PARENTS OF CHILDREN WITH EXCEPTIONALITIES

Course Objectives fundamental legal responsibilities for educating students with disabilities collaborative strategies for designing individualized programs for students with disabilities

Bruder Quote Every child is a member of a family (however it defines itself) and has a right to a home and a secure relationship with adults.

WHO/WHAT IS THE FAMILY? The family is the primary and most powerful system to which a person ever belongs (Minuchin, 1974)

Ways of Viewing Families Sociology Psychology Anthropology History Economics Political Science

Ecological Approaches to Families Bronfenbrenner ecology of human development Barker ecology of behavior settings Thurman ecological congruence

Bronfenbrenner Microsystems Mesosystems Exosystems Macrosystem

Barker One or more standing patterns of behavior Not dependent on the individuals Unique and stable characteristics that persist even when individuals in a setting change Milieu Physical features of a setting

Thurman Deviance Behavior/characteristic outside the norm Socially constructed based on beliefs/values Competency Functional behavior ability to perform tasks Tolerance

Why an Ecological Perspective? Multiple factors affect families. Systems are dynamic and change. Look beyond the immediate issue to explore other factors that may prevent, discourage or encourage certain actions on the part of the family.

Sociological Perspectives Social Conditions Science and Technology Climate and Natural Resources The Human Environment Location in Time Generations Stages and Transitions Location in Place

Families and Professionals: Eight Major Roles Parents as the source of the disability Parents as organization members Parents as service developers Parents as recipients of professionals’ decisions Parents as teachers Parents as political advocates Parents as educational decision makers Parents as collaborators

Parents as the Source of Disability Eugenics Movement ( ) To eliminate or reduce the number of “unfit” parents. Yielded laws that restricted marriage and required sterilization of persons with intellectual disabilities “professional blaming” behavior and autism Avoid blaming parents!

Parents as Political Advocates PARC vs. Commonwealth of Pennsylvania (1971) Education for All Handicapped Children Act (1975) Five amendments to EHA (1978, 1983, 1986, 1990, 1997)

Parents as Educational Decision Makers Directly related to EHA of 1975 Grants active decision making to parents of children with disabilities Recognizes the critical role that families play in the lives of children Parents often are passive rather than active participants Motivation Knowledge and skills Educational system often inhibits rather than facilitates partnerships

Families Characteristics Size and Form Cultural Background Socioeconomic Background Geographic Location Personal Characteristics of Family Members

Size and Form What do you know of families in which people, not related by blood or marriage, function as family members? What experiences have you had, either from your own family or through observation, that affirm or refute what you have read?

Cultural Background What is culture? What culture helped to form you? How does culture contribute to the development of personal values and beliefs?

Socieconomic The essential living expenses of families with children, such as housing and utilities- food child care- health care transportation- taxes clothing, personal care, household items

Geographic Location Access to services Medical Educational Social work Therapeutic Etc. Level of training for professionals Collaboration Consultation Teaming

Personal Characteristics Mental and/or Physical Health Coping Styles Passive Appraisal Reframing Spiritual Support Social Support Professional Support

Values Exercise Where are you on the moderate to high continuum? Individualism System Centered Taking Charge Collectivism Relationship Centered Acceptance/Tradition

Qualities Rooted in Values Broad-minded Cheerfulness Equality Exciting Life Independent Logical Loving Security Social Recognition

Family Family Hardiness Sense of control Commitment to becoming actively involved Recognition of an opportunity to grow and develop as a parent

WORKING WITH FAMILIES

Points to Remember The way a parent handles the disability is viewed in the following contexts Cultural Social Psychological How would you respond, given relationship building tenets?

Family Functions Think about your own life. What roles and needs must you negotiate to fulfill your various responsibilities and life choices?

Family Functions Affection Self Esteem Spiritual Needs Economic Needs Daily Care Socialization Recreation Education

Family Functions Consider the three functions most important to your family today? Who in your family is responsible for those top three priorities? Which functions are strengths in your family? Which functions are most stressful for you now? What three functions might be most important ten years from now?

What do families “give-up” when there are significant daily care needs? How would your involvement in socialization or recreation activities change if you were suddenly confronted with a mobility challenge? How does this affect the families you encounter in your work?

TIME AS A FACTOR Families who have a member with a disability have a moral obligation to meet that member’s needs to the greatest extent possible, even if it means that the family’s other responsibilities are not met or take second place.

Attributes of Family Friendly Relationship Building Empathy Empowerment Effective Collaboration The relationship based approach builds on developing a connectedness between the family and the help-givers Listening to, understanding, and responding to information

Questions to Consider How might affection behaviors differ because of cultural factors? What conditions enhance or threaten self-esteem? Are individuals with disabilities fully included in religious groups? Does the economic function influence the quality of life?

Tenets of Relationship Building Services Concrete assistance Emotional Support Developmental guidance Psychotherapy Not in the sense of treatment But in the sense of treating the family as a psychological unit