The Secret Recipe of Early Intervention Through the Individualized Family Service Plan (IFSP)

The Secret Recipe of Early Intervention Through the Individualized Family Service Plan (IFSP)

الوصفة السرية للتدخل المبكر من خلال خطة خدمة الأسرة الفردية (IFSP)

Dr. Nadine Hasan Haidar  د.ندين سهيل حسن حيدر[1]

Abstract

“This article emphasis the important role of parents, teachers, and caregivers in screening and assessing children with disabilities, at a very early stage, in order to implement the appropriate early intervention services. Several theories and recent researches focus on the significance of sharing services that support relatives to improve the development of their children, by means of representations that reveal the suggestions. The new recommended educational and psychological practices focus primarily on early intervention that lights the main concerns proposed by families of children having disabilities.  Furthermore, notwithstanding the countless offerings to what is suggested for family-centered thinking and training, the IFSP (Individualized Family Service Plan), guides the delivery of assessment services. This article assesses these services in order to determine the occurrence of recognized routines observed as the base for product development, specifically when the examination-providing caregiver has received appropriate training.  In addition, findings of this article show that around 50% of the activities observed and identified by the caregivers as unsatisfactory, are used in outcome development. Moreover, important connections between caregivers were discovered as strong connections between activities and improvement”.

Keywords: Caregiver, Screening, Assessment, The 13 Disability Categories

الملخّص

“تركز هذه المقالة على الدور المهم للآباء والمعلمين، ومقدمي الرعاية في فحص الأطفال ذوي الصعوبات وتقييمهم في مرحلة مبكرة جدًا، من أجل تنفيذ خدمات التدخل المبكر المناسبة. تركز العديد من النظريات والأبحاث الحديثة على أهمية مشاركة الخدمات التي تدعم الأقارب لتحسين نمو أطفالهم، وذلك عن طريق التمثيلات التي تكشف الاقتراحات. وتركز الممارسات التربوية والنفسيّة الجديدة الموصى بها في المقام الأول على التدخل المبكر الذي يسلط الضوء على الاهتمامات الرئيسة التي تقترحها أسر الأطفال ذوي الإعاقة. علاوة على ذلك، وعلى الرّغم من العروض التي لا تعد ولا تحصى لما هو مقترح للتفكير والتدريب المرتكز على الأسرة، فإن IFSP (خطة خدمة الأسرة الفرديّة)، توجه تقديم خدمات التّقييم. تقوم هذه المقالة بتقييم هذه الخدمات من أجل تحديد حدوث الإجراءات الروتينيّة المعترف بها والتي تُلاحظ كأساس لتطوير المنتج، وتحديدًا عندما يتلقى مقدم الرعاية الذي يقدم الفحص التدريب المناسب. بالإضافة إلى ذلك، تظهر نتائج هذه المقالة أن حوالي 50% من الأنشطة التي لوحِظت وحُدِّدت من مقدمي الرعاية على أنها غير مرضية، تُستَخدَم في تطوير النتائج. علاوة على ذلك، تُكتشَف روابط مهمة بين مقدمي الرعاية بوصفها روابط قوية بين الأنشطة والتحسين”.

الكلمات المفتاحية: مقدم الرعاية، الفحص، التقييم، فئات الإعاقة الثلاثة عشر

The international commitment to early intervention was the educational primary pact for conducting services for parents of, and infants with disabilities. This article presents the rationale as well as the strategies for early intervention in terms of empirical, realistic, and experiential findings. This article constitutes an important resource for all the professionals involved with at-risk infants as well as families of toddlers and young children having disabilities, in that it embraces the major issues present in early intervention. The first issue that arises is the recognition of the complexity of early intervention and its uniqueness as a domain for helping professionals. The second issue is the emphasis placed on the multidisciplinary approach to involve infants and young children with special needs. A third issue that stems from the need for a multidisciplinary approach and the complexity of early intervention, is the importance of individualization in the work with families. The latter is an issue that the researcher has effectively combined to simplify the important role of the Individualized Family Service Plan (IFSP). In the beginning, a caregiver needs to be certain that parents clearly understand why their child needs help.

 The focus is on helping the family develop its own strengths in the resolution of issues. Children are vulnerable to a number of issues and situations that can hamper both their cognitive and affective development. In fact, the outcome of underachievement is always described as performance below expectation. The reasons behind this, may include different aspects such as social isolation, pressure to conform, family dynamics, learning or behavioral disabilities, attention-seeking, trauma, and lack of direction or orientation (Cummings, R. & Fisher, G. 1991).

Complementing the above-mentioned issues, there are three correlated issues relating to development, family, and environmental context. Actually, researchers consider the development of the child as transactional in nature, of which outcomes are determined by shared exchanges between the child and the family all the time (Kranowitz, C.S. 1998). An additional explanation of the lively nature of development is the recognition of the acquaintance of the child and the family with the environmental strains. The importance of the family in the development of the child, along with the ecological settings of the child and the family are additional issues that invade this article and offer a basis for assessment as well as interventional activities and services (Feldman, M.A. 2004).

Moreover, the belief in the benefits of early intervention is now being recognized as a formal commitment to at-risk infants as well as families of toddlers and young children having disabilities. This article endorses such belief and offers a systematic approach to the implementation of theoretically rigorous and realistic interventions. The field of early childhood special education has come to be acknowledged nationally as a discipline by itself, with its own university and expert professional training and research programs, an active national professional organization, numerous professional journals of quality, and significant voices in the invention of a policy at the regional and local levels (Feldman, M.A. 2004).

Lastly, as the services expand, so do the need for comprehensive preparation of educators, therapists, psychologists, and health professionals who work with children under the age of three and their families. This fact is reflected in the increased number of university programs throughout the country that are confronted with the task of training teachers, speech and language pathologists, occupational and physical therapists, school psychologists, social workers, and program administrators, on how to implement the early intervention services (ثابت، م. وآخرون. 2012) Nevertheless, teachers and educators are already faced with the prospect of personnel shortage in early intervention. The primary factor that determines the quality in an early intervention program is the effectiveness of the professionals who work in it; and effectiveness is after all directly related to the quality of training.

Training and Preparation

It is the problematic of providing effective personnel’s training that this article is aimed at. It places a strong weight on typical and atypical child development, combined with an ecological vision of intervention. The article is organized on two basic grounds: 1) the early intervention professionals require strong preparation in the representative categorizations of development that the children experience from birth, and 2) that effective intervention must take an ecological perspective in order to understand the background of the infant’s or young child’s environment. Additional emphasis has been place on these two premises, thus the first question is dedicated to a developmental perspective whereas the second question is dedicated to an ecological perspective.

Generally speaking, this article lays the foundation for the discussion of developmental research and theory, assessment and intervention, besides addressing family needs. It is also reflected in the new highlighting of early intervention programs for infants from birth. First, the article begins with a review of certain issues relevant to the early intervention field, including the concepts of being at-risk and the least restrictive environment. Then, the researcher moves onto an updated review of typical cognitive, linguistic, physical, and social development.

     Furthermore, the article focuses on examining the role of assessment for infants with disabilities from birth until the age of three, covering the screening and traditional assessment procedures, and ecological assessment including information on developing an Individualized Family Service Plan (IFSP). The article is about children whose developmental patterns remain outside the “normal” range, those who have special needs, and those who require special care or intervention from birth until the age of three.

The essential thing about a special service plan is that it is a service provided to the child and the family. It is centered and devoted to present a suggested training in early intervention. Early intervention is attached by a solid and a unified theoretical base (Kranowitz, C.S. 1998). Such theories make the core value intended for early intervention on the child surrounded by his family, and the structures and motives that impact their lives.

In practice, it is recommended that outcomes of any family plan should be taken from family routines; on the other hand, it is required that the plan recognizes the great role of including main concern and priorities in outcomes. Besides, there is a great necessity to examine the family plan setting in order to control the degree in which caregivers use the daily activities to develop consequences. Another purpose for this article is to test the way caregivers can develop outcomes and approaches for early intervention. What is more, the article sheds the light on the very early intervention pointed at serving children at-risk of delays in development, and children with disabilities from birth till the age of three. It focuses on the importance of assessing infants and toddlers, taking into consideration the development and the characteristics of these children. Last but not least, this article gives rise to the important role of the family in the process of improvement of struggling kids, given that children at this stage are sensitive and parent- attached.

This article was directed by a theoretical and conceptual framework based on Bronfenbrenner’s Ecological Systems Theory, which is a theory of influence in the field of early intervention (Bronfenbrenner, 1979). This theory clarifies the connections between diverse social elements and the inclusive effect of these chains. In any family service, the ecological theory shows the development of the child within the child’s and the family’s environment.

Figure 1. Urie Bronfenbrenner’s Ecological Systems Model (1979).

Bronfenbrenner’s Ecological System’s Theory

This theory, as shown in Figure 1, defines complex “layers” of the environment, each having an effect on a child’s development. This theory looks at a child’s development within the context of the system of relationships that springs from the child’s environment. This theory has recently been renamed “Bioecological Systems Theory” to accentuate on the fact that a child’s own biology is the central environment operating his development. The collaboration between elements in the child’s development, his direct family/community environment, and the social setting energies and guides his development. Modifications or struggles in one layer will flow all the way through other layers. To observe and monitor child’s development we must focus at the child and his direct environment, and at the collaboration of the surroundings.

Bronfenbrenner (1979) defines these concentric layers as ascending from the center, where the child and his family are located in the deepest circle. There is another circle for the connections made by the child and his family; these connections are made of relatives, friends, neighbors, cousins and diverse related connections. Likewise, these preceding social units are encircled in a bigger system comprising of governments, and other systems that might probably have their effects on the child. Another vigorous standard of the Ecological Systems Theory is that any change in one of the units will surely influence the events in another unit.

Thus, to analyze the development of a child, a person should focus on the interaction of the larger environment concurrently.

Bronfenbrenner’s Ecological Systems Theory fosters the excellence and framework of the child’s environment for example economic rank, self- esteem, self-concept, and the main needs impact the support required for a family.

Adult Learning Theory

Since the emphasis of early intervention transcend the children, to the wider context of the family, the relation with adults is as vital as the interaction with children. Modeled by Malcolm Knowles in 1979 to clarify how adults learn, Adult Learning Theory is centered on the succeeding norms:

grown-ups are self-directed learners; gained knowledge and experiences contribute to the acquired learning of adults; the need to know more is the key for adult’s learning.

The main issue now is the acknowledgment of the roles of families as central and pertinent. Assessment and diagnoses are always shown as an ongoing process. It aims to “discover” with its interpersonal and intrapersonal learning. The assessor’s primary function is to facilitate learning and intervention (McGraw, 2004).

The identification of a child presenting a developmental delay or with a disability, changes the dynamics with other family members. It is at this time that the family needs assistance.

One of the central goals of a toddler and early childhood mental health services is avoidance and early intervention. Taking into consideration the challenges and the developmental paths needed for a healthy, emotional, and intellectual growth, a counselor should provide a valid context to work with infants, young children, and their families at an early age. By doing this, the counselor reinforces the necessary foundations for a healthy development and therefore, finds a way to intervene in order to address the emerging challenges before they become prolonged. Subsequently, the counselor redirects young children and their families on a healthier developmental path. The family has been recognized as a primary and critical component in the development of the child (Lawlis, 2004). However, early intervention as a new approach has faced a lot of challenges in getting the families that have appeared as having a child at-risk beyond the reach of most assessment programs (Lawlis, 2004). These families often refuse to volunteer for, or cooperate with such services. Another challenge has been to organize programs that are satisfactorily inclusive to help kids, young children, and families with all characteristics of their development. The truth is that all aspects of the child’s and family’s development are closely connected (Lawlis, 2004).

Providing comprehensive early intervention services for all infants, young children, and their families must be the goal of modern approaches to early intervention. Henceforth, it is important that such approaches be integrated into daycares and all backgrounds in which infants and young children and their families change. The approaches include non-stop educational chances for parents, caregivers, programs at daycare centers, and special programs for families facing difficulties. This article sheds light on how to implement the early intervention approach or the IFSP and explores how to work with families that are almost beyond the reach of most programs. A model will be presented for working with infants in their families, ranging from those who are progressing in a healthy manner to those with a variety of challenges. With the help of a work group, a caregiver should observe and record children’s early emotional signs in both healthy and compulsive cases, motor and cognitive processing differences, and infant–caregiver and family interaction patterns (Jordan, R. & Jones, G.1999). As a result, this group will construct a comprehensive approach to assessment, diagnosis, and intervention such as the IFSP.

This approach includes not only children with emotional and behavioral difficulties, but also children with autism spectrum disorders as well as other disorders of connecting and communicating, Dyslexia, language problems, Down syndrome, fragile X syndrome, fetal alcohol syndrome, cerebral palsy, and even severe forms of Attention-Deficit Hyperactivity Disorder (ADHD). Educators are now in a position where there is an urgent need to redefine how we work with these children. Because of that, the researcher chose this topic and presented a model of plan that is used in the USA and the UK for infants and toddlers, the IFSP. This model addresses the family’s relationship, because it is the cultural context in which the child’s relationships and emotional interactions occur. Intervention for infants and children with mental health problems and special needs must involve a broad relationship, family, and community-based approach, and should be covered in the IFSP.

On a side note, it is very urgent to validate such a service in order to use it in Lebanon since there is no direct service for children and toddlers below the age of three. The absence of such service was clearly noticed after field trips to the ministry of Education and Higher Education, The Ministry of Health, The Ministry of Public affairs, and The Educational Center for Research and Development (CERD). All of those ministries consecrate a special care for the people with physical disabilities more than disabilities on the educational and cognitive levels. However, it is worth mentioning that CERD gives a special attention for children with learning difficulties and learning disabilities from the age of three and above. To date, no research mentioned the toddlers in assessing them beyond medical tests and screening. However, there is no educational intervention to this target (infants and toddlers and their families).  CERD initiated a lot of studies and statistics concerning learning difficulties. First, they issued a article among the official schools of Lebanon to spot out the number and kind of disabilities found. This article was not followed by statistical tables because it was not easy to evaluate the difficulties found. They only mentioned that 25- 28% of the students present learning difficulties in a sample of six schools all around Lebanon. Only 6-7% have difficulties such as dyslexia (ثابت، م. وآخرون 2012). However, the article has only focused on pupils from the age of three until the age of nine. The CERD article recommended focusing on the evaluation of the learning difficulties at an earlier stage in order to get the early intervention services and integrating competences to help pupils with difficulties in an inclusive classroom. Moreover, the CERD article recommended avoiding labeling the pupils in the inclusive classroom by building self-esteem and preparing teachers to deal with the ones with learning disabilities using many strategies, for instance the multiple intelligences, learning styles, affective and social growth, growth psychology, teaching strategies, and cooperative learning.

Furthermore, The CERD published guidance for educators to spot out the learning difficulties and find solutions for them. However, one of the most important limitations of CERD’s article is the lack or insufficiency of the programs that target students with disabilities; they are only found in some private institutions.

Definitions

Caregiver. Early intervention is a special service used to appropriately allocate a caregiver for the child and his family. Countries differ in the technique they present this caregiver. Some use a model in which the caregiver does not offer any intervention service, whereas in other countries, the coordinator of the services may be provided by a special educator or speech therapist. For that reason, the caregiver performs as a helpful and experienced supporter and is accountable for supporting families in understanding and mastering their rights. Researches have proved that this relationship between families and the caregivers is essential towards effective early intervention (Feldman, M.A. 2004).

Moreover, the caregiver needs services in the fields of technology, health, therapeutic, nursing, nutrition, occupational therapy, physical therapy, psychology, social work, or speech therapy. In addition to the coordination of services, the caregiver applies and assesses the Individualized Family Service Plan (IFSP) or any other intervention plan.

Screening. Screening is a large scale and a procedure designated to determine the presence or absence of developmental problems. Screening is done with the purpose of identifying those infants or children considered at-risk, that is, those who will probably need special services to aid their normal development. Screening is usually quick and inexpensive (Feldman, M.A. 2004).

Assessment. Assessment is the process by which children are identified as having a special need or having any kind of disability and in need of special education services. Testing is not a synonym of assessment because a test may result only in a score, whereas a good assessment will provide much information effective in educational programming and individualized planning (Feldman, M.A. 2004)… Assessment is not so much a process itself, as it is more of a part of a process; the other part is intervention, without which the assessment is deemed useless. It is a continual and ongoing process in which children are examined continuously over most of the duration of their education. It can provide early indicators on the performance of children. It can also provide what has been learned or gained by a particular stage.

 

     Raising a child with a disability or illness is a journey filled with challenges on the personal and parental levels. Parents may experience a myriad of emotions, most of which are undesirable and uncomfortable. Parents will recalibrate their goals, their values, and their priorities in order to bring out the strengths they never knew they had. To begin with, neither of the parents knows anything about special needs nor on how to parent a special needs child. All what the parents know, initially, is that their world has been turned upside down and they need to seek professional help for their child, serving to provide, as well, a sense of understanding and orientation for themselves (Colorado, B. 2008). Their stories range from heartbreaking to heroic filled with hope, disappointments, and success. Families of children with disabilities face challenges in different forms given that each family is unique. Children with special needs require particular help more often, and for longer periods of time; sometimes, for their entire lives. Some of the familiar problems that children face, resulting in special needs, are now categorized by IDEA (Individuals with Disabilities Education Act (P.L.108-446)) as of March, 2013 (Ghazi, M. et al).

The 13 Disability Categories

 The IDEA defines the 13 disability categories. Similarly, the Lebanese Center of Educational Research established a dictionary for words related to the categories of the diverse learning disabilities (Ghazzi, M. et al). The categorization of the disabilities and their definitions are as follows:

Autism

Autism is a developmental disability, significantly affecting verbal and non-verbal communication, educational performance, and social interaction. Generally, autism is evident before the age of three, but not necessarily. Characteristics often associated with this disability, are engagement in repetitive activities and stereotyped movements, resistance to changes in daily routines or the environment, and unusual responses to sensory experiences. The term autism does not apply if the child’s educational performance is adversely affected primarily because the child has emotional disturbance, as defined in number four below.

2. Deaf-Blindness

It is a concomitant hearing and visual impairment, the combination of which causes such severe communication and other developmental and educational needs. Such needs cannot be accommodated in special education programs dedicated for children with deafness exclusively nor with blindness exclusively.

3. Deafness

It is a hearing impairment, the severity of which damages a child’s processing of linguistic information through hearing, with or without amplification, and that adversely affects the child’s educational performance.

4. Emotional Disturbance

It is a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree, that adversely affects a child’s educational performance:

(a) An inability to learn that cannot be explained by intellectual, sensory, or health factors.

(b) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers.

(c) Inappropriate types of behavior or feelings under normal circumstances.

(d) A general pervasive mood of unhappiness or depression.

(e) A tendency to develop physical symptoms or fears associated with personal or school problems.

The term includes schizophrenia. The term does not apply to children who are socially maladjusted, unless it is judged that they have an emotional disturbance.

5. Hearing Impairment

It is impairment in hearing, whether permanent or fluctuating, that adversely affects a child’s educational performance, but is not included under the definition of “deafness”.

6. Mental Retardation

It is a significantly sub-average general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance.

7. Multiple Disabilities

It is a concomitant impairment (such as mental retardation-blindness, mental retardation-orthopedic impairment, etc.), the combination of which causes severe educational needs. Such needs cannot be accommodated in a special education program dedicated for one of the impairments exclusively. The term does not include deaf-blindness.

8. Orthopedic Impairment

It is a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly (e.g. clubfoot, absence of some member, etc.), impairments caused by disease (e.g. poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).

9. Other Health Impairment

It is having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that— (a) is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, and sickle cell anemia; and

(b) Adversely affects a child’s educational performance.

10. Specific Learning Disability

It is a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or do mathematical calculations. The term includes conditions on the likes of perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.

11. Speech or Language Impairment

It is a communication disorder such as stuttering, impaired articulation, language impairment, or a voice impairment that adversely affects a child’s educational performance.

12. Traumatic Brain Injury

It is an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psycho-social impairment, or both, that adversely affects a child’s educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition, language, memory, attention, reasoning, abstract thinking, judgment, problem-solving, sensory, perceptual, and motor abilities, as well as psycho-social behavior, physical functions, information processing, and speech. The term does not include brain injuries that are congenital or degenerative, or brain injuries induced by birth trauma.

13. Visual Impairment Including Blindness

It is impairment in vision that, even with correction, adversely affects a child’s educational performance. The term includes both partial sight and blindness.

In a perspective to fulfill the requirements of individuals presenting any kind of disability, the following is required 🙁 الغزّي، وآخرون. 2014)

A specialized intervention at home or at school or in the community for the issue of delays in language, and physical, cognitive, or social development;

Regular medical treatments or interventions for health conditions;

 Individualized educational programs or plans for learning disabilities;

Extra care for daily living skills;

A special help to enhance communication;

Special therapies for improving physical strength and coordination;

Special therapies for emotional or behavioral problems;

 Special equipment to help increase movement;

Few years ago, there wasn’t much help and hope for children with special needs. Most of them suffered under-education, underestimation and undervaluation.  Nonetheless, time has changed and now we are increasingly aware, as a society, of the children’s right to be valued, educated, and challenged. Laws are being enacted to ensure the rights of people with disabilities. Furthermore, technology is rapidly advancing, medical help is improving, and professionals are enhancing their knowledge and skills (Sternberg, R. J. & Grigorenko, E. L., 2000). A wider range of services for children and their families is emerging, as parents are becoming more enabled supporters. It is a long and a hard way for parents, professionals, and children with special needs because all together they are creating a new kind of future (Sternberg, R. J. & Grigorenko, E. L., 2000).

How early intervention services are provided to the child and the family is as important as which service to provide. How services are applied is based on modern suggested training in early intervention. Early intervention is fenced by a resilient theoretic basis. The theories that form the basis of early intervention focus on the child as a learner in the frame of his or her family, and the factors that influence their lives.

Early Intervention

Early intervention comprises a set of supports, services, and experiences to prevent or minimize long-term problems, as early as possible. While it can be offered at any age, whether before or during the early stages of disabling conditions and circumstances, the term, however, is commonly reserved for infants and young children. Typically, children who receive this early intervention are both, those already suffering and at-risk. The risk might be developmental, emotional, social, behavioral, or school problems due to biological reasons (e.g. low birth weight) or even environmental factors such as poverty.

Early interventions and orientations are manifold. Some programs take into account that the child needs an extraordinary learning environment. They highlight on the crucial role of the parents and home in shaping the child’s future. Therefore, such programs offer several types of family-based intervention including case management, family support, home visits, and parent’s education. These programs, then, target the needs of the family as a whole and study the effect of early intervention on other family members (Peters, 2000). Under the IDEA, “infants and toddlers with disabilities” are children from birth till age two who need early intervention services, and that because they are experiencing developmental delays in one or more of the following areas: cognitive development, physical development, communication development, social or emotional development, adaptive development, as assessed by suitable assessment tools and procedures; or they have a diagnosed physical or mental condition that has a high possibility of resulting in developmental delays.

Individualized Family Service Plan

The Individualized Family Service Plan (IFSP) is addressed to support families in the improvement of results of their child. The IFSP works as a method to monitor supports and abilities for each child. It should be established by the family with the help of a multidisciplinary team to articulate information affecting the child and his or her family, taking into account many elements. The first element is a report of the child’s current stages of cognitive, physical, communication, social, and emotional development. (Hammill, & Bartel, 1978).

Contemporary levels of cognitive development include a varied selection of mental capabilities or intelligences. The current level of cognitive development includes reports related to attention, memory, critical thinking, communication, and reasoning. Reports of physical development include vision, hearing, and other health issues adding to the motor skills of the child. Motor skills are made of two groups; large motor skills for instance climbing, walking, crawling, and rolling; and fine motor skills such as cutting, pinching, and holding small things. Moreover, contemporaneous levels of collaboration and social/emotional development need to be observed and reported including speech, gestures, and facial expression in order to observe verbal and non-verbal ways of communicating. Such development includes satisfactory ways of interacting with peers, siblings, and family members. Briefly, the development contains all the other domains like self-care or self-help skills as a demonstration of age-appropriate skills. These skills can include dressing, eating, toileting, and suitable autonomous working.

A supplementary prerequisite of the IFSP is a record of the family’s resources, related to improving the development of the child. Plans of explicit early intervention services must contain the regularity, strength, interval, and technique of providing these services. The beginning of services, and the person in charge for service coordination, as well as carrying out the plan are also stated on the IFSP. (Rapp, W. & Arndt, K. 2012). Additionally, the plan must also include the steps to take in order to involve the toddler in the preschool or other appropriate services.

Once prepared, the IFSP team should meet at least twice yearly to notice progress and provide revisions based on assessments, and other related information. Also, the IFSP should be revised with the family once every six months. Finally, the early intervention team must clarify to families the constituents of the IFSP and get families’ confirmation for those services.

At-Risk Children

The term at-risk is normally used to include children and youth, and has a resilient innate meaning. However, the term has no reliable definition and can be observed by branding certain groups. The progressive side of this undetermined definition is that program providers have some flexibility in how they define “at-risk” for their programs. Regardless of this flexibility, it is still important to have a standard or a reference point for vibrant communication between providers, funders, policy makers, and the media about what “at-risk” precisely means. Some would debate that all children are at-risk some way or another, while others highlight that some children encounter greater risks than other children do. For example, children may qualify as at-risk if they already present a certain disability, or have been abused. On the other hand, some would argue that one should not describe children themselves as being at-risk, but rather the environment in which they grow. For instance, one can say that the family, as a whole, is at-risk.

Principally, families are the most critical setting for the development of children, and family risk factors, such as poverty, low parental education levels, have been regularly found to challenge children’s development.

A third approach would focus on the community, neighborhood, or school background as an at-risk environment. For example, a low-income community with a high crime level and a low high school level might be viewed as a place that puts children at-risk of poor outcomes.

Maslow’s Hierarchy of Needs

Maslow’s Hierarchy of Needs is a pivotal theory used to train many in the domain. According to Maslow, some needs are more important than others and must be met before anything else.  The parents have to meet basic physiological and security needs that are placed in first priority. Until they find stable housing and can meet needs for food, health care, and other daily living necessities, parents will most likely not be able to focus on higher order achievement needs on the likes of engaging in early intervention (Thompson, Ch. L. & Henderson, D. A.). Such approach does not indicate that intervention is unimportant; it only explains that other, more serious needs must come first. Maslow’s theory (1954) is built on the supposition that individuals have inside them an inherent hierarchy of needs as presented below in Figure 2.

Fig. 2. Maslow’s Hierarchy of Needs

Beginning from the lowermost, the classifications in the pyramid are physical requirements, security requirements, community requirements, appreciation requirements, and self-actualization needs. The most basic needs are placed at the bottom of the hierarchy such as food, water, and sleep. People move up the pyramid when needs in a previous level have been met. Consequently, when physical needs are satisfied, it becomes likely to transfer to the upper level of needs, safety. Succeeding safety needs, social needs must be addressed like love, belonging, friendships, family relationships, and ties. Next, esteem needs and self-actualization needs. In some situations, an individual might not be able to stay in one level for the reason that a need in one of the lower levels is demonstrated.

Families and Early Intervention

In the United States, the main duty of families in early intervention changed since the beginning of families in early intervention guideline. Families are the main debate of the Federal Early Intervention Law for young children with disabilities. By emphasizing on the family in Part C of IDEA, law gave another definition for the family members as receivers of services in acknowledgement of their serious role in a child’s development. Conversely, services have not always mirrored this probability (.(أبو سعد، أ. 2014

Development of the IFSP is a dynamic process that involves a collaborative planning effort and partnership between the parents or caregivers on one side, and the professionals on another side, who will deliver the services and supports to the infant or the toddler along with his or her family. It is intended as an ongoing process of planning and adjusting services to keep up with the changes in developmental needs. The IFSP should be reader and user-friendly, easily read and understood.  Moreover, cultural values and believes should be respected and considered in the IFSP since it is addressing families as a family-centered approach.

Family-Focused Approach

Depending on the specific orientation of family systems, this approach has a variety of goals. Historically, the starring role of the family has improved after involving families in individualized plans. Families form an interconnected part of the mediation service group. Specialists and families cope together to regulate and improve the development of the child. Though, families request the professionals’ advice and guidance to meet definite needs. The central consideration is regarding what is in the best interest of the family (Chapman, G. & Campbell, R. 1997). Outcomes are evaluated on the basis of the particular orientation of the professionals. On behalf of various experts, the swing from expert-focused, to family-focused services challenged their training, and produced an upsurge in the need for family involvement in the planning. In all the family approaches, change needs to happen relationally and not just physically (Chapman, G. & Campbell, R. 1997).

          Studies designate that the family-centered approach leads to superior products for children than the outdated child-centered methodology. Indeed, family-centered approaches practice representations that introduce early intervention centering on the child surrounded by daily backgrounds and connections. Studies have shown that there is a higher level of parents’ participation when using family-centered practices, and a higher positive impact on the child. Such impact will positively influence the outcomes (Sears, W. & Thompson, L, 1998).

The Four Stages of Adaptation

Some parents who have kids with disabilities experience many stages in the journey of adaptation. In the discussions with parents of children with special needs, the researcher noticed that they experience many stages in their journey. There were distinct changes in all the parents’ sense of control over their lives, their increased self-confidence and skills in their parenting roles, the balance of their lives, and their attitude about the future. The four stages of adaptation are surviving, searching, settling in, and separating (Woznick, L. & Goodheart, C. D. 2002).

Surviving

Surviving is what you do, as a parent, to keep going when you are feeling completely helpless, because something totally out of your control has taken away your child’s equal chance at life. Surviving is different for everyone; it may last a week or even years. Some of the feelings may stay for a lifetime; some may be accompanied by expected events of unexpected memories. Surviving is reacting and coping, and it involves a lot of feelings that may include fear, confusion, guilt, blame, shame, and anger. Parents may experience different feelings at different times. There is no right way to get through this stage, but there are some things the parents can do to alleviate it. First, the parents have to understand that these feelings are quite normal. Then they must take care of themselves during this period and use support networks such as counselors, friends, or family members. They pass through this period of surviving in their own way and on their own time. There are a lot turning points for the parents to remember, for instance the formation of a sense of control, optimism, and hope after a certain period of time. Such formation takes place when the parents admit that they have to survive. As a matter of fact, to admit “They have survived”, is to say “They have overcome”; Parents’ survival is to move ahead with life with purpose, energy, and sense of trust that whatever happens to their family, they will somehow find a way to deal with it.

Everyone survives in different ways, some parents may know that their child would have special needs even before he was born, for example from pregnancy diagnoses. While some parents may know that their child is going to have special needs directly after birth as a result of injury or illness, other parents may know gradually, one step at a time, as the child shows signs that something is not going right. Some parents may notice delays in learning or development, unusual behavior patterns, or continuous illness. But more importantly, the nature of the child’s special needs and their level of severity do not make it any easier or any harder to deal with. Having special diagnoses may not make it harder to just knowing that the child is at-risk or is slow to develop. When and how the parents learn that their child has a problem does not make the process of adaptation easier or harder. Basically, the attitude of the extended family, the cultural group, or even the religious beliefs may affect whether the adaptation will be easier or harder. There is no perfect way or right way of getting through this beginning stage. When parents become aware that their child has a problem or is at-risk for a problem, they begin to deal with this issue in two ways, coping and reacting.

Coping.

Coping is the process of managing the issues that come the parents’ way. Sometimes parents may feel like they are trying to empty a flooding ship with one bucket. They may have to make decisions without feeling confident about them. Plus, they may have to deal with specialists to whom they are unacquainted, who may give recommendations and advice that sound unfamiliar. Coping with all of this, is not an easy task but parents have shown ability to handle it even better than they guessed they could (Ricci, I. 1997).

Reacting.

Reacting drains energy and decreases feelings of control over own life. Until a certain time, parents of children with special needs, will not possess any sense of direction over their lives. They are always trying to figure out what is going on and what to do next. Their reactions may range from confusion, to fear, to incompetence and may be accompanied by feelings of grief, anger, guilt, and helplessness. These are the ways that many people feel, usually, upon hearing sad or frightening news. A parent with a child with disability probably experienced all of these feelings combined. Most of these feelings get resolved or fade as the parents find themselves ready to move on and as they begin to feel that they have control of their lives once again.

Surviving begins with a state of shock which is a normal reaction to a traumatic or major loss as in death or disaster. Shock is a psychological reaction to protect the body and mind from being overwhelmed (Cunningham, C. 2016). Surviving is an intensely personal journey. No one can exactly understand what it is like for the parents. Sometimes, they may feel like a helpless, incompetent victim. They may feel drained and lifeless, with a lot of loneliness.

          Sadness is a normal emotional reaction to events, thoughts, stories, or memories that remind a person of a loss. He may feel sad about changes he is doing in his life or thoughts about what his child might not be able to do, or how will he tell the news to his friends and relatives. Sadness comes and goes and sometimes might lead to depression. Depression is a chronic mood state that may affect eating or sleeping when a person feels like the problem will linger. A state of confusion, chaos, uncertainty, ambiguity, fear, as well as worrying, guilt, shame, and embarrassment appear while trying to adjust and adapt to the new situation. These are called toxic emotions and on a more serious note, might lead to suicidal anger (Goleman, D. 1996).

          At some point, there is a turning point from surviving to searching. This stage is filled with anger that can take many forms, starting with the general anger of taking it personal, to anger more specifically directed at someone in the form of blame such as a blame towards the hospital, towards the person who diagnosed or omitted to diagnose, or even towards the child. Resentment and envy are normal forms of anger at this stage where the parents make comparisons with normal children. Then a feeling of betrayal leads to conscious or unconscious denial as a protective device that the mind uses when a person is not ready to deal with problems.

Searching

          Searching is the second stage of adaptation. Parents will probably have periods of searching during their whole lives with their child. There are two kinds of searching; outer searching and inner searching. Outer searching begins with the first questions about the child: “what is wrong? Can it be fixed?” Outer searching begins while parents are still surviving. It consists of looking for a diagnosis and for services.

          Some parents feel incompetent towards, and frightened from the new challenge; others, conversely, feel motivated, energized, needed, and fulfilled. But what is certain is that almost all feel an exhausting conflict and mixed emotions. Since every parent is different, there is no right way to feel, and many feelings have the ability to change the life direction and philosophy of the parents. Searching is an incredible journey that begins while parents are still struggling with the issues of surviving. For the purpose of properly taking care of the child and finding the appropriate help and intervention that cannot wait, parents must rapidly resolve all of the feelings and questions they are dealing with. This stage is the stage of mastery and direction towards the appropriate solution after diagnoses. Parents need to label the problem so that it becomes easier to understand it and treat it. This will also help in stereotyping and setting certain expectations of what the child may or may not be able to do. Searching gives strength and new awareness of special needs and the way they are treated in society. Besides, it connects the parents with other families with similar problems. A feeling of empowerment will arise as the parents feel more competent and successful while facing the frustrations of dealing with barriers. But nonetheless, searching is filled with mixed feelings of success and failure, hope and despair, and accomplishment and frustration (McGraw, Ph. 2014). In the process of searching, parents ask a lot of questions in order to rest assured about their children. Some of these questions are:

Can I be a good enough parent to meet all of my child’s needs?

How will my child’s disability affect my relationships?

How will my child’s “special needs” affect my other children?

How will these circumstances affect the desire or ability to have more children?

Who can I understand what I’m going through?

What if my child grows up and cannot be independent, get married, or have children?

Will my child be able to go to school and have friends?

Will my child be normal, healthy, and happy?

Who will take care of my child if something happens to me?

Will I ever stop worrying about all of this?

After asking all these questions and struggling with answers parents realize that there are no quick cures or easy solutions and some of their questions do not, and will never have answers. Thus, searching will never stop but it will develop into a state of peace of mind and that will be the turning point between searching and settling in.

Settling In

          Settling in is the third stage in the adaptation process. It is a time of more predictable, settled-in living even if a person is still busy in searching issues. It is the stage of integrating a child’s special needs into the rest of the parents’ lives, and the stage of establishing a new sense of stability and harmony for the entire family. It is a shift in attitude, balance, and control as well. During survival, most of the energy is spent on coping. Some parents stay in the surviving stage for a longer time. And as the emotions felt in the searching move into the background, the parents settle down.

Separating

          Separating is the fourth and last stage of adaptation. The process of separating includes both emotional separateness of the parents and children, and physical separation that may occur when a child has special needs. Separating begins at birth, since every step towards growth is a step towards independence and separation. However, the daily, small experiences children need in order to practice being independent in a safe and protected way, may not happen easily for the child. Separation for children with special needs often has to be initiated, planned, or supervised by the parents. The child may have to learn daily living skills in small steps with a lot of arrangement. Moreover, the child needs self-discipline because his parents will not always be the lifeguards and rescue squads. The child needs to know his strengths and weaknesses and needs to know the importance of self-regulation. The most important of it all, is that a child should understand his disability and learn how to fight his own challenges.

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[1] Student in the Doctoral School of Literature, Humanities, & Social Sciences in the Lebanese University, Education. Email: nadine_1771@hotmail.com

طالبة في المعهد العالي للدكتوراه في الجامعة اللّبنانيّة- الآداب والعلوم الإنسانيّة والإجتماعيّة – قسم التربية