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An boy dealing with autism interviews his mother.

In my mind, becoming a parent is an inherently hopeful process. What happens, though, when things don’t turn out as expected? Emily Rapp writes beautifully about her journey as a parent of a child with a terminal disease.

“My son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state.  He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed…”

Read the rest here.

Joseph Nowinski recently wrote an article for “The Psychotherapy Networker” on the effects advances in medical technology have had on the grief process. Life continues while quality of life may dissipate and for the first time in history, death sneaks and and stays awhile before stealing away. An excerpt from the article is below:

…The grief we experience today results directly from the increasing ability of modern medicine to arrest or slow terminal illness and stave off death, even as the body and mind progressively shut down. I lost my grandfather whole, in one fell swoop; I lost my grandmother piece by piece.

The essence of the new grief is the gritty business of living with slow death…

How do you think quality of life is related to grief?

I have completed my thesis, entitled “Metaphorical Language and the Nature of Hope Among Mothers of Children who Deal with Mental Illness.” If you are interested in a complete copy, please email me.

A qualitative study of mothers’ experiences raising a child who dealt with mental illness is presented. Twelve (n=12) mothers participated in this grounded theory study. Metaphorical analysis was used to understand how mothers conceptualized mental illness and hope. Mothers described mental illness in both static and dynamic terms, meaning that for some mental illness was primarily a fixed entity, or a “fact of life,” whereas for others, mental illness was an active entity that maneuvered to change their children’s and their own lives. Mothers described hope in terms of striving for presence, “normality” and productivity. Emotional experiences of mental illness, grief and loss, and stigma were also discussed. Recommendations for further research are made.

Final excerpt…

…This study contributes to existing research by exploring and analyzing metaphorical language mothers use with regard to mental illness and hope. It also contributes to understanding some of the emotional responses mothers may have to their children’s mental illness. Additionally, by highlighting metaphor as used by mothers of children who deal with mental illness, this study emphasizes the importance of the abstract, spiritual and meaning-based structures that frame experiences of mental illness. Anticipating, exploring and understanding the abstract elements of an individual’s experience with mental illness may promote therapeutic alliance, and thusly, would improve treatment outcomes. By including another family member (in this case, mothers), this study also contributes toward development of a systemic conceptualization of mental illness…


Thesis Excerpts Continued:

…Mental illness affects not only the individual who personally deals with it, but that individual’s family and friends. Research on microsystemic experiences of mental illness has generally focused on recommendations for social service providers and caregiver burden. Little research has been completed on the wider lived experience of family members and loved ones who may or may not be primary caregivers for individuals who deal with mental illness.

Familial caregivers of those who deal with mental illness report a variety of experiences and outcomes. The care giving experience, as perceived by caregivers, is at once described as stressful, unsatisfying and upsetting, and at the same time critical and therapeutic (Chang & Horrocks, 2006). When an individual presents with mental health concerns, it is not typical for family supports to be immediately offered. Additionally, it is rare for family members to report their own needs (Heru, 2000). Parents and families of those who deal with mental illness may be reluctant to seek psychotherapy for themselves, possibly because of a denial of their own trauma or the belief that their loss is not worth mourning (Burkhalter, 2010). A psychotherapist who wrote of that loss described his own experience parenting a special needs child as trauma: “There is the initial trauma, which for us was the realization that those silent ten fingers/ten toes prayers had gone unanswered…” (Burklalter, 2010, p. 23)…”

As I’m sure you’ve noticed, my posting has slowed down quite a bit on this blog. I’m working on my thesis, so for the next few months I’m going to focus on putting out excerpts from my thesis. If you are interested in a final copy of this project when I am finished, please feel free to email me.  The first excerpt begins below:

“The preoccupation with categorizing and diagnosing mental illness has led to an emphasis on the tangible and objective, and a corresponding de-emphasis of the subjective, emotional, spiritual and symbolic” (Young, Bailey & Rycroft, 2004, p. 191).

            Current conceptualizations of mental health and illness focus on the diagnosable individual. However, individuals who deal with mental illness also have families, friends, partners and other loved ones who are affected by their experience of the mental illness. Minimal research exists on loved ones’ experiences of mental illness. This is problematic because as Cowling, Edan, Cuff, Armitage and Herszberg, (2006) state: “the unwell person is enmeshed in a family context. The distress of the unwell person is also the distress of the family. Clinicians should be acutely interested in the family context” (p. 416)

Individuals and systems are bound by context.  For instance, although according to surveys, higher rates of domestic violence are demonstrated among African Americans than whites, when the confounding effects of poverty and racism are eliminated, that difference between ethnicities also disappears (Hamel, 2005, 30).  Ethnicity as a contributing issue, therefore, is ruled out in the etiology of domestic violence and instead, classism and racism stand indicted.

As competent researchers and practitioners, we look for confounding contextual factors that speak against narrow viewpoints such as those that would suggest that “African Americans are violent” (Hamel, 2005).  In short, in our investigations of individual trees we don’t miss the forest or the dirt or the sky.  We want to see the detail, as well as the whole picture.

In Gender-Inclusive Treatment of Intimate Partner Violence: A Comprehensive Approach, Hamel describes individuals dealing with “psychopathy,” as “essential untreatable” (54).  Although I understand the pragmatic intent of treating immediate issues of violence with an attitude of triage, I am unsure how perpetuating such worldviews positively impacts the likelihood of developing treatment methodologies in the future.

As an MFT, I believe that one of the primary limitations that competent therapists deal with is an awareness of the confines of our own sight.  We can only see that which we think is possible to see.  In our educational system, it is vital that we learn both the importance and efficacy of triage, but also employ significant questioning whenever an individual or their diagnosis is deemed “untreatable.”  Certainly, in the present moment, some individuals live with diagnoses that are unresearched, difficult and/or impossible to treat.  Antisocial Personality Disorder, the “psychopathy” Hamel refers to falls in this category.  However, that is only for the present moment.

As the future of mental health and the future of many individuals without the resources, knowledge or connections to advocate for themselves or their loved ones, we have a responsibility to read any claims of “terminal” with both a skeptical eye that questions the details of validity and a wide angle lens that notices the wider contextual factors that may be contributing to that claim.  For instance, Robert Foltz, a research whom I much admire, wrote regarding the treatment of Conduct Disorder (an established pre-cursor to Antisocial Personality Disorder, or “psychopathy”), its “likely that that brain changes in youth with psychiatric disturbances are actually the product of their life experiences rather than the cause of their symptoms” (2008, 7).

I appreciated Hamel’s description of assessment of domestic violence.  I especially appreciated the focus toward practitioners evident by the straight-forward counsel regarding assessment tools and biases to notice.  I did take issue with his description of “psychopathy” as untreatable, not because it is untrue, but because there simply are not treatments yet.  It is possible to describe the extreme limitations in providing treatment for specific diagnoses without effectively describing them as terminal.  In the education of future counselors, even simply stating “right now, there is not a treatment” is preferable, because it includes the “right now.”

Foltz, R. (2008).  Behind the veil of conduct disorder: challenging current assumptions in search of strengths. Reclaiming Children and Youth. 16(4). 5-9

Hamel, J. (2005). Gender-inclusive treatment of intimate partner abuse: A comprehensive approach.  Springer Publishing Company: New York, NY.

Kids learn more formal social skills from their parents, but the bulk of their social learning seems to come from siblings or peers of their cohort.  By helping kids form cooperative relationships with each other from an early age, parents help kids adjust and maintain cooperative relationships into adulthood.  For parents of only children, using playdates or daycare may be an important tool towards developing their children’s social skills.

When I worked with clients dealing with Reactive Attachment Disorder, I saw some really interesting patterns in their styles of play.  As adolescents, they still seemed to demonstrate more parallel play styles than cooperative or even pretend play.  I attribute this to the disruption in their early development.  Although I’m not a parent, how do any of you remember your children’s social development occurring?

University of Illinois at Urbana-Champaign (2010, January 15). Siblings play formative, influential role as ‘agents of socialization’. ScienceDaily. Retrieved January 16, 2010, from­ /releases/2010/01/100115112104.htm

When families are dealing with an individual member with First Episode Psychosis (FEP), they often feel terrified, powerless, and victimized.  It doesn’t help that those families first interaction with mental health professionals is often at the hospital emergency room or through police intervention.  Often when families interact with the professionals in charge of caring for their members, they get told to effectively “deal with it.”  Interventions are brief, intense, and often patronizing.

Families want to know more about what is going on in their members’ psychological help, but they don’t want to be talked down to.  They want to be partners’ in their members health, not barriers to it.  Historically, mothers especially have been considered the cause of schizophrenia and that sort of outlook is not only obsolete, but harmful.  As much as possible and reasonable, families should be included in treatment planning and process.

More than anything else, families need to hear that dealing with psychosis is “a marathon, not a sprint.”  It will take a period of often up two years following a single psychotic episode to fully recover.

Buttery, H. (2005). The long road home: families key to caring and recovery in first episode psychosis. The Journal of Addiction and Mental Health. 12(3).

July 2020