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.

 

And so we are here now

When I first started this blog, I was sitting in a small cottage on the cliff top above St Ives. Eight weeks previous Mr Mavis and I had sat, wine-fuelled, in our living room in south London and faced up to the inconvenient truth that since we now had an Orange, life had suddenly become a great unknown, that financially we were sinking fast and I had no idea if or when I could return to work. Our dream of moving our family to Cornwall was becoming more and more urgent, but we had no idea how or if we could do it. The only thing we did know is that we couldn’t stay in London.

Sitting in St Ives, the previous eight weeks had been a roller-coaster of emergency bathroom renovation, crumbling walls and dehumidifiers, actually painting over cracks (yes, I did this, sorry),  somehow selling our little house in the midst of the London riots and, for the first time, being told by a medical professional that there were ‘serious concerns’ about Orange followed by a whirlwind of tests but no answers. We were preparing to move to Surrey for a bit, as a stop gap, to gather our thoughts on how quickly we could move to Cornwall (a year, ten years?) given all the challenges involved with Orange’s health needs, work, finances and what then seemed like insurmountable commitments and difficulties.

It was a confusing, jumbled time of our lives, but through it we were able to gather a momentous window of clarity about where to take our lives. Driving back from St Ives that September, I remember saying to Mr Mavis ‘wouldn’t it be cool if next September when we holiday in St Ives, we didn’t actually have to drive back to the South East’. As if we could somehow swing it that within the space of a year we’d find a new house and be picking up the keys on the way back from holiday. Having dealt with all of the above.

Of course it didn’t quite work out like that, but we were only about a month off my fantasy schedule. After a year of hard work figuring out how to make the basics work for Orange down here (How good are the hospitals? Can we get Portage? Are there enough physios? What are the special schools like? Are there even any?), two failed attempts at buying houses from warring divorcees, and a gargantuan heap of family politicking that I really didn’t need while contemplating whether or not my youngest might or might not live to see his second birthday, I am sitting now in my new living room, about fifty yards from this…And it is totally amazing.

In true Orange style, he knew just how to make our move that bit more complicated by starting to have seizures on the day I was supposed to be heading down to pick up the keys. Not just any old seizures. Even an EEG during which he had a seizure, and one of England’s top neurologists couldn’t tell us what they are. All we know is that he stops breathing, goes a terrifying shade of blue and we never know whether he will come out of it himself or whether he will need resuscitation.
Four days in the High Dependency Unit when, at a number of times, we didn’t know if Orange would ever make it out of the hospital, and being let out only after having CPR training and a thorough briefing on what to do when he stops breathing, left us emotionally ragged, exhausted and completely unprepared for the move  (and you know how I like to be organised, right? Well, we really, really weren’t!) At this point I have to make a very loud shout out to Moss of Cornwall removers, the amazing cat courier for transporting our four furry babies, my mum for coordinating EVERYTHING down this end and Mr Mavis’s mum and dad for keeping us sane and fed during the whole operation. Without this brilliant, unflappable team around us I’m not sure we would have made it.
But the day came, the house was packed up, we ran round like headless chickens for a day getting the old rental place straight and then set off, weary but bursting with expectant excitement, with a fully laden Land Rover, away from our (frankly miserable and lonely but thankfully short lived) temporary existence in Surrey.
Honestly, I cannot fathom why that part of Surrey is such an inhospitable place but we were utterly depressed by it. The competitiveness. The aggression. The desire to acquire at all cost and then to show off about it. The maniacal bravado doing a slapdash cover up job of lives plagued by a lack of any real joy or fulfilment. False happiness fuelled by consumption. The casting aside of those who are less capable or who don’t fit a certain mould of behaviour. Most of all, the systematic exclusion of those with additional needs, be that a disabled child or an elderly person in need of care. Not an existence I can countenance, at least. Perhaps I took it all too seriously but I cannot tell you what a relief it is to be here in Cornwall.
Our journey down was eventful. Driving through the night with Mr Mavis in the back keeping a hand and an eye on Orange in case of seizures, little Beep riding up front with me under a blanket, wide eyed and brave in the face of a HUGE electric storm and driving rain so thick and fast we were down to 20mph a number of times, winding our way down a moonlit and slightly spooky A303. We arrived at my mum’s late at night, full of adrenalin from the day and the drive, and settled in for a much needed glass of wine and a good sleep before heading on over to our village to move into our new seaside home.
We have had the warmest of welcomes in our lovely new village. I’m not sure we’ve socialised this much since before we had children. Strikingly, I have encountered a gentle positivity about Orange. Within our first week, our new GP had told us the story of a lovely undiagnosed lad he knows who is sixteen now and doing just brilliantly, who has amazingly similar features to Orange, I met a young mum who lives in the village who has a little girl with Mosaic Down Syndrome who was like a breath of fresh air and has also kindly lent us a fabulous Makaton signing book for us to use with Orange, the pre-school and primary school have been nothing but warm and positive about having Orange join them at some point and applying for funding on his behalf and, perhaps most miraculously of all, every referral we needed to transfer for Orange is coming through without a hitch with information being provided whenever and wherever we need it from the authorities.
The contrast with our experience in Surrey is quite overwhelming. It’s not just that the services seem to be better organised and more accessible here, it’s the attitude. For the first time in the history of Orange, I feel supported in my role caring for him. And whenever I have a panicky moment, the calming influence of the sea is but a stone’s throw from my door. We have been to parties, hung out with our neighbours and, just last night, had the most fabulous dinner with new friends with unbelievably good food, free flowing wine, and some very entertaining stories about cat burglars, heated shell suits and a dish full of car keys (not what you think!) which are totally unsuitable for this blog. We are having a brilliant time.
I know there will be tough times ahead but, perhaps for the first time in my life, I feel like I’m in the right place and with the right people. Never have the two crossed paths before. And it feels like Home.

 

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…

 

Food unglorious food

Don’t get me wrong, Orange loves a good meal. Just like his parents 😉 But I often get asked by The Professionals how his feeding is going. And I don’t really know what to say.

When we first started weaning Orange, he enjoyed chewing on a banana and was very happy being spoonfed all manner of mashed vegetables, fruit (and quite a few Ella’s Kitchen pouches when I just couldn’t be bothered).

But it was always different feeding Orange than it had been with The Beep. It still is. He likes to hold a spoon while I feed him and, if I load it for him, he will usually get it somewhere in the direction of his mouth. But he’s very far indeed from feeding himself. He should be doing this by now but he’s just not bothered.

Finger food? Well. That might as well just not be there as far as he’s concerned. His little hand might, on a good day, reach out for something I’m holding, but it’s usually soon lost and forgotten, squashed and warm in the depths of his high chair.

I feel under huge pressure to get Orange feeding himself. Every mealtime my heart sinks as he just sits there like a baby bird opening and closing his mouth, waiting for me to spoon in pasta or casserole. Or not, as the case may be. He’s been rather difficult recently as his tastes have started to develop. I need to up my game on the cooking front. He’s a discerning diner, is Orange.

It’s extra hard, given he can still barely sit in a high chair and he struggles to chew and swallow. If I rush him even just a little too much, he chokes and vomits.

I know I should feel grateful, at this point, that he doesn’t need to be tube fed. There is always that possibility in his future. But instead I spend most mealtimes wishing he’s just participate a little bit more, or that I could hand him a piece of toast and he’d plough on in. It’s heartbreaking to watch him just dropping bits of food down next to him and, seemingly, not caring. The less he responds to finger food, the less opportunity I give him to get the hang of it. I just can’t bear watching him fail. Again.

I have a new plan, which is to offer him some finger food with one of his meals per day, for the next two weeks, without fail, and just to not care what he does with it. It is 12.05. Caribbean Chicken then Orange, followed by, er, corn snacks. Gotta start somewhere…