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Overview: Early Childhood and Disability
By Barbara Kolucki, ECCD and Children's Media Consultant to the UNICEF-Maldives Office.
I have been asked to write about some of the new research in the field of Early Childhood Care and Development (ECCD) and about how it all applies to children with disabilities.Ê Most recently, I have been working as the ECCD and Children's Media Consultant to the UNICEF-Maldives Office.Ê We are developing a strategy document, prototype materials for children between the ages of 0-5 years and for their caregivers.Ê I have been reviewing a vast amount of material on the new developments and insights in the field of ECCD.ÊÊ In addition to this current assignment, I have been working in the fields of early child development, media for and about children, and public education about disability for over 20 years.
Following is an overview of some of the latest research in the field, a summary of UNICEF current priority actions in ECCD and some of the implications for infants and young children with disabilities.
Global Trends
There are new magazines being published, new websites, consultative groups to the United Nations Agencies, new international NGOs and Foundations devoting time and money to Early Childhood Care and Development (ECCD).Ê Even advertising for diapers/nappies and toys contain important messages about ECCD.ÊÊ Parents are being told about the critical importance of these first years of a child's life and the variety of things they can do to stimulate their baby's growth and development.ÊÊ
It is being acknowledged that much of the new research is basically confirming what parents and practitioners in the field of early child development have known and been practising for many years.Ê What we have now that is new is scientific data to confirm this intuition, knowledge and practice.
A brief summary of this research:
á The years 0-5, but especially the first three years, are critical in the formation of intelligence, personality, and social behaviour, and the effects of neglect are cumulative.
á Brain development before the age of one year is more rapid and extensive than previously realised ö the brain nearly triples in size within the first year of life.
á Brain development is much more vulnerable to environmental influences than suspected.Ê This includes not only nutrition but also the quality of interaction, care and stimulation.
á There is evidence of the negative impact of stress during the early years on brain function.Ê Children who experience extreme stress during the early years are at greater risk of developing a variety of cognitive, behavioural and emotional difficulties.
á There are proven ãwindows of opportunityä for learning during the first years of a child's life. If these windows are not opened at the critical time period, it will be difficult if not impossible for a particular type of learning to occur at a later date.
á Children who have fathers that are involved in nurturing and care giving often learn better and have fewer social and behavioural problems later in life.
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UNICEF's New Priority Area
For UNICEF, and its work with collaborators throughout the next decade (2000 ö 2010), one of the key priorities will be Early Childhood Care and Development.ÊÊÊ ÊExecutive Director, Carol Bellamy, calls it a logical extension ãof everything we have done before; it takes us beyond survival. It affirms that a healthy and nurturing environment in the early years brings with it physical, psychological and cognitive benefits which will sustain the child for life.Ê It recognises that mere physical well-being is not enough; there must be the kind of loving emotional support which brings meaning to childhoodä. (Carol Bellamy, CF/EXD/IC/1999-02).Ê This is the first time that the Organisation is highlighting and prioritising the inter-related critical importance of development together with survival.Ê
To this end, UNICEF has established an inter-sectoral working group on young child development that met in September of 1998.Ê In December 1999, a meeting on Early Childhood Care (ECC) is taking place in New York City.Ê The Workshop focuses on programming that has been initiated by several UNICEF Country Offices, particularly those highlighting 1) the central role of families; 2) the supportive role of communities; 3) enabling national environment and; 4) communication and advocacy.Ê Programme Guidelines on ECC as well as Tools for Assessment will also be discussed.Ê
Over the last 25 ö 30 years, various concept papers and documents on ECCD have been written and presented to UNICEF's Executive Board.ÊÊ And, over the past two decades, there have been pioneers working with and for UNICEF who have paved the way ö just as parents and ECCD professionals have paved the way for the current ãECCD information explosionä.ÊÊ Some of these individuals included Cyril Dalais, Dan O'Dell, Cassie Landers, Nigel Fisher, Bob Myers and Judith Evans.
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In 1995, a series of four 10-minute animated videos and guidebooks were developed by UNICEF under the guidance of Landers and Fisher.Ê The series covers basic information on normal child development and simple ways a caregiver can nurture skills in language, social, emotional, physical and motor development.Ê They are available in English, French and Spanish through UNICEF, attn: Bill Hetzer, 3 U.N. Plaza, New York, N.Y. 10017 USA.ÊÊÊ Some countries, including Lebanon and Turkey have already re-packaged the videos together with live-action segments from their country.Ê
Infants and children with disabilities
Babies are born with physical, social and psychological capacities allowing them to communicate, learn and develop.Ê This is true for all infants, including those who are disabled.Ê What might be different is the limited or lack of use of a particular sensory organ or a physical impairment of one type or another like cerebral palsy or club foot. Or, the child might be mentally retarded.Ê But even the most severely disabled child can learn.Ê If the child's capacities are not recognised and supported, these capacities will wither rather than grow and improve.
How does some of the new research relate to infants and young children with disabilities?Ê What is unique to babies who are disabled that what are the implications for early intervention?ÊÊ Here is a summary of some disability specific information that must be shared with laypersons and caregivers around the world:
á The greater the degree of sensory deprivation for an infant (visual, hearing, movement) and the longer it lasts ö the more permanent the impairment or disability.Ê
á Even in the case of sensory deprivation, it is not only the particular sense that might be impaired, but also cognitive, social and emotional development.ÊÊ
á For many impairments, the timing for intervention is critical.Ê Simple surgery, treatment or exercises is usually much more successful if it is done in the first years of a child's life. For example, a cataract should be removed from an infant before the age of six months.Ê Other types of surgery, for example, alignment surgery for strabismus, are usually recommended between the age of 6 ö 18 months.
á It is not uncommon for some disabilities to go unnoticed unless parents are aware of what to look for.Ê For example, many children are not identified as being deaf or hearing impaired until the age of two or more.Ê Most babies who are deaf often coo and babble and so unless the baby's hearing is checked regularly, or a parent notices that the baby does not react to loud sounds ö it is not noticed until the time a ãtypicalä baby begins to speak.Ê Since hearing is connected to every other aspect of development, however, it is important to make an early identification.Ê Children who are introduced to sign language early usually do better (academically, socially as well as in the complexity of use of sign language communication) than those who do not learn it until they enter primary school.Ê In addition, many children can benefit from hearing aids or cochlear implants if available.
á The sequence of skill acquisition is sometimes affected when a baby is disabled.Ê For example, a child who is blind might be delayed in walking but not in sitting.Ê Because of lack of visual stimulation, as well as a self-protective fear, many babies who are blind will be less motivated to move and explore.
á Babies brains are vulnerable to stress. Children who are in situations of war, violence, and abuse, especially in the first three years of life, can develop brains that are visibly smaller as well as suffer from emotional problems.
á Because we know that experience affects the size and structure of the brain, it is imperative that children who are diagnosed with a disability receive as rich and stimulating an environment as possible.
In many western countries, programmes of Early Intervention for infants and young children with disabilities have been the norm for around the past 25 years.Ê Identification of a disability at birth or within the first months of life has allowed for the youngest infant to be placed in a programme where she is nurtured and stimulated together with addressing her medical needs and the emotional needs of her family.Ê Remarkable programmes range from those that train parents on what they can do at home, specific techniques with regard to caregiver-child interactions based on disability specific rehabilitation, play situations where young children who are disabled can learn social skills prior to inclusion or mainstreaming into a regular pre-school or classroom setting.Ê A significant amount of research has been done with regard to the effectiveness of these programmes and though there are many suggested areas for future improvement, the generally held opinion is that these programmes have been and are effective.Ê
What is important to point out is this: these programmes have been doing for many years exactly what is being presented today through the media as critical interventions for non-disabled infants.Ê In fact, they have a lot to teach all of us working in the field of ECCD.
What happens, however, to the majority of infants and young children with disability in the world ö the nearly 80% that live in developing countries?ÊÊ For sure, many are cared for and loved by their families as much as any child in the world.Ê And there are numerous instances of families that instinctively know what to do, how to adapt, and the importance of integrating their child into family, school and community life. There have been pioneers, too, that have brought early intervention projects to countries like Jamaica, Guyana, Malaysia, the Philippines, India and others.Ê Some of this work is with infants but because many of the children are not identified as disabled until after their first two to three years, many projects work with pre-school aged children.Ê These projects are exceptional and many have spawned ãsatellitesä to more rural, isolated areas.Ê And more community-based rehabilitation (CBR) programmes that were originally designed for adults with disabilities now include a component for children.
I have worked in over a dozen countries, mostly in the developing world, and know that a major challenge to reaching infants with disabilities in their earliest days is the deeply instilled social attitudes that lead to infants and young children (or adults) with disabilities remaining hidden and isolated.Ê Even with changes in many parts of the world, there are still millions of people who have never seen a positive portrayal of a child or adult with a disability in a book, television programme or film.Ê They might not have ever met an independent person who is disabled ö I know this to be true from people I meet in my work ö as recent as a week ago!ÊÊ If a parent truly believes that his child cannot learn, will not be able to study, will never marry or hold a job ö then it might seem reasonable to simply love her and care for her basic needs.Ê This often leads to infants and young children being spoken to less, played with less, taken out less, stimulated less, educated less.ÊÊ
Even with the Internet and satellite explosion, few parents have access to the same information that would be given in one of the typical Early Intervention Projects in western countries or in model programmes in developing countries.Ê Of course, we must all try, through our various efforts in our various fields, to increase exposure and access to information to more parents as early as possible.Ê But we must also remember that it needn't be an expensive, ãproperä Early Intervention Programme to make a difference in the life of a young child who is disabled.Ê ÊÊParents of infants and young children who are disabled have a right to the most basic parenting information that includes:
á Every infant, disabled or not, can benefit from nurturing and stimulation of their senses.Ê The more a child is spoken to, sung to, read to, danced with, exercised, played with, encouraged to explore in a safe environment ö the more her brain and body will develop.
á The earlier a child is detected with a disability, the more she can benefit from both rehabilitation as well as simple interventions that help maximise her ability and potential.
á There are simple things a parent can do to detect a disability in a young child. These include: holding a brightly coloured cloth or toy on one side of a baby's face and watch to see if she follows it to the other side with her eyes; standing quietly behind a baby and then clapping one's hands or slamming a door to see if she makes a startling motion; noticing if a baby after around three months can lift her head when placed on her stomach; smiling at a baby and watching to see if the baby responds by smiling, cooing, looking back, etc.Ê Most parents and grandparents know what other child have done around a particular age ö they already have a skill in early detection!Ê
á There are simple things that can be done in any home to enrich the baby's environment.Ê These include: safe, tactile toys; brightly coloured or black and white mobiles; labelling objects and actions; infant massage that includes talking with the baby, naming body parts and responding to the baby's cues; encouraging the baby to communicate in whatever way she can; guiding touch and movement; etc.
á Every child, disabled and not, needs and has a right to continuous contact with caring adults and children her own age. ÊThe more children and adults with disabilities are seen out in the community ö the more children and adults with disabilities will be seen out in the community.
Conclusion
The Convention on the Rights of the Child (CRC) includes the right of children who are disabled to equal opportunity as well as to have their disability detected and treated as early as possible.Ê The UNICEF Mission Statement includes a commitment to ensure special protection for children who are most disadvantaged, including those with disability.Ê The new focus and priority attention to ECCD must also include infants and young children who are disabled.Ê The families of these children must be included as well.Ê This cannot be seen as a specialised or add-on component of ECCD but one that is integral to ECCD.Ê It is not only absolutely critical but it is possible for every programme, every product and every country to include infants and young children with disabilities.ÊÊ This is a moral and ethical imperative that will, as the research tells us, positively or negatively affect the lives of millions of children in the world.Ê