Bringing up babies and young children who have very special needs

A 21st century guide for parents, students and new practitioners

Verso
Bringing up babies and young children who have very special needs
Copyright © Interconnections 2019. Published in the UK by Interconnections, Clifford. Peter Limbrick asserts his moral right to be identified as the author of this book. No part of this publication can be reproduced or stored in any form, or by any means, without prior permission in writing from the publisher. ISBN 978-0-9576601-6-8 Printed and bound in the UK by 4edge Ltd, Hockley. Illustrations © Martina Jirankova-Limbrick 2019

Note
This version of the book is true to the original text but not to the design and illustrations.

For Miloš Jiránek

About the author
Peter Limbrick had a brother with cerebral palsy born just before he went to study zoology at Liverpool University. Nicholas died at forty years of age. Peter’s career has taken him into special schools as both teacher and senior manager and into two voluntary projects as director: One-to-One and One Hundred Hours. One-to-One was part of the UK movement in the 1970s to get children and adults with intellectual disabilities out of institutional care. One Hundred Hours in the 1990s pioneered keyworker support for families whose baby had neurological impairment.
From his One Hundred Hours experience, Peter developed and published the Team Around the Child (TAC) approach in 2001 and has promoted this in Australia, Canada, Croatia, Czech Republic, Ireland, Sweden and the UK.
Peter lives in the Black Mountains on the border between England and Wales where he edits the international Interconnections News Service and its online TAC Bulletin about babies, children and young adults who are disabled, marginalised or vulnerable.

Lost in a labyrinth of country lanes, a driver asked a villager for directions to the airport. The surprised villager replied,
“The airport? I wouldn't start from here if I were you!” Similarly, if I were given the task of designing effective support for babies and young children who have very special needs and their families, I would not start from where we are now in the UK. (Peter Limbrick)

Contents
Introduction
1. The three pillars of early child and family support
2. Health: The first pillar of early child and family support
3. Education: The second pillar of early child and family support
4. Family support: The third pillar of early child and family support
5. Evaluating early child and family support
6. Humanity around babies and young children who have very special needs
7. Unhelpful features of out-dated support
8. Concluding remarks
Appendix 1: Occupational Therapists in Early Intervention
Appendix 2: Questions a parent might need answers to
Appendix 3: How programmes can be integrated
References

Introduction

This small book is written for people who are coming new to the world of babies and young children who have very special needs. I hope this will include new parents, others with a parenting role, family members, students who might eventually work with these children and people who have just moved into this field of work. It can often feel like a world separated from the main world because babies and infants who have very special needs belong to a small minority most people will not encounter very often if at all.

I have used the phrase ‘bringing up’ in the book’s title, because this is what parents all around the world do and it is what this book is about. Parents bring up their children as best they can whatever abilities and needs their children have. But, unfortunately, when a baby or young child has very special needs it can feel that some of this parenting role is taken over by one or more practitioners. Parents might then find themselves inappropriately forced into a secondary or subservient role because practitioners appear as experts and because parents do not yet know all the same things the practitioners know.

This book, then, is about parents bringing up their young children and how the main task of agencies and their practitioners in both hospital and community-based services is to respect and support parents in this role. There is very clear recognition here that parents have the most important role and responsibility. The treatments and programmes provided by practitioners must be supplementary to and supportive of this parental role. While an ideal is some sort of partnership, parents must be in the leading role making the important decisions about support for their child and family.

It is common in every country for parents of all young children to ask for help when they need it – during pregnancy, after the birth or in the coming months and years. The up-to-date support I am describing in this book follows this natural approach. In this, parents bring up their babies and infants who have very special needs as best they can and ask for help when they need it. Roles are very clear in this:

• Babies and young children belongs to their parents.

• Parents carry the right and responsibility to bring up their children.

• Agencies and their practitioners carry the professional responsibility to offer relevant and effective support when invited to do so.

In my experience, most parents of babies and infants who have very special needs will want support and will appreciate relevant help that comes when it is needed. If parents are fortunate, practitioners will listen very carefully to them about what is needed before they begin helping.

The babies and young children I am writing about

‘Very special needs’ is not a scientific term or one that is a recognised in hospitals, clinics or schools. But it fits this book because it suggest a spectrum at one end of which are children whose special needs are largely straightforward and, at the other end, children who have a collection of diagnoses and conditions that are complex and often hard to fathom. This book is about the latter. Included in ‘very special needs’ are conditions and impairments that influence how well a child sees, hears, thinks, moves, uses hands, communicates, learns, behaves and relates to other children and adults. (This list embraces children who have a diagnosis of autism.)

Babies and young children who have very special needs might have a genetic syndrome. They might also have medical conditions that require, for instance, nasogastric tubes, an oxygen supply and a regime of essential medications in hospital or at home. Some will have a short or uncertain life expectancy.

When planning support to help these infants learn, rather than describing them as having multiple or complex disabilities, I prefer to say they each have their own single unique multifaceted condition. When we stop thinking in multiples, we can find less complicated and more effective ways to support each child’s development and learning. Readers will quickly see if I am writing about children they are concerned for. Much of what I say in this book, though, will be relevant to parents, students and practitioners of children at all parts of the spectrum of special needs.

In this book I will focus more on babies and young children’s learning than on their health issues. This comes naturally to me as a teacher, but I acknowledge that health, development and learning influence each other. Part of my appeal in this book is for babies and young children to have earlier help with their learning or education. I will also give some focus to family support drawing on my experience as a family keyworker.

My phrases ‘babies and young children’ or ‘babies and infants’ both refers to babies and infants up to school age. These first months and years can be a challenging time for families as they adapt to a new life with a child who has very special needs. After these first busy years, many families find life settles down into calmer times with the new child requiring less special attention and taking their rightful place as a valued member of family, nursery and school.

For some babies and infants who have very special needs, some relevant support has traditionally come in many countries under the name of ‘early childhood intervention’ (ECI). This type of support has grown since the middle of the last century as a predominantly medical mode using practitioners available in hospitals and clinics. In some localities, teachers are also involved. In my experience, babies and young children who have a multifaceted condition have brought to light some confusions in early childhood intervention about what therapy is and what education is. They are traditionally thought of as separate from each other and offered to children as separate interventions. This fragmented approach loses its validity when helping an infant in such natural activities as managing clothes, using cup or spoon, and moving across a room to fetch a ball. Should therapists or teachers support this learning? I will argue in this book for a degree of integration of the two on the basis that keeping them totally separate makes no sense and brings serious disadvantages to children, families and practitioners.

Perhaps in the future, there will be fully qualified practitioners for early child and family support trained to bring everything together for new children who have a multifaceted condition and their families. Because these children need their practitioners to have very specialist knowledge, I imagine training would have a thorough foundation of whole-child understanding followed by a chosen specialism in movement, communication, play, cognition, etc.

In the absence of such all-round practitioners, the Team Around the Child (TAC) approach has been designed to bring parent and practitioners together to support an individual child and family. The early child and family support I will describe in this book is based on the TAC approach.

The Team Around the Child approach (TAC)

The principles and practice of the Team Around the Child approach or ‘TAC’ are free for any agency and practitioner to use. The term ‘TAC’ is used in two ways in this book. In its wider sense, it refers to the TAC approach. In its narrow sense it refers to an individual child’s TAC team. TAC is used in many countries and people can adopt this approach without applying for permission from anyone. The downside of this is that some out-dated agencies describe their work as TAC when it is clearly not. These false TAC projects are likely to disempower parents, treat children in bits and blindly follow a medical mode when it is not appropriate on its own.

In the TAC approach, the two or three main practitioners around a baby or infant agree to meet together regularly with parents to share observations and make a unified plan of action for the child and family. This shared commitment by practitioners and parents to meet face to face as a small, individualised and mutually respectful team defines the TAC approach. The ‘main practitioners’ are those teachers, therapists, psychologists or others who have the most regular and practical involvement in the child’s development and learning. The essence of TAC is genuine teamwork to which each member, whether practitioner or parent, contributes their knowledge, experience, and skills. TAC is characterised by collective caring, concern, commitment and competence. Shared expertise, imagination and creativity lead to a unique and multifaceted plan of action for each unique child and family.

Because it is genuine teamwork, TAC depends on its members being able to relate to each other with honesty, respect and trust. Each TAC can advocate strongly for its child and family because its members know more about them than anyone else does and because each TAC action plan corresponds with parents’ wishes. The TAC approach considers the needs of both child and family knowing that helping one helps the other, but also knowing that child and family have very different sets of needs.

A major part of each TAC’s function is to promote the baby or infant’s learning. In TAC discussions, education and therapy programmes can be integrated into a whole approach to support the child’s care, socialising, play and everyday activity (washing, eating and drinking, managing clothes, bath time, bedtime, etc).

An important element that supports all aspects of the TAC approach is the keyworker3. This is the TAC practitioner who has most close contact with the child and family. They are the first person parents will usually contact when help is needed with a new challenge and are recognised by the wider group of people supporting the child and family as the person who can link everything together.

Taking a wider view of TAC, the advantages it brings to children, families and practitioners include the following:

• Parents are acknowledged, respected and supported as the people carrying the right and responsibility to bring up their child and are partners in their child’s TAC.

• Parents have a keyworker – one special person they get on well with and trust for emotional support and who helps keep all elements of support linked together and well organised.

• From the beginning, a rounded picture is built up of the whole child living and learning within a family setting.

• The child’s abilities in moving, seeing, hearing, communicating, cognition, etc are understood to connect with each other and to be supportive of each other as the child learns.

• Babyhood and infancy are respected – preventing the new child being overloaded and stressed with too many programmes and too many non-family adults.

• Family life is protected and nurtured – preventing parents being kept too busy and stressed with too many appointments in too many different locations.

• The collective effort nurtures and protects child-parent attachment.

• The collective effort safeguards the quality of life of the new child and of the whole family.

• Practitioners belong now to a small mutually supportive team in which they can enhance their knowledge of all aspects of child development and learning.
  

Each and every baby and infant in the world comes and grows as an integrated whole child involved in natural everyday activities. (Exceptions include those brought up in institutional care and in deprived and abusive situations.) New understanding and skills integrate the various child development components of communication, perception, cognition, movement, etc. We can describe TAC as the effort for the key people around the child to achieve the same integrated wholeness with each other in their work with each of these new children.

Early child and family support

Early child and family support is my preferred term to replace ‘early childhood intervention’ and ‘early support’. This term brings families clearly into the picture. The early child and family support I will describe is offered as an ideal to work towards. How far a child and family’s support can move in this direction will depend on the child, parents, practitioners and the situation at the time.

Put briefly, effective early child and family support focuses equally on the baby or young child and the family. These are two different sets of needs but are both equally deserving of support in the first hours, days, weeks, months and pre-school years. In this, parents are respected and supported as the people who carry the responsibility of bringing up their children and practitioners work to support parents in this role. Children are respected and valued and attachment between child and parents is nurtured. At the same time, the quality of life of child and family is a continuing priority. The baby or infant’s development and learning programmes come to them as natural baby or infant activity, firstly in their own home and then in any playgroups, nurseries and children’s centres they attend.

My suggestions for early child and family support fit for the 21st century come mostly from my direct experience during four decades of working with babies and young children who have a multifaceted condition and their families. All that I say in this book comes from my direct experience unless I am quoting another author. Each of the main elements of the effective support I will describe are already benefitting some children and families in my country and others, but I know of very few examples of all elements being used together. Children, their families and particular practitioners have been my most important teachers. I have learned that all children are unique, all families are unique, all practitioners are unique.

I hope this book shows respect for children, parents and practitioners and avoids all unjustified generalisations. It will enable parents to compare the support they are getting with the early child and family support I describe. Students will see whether their training is out of date or modern. Practitioners coming new to this field of work will see if their employing agency is stuck in inappropriate medical or institutional attitudes.