Term Paper on "Interview Family Member of Someone With a Disabled Child"

Quoted Instructions for "Interview Family Member of Someone With a Disabled Child" Assignment:

assignment: interviewing a family member around family issues

There are many articles in the popular press and in professional journals (as well as whole books) devoted to what happens within families when there is a family member with a disability. The assignment is to find and read at least three articles/books (or chapters from a book) and state the references for whatever is read. Then, using what the read material including the following material, please interview an adult member of a family in which there's a son/daughter (any age) with a disability.

This interview should relate to the Southern Massachusetts area if possible.***

The interview should address the following questions, and you are welcome to ask additional questions that may interest:

1. What, if anything, makes your family (with a member with a disability) different from other families?

2. What is the most significant challenge faced by your family/you?

3. How have you tried to cope with this challenge?

4. What's the greatest joy/success you've experienced around your family member with a disability?

The interview should include the questions asked, the responses, and the referenced citations. Feel free to disguise the family in whatever way you feel will best protect their confidentiality. Conclude by including a summary of what was learned about families from the interview.

The following is additional and critical info to be related and integrated into the assignment:

family dynamics, loss, resilience and integration

I've organized below some points to guide you in your thinking about the issues families with children with disabilities face. They're intended to highlight some of the special concerns that such families have and to indicate some general ways that families cope.

• The presence of a chilld with a disability creates special challenges for the family, both practically and emotionally.

• The child’s development and his/her success in participating effectively in day-to-day life are directly related to the ability of the child’s environment to adapt to his/her special needs.

• At the center of the child’s world is the family. We need to understand the dynamics of the relationship between the child and the family to help the family cope in a flexible, adaptive way.

• The family is an interactive unit and what affects one member affects all members. The physical, social and emotional functioning of family members is interdependent, where changes in one part of the system are reflected and echoed in other parts of the system.

• There are not always interventions or treatments that "cure" the child’s disability. Helping the family to understand this, as well as helping famiy members and the child to find interventions to maximize the child’s development and growth, is an important goal.

Important Points

• Different families respond to the presence of a child with a disability in different ways – the severity of the child’s disability may not predict how families react or cope. Many families often report positive benefits to having a child with special needs in their lives; it is not necessarily a terrible tragedy.

• It is important to understand what each individual family is experiencing and not rely on generalizations. Most families want what is best for their child and most families strive to adapt and cope.

• Learning that a child has a disability constitutes a crisis and a loss for the family; the loss of the hoped for/dreamed of child. Feelings of guilt, anger, sorrow and shame can often arise. Families grieve this loss, and it is a normal process as they adapt to the presence of a child with a disability in their lives.

• The concept of resilience is an important one and is less pathologizing than older notions of the "chronic sorrow" that was thought to be a perpetual emotional state for such families. Resilience refers to "the ability to recover from adversity and adapt to change and to demonstrate competence in the face of a known risk." (Patterson, 1991).

Factors that Affect Families with a Child with special needs

• Child’s Language/Cognitive Delays – developmental and communication delays create difficulties for reciprocal communication between parent and child and difficulty knowing what the child needs or wants.

• Behavior Problems – can often be a result of the child’s frustration and/or communication problems. Behavioral problems can be exhausting for families to manage and at times embarrassing if they occur in public.

• Lack of Play Skills – children learn through play. If they are not playing they are likely not exploring their world or learning as would be expected. Play is important for development. They may not amuse themselves well and may require extra supervision and input which can be draining for parents and siblings.

• Social Deficits – the inability to interact and develop peer relationships - often leads to isolation. It can be painful for parents to see their children remain lonely and without friends. Making and keeping relationships is a very difficult set of skills to teach, which makes it hard for parents to know how to help their child.

• Lack of Emotional Attachment – some children may not bond with parents. There may be a sense of "connectiveness" missing. This can be painful, as bonding with the child is a primal, human need. Parents may feel they cannot bond in return, which can cause feelings of anger, guilt and sadness.

• Complicated Medical Problems – some children with special needs have complicated medical problems which require care at home. Parents often administer treatments which can be painful for the child. Some have in-home assistance (from a Personal Care Assistant, for example) which means family privacy may be intruded upon on a regular basis.

• Poor Self-Help Skills – children with special needs can have feeding and/or motor problems and/or cognitive problems which prevent them from being independent with daily tasks such as toileting, dressing and bathing. Families often need to help children with these tasks which can be time-consuming, expensive (e.g. diapers for older children) and physically challenging.

• Poor Sleeping Habits – some children with special needs have sleep disorders. They may not sleep through the night, they may sleep at odd hours of the day or they may sleep very little. This can be exhausting for parents who may be up with their child until the wee hours of the morning. Parental and familial fatigue can be a significant problem.

Ongoing Questions/Concerns that Families Have

• Dealing with a child with a disability/special needs is a life-long process. Families have new questions and concerns that arise as they and their child pass through different developmental stages. Concerns around what to tell family members and friends about the child, what to tell strangers, and whether to have more children often arise in earlier phases of receiving and adapting to a diagnosis. As the child grows, parents often have concerns about educational programming, socialization/peer relationships, continued dependency, sexuality, vocational training, financial planning and what will happen to the child after the parents die.

• Professionals can be helpful in understanding that old sorrows and concerns can resurface s the child faces new developmental challenges or life stages. A listening ear, concern, advice and information about resources can go a long way to supporting a family as they face life with their child. If you'd like to read about stories from parents of children with disabilities, the Web is a good source. One place to start is a Web site called the Asperger's Connection, where there are very short "courses" that address different elements of Asperger's syndrome; one of them addresses parenting.

loss, resilience and generalization

Families that have the greatest success in adapting to the changes that a child with disability brings are those that develop resilience, the ability to cope, adapt and accept whatever situations they must face around the child and the disability. Here are some characteristics of resilient families, as well as some suggested strategies to assist them in developing resilience. You may notice some evidence of some of these as you spend time with a person with a disability over the semester. I've included the strategies not because I expect that you will be in positions to promote family resilience, but rather so that you'll see how providing particular kinds of support can make a significant difference in the way families handle being families. This is taken from Joan Patterson's article, Family Resilience to the Challenge of a Child's Disability, published in the journal Pediatric Annals, 20:9, September 1991.

Nine Aspects of Resilient Families

Resilient families are those who have been able to cope and adapt to the presence of a child with a disability and who demonstrate abilities in certain areas. We can help families become more resilient by supporting and encouraging them in these areas.

1. Balancing the Disability with Other Family Needs – the child with the disability as well as other family members (parents and siblings) get their needs met. In families that are less resilient, the entire world revolves around the disabled child and others’ needs are minimized or dismissed in favor of the disabled child.

2. Maintaining Clear Family Boundaries – resilient families maintain a sense of who is in charge, i.e. the parents are the parents and the children are the children. Parents are in control and set limits. Other caregivers (e.g. home nursing, physicians) are part of the family’s network but do not become an inappropriate member of the family.

3. Communicative Competence – family members are able to tell people what they need in a way that gets their needs met in a non-confrontative, easy manner. They are able to let caregivers know what they need and are able to communicate dissatisfaction in an appropriate, constructive manner.

4. Attribute Positive Meanings to the Situation – having a child with a disability can challenge a family’s belief in a just world. Resilient families often report finding new meaning in life or personal growth due to the presence of their disabled child.

5. Maintaining Family Flexibility – resilient families are able to adapt to challenges and respond flexibly to new demands and requirements for the child or other family members. While structure is important for healthy family functioning, rigidity is not. Resilient families maintain family structure but do so without rigid adherence to ‘rules’ or schedules that no longer work effectively.

6. Maintaining Commitment to the Family Unit – resilient families maintain a commitment to family cohesion and strive to keep the family together as a unit. The identity as a family is important and the child with the disability as well as siblings and parents are all considered to be important, valued members of the family unit.

7. Engaging in Active Coping Efforts – the family strives to cope; concerted efforts to grow and adapt are made. The family members continue to find ways to manage their situation. Behavior that reflects feelings of helplessness or futility are not seen.

8. Maintaining Social Integration – the family continues to be part of its own larger family system, is engaged with a network of other families (who may or may not have disabled

children ) and are part of the community as a whole. The resilient family does not isolate itself from the world.

9. Developing Collaborative Relationships with Professionals – the resilient family sees professionals as partners in the child’s care. Professionals are not seen as saviors or as enemies; their expectations are appropriate and realistic. The family and professional works together to help the child.

Questions to think about regarding families and individuals with disabilities - relationships within the family

Children with disabilities have an impact on their families, and likewise the family is central to the child’s development and adaptation to the world. There are special considerations that one needs to take into account when thinking about families and children (of whatever age) with disabilities/special needs, as well as for individuals with disabilities. All of us, whether we have a disability or not, are profoundly affected by our families; our identity as individuals and our ability to relate in the world are greatly shaped and influenced by the families we grow up in.

The family is the central unit in our society and is responsible for providing for the economic, educational, social, recreational, health and emotional well-being of its members. The extent to which the family is able to accomplish these goals is dependent upon its psychological, social and economic resources and its ability to help the individual with a disability achieve independence, as much as is possible or is realistic.

It should be noted that in this society, particularly that of the white anglo-saxon culture, there is a premium placed on independence and autonomy; this is not necessarily the case in other cultures and countries. In some societies, however, the goals of achieving independence and autonomy are considered primary, and an individual’s and family’s success is often measured against this standard. For a person with a disability whose capacity or ability to live and work independently may be influenced by his/her disabiity, these values may be difficult to achieve and may be goals that the family struggles to attain.

In talking with an individual with a disability and in trying to understand his/her experiences as a member of a family, the following questions may be helpful.

1. To what extent did the person feel he/she was an integral part of the family? Did he/she feel included or excluded from family life? Did the individual feel "on par"? Did he/she share equal status with other family members?

2. To what extent did the family encourage or discourage the individual’s participation in school, social and community life? Was the individual encouraged or discouraged from being a part of activities outside the family?

3. What did the family teach the individual about failure? When the individual experienced any kind of failure or disappointment, how was it dealt with? Did the individual feel it was responded to with empathy, indifference, anger, or some other emotion? Was he/she encouraged to take on other challenges and see failure as a learning opportunity, or was he/she encouraged to avoid and shrink from new challenges? Likewise, how did the family encourage success? Were the individual’s experiences of success noticed and valued?

4. In his/her family of origin, did the person feel he/she was treated as an individual or were his/her disabilities seen as primary? Was he/she encouraged to develop interests and/or strengths, or was the focus on remediating areas of weakness?

5. How did the individual’s family exhibit the nine aspects of family’s resilience as discussed in the previous lecture? How did the family’s success or difficulties with achieving resilience affect the person with a disability?

learning about the family of the person you're spending time with

As you spend time with someone with a disability, you will be talking (I hope) about various aspects of each of your lives. It would be useful if you could find some time to talk about each other's families. Your goal here is not intrusion; it is to see if the person's family was supportive, over protective, treated him/her like a regular member of the family or set him/her apart from everyone else. You might also find it interesting to compare your own family history with that of this person. Some topics that may help you to learn about this include:

• chores: did everyone in the family share chores

• dreams and goals: was the person encouraged to follow his/her own interests and vision for the future

• relationships with brothers and sisters

• school life

I do not expect this to be a formal interview. However, please indicate whatever info is learned about the person's relationships within the family within the information as part of the paper.