Enhancing the education component of early child and family support for children who have multiple diagnoses of disabilities
“teachers are essential members of teams around these babies and young children because they are well versed in the science of learning while other practitioners might not be”
There is international understanding that the incidence of babies and young children who have multiple diagnoses has been gradually increasing during recent years. It is not my task in this article to explore why this is happening, but two possible factors are improved survival rates and ever-increasing environmental pollution. The babies and pre-school children I have worked with have included some with cerebral palsy and associated neurological conditions, some with a genetic syndrome, some with global developmental delay, some with short or uncertain life expectancy and some who need on-going technological support for feeding, respiration or excretion. I have worked with children who have all of the above in combination. Though there are clear barriers to learning for these children, there should not be an assumption of intellectual disability. Nor should we discount these children as not deserving the best possible experience of babyhood and childhood.
Interventions for these children between birth and entry into school might be called therapy or early support or early childhood intervention. My preferred term of ‘early child and family support’ brings families firmly into the picture. Effective early child and family support has three components; health, education and family support. Health interventions are for the child’s survival, health, wellbeing and freedom from pain. Education interventions promote the child’s understanding, skills, self-esteem and autonomy. Family support helps the family survive as a unit, address practical issues arising from the child’s condition, develop resilience and enjoy the best possible quality of life.
There are only rare examples of effective early child and family support systems in my experience. It is common for health interventions to be the most developed of the three in hospital paediatric departments and in community health services. Family support varies between localities and at its minimum means that practitioners try to be kind and sympathetic to distressed parents. When it is more developed there is counselling for family members and practical help to reduce parents’ stress and strain. Education interventions also vary greatly. There might be specialist pre-school teachers for children with sensory impairment or social/communication difficulties and there might be specialist teachers in children’s centres. But it is a matter of chance with nothing guaranteed. The central theme of this article is that the children I have described deserve earlier and more consistent education intervention. I will describe how this can happen and who can be the most appropriate educators.
First learning for children who are developing typically happens informally in the family home in the everyday activities of playing, socialising, managing clothes, mealtimes, washing, toileting/changing, bath time, bedtime and moving around the house. This is more or less all that children do at home in the first year or two and this is where they develop their first understanding and skills. So education as I define it starts at the breast or bottle with relationship, gazing, touch, sense of comfort and security and continues as movement, communication, cognition, attention, intention etc. are practiced and refined during the first months and years. Understanding and skills transfer across from one natural activity to another. For instance, dexterity developed in playing with toys is important for managing clothes. Posture and balance developed in moving around the house are important at mealtimes and bath time.
The same natural activities can also be the starting point for learning in babies and young children who have multiple diagnoses. While in the countries I know of families mostly bring up their very young children without outside help or interference, new parents of children who have very special needs will almost certainly want professional help from people who know more than they do. These professionals, whether nurses, therapists, teachers or psychologists bring special knowledge and experience. But parents have their own deep knowledge and experience about their new child so the process must be a respectful parent-professional partnership. An overly expert attitude and approach risk undermining and de-skilling parents at the very time when their self-esteem and confidence might be at low ebb.
This focus on baby and infant natural activity is in my view a guiding principle in the education component of early child and family support. A second guiding principle is that parents are acknowledged as the only people with the right and responsibility to bring up their child. The responsibility of professionals around each child is to support parents in their upbringing role rather than trying to take over from them. To avoid interfering, professionals step in to help only when invited to do so and begin by listening very carefully to what parents are saying they need help with. An example of this is a parent who is concerned their child is not making progress in using a cup or a spoon. Another example are parents asking for help because they feel their child is ready to start walking but are unsure about how best to help.
Though I am using the term ‘education’ for this gradual acquisition of understanding and skills in natural activities, I am not suggesting it is or should be solely the province of teachers. But I do suggest that teachers are essential members of teams around these babies and young children because they are well versed in the science of learning while other practitioners might not be. This science is just as applicable to helping a baby learn to touch a mobile hanging over the cot as it is to helping a child at school with a reading book or a maths problem.
Which early childhood practitioners are needed to support parents with their child’s learning will depend on which natural activity is being focused on at the time. Taking for example the task of drinking from a cup, the necessary expertise lies with physiotherapists, speech and language therapists, occupational therapists, teachers and parents. Parents know their child’s tastes, attitudes, moods, games, rewards and changing responses at different parts of the day. Specialist teachers know about working with children who have visual or hearing impairment or who are blind or deaf. Occupational therapists know about use of hands, special seating and types of cup. Speech and language therapists know about the language of cups and drinking, about offering choices and about skills in sipping and swallowing. Physiotherapists know about breathing, posture and balance, about head control and reaching skills. None of these divisions have firm boundaries in my experience.
I am not suggesting surrounding the child at home with all of these practitioners at each mealtime. But designing an effective plan for supporting parents in teaching their child to manage drinking from a cup at tray or table requires a degree of involvement from all of these practitioners to closely observe the child’s present skills and agree a plan of action. Then one of these practitioners learns from the others to become competent in working with the parent and child on this multifaceted task. This transdisciplinary teamwork is necessary when a baby or young child has multiple diagnoses of disabilities that impinge on learning.
We can see from this example that there is a mix of all three components of early child and family support. Education is the focus to help the child acquire new understanding and skills in drinking from a cup. The speech and language therapist will consider the child’s ability to swallow without liquid entering the lungs and endangering health. The whole effort is supporting parents’ role in bringing up their child and adding yet another positive strand to family life and wellbeing.
The forum for this transdisciplinary teamwork is the child’s Team Around the Child or ‘TAC’ which brings the parents together in face-to-face meetings with the two or three most closely involved practitioners. Each TAC functions horizontally with a flat power structure. For reasons stated above, each TAC should have one or more teachers. In very many cases this does not happen.
To summarise so far: the education component of effective early child and family support focuses on natural daily activity of babies and infants in an effort to help parents bring up their child. Parents and practitioners work in partnership and they come together in regular TAC meetings to share observations and agree a unified plan of action. One TAC member acts as the primary interventionist for a period of time while other stay in the background working indirectly.
With these children, because of the number of practitioners involved, there is always the danger of a fragmented and piecemeal approach to development and learning. To avoid this, the TAC approach to early child and family support deals with wholes and follows systems theory in understanding that wholes are always more than the sum of their parts. This TAC thinking is as follows:
The child is never thought of as separate from the family. Child, parents, siblings and grandparents are considered as an entity and all are deserving of consideration. Each child, no matter how many diagnoses there are, is considered as a whole child enjoying the same rights as other children. No child functions in separate parts. Each baby or infant activity involves movement, posture, communication, relationship, dexterity, vision, hearing, memory, emotions, attention, intention, etc. This is whole-child activity. Practitioners who specialise in one area of child development, for example movement or communication, need the additional skill of always applying their specialist knowledge in the context of the interconnected whole child.
To take this philosophy of wholeness further, in the context of a baby or infant’s learning, diagnosed disabilities connect with each other. Difficulties in vision or blindness will impact on hand-eye co-ordination and on movement around the house. Developing relationships is doubly impeded when a child has hearing impairment combined with social/communication difficulties. If we then imagine a child with all of those combined with intellectual disability, we can see that treating each diagnosed disability separately is not going to get us very far, though this is often the approach of traditional health services to early child and family support. A more realistic and effective educational approach is to consider separate diagnoses interconnecting with each other as, for each child, a unique multifaceted condition. It is this multifaceted condition that is then addressed as a whole.
This whole systems approach to the education component of early child and family support is completed when separate practitioners join their separate knowledge, experience and skills together instead of working separately with each child. This transdisciplinary teamwork is the logical professional response to each young child’s unique multifaceted condition.
Though young children who survive will almost certainly find their place eventually as valued members of their family and of their nursery or school, the time of their birth or later when disabilities were diagnosed, might well have heralded weeks, months or first years of family upset, anxiety and confusion. There can be grieving for the perfect baby who did not arrive. Families can fall apart when differing attitudes and responses to disabilities emerge. Family problems are added to when practitioners choose to work separately from each other keeping child and parents stressed and exhausted with repeated clinics, assessments, treatment sessions, reviews, case conferences, etc.
The educational component of early child and family support that I have described is respectful of children and their families. Practitioners offer help to parents without being overbearing or interfering. Parents’ role in bringing up their child is acknowledged and supported. The number of practitioners offering direct support is kept to a minimum. The child is helped to learn and develop in natural activities that are enjoyable and relevant and that add to a positive experience of babyhood and childhood. As parents learn essential skills in helping their child they become competent and confident. The family’s quality of life in enhanced, they become a stronger unit and acquire some resilience to help them with future challenges.
These themes are explored in:
Bringing up babies and young children who have very special needs: A 21st century guide for parents, students and new practitioners by Peter Limbrick (2019)
Horizontal teamwork in a vertical world: Exploring interagency collaboration and people empowerment by Peter Limbrick (2012)