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.