Project ‘Get out of the house 2017’ #wheelygood

You know those grey February days when you think it should be spring but it just isn’t quite yet? When the deliciousness of summer beach picnics and lounging about in the park has faded just a bit too far round the memory corner and your feet have forgotten what it means to be flip-flop ready?

So, for me, that’s today in a nutshell. Sat under a blanket for the third day running in the inhospitable company of a vile and flu-like thing, I’m going more than a little four-wall-crazy. And when daytime TV becomes intolerable the internet is my friend between naps, nose blows and making irritating requests for water and ‘something spicy and scratchy’ to eat.

So I’m planning some family days out.

This year we promised ourselves we would do better at getting out and about to explore the beautiful part of the country we live in. Nestled in south east Cornwall, we have all of not just Cornwall but also Devon right here on our doorsteps but we have fallen into routines and habits that mean we often visit the same places. Partly because we like them but also because for us they are ‘safe’ options.

We know that the Eden Project has a Changing Places loo with a bench and a hoist so we can change Orange and that the whole place is a wheelchair accessible, sensory paradise where we can always get something delicious, allergy free and mashable for Orange to eat. It’s an easy, enjoyable and inspiring day out for all of us.

And the wine is good. So it’s always a win.

Out late and totally winning at life at the Eden Project

We know that we can get an all-terrain wheelchair onto any of the beaches in St Ives, and that the food options there are top notch but that the disabled parking only lasts three hours and the alternative, the train in and out from Lelant, isn’t wheelchair accessible.

We know we can easily get a wheelchair round the National Maritime Museum in Falmouth then go across the (flat) square and eat lobster at Rick Stein, or visit the National Marine Aquarium in Plymouth and dine like kings at Rockfish afterwards but, while all of these venues have plenty of room to install one, there is no Changing Places loo at, or even near, any of them.

It’s a car boot job or filthy floor of the ‘disabled loo’ (is that mud or poo, water or wee I’m kneeling in today?) to change the boy, risking basic hygiene, spines and dignity as we go.

We know that any beach with a slipway is our friend for a sunny day out with a picnic, and some beautiful wheelchair friendly walks can be found on the moors to either side of us but the same changing challenges abound.

Wet through, attempting a change on the back seat of the car in a public car park

Sometimes, the sheer planning of a day out with Orange means we don’t do it at all. Because family life can be pretty exhausting as it is, and honestly it’s often too much of a bore to try to figure out if a new place we have never been before, a new walk, attraction or picnic spot might be accessible enough for us.

Strangely, access statements don’t seem to contain the information you need if you are going out and about with a disabled child who is 100% reliant on a wheelchair.

We’ve had some pretty dire experiences on days out where the accessibility has not just been an afterthought but where there has been no thought at all.

It was on a ‘challenging’ family day out to Cotehele, a local National Trust property, just before Christmas when I figured that since over half a million tourists visit the south west every summer and 2% of those are likely to be wheelchair users, that’s over 10,000 people a year who  are being poorly catered for.

10,000 people a year. Most of whom are probably here on holiday with their families, because wheelchair users don’t travel alone any more frequently than ambulant folk do.

So that’s actually 30,000-40,000 people a year visiting Devon or Cornwall who need better disability provision, and clear information about that provision, so they can enjoy a family day out.

Even with the distinct advantage of living in the region and knowing where to look, planning a family day out and being confident we will have everything Orange needs is a military exercise.

Just last week, I was planning a walk on Dartmoor and had to visit six or seven different websites just to find an accessible walk, nearby accessible parking, whether there was a Changing Places loo (there wasn’t), and whether there was an accessible child-friendly pub/restaurant/cafe anywhere within wheelchair striking distance that would serve something Orange could eat and that we would all enjoy. That wasn’t booked three weeks in advance.

I’m ashamed to say, I gave up. We stayed at home.

We can’t keep doing that, though. Because venues and owners of public facilities simply won’t be persuaded to install accessible facilities if they don’t see the need. And they won’t see the need if we all stay at home.

I know the National Trust staff had never even thought about the negative impact of keeping their accessible entrance and exit at Cotehele under padlock and key (that you had to go into an inaccessible building and join a queue to request to be unlocked) before we pointed out to them how exclusionary that was.

Guess where reception is? Up some steps, ta da!

I filmed it and everything, because I had total National Trust hives by then and really needed to leave… 

Trying to leave Cotehele in a wheelchair

But fresh in anger we made a promise to ourselves. That we would go out and about with Orange in his wheelchair in a much more intrepid way than we have. Because we need to get out and about for our health and wellbeing. It’s a fundamental need, as well as a nice thing to do.

I also made a promise that I would use this blog to start to build a useful resource for people who might be planning a holiday or a visit to Devon or Cornwall and who are finding it hard, like we do, to find places to go on wheels. With information that’s more user friendly than a tick box access statement. A little mini guide to getting out and about as a family with a wheelchair user in the south west.

It will start small but, since we’re never, ever moving house again (not just because we love it here but also because disabled adaptations will see to it that we can’t, but that’s another tale), I figured that over the years it might build into something really handy for people.

Having sunk to a new flu-based low of watching Parliament Live for two days now, this morning I stumbled across the #disabilityinquiry in which Changing Places loos were a hot topic.

It reminded me of our promise to get out and about with Orange, to go to new places and to start to build a place online where families can find genuinely useful accessibility info about our beautiful part of the country.

So I suppose this is the distinctly low key launch of what I am going to call #wheelygood. Or not. Watch this space for our first trip out, once this flu-vile thing-bug interloper buggers off.

Orange This Way will be taking part in Disabled Access Day, 10th-12th March 2017

 

So, who wants a holiday then?

If you’re in the UK and you’ve looked out the window pretty much any time at all since 2016 began (or what feels like since the dawn of time) you’ll have noticed that it has been grey, rainy and distinctly dismal. And there’s nothing like a bit of dreary British weather to spark off a little holiday browsing.

It’s been over seven years since we went on a holiday abroad together. It’s something we have never done since Orange arrived, partly through fear of what may happen while we are abroad, partly because other financial priorities have prevailed and partly because it’s been so long we’ve got a little decision phobic – if we’re going to fork out for a holiday abroad after so long, it had better be a damn good one, but where to start?

When I was growing up, we didn’t go on what I would call normal holidays. Most families we knew would choose a week in France, perhaps Spain, maybe the States or the Caribbean or a winter ski trip. Whereas our family holidays were distinctly more rustic and, er, character building. Usually involving tents and fields, often in force ten gales. Or if we were lucky, a really ancient house with mice that ran around in frying pans in the night or lobsters that arrived on the front doorstep in a bucket, still alive, ready for us to literally boil them to death and hack them to pieces with a hammer.

Often there were lots of very long walks. Not because they were supposed to be long, but because someone thought it was a good idea to go off-route and promptly got us lost. Pretty much always in the rain or a thick blanket of fog. And nowhere near a pub.

These holidays obviously struck a chord somewhere because now we live right on the shoreline in Cornwall so we can experience these interestingly windswept meteoroligical conditions and wildlife encounters any month of the year.

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One of the lovely things about living in Cornwall though, is that when the sun does come out, we are right here to enjoy it. We have been very lucky and had some cracking summers since we moved here and I guess this has allowed us to fall into a certain malaise about actually booking a holiday.

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Image for PR With a View

We’ve been able to avoid the difficult questions brought about by Orange’s needs such as special assistance at airports and whether the accessible rooms in the hotel are up to scratch.

The thing is, though, we want our children to experience the world just like their peers do. But browsing for holidays knowing you need to factor in an Orange is not straightforward. My hopes were high two weeks ago when I found a beautiful resort in Greece. Ikos Resorts – everything I would want from a holiday. A little luxury, eco-credentials, great food and enough activities to swerve couch-potato-dom. We really liked the look of their bungalow suites with private pool. Spacious, perfect for all of Orange’s kit. Private pool, spot on for two little water babies and two exhausted grown ups. Stylish too. Excited, I got in touch.

“Sorry, our bungalows are not accessible” was the reply. “You might be interested in our disabled bedrooms in the main building. But they aren’t for families.” Oh.

And this has pretty much been the story of my holiday search so far. Even the legendary Scott Dunn didn’t have anything that would suit. Almost unanimously, what ‘accessible room’ means is a room for an elderly couple. Not a family with a complex little dude and a riotous seven year old.

Slightly crestfallen, I started looking at tour operators who specialise in holidays for people with disabilities. But their ranges were limited in a whole different kind of way. Call me spoilt, but I don’t want to spend my summer holiday in a static caravan in Wales or in a Costa del Complex that looks like something out of Holiday Nightmares.

We haven’t yet found the perfect holiday for us, but the whole experience of searching has got me thinking about what would make the perfect holiday for us:

  • Guaranteed sunshine and just enough warmth to make swimwear the outfit of the day. Not too much though as Orange won’t cope.
  • Luxurious accommodation of the white fluffy towel variety. Infinity pools with a pool hoist. Space. Peace. Quiet. A few well behaved children from naice families for Bea to play with.
  • A gentle, flat stroll in to a pretty marina, with waterfront restaurants that will welcome the children, accommodate a wheelchair and spoil us with gastronomic delights. And wine. Lots.
  • A nanny on hand who has experience of complicated little dudes, is confident using a hoist, feeding small people who can’t chew and administering medication (I know, I know).
  • Flights and airport transfers that can accommodate a tiny wheelchair user with ease and confidence. With dignity for Orange, and peace of mind for us. And a huge luggage allowance.
  • Simple arrangements to send equipment and supplies ahead of time – special milk, medication, nappies, specialist car seat, a beach buggy and a specialist bed. Probably a mobile hoist too.
  • Four hours or less flight from the UK, with sensible flight times that don’t involve hauling ourselves out of bed at sparrowfart.

All of this, but for less than a gazillion pounds, please.

Mark Warner are looking for ambassador families to be part of #MarkWarnerMum and #MarkWarnerDad. I guess this post is a little bit of an inclusivity challenge for Mark Warner, as we have found that most luxury travel companies (and non-luxury travel companies too), don’t really acknowledge that there are families with more complicated requirements than the average who want to go on lovely holidays too.

It would mean the world to us to be able to travel on a lovely holiday as a family. To do normal things, in our slightly abnormal circumstances, but also to make memories too. We don’t know how long we’ve got Orange with us, being brutally honest. And while it’s hard to think that way, we must remember that life is often short, sometimes shorter than you might anticipate. And if we want to do things like travel as a family, we must find a way to do them now.

****This is my entry to become a #MarkWarnerMum for 2016. Wish us luck****

What would be your ideal holiday?

The night before Advent

You could say that, in this house, we’re rather big fans of Christmas. In years gone by I would never have been one for even thinking about mulled wine and mince pies until December was well into its second half. All that changed with marrying a man with a great propensity for silliness and a childlike love of all things merry, and becoming mother to a girl who thinks July is a perfectly appropriate time to don a Santa hat and belt out Jingle Bells at high volume.

As soon as Mr Mavis’s birthday in mid-November has passed (35 now, ha ha), it’s time, in our house, to start getting festive. While this year, sheer volumes of work and other commitments have stalled the merry making so far to just a Pinterest board of present ideas, a school Xmas fair and a few jars of Christmas spiced apple chutney maturing in the larder cupboard, that unmistakable Christmassy feeling is beginning to surface. When The Fairy Tale of New York or Last Christmas pops up on iTunes shuffle, I’m no longer irritably trying to switch to something less festive. Embracing the jingle.

Our village does Christmas very well indeed. Parties-a-plenty, lantern parades, carols and barrel-loads of mulled wine and, if we’re lucky with the weather, a crisp beach walk or two. It’s a wonderful place to be at this time of year. Christmas here is about having fun with friends and family. Lots and lots of fun. Lots and lots of wine.

The Beep is already supercharged with Christmas spirit. In her world, Father Christmas has been living in the lighthouse since at least the first week of October, watching over the coast from his offshore turret to ensure every child in the village is being very good (even if that doesn’t always include her…). She’s practising her songs and her ‘line’ for the Nativity play on an hourly basis and, today, wouldn’t leave the house without reindeer antlers, a red nose and a bell. It would be fair to say that where the festive fizz is concerned, the girl is certainly feeling it.

The magic of Christmas is not lost on The Beep. She positively lives for it. And now Orange is nearly three I’ve found myself wondering how can we help him feel the magic too?

I remember with almost time warp like clarity my younger brother, himself just three, freshly laundered Christmas shirt and chinos on, smart side parting in play (sorry bro), stepping into the living room wide eyed and sparkly on Christmas morning and declaring triumphantly ‘It’s CHRISTMAS!’ The delight and wonder in his tiny voice was a perfect moment.

More than anything I want Orange to feel that wonder. To experience the anticipation of counting down the days until Christmas, and the excitement of leaving a mince pie and a glass of whisky out on Christmas Eve. To go to bed dreaming of Father Christmas fleeting through the night sky with sacks full of gifts and cheery, snow-dappled reindeer. At nearly three, children of Orange’s age would typically be jumping into the Christmas spirit with both feet.

But Orange can’t jump and neither do we know what he understands, if anything at all, about Christmas.

It would be easy to let Christmas become synonymous with everything that Orange can’t do or say. It’s such a marker of time, after all. A point to which every year returns. Comparisons are drawn, tales of Christmases gone by are told and plans for the future made. I have often found myself thinking ‘maybe by next Christmas Orange will be able to feed himself his Christmas dinner…maybe by next year he’ll be able to open a present, or sing along to Jingle Bells with his sister, even if it’s in July…maybe by next year he’ll understand what Christmas is all about.’ Or, maybe, he won’t.

This will be Orange’s third Christmas and for the first time, instead of clinging on to maybe’s and what if’s, I’m letting go a little of hoping for normality. After all, I could be waiting a long time, perhaps forever, for Orange to understand Christmas. And it would be too unbearable to think of him not experiencing a magical Christmas because we’ve failed to adapt to his way of being.

In many ways, I realised that really all that’s required is for us to think about Christmas in a different way and to appreciate that Orange can enjoy the magic of Christmas in his own way. A few carefully planned activities is all it takes to make sure he feels included, and can take as full a part in the Christmas experience as the rest of us.

While Orange may not understand who Father Christmas is, he’ll sure as hell enjoy story time with the elves in the Yurt at Eden and have a good old grab at a white beard or two. He’ll watch wide-eyed as the lantern procession weaves up the coast road through the darkness and listen with wonder to Carols from Kings (forever known as Carols and Kings in this house, thanks to the Beep). No doubt the boy will wolf down his goose and roast veg on Christmas Day, (even if mashed to a microscopic degree) and chuckle along to a Christmas film or two while Mr Mavis nurses a Boxing Day ‘beerache’ (another Beepism).

He may not understand Christmas, or be able to get excited about it, but I know now that he will feel the magic in his own way.

So instead of feeling sad, and a little guilty, that only Beep could partake in the daily December delight of picking open little cardboard doors with a fingernail and tearing away silver foil for a pre-breakfast chocolatey treat, we’ve decided to do Advent a little differently too.

Last year, one of my fellow swan mums came up with a fabulous idea to do a sensory advent calendar for her little boy. Like Orange, Freddie can’t chew so chocolate is off the agenda, and Advent seemed like the ideal opportunity to indulge in a little sensory play. Children with difficulties like Orange struggle to make sense of their world. Taste, touch, sight, sound, smell, can all be hugely overwhelming, or thuddingly underwhelming, so exposure to a variety of sensory experiences is vital therapy. Of course Christmas, sparkly, music-filled, cinnamon-scented Christmas, is almost the perfect sensory playground.

So today, The Beep and I have raided discount-stores for tinselly, glittery tat, kneaded gingerbread play-dough, filled bags of rice with vanilla and peppermint, stuck clove faces on oranges, covered boxes in Christmas paper and selected stories and Christmassy instruments (jingle bells, of course) to go in a Sensory Advent Box for Orange.

Each morning until Christmas, she’ll help me to pick an item for Orange to squidge, shake, listen to, smell, touch and (if we’re lucky), taste. And you know it was fun. Heaps of fun. I can’t wait to see Orange’s sparkly little eyes light up each morning as Beep hops up and down helping him partake in his Advent activities.

Beats the hell out of a Cadbury calendar, don’t you think?

 

‘Tis the season to be Orange

Christmas has well and truly arrived chez Orange. The tree is adorned with handmade loveliness (not made by my own fair hands I must add, but purchased from the wonderful people at Sconner Wood Christmas Tree Farm), the stockings are hanging expectantly in front of the fireplace and free flow consumption of mulled cider has begun in earnest. Piece by piece, our new home is gradually coming together and we now, at last, have a working oven in which to cook our goose, a sofa to sit on to unwrap our Christmas presents and a gorgeous farmhouse table (thank you eBay) at which we will, no doubt, eat far too much.

This Christmas, I hope, will be extra special for us. There have been times this year when I didn’t know whether we’d have Orange with us for another Christmas. Last year I was consumed with worry over whether he’d be able to hold his own body up to sit at the Christmas table with us and, while his disabilities are still a huge concern, my expectations have changed and now I just feel so grateful to have him here with us.

I don’t know how much of Christmas Orange will understand. It would be easy to focus on Beep, who started singing Christmas carols about a month ago after a brief, three month, respite and is convinced that Father Christmas is in the lighthouse, watching all the children in the village to make sure they’re being good. She has leapt into the whole Christmas experience with gusto.

More than anything, I want to make Christmas as magical for Orange as it is for Beep. Thinking back to Christmas 2010 when Beep was nearly two, the sting of comparison smarts more than a little. Trotting about on sturdy little legs, ‘cooking’ busily in her shiny new red kitchen and singing along boisterously to Jingle Bells, she was already an independent little girl. Even at her first Christmas, at 11 months old, she helped decorate the tree and dug about excitedly in her Christmas stocking for loot to unwrap. At 21 months, Orange won’t be able to do any of these things. He is still very much a baby. I recognise the sadness that many mothers feel when their youngest child leaves the baby stage but I find myself now yearning for Orange to gain a little independence, to be able to access his world, explore and enjoy it, the way a typical toddler can. At Christmas, these feelings are magnified.

What do you give a toddler who can’t stand, walk or conjure up imaginative play? Planning Christmas for Orange has certainly required some creativity and if I can’t bring him joy with the usual toy kitchens, scooters and diggers then I am determined to do so by other means. With some careful research we have chosen a few little gifts that will bring him enjoyment and, more importantly, we can still give him the experience of Christmas. The cool viscid scent of pine trees at the Christmas tree farm, the tangly delight of scritch scratching about in Santa’s beard, the enchantment and comfort of human voices and brass instruments ringing out a jubilant melody. Christmas is a sensory paradise for Orange, who comes alive with music and finds much amusement in the merrymaking of others. Just last week he was roaring with laughter, properly chuckling and squealing with glee, at the absurdity of a Punch and Judy show. I can’t wait to see what he makes of listening to the Polperro Fishermen singing Christmas carols at Cotehele, riding on the steam train through the Cornish countryside with Santa and his Elves, and watching the lantern parade through our village this weekend.

Christmas, for me, has always been a great marker of time. A gentle grounding, bringing one year to a close with happiness and celebration, no matter what has passed before it, and harvesting fresh hope and enthusiasm for the next. I daren’t wonder what Orange will be doing by next Christmas, but I can enjoy these moments, right here and right now that, without Orange in our lives, we wouldn’t be seeing, hearing, feeling or tasting with so much lucidity and gratitude.

 

Rock pool therapy

Clammy wet sand underfoot, blustery salty air, the roar of the ocean and a warm blanket of sunlight seeping through the early morning sea mist. Hallmarks of a North Cornish beach in Spring. Comforting and invigorating, the seaside is a wonderful tonic. All senses sated, most of us come away from a day at the beach feeling calmer, happier, centred. 

For Orange, a North Cornish beach is about as close to perfect sensory therapy as it gets. Mashing a handful of wet sand granules between his little fingers, the constant roll and rumble of the waves on the shoreline ringing in his ears, the visual spectacle of marbled rock formations and steep, dark cliffs all around. He was particularly taken with this little rock pool. We splished and splashed in the warm sea water for at least half an hour. For a boy who cannot bear the feeling of anything at all on his feet, his willingness to let his little toes dangle in the water and dig into the wet sand was a sight to behold.

Calm and happy, it was wonderful to see him so at ease with himself. Orange often struggles to identify with where bits of his body are in space. This is a very hard concept to understand if you don’t suffer from it yourself, but that grounded feeling we get from gravity just isn’t the same for Orange. He feels unsteady, unsure of where his limbs are in relation to the rest of himself. But on the beach that day, toes squirming about in the salt water, bottom firmly planted on a rock, he felt steadier, with a stillness and confidence I haven’t seen anywhere else.

There isn’t much documented about the power of ‘beach therapy’ but given that it feels so darn good to be on one, I’m going to spend as much time as I can with the kids doing just what you see us doing here in this photos. Sitting, splashing, singing, squelching, sunbathing.

Generations of my family have played on this particular beach as young children. As fate would have it, it is one of the few beaches in the South West that you can actually just drive straight onto, park on the sand and walk across miles of flat, firm sand. Unlike many places, this beach will be accessible to Orange his whole life, whether he is in a buggy, walking frame or a wheelchair, I will be able to bring him here as often as we like. This is one of Orange’s therapies that we can all benefit from. It often feels like very hard work indeed, helping Orange with his daily needs, but this? I feel lucky to have an excuse to make ‘beach therapy’ a regular part of our lives. The Beep is pretty happy about it too…