Learning to Live with Labels
by Erin

I have a love/hate relationship with labels. I'm not talking about food labels (although this relationship would apply to them as well), but medical or educational labels placed on my daughter.  Although it irks me when labels limit perceptions of her functioning, I do appreciate that labels can simultaneously help her obtain necessary services that improve her quality of life or encourage her to reach her potential.

Managing Crises with Labels

Through no fault of her own, my daughter experienced a traumatic birth that affected her initial survival and ultimately her long-term functioning.  At birth, in addition to receiving a bracelet that identified her as a new baby girl in our family, she also received the label hypoxic ischemic encephalopathy with multi-organ failure.  This label told clinicians in charge of her care both what had happened to her (hypoxic ischemic = reduced oxygen and blood flow) and what to expect (encephalopathy = brain injury, multi-organ failure = cardiac/respiratory arrest, liver failure and kidney failure).  These are just a few of the many labels clinicians found while hovering around her Plexiglas bassinet reviewing her charts.  My daughter's many labels encouraged identification of both any current medical instability and treatments to help stabilize her vital signs and prevent further setbacks in her functioning. 

Having been trained to conduct psychological assessments on children for educational and therapeutic purposes, I knew firsthand how important labels are for formulating appropriate treatment plans.  However, as a parent, these medical labels were sometimes very difficult to process both intellectually and emotionally.  At other times, these labels were irrelevant, because in my eyes my daughter was like any other newborn baby.  To thrive she needed a sense of belonging, the warmth of a loving touch and as much chance to succeed and be as happy as possible. 

Forming Impressions with Labels

During her short lifespan, my daughter has continued to collect medical and educational labels that have a strong impact on those who work with her.  Very often the labels she has collected predispose the clinician to a narrow perspective on her functioning and her potential, especially if the clinician takes the time to read her ever expanding list of diagnoses before meeting her. 

While she was hospitalized as an infant, I would listen to a clinician use her diagnoses to make predictions.  Unfortunately, her many diagnostic labels suggested a poor prognosis, a need for medical technology, and a potential future that would include institutionalization because of her demanding care needs.  I would listen as intently as possible, trying to take in all the information I could without being overwhelmed by the gloom and doom or negative energy inherent in these predictions.  Still, while I listened, it was hard not to be distracted by my baby girl, who was either clutching my hand with a death grip or tracking the mobile spinning over her head. 

Later, after she was discharged, waiting in the exam room holding my happy baby, I'd witness a clinician almost stop dead in her tracks when she observed my daughter subtly interacting with me.  This interaction was an unexpected sight, because having read her file, the clinician likely expected a child in a vegetative state.  If the clinician was aware of this noticeable reaction, I'd then hear the logical explanation that my daughter is doing so much more than expected given her MRI, her history, or whatever other depressing information they had gleaned from the labels in her file.  Her most supportive clinicians would openly marvel at their observations, in many cases acknowledging that they could never have predicted this type of outcome.  The positive energy and recognition of my daughter's worth was particularly palpable when a candid clinician, who had not seen my daughter since she was in the Neonatal Intensive Care Unit, thoughtfully shared that it was helpful to witness this discrepancy between my daughter's reports and her behavior.  She shared that seeing my daughter happy answered nagging doubts that surfaced while she made heroic efforts to save a similarly dusky floppy newborn whom the odds suggested would have no quality of life. 

In direct contrast, not all clinicians have been able to conduct keen observations and share thoughtful reflections. That is, clinicians who were too focused on the charts in their hands as they entered the room often missed important interactions.  Instead, consumed by negative energy flowing from her chart, they pointed out only the deficiencies that were consistent with my daughter's diagnoses in their area of specialty.  They treated her with blinders on, ignoring requests to change a treatment that was contributing to either observed deficits in functioning or a reduced quality of life, while insisting instead that the current treatment was doing its job. 

A stubborn reliance on labels that predispose clinicians to see only the deficits in my daughter's functioning always leaves me with a bitter aftertaste.  In order to neutralize the bitterness and blow off the negative energy, I have to exhale and step back so that I can see the big picture.  To do this, I remind myself that these very same labels that compartmentalize her according to deficit and discipline also help my daughter receive the services she needs to improve her functioning, maintain her quality of life and provide our family with essential supports. 

When that fails to alleviate my defensiveness, sometimes I can shrug off the negativity and gain perspective by thinking of the many families who are still searching for a helpful diagnosis.  However, when I'm particularly frustrated with a clinician's tunnel vision, I remember explicitly how difficult it was for us to get the necessary equipment and support we needed before my daughter received a particularly powerful label such as an official cerebral palsy diagnosis. 

Opening Doors with Labels

It was clear to us from the day we brought our daughter home from the hospital--with an unused peritoneal dialysis catheter in her side and a nasogastric feeding tube in her nose--that she would face challenges that would require a tremendous amount of support for her survival.  Indeed, it wasn't long before it came time to find our floppy one-year-old girl a more expensive and supportive medical stroller that didn't require towels, pillows, or anything else we could find to wedge in the sides so she would not lean like the Tower of Pisa.  When we researched the funding available to purchase such a medical stroller, a major state resource declared that she was not technically disabled even with chronic kidney failure and infantile cerebral palsy listed as her diagnoses.  Without the label of disabled she was not eligible to receive support for medical equipment. 

Our entire family was dumbfounded to learn that a child who could not feed herself, sit up, crawl, walk, or talk like most children her age was not considered disabled.  Then I learned that she did not have the right diagnosis to be considered disabled; that is, her diagnosis of infantile cerebral palsy was not permanent enough to indicate the presence of a long-term disability and the need for expensive medical equipment.  Once she received her official cerebral palsy diagnosis, however, our local regional center was able to qualify her as permanently disabled and in need of their support for life, which, in turn, opened the door to more supportive state resources.  With the correct label in place, our family was able to obtain better coverage for required medicine, medical equipment, nursing, and in home support services necessary to keep our sweet girl as comfortable as possible with us at home.

Although the correct label was enough to qualify my daughter for additional supports, we still struggled to get her a more supportive medical stroller because her therapists at the time were concerned that insurance would likely deny a replacement wheelchair if she grew out of the adaptive stroller too soon.  When her therapists would not request an adaptive stroller from our insurance, we once again utilized one of my daughter's powerful labels to obtain needed medical equipment.  Specifically, when we asked for advice from a local family, who are fellow members of an online group for parents of children with the diagnosis of hypoxic ischemic encephalopathy, we discovered that they were generously willing to let us borrow their son's old adaptive stroller.  Not too long after our discussion, our daughter was supported by their son's hand-me-down adaptive stroller, which met her needs for approximately the next 18 months until it was time for her to order her own seating system. 

Creating Community with Labels

Paradoxically, although I truly hate collecting labels (especially the most recent addition, refractory epilepsy) because of the negative energy and the gloom and doom goggles they create for individuals, my experiences have repeatedly proven that labels have many positive effects.  For example, they have served to develop a community of parents and individuals who can provide additional necessary support and positive energy because they are facing and have successfully managed similar challenges. 

Even a simple label such as having a child with special needs can foster support.  That is, all parents of children with special needs walk down a dimly lit and less trodden path while trying to figure out where to safely tread.  Parents of children with special needs are trying not to get too frustrated along their route by avoiding stepping in wasteful or overly confusing information that is dished out by otherwise well-meaning individuals who may be consumed with negative energy.  Parents of children with special needs are also trying not to let their spirits get soaked by avoiding trudging in puddles created by the rain of disdain or the pitter patter of pity from individuals who are unable to understand the child's worth in joy alone.  Finally, parents of children with special needs are trying to maintain their focus by pausing to reflect on their options instead of struggling and sinking into the quick sand created by inefficient and sometimes incompetent care and support systems. 

In most cases, other parents who have taken a similar path provide major route markers that show the way within the system to obtain services the child needs. These signs provide moral support and flashes of hope along the way.  Namely, seeing the steps other parents have taken provides reassuring evidence of motion toward a preferred destination.  Similarly, hearing the perspective of others empowers parents by broadening both the road and their horizon, ultimately uplifting their spirits so they can look up and enjoy the view along their journey.  All of these pointers help restore necessary positive energy to a parent who is confused and overwhelmed by a new diagnostic label. 

Along my route as a parent of a child with special needs, I have seemingly veered away from a deceptively smoother main path onto a bumpier path for parents of children with more specific medical conditions.  In those moments, I can feel discouraged and envy the challenges on the main path that seem superficially simpler the farther I travel away from them.  I become nostalgic for a time when I did not require the support of parents of children with complex medical needs to watch out for sinkholes and low lying branches that can easily trip me and land me flat on my face in the mud on my new path.  Eventually, however, once the medical crises have been managed, my less trodden path converges with the main path once more, ultimately reminding me that my overall route is more alike than different from the route of other parents of children with special needs. 

As I gain confidence to discover and share my own strategies for coping with challenges and restoring positive energy, I reflect on the fact that each parent of a child with special needs and the labels his/her child collects helps further clear and mark the way for those parents who walk behind them on the path less traveled.  Through such reflection, I have come to believe this is part of the reason my daughter and I are walking the path we are on. 

I know I will never celebrate the fact that my daughter needs medical and educational labels, and I certainly do not look forward to the next label that will be added to her collection.  Nevertheless, witnessing the support they provide to my family and other families of children with special needs has helped me recognize that labels carry the meaning we give to them.  For this reason, I am definitely learning to live with labels.

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 Author:  Erin
 Date Uploaded:  7/11/2011