Three is a magic number

Three years ago today I was sitting at home, next to an over-enthusiastically and, as it went, prematurely and redundantly inflated birth pool, wondering why, in the name of sanity I was still pregnant. Anyone who has ever gone ‘overdue’ will know and understand well the boredom, angst and at times, downright desperation I was feeling as twelve days (and five sweeps) came and went since my due date.

Another five very long, waddling, days later, having admitted defeat on our hopes of ever having a lovely home waterbirth, advised to turn our backs on nature in favour of the dreaded ‘medical intervention’ and into a frantically busy London labour ward we went. The next day, on a beautiful sunny Spring afternoon, an Orange was coaxed into the world via an unwelcome mix of prostin gel, an alarming looking knitting needle contraption, a lot of uncalled for rummaging and uncomfortable monitoring and a vacuum cap.

Oh and I can’t forget the visit from an apparently high profile female politician when I was mid-hypobirthing breathing in the garden suite, overlooking the Thames. A photo opportunity you say? Erm, no thanks…

An apparently healthy, shouty little Orange was born and I was instantly itching to get out of there. No breathing difficulties, no jaundice, no terrifying APGAR scores or SCBU monitoring, no IV antibiotics, blood tests or phototherapy lamps. No painful shuffle, pushing a tiny yellow person in a plastic tub to sit in a corridor and wait for the latest bilirubin results. No plastic toast and curt ward staff. No week-long incarceration with wailing, snoring, post-natal room mates with fingers missing who had just arrived on a plane from somewhere terrible to give birth in the UK (I kid you not).

The next morning we were home. After our experience with Beep, which brought with it all of the above horrors and more, it felt like we had dodged a bullet. But as the last few years have shown us, Orange turned out to be a little more complicated than that.

In some ways, the gentle unfolding of Orange’s ‘swan’-ness has been a kind and easy way to adjust to a more unusual way of life. Unlike many swans, there was no premature delivery, no early surgery, no long months in the NICU, no bomb-drops from paediatricians about syndrome like features. Just an unhurried dawning of small but significant realisations.

Before Orange, I was pretty ignorant and afraid of disability. If I had known, from the start, the difficulties he would be facing, I expect fear and despair may have entirely swallowed me up. As it was, we had some blissful early weeks to bond, attach, and settle in to being a family of four before the shadow of doubts and worries drew in.

And now, almost three years on, our lives are entirely different to how we left them, that Spring morning in London town. My Bugaboo Cappuccino perfect world slowly shattered, replaced piece by piece by something far less magazine glossy, more unapologetically extraordinary. My rough draft for the future has been torn up and cast aside but now sitting in its place is something far more grounded, spirited and at times terrifying, but fulfilling. Tougher, yes. But whole.

Next weekend, Orange will be three. As we draw closer to this milestone, the boy inches towards the threshold of being considered by society as officially ‘disabled’. At three, mobility allowance becomes a given, as does his Blue Badge, a public label of disability. Being unable to walk, at aged three, marks him out no longer as a slightly large baby in a buggy, but as a child who needs a wheelchair to get around.

Turning three, for any child, is often a pivotal moment when the word ‘baby’ vanishes from family vocabulary. This is no different for Orange, and us. Although the hallmarks of babyhood remain very much a part of our lives they are moving into a different realm, that of disability rather than infancy. Nappies, wheels, a bed with bars, spoonfeeding at mealtimes…We still hope that Orange will move on from these things but if he doesn’t? Well. That’s ok too. I know now that we will manage and still be the people we always were, just with a different perspective.

Orange may not yet be capable of the independences of a typical three year old but I hope, this year, to be able to give him some of the freedoms enjoyed by his toddling peers.

A pre-school place.
Liberty to learn, progress and be an increasingly autonomous person in his community.
And, perhaps even a birthday party invitation or two…

With Orange, and all his many mysteries, each birthday is loaded with more than its fair share of celebratory excitement, but also weighted with the consciousness that time continues to roll forwards with little consideration for him, trying his hardest to catch it but slipping slowly further behind.

But we cannot sift experience and take only the part that does not hurt us. We are learning patience, and witnessing miracles, almost every day with Orange. And as we crash through the floodgate that is Orange turning three, I know that this unplanned adventure, this unimagined life, will not be the shiny, polished, picture-perfect portrait of performance I once aspired to, but will be sunshiney and happy all the same, with many a magic moment.


It’s not confidential, I’ve got potential

I’ve learnt something about myself these last few weeks. When it comes to writing, I’m the antithesis of a fair-weather friend. While the temperature has been rising in the glorious sunshine here on the south coast of Cornwall, my motivation to put finger pads to type pad has been languishing below zero. Somehow sitting on the beach and drinking wine has seemed a more fulfilling and appropriate use of time. The Beep has splashed, paddled, shrieked and run about with her friends, Mr Mavis has swum in the sea and consumed an even larger amount of wine than me, and Orange has been mostly enjoying the sensory input provided by covering oneself entirely from top to toe in sand. Beach Therapy For All, if you like.

But this evening it is raining. The tap, tap, tapping of rain on the slate roof has filled the silence left by the now absent seagulls who have been cawwing, cooing, soaring above the house and occasionally divebombing our cats in the sunny weather. Now the wet weather is here, I’ve snapped out of holiday mode and am back behind the keyboard, tap, tap, tapping in time with the rain.

Of course the learning of recent weeks goes well beyond and above discovering my own ability to take procrastination to a whole new level when the sun comes out. Orange has been constantly surprising us with his ability to learn new things and has had a rather exciting few weeks…

Back in May, I took Orange to meet neuro-developmental guru Andrew Brereton, who runs the Snowdrop Programme for children with all sorts of brain-related disorders. The programme is so fascinating, it is more than worthy of its own post which I shall write in due course, but in essence, it’s a programme of neurodevelopmental stimulation which is designed to help children like Orange reach their full potential. Orange had an assessment with Andrew that left me feeling so uplifted and positive about my boy. I have full comprehension of the fact Orange has a great many difficulties, but hearing him described as a ‘sociable young boy who is full of potential’ was such a world away from the endless reports we receive spouting medical jargon that bear no relation to the boy we know. It left me feeling positive and reminded me to focus on what Orange can do, rather than what he can’t and to remember to always give him the opportunities and the space to grow and develop, and not to let him be pigeon-holed or written off as a ‘Boy Who Can’t’.

I had started to blinker myself into preparing for a life of caring for a little boy, who would eventually grow into a not so little man, who could not move his own body around, or know how to ask for a drink when thirsty, or use the toilet, even. In preparing myself for this I had lost a little spark, withdrawn hopes and dreams, and shifted my mindset too far in a direction I actually don’t know yet if I need to map out.

Hearing Orange described as having ‘potential‘ has recalibrated my mindset entirely. And since that day, something remarkable has happened that has left me a little awe struck at the power of positive thinking. It could be an enormous co-incidence, of course, but in the days following his assessment Orange quietly just got on with doing some amazing new things. Things I had begun to gently erase from my list of hopes for him but that are now centre stage on his agenda. The ‘Boy Who Can’t’ is now most definitively The Boy Who Can. The boy who can sit himself up from lying on the floor. The boy who can inch himself along the floor, commando style, to get to a toy. The boy who, when feeling under the weather, or just a little sad, can now ask for a ‘cugga’, his very own Orange branded mash up of a cuddle and a hug. The boy who can put a handful of spaghetti in his own mouth, and take a bite from a bbq’d sausage. The boy who can wave and say ‘haaarrrooow’ when a pretty lady arrives at the back door. The boy who can kiss and cugga his toys and ‘sing’ harmoniously along to a tune and bang his feet in time to the music.

Experimenting with spaghetti

In the time it has taken me to restore faith and hope in Orange’s ability to learn, he’s just gone and got on with doing it. Ever since he was small, he’s had an innate capability to match his actions and demeanour to the mood in the room. When faced with Dr Doom, his first paediatrician, he switched off. Completely. Think I can’t see? Well then I’ll just sit here and not look at your face. Think I can’t sit up. OK, I’ll just lounge here on the couch listlessly… But hang on, you, oh lovely Portage teacher, think I can learn to talk? Right then, I choose you to receive my first wave and a friendly hello. Think I’m a boy with potential? Great! Just watch me.

Left playing on my front…ta da!

As well as the renewed positivity in the house, spurred on by the glory of sunshine, warmth and sparkling seas, Orange has been receiving a lot more input of late. His Snowdrop programme is a daily affair of repetition, repetition, repetition. Body brushing, massage, deep pressure, spinning, auditory stimulation, visual tracking, over and over and over. Designed to help desensitise some of his over-sensitivities and bring him more in touch with his own body and brain, and how they connect, it’s a Groundhog Day fest of tactile, vestibular and sensory input. Since we started, I can already see great changes in him. Orange is holding himself better, is more steadfast and sure-footed in his body movements, direct in his eye contact, alert and aware of his surroundings.

In recent weeks we have also been taking him to weekly hydrotherapy, upped our game on the daily physio and have been partaking in the most brilliant, positive, eye-wateringly fabulous weekly sessions with the aforementioned lovely Portage teacher who has such a lovely way about her, Orange has decided he wants to show off at every visit and do something new that makes us both blub.

Buoyed up by Andrew’s positivity about Orange, I’ve found new strength not only to get on with his new programme, but to focus time and attention on all of Orange’s therapies not just with greater intensity and enthusiasm but also with a sense of joy and freedom in the knowledge that I can help him fulfil his potential, whatever that may be.


A baby no more?

It’s a big day this Friday, and I don’t just mean International Women’s Day, or the mums’ tea party at preschool (although both of those are pretty important, especially the latter which I am told will involve cake). This Friday, Baby Orange turns two. The big 2. In my mind, turning two marks the end of babyhood in a child’s life. When The Beep had her second birthday I remember feeling sad that her baby days were over but excited for her future and proud of all her blossoming skills and talents.

For Orange it’s a little different. At two, he will still be very much dependent on others in the way a small baby is. Lots of the markers of babyhood that mothers are often quite relieved to leave behind remain a part of our lives. I found this interesting post written by a mum whose last child was just stepping out of babyhood and the comparison is stark. On her list of things she won’t miss about the baby days there wasn’t really anything I can say we’ve waved goodbye to yet, or will be anytime soon:

1) Pureeing baby food. If chewing actually means squashing food on the roof of your mouth while not moving your jaw at all then Orange has got it nailed. Of course this means everything has to be mashed. Finger food? You must be joking. I’ll just wave it about and laugh thanks mum.

2) Not knowing what’s wrong. Orange can’t tell me with words if he’s bored, doesn’t like the green beaker, wants to go to bed, or would rather watch Ben & Holly than Peppa Pig. Family and friends will testify to the fact that he’s a very vocal little boy, jabbering away hours of nonsense and giggles and singing along in the car (to 80s power ballads if he gets his way), but he cannot talk. He is getting better at shouting and whingeing though, so watch this space.

3) Wondering whether Play-Doh and crayons have nutritional value. Well, we haven’t even got to that stage yet and you know I would be delighted if the boy would put anything in his mouth at all. (see point 1).

4) Reading the Usborne ‘That’s not my…’ (fill in with bear, cat, monster, princess). Orange loves a good book, I mean really loves a book. He will squeal with delight at Peter Rabbit, point at the page and, if you’re lucky, will turn the page with you at a moment of his choosing, but whether he has any idea what a rabbit is, or even a bear, cat, monster or princess, it’s impossible to say. His level of understanding is a constant mystery to us. All we can do is continue to give him as much variety in life as we can and hope that some of it sinks in. Or creates the right neural pathways. Or something like that.

5) Possets. Substitute for dribble. Constant dribble. We have low facial muscle tone to thank for that, which reminds me we need a bulk order of those absorbent bandana bibs. Ok, it’s not milk sick but it’s a pretty slimy affair with an Orange about.

6) Dirty nappies. A fact of life in our house for many more years to come. See point 8. And my goodness are they expensive. One of the ‘hidden’ costs of having a child with disabilities.

7) Watching The Wiggles. Read ‘Death by cBeebies’. Actually I’m quite happy to keep this one. I can’t be the only mum alive who has accidentally left Nickelodeon on after the kids have gone to bed, or absentmindedly started humming the tune to the Jimmer Jammers while cooking dinner. And I know of at least one grandparent who is guilty of putting Peppa Pig on the telly when there are no grandchildren on the premises ;). Children’s TV is cool. I’m sure I might feel a little sad about it if Orange is still watching Mr Tumble when he’s 15 but for now, it’s a welcome and jolly addition to the household of a morning.

8) Reading Princess Polly’s Potty book, again. It’s items like this that I pick up and hold and wonder whether we should keep, just in case, or send to charity because they won’t be needed again in our house. For the foreseeable future, Orange is in nappies. He can’t tell us when he needs the loo, nor can he get there independently, although he makes a pretty damn big deal of a number two. Called being a boy, I guess.

9) The inability to amuse oneself. It is at this point in the article that I’m afraid I lost patience. Bemoaning lack of time to get anything done pretty much guarantees getting the backs up of most parents of children with additional needs. Irrationally and unreasonably so, probably, since no-ones trials and difficulties can really trump another’s outright, but the hours, weeks, months and years of extra work that go into raising a child with additional needs go way over and above the experience of raising a typical child. Time to oneself, even to work, is often a long forgotten luxury.

10) Bottles and multicoloured Ikea plates and straws and tiny tupperwares and the accumulation of plastic that seems part and parcel of having a baby. Ha! Ha ha! Come look at my house lady and I’ll show you accumulation of plastic. Currently we have a giant chair on wheels with an oh so tasteful decal of a bumble bee on the sides, and a jauntily decorated wooden standing frame with quite possibly the scariest looking monkey you’ve ever seen on either side. A changing platform, bath hoist, stair lift and outside platform lift for the garden are on the cards. Plastic matting, sensory toys, special beds and multiple seating options too. We are already the proud owners of mountains of plastic toys that generate some of the most irritating sounds the human ear is ever likely to behold, and boxfuls of various primary coloured articles bought in panic, seeking something, anything, that would attract (and maybe even hold for a second) the attention of a boy who at one stage we were told probably couldn’t see or hear. Come and gawp over our ever growing collection of beakers, cups and bottles that Orange has no idea what to do with, swathes of syringes for his meds, and spoons he won’t put anywhere near his mouth (see point 1) and then we’ll talk plastic.

All these markers of babyhood will be part of Orange’s life well beyond his second birthday. In many ways, caring for Orange is quite a lot like having a giant six month old. And yet something strange is happening that I can’t explain. Given his high level of dependence and extreme delays in development, it’s an unexpected progression but he’s seeming more and more like a boy every day. This has taken me by surprise and I still can’t quite put my finger on what’s changing. It’s subtleties of face shape, expressions of emotion above and beyond a baby cry, a blossoming sense of humour and revelry in the ridiculous, a deeper, grown up boy’s tone to the voice and an alarmingly toddler-esque whinge that has come to light only in the final countdown to turning two. Is it possible that my little boy, who can’t yet crawl, stand or feed himself is managing to be bang on time with the terrible twos?

For a lot of mums whose children have disabilities, the second birthday is a bit of a watershed moment. The threshold between baby and child is well and truly crossed according to the calendar, but the little person they see in front of them tells a different story. It is often at this point that disability becomes more strikingly obvious to the outside world. A baby in a buggy becomes a larger child in a posturally supportive pushchair, a lack of language and mobility a source of surprise and questioning, getting in and out of cars with a child who can’t support their own body weight starts to become a real challenge and you begin to wonder what your child will sleep in when they outgrow their cot, or how you’ll get them up the stairs to bed when they’re a year, or ten, older and still unable to walk. That sort of thing.

What really hits home though is the lack of friendship. Lacking mobility and communications skills, and spending vast amounts of ones time at therapy and hospital appointments seriously limits a child’s ability to make friendships. At this stage in The Beep’s life, she was looking forward to sharing a joint birthday party with her best friend, played an active part in planning the food they would eat and the games they would play and then stood by her right not to do any of it on the day of the party at all. ‘It’s my party and I’ll grump if I want to’ was The Beep’s birthday mantra. But she had friends who came and enjoyed the party around her. Real friends who sang, painted, hugged, ate, popped balloons and fought over toys. Orange doesn’t have that in his life. My big goal for his third year of life is to help him develop relationships with his peers. I’m rather excited about a very promising friendship with another little SWAN who lives a few miles away and I am going to be brave and take him to the new village toddler group. And try not to let my jaw drop at all the amazing things the other kids can do.

With all that lurking in the background and tip toeing its way into our reality day by day it would be easy to feel slightly melancholy about Orange’s second birthday but it is with great relief that I am feeling a burgeoning sense of excitement. The presents are wrapped (boy were they hard to choose, but that’s another post), a day out at the aquarium planned with tea and cake in the afternoon. Beep has already put her hand up for helping Orange open his gifts, the offer is sweet even if the motive is suspect… In fact I have her to thank for a lot of my unexpected excitement I think. Flicking through baking books together this afternoon she declared that Orange must have a dinosaur cake for his birthday. A chocolate one, with green buttercream and scary spiky teeth. A Tyrannosaurus Rex it must be, apparently. I have stood in the kitchen for precisely 23 minutes this evening trying to figure out how to fashion various cake tin shapes into anything vaguely resembling a dinosaur but will probably end up winging it well in the small hours of Friday morning.

Expect pictures in the coming days of badly decorated cakes and chocolate covered children as we say Happy Birthday to our darling Baby Orange. And here’s a picture from this evening of some of that ever multiplying plastic, pretty spectacular huh?


Conquering consonants

This last week has been somewhat of a struggle. I cannot seem to shake this damned virus. I have been coughing and coughing and coughing until I am almost sick. The thought of sitting down to update here has been constantly on my mind but somehow I couldn’t dredge up the mental stamina to open a new blog post, let alone fill it. Really all I have been capable of in the evenings is flicking between email, facebook and twitter, letting the rest of the world fill my head with news, entertainment and general drivel.

In the midst of all this Orange has done something rather wonderful. One morning while sitting in bed cuddling my two bright-eyed morning babies and watching Peppa Pig on my iPhone, Orange turned to look at my face, raised his little eyebrows and said ‘Mama’. If it is possible for a heart to actually melt then this is the moment that mine did. The loveliness of the moment was all the greater because The Beep was there to share it and we were all snuggled up under my duvet watching the sunlight peeping through the trees. Sadly daddy was not there with us, but I know he’s secretly holding out for Orange to say ‘Dada’, so I’m coaching him to say that now instead.

The voice of doubt has been ringing louder in my head though, despite Orange’s New Word. I don’t know why, maybe it’s this virus that’s making me feel more negative than usual. What cuts deep is when The Professionals have their say on Orange’s development. They don’t want to commit either way, so come out with some vagary like ‘well, his use of consonants and good variability of tone are both promising signs that speech might develop’. Note the word ‘might’. So instead of revelling in the joy of my little boy saying ‘Mama’ (and he’s done it again since, by the way), I’m left wondering if it was just a fluke and whether I should even be celebrating it? If Orange didn’t have the difficulties he has, I wouldn’t even doubt new milestones that he hits. But because, week to week, we hear a different story from professional to professional, my confidence in assessing my own son’s capabilities is at an all time low. I doubt myself. I don’t want to seem silly. So I have kept some of his achievements to myself. I think, no, I know that I need to stop doing this.

This post is the first step back to a more positive place where Orange’s achievements are celebrated with pride. And not just outward pride. It’s the inner confidence that I need to work on now. That beaming, sure footed feeling you get when your child does something new. So here’s to Orange. And here’s to words. Bets on for what his next one will be?

Orange and the fish

As sensory experiences go, it doesn’t get a whole lot better than this. After our lunch in the sunshine was rudely interrupted by a sharp rain shower we ran for shelter in the fish emporium at the garden centre. Row after row of exotic little fish swimming this way and that, and that comforting bubbly sound from the tanks. Orange was in heaven.