In promoting the idea of the 'multifaceted condition' in this essay, I am going to argue against the traditional idea that an infant can have 'multiple disabilities' that must be treated by 'multiple practitioners'.
The phenomena 'pantry' and 'pastry' might help me get my point across. As words they differ in only one letter but, as elements in the kitchen, are very different in how they are composed. A pantry might store, amongst other things, sugar, fat and flour. They do not interact with each other on the shelf, you can remove any of them at will, and, if you go on a health spree, you can replace the lard with vegetable fat, the white sugar with brown and the white flour with wholemeal. They are three elements among the multiple items in the pantry.
Not so with pastry. Now the fat, flour and sugar have merged together in the mixing process and have interacted with each other in the oven. They are no longer separate entities and cannot be taken out should you change your mind about the sort of flour or sugar or fat you used. In the cooking process they have interacted with each other to produce a new entity, pastry, that has taste, texture and nutritional value that the separate ingredients did not. It is no longer meaningful to look for the flour in the pastry or even to think in terms of the flour from the pantry being inside the pastry. It is not. It has become part of something else and is no longer flour.
Before I get to the 'pastry' of the multifaceted condition, it needs to be acknowledged that a grown man or woman can have multiple disabilities just as a pantry shelf can have multiple food items. Suppose I emerge from a car accident with a damaged eye, burns, a ruptured stomach and shattered knees. I would not object to being described as having multiple disabilities and I would expect multiple medics to tend to my needs. I would not expect that the damage to my retina would have much impact on my knees and I would not demand that the burns specialist goes into conference with the gastric surgeon. I would be content for these multiple practitioners to get on with their tasks more or less separately over the coming months and years on my multiple problems.
After my imagined car accident my injuries and disabilities remain more or less separate from each other like groceries in the pantry because I completed my child development processes some time ago. But what about the infant who is deeply and perpetually involved in the process of development and learning, and in establishing the necessary new neurological connections and pathways that allow new behaviours now and yet more new learning tomorrow? Though the relevant specialists and parents might identify such separate entities as cerebral palsy, visual impairment, hearing impairment, autism, learning difficulty, etc, we should consider these items to be much more like ingredients in pastry in an oven than like groceries on a pantry shelf.
My argument is that an infant's separate conditions become cooked together into a new and unique entity in the development and learning process at the neurological level. Imagine an infant who has dual diagnoses of cerebral palsy and significant visual impairment. Her learning will be in the context of the two conditions interacting with each other, and the resulting neurological structures will be the product of those interactions.
Hand/eye co-ordination, for example, will develop very differently in a child with this dual diagnosis to a child with just one of them. While a baby with visual impairment might reach for a bauble – with increasing accuracy and reliability as neurological connections develop in response to the behaviour, the child who also has cerebral palsy has to reach out using body posture and arm and hand movement that are making her task more difficult and success harder to achieve.
We can also look at the bauble-reaching task from the point of view of the physical impairment. The child, who already has a much harder task than a typically developing infant as she attempts to get her hand to the bauble, has to struggle with imperfect vision that makes it harder to locate the bauble in space.
So it is my contention that the emerging neurological pathways for hand/eye co-ordination in this infant are the product of both conditions (and of course of such other factors as personality, motivation, attention, etc) and that the product is like pastry in that the separate ingredients can no longer be found. They have inter-acted with each other – or fused together – and brought into being a new entity which we could label 'blind cerebral palsy' or 'cerebral palsy blindness'.
We can envisage another dual disability to help promote the idea of the multifaceted condition in preference to that of multiple disability. This toddler, who has significant hearing impairment and is on the autism spectrum, is establishing new neurological pathways and connections in response to, amongst other influences, his encounters with other people. In these interactions and relationships he has to endure, enjoy, accommodate to and celebrate much the same things that other children of his age on the spectrum are also subject to – but he has to manage without hearing.
The corollary is that while he faces the challenge of learning an alternative non-hearing communication system, the outcome, in both behavioural and neurological terms, will be significantly altered by his autistic features. In his multifaceted condition of 'deaf autism' or 'autistic deafness', there is no pure deafness or pure autism to be found – there is only the fusion of the two.
We could continue the theme and look at children with three or four or more labels – and this would certainly help emphasise the uniqueness of each child with a multifaceted condition, but the space in this essay might be better used to consider how the concept of the multifaceted condition could impact on early childhood intervention, or early support, for these children and their families.
In my experience in the UK, our most common approach borrows much more from the pantry than the pastry.
We model our interventions on the treatment of the car accident victim envisaged above as though, in the developing child, the various conditions and disabilities are somehow not interacting with each other in the child's development and learning – as though the physiotherapist can promote reaching without considering the visual issues, and as though the hearing-impairment teacher can promote communication without considering the autistic features. Our knee-jerk response to the child and family's need, perhaps bowing to traditional thinking, perhaps bowing to parental pressure, perhaps bowing to managerial demands, is to treat multiple disability with multiple practitioners and separate programmes.
There is a general and growing awareness about all young children that we should treat each one as a whole child – but if this is seeping into the training of early interventionist teachers, therapists and play workers, it is doing so remarkably slowly.
With our fragmented health and education interventions it can appear that we expect the infant to do posture and motor work on Mondays, language and communication on Tuesdays, play and hand/eye co-ordination on Wednesdays, seeing and hearing on Thursdays, cognition on Fridays and then learning about bathing, dressing and mealtimes over the weekend. We know that typically-developing infants would demolish such an ill-advised approach in minutes but we expect disabled children, including those with a learning disability, to learn in self-contained segments and then (as their homework perhaps) to try to fit it all together into something which helps them function in the world as whole beings.
Following and developing a whole-child approach to development and learning, we should explore in early childhood intervention, or early support, how to meet each multifaceted condition with a multifaceted intervention system. This means acknowledging the inevitable fusion of conditions in new neural pathways and anticipating and promoting the process by fusing together our interventions.
When I talk on this subject, this is the point where some practitioners and parents anticipate my preferred approach to be either the Peto Conductor or some dumbed-down Jack-of-all-trades. Though I am a great admirer of Conductive Education I do not see UK services going in that direction. I dismiss the Jack-of-all-trades because infants with multifaceted conditions have a right to support from all the highly trained expertise we can focus on them – and this includes specialist practitioners trained in separate disciplines. I want ever more expertise available to these children and their families.
The challenge these children bring to us (and we should thank them for the wonderful development and learning opportunity) is to find ways to put our separate strands of expertise and experience together before they are delivered to the child and parent. This requires more skills and more professionalism than do separate programmes and it requires all of us to find ways of collaborating with each other – even in the absence of effective training in multi-disciplinary teamwork.
The forum for this can be the small collaborative TAC (Team Around the Child) which comprises just two or three key practitioners and parent, and the process they can employ is collective competence.
Achieving collective competence means, taking as an example the infant with blind cerebral palsy, mother, physiotherapist and visual impairment teacher coming together in regular TAC meetings to share observations, ideas and aspirations, to learn from each other and to find creative whole-child approaches to such development and learning tasks as moving around the home, playing with toys, communication and socialisation, managing clothes, etc. The reader will recognise than none of these activities are the province of any single practitioner.
It can be helpful, when planning development and learning strategies, to move away from thinking about which practitioner a child might need to which interventions the child might need – to move from, 'The child needs to see a Physiotherapist.' to 'The child needs help now in playing with toys on the floor.' This can help us keep our thinking open and multifaceted and to remember that any solution is likely to come from collective competence.
I would like to finish by looking at the same issue from another angle. When we apply the old principle of sending in a new practitioner for each need that arises, do we ever ask ourselves if this vulnerable infant is socially, emotionally and psychologically ready for a new relationship with yet another adult, to be manipulated by yet another pair of hands? If the infant is still a babe in arms, if there is a sensory deficit, if the mother and child have not yet bonded with each other, if the child has a learning difficulty, then the answer might well be 'No'. In which case the multiple practitioners might be doing more harm than good.
These infants with their multifaceted conditions politely invite us to be more creative and to find solutions that are more child-friendly for delivering our skills and experience to mother and child. TAC's multifaceted collective competence achieves that and also provides the parent with a small and trusted team for helping her think through all the difficult decisions and dilemmas that arise in families.
This essay was first published in PMLD-Link Vol 22 No 1 Issue 65 (2010)
See the companion essay by Peter Limbrick 'TAC for the 21st Century: A unifying theory about children who have a multifaceted condition.'