When a multitude of questions remain over your child's health and a veritable army of institutionally appointed 'experts' are involved in their care it's even easier to let one's self-confidence falter. We know our own children best and yet the weight of expert voices that surrounds us when a child has complex additional needs can begin to drown out that all important human element that is parental instinct.
Of course, it goes without saying that we are hugely grateful for all the support, guidance and advice we receive for Orange. We have (I think) a truly excellent team around us. But there are times when it feels like our own voices, opinions and instinct are drowned out by the authorities that now encircle our lives.
Teams of physiotherapists, occupational therapists, speech and language therapists, audiologists, visual support teachers and educational psychologists tell us what our child is capable of and what will aid his development and we are expected to follow their lead, mostly without question. Teams of neurologists, geneticists, cardiologists and paediatricians give us educated guesses on what might be causing our child's difficulties and the aspects of his health we should be concerned about and not concerned about.
Teams of social workers and early support workers evaluate how we are coping with everything having an undiagnosed child throws at us. Teams of occupational therapists, grant officers and surveyors even examine how we manage with daily life with an immobile child in our own home and make open judgements on which door we should use to get in and out, how we should bath our child and move him around from room to room.
We trust and respect our team. We listen to them and value their input. But there are times when it feels invasive. There are times I want to question. Times when I want to wrap up my small boy and take him away from all the institutionally imparted advice, the paperwork, reports and evaluations of our lives. There are times when my instinct as a parent tells me the right thing, actually, at that moment, is to close the doors to the world and cut our own path for a while.
Because how do we know that what we are told is right? How do we really know? There is a huge leap of faith that has to go into following the professional advice we are given. Often it is given on the basis of seeing our child for less than half an hour, sometimes on shaky scientific evidence and little true knowledge in the face of a child whose diagnosis remains elusive. How do we know that this one professional sitting in front of us is right?
There have been times when I have known that what we are being told or advised is incorrect and not in the best interests of our child...
The cocksure paediatrician who confidently declared she had 'never failed to find a vein' for taking blood who then failed, sending Orange into massive sensory overload that triggered a seizure, caused him to stop breathing and precipitated crash teams running from all corners to resuscitate him as he lay on my chest, blue and still. I wish to this day I hadn't let her try.
The nurse who missed his post-op medication and barked at me that 'it wasn't on her schedule and we'd have to wait for the next round' when I requested his overdue painkillers, mere hours after he had been through invasive surgery. It took shouting and tears (me and Orange) to get his meds given before he was overwhelmed with pain.
And less catastrophic... the wheelchair services occupational therapist who thought it would be fine to order a wheelchair for Orange in which he could launch out sideways and head bang against a metal handle to his heart's content. Or perhaps the trillionth time it's been suggested that 'messy play' is the answer to all our feeding woes and the incredulous looks I have received repeatedly when I explain again that yes, my boy is very happy indeed to rub sweet potato and mackerel all over his own head, with glee. Delighted he is. But put it in his mouth, oh no, not so much...
Over the years I am learning to evaluate. To listen, to learn, and also to question. More than that I am learning once again to tune in to the parental instincts that I have at times cast into doubt in the face of more conventionally knowledgable voices. It's easy to forget that we know our own child best.
Human beings are not infallible. Sometimes, professionals are wrong and in my experience it is often my instinct that will tell me as much. It is often my instinct that tells me what is right for Orange, what will support his learning and development best and what will ensure he has a happy, fulfilling life with as much 'normality' in it as we can muster.
During our summer holiday, I read a very interesting book lent to us by a friend of my mum's. A book by a lady called Dorothy Butler, about her grand-daughter Cushla who, like Orange, had complex disabilities of unknown cause. Medical professionals and therapists provided little by way of useful practical advice for the family and faced with a child who cried and cried in distress day and night the parents followed their instinct and did what they knew best. They read to her. Read and read and read to her. And it unlocked something in that little girl that led to her developing more skills than anyone could ever have predicted.
The story of 'Cushla and her Books' is both an academic study of the power of language and a hugely inspiring tale of a young family that treated their complex child with love and instinct, with the most unbelievable results. Their child, once disconnected from the world by her disabilities, lost, lonely and unreachable, blossomed.
My instinct has told me that Orange needs to be surrounded by music and nature. Music speaks to him in a way that words alone often do not. When he was smaller, the only way we could get him to eat was to sing to him. As a three year old, he comes alive at the sound of his favourite tunes, dancing and singing and engaging with people around him. In nature, Orange is calm, happy, thoughtful and playful. He explores his world openly. It was on the beach in St Ives that he first showed us his little personality and that he was capable of play, and learning.
Nature and music are vital for Orange. And yet interestingly not once has any of his NHS/local authority appointed professional team (as good as they are) suggested that either is of significant benefit. Reading Cushla's story has reminded me that we ignore our parental instinct at our peril and that listening to it can only be a good thing.
As the new academic year begins (still feels like a good time for a fresh start, even aged 35), I've promised myself that I will listen to my own instinct with just as much intensity as I listen to our professional team. I will find the courage to question, to push for what I feel is right, to say no to medical procedures I know are not in Orange's interest (and hope I am not arrested for doing so...) and to follow my heart in knowing how to captivate and engage my little boy in his world.