In this eight-part essay I want to explore positive and favourable environments for providing early child and family support when babies and young children have conditions that potentially reduce their capacity for development and learning. I will argue that opportunities for inclusion in local education facilities should be maximised and visits to hospitals reduced to a minimum – all depending on local resources.
Part 1: Hospitals are often neurotic environments and are therefore not appropriate bases for early child and family support
To begin, The Chambers Dictionary defines neurosis as follows: ‘originally nervous activity distinguished from or associated with mental activity; functional derangement resulting from a disordered nervous system, especially without lesion of parts; mental disturbance characterised by a state of unconscious conflict, usually accompanied by anxiety and obsessional fears; loosely, obsession.’
In describing hospitals as neurotic environments I am also including such other health service settings as clinics and therapy centres. I am not suggesting though that the people who work in these places are neurotic. They might be, as might be people who work in nurseries, schools and colleges. It is only the environment I want to characterise here as neurotic.
But people are influenced by their environment and a neurotic environment will certainly influence people who work in it. It will also influence adults and children who attend as patients or outpatients, more so if regular visits are required. In the UK many general hospitals have various departments helping children including those housing paediatricians, neurologists and paediatric therapists. It is to these hospital departments that families whose baby or infant has particular challenges might have to come regularly for help and support.
The hospital will serve as a prime example of a potentially neurotic health service environment. This is where doctors, nurses, therapists and others receive much of their initial training and first experiences so perhaps this is where any neurotic tone is set. That hospitals can be characterised as neurotic environments, I justify by the following reasoning.
- For staff members, there are the stresses and strains that come with being responsible for people who are ill, perhaps in pain and perhaps in danger of dying. There is the need for constant vigilance to make sure everything that needs to be done is being done at the right time and in the right way. There are codes of practice to be followed diligently and reports to be updated. This must feel like continual pressure. Some staff members will succumb to burnout. The daily situation is surely exacerbated when a patient dies.
- Hospitals have many vertical hierarchies in which staff members are required to know their place within layers of management. For example, while running tests, performing operations or giving medications doctors, nurses and therapists are monitored by their managers at the same time as monitoring others they are responsible for. Vertical hierarchies naturally bring various emotions and efforts accompanying ambitions to rise and fears of losing position.
- Hospitals bring many trades and professions into a collective effort. There are workers in administration, complaints, mortuary, cleaning, catering, maintenance, transport and parking. There are doctors, nurses, surgeons, auxiliaries, therapists, neurologists, psychologists, psychiatrists, dieticians, radiologists, social workers, counsellors and others. Frequently many of these can be involved with the same patient. While teamwork might at times be trouble-free and harmonious, it can too frequently be stressful as workers feel they must struggle for recognition of their role and for the time and space to do their work in the manner for which they are trained. While there are clear hierarchies in each person’s vertical management structure, there are also hierarchies of authority and importance across the departments and disciplines. This can be a hospital-wide pyramid of prestige with the few most-expensively trained people at the top and the very many easily-replaced people at the bottom. There is much scope here for researchers interested in ego, self-esteem, power, superiority, humility, pride, rivalry, intrigue and professional identity. Physical, professional, social and psychological barriers can all impede the collective effort and here lies another source of competition, stress and strains.
- There are many other influences and potential stressors both internal and external to the hospital workplace. There are professional bodies and unions jostling to influence working practices and conditions for their members. There are governments and health authorities setting rules and standards ̶ and sometimes changing them at too fast a rate for hospital to keep up. Lawyers and courts of law can become involved when disputes about treatment plans are disputed and when patients or their families sue for compensation when errors are made. A local police force can move into a hospital to investigate abuse or deaths of individual patients or groups of patients. Staff members can be arrested tried and imprisoned reminding us that hospitals do not operate outside of or separate from society.
- This brings me to another major source of stress, the general public. Hospitals are where people go for tests, operations and medications and each patient might be accompanied by family and friends. The hospital is the interface between the medical profession and the local population with the result that much of what goes on is in public view. In fact there have been recent cases of serious abuse in hospitals being brought to light by family members and friends while hospital managers were choosing to look the other way. In the day-to-day (and night) running of hospitals, family members and friends of patients will seek out staff members to voice their satisfactions, gratitude, doubts, frustrations, anxiety, anger and even violent intentions.
- Reinforcing all that I have said so far, there is general public awareness, often promoted by medical professionals, that hospitals can be unhappy places to work in. I have already mentioned professional burnout. Frequent surveys report that significant proportions of doctors and nurses are succumbing to pressures by considering leaving their profession or taking early retirement. Then there are reports of alcohol and drug addiction at worrying levels.
- Hospitals can be enveloped in a morbid atmosphere. The Chambers Dictionary defines morbid: ‘inclined to dwell on unwholesome or horrible thoughts; unwholesome; relating to, or of the nature of, disease; sickly.’ Patients and visitors will hear the frequent sirens of ambulances arriving, will see supine patients being trolleyed along corridors, will move aside as medics rush past responding to emergency calls and on the wards will be aware of patients who have recently died. All of this is inevitable in a busy general hospital but adds to a neurotic atmosphere characterised by anxiety and fear.
- General hospitals are not designed to be healing environments. I am defining a healing environment as a nurturing space that offers mental and physical health benefits to the people in it whether as patients, clients, students or visitors. Its healing characteristics include positivity, tranquillity, unhurriedness, humanity and respect. These benefits are available as the background to any specific approaches on offer. Whatever the focus, whether rehabilitation, convalescence, bereavement counselling, personal growth or something else, if the space is not also a healing environment for the people who work in it, then there is some hypocrisy and subterfuge somewhere. By definition, a genuine healing environment would not be neurotic or morbid. There is no pretence that typical general hospitals are designed as healing environments.
By my thinking, general hospitals I have experience of offer a rich daily mix of potential stressors with various degrees of mental disturbance, conflict, anxiety and fears. Staff members, patients (adults and children), and the families and friends of patients are all influenced by this environment – in my terms a neurotic environment. No wonder they are such rich locations for soap operas in many countries! Staff members who arrive at work with a calm mind must have their work cut out to maintain it to the end of the shift while those who take home anxiety about their work and even lose sleep over it will probably not find solace in this workplace.
The aim of the first part of this essay is to show that when we create a building called a hospital to perform various medical functions, we also create an environment that impinges on the people in it. I am not arguing here to transform hospitals, or even to convert them into healing environments. I am merely questioning whether hospitals are suitable environments for early child and family support. I am going to suggest in this serialised essay they are not, that their neurotic environments are not conducive to learning in babies and young children.
Part 2: Favourable environments for education and learning
In the first part of this serialised essay I suggested hospital and clinics are not favourable environments to promote education/learning in babies and young children who have conditions that affect their development and learning in the long term. I characterised these medical environments as busy, neurotic and morbid and set them in contrast to places where, typically, babies and children can be relaxed, inquisitive, respected, secure and ready for learning. In this analysis, early child and family support (‘early childhood intervention’ to use a harsher term) cannot be effective for these children and families in hospital and clinical settings. So what are the characteristics of a favourable environment?
The Chambers Dictionary tells us that to educate is ‘to bring up and instruct; to provide school instruction for; to teach; to train.’ and to learn is ‘to be informed; to get to know; to gain knowledge, skill or ability in.’
Education and learning go hand in hand. Learning, the acquisition of new understanding and skills, is a life-long process starting at birth and, before that, in utero. Learning can come about naturally or be the result of some sort of education. In early child and family support we often pair the terms ‘development’ and ‘learning’. Development too can happen naturally or be the outcome of some sort of informal or formal programmes. In my experience learning and development are an essential mystery with some unfathomable combination of naturalness, support and other factors. A favourable space or environment is a major factor.
Some early education and learning is on the parent’s lap. We can observe the cocoon of private space that fosters bonds of attachment with physical contact, gazing, rocking and vocalizing ̶ all unhurried, gentle, calm and reassuring. This enclosed favourable environment can be created by baby and parent even in busy places. When parent and child for whatever reason do not have these quality times for learning about each other, development and learning are curtailed with long-term consequences for the child, the family and, perhaps, society. (I will suggest that a neurotic parent might find it harder to create these quality times and that this can be the result in part of a neurotic hospital environment.)
As the baby grows, family life provides a mix of learning experiences ̶ some with high activity, noise and excitement focused on doing and others that are more deliberately educational at a slower pace. These first educational times can be characterised by having a quiet, calm and safe space with an interested adult or older sibling in responsive relationship.
I will use the school classroom to typify a favourable learning environment for older children and will set this within a more or less ordered and civilised society where there is a level of mutual respect between teachers and children, together with a generalised respect for education and learning.
Ideally the classroom is a space just for teacher and pupils. Here children can focus, concentrate, absorb information, reflect, create and acquire new skills. Staying with the ideal, teacher and pupils relate to each other with calmness, attentiveness and respect. School management and teachers will try to preserve this space by reducing as much as possible all ‘noise’ coming in from the outside and discouraging or prohibiting visitors into the classroom during lesson time.
I have described the hospital environment as neurotic with contributory factors that include competition and intrigue amongst staff members in highly pressurised working conditions. I would not pretend that schools and colleges are free of all of this or that staff members are not subject to pressures from within the school and from authorities outside the school, but competent teachers know how to leave all of those concerns outside the classroom in order to preserve an environment conducive to learning. Competent school managers and external inspection regimes will strive to maintain this essential standard of the calm classroom.
An alternative to the classroom is the tutorial space for an individual pupil or student or for a small group. This can be in a school, college or private home. As with the teacher in the classroom, the tutor will try to organise a quiet space free from interruption where tutor and learners can focus on the subject matter. This will be a safe space for respectful and attentive dialogue.
Inevitably, various negative mental states are present in all these educational/learning environments in both children and adults. These can include fear, anxiety, self-doubt and conflict. These mental states in children are monitored, managed and reduced as much as possible in an effective education environment while in hospitals they probably are not.
So how does my contrast between busy, neurotic and morbid environments and those conducive to education and learning relate to work with babies and infants who have atypical or delayed development?
Effective early child and family support has the three essential pillars of health, family support and education. Health interventions, in my thinking, are best reserved for necessary responses to threats to life and illness with a focus on diagnosis, treatment and cure. Family support will almost certainly be required from the time a particular condition is suspected or confirmed and aims to preserve the wellbeing of the whole family. Elements within this are empowerment of parents and strengthening the family for future challenges.
Much of the work in early child and family support is focused on education, learning and development in the baby or infant and this is best considered as external support for the process of growing up. This support encompasses posture, movement, communication, dexterity, cognition, self-esteem, etc. and can last through babyhood and infancy up to school entry. Much of it is the province of paediatric therapists and in many countries will require frequent regular visits to a hospital, clinic or therapy centre. These are health environments in which medical thinking dominates.
In my analysis, these environments are potentially neurotic and morbid with multiple stressors including mental disturbance, anxiety and fear. Babies and infants will surely respond to this environment as they perceive it themselves and will also pick up on whatever negative feelings their parents have about being in the medical environment.
We have to consider that for some babies and young children, hospital and clinic visits evoke the same negative feelings as many of us have in the dentist’s chair.
Parents carry the responsibility to bring up their child. This means that people who come along to help the child’s development and learning must support the parental role rather than taking over. The work then is to help parents acquire new understanding and skills so they can be the educators of their new child. This help is sensitively and respectfully offered as soon as parents ask for it – not before.
Parents and other carers who are being helped to acquire the new understanding and skills that they need to bring up their babies and infants will need a space conducive to this education/learning, just as children do. Parents whose blood pressure mounts on entering a hospital or clinic, those afraid of people in white coats, those being reminded of the trauma of their child’s health emergencies at birth or since will not have the calm mind and self-assurance necessary for learning. Much of the detail they need to quickly absorb about helping their child’s movement, communication, comprehension, etc. will be missed or soon forgotten and the session will be largely a waste of everyone’ time.
I am sure I am guilty of some generalisations and stereotyping in this analysis, but in spite of that I hope I have established a valid contrast between health service environments and education environments and built the basis of an argument that early child and family support is not well-placed in hospitals and clinics. At least, I hope I have also offered some sort of rough framework for managers, practitioners and parents to use as a tool in considering the suitability of the environment they provide, work in or visit for early child and family support.
Part 3: Implications for early child and family support that is hospital-based
In this third part I want to suggest some moves from the health atmosphere and mind-set towards the education mind-set that can enhance the education element of early child and family support. When an early child and family support service is based in a hospital, it is unlikely it can be quickly and easily moved out to an educational setting, though this would be the ideal in the long term and for services being newly established.
Possible short-term approaches and remedies include:
- Redesigning the space so it is less clinical, less busy, less neurotic and less morbid. This could be a co-production effort involving parents and older children in discussions and planning
- Health practitioners meeting infants and families as much as possible in education settings (for example, nurseries and children’s centres)
- Health practitioners meeting infants and families in their own homes.
- Health practitioners changing a health mind-set to an education mind-set when they are helping children learn.
For the sake of the child’s learning, the work of the health practitioners in the first three of these bullets will be enhanced if the practitioners can adopt, to some extent, an education mind-set. This, the last bullet, is the main focus for this essay. Health practitioners who have had opportunities to study the science of how babies and young children learn will have a distinct advantage.
To recap, I am defining education as the acquisition of new understanding and skills. With respect to babies and infants who have particular challenges, in this definition I am joining together education, development and learning and including all aspects of early child development. Parents too must acquire new understanding and skills so they can bring up their child. Some of this education can come from the child’s practitioners.
There follows a list of twelve elements that can be part of changing a health atmosphere and mind-set to an education mind-set. I offer these with some nervousness as an educationalist because I know some health practitioners have got here before me and could add items to my list.
My list of remedies:
- The child is not perceived in negative terms about ‘disability’ – about the things the child cannot do and might never be able to do. Practitioners help parents, when necessary, to move away from such a negative view.
- The focus is on the child and not on the syndrome or condition.
- The session with the child is not to offer treatment but to help her or him acquire new understanding and skills. The session should also help parents acquire new understanding and skills for their task of bringing up their child.
- Work should not begin in any session until the practitioner has appraised the emotional states of the child, of the parent and of herself or himself. Is the child in a positive, neutral or negative state? Is there fear or anxiety? Is the parent tense, nervous, angry, calm, relaxed? Is the parent present or distracted? Is the practitioner present, distracted, calm, disturbed, in listening mode, in expert mode (see below)?
- Supporting the child does not have to wait for results of tests and assessment. Even on first meeting it is possible to offers some meaningful activity to the child and some new understanding and skills for the parent. This is modified and enhanced according to child and parent responses.
- The practitioner does not come to the child and family as an expert. Practitioners might have valued health-treatment expertise for some illness and injuries, but they do not have expertise in how to help this particular baby or infant acquire new understanding and skills in all aspects of child development during babyhood and the pre-school years.
- Replacing the word ‘expertise’ with ‘competence’, health practitioners will acquire collective competence as they collaborate with the other people around the child. This happens in multidisciplinary teamwork and in equal partnership with parents.
- Ideally, for each session, the working unit is child + parent + practitioner. Each of the three brings their present understanding and skills to the task and each of the three acquires new understanding and skills in the process.
- The focus in each session must expand beyond any single aspect of child development to the whole interconnected child and to the child in relationship with the other members of the family.
- The activity in each session can begin with what the child is showing interest in. Babies and infants show us what they are ready to learn if we have the time to tune in to what they are ‘saying’.
- Some sessions can be guided by parent’s concerns or expressed learning needs.
- Sessions can focus on the new understanding and skills in natural activities. Included here are moving around the house, taking clothes off or putting them on, managing cup and spoon, washing, tidying up, asking for things, answering questions, learning the names of things, making choices, enjoying rhymes and songs, anticipating, remembering, concentrating, etc. All of these can start at very basic levels during babyhood.
Returning to my theme, I accept that hospitals and clinics have atmospheres, attitudes and environments that are entirely appropriate for treating illnesses, disease and injuries in children and adults. Within them are health practitioners who have all necessary competencies to play their part in diagnosis, treatment and care. My essay is not intended to detract from any of this in any way. My argument is that babies and young children who have particular challenges do not need, for their development and learning, the treatment regimes that medical establishment are geared up for. They need education at home or in an education setting and this is where early child and family support should be based.
In this argument, helping a child acquire new undestanding and slills in posture, mobility, communication, dexterity, cognition, etc. can be seen as an education issue rather than just a health issue and should be supported by practitioners who are trained in the science of how babies and young children learn. There might also, of course, be health issues needing medical treatment. This view of early child and family support has implications for paediatricians and paediatric therapist and these will be explored in the fourth part of this serialised essay.
If general hospitals can have a busy and neurotic environment and atmosphere, so too can some family homes with (referring back to the Chambers definition) ‘mental disturbance characterised by a state of unconscious conflict, usually accompanied by anxiety and obsessional fears’. Reasons for this include the fiollowing:
- Each family has a way of being before a new child comes along. If this is of a neurotic nature, it might well persist.
- Families discovering that their new child has significant challenges might suffer mental disturbance that some families and professionals describe as trauma. This can change the atmosphere in the family home.
- Some parents can take to heart the perceived message from their hospital that their child has a list of present and future problems that will impinge on health, well-being and even survival. This can create an atmosphere at home in which the new child is more of a patient than a child and the parental role must be largely a nursing one.
In this third situation, there might be an assumption that the child cannot play. The home will have more sadness than joy. It might not occur to these parents that the child can learn new things, with the result that no play or educational opportunities are provided. This atmosphere disempowers parents and child with long-term consequences.
Early child and family support practitioners who perceive this family situation should take it as the priority issue to address, trying to turn negatives into positives, helping the parents see their child from a less medical viewpoint and elevating the baby or infant’s self-esteem and interest in life. This will strengthen the family.
Part 4: A personal perspective on collaboration between health and education workers
In this fourth part I am offering some personal biography to show how my ideas began to develop. I hope it is not self-indulgent. I would not be writing this essay if I did not have strong views on these issues so perhaps it is appropriate now to show how these views began to develop in my working life. For this I need to go back to the early 1980s in a special school in the UK’s West Midlands. I had recently moved from a London-based campaign to get people out of institutions and had a space to fill while deciding on a career direction. When I applied to the local education department for a temporary teaching post they sent me to a special school for children with health conditions and physical disabilities on the basis that I had a qualification in special education. The job was for a second teacher in the nursery.
Some history of education in England will help. Prior to 1970 children with significant intellectual difficulties were labelled ‘mentally handicapped’ or something worse and deemed ineducable. Instead of going to school, they were ‘trained’ in training centres run by local health services. This harsh attitude gradually changed and government legislation afforded them the right to go to school where they would be taught by qualified teachers. Following this, the recommendations of the important Warnock Report (1976) were enshrined in law in 1981 saying that children with special education needs should, whenever possible, be included in mainstream schools. Different sorts of special schools would cater for children with long-term complex and multiple disabilities. Included in these were special schools for children with ‘moderate’, ‘severe’ or ‘profound’ learning disabilities (crude labels I have never come to terms with).
This PH (physical handicap) school to which I was directed catered for children up to school-leaving age whose intelligence was ‘in the normal range’. The population of children included those with heart conditions, respiratory problems, muscular dystrophy, metabolic disorders, birth defects caused by thalidomide, etc. They were a mixed bunch in a very happy and settled school with teachers who, as far as I could see, did not impose ceilings on any child’s progress.
The school belonged to the local education authority and was a relatively new building with plenty of light and space. Class sizes were limited to 12 – 15 children with one teacher per class. There was a nursing team and a therapy team but no psychologist, social worker or home-liaison worker. Children were removed from their classroom for therapy and medical attention in another part of the school.
The situation I found in the nursery was of two groups of young children. The larger and well-established group were typical of the rest of the school population. A smaller group, entering the school quite recently in post-Warnock conditions, might otherwise have been admitted into schools for children with learning disabilities. Perhaps someone had raised questions about the intellectual capacity of these children and so they had been given the benefit of the doubt and sent to this PH school. They certainly had physical conditions including cerebral palsy, known genetic syndromes and other conditions with no label. I am sure these children, because of their levels of general functioning, would have been deemed ineducable in the recent past. Each of these children had what I now term a multifaceted condition. I learned in time that none of these children had been offered any effective early child and family support.
Nursery staffing comprised a teacher (two after I arrived), two NNEB (National Nursery Examination Board) nursery nurses and two bathroom assistants. It was a remarkably harmonious team under the inspired leadership of the first teacher. One nursery nurse felt that the new children were not appropriate admissions while the other was warm and accepting.
There was no established curriculum for this new intake and teacher and nursery nurses by their own admission were out of their depth. These children arrived by taxi or school bus, were carried in by their escort and laid on bean bags because there was no nursery equipment for them. They were much more ‘patients’ than pupils. They soon came under my wing as the new teacher with valid experience. This temporary post stretched into months and then years and I was able to achieve the following (briefly explained) by working collaboratively with the other nursery staff, nurses, therapists and parents:
- The children stopped being ‘patients’. They were increasingly involved in games, social activity and learning, their personalities were recognised, hidden potentials came to light.
- Each child was equipped, when ready, with a tailor-made nursery chair so they could sit to a table. (With the voluntary input of an unemployed carpenter.) Once a child was promoted from bean bag to chair and table they were seen in a new light. Now they could be with the other children for snacks, mealtimes and going-home songs.
- The main body of children had a morning story-time as a group. The new group had so far stayed on their bean bags for this on the periphery. With help I made a group of these new children in a corner of the nursery with each in some sort of propped sitting position from which, if they raised their heads, they could see me and the others in the small group. It usually took about 40 – 50 minutes to get this group assembled in comfortable postures after drink and bathroom attention. The activities included responding to their name, smiling, looking at me, looking at another named child, moving hands, handling a teddy or toy, listening for their name in a song, expressing some sort of ‘yes’ and ‘no’, making simple choices and so on.
- I worked/played with each child individually or in pairs at other times of the day. I spent a lot of time on the floor with the children to the surprise of other staff members.
- As each child showed new understanding and skills, their parents were invited in so they could see what their child was doing and for an exchange of observations and information – the start of a home-school relationship.
- In most cases this opened the way for me to visit the child at home. This was always a rich and rewarding experience.
The main point in all of this is that as a teacher I could not on my own create good positions for drinking, eating, listening, use of hands and for hand-eye coordination. Also, I could not create activities to promote head control (prone or sitting), moving on the floor (rolling, creeping), alternative communication including a form of ‘yes’ and ‘no’, making choices, etc. All of this required collaboration with therapists and, when necessary, nurses ̶ as did the design of chairs and other ‘home-made’ postural aids. An early part of my work was to build trusting relationships with these colleagues and to bring them into nursery activity instead of them seeing children in their clinical rooms. It is fair to say that these new children were largely an unknown quantity to the nurses and therapists so we were all learning together, with me supplying the education impetus to lift the children out of ‘patient’ mode.
Readers who know my work will see that the Team Around the Child approach was evolving here as was my deep respect for health professionals and the need for respectful collaboration in horizontal teamwork. I also learned good lessons here about the value of home visits and the need to respect parents and keep them fully informed and involved.
The principles I established for myself then and which have informed my later work include:
- Seeing a child as a patient at home or in school and treating them as such is not conducive to development and learning.
- No single person is competent to offer a whole approach to a child who has a multifaceted condition.
- Collaboration is essential between educators, health workers, parents and others as necessary.
- Each person’s skills are to be respected. Collective competence is created when they are all joined together around each individual child.
- Teachers cannot function with these children without this teamwork. Collective competence must address play, learning, posture, communication, cognition, dexterity, eating, drinking, sleep, nutrition, oral hygiene, constipation....
- When, using collective competence, a child is being encouraged, for example, to move on the floor to reach a toy, it is impossible to say what part of the activity is play, what part is therapy and what part is education. The activity transcends these labels.
- With these children, all firm boundaries are dissolved between education and health, between teachers and health workers.
As I have said, in England children with intellectual difficulties were not offered education before 1970 and were catered for by health workers. Even in a school setting I had to strive to get staff to stop seeing some children as ‘patients’. The theme of this serialised essay is that we should also elevate babies and preschool children out of ‘patient’ mode, changing our mind-sets so we see them as leaning children and ourselves as educators. A major part of this is to avoid offering early child and family support in hospitals and clinics.
Part 5: Early child and family support is often wrongly treated as a health issue
Having started my thinking that hospitals are not fit environments for early child and family support, I have come to question why this essential support is so often treated as a health issue. It seems to have come about during the last seventy years or so without any conscious thought – but with an inarguable intent to help children. In this part of my serialised essay I want to suggest:
- An inappropriate situation persists by default in which babies and children remain as hospital patients long after it is necessary. I will list some of the problems this causes.
- There is widespread harmful confusion about the therapy the children receive on their visits to hospital clinics and departments. I will question the validity of the word ‘therapy’.
The default position
Babies and young children who once needed medical attention remain as patients with regular visits to hospital for months and years when it is not justified. This feels like a default position that occurs because no one asks ‘Does this child really need to keep coming back to the hospital?’ or ‘Should this child move now from health provision to education provision for their on-going early child and family support?’
The problems that can arise from this default position include:
- Child and parents are subject on a regular basis to the busy, neurotic and morbid hospital environment. This is likely to create negative mind-sets in child and parents.
- The tag ‘patient’ remains attached long after it is appropriate. This has a psychological impact on child and family which might also create negative attitudes at home and even depress expectations.
- Quality of life is spoiled with frequent trips to hospital that interrupt normal child and family routines, cost money, require sometimes difficult journeys and sap energy and spirit.
- Parents might harbour the idea the child is going for curative treatments.
- Regular hospital visits are usually for therapy. Therapists are busy people and will give each child a time slot. There cannot be flexibility here to properly accommodate the child’s sleep/eating/drinking routine, to respond to the child’s mood or to give parents the time they might need to fully understand what they are being told and to absorb the approach the therapist is using.
- Busy therapists with too-large caseloads will rely on parents learning procedures they can practice with the child at home. In my experience this is extremely problematic and requires much more careful time and attention than is usually available. (Some parents have found this works best when they do not take the child with them!)
- Almost inevitably, the relationship is ‘expert’ to ‘non-expert’ and will undermine some parents no matter how kind the therapists are.
- Therapists rarely have whole-child concerns because they have specialist knowledge about a single aspect of child development. When the child is being helped by a number of health workers for posture, movement, communication, hearing, vision...it is left to the parent (and the child) to try to join it all together into a coherent whole.
Confusion about the word ‘therapy’.
The three pillars of early child and family support as I have described them (health, education, family support) do not include the word therapy. Yet, I have shown in Part 4 of this essay my high regard for paediatric therapists I have worked with. How can this be?
There is another easy default position here that we have slipped into in recent decades. We have known for a long time that therapists in hospitals can help children and adults with various medical conditions (for instance with muscles, respiration, speech). From this we have made the very wrong assumption that babies and infants who have ‘disabilities’, ‘delayed development’ and other conditions that impact on development and learning need regular and long-term exposure to therapy.
In my experience, paediatric therapists offer the children in our focus two sorts of help:
- The first is medical – offering skilled, practical and relevant treatment for a child’s health needs to do with muscles, joints, breathing, swallowing, etc.
- The second is educational – helping a child learn to roll, sit, stand, communicate, name objects, make choices, etc.
In this there is no third category called ‘therapy’. Thinking our children need regular therapy is confused and confusing. It keeps children trapped in medical fetters, keeps them labelled as ‘patients’ as though they were ill. By the logic of this serialised essay, the educational part of the therapist’s role is best delivered in an educational setting in collective competence with a teacher or another who is trained in education.
Helping a child develop and learn and supporting parents in how to help their child develop and learn is an educational pursuit. It is best offered, depending on the age of the baby or infant, at home or in a nursery or other educational setting. With this thinking, and being aware of the downsides of hospital environments, it becomes an imperative to keep children away from hospitals – unless they have an illness that requires treatment. The conditions in babies and infants that have been labelled as ‘disability’ or ‘developmental delay’ are not illnesses.
Part 6: Contrasting a therapy approach with an educational approach to the early skill of moving on the floor
At the end of Part 5 of this serialised essay I promised in the next part to contrast a therapy approach with an educational approach to the early skill of moving on the floor. My reason for this very practical focus is that ideas and theories in early child and family support must be shown to be directly relevant and applicable to children and parents, otherwise they remain as only ‘academic’ arguments. If I am suggesting changes from a health environment and approach towards an educational environment and approach then I am obliged to describe changes in how children are supported and to show how they will benefit.
In this exercise I am creating situations based on practical experience. While I put the two approaches at the opposite ends of a spectrum, I am aware of all the good work that goes on in the middle. The exercise will help get my argument across about the need for change and it might also be a measuring rod for parents and practitioners to position their child or their work on the spectrum.
A therapy approach to the early skill of moving on the floor
For this, we are a fly on the wall observing a single session in a hospital’s paediatric physiotherapy department or clinic. A baby boy or infant is supine on a therapy mat with a physiotherapist kneeling at his side and the parent nearby but not too close.
The therapist knows the child well. He has significant motor issues with a neurological cause. She had carried out an assessment schedule before attending a multidisciplinary assessment meeting to compare notes with other practitioners and agree a plan for the child’s future treatment. This plan had included regular physiotherapy sessions in the hospital with some home visits if possible.
The therapist is working on the new skill of rolling from supine. Her work to date has shown that the child is developmentally ready for this and she has told the parent what the new task is. She will help the child roll from back to side and observe how he responds. From this she will know how to proceed. She manages the child with kindness.
One approach she uses is to turn the child’s head to one side and to hold it with one hand. She uses the other to press at a particular point on the child’s torso. The child’s knees come up and he rolls to the side. In another approach she initiates rolling by bringing one leg up and over the other which is held straight. She began the session with some relaxation exercises and was careful to practice rolling to both sides from supine. The parent is pleased to see some progress. The child has not been entirely happy with the explorations and has shed a few tears. At some point, in this session or a later one, the therapist will suggest how this new rolling skill could be practised at home.
In very vague terms I have described work that requires deep knowledge of motor development, of infant reflexes and of dangers to be avoided. I hope no one uses my crude outline (written by a teacher and not by a therapist) as a guide to action.
An education approach to the early skill of moving on the floor
We are a fly on the wall now in part of a children’s centre or nursery with one or two staff members and a few babies and infants. Staff members are teachers, early years’ educators or nursery nurses and all referred to here as ‘teachers’. The child we are focusing on has the same motor issues as the child with the physiotherapist above.
One teacher is observing the baby or infant who is lying on his back not doing anything particular. She kneels at his side, talks to him very gently and holds a toy above him. It is a toy she knows he has responded to before so she talks to him about it and jiggles it so it makes its noise. She might even have a familiar song to go with this toy. Seeing that she has got his attention, she slowly puts the toy on the mat to his side. The child shows he is excited now and seems to be trying to turn his head to see where the toy has gone. Still talking or singing to him, she helps him roll with gentle pressure at his shoulder or hip. Once on his side he looks at the toy and she helps him touch it with the hand that is free (i.e. not down on the mat). There is much praise and excitement. She returns him to his back and then plays the same game going to the other side. Quite soon, they both decide the game is over and she changes the activity to something less demanding. When she gets an opportunity she will show the child’s parent what they were doing because rolling to the side is something new which he might do again at home. This staff member makes a note of the child’s response intending to discuss it with colleagues. She wonders if she was helping him in the right way.
Now that I have used two imagined scenes based in my own experience placed at opposite ends of a spectrum, many readers will jump to the same conclusion as me that it would be ideal for the two practitioners to join their knowledge, skills and experience in a joint effort of collective competence (and including the parent who knows so much more about the child). Staying with the ideal, this should happen in an education setting to avoid as much as possible the busy, neurotic and morbid mind-sets and atmospheres in general hospitals. The physiotherapist’s support would be intermittent.
To reinforce my argument, I will compare and contrast the two approaches. The child in the hospital session will be Child A and the child in the education setting will be Child B. There is no reason why they cannot be the same child. For simplicity, practitioners are female and children are male.
- Both practitioners are motivated to help the child and both are bringing their care and skills to the child. Both will share all or some of these skills with the parent so the parent is better equipped to bring up their child.
- Child B is helped in the education setting that is part of his normal life. Child A has had a journey to hospital that has disrupted normal feeding/ sleeping/ playing routines. Child and/or parent might be nervous and apprehensive in the hospital environment and consequently unable to make the most of the session – or even react against it.
- The therapist with Child A might feel that a few tears are inevitable and will sensitively continue the work. The teacher with Child B might want to avoid tears as much as possible and will take comforting a crying child as a priority. It is possible that Child A’s tears come in part from the strangeness of the environment and/or is picking up the parent’s feelings.
- Child A was a patient fitted into a planned treatment slot of fixed duration. There is pressure here for the therapist to make the best of the time available. Child B is in a familiar environment with familiar child-centred routines and is relaxed. He is more or less available for un-forced interactions with staff members depending on many factors including tiredness, mood...
- Both practitioners know the child’s development and learning so far and can judge readiness for new learning. It is possible the therapist had set a rolling-to-the-side target before the session or even at the end of the previous session. The teacher had no such target in mind. She initiated the rolling game spontaneously when the child looked at the toy and some instinct made her move the toy to the side.
- Therapist and Child A might perceive the rolling activity as an exercise, while teacher and Child B saw it as a game (but, for the teacher, of developmental significance).
- The teacher was aware of the Child B’s pleasure/displeasure, attention, interest, motivation, vision, hearing, preference for a particular toy and, perhaps, of an emerging skill of touching the toy with his hands when in an appropriate position in which he could see both toy and hands. All of this came into the game. At the most basic and clinical level, the therapist might have focused only on Child A’s motor activity. [I have seen this basic clinical approach but I assume it is rare. On the other hand, any parent who tries to learn from videos on the internet will see this clinical approach to rolling.]
- Both of these activities could have been in the child’s home with practitioners doing home visits.
I hope this comparison helps justify my ambition for early child and family support to move out of hospitals into education settings and for a child’s on-going development and learning to be considered an education issue rather than a health issue. I acknowledge I have described two opposite ends of a spectrum without describing what happens in the middle where perhaps, therapy becomes less clinical and, regrettably, teachers are less whole-child in their knowledge and skills.
Part 7: An ideal approach to early child and family support and including the role of paediatricians.
This ideal will focus only on reducing hospital visits to an absolute minimum and moving away from the medical model towards an educational model for babies and infants who need continuing support for their development and learning.
As an educationalist, anything I say about another profession, in this case paediatricians, is bound to be ill-informed to some extent. My first observation is that paediatricians are powerful people. They probably have more years of training than their colleagues in early child and family support, probably carry more authority and probably have higher pay. They might be instrumental in planning local hospital services and community services and in planning how hospital and community interact with each other in early child and family support. I have met very many paediatricians (and neonatologists) whom I admire and respect greatly.
Paediatricians might be closely involved with the life of a child and family from the start. Their concern for the child will include all aspects of the child’s health and development. They will have concern for how well the family is coping and might be able to tell them about other sources of support and information. Because they know the child so well they are in a good position to know what the child needs to keep coming back to hospital for and what needs will be better served in early education settings.
While I might wish I had paediatricians’ expertise I would not like to have their responsibilities. Many parents will be over-awed when talking to their paediatrician and very few will meet them as equals with the same social status. Paediatricians who want to enhance early child and family support will be powerful players – as will paediatricians who resist change and want to preserve an inappropriate medical model for these children and families.
In these essays I have described general hospitals as neurotic and morbid environments that we should keep children and parents out of as much as possible unless they need health investigations and treatments. Within the hospital environment there is likely to be a traditional attitude that the children we are concerned for are patients who have something wrong with them. All of this reinforces the idea that conditions labelled as ‘disability’ and ‘developmental delay’ can be put right (must be put right), after which the children can take their place in society as normal children. In my view, children, families and society are impoverished by these attitudes.
In a children’s centre, nursery or school children can be seen as ‘just children’, all needing different sorts of help for their development and learning. Here they are already integrated into normal life and its everyday social structures. Parents can see how their child is treated as a ‘learner’ and this will surely help them avoid treating their child as a patient with an illness at home.
In my ideal, the paediatrician’s role can include:
- Being clear with new parents about which of their child’s needs are health needs requiring on-going treatment and which are education needs.
- Working to the principle, ‘We should not plan for this child to return to hospital, paediatric department or therapy unit unless it is essential for health needs.’
- With each family at an appropriate time, giving information about the local educational organisations that could support their child’s development and learning.
- Helping build and maintain effective links and co-operation with the local education settings that will share children with the hospital.
In this de-medicalized early child and family support all staff members in hospital units will work to reduce the number of visits the child and parents have to make to the hospital. This can be by doing home visits and/or meeting children in their education settings. When hospital appointments have to be made, it must be for a specific health need. This relies on therapists seeing some of their traditional role as more to do with education than health. This includes skilled support for children’s understanding and skills in moving, playing, communicating, etc. In my terms this is education and should best happen in the young child’s home or in an education setting.
There can be a pro-active effort to talk to parents about when their child does and does not need to be perceived as a patient. There can be a discussion about not viewing challenges to development and learning as illness and not treating the child as a patient at home. The conversation can move on to every child’s needs for play, songs, love and bonds of attachment – even if there is a medical condition that requires treatment on hospital ward or outpatient clinic.
Very many paediatricians, therapists and others in hospital will already work in this way. There is much good practice to build on. Part of the point of this essay series is to have these principles of reducing hospital visits and de-medicalizing early child and family support acknowledged and embedded in professional protocols, in the information given to new parents and in all discussions with them.
Part 8: Five propositions for de-medicalizing early child and family support in a radical redesign
These five propositions aim to adjust the balance between health supports and education supports in what has commonly been called early childhood intervention (ECI). My phrase ‘children with conditions that do or might compromise their development and learning’ is intended as a broad description of babies and infants commonly helped by early child and family support systems. Within this group of children we will find genetic syndromes, diagnoses of physical or mental conditions, delayed development and conditions with no diagnostic label. It is a mixed bag in which the common factor is atypical development and learning that causes significant concern to parents and/or practitioners. A more common description is ‘children with disabilities or developmental delay’, but I am trying to avoid ‘disability’ as a negative term and suspect that the word ‘delay’ might lead some parents to assume, often wrongly, the child will eventually catch up. In this paper for the sake of brevity I shall refer to ‘these children’ or ‘our children’.
The crux of my argument is that in many countries, the conditions I have described are thought of as a health issue requiring treatment in such places as hospital outpatients, paediatric clinics, therapy centres and child development centres. While medical interventions might be needed for wellbeing, pain management and even survival, I think of a baby or infant’s development and learning as equally or primarily an education issue. This ‘education’, as I am going to use the term, is a natural element in how parents around the world bring up their young child and, sooner or later, becomes also the province of nurseries and first schools. While support is allowed to remain primarily in the domain of health services, we have the problem of flavouring a child’s condition with illness, disability and dysfunction. These terms are unnecessary, unfair and inappropriate and work against young children taking the rightful place with dignity in society.
Early child and family support has three pillars; health, education and family support. My five propositions deal only with the first two of these. The text with the first proposition explains in brief why a redesign is necessary. I am hoping my five propositions have some relevance in regions and countries with low, medium and high economies.
1. My first proposition is that our children’s visits to hospitals and other health centres should be reduced to the absolute minimum.
- These medical environments create and perpetuate negative attitudes in our children, families, practitioners and communities.
- Hospitals are busy, neurotic and morbid places that can impact on short and long-term mental wellbeing of children and parents.
- Visits to hospital can be expensive, time consuming and disruptive of normal child and family routines.
Hospitals and health centres are instituted to offer treatment for illness with some expectation of cure. This is not relevant to our children. Children become patients in the eyes of parents and others and take on a dependent and powerless self-image. Children are separated from their peers with such medical terms as ‘disability’ ( ̶ a label that will never wash off) and ‘developmental delay’ (that holds the promise of catching up). I see no good reason for labelling a baby or infant as disabled. It does not help anyone. Perhaps the word is more useful for older children and adults. I see ‘intervention’ as another medical word with a flavour of authority. I would replace it with ‘help’ or ‘support’. When my family has a problem, I would much rather an outsider comes to support than intervene.
Neurotic and morbid environments
These are described in the first of the seven essays. Does a child going to hospital feel like I do sitting in a dentist’s chair? Parents might have similar fearful feelings. The kindness of staff members might help but some deep-seated apprehensions will persist. Our children should be kept away from hospitals as much as possible.
Regular trips to hospital can be expensive and stressful, especially with young siblings and any necessary equipment for nutrition and respiration. Appointment times almost never consider the child’s routines for sleep, food, drinks, changing and play. Everything has to be put aside to meet the hospital’s needs for time and place.
All children might need to visit a hospital for health reasons and so should our children. Also, there might be a need for some occasional visits to specialists, for example neurology and genetics. The principle is to avoid a regime of regular visits for needs other than genuine health needs.
2. My second proposition is that in early child and family support we think of each child as a learning child and move our mind-sets away from disability, dysfunction, etc.
We can then consider how we can support their education at home and then in their locally available education settings. I am defining ‘education’ as the acquisition from birth of new and relevant understanding and skills, whether or not there has been adult support for it. The term ‘learning child’ displaces such medical terms as ‘invalid’, ‘sick child’, ‘patient’, ‘disabled child’, ‘atypical child’ and ‘abnormal child’. Our children join all the world’s other children as learning children. Then as parents and teachers we only have to consider what support they might need for their learning ̶ whether the task is holding a spoon or managing a first musical instrument.
3. My third proposition is that the primary task of specialist early child and family support practitioners is to educate parents and other practitioners.
This means helping parents acquire the understanding and skills they need to bring up their child and then to similarly support staff members in the education settings into which they follow the child in an advisory capacity. This can happen while working with the child and in TAC (Team Around the Child) meetings.
4. My fourth proposition is that we recognise that much of what we call paediatric therapy is actually education.
In this education our babies and young children learn, as far as possible, to bond, look, listen, sit, stand, roll, creep, manipulate with hands, make choices, communicate ‘yes’ and ‘no’, recognise pictures/symbols/words, manage emotions, develop self-esteem, relate to others, empathise, make plans, etc. All these new understandings and skills build on what the child has already acquired and will endure if they are relevant to the child’s daily routines at home and/or at school. There is an invitation here for the world of education and education psychology to embrace our babies and infants to a greater extent than at present.
5. My fifth proposition is that all specialist practitioners in early child and family support should be considered as a coherent group in each locality’s workforce.
This group would then include teachers, paediatric therapists, psychologists, play workers, etc. A working title for this group could be ‘specialist early childhood practitioners’. While valuing the training, work and wisdom of paediatric therapists, I would drop the confusing and ill-defined word ‘therapy’. A major task of these practitioners must be to support parents and nursery/school staff members. Because these specialists are expensive to employ, there should be an intermediate workforce of home support workers, nursery assistants, etc. all working with children on a more regular basis than specialists can, but working under their guidance. Training for this workforce must cover, at appropriate levels, the science of how babies and young children learn. This training is an essential part of the redesign.
While recognising the good work that happens in hospitals and health centres around the world, and acknowledging the high levels of practitioners’ caring and competence, I believe placing early child and family support in these institutions has happened by default with no conscious decision making. I also believe that the work is unhelpfully flavoured now with negative medical terms about deficiencies while education terms tend to be about growth. I see a great need and great opportunities now for a radical redesign.
I have made a strong appeal to release early child and family support from out-dated medical attitudes. Changing ‘early childhood intervention’ to ‘early child and family support’ is one example of freeing ourselves from inappropriate institutional attitudes that are much more medical than educational. My reasoning in this stems from seeing a baby or infant’s development and learning as primarily and education concern.
Of course, effective integrated early child and family support must involve education, health and social care in response to the child’s condition and the family’s situation. We can only achieve effective integration once we are clear about the roles of practitioners in these support services. I see confusion in many countries that detracts from effective support. I believe support for a baby or infant’s development and learning should happen first in the family home and then in nurseries, kindergartens and first schools. Traditional role confusion results in children and parents having to make regular and unnecessary visits to hospitals, health centres and clinics that can impede attachment processes at home and reduce opportunities for inclusion in local community facilities for play, education and social interaction.
Peter Limbrick, June 2021.
Note: This long essay is a compilation of a series of shorter essay posted on tacinterconnections.com during 2020 and 2021 starting here.