Category: outdoor adventure

Here Comes That Sinking Feeling.

In which I make a clunky link between learning a new sport and parenting a child with additional needs.

I’ve never done drugs. I’ve never smoked a cigarette.

I am, Dear Reader, an Osmond without the teeth and the Mormonism.

I have therefore to choose my highs naturally, and the latest, most modish high is open water swimming.

This is an extremely predictable middle aged women’s pursuit apparently, along with triathlons and getting tattoos to remind you that you are in fact yourself-and not the mother of three complicated individuals who are apparently unable to load a dishwasher, despite being eminently capable of unloading the fridge..

in this spirit you join me about to pack my bag to swim, in a lake under instruction.

I am a rubbish swimmer.

I hate taking children swimming.

I can’t do the sedate and sustainable breast stroke.

Instead I was taught a showy splashy front crawl, which is exhausting and doesn’t coordinate well with my breathing.

Fortunate enough to live bordering the Peak District I have hills surrounding me that are fabulous for running in and bird spotting.

Nearby is a particularly beautiful stream, ending in three waterfalls which people love to swim in. I’d never been despite living 20 minutes drive away for the last 25 years, didn’t even know how to find it.

Six weeks ago on a freezing May Day (oh how I love this country!) in the rain, with 3 people I’ve never met, I swam in it!. It was amazing.

A codicil. Getting out I experienced a continuing drop in body temperature, like a pre hypothermia, that effected my cognition, movement and vision.It was bizarre and unpleasant, and is the reason that if you decide to do this for the first time you do it with someone experienced,who explains that it might happen, tells you what to do if it does and watches you like a hawk to make sure you are OK. (Basically my body wanted to lie down and sleep, but I knew I had to keep warm and keep moving and it would pass) People die in open water, and it is much colder than you or your limbic system is expecting.

Anyway I want more, but I need to improve my swimming and I need to be with someone in case my brain plays hypothermic tricks on me again.

I leave in an hour with everything packed in a ruck sack, and am excited and trepidatious.

14 years ago my body did something extraordinary and heaved out a remarkable individual with no pain relief. (Yes I have mentioned it before and no I won’t stop banging on about it because I am actually a Goddess)

I had experience of birthing and parenting twice, and was well aware that it could be difficult, painful and unexpected, but oh the highs….definitely worth it?

Apparently when faced with uncertainty, disability, and unusual development of a child, coupled with complete lack of diagnosis – a parents body can do strange and unusual things.

Denial is one, fierce overprotectiveness another. Anxiety, depression and an inability to do tasks that were previously achievable all present.

A reasonable reaction at this time may be to lie down and sleep, forever.

I’m afraid sleep is for losers, or people that don’t have to wake up repeatedly in the night to change a teenagers pad/resuscitate a toddler/unblock a PEG feed(delete as appropriate )

If you are new to this extreme parenting I just want to come along side you and say, this reaction is normal.It doesn’t make you a bad parent.It doesn’t make you ableist.It is a reflex your system has that can’t be explained, strikes each of us to a different degree and is not entirely unpredictable..

There is a trick to working through this.

Keep moving.

Keep warm.

Keep someone close by to keep an eye on you.

Make sure you have plenty of coffee and something sweet.

Persisting through this difficult time will bring its own rewards, and teach you about yourself your strengths and weaknesses (believe me you will have both)

It might not be easy. It won’t always be fun, but then training isn’t supposed to be. It’s supposed to be training.

Dear fellow parentsI am in no way minimising the grief, confusion and sheer exhaustion an unexpected Pearl in the bagging area can bring.

But know this. It is possible to survive these early feelings of disorientation.

It is possible to thrive in a harsh environment.

It is possible to be utterly giddy with joy at your achievements. Not always, because come on people this is after all real life,not just a tenuous analogy about sport, but often.

Ease yourself in. Check your breathing.Persist with caution, but nevertheless persist.

You my darling have absolutely got this.

With thanks to Suzie at Peak Swims, currently rebuilding my swimming technique ! (News just in I didn’t drown or get hypothermia but I did work hard and had a massive giggle too!)Check out her page here

Short blogs about running.

How I started running and forgot I was no good at sport.

Deirdre O’Connell can you hear me?

I know I was a disappointment to you. Not all speed and golden limbs like the Team Captains. Crying on cross country runs and having no coordination did not make me a top pick in a PE class, although my lack of concern about my appearance made me more enthusiastic about hockey than some of the well coiffed  and manicured Essex girls I grew up with.

In my young day there were two types of girls. Nerdy swots, or gorgeous sportswomen

You can guess which category I fitted when reading this report entry, from the above Miss O’Connell  PE.

“Jane continues to try to give us her best, but PE is not her strongest subject area”

I followed up the crying on runs with throwing up during a time trial in a biology class about physiology. Genius.

Encouraged by parents who felt thinking was more important than running, and an “everyone in our family is rubbish at sport anyway” I stuck to regularly being bad at ballet-and gave up on everything non dance related.

So what changed?

The Gym. A place where you could turn up follow a programme and go home.A  place that children (when I became that stay at home mum) were not allowed.Suddenly fitness became attainable, and what is more I found that it affected my mood positively.

Then I became that other parent-a parent of children with additional needs.

I began to dream of running. (Excuse me I think my subconscious is showing)

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However, how could I, a person who was interested in reading and thinking, the last person picked in every team, an enthusiastic but talentless dancer who had picked up a longstanding ankle injury during a ballet exam(yes truly) possibly run.

I pronate, I am gangly running couldn’t possibly be for (as my mother would put it) ‘The Likes of Me” could it?

I never did my D of E. Did I mention I’m not the sporty type? When the first born started to do her bronze I was desperately trying to pay her back for having been ineffective enough to have produced a sibling who took up all my time.

“Don’t worry about the sport challenge we can do Couch  to  5 k together”I said blithely.

And so, between caring for a small needy person, a middle child with latent Aspergers, and working part time as a Speech Therapist,I laced up my trainers and plodded.

Nobody told me what this meant.Couch to 5K if you haven’t come across it, is an easy accessible way to start running.You walk/run over an 8 week period until you can run for  5k. Despite feeling I couldn’t run for 5 minutes much less 5km we carried on.

I say we. We started in February. 3 weeks in Dof E girl who gets asthma got terrible hayfever and asthma and stopped, And I just couldn’t.

How the above has led to me signing up to run the London Marathon-a Marathon Miss O’Connell-might take a bit more explaining.

But that is a story for another day.

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If you feel inclined, sponsors for my Marathon challenge can be made here .They will both encourage me in my training  and help people ( like my wonderful Mum) living  with Alzheimer’s.

 

 

 

 

A Chair. With Wheels.

This post was originally shared on Firefly Friends.Hop over there to see a variety of excellent blogs about special needs.

 

A holiday, in Cornwall. Pearl decides to do some beach walking.

Unable to use her trusty kaye walker on the sand she relies on Dad’s hand, stubbornness and occasional crawling.

 

The family become silhouettes on the shoreline, and I am marooned with the new, cumbersome, wheelchair buggy, unwittingly about to take part in a social experiment.

 

The buggy is new, green, and slightly reclining, it also holds weights up to 14 stone.

It’s sunny. The small girl shape on the shoreline is digging. I have a book. So, I sit down on the deckchair substitute I’m minding.

 

Soon I start to feel uncomfortable. I’ve positioned myself just off the main path to the beach, so I can see the sandy explorers, and be as close as possible when Pearl’s energy runs out.

People are passing, as they have been since I arrived. Something however has changed and I’m not sure what.

 

As crowds stream past, adults look over my head, some glance at me and look away as soon as I catch their eyes and smile. Those who do say hello often accompany it with a head tilt, and a mild look of sorrow. I am in direct eye line with sandy dogs and small children, who feel free to stare, but generally return my smiles, even the dogs! (Famously

known for being a bad influence on children and dogs, I tend to over excite both!)

 

A couple my age are struggling up a steep embankment and having difficulty managing the climb, and a lively canine.

 

“Can I help you by holding the dog?” I ask.

 

“No, no, don’t worry we’ll be fine “comes a swift reply.

 

I look at their kind, concerned faces. Then it hits me.

 

I believe I’m sitting in a chair, but all the passersby think it’s a wheelchair. The feeling of dislocation has come from the reactions to a chair and a young(ish) disabled woman.

 

Ouch

 

I think of Pearl, and my best friend who has CP and is a wheelchair user. Do they get this? Every day?

 

I get up to help the dog walkers, who are astonished at my miraculous recovery.

 

This also gives me pause. What if I was an occasional wheelchair user (like Pearl) would people have an opinion on that too? Perhaps think I was inventing a disability`?

 

I chat about this to the dog walkers.

 

“I’m sorry”, he (who incidentally was one of the only people to look me in the eye and grin and greet me when I was in the chair) said.

 

“I just assumed”.

 

I talk about my feelings at swapping places with Pearl and say

 

“I think everyone should be made to sit in a wheelchair in a public place for half an hour it’s been an eye opener”.

 

Ms Dog walker agrees. Her best friend at school had been a wheelchair user, and she’d had a go in her chair.

 

“Didn’t like it, everyone treated me differently and nothing was in my reach or eyeline”

 

Do people look at Pearl like that? Does she notice? I hope not, but being nonverbal and having challenges with her understanding of verbal language, I’m sure she does. She is a very astute reader of body language and facial expression.

 

I would urge anyone to try this. I found the power in an exchange shifted very subtly. I was literally being looked down on. Not only that, but the burden of beginning an interaction, lay with me as people over empathized and felt uncomfortable about how to acknowledge me.

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So to all of us who get around on two feet.

 

No cause for alarm.

 

It’s just a chair. With wheels.

To read other posts on accessibility check out #AccessLinky

 

Splash.

In which water is wet and children are too.

It’s summer in the UK, and rather unusually we seem to be having one. The weather is consistently hot,  but more extraordinarily, consistent.

I love this. Love the heat, love not having to leave the house for a day out with four seasons worth of clothing . Pearl  loves being outside, but actually the heat is more of a trial to her. The extreme temperatures (and apologies to any readers in Australia, to us 28 degrees C is extreme) makes her unpredictable muscles floppy, weak, and well, more unpredictable

Times this by 50 and you have a school full of hot, floppy, grumpy, children.

The Horton Lodge solution?

“Please bring in a change of clothes and a water pistol tomorrow we will be having a water fun day”

Leading to another favourite home-school diary entry.

“We have had a great morning outside in the sun for our school waterfight”

This dear reader is another reason I love Horton.

 

This is part of a blog a day for Horton, which, thanks to reader generosity, has already raised £360 pounds for the Parent Friends and Staff Association.To add to the pot, help keep the school minibuses in good shape, and put money towards future Bendrigg trips you can donate here (don’t be put of by the £10 suggested minimum on the page, give as little or as much as you like!)

 

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A blog a day for Horton

 

 

Adventure Time.

In which Pearl flies through the air with the greatest of ease.

Most primary schools have a school trip, in year 5 or 6. It becomes legendary in the school and is a rite of passage.

Surely a school which caters for children with physical challenges would not be able to do this? These children need wheelchairs,  fancy equipment, medication, help washing, changing and dressing, some are fed through tubes .Far safer to keep them at home on familiar territory doing something nice and gentle like painting, or Muti Sensory activities.

If you agree with the previous statement I have failed, in the last few days, to convey the ethos of Horton Lodge Special School. For this I apologize.

I give you…..Bendrigg.

As soon as they enter the school this children know about Bendrigg. The big ones go there,  assemblies show abseiling, climbing,zip wires, caving.

As a newbie parent at the school, I was astonished.Pearl could never do that! Then I saw videos of some of the least physically able children in the school flying through the air on zip wires, squealing loudly and grinning widely.

And so, as it’s Saturday,and I need to take a small girl to her swimming lesson I’ll say no more, but treat you to some pictures of Action Pearl.

Oh just one more thing, if  you donate to the school PFSA ,or have donated, this is one of the things the money will go towards.

The logistics,training and high staff to pupil ration could make Bendrigg prohibitively expensive.The centre itself is charitably funded, but costs to Horton children are kept low by the PFSAs tireless fundraising. If you would like to help some of Pearl’s friends fly through the air next year (and imagine this feeling if you spend most of your time in a wheelchair) please donate any amount,  however small here.

 

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Important practice for being in small spaces before caving.

 

 

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I know tI couldn’t do this,She went in in her wheelchair, but the spirit of adventure is strong in this one.

 

 

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A brave face here,I saw the video, she was a bit scared at the top.

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Messing about in boats.

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Action Pearl.

 

 

 

 

 

This is part of a blog a day for Horton.

 

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A blog a day for Horton