Category Archives: parenting

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.

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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.

 

 

 

 

 

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.

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…

 

 

 

 

 

 

 

 

 

 

 

 

Poster Child

Olive has made it into the promo materials for the RLSB’s expanding regional services around the Southeast.  She was snapped at the drop in nursery the other day.  I love this pic!

Olive NurseyI can’t help but think that she’s singing “I’ll be there” (the Four Tops, not the Jackson Five’s version).  Dum dadda dum dadda dum dum ha…I’ll be there!!!

I am running the London Marathon 2014 on behalf of the RLSB, a charity that does amazing work in building the confidence of children with visual impairments.  You can sponsor me here.

Squeaky Bum Time

There are NINE weeks to go to the London Marathon 2014.  The bum is squeaking.  The knee is grinding.  Surprisingly, I am also suffering from heated seat-based chaffing of what I will call ‘the leg-bum delta’…more on that later.

14 miles were run yesterday.  Here’s the bonkers bit: wow, that’s a long way, yet, ooh, there are 12.2 miles to go???

20140209_180933My pride and joy are the pair of trainers I have knackered during the winter training sessions.

So many boxes ticked!  Virtue – I have been running a lot (tick).  Sympathy – oh you poor thing, soldiering on with holes in them slippers (tick). Validation – I am tougher than a pair of shoes (tick), Retail – I can go shopping for some new sports gear!!! (tick).

A man comes of age when he starts taking an interest in utility sportswear ahead over other apparel.  Walking boots, trainers, weather appropriate garb.  To hell with the price, this is about survival.

North Face exists on this basis.  I need a $400 jacket.  I may get stuck in a snowdrift. The fact I get to look like I work on a film set is a fringe benefit.   Survival is paramount.  Pass me the clapperboard.

But running the marathon is the real deal.  It’s the snowdrift. And my right of passage will come in the shape of brand spanking new pair of trainers.  I will, of course, pay them no heed.  They are just a tool of the trade, now.  An overhead.  All in a days work.  Show me the puddle.

The chaffing?

Well, after my run yesterday in Dorset – where me mam and dad lives – I went through the standard protocol – hydration, stretching, small amount of crying, then this sort of cock sure limp-walk around the house to stamp my authority on the morning.  All done.

Imagine then my surprise when, after the 2.5 hour drive home later that day, I experience chaffing…of the lower butt??  I walked from the car as if supported by imaginary calipers, a bow-legged cowhand in  a hurry.    The heated leather seats of the Seat Alhambra had roasted my open-pored upper hamstrings.  I can only think that a combination of exercise, shower, jean-pants-heat-fatigue had assaulted my unsuspecting ‘arris.

For those of you who have ever chaffed, you’ll know how unsettling it is.  However, most times, it comes from a build-up of movement.  You can see it coming.  Imagine then a chaffing surprise?  A ninja rash assassin when you thought you were home and dry.  What surprises lay head on the road to 26.2 miles I know not.  Even at rest, you are vulnerable.

But enough of me…

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Olive has also gone up a gear this week, too.  She has walked with a stroller.  Whoop!  She does it a bit like I do running, with a sense of begrudging necessity.  But does it she does! Go Luffalo!

It’s one of those teary parent moments that you never forget.  And with Olive, it always comes with the consideration of how much her eyesight affects her ability to do things.   There’s this peculiar balance you strike as a parent with a visually impaired kid, or I expect, as a parent of any child with special needs.  You want them to be ‘normal’ and you want them to be ‘special’.  You want to tell the world they walked today and then forget about it.   Jump for joy then back to business.

What you can never underestimate is the how hard Olive tries.  She ran the gauntlet of critical neonatal illness.  From day one she has had to dig really deep.  She invests huge amounts of energy in getting on with things.  We notice with Olive that when she is poorly, with a cold for example, her eyesight is not as good.  It’s because she’s low on resources.  And what comes spontaneously to most people she has to work for.  She has to apply herself.

However, to sanctify her efforts also serves to undermine them.   That’s the weird bit.  You know that for every milestone reached, another waits round the corner and that Olive’s motivation is not based on a need for recognition.  She just wants to get on, to survive.  North Face doesn’t even get a look in.

Here’s to a thousand more magically modest milestones.  There’s plenty more footwear to tear up yet.

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As always, you can sponsor my efforts to raise money for the RLSB here.

The little big things

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.  Her head would move towards, or in the direction of, noises, but you could creep past her undetected with ease.  Now, she’ll spot an object, pick it up if she can and put it…well…somewhere?  She also gets around really well and has enough vision to be curious about the stuff in a room, or the people, animals and all that.

Faces?  Well, that’s a work in progress.  Faces are tricky things to figure out if you don’t see them quite properly.  In fact, faces are a whole ballgame in themselves when it comes to VI.

A consultant at Great Ormand Street Hospital that we see regularly said something once that has stayed with me ever since.  In one of the many tests that Olive has undertaken when in hospital she observed that Olive “responded to my silent face”.  The words just hung in mid air for a while and really made me think.  I’d never heard that phrase before.  I expect it’s an occupational term, but it sounded so weird.  It meant, of course, that Olive was responding to what she saw, not a noise (a voice) attached to it.

A silent face?  Who ever thinks of a face as being silent, or loud, or audible in any sense?  I had fast-tracked a layman’s understanding of the terms that surround VI, such as MRI scans, white matter, the visual cortex, neural pathways, corpus callosum et al. Their scientifically sinister undertones accompanied us on the road to finding out what was up with Olive’s vision.  But it was the ‘silent face’ that ‘done me in, guv’.

A world without sound is a different world for kids that don’t see very well.  Removing the sound changes the rules.  And faces…they are so…important.  Bringing the notion of a silent face into our family brought with it a sobering recognition that Olive’s world was…different.

Olive can see a silent face now.  Maybe not clearly, but enough to smile and reach out a hand to say hello.  Enough to recognise features and tell mum from dad etc. And so her path to seeing stuff continues.

There are lots of children with VI that face the same challenges as Olive.  There are also those who don’t have the potential for their vision to improve at all.  Moreover, many have conditions where their site is degenerating.   They all share a common ground of having to adapt to a visually impaired world as they grow, seek independence and find the gumption to get over the hurdles.   That’s why I am running the London Marathon 2014 on behalf of the RLSB to help visually impaired and blind children live life without limits. 

You can help me, and them, via the sponsorship link above and know that you are making a real difference to some seriously special people!