"What on earth is that?" I hear you say. And a few short years ago I would have been saying the same. How in the 21st Century, can doctors in the Western World not work out the underlying cause for a collection of symptoms? But you would be surprised. There are many, many people living without a name for their difficulties, disabilities and challenges. Most of them are children - because some do go on to receive a diagnosis as time (and medical science) progresses, and also because some of them don't grow up to be adults. Too many. And children without a diagnosis are more likely to receive poorer care and support as with a diagnosis, comes understanding and a degree of expectation. There is none of this without a name.
Bringing up a child - or children - with additional needs of any kind is exhausting and often overwhelming. There is a wonderful essay called "Welcome to Holland" by Emily Kingsley which sums up so eloquently the painful journey parents of children with additional needs and disabilities go on. It is now a moving YouTube video here.
You see, without a name for those symptoms and challenges your child or children are struggling with - that you are drowning in as a family, you become even more isolated. There is no signpost to direct you to a support group, someone who knows what you are going through, no online information on what to expect.
Diagnoses open doors, and sadly- without one you can feel utterly alone.
What IS shocking is how easily this could be your kids. Or mine. Because that's the isolating position we find ourselves in here - a growing collection of symptoms, many of them with a name but no definitive umbrella term to explain why we are dealing with so many different things.
It would be all too easy to get constantly caught up in it all, and sometimes we do. It's unavoidable. But most of the time, we are parents with four wonderful children. Maybe life isn't exactly what I planned, but in many, many ways, it's actually better.
If you haven't seen it yet, I urge you to see the amazing video Renata from Just Bring the Chocolate has made for Undiagnosed Children's Awareness Day.
It is a masterpiece which has taken many hours of work, and which carries such an important message-
Children with or without a diagnosis are still children and deserve the chance to BE children. No one with additional needs should be defined by their label - and those without one deserve their childhood as much as any other child. The intensive focus on symptoms whilst seeking diagnoses should never hide the child within.
Which made me think.
Because in recent weeks I have become increasingly aware how we are blurring the boundaries between childhood and adulthood for ALL children, and in seeking to support children's "rights" and "needs" I believe we are actually depriving of them of their one fundamental right - the most important of all, to be the child that they are.
My sixteen year old had blood tests and I couldn't access his results without his permission. Yet he's a child, and I'm his mother with parental responsibility. My twelve year old is supported at school through the CAF process and, as a twelve year old is officially supposed to be present for meetings, involved in them and receive copies of the minutes. He's twelve. With Autism. So his emotional age is considerably lower than twelve - but that's almost irrelevant as in my opinion any twelve year old would be too young to hear adults discussing them in this way.
Then there are the doctors who discuss scary medical conditions in front of young children, even sharing diagnoses (like our son's Aspergers Syndrome) with the six year old child without consulting the parents to find out whether their views on this.
Children should not be "seen and not heard" they DO have rights and needs, but the most fundamental of those is to be allowed to BE A CHILD. And that means being treated as such. In an age appropriate manner which always recognises the need to preserve that innocence which - once lost, can never be regained.
Children with additional needs often grow up faster than their peers, facing issues most adults never have to consider. For those without a diagnosis the world can seem an uncertain place. If we cannot give them a diagnosis, at least give them their childhood.
Think out of the box - see the child underneath.