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Author: Adam J. Geyer

The Center for Children with Special Needs at Tufts-New England Medical Center is a multidisciplinary center that evaluates and treats children who have developmental, learning, attentional, neurological, motor, behavioral and social/emotional disorders.

Overview

  • The presence of a child 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 is 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 and help the family cope in a flexible, adaptive way.
  • There are not always interventions or treatments that “cure” the child’s disability. Helping the family to understand this, as well as helping them 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 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.
  • The physician plays an important, often pivotal, role in the child and family’s life and can be an important resource for information, guidance and support.
  • 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 children with disability in their lives.
  • The concept of resilience is an important one and is less pathologizing than older notions of “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 who have 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.
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 very difficult 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 “connectedness” 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 that require care at home. Parents often administer treatments that 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 motor problems as well as 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.

Nine Aspects of Resilient Families

Resilient families are those who have been able to cope and adapt to the presence of a child with 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 a disability as well as other family members (parents and siblings) all get their needs met. In families who are less resilient, the entire world revolves around the child with a disability and others’ needs are minimized or dismissed in favor of the child with a disability.
  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 inappropriate members 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-confrontational, 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 children with disability.
  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 children with 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 continues to find ways to manage their situation. Behavior that reflects feelings of helplessness or futility is 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; the expectations are appropriate and realistic. The family and professional work together to help the child.

How We Can Help

  • Families may experience periods of anger or denial, which can be very difficult for us to deal with. It can be easy to take this personally or be judgmental about the family. Parents who seek 2nd and 3rd opinions, who minimize our feedback or advice, or who do not follow through on our recommendations can make us angry. Parents who vent anger at us for not telling them sooner or telling them too soon or complain about our methods can put us on the defensive.
  • It is important to help families express and vent feelings and support their moving toward coping with the child and his/her needs. Understand that this is part of the process and it may involve the family obtaining other opinions, testing out various pieces of advice, being angry at you and/or minimizing your “professional authority.” Don’t take it personally and understand it is a process. Coping and adaptation doesn’t happen overnight and people may have their own ways of managing their feelings, some of which may be negatively directed at us.
  • Prior to diagnosis, listen to parents when they have a concern. They often know that something isn’t right. It is most helpful to explore their concerns and monitor the child carefully. Many parents feel most frustrated when a diagnosis is delayed because they were told a child would “grow out of it.” Many parents feel an earlier diagnosis might have enabled them to help their child sooner.
  • When delivering “bad news,” give the family a sense of hope. We all have negative stereotypes and stigmas in our heads about disabilities. Examine your own. Parents need realistic information and a sense that something can be done to help (but not necessarily “cure”) the child.
  • Help families build skills and facilitate resilience:
    • help patients and families improve communication skills
    • help them develop rapport and trust
    • value the parental viewpoint – don’t collude with the “professionalization" of parents
    • encourage social integration and balance
  • Provide Information: Information about the child’s diagnosis is invaluable. Reading materials, articles, bibliographies, websites and referrals to organizations/agencies can be enormously helpful. Information can help reduce misunderstandings, stigmas and stereotypes and can help identify the child’s strengths and weaknesses and set realistic goals for the child.
  • Interventions: There are usually several interventions that can be implemented to help the child medically, educationally and socially. Specific information about the child’s needs and the interventions such as medications, therapies, educational programs, behavioral management programs, and/or counseling that could help are enormously helpful.
  • Advocacy/Access to Resources: Families are the primary advocates for their children. They must often battle systems to obtain needed resources for their child. Information about advocacy services and parental rights under educational laws helps to empower the parent.
  • Support Services: Families may feel that they are alone in their search for resources and program for children. Providing information about Financial Aid (e.g. SSI/CommonHealth), Respite Services, Support Groups and other services can be of enormous help.

Ongoing Questions/Concerns that Families Have

  • Dealing with a child with 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.
  • Physicians can be helpful in understanding that old sorrows and concerns can resurface as 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.