Partnering With Parents—An Appraisal of Familial Feelings

I am the parent of a child with limited abilities—cerebral palsy as the result of an in utero stroke being our family’s particular challenge. I am trained as a lawyer and a journalist and untrained as a devoted parent and quasi cerebral palsy expert. Few medical professionals I have consulted with since my son’s diagnosis have treated me as a partner on this foray into the world of disability, or instilled any desire to sustain a life-long association with them.

This needs to change.

Medical professionals relentlessly challenge patients and parents. Yet little is written regarding the long term outcomes and broad consequences into adulthood for patients and families dealing with clinicians who limit their own abilities.

Dr. Paulo Selber recently published a piece on CLOSLER on the phases of parental grief in the context of children with limited abilities. I read his article with interest, noting its marked contradiction: a call for professionals to value familial feelings whilst seeming to concurrently trivialise and/or generalise them.

Selber neatly broke down parental grief in the context of children with limited abilities into four phases. From my perspective and experience the categories are limiting. Shock? Yes. Denial? Not really. Grief? Somewhat. Arrival? Perplexed.

My main frustration in dealing with medical professionals since our son’s diagnosis is their limited ability—with some remarkable exceptions—to discern the individual intellectual or emotional capacity of the parents and caregivers involved in their patients’ lives. Whilst Selber asks clinicians to value the feelings of families, he fails to identify the true value of a valuation.

An attentive appraisal involves a thorough examination of someone or something in order to judge their unique qualities, successes or needs. Selber fails to apply this attention to his appraisal of both parental feelings and of the available alternate “therapies” that he broadly claims are without merit and collectively places in emphatic quotation marks, also known in literary circles as scare quotations.

In doing so Selber promotes the classic therapy-in-a-box approach that fails to address the diverse population of children with limited abilities, whilst simultaneously introducing another unwelcome clinical concept—parental-grief-in-a-box.

As a parent, I have wholly ignored the advice of our rehabilitation team in Australia (where Selber hails from), acting instead on what he might term the throes of “Phase 3 Grief.”  I have no single word or description for what this phase might rightfully be called. It might rightly sound and feel like, “my medical team is bringing nothing to the table that is yielding results or making sense to me, therefore I have to take this into my own hands to improve my child’s quality of life as soon as possible.”

As a frustrated and persistent parent, I have pursued best practise advice and treatment for my son from St Petersberg to Allahabad, Melbourne to Madison, Durham and Toronto to St Louis and counting. I have been fortunate enough to have the intellectual, emotional and financial capacity to try an exciting variety of new and emerging therapies (no scare quotations) for my son. We’ve experimented with everything from cold laser therapy to electronic stimulation suits, intensive strength and conditioning training, modified adult neuro physiotherapy, Conductive Education, Cuevas Medek Exercises (CME), Constraint-Induced Movement Therapy (CIMT), Functional Electronic Stimulation (FES), and exhaustively explored the potential of the Portable Neuromodulation Stimulator (PONs) and Selective Dorsal Rhizotomy (SDR) surgery. Along the way, I have used my own intelligence and the advice of select professionals to weigh the benefits of each therapy. Some worked, some didn’t. The important thing is that some methods yielded results. We pursued them relentlessly. Our designated rehabilitation paediatrician recommended not one of these therapies to us.

I have exhaustively sidestepped the options brought to the table by our consultants: Botox, Ankle Foot Orthoses (AFOs), and paediatric physiotherapy. We’ve avoided them based on not much more than a mother’s intuition—that sinking feeling one gets when one is running themselves ragged and constantly feeling demeaned, anxious, and aware that no tangible results are being gained. Studies on Botox are slowly revealing the long term adverse effects on children’s joints and muscle growth; the AFO quite obviously limited the use of my son’s affected limb making it smaller and therefore weaker. The paediatric physiotherapy did not challenge my son’s abilities or capacity for concentration.

Because of our rebellion, and because of the alternate methods we’ve committed to, we have seen marked results in my son’s gross motor skills and spasticity. None of these improvements have been noted or recorded by our medical team. Instead, they have been met with dismissal and suggestions of quackery.

The problem or “current limitation” with today’s “stringent science” is that emerging treatments are held to the gold standard of randomised double-blind clinical trials before they are validated and accepted by the mainstream medical community. For most families dealing with disease or disability, the process for these approvals is simply too tedious and time consuming. We cannot wait. With some treatments taking up to 20 years to be approved and recommended by the medical profession, parents seek alternative treatments driven by frustration: not Phase 3 Grief. They navigate this deep dive based on anecdotal evidence; eyeballing results and the good old-fashioned suck it and see approach.

Like many approved medicines and therapies, the results with unapproved or alternate therapies vary wildly from individual to individual. Current studies often do not offer enough evidence to support outcomes, dosage, or guidelines for many of these therapies due to the heterogeneity of the cerebral palsy population and brain injuries in general. There is a lack of investigation into the combination of interventions. Neurological rehabilitation is intense and complex. It would be helpful to families in the context of limited abilities if more clinicians would devote time and funding to understanding emerging therapies rather than placing them in scare quotes.

Cerebral palsy expert and pioneer Dr. Karen Pape, who spent most of her career challenging the status quo, writes in her seminal book “The Boy Who Could Run But Not Walk“: 

“Unfortunately, scientific revolutions are disruptive and are actively resisted by guardians of the past . . . I believe it is time to question the dominant theory that the randomised controlled trial is the gold standard for research studies in biomedicine. It may be the best design in some cases, but is it the best design for sorting complex medical problems with multiple intersecting variables?”

One of the problems with cerebral palsy is that it is an umbrella term, defined as a group of permanent movement disorders that appear in early childhood caused by abnormal development or damage to the parts of the brain that control movement, balance, and posture. The pathways to a cerebral palsy diagnosis are rich and varied. They include stroke, preterm birth, being a twin, infections during pregnancy, head trauma, oxygen deprivation, or genetic causes. Types of cerebral palsy include spastic, ataxic, athetoid; quadriplegic, triplegic, diplegic, and hemiplegic. Diverse symptoms include everything from eating impairments, intellectual deficits, language disorders, spasticity, dystonia, pain and contractures, sensory processing issues and abnormal muscle tone to vision deficits, seizures, and learning difficulties.

This heterogeneity within the cerebral palsy population is partly to blame for the inability to effectively conduct randomised controlled trials on emerging therapies that may work on one specific type or symptom of cerebral palsy, but not another. Maybe the problem then, is not with the therapies themselves but with the all-too-broad umbrella of cerebral palsy.

The FDA threshold to approve drugs is only that they work correctly and their health benefits outweigh their known risks. Many of the alternate therapies we’ve chosen to explore for our son can elicit varied benefits depending on the individual. More importantly, they have no reported adverse effects.

If the foremost rule of medicine is first, do no harm, then surely the medical profession needs to wake up to the incredulous benefits that some of these emerging therapies, procedures and surgeries are offering to families with limited side effects.

Despite Selber’s theory that parents who commit to some of these  “alternate” surgical procedures based on Phase 3 Guilt often “regret it” upon Phase 4 Arrival, my experience is quite the opposite. Internet forums are alive with videos, photos, and vivid stories of gratitude about the exceptional results that some surgeons or therapists are achieving. The families who had the courage to go against the advice of clinicians and proceed with pioneering therapy and/or surgeries share these stories. These same families are full of encouragement for others facing the same fork in the road.

Some non-surgical alternatives—like laser therapy and intensive training blocks—demand huge commitment and discipline from families and children alike. Some are undertaken in conjunction with surgery. Perhaps medical professionals are hesitant to demand this level of commitment from families who are time, discipline, or resilience poor. Perhaps they’re hesitant to suggest therapies that may or may not be covered by public health or disability schemes. However, the appraisal of the individual family’s capacity to undertake these options is uniquely their own. Once any variability of these treatments is explained, families should be trusted to proceed based on their own valuation. Believe it or not, many families in the context of children with limited abilities are perfectly capable of making up their own minds.

Selber writes about the so-called Phase 4 of parental grief as an Arrival. But where have we arrived at exactly?

His words connote religiosity, salvation, a blanket acceptance of disability and all of its broad-spectrum deformities, deficits, and despair. Selber writes of this stage as a happy one, one of relief, a form of absolution. Perhaps what he refers to could instead—for many families—be the warm surrender of submission to a medical system that has failed to support a family’s search for something better—leaving the family exhausted, stressed, and on their knees. Which, in a circuitous turn of events, happens to be the ideal position in which to worship said medical system. Redemption if you wish, after a forbidden dance with idolatry.

Let us for a moment cycle back to Selber’s use of quotation marks concerning alternate “therapies.” The “Oxford Manual of Style“ refers to scare quotes as a tool to “hold up a word for inspection, as if by tongs, providing a cordon sanitaire between the word and the writer’s finer sensibilities.”

This use of emphatic quotation then perhaps reveals the true problem with many medical professionals working in the context of children with limited abilities. Unlike the parents of children with limited abilities, clinicians who work in the field of disability choose their vocation. Their motivations for doing so sit on a sliding scale from commerce to compassion.

In Bruce West’s book, “Where Medicine Went Wrong: Rediscovering the Path to Complexity,” he writes of six types of scientific personalities: sleepers, keepers, creepers, and leapers. In a nutshell, he writes that sleepers have generally given up the pursuit of knowledge; keepers are keepers of the status quo that generally object to new theories; creepers are mapmakers investigating the frontiers of science; and leapers are the individuals who create new laws, defy odds, and change the scientific landscape.

Pioneers or leapers in their field simply imperil the finer sensibilities of keepers or sleepers. Unlike the families of their patients, their finer sensibilities are still intact.

As parents, our finer sensibilities are a little like grief—quite simply a waste of our time. Discarded to make room for things that will yield results for our children within the context of their limited abilities.

Unlike clinicians, parents are unable to hold hope for our children at arm’s length in a pair of tongs. We cannot cordon sanitaire the daily reality of living with disability. Our sleeves are rolled up, our hearts are hungry, and our only motivation is a love that is—like any parents’ love—a force of nature.

Despite its attempts to reduce us to numbers, traditional FDA approved medicine is not precise. All kinds of surgeries, medicines, and therapies do not achieve the identical result in all patients. Each patient receives a variation on the predicted outcome. Dosages and prognoses vary depending on the attributes of the patient. Some patients, by sheer grit or luck, defy the odds and inspire us all.

This is what Selber and so many of his colleagues have forgotten—the power of the story in science. Clinicians are so busy trying to fit diagnoses under umbrellas, evidence into statistics, and grief into phases, that they are forgetting the true nature of their work: healing human beings. And, good lord, human beings are gloriously heterogeneous. After all, arrival in the sense Selber appears to connote—an arrival of redemption— is based on nothing more than a great story backed by zero scientific evidence.

So while there may be many families who do cycle through a predictable pattern of grief, expecting one limits the capabilities of clinicians. I cannot see any value in sharing said pattern with other clinicians and educating them to expect it without mentioning that there are also outliers, the exceptions, the leapers, families defying the odds.

Dr. Norman Doidge writes in his book “The Brain’s Way of Healing“: “To those who only worry about raising false hope I say, I wish that false hope was all we had to worry about . . . we must also worry about false despair. . . . The harm done by false hope is familiar, serious, but often transient. . . . But if the patient has a condition that might have been helped by one of these novel approaches, the damage caused by a clinician mistakenly telling a person nothing can be done risks condemning that person to a permanent loss of what would have been a fuller life.”

For clinicians wondering how to remodel their expectations of familial grief, I would say, expect none. The best clinicians and therapists make a heartfelt valuation on the family’s needs, successes, and qualities, and then meet them exactly where they’re at. They view families as equal partners and allow space for the relationship to be mutually provocative, caring, and honest. They inform themselves and their patients about alternative treatments and the variety of results they can yield.

Don’t drip feed information to us. We won’t flinch at the truth—we’ve heard worse. Most of us have been subject to lines like: “You’re son probably isn’t very bright, you just need to get over it”; “There’s nothing wrong with him, you just seem like a neurotic mum”; “You just need to accept that your son is disabled”; and we’ve also been laughed at when inquiring about alternate therapies. And just for the record, we accept disability more than you’ll ever know. What we won’t accept is ignoring any opportunity to enable our children.

The best clinicians and therapists also stay curious. They realise that sometimes they can learn something not just from a journal or a conference or a randomised double-blind trial, but from their intuition and the people sitting in front of them that are quite simply on fire with love for their children.

If you want to be a truly excellent clinician, then watch out for the good stories. Become a part of them. You’ll spot them by the steel in the souls of their protagonists. The outliers will be the ones who provoke you and resist you. Fight with us, not against us. Burn with us. Expectations for our children must change, and the clinicians who act as the gatekeepers of this change must open not only their minds but also their hearts.

Maybe only once clinicians recalibrate their expectations of familial feelings in the context of children with limited abilities will more of them remind us of the wonder of science and the “importance of opening, not just closing, questions” . . . and less will cause nothing but grief.

The author is more than happy to help anyone interested with any questions that they have. She can be reached at monique.webber@gmail.com