Part 3: Diagnosis, Early Learning-Intervention and the Law Concerning the Education of the Deaf Child

A frequent reason for a delay in diagnosis is that hearing loss is rarely "total".  Almost all infants can hear horns, banging pots, thunder and other loud sounds (Adams, 1997).  Infants also respond to vibrations.  Parents reporting these inconsistent observations to a medical professional or physician may find a ëwait and seeí attitude.  Sometimes a physician will even say nothing is wrong.  Pediatricians have been known to perform tests in the office that are not much different than those parents have conducted in the home.  It is estimated that in one-third of the cases of childhood deafness, misdiagnosis, insensitivity to parent feelings and ignorance by professionals have occurred (Adams, 1997).

The second state of dealing with the loss of a childís hearing is the "Diagnosis State: Shock and Recognition".  This is usually the first reaction to the discovery of the childís condition.  Shock is temporary and progresses into anxiety, fear and panic.  Parents may experience anger, sadness, and even denial.  It is common and natural not to want to believe this has not happened to your child (Adams, 1997).  Time may be needed for a parent to understand and adapt to the situation.

It is important to mention that it would be vital both for the parentís feelings as well as for educational reasons, to gain knowledge of the etiology or cause of deafness.  Ignorance can cause greater anxiety as well as problems. Knowledge will help the parentís attitudes in dealing with their childís hearing loss.  The ramifications for education are obvious; different kinds of hearing loss may require different approaches.  For example, a student with a progressive hearing loss would need amplifications as soon as possible for language and speech development.  Knowing early if the hearing loss is pre or post lingual would also be important in the education of the deaf child.

There are, obviously, many reasons for hearing loss.  Hearing loss can be sensineural, conductive or even a combination of both.  Causes of hearing loss include: heredity factors; trauma or injury; disease; accidents; drugs; blood incompatibility; prematurity; and even more.  For the purpose of this paper, deafness will be defined as having hearing loss of 75 decibels or greater (in New York State, it is defined as 80 decibels or greater).

Parents of deaf children face a slow and complex learning and adjustment process.  Some hearing parents of deaf children never fully comprehend the situation.  More than 90% of parents of deaf children are hearing.  On the other hand, deaf parents of deaf children do not typically experience adjustment difficulties when their child is diagnosed with a hearing loss.  Generally, deaf parents prefer having deaf children who can share their language and culture (Adams, 1997).

The third stage parents face in dealing with their childís hearing loss is the "Postdiagnosis Stage: Recovery and Acceptance".  During this stage, most parents accept their childís deafness to a large degree.  Acceptance does not mean being content with the situation.  It means that the parent is better able to cope with the changes brought to the familyís life.

It is not unusual for parents to be overwhelmed with all the information professionals bring to them.  Some of the information is understandable and much of it is technical.  The philosophies of education of deaf children alone demand study!  However, early education and intervention is vital for the deaf child to progress and parents must attend to this task as quickly as possible after a diagnosis is made.

Early childhood education in the United States has been an important component of deaf education since the mid-nineteenth century.  Several core elements have endured throughout the years despite the struggles and controversies characteristic of the field of deaf education.  These early programs included many elements of what are today considered to be "best practices".  These may include:  (1) Early integration of deaf, hard of hearing and hearing children; (2) Natural signs and gestures as essential to developing a foundation for early communication; (3) Early introduction of reading and writing (such as Gallaudet Universityís "Shared Reading Program"); (4) Commitment to a "natural" environment; and (5) Recognition of the family as the heart and core of education and the home as a model of school for the young (Sass-Lehrer, 1995).

Regarding this last point, its interesting to note that the United Nations Educational, Scientific and Cultural Organization (UNESCO) commissioned a recent committee to study the education of children who are deaf around the world.  The group reported that whatever educational choices are made for the deaf child by the parent, "full participation of both parents in their childís development is of critical importance".  The group further stated: "It is no longer acceptable to neglect sign language, or to avoid educational programs for the deaf".  Deaf children cannot truly be educated in isolation from the parent.

Early detection, diagnosis and planning are essential to provide the deaf child with optimal conditions for development and learning.  Most deaf infants are as alert and responsive to their families as hearing infants are.  The deaf infant applies other strategies and senses such as visual, tactile, olfactory and kinesethic to compensate for auditory deficits.  Even when professionals test babies that are deaf, they may not realize the infant cannot hear because he/she uses other senses to produce the same behavioral response to noise as hearing babies (Luteke-Stahman, 1994).

The goal of an early intervention program and educational professional such as the Parent-Infant Specialist, is to ensure that the development of the child and the quality of life within the family is the best it can be.  In order to optimally benefit the deaf child, it is important to establish goals and objectives for the child and family.  Early intervention programs must be able to evaluate children for their potential to develop in all areas: hearing, speech, language, motor, cognitive, social and emotional (Gatty, 1995). Some programs have their own team of interdisciplinary specialists.  Other programs are affiliated with agencies or even hospitals specializing in comprehensive evaluations.

Early intervention programs serving the deaf child need to provide parents with services to monitor the whole childís growth and development not just the hearing status and information about auditory development.  The state of the parentís emotional well being directly affects the kind of home environment they can provide for their family.   Professionals in programs of early intervention must be highly skilled and prepared to listen and support parents until they acquire more experience with hearing loss and begin to answer their own questions about their childís future.  Listening to emotional reactions of parents and providing them with accurate information, as well as introducing them to other deaf people, is an important component to an early intervention program for the deaf.

In the 1970ís, two important laws were passed by the United States Congress that have profoundly impacted the education of deaf children.  They are: the Rehabilitation Act of 1973, in particular Section 504, and the Education for All Handicapped Children Act, Public Law (P.L.) 94-142, passed in 1975 and later updated and renamed the Individuals With Disabilities Education Act (IDEA).  These laws required that states and local school districts provide a free and appropriate education to every disabled child starting from three years of age (Bahan, Hoffmeister, Lane 1996).  Just as P.L. 94-142 provided the framework by which free, appropriate education is to be provided to school aged students, as well as preschool students, amendments to the IDEA and P.L. 99-457, provided a framework for assisting states in developing and implementing a comprehensive, coordinated and multi-disciplinary program for early intervention services for infants and toddlers with disabilities ages birth to three years old along with their families.

The most recent legislation, the Americans With Disabilities Act (ADA) of 1990 was designed to protect people with disabilities from discrimination based on disabilities.  Although the United States federal government defines the "deaf" as a "linguistic minority", they are protected by the ADA.  The ADA provides opportunities for all children to participate in community activities and programs.  The federal regulations of the Individual Family Service Plan (P.L. 102-119) advocates the integration and inclusion of children with special needs into community-based programs.  In addition, these community-based programs must modify their services and accommodate children and adults with disabilities.  There initiatives have aided the inclusion of children who are deaf into natural environments such as child care, nursery school and preschool programs (Sass-Lehrer, 1995).  It is unfortunate, however, that legally obligated institutions still do not conform to these public laws.

Under the IDEA, the federal government became responsible for defining "appropriate education" for children with disabilities; and, it proceeded to issue guidelines specifying a range of acceptable placement options.  The problem confronting the deaf was, and still is, twofold.

First, under the "least restricted environment" principle, as interpreted by the Office of Special Education and Rehabilitation Services of the Federal Department of Education, the residential schools for the deaf are a core element in the very identity of the many members of the "Deaf Culture" because this is where deaf children of hearing parents may encounter peers and adults fluent in American Sign Language (ASL) for the first time.  Thus, significant learning and cognitive development flourish.  However, these residential schools are often referred to as "institutions" and positioned at the bottom of the educational placement hierarchy.

Second, most deaf children require the use of a unique visual language in order to learn.  This unique visual language is not the language of instruction or of conversation in the regular public school setting.  However, this is the most popular placement of choice for hearing parents of deaf children.  Thus, the laws that were created to protect those with disabilities carry with them conflicts for the child who is deaf who wishes to obtain a quality education (Bahan, Hoffmeister, Lane, 1996).

The primary impact of a childís early learning and development is through interaction with the parent.  It is through direct interaction with the child that the teacher can give feedback to the parent about the best way to interact with their deaf child to promote growth.  One-to-one work with an infant that is deaf includes play activities to enhance cognitive, linguistic, social and emotional development.  This provides the foundation for and the opportunity to develop language (Gatty, 1995).

With the growing recognition and acceptance of ASL, a new type of parent-infant program emerged in the late 1980ís that used ASL as the basis for enhancing language development in deaf infants.  With continued widespread recognition of ASL as a full-fledged natural language of the deaf, some educators have begun to realize the merits of introducing ASL into the parent-infant program.  Typically, a professional who is deaf provides services to hearing parents and their deaf infantboth in the home and at the school site.  Often, skilled sign language interpreters are integrated into this model.  In families where early intervention took place and sign language was taught (as well as used as part of this program), the evidence shows clearly that these families had an advantage over those families that did not participate in early intervention programs.

One particular advantage that parents who use ASL bring to their deaf child involves the vital task of teaching the child how to read.  Parents who can use ASL can read to their child.  Thus, early literacy is developed and an experiential base is broadened vicariously.  These parents can also help their deaf child access environmental print (advertising, signs, etc.) thus teaching them at an early age the importance of print.  Language growth is positively and significantly affected in these ways.  In addition, this is an enormous later benefit to the deaf child in the classroom as well as to the teacher.

Several studies have further shown that when parents and young deaf children are able to exchange information, this interaction provides a scaffolding on which greater and deeper social and intellectual interactions can be constructed (Bahan, Hoffmeister, Lane, 1996).  This scaffolding, according to Piaget, is absolutely vital to cognitive development.