A pocket of joy

Sometimes, your heart soars.  Kids can do that to you.  For all the toil there are moments that top everything.

Yesterday, I saw the day report Olive gets from the mainstream nursery she attends once a week.  It’s short and simple, but it made me smile.

New Doc 5_1

I expect every parent gets the jitters about the potential of their child ‘not fitting in’.  The thought of Olive being left out as she grapples with the mainstream.  It leaves me cold.  Emotional dad stuff, yes.  Baseless concern, probably.  Real all the same, yep!

It’s that balance. You don’t want her to be treated any differently, but to just assume she can bus on as normal in a big blurry world isn’t right either.  And kids take no prisoners.  Have you seen a toddler birthday party in full swing.  It’s a war zone!

Turns out that her new friend is a girl that had been shy and struggled a bit in her first week at nursery.  When her mother came to pick her up and was shown her playing with Olive, she cried.  All parents know those tears: part joy, part relief, part sleep deprivation and a sprinkle of PTSD.

To know that Olive is operating on her own.  To know that she’s looking out for people.  To get a steer that she’s alright and taking care of things in her own way.  It’s a pocket of joy to keep in your pocket.

Having a child with special needs is like walking on a wobbly bridge.  It requires extra concentration, demands greater effort and carriers more risk.  The weight of weightless responsibility weighs heavy!

And that report had a bunch of things in it that Olive is struggling with, that she needs more help on…drawing shapes, copying objects, milestones and the like.  But in her world, those things are inevitable.  Reaching out to someone.  Talking to them.  Making a friend.  That’s the good stuff.  A fully-loaded human being doing human things!  Knocking down the hurdles one by one.

I think this is really a note to all those parents on the wobbly bridge out there. The ones with kids that run just outside the pack, the kids that ask more without asking, that effortlessly take your thoughts to strange and unfamiliar places.  Take heart.  You’re only ever a day away from great things, soaring moments and all.

Olive’s ability to adjust to a mainstream nursery is in no small part down to the work of the RLSB nursery, which she still attends on a regular basis.  They invest huge amounts of energy in preparing children for their next step.  Years of experience and professional, considered programmes of development sit within the fun, play and assurance that make up the days at Dorton Nursery.

I am not running the London marathon this year.  My knees.  I asked them.  They said no.  But the RLSBs work is no less important to our family and the thinking caps are on as to how we can continue to raise money…just at a lower impact…with less sweat.

Do check out the website and see what the RLSB is up to.  You may find Olive on the homepage.  You may find her daddy, too.  It’s a pic from the 2015 marathon.  Look at the pain on his face.  That’s why he’s a no show for 2016.  No human should hurt that much three times on the bounce.

 

 

 

 

 

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

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.

A dad and a marathon

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