial work on my bum (glute) has helped some and, luckily, the advice of ‘not running  very fast’ is one I am more than happy with.

The trouble with such a physically demanding event is that you get immersed in the ‘performance’ and lose sight of the motivation for signing up.   My family couldn’t give a fig what time I run the marathon.  Olive doesn’t even know what time is?  The RLSB just want me to get round and (ahem) enjoy it, raising money on the way. None of my fellow runners are concerned for my time.  It’s just me, then?

We live in a world that is judged on performance and that seems to creep into your skin, even in fun running.

Kids that are visually impaired know a lot about performance.  As an infant, the performance is, in Olive’s case anyway, a series of trips to GOSH to be observed and evaluated against a set of benchmarks for VI children.  This is a very benign yet important process.   We get an idea of where she is at and what she can see.  We also get some perspective on where her development is against sited and VI children on an objective scale.  I think it also gives the team at GOSH some sense of red flags to watch for as well.  If her motor skills, speech etc are delayed any more than is to be expected as a result of her blurry world, they may need to look for other cues as to what’s up.

I’m sure there will be times between now and Olive being a grown-up where her ‘performance’ is evaluated in more subjective ways.   It’s hard not to judge people that sit outside the physical, emotional or intellectual norm.   Humans don’t do outliers very well.  There’s probably some sort of Darwinian imperative that ‘forces’ us down this track.   For most of us though, it’s to do with a lack of familiarity and plain old bad habits leading us down often faulty roads of judgement against a person’s character and capabilities.

Olive, thankfully, swims at the shallow end of adversity with her condition.  She has some sight.  It’s improving.  Her development is good.  Her attitude is enchanting! But, she’s still going to run the gauntlet of feeling excluded, vulnerable, ‘out there’ in the big wide world at some point.  Maybe no more than any other kid.  Maybe less?  But as the work of the RLSB keenly points out, the need for VI children to be supported in infancy, through the school years, through adolescence, and be given all the chances possible to realise their potential is crucial.

If children are given the right preparation for life, they thrive.  VI children benefit from some of that preparation being tailored to them – peer groups, skills development, training, confidence building – even the simple mantra of living life without limits – they are all guiding hands to give VI kids a fair start.  With that, the ‘performance’ measures that life places on all of us, stand a better chance of being met.  In some case, exceeded.  On others, completely smashed to pieces!

And that’s why I’m running the London Marathon 2014 for the RLSB.   I signed up because this worthy charity has helped my daughter and family, because I have met so many other children that benefit from its work and because the notion of running a long way motivates people to give me money to do so!  My marathon is not a tick box event for the middle-aged professional.  It’s not a passion to test my limits.  It’s a commitment to my Olive and an investment in all the great people at this remarkable organisation.

You can help me on this big ole run by donating here.

That really is it.

 

(for now)

 

 

Toothless Highs and Lows

dadathon

What’s the difference between a set of false teeth and a weak arse?  One makes you laugh, the other makes you cry.  Let me explain…

teeth

The marathon training has hit a bit of a wall.  Four weeks ago – about nine weeks from the big day – I got a bug and missed a week of training.  The following week I went back to training and, whilst on a long run, had to pull out at ten miles as my grumbling knee problem really went up a gear. It could have been a lack of stretching, the early start, the new trainers, or just miles on the clock, but it was a watershed for sure.

The week after, I got another bug!  This time a vomiting virus that presented itself to me as I was presenting to my whole company at the Octopus Group Kick Off event.  Oh the humiliation…

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So A Blind Man Walks Into A Blog…

Citizen White Cane

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The purpose of this blog is…well, I am still figuring that part out.

Basically, I am a visually impaired man in his mid-twenties trying to navigate my way through this thing called life. I have been visually impaired my entire life, as I was born with a rare genetic disease that affects my retina. My eye condition was misdiagnosed until I was 13, when they discovered the true condition I had. This discovery allowed the doctors to try new ways to improve my vision. They were able to prescribe me glasses, which vastly improved my sight. While I thought my new vision was stellar, I was still considered extremely visually impaired. I do have some sight, but I am not exactly the top recruit for the military’s sniper program. The years before I got my prescription lenses taught me how to function and be independent. So when I got my…

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A dad and a marathon