'My baby is in pieces all around the city. It feels like she does not belong to me anymore'
(Editorial for TAC Bulletin for June 2011)
I may not have got the words exactly as they were spoken, but this appeal came to me when I was a keyworker with One Hundred Hours during the 1990s. I want to use this article to argue in strong terms that our customary UK approach to infants with disabilities and special needs is a sad and inappropriate hangover from the middle of the last century, and does no favours to mother or baby – and even causes direct harm.
I have had quite a few years to observe how interventions are offered having a younger brother who was born with cerebral palsy and learning disabilities and who died a few years ago at the age of 40. I have seen two important changes in this time: firstly, children with an IQ (so-called 'Intelligence' Quotient) of less than 50 are no longer excluded from our education system. Secondly, the old 'mental handicap' institutions (bleak workhouse-type accommodation for many thousands of people from infancy to grave) have been closed.
What I have not seen is any parallel education or therapy reforms or advances in how we support these babies and pre-school children and their families. Our conservative professions are stuck fast in the age of black and white television and appear to be blind or in denial about the harmful effects on babies and mothers.
Presented with a baby with a multifaceted condition, perhaps resulting from neurological impairment, our instinct is to slice the whole child into fragments: 'You take the eyes, I'll look at the ears, we can send the muscles over there, the people next door can look at the hands and they can sort the brain out at that new unit.'
This unthinking and insensitive approach brings a host of people to the home (once a private domain) and sends the anxious parent off on countless trips where the vulnerable infant will be poked, prodded and programmed by strangers he is supposed to relate to and accept being handled by. This unfortunate mother, run ragged through the chaotic circus of support services, is given no time for, and little help with, getting to know her baby and becoming emotionally attached to him.
Why on earth do skilled and caring practitioners accept a mother being treated like this? Is it a lack of imagination and empathy? Is it a stubborn determination to do what practitioners are conditioned to do regardless of the damage it is causing? Of course, the mother can speak up – but not at this early stage while she is so worried about her baby and looking for all the help she can get. She will speak up later, perhaps, when she comes to acknowledge her long-term exhaustion. Meanwhile she will struggle on, a made-up smile on her face, going everywhere she is sent to do her very best for the baby.
But the infant, leading a very un-baby-like existence day after day, cannot object – at least not without being lucky enough to encounter a sensitive person who can read his signals. What he 'wants', what his whole being would ask for, is to do what babies do – get to know his mum, gaze into her face and listen to her voice, (if these skills are present) feel her touch, sleep, feed, rest and play in a rhythm that every parent recognises. Unless, of course, they are a new parent of a disabled baby, in which case they are told to expect something entirely different.
Why do we still assume in this 21st century that we can do this to these babies? What about bonding and attachment? What about his mental health? (Or do babies not have any right to mental health?) What about all he has to learn about baby things separate from disability things? One parent told me she felt it was discrimination – you can do to disabled babies what you cannot do to other babies. I did not argue with her.
My analysis is that parents who are seeking help for their baby have a strong voice (because they are the parents) in what happens and at first will put up with the very great demands made on them. Practitioners and their managers, too, have a strong voice in what happens and will offer their valuable expertise as early as they can because early intervention is, by definition, better than late intervention. The one without the voice, vulnerable and lost among our would-be child-centred services, is the infant – the focus or 'victim' of all this busy activity.
The solution, or at least the embarkation on a journey that will have no final stopping place, is to rethink in radical terms what we are doing and how we are doing it, while keeping at the top of our minds the child's wholeness, babyhood, wellbeing, happiness, freedom from pain, mental health, comfort and welfare. Then we can claim to be child-centred.
 See Limbrick-Spencer, G. (2001) The Keyworker: a practical guide, Birmingham, WordWorks in association with the Handsel Trust
 See Limbrick, P. (2011) 'TAC for the 21st Century: A unifying theory about children who have a multifaceted condition' in this publication
Please note: I have reduced complexity by describing a mother with a male baby and have created a typical situation of interventions which I am aware will not conform to everyone's experience. Though I have met rare pockets of good practice around the UK, I have not yet encountered agencies who have written policies to prevent the problems I have described.