CE Home > Occupational Therapy > OT01 A Mother's Occupation: OT for Mothers with Hard-to-Parent Children

The Greek scientist Archimedes said, “Give me a lever long enough and a place to stand and I can move the world.” Mothers are the levers in families. They occupy a powerful place from which to move their children toward therapeutic goals and satisfying social participation.

While mothers are often the tipping point in a child’s successful outcomes, they also bear an unparalleled proportion of the burden of care. Too frequently ignored by those recommending intervention protocols, mothers can experience social isolation, burnout, self-doubt, distress, depression, and the loss of competence within the role of mother.

Therapists should make it a priority in intervention planning to support mothers in their ability to create normalizing routines if they feel socially isolated and exhausted, and unable to access social support networks with which to share their experience. Building a cohesive network allows mothers to replenish their energies so that they can successfully parent society’s challenging children, a necessary variable in the equation of healthful outcomes.

Motherhood is a major life role for more than 85% of adult American women. Few other occupations profoundly affect so many women across all socioeconomic and cultural boundaries. However, its commonness belies its importance and complexity.¹ Mothering as a personally and socially constructed adult role represents a lifelong occupation fundamental to a woman’s core identity. Much of that identity centers on trying hard to respond successfully to her children, who may have unrelenting needs.²

Mothers are hopeful that their young adult children will successfully transition from adolescence to adult life. They feel successful when their children can participate in normal family activities, school, and organized social events, such as parties, as well as maintain daily routines with increasing independence and engage in age-appropriate social relationships.

Some children are hard to parent, including those with intense temperaments, sensory processing differences, or learning disabilities, whose nonengaging behaviors create constant turmoil in their families. When a mother has a child with a chronic impairment, the occupational demands of mothering extend to address the specialized needs of that child.² Mothers of children with hidden disabilities describe their lives as distressing, frustrating, hypervigilant, and full of worry for their child in the adult world.

Their day is spent supporting their children’s needs with little time or energy for personal restorative occupations, which leads ultimately, to social isolation.^2,3 For example, mothers of children with autism report spending 9.7 waking hours per day with their child (50%), compared with parents of typical children, who spend only 6.1 hours per day.⁴

Additional stressors enter the lives of mothers who parent children with hidden disabilities. For example, mothers of children with mental health disorders report trying to learn all they can to make good decisions and follow best practices in the face of messages from well-meaning acquaintances and the media that they are never good enough.² Mothers of children with hidden disabilities, such as attention deficit/hyperactivity disorders (ADHD), autism spectrum
disorders (ASD), pediatric bipolar disorder (PBPD), and nonverbal learning disabilities (NLD), have less confidence in their ability to successfully mother their children, feeling they are on constant alert and there is no “normal” day.²

Nevertheless, mothers try to construct lives for their families that are as normal as possible.⁵ Even if they have children with chronic disabilities, these mothers try to integrate them into normal family routines. Mothers strive to create narratives that include a past, present, and future for their children that “feel normal.”⁵ They try to accept the child as  he or she is, yet hope for improvement in the symptoms that interfere with function.⁶

Autism and other disorders of social relatedness, along with other childhood-onset mental health disorders, are gaining increasing attention in the popular press. These diagnoses bring significant barriers to normalization and smooth orchestration of family patterns. Whether these disorders are on the rise or only increasingly recognized is an area of dispute, but no one disputes the anguish and financial burden that is placed upon our families and our communities.

What does caring for and nurturing a child with NLD really mean? What does it mean to foster the growth of a child struggling with pediatric bipolar disorder? Best practice must have answers for these questions if we are to offer meaningful occupational interventions. If we cannot help families do what they need to do together as a family, we may be creating interventions that interfere with their ability to participate in their occupations, and this in turn may hinder child development.⁷

A Mother’s Special Problem

Mothers who cannot successfully engage in the occupations defined by their role of mother because of their hard-to-parent children are an unrecognized and underserved client population. Mothers with hard-to-parent children need additional support to prevent the distress, social isolation, and negative health consequences that come with mothering a child with a hidden disability. This important, but neglected, performance area demands our attention. Occupational therapists who provide direct treatment to these children, whether through school-based settings or clinical work, must address the social context of the family if best practice methods are to be employed.

Children with challenging behaviors are increasing in number, and the behaviors themselves are increasing in intensity. ADHD occurs in about 7.8% of the population. Comorbidities of severe behavioral disorders resulting in poor social participation occur in about half of diagnosed cases and include oppositional defiant disorder, increased injuries, difficult peer relationships, and additional learning and conduct disorders.

A significant number of children diagnosed in the United States with ADHD may have early-onset BPD. PBPD affects 4 to 6% of school-aged children. Behaviors that lead diagnosticians to suspect PBPD include destructive rages that continue past the age of 4, talk of wanting to
die or kill themselves, or attempts to jump out of a moving car. These behaviors illuminate the challenges inherent in parenting children who intensely display unrelenting, nonengaging behaviors.⁷

The demands on these children’s mothers are also rising. Data addressing the needs of primary caregivers haven’t kept pace with data commonly gathered about the needs of the child. An initial occupational profile includes the assessment of the physical context, such as what the home or classroom looks like and the social context, such as how informed the teachers, the staff, and the child are in regard to the disability and appropriate expectations.

While occupational therapists do provide inservices and education to individualized education program (IEP) teams, teachers, and others sensitive to the child’s needs, we haven’t provided programs to sensitize those same team members to the caregiver burden associated with the role of mother. We have done little, if any, training of the mother about how to care for herself as she navigates the convoluted and exhausting maze of parenting the hard-to-parent child.

We provide education to her about the child, but not to her about herself. And when we overattend to the child without regard to the mother and the context in which the role of parent is occurring, we abandon a principle in our code of ethics — beneficence, a fundamental concern for the well-being of our client, who in the case of a child, includes the parent in the role of mother.⁸

When addressing the occupational deficits of a child and developing a plan of remediation, accommodation, and compensation, the primary implementer of our plan is the mother. She must somehow construct habits, routines, and rituals that are engaging, therapeutic, and normalizing, all in addition to her already full role in the occupations associated with mothering.

It’s no surprise that mothers’ appraisals of themselves and their children reflect their own visions about what they perceive to be their children’s future options. The relationship with the children’s school and the healthcare system can become a source of exhaustion, distress, and frustration for mothers of children with hidden disabilities.

For a positive adaptation, these mothers must develop skills and resources to negotiate the stressors related to overstressed and understaffed schools and healthcare systems. Yet their support networks have dwindled, and they have few resources to apply to the problems they face. And as the number of confidants has declined, the circle of others available for support is primarily kin.⁹

Mothering is a stressful job, albeit one not without offsetting joy. Stress is but a secondary and transient state associated with this adult role. However, mothering children with mental health disorders and children who are hard to parent due to temperament, sensory processing differences, LDs, or other nonengaging behaviors can create a state of persistent, intractable distress.^{2, 7}

Mothers of children with NLD and Asperger’s syndrome, for example, had higher rates of stress related to family problems and pessimism about their children’s future outlooks. They used antidepressive medication as a coping mechanism and accessed psychotherapy more than the fathers.¹⁰ Studies consistently demonstrate that mothers of children who have mental health disabilities are more stressed and depressed, and have fewer adaptive coping mechanisms than their spouses, mothers of children with physical disabilities, or mothers of typically developing children.

Nevertheless, treatment mechanisms are unavailable to meet the needs associated with parenting children with nonengaging behaviors. Furthermore, poor professional understanding, lack of services, and lack of public awareness further compound the problem, isolate the mothers, and prevent treatment for mothers’ stressful load.^{2, 7, 11}

With all pediatric mental health disabilities, caregivers are expected to provide therapeutic parenting. This includes reading everything they can; creating and ensuring a stress-reduced environment across all contexts for the child; arranging for adjusted school schedules, such as late starts and early pickups; arranging for participation in art and therapeutic social skills programs, tutoring, and psychiatric visits; providing unlimited access to water and other
nutritional supports; and back and forth journaling between home and school (i.e., writing daily logs of child’s performance).¹²

Mothers provide the majority of therapeutic parenting, often negatively impacting their own areas of occupation. Client factors of values, beliefs, and spirituality can either be a support or a barrier to their overall wellness. Personal body functions and structures affect their performance skills and performance patterns. The energy needed for activities in which the mother is asked to participate can be beyond her resources.

Hard-to-Parent Children

Mothers of children with disabilities want their children to be welcomed, accepted, and included at a time when Americans are experiencing an unprecedented decline in social relatedness, networks for social support and opportunities, and chances for meaningful engagement. These trends are eroding the fragile coping strategies of families, and primarily mothers.

However, mothers seem to understand the significance and protective nature of social competence for their children. Researchers suggest that families who normalize childhood chronic illness recognize the seriousness of the illness while continuing to view their child and family as unchanged in important ways.³

This “normalcy lens” allows the family to view the child and family as normal, and this family identity of “typical” sets the stage for managing illness-related demands in a way that sustains usual patterns of family and child functioning.¹³ Strong social skills in the mother are associated with successful navigation of peer relationships in the children.¹⁴ Attachment theories consistently show significant links between parent-child attachment, emotional expressiveness, and the development of social competence.

But what happens when children who need significant support with social relationships, daily living skills, and behavioral regulation exhaust the resources of the mother who, as a result, has no means of replenishment? The value-laden role of “Mother Figure” places an exhausting and socially isolating burden on mothers of hard-to-parent children. This leads to predictable and devastating health consequences. Many suggestions made by experts have unintentionally overburdened caregivers. The mother is exacerbated by the unattainable level of care required of her to provide. Mothers have called the manner with which they are judged “social censure.”¹

Evaluation and Intervention

Occupational scientists use theoretical models and frameworks that include the interrelationship between the physical environment and human behavior or experience.^{15, 17} Domains of practice are organized to support therapists in the inclusion of all meaningful contexts and actions occurring within them. One environmental context is spirituality, the fundamental orientation of a person’s life that involves what inspires and motivates an individual.

Attending to the spirit of another is a value within the profession of occupational therapy. By assisting clients to acknowledge their own worth through using their unique gifts and interests, a sense of restoration occurs within the therapeutic process. When treating children who have nonengaging behaviors, attending to the spiritual wellness of the primary caregiver is critical.

According to the Occupational Therapy Practice Framework (OTPF), occupational therapists gather information from the client to facilitate engagement in satisfying occupations.¹⁷ Intervention requires skilled actions, clinical reasoning, and problem solving. Intervention can take many approaches including health promotion, remediation, maintenance of current levels of function in the face of stressors, adaptation, and prevention of secondary and tertiary disabling factors.

Evaluation includes the development of an occupational profile and an analysis of occupational performance. The occupational profile is the initial step in the process of evaluation and helps document the shape of the client’s current occupational experiences — it tells the client’s story. And as therapists gather data, they listen to the client’s story. The profile includes the history and experiences of the client, the patterns and flow of daily life, and what he or she values, needs, and finds interesting. The occupational profile chronicles and articulates the client’s problems, concerns, and priorities.[See table 1]

The analysis of occupational performance goes deeper to explore the areas introduced or obtained during the occupational profile. During this phase of evaluation, occupational therapists observe performance and context, and identify that which supports and hinders occupational function. Performance skills, patterns, contexts, activity demands, and client factors are all considered and prioritized in collaboration with the client. The therapist and client identify meaningful outcome measures. The analysis of occupational performance is similar to traditional treatment plan formats that occupational therapists use.

The intervention phase includes the plan of action, its implementation, and a review of the efficacy of the treatment. Outcomes can be operationalized in many ways. The Occupational Therapy Practice Framework suggests outcomes can be measured in regard to increased occupational performance, greater adaptive skills, enhanced health or wellness, and greater participation in the occupations the client finds meaningful and personally satisfying. Outcomes can prevent further disability or provide a greater quality of life by restoration of hope or a resolute sense of self-competence. The ability to give voice to one’s concerns and advocate for those you love is a measurable outcome and one outlined in the practice framework.

Outcomes, no matter how they are defined and measured, must support health, participation, and meaningful occupational engagement. To achieve competency in the role of mother, mothers need adaptive capacity. They must be empowered to increase the quality of their lives and the lives of their family. An outcome of great significance for mothers is role competence — the ability to effectively meet the demands of roles in which the client engages.¹⁷

Ultimately, to be a mother and to feel competent, successful, and healthy is an act of occupational justice, enabling those engaging in the occupations associated with that role to access and participate in the richness of life, of relationships, and of mothering in a satisfying way. Interventions and outcomes must encompass these themes if the mothers are to live congruently with the expectations of being a “mother” in our culture.

Listening to Their Story

One researcher suggests that therapists can understand the experiences of mothers through their emotional descriptions of their lives using sensory vocabulary such as bland, tasteless, without spice, unsavory, unpalatable, and hard to digest.¹⁶ When gathering data for the occupational profile, listen for key sensory words that give emphasis to the mother’s
lived experience.

Mothers who are experiencing reduced engagement in a satisfying life due to external demands that overwhelm their processing capacities need real change in their lives to regain a balance and find peaceful family cohesion. Sensory vocabulary terms, such as crushing, grave, numbing, deadening, piercing, knife-like, heavy, and avalanching, are telltale signs of stress that has devolved into distress.

Occupational therapists believe that successful engagement in activity promotes confidence, self-esteem, and an “I can” mind-set while chronic social failure creates an internalized expectation of social incompetence.^18,19 Participation and social engagement with members of a community is strong insurance against life’s stress, depression, and health-related disorders. Being isolated secondary to one’s disorder or due to caretaking responsibilities seems intuitively to contribute to social isolation and distress.

However, the literature has neglected this relationship. Part of the intervention, then, needs to be helping mothers establish, restore, or create normalizing habits, rituals, and routines. Use of techniques such as energy conservation and work simplification can free up needed units of energy that can be banked and applied to personal needs.

The importance of helping mothers realize the need to create coping strategies, respite opportunities, and good habits of rest and sleep should not be underestimated. Spills, fender benders, missed appointments, and forgotten medications can all occur with sleep deprivation, overwhelmed cognitive capacities, and spiritual fatigue.

When conducting an occupational profile, therapists must seek to understand, from the client’s perspective, the problems most impacting wellness. Later, when therapists are developing a plan for intervention, the profile helps prioritize the therapeutic process.

For example, while the therapist may think a child’s kicking holes in his bedroom wall would constitute a behavior that requires immediate attention, the parent may have other priorities, ones that reflect his or her values. I once had a client who said of such holes in the walls, “When he’s out of the house, we’ll patch it. For now, I need to be able to sit by myself each morning and get my thoughts organized, or I’m unable to cope for the rest of the day.” I worked with another family who had a daughter who could not stand to hold a pencil (the unpainted part made her teeth scream, she said).

While I was inclined to treat that as a priority because of its impact on her entire school day, the mother wanted the child to be able to sit through a Sunday sermon, so we addressed that outcome first. The therapist must identify the priorities of the parent, the mother, even if doing so doesn’t fit with our protocols or theoretical rationale. Sometimes, helping the caregiver feel whole and able to live life to a full measure can be the priority in the treatment of a child.

We can’t know this set of values, needs, and essential truths unless we first listen. Once we identify the problems as they relate to the mother’s role of mothering, we then put forward a plan, addressing activities of daily living, instrumental activities of daily living, performance skills, client factors, context, performance patterns, and the activity demands in the life of the client and that of the mother.

Caregiver burden is an unintended and unrecognized health risk in our society with predictable health-related consequences. Research suggests this burden is higher in mothers, higher still in mothers parenting children with disabilities, and highest in mothers parenting children with nonengaging behaviors. Including mothers in our evaluation and intervention phases of treatment can produce exponentially better results in the lives of the children on our caseloads. We have a moral, professional, and humanitarian obligation to attend to this underserved population.

Susan Esdaile and Jane Olson, authors of the book, Mothering Occupations: Challenge, Agency, and Participation, illuminate the experience of mothers who parent children with disabilities. They summarize what these mothers want; that is, children who can participate fully in their own communities, who experience a vital connection to others, and who live satisfying lives.²⁰

The World Health Organization’s International Classification for Functioning, Disability and Health relates authentic participation can only occur when obstacles are removed and social supports along with facilitators are provided.²¹ Mothers as activists become facilitators of participation by listening, being there, and orchestrating the lives of their children. But who are the facilitators for the mothers?

We have turned a laser-like beam on the child who has a disability, but we must now cast a softer, wider beam and shed light on a nearby quiet, but wounded front-line warrior. The charge issued on each plane urges you to put your own oxygen on first. But we do not support this essential wisdom in our treatment. We first oxygenate the child, while turning a deaf ear to the gasps arising from the mother.