We can use the word ‘Zen’ in two ways. There is the Zen of the Japanese tea ceremony which can be practised by people in all walks of life. Then there is the Zen of the monk in deep meditation on the absolute.
This essay uses Zen in the first of these two meanings with characteristics that include simplicity, gentleness, harmony, reverence, humility, integrity and the taking of great care.
Zen and wholeness
In pursuit of this Zen, I am going to focus on wholeness, striving for clarity and simplicity by eliminating unnecessary complications and fragmentation. There is the wholeness of families, the wholeness of each child and the wholeness of each child’s multifaceted condition. To help each child gain new understanding and skills, there is the wholeness of early childhood intervention teams and the wholeness of their integrated approaches combining education, therapy and play. Then there is the wholeness of the child’s learning in everyday family life.
This Zen perspective on care and support for babies and pre-school children who have disabilities allows me to put intuition alongside evidence-based practice and humanity alongside science. These young children are, in the majority of situations, brought up by their parents in family homes where laboratory conditions do not apply and in which family life cannot be reduced to data. How babies and infants learn is essentially a mystery before which we should stand in awe. There are no technical manuals telling us how to help each unique disabled child learn. For these reasons, practitioners can combine best practice with humility, intuition and humanity taking what each child’s parents know and do as the starting point when a parent asks for help.
The wholeness of families
Without being sentimental or naïve about the vast range in composition, caring and competence of families around the world, we can acknowledge that most children start in some sort of family life being cared for by one or more parents. Baby and birth mother are part of a wholeness. This extends to embrace other family members within the close family. This whole family must be the concern of people who come along to help the baby or infant gain new understanding and skills. This is for three reasons:
Firstly, when a baby or infant is found to have significant disabilities that will impact on development and learning, all aspects of family life can be affected. This includes relationships, work, study, leisure, finance, housing and resilience. Families can fall apart, belief systems can change dramatically and there can be overwhelming negative emotions. Asking new parents to focus on their child’s needs for learning and development might not be realistic at first. Effective support for the family’s immediate practical and emotional needs might have to be the priority.
Secondly, support for parents as they promote their new child’s understanding and skills is best begun in the family home in the milieu of the family and its natural daily activities. All children’s first learning is in the activities of feeding, bathing, nappy/diaper changing, moving around the room, managing clothes, playing, socialising and bedtime. Some clinic sessions might be necessary but activities here are in danger of not appearing relevant to child or parents. Also, the child might feel unsafe in the clinical environment and therefore not ready to learn.
Thirdly, we must consider new children’s growing attachment to parents and other family members. Our social and emotional life as children, teenagers and adults is influenced by our early attachment or the inadequacy of it. Each new disabled child and their family members need calm, unhurried quality time with each other for bonds of attachment to grow. Practitioners who get in the way of attachment are sowing seeds of psychological ill-health for child, parents and others in the family. Two steps to promote attachment are:
- Offering timely emotional support for parents and perhaps siblings and grandparents
- Keeping appointments away from home to a minimum, reducing exposure of the new child to non-family adults with whom they are not familiar and eliminating non-essential home visits
A coherent and sensitive pattern of support will preserve everyone’s calmness, energy and patience and make space for stress-free quality time.
The whole child
Every child comes as a complete whole child. There is no such thing as ‘half a child’, ‘almost a child’ or ‘not quite a child’. This wholeness is not diminished by a child’s disabilities. Each and every child is deserving of love, care and respect. Each child has rights. This is worth emphasising because some people will describe others as something less than fully human when discriminating against them or preparing to hurt them. Disabled children and adults all around the world suffer discrimination. This influences their schooling, social activity, employment opportunities and sex life. Children who have disabilities are first exposed to prejudicial attitudes in babyhood and infancy. To counter this we must fully value each new child whatever their situation, disabilities or life expectancy.
The whole multifaceted condition
When supporting a new child’s understanding and skills, we observe that abilities and disabilities interact with each other. When a child develops intention, attention, communication and dexterity in dressing and undressing tasks, these will be of benefit at mealtimes and in play activity. Impairment in vision will affect how a child learns to move around the room. Impairment of movement will affect visual perception and sense of space. There are no separate parts in a baby or infant. Practitioners who specialise in a single aspect of child development must use their knowledge in the context of the whole child’s learning. When we simplify a child’s plural diagnoses (of perhaps sensory, physical, intellectual and behavioural challenges) to a single unique multifaceted condition, we can develop a whole approach to learning. This avoids the fragmented approach that would treat a child in bits and the multiple-practitioner approach that keeps child, parents and practitioners stressed and exhausted.
A group is different from a team. Members of a team work in relation with each other with shared trust and an agreed goal. If the people around a baby or infant who has disabilities are a disparate group then there will be fragmentation, confusion and chaos with added frustration, exhaustion and stress for child, family and practitioners. When the main people caring for and supporting the new child (practitioners and parents) come together as a team around the child (TAC) they can build a whole picture of the child and family and of the child’s abilities and needs. There can then be a unified plan of action combining what the practitioners know with what the family knows.
A whole approach
The TAC response to the child’s wholeness and to the interconnections between the child’s abilities and disabilities is to integrate education, therapy and play to help the baby or infant gain new understanding and skills. Members of a TAC gradually increase their ability to work with the whole child. Collective competence emerges with time allowing some reduction in the number of people who need to work directly with the child at any one time. The care and support becomes less complicated and more sensitive to the child and family.
The wholeness of learning in natural life
This brings us back to the family home and away from the clinic environment. Now education, therapy and play can be brought together and focused on each family’s daily activities of mealtimes, getting up and going to bed, dressing and undressing, socialising and playing. This is where most children achieve their first learning. Now child and parents can see the relevance of new understanding and skills, the child learns in natural situations, parents enhance their skills in bringing up the child and the family is strengthened. The child is just a child and not singled out as something very different. The parents are just parents without having to be therapists.
This is my account of Zen in the care and support of babies and infants who have disabilities. It brings together separate elements of established good practice into a whole approach that I have used successfully as a child and family keyworker. Keyworkers are a great asset in pursuit of wholeness. The approach I have described responds to disabled children’s need for increased sensitivity, to families’ need for respectful support as they bring up their children and to practitioners’ need for flexibility in their pressurised work schedules.