EDU 221 Chapter 9 Partnership with Families Parents of exceptional children are in no sense more "ready" than any other parents for the demands for change.

EDU 221 Chapter 9Partnership with Families

• Parents of exceptional children are in no sense more "ready" than any other parents for the demands for change and adjustment that confront them with the birth of their child. Still, they are often expected to be superhuman beings with little or no guidance to suddenly cope with strange and confusing feelings regarding themselves and their child.(Leo Buscaglia, 1994)

Working with Families of Children with Special Needs

• Most parents know their child’s strengths & needs.

• Promoting the child’s independence at home, in child care, & in the community is an important focus of families & child care programs.

• Individual goals for the child should be useful in the child care & home settings.

3.4

Serving Families

Family-Centered Focus

• Theories of child development tout it and IDEA mandates it - the family's needs must be at the center of early intervention services.

• Strategies and programs must facilitate family involvement. To do so, we must understand the diversity of the families in our society today.

• Today's early childhood professionals must learn how to work with families as individuals, how to communicate with families effectively, and how to develop cultural self-awareness to understand the ways our own beliefs influence our work (Allen & Schwartz, 2001).

• No matter the family makeup, families with children with disabilities will be impacted.

Parent Responses to News of a Child’s Disability

• “This can’t be! No one in my family ever had mental retardation.”

• “Perhaps I should have eaten different foods when I was pregnant.”

• “What does this doctor know? The child seems okay to me. Let’s go see someone else.”

• “Is there something wrong with my baby? The doctor keeps saying everything will be just fine. Why won’t she talk to me about this?”

3.1

• All families with children suffer from stress, but families with children with disabilities are under greater stress. Some will adapt and grow closer; some will not adapt and the family will fall apart.

• Although most research about families is actually about mothers of children with disabilities, we must consider the impact on the whole family - fathers, siblings, grandparents, and other extended family members.

• Research suggests that children with disabilities are more at risk for abuse than typically developing children.

• Appropriate, adequate, and accessible supports are important to ensuring the well-being of families with children with disabilities.

Families do not expect to have a child with a disability.

• Welcome to Holland

Leo Buscaglia (1994) describes the feelings of

parent of the child born with disabilities:

• Initial shock - correlated with the degree of severity of the disability or the parents' initial understanding of the severity.

• Mourning period - the perfect child they anticipated is not coming and the realization brings deep pain and hopelessness.

Grief Process

• Elisabeth Kübler-Ross, M.D. (July 8, 1926 – August 24, 2004) was a Swiss-born psychiatrist and the author of the groundbreaking book On Death and Dying, where she first discussed what is now known as the Kübler-Ross model

• proposed the Five Stages of Grief as a pattern of phases, most or all of which people tend to go through, in sequence, after being faced with the tragedy of their own impending death.

Five Stages of Grief

• The five stages of grief, in sequential order, are: denial, anger, bargaining, depression, and acceptance.

•The five stages have since been adopted by many as applying to the survivors of a loved one's death, as well.

Five Stages of Grief • The stages are:

• Denial : The initial stage: "It can't be happening."

• Anger : "How dare you do this to me?!" (either referring to God, oneself, or anybody perceived, rightly or wrongly, as "responsible")

• Bargaining  : "Just let me live to see my son graduate."

• Depression : "I'm so sad, why bother with anything?"

• Acceptance : "I know that I will be

in a better place."

Five Stages of Grief

• Kübler-Ross originally applied these stages to any form of catastrophic personal loss (job, income, freedom).

• This also includes the death of a loved one and divorce.

• Kübler-Ross also claimed these steps do not necessarily come in order, nor are they all experienced by all patients, though she stated a person will always experience at least two.

Pearl Buck (1950) wrote in The Child Who Never Grew of her

first feelings when learning her daughter was born irreparably

mentally retarded:To learn how to bear the inevitable sorrow is not easily done. I can look back on it now, the lesson learned, and see the steps; but when I was taking them they were hard indeed, each apparently insurmountable. For in addition to the practical problem of how to protect the child’s life, which may last beyond the parent's, there is the problem of one's own self in misery. All the brightness of life is gone, all the pride in parenthood. There is more than pride gone, there is an actual sense of one's life being cut off in the child. The stream of the generations is stopped. Death would be far easier to bear, for death is final. What was is no more. How often did I cry out in my heart that it would be better if my child died! If that shocks you who have not known, it will not shock those who do know. I would have welcomed death for my child and would still welcome it, for then she would finally be safe.

Parents’ feelings

• Blame - most mothers wonder what they did wrong during the pregnancy, giving rise to strong feelings of self-recrimination, condemnation, and guilt.

• Shame - worry about what others think that lead to feelings of unworthiness, sinfulness, and disgust.

• Feelings of fear - naturally we fear what we do not understand, what the future holds for the child with disabilities, the child's safety and happiness.

Helen Featherstone (1980) describes one

mother's fear for her child's future:

Sometimes I think I will die from hurting to think of his future without us. For now he has love, good health, happy times and lots of work (therapy) to do. What does he have to look forward to if he cannot improve, but a bed with bad smells and only dimness of life around him? (Golden, 1974)

Parents’ Feelings

• Feelings of uncertainty - the results for their fears.

• Feeling the need for overcompensation - feign joy and well-being to prove their strength

• Defense mechanisms - acceptance of feelings or denial

• Featherstone (1980), a mother of a child with disabilities, concluded that adjustment or acceptance of a child's disabilities is not a linear process.“Actually the process is more complicated than this. Contradictory feelings continue to coexist in our consciousness...Few parents reach an emotional promised land; most have good days and bad days. They solve one set of problems only to uncover another. Insight comes without blotting out confusion and regret.”

Parents’ Feelings

• Parents need help working through feelings.

• Almost immediately they must make urgent decisions and solve complicated problems.

• These problems may be compounded by social isolation and poverty, putting the family's well-being at greater risk.

That the family needs to be at the center of early intervention is imperative. Even more so is the need to empower and enable families without taking away their ability to cope.

• According to Allen and Schwartz (2001), "early intervention aims to support and build on those things the family already does well...by providing families with the information and skills that will enable them to try to solve their own problems and meet their own needs. The service coordinator plays the pivotal role in fostering and overseeing the empowerment of families."

• Enabling families means creating opportunities for family members to become more competent and self-sustaining with respect to their abilities to mobilize their social networks to get needs met and attain goals.

• Empowering families means carrying out intervention in a manner in which family members acquire a sense of control over their own developmental course as a result of their own efforts to meet needs.

Whether a service coordinator, teacher, or community-based childcare provider, your relationship with the parents of a child with disabilities is very important.

• Parents and professionals are partners in the child's development and learning.

• Professionals approach parents the same way they approach children: with respect and appreciation for individual differences.

• When parents and professionals communicate, children experience a better learning environment.

“Be proud of your child, accept him as he is and do not heed the words and stares of those who do not know better. The child has a meaning for you and for all children. You will find a joy you cannot now suspect in fulfilling his life for and with him. Lift up your head and go your appointed way.”

(Pearl S. Buck, The Child Who Never Grew)

Confidentiality

Q: Why must confidentiality be maintained?

A: It is the Law

Q: What information do children & their families have the right to be kept private?

A: The results of formal & informal assessments

3.5

Confidentiality

Q: Who should have access to information about a child & family?

A: Anyone who is responsible for planning & providing services to the child & family

Q: Who should not have access to information about a child & family?

A: Anyone who is not responsible for planning or providing services to the child & family

3.6

Guidelines for Services that are Responsive to the needs of Families

• Take time to get to know the family

• Create a variety of opportunities for sharing information

• Recognize the importance of the family as the major constant factor in the child’s life

• Respect and accept family diversity

• Be nonjudgmental and sensitive toward the family’s emotions

• Respect confidentiality

• Design flexible services

• Do not expect to meet all of the

family’s needs.