Not many generations ago, being the Parent Carer of a child with disability or chronic long term illness was relatively rare. We've all read stories in novels and seen them in television dramas.
If a child was born with some sort of obvious deformity, the midwife may well have failed to clear its airway and told the parents that it was a stillbirth. If it was very sickly, it would fail to thrive and die in infancy. Before antibiotics a weak child would have sooner or later succumbed to infection and died young.
A surviving child with an obvious disability would have quite probably been kept in an institution, hidden from view.
These days midwives and doctors would be dragged through the courts and blazoned across the front pages of the tabloid press, if they didn't do everything in their power to ensure the survival of the weakest of babies. A baby born the size of my hand, can now be kept alive and develop to full term in an incubator, instead of the womb. Increased survival rates mean that a higher proportion of children with long term medical and neurological difficulties have the opportunity to grow up. We no longer hide disabled children in institutions, they live at home with their families. Inevitably more parents find themselves as Carers.
You talk to your pregnancy bump and dream of it being clever, rich and famous and keeping you in comfortable retirement. Then there's a difficult or premature birth or something just doesn't seem quite right. You get extra visits from the midwife, or the health visitor finds herself repeating one of the milestone checks.
It may be a gradual process, or it may be quite sudden, but one day it dawns on you that all isn't quite as you expected it to be. This adorable long awaited child is different, less than the perfect dream.
You find yourself with a string of hospital appointments where everyone uses words you've never heard before. You start to pick up the medical terminology and to use it when talking to friends or family, who look at you strangely assuming you are showing off, exaggerating or attention seeking. You come face to face with the reality that your life will never be the same again and that, with or without your partner or co-parent, you are alone.
Or maybe the child is in perfect health, but when she or he starts to socialise in mums and toddlers, nursery or the reception class there are arguments and tantrums, toys unable to be shared, circle time not joined (because your offspring was hiding under the coats, waiting until the daily ordeal was over). Maybe she's clumsy and breaks things, or has multiple minor accidents. Maybe he finds it impossible to learn to read. Maybe your child can't sit still and concentrate and is constantly being reprimanded for bad behaviour. You ask for some kind of assessment but the school refuses. Your child gets branded as uncooperative and you start to realise that something is wrong.
Ideally the medical or educational personnel involved should take you metaphorically by the hand and lead you kindly and gently through the maze of medical or educational or neurological assessments. They should help you to find the best of everything for your beloved child, help you find support for yourself and other family members. Social services could make life easier for your family.
Sadly thats rarely how it works. Doctors don't like difficult or insoluble or hard to diagnose conditions, which clog up their waiting rooms or cost the practice money in onward referrals. Schools and education authorities are budget driven and don't want additional children with expensive and cumbersome Statements of Special Educational Need. Social services are so obsessed with 'Child Protection' that they no longer consider support for loving families in difficult circumstances.
Parent Carers finds themselves as warriors, fighting for diagnosis, services and support. Employers may be critical of the time spent on the telephone or at appointments. Jobs may be lost or careers downgraded. Siblings may find that they get less parental attention and are often bullied by classmates who don't understand. Grandparents probably find the whole situation incomprehensible. Aunts and uncles stand back and keep out of it, so there are less invitations to family gatherings, less visits and phone calls.
Parent Carers clamour more and more urgently for vital diagnosis, services and support. Somebody somewhere may suggest that the frantic Parent Carer is attention seeking, in which case the situation of 'no available resources' turns upside down. If a Child Protection investigation is instituted, the funds flow in for endless meetings and innumerable assessments, but rarely the ones which will actually help the child.
Only this morning I had an email from Disability Today with the results of a survey demonstrating that many Parent Carers are near to breaking point.