‘... some babies and infants ... do not fit into traditional education/school systems or traditional health/hospital systems. This is new work needing new collaborative thinking.’
Education and health are two major parts of early child and family support. A third, not discussed in this article, is family support. Clearly, education/learning, health and development are all interconnected and interdependent. The article is about babies, infants and pre-school children who have some combination of physical, sensory and intellectual impairments, with or without formal diagnoses.
I am writing from the world of education. When I use the word ‘we’ or ‘us’ I am referring to all adults around these children as parents, other family members, workers in education and health services and any others with some practical involvement. In the hope of keeping the article grounded at the grassroots, I have in mind as I write a blind baby with cerebral palsy who has some residual vision and a loving mother. My intention is to write in a form accessible to workers and family members who are not graduates.
Under this heading come helping the baby survive, keeping her as healthy as possible, keeping her as comfortable and pain free as possible, helping her thrive, dealing with medical and surgical issues, maximising nutrition, providing an environment as free as possible from toxins and radiation, bringing her up in an inclusive social environment conducive to mental health, and nurturing bonds of attachment to significant family members.
All the factors above will contribute to the child’s development. (But I feel sure the international medical world has better descriptions of 'health' for a blind baby with cerebral palsy.)
I define education or learning as the acquisition of new understandings and skills with or without adult help. The process starts before birth and continues during the rest of life. An aspiration we all share in early child and family support is for the baby to acquire new understandings and skills and to have daily natural opportunities to practice them so they can become embedded in new neurological patterns and pathways.
By ‘understandings’, I mean:
- the child’s growing comprehension of her world coming from touch, hearing, vision, taste, smell and body awareness
- a growing comprehension of self and then self esteem
- a growing comprehension of others and relationship.
By ‘skills’ I mean the growing ability to act on the world rather than being passive in it. Included in this are play, maintaining postures, mobility, dexterity, communicating, choosing, hearing, listening, a sense of joy, a sense of achievement and managing food, drinks, clothes, toileting, washing, sleep, etc.
Children around the world and in your family and mine acquire these first understandings and skills at home among their family members with familiar household items, furniture and toys. As their world expands they acquire further understandings and skills in the wider family and social networks, then in community settings for play, socialising and education. There is no reason for the acquisition of understanding and skills to come to an end in any of us.
It is my understanding that education around the babies and infants we are discussing has three layers:
- The child’s acquisition of new understandings and skills.
- Parents’ acquisition of new understanding and skills as they gradually become more competent, confident and relaxed in bringing up their new child.
- Health and education workers’ acquisition of new understandings and skills:
- as they support more children who have multifaceted conditions
- as they learn more about how to help parents acquire relevant new understanding and skills
- as they learn from each other in individualised teams around each child
My non-medical understanding of ‘development’ is the gradual maturation of a child’s physical body and brain coming as a natural part of growing up. This maturation allows the child to acquire increasingly sophisticated understandings and skills. The maturation can be slowed when the child does not have the health factors listed above. Some understandings and skills that seem to develop naturally, for example walking and talking, will need very careful support in some children and might not develop at all.
Shared language and practice
As improved international systems for early child and family support evolve, it will help if there is agreement about words and their meanings. There should be no assumption that words and concepts from either the education world or the health word can be adopted for shared use without close scrutiny. Part of the reason for this is that some babies and infants, for example the blind baby who has cerebral palsy, do not fit into traditional education/school systems or traditional health/hospital systems. This is new work needing new collaborative thinking.
As we all aspire to helping babies and infants develop and learn, we must be able to bring health workers and education workers into shared practice around those who have a multifaceted condition. This can mean workers and parents coming together in individualised teams around children (TAC). In these teams one of the first tasks is to agree which words to use and then agree what they mean.
This close teamwork can include role release in which one worker or parent hands over one or more understandings and skills to another worker or parent. Role release can happen across traditional health/education boundaries and is an effort to rationalise multiple workers and multiple programmes. Role release can find its ultimate expression in transdisciplinary teamwork for some children and families in which much of the support is provided by one worker.
Close teamwork and role release only become possible when workers respect each other and help each other acquire new understandings and skills. It is not appropriate for health workers to take on education tasks or for education workers to take on health tasks for which they are not trained or competent. The children and families we are discussing here will not be helped by lazy assumptions that we can all do a bit of everything. When we work together effectively with mutual trust and shared understanding we can achieve everything.