When a Child Has a Life Threatening Illness

Below is the outline for a course I teach on Parenting Children with Life Threatening Illness. I offer an adaptation of this course as a 90 minute parent education talk.

 

When a Child has a Life Threatening Illness

The Shock of Diagnosis

  • Parents can become depressed.
  • Parents can be thrust into grief.
  • Parents can become psychically numbed – in the service of delayed grief.
  • Parents could cope through all of this.
  • Parents may not cope well through all of this.

Treatment

  • Coping with toxicity of treatment – parents are torn between fighting the illness and wanting to protect their child from unnecessary suffering.
  • Facing the unthinkable, thinking through the unknowable.
  • Living with ambiguity.
  • Falling off the developmental train: out of step with other children and parents; feeling isolated; protecting your child’s self-esteem at the cost of connection to other adults.

Post-treatment

           Cure

  • For the child who is cured post-treatment, there will be a period of time in which the parents view the child as fragile beyond the fragility of healing. They may be afraid of relapse, or simply shaken by the experience of the diagnosis and treatment.
  • Over time, if there is no relapse, and good recovery, parents can regain confidence in the child’s robust health. But sewn into the parents’ psychology is the trauma of the event. Subsequent childhood issues may be felt more strongly that if these parents hadn’t had the experience of diagnosis.

    Examples: some heart problems; pre-maturity, without complications; accidents; etc.

     Chronicity

  • Commensurate with the level of debilitation, the parents have to adjust to this new and unexpected version of childhood for their child, and this unexpected version of parenthood for themselves.
  • There are losses to be grieved: loss of the healthy child; loss of the innocence of new parenthood; loss of the community of parents of healthy children; etc.
  • Foreshortened future.
  • Financial stress.
  • Incursions into freedom as medical appointments take time and impact upon scheduling, from daily schedules to vacations.
  • Constant evaluating whether childhood troubles are “normal” or sequelae, the result of illness; constant evaluating whether a childhood problem is transient, developmental, or more sinister.
  • Adjusting to the new, unfamiliar future for the adult one’s child will become and how to prepare for independence, or relative independence or for adult dependence.
  • Coping with the situation in which a child will certainly succumb to an illness.

   Ambiguity

  • Protecting the child’s integrity and sense of self as healthy while also attending to one’s own sadness as a result of the ambiguous health status.
  • Learning to live with uncertainty.
  • Coping with parental isolation as one’s community cannot possibly reflect accurately one’s experience.
  • Some parents find it difficult to attach to a child whose future is uncertain.
  • Some parents struggle with being over-protective of a child whose future is uncertain.
  • Some parents periodically feel a crisis of faith, having to then re-group in order to move forward with the same fervor and commitment.
  • Living with ambiguity is tiring; it should be expected that parents will fall apart from time to time, even as their child thrives (Reasons: getting tired; passing conscious or unconscious landmarks, e.g. the child’s approaching an age the parent never thought they would get to).

Effects on the Family

      Structural impact

  • Primacy of couple.
  • Time spent with other children.
  • Altering of developmental norms.

Psychological/spiritual/philosophical impact

  •         Primacy of couple.
  •         Orientation to the future.
  •         Living in the now.

When To Hold a Child Back in School

When To Hold a Child Back in School

QUESTION:

Our child’s preschool teachers suggest we consider keeping our almost five year old in preschool one more year. He’s very bright, and makes friends easily. He knows his letters and numbers, can pick out words in books we read to him regularly. His teachers say he could use another year to mature socially and to better focus and follow directions. We are worried that if we wait a year, he will be bored in the classroom.

ANSWER:

School-readiness is a complicated equation, and a difficult one for parents to sort out. I can give you a few points with which to frame your decision. Thinking about your child within this framework may make the decision clearer.

The question of school-readiness typically comes up at the start of kindergarten (Should we start our child in kindergarten now, or wait a year?), during elementary school (Should our child repeat a grade?), and after high school (Should our child take a gap year?).

While academics are an important part of school, they are not the only consideration for school-readiness. Think of school as requiring mastery in three equally important areas:

Structural: 

Cooperating with and mastering the schedule, rules and expectations of the school; by extension, cooperating with and mastering the schedule, rules and expectations at home that support school life.

Social:

Making and navigating friendships; managing the extended social worlds of the playground free-for-all, of older and younger children, of group activities such as sports, band, etc.; dealing with adults that are neither your parents nor doting extended family.

Content:

Academics: Learning to read and write, and basic arithmetic through third grade. In fourth grade the big shift from “learning to read” to “reading to learn”. Building on accumulated skill in math. The shift during middle school from mastering material one lesson at a time to engaging in extended projects, like I-searches and reports, which require planning and time management skills. In late middle school and beyond, the beginning of complex and abstract thinking.

Arts: Exposure to and instruction in music, visual arts, dance, literature and spoken word.

Sports: Learning how to play with others within the structure of rules. Learning to be a team member with increasing awareness of others, their strengths, their positions, and your relative roles in the game. Learning to win or lose graciously. Learning from experience by reflecting on your performance. Making relationships with everyone on the team without exclusions or favorites. 

A sense of mastery is an important developmental achievement for the elementary school-aged child. Most children achieve a sense of mastery at school; It is part of the natural course of development. When children struggle in school – academically, socially, or behaviorally – they feel out of step with their peers, which impedes their sense of mastery. The resulting bad feelings about themselves can lead to secondary problems, such as difficulty managing emotions or behavioral outbursts. For these reasons, struggling socially, or not being able to manage the structure of school life, are problems that should be taken seriously.

The structure of school life requires children to have good impulse control, to be able to delay gratification long enough to keep trying at something that is frustrating, to find and try many ways into a social situation, to be able to focus when there are other stimuli in the environment, to be able to sit still and not talk sometimes (even if you really, really want to), to have increasing awareness of the people and dynamics around you and to be able to adapt to those conditions easily. Being able to cope with the demands of the school environment and to function well within them are signs of maturity, adaptability, and socialization.

These conditions of school life help children learn that there is a time and place for everything, that the classroom is a place where there has to be room for everyone, where you learn to share the attention of your friends and your teacher, where you find new and different ways to both be yourself and fit into the expectations of the environment. These are all important lessons that amount to becoming well-socialized and able to cope with real life. Children tend naturally to be best behaved at school, a little looser and more spontaneous in the playground and with friends, and even more relaxed at home. This kind of adaptability, knowing how to act in different environments, and enjoying all aspects of yourself – from disciplined to loose and silly – are hallmarks of socially confident children.

If a child entering kindergarten has trouble with impulse control, difficulty paying attention or focusing, trouble managing social relationships, or is not yet sufficiently aware of his or her surrounding environment to pick up on cues and comply when expected, then this child will likely experience a great deal of correction in the classroom. While we expect teachers to have good classroom management, it is too much to expect teachers to instill basic socialization skills. Children who do not have these basic skills become disruptive to the classroom. The classroom is not meant to teach these basic skills; The classroom is meant to capitalize on them in the service of teaching other things.

The upshot is this: A child who is not ready for school from a behavioral standpoint is neither going to reap the rewards of learning at school, nor receive adequate instruction in basic socialization. These basic skills come from the home. They are reinforced and shaped in preschool. If your child is struggling with these basic skills, despite his ability to recognize numbers and letters, he may well benefit from an extra year in preschool and you may benefit from consultation with a professional evaluating your child’s needs and your response to them. For instance, you might evaluate the structure of home life, providing optimal rest, exercise, nutrition and sleep, to pitch to your child’s strengths and minimize difficulties. You might also work on a stepped-up program at home in limit-setting and behavior management, aimed at strengthening your child’s impulse control, his ability to ignore distractions and to focus, and his ability to name his emotions and feelings, putting his experience into words to better negotiate relationships and manage frustrations.