Uploaded:  4/27/09

Author:  Erin
Coping Lessons from a Reed
by Erin
A very large Oak was uprooted by the wind, and thrown across a stream. It fell among some Reeds, which it thus addressed:  "I wonder how you, who are so light and weak, are not entirely crushed by these strong winds."  They replied:  "You fight and contend with the wind, and consequently you are destroyed; while we, on the contrary, bend before the least breath of air, and therefore remain unbroken."  Aesop

A reed is an aquatic grass that grows in wet areas, such as marshes or along the banks of rivers, streams and lakes.  Reeds thrive under conditions that are challenging for most plants; therefore, parents can learn much about coping with the challenging caregiving needs of a child with complex needs by studying the survival strategies of a reed. 

Adjust to Surroundings

Reeds are very adaptive plants, allowing them to thrive in both damp ground and standing water. 

Similarly, parents of a child with complex needs often have to adapt to multiple environments, each of which presents different physical and emotional challenges.  In addition, the parent frequently finds herself playing different roles in each environment, such as parent, advocate, home therapist, home educator, and home nurse, in order to effectively meet the child's and the family's needs. 

My daughter has multiple and severe disabilities, including cerebral palsy and visual impairment, all of which make it hard for her to interact with the world around her. Throughout the week, I am likely to bring my daughter to parks, stores, doctor or therapy appointments, and school, and I find that I have different responses to the individuals I meet in each location. 

Because of her condition, my daughter frequently acts sleepy in her adaptive stroller.  Sometimes I am an educator to other parents, mentioning the physical reasons for her sleepiness.  Other times I am an advocate to school staff members, discussing her previous night's sleep and reminding them of strategies to help her cope when she is sleepy.  Finally, at times, I am a concerned parent and advocate to doctors and therapists, discussing aspects of her health that might be contributing to her sleepiness and asking for strategies on how to improve her sleep.

Avoid Harsh Conditions

Reeds thrive in neutral waters.  Although reeds are able to adapt to various growth conditions, they grow better in fresh water and prefer standing water to strong currents, which can break their vertical stems.

Parents of children with complex needs can also find it helpful to avoid overly harsh conditions and instead locate more neutral surroundings to help their children thrive.  That is, effective caregiving can be hindered both by negativity and unrealistically positive expectations from other parents, nurses, doctors, therapists, and teachers. 

The "gloom and doom" associated with negativity erodes hope.  As hope fades, so does a parent's energy for seeking out the best care for her child.  Without hope, despair and helplessness take the place of joy and advocacy.  On the other hand, unrealistic optimism also can derail caregiving by failing to spark the drive needed to ensure the child's best interests are not overlooked.  Furthermore, when positive expectations are not realized, the confusion that results creates helplessness and ultimately despair. 

The need to avoid negativity became apparent for me when my daughter's first Educational Specialist from Early Intervention, although willing to problem solve about my child's challenges, could not see her potential.  Indeed, during one session she informed me that there was nothing more she could do for my child without a medical degree.  When I suggested a focus on communication, she retorted that that my child would never be able to communicate like her big sister. 

While I certainly did not expect her to break out in song, I had seen my daughter consistently activate a motivating multi-sensory switch and I hoped that we could help her find her own way to communicate.  Thankfully, we were given the opportunity to change to a much more positive Educational Specialist, and with her help my daughter did learn to press a switch to communicate "more."

Establish a Strong Root System

Reeds take time to create the necessary supports for growth.  Reeds spend two to four years as grass and incorporate the previous year's growth into their root system to establish a very dense root system that helps them thrive under challenging conditions. 

Parents of a child with complex needs can also find it helpful to establish a strong support system, because overwhelming emotions, both positive and negative, need to be shared with others in order for a parent to function.  Immediate family and close friendships established beforehand are the first relationships available.  However, friends and family who are not directly experiencing your life may not always be sure what they can do to help during stressful times and may not appreciate "inchstones" that are achieved with much enthusiasm. 

Therefore, parents of a child with complex needs may also need to expand their support networks by seeking out parents of children facing similar challenges in local support groups or online communication forums.  These parents can provide a wealth of information about diagnostic procedures, treatments, and adaptive products, all of which can make living with a child with complex needs easier.  They have also experienced the same emotional rollercoaster ride, and can often provide valuable insight about upcoming peaks and valleys that might be experienced along the journey.  They can also help pinpoint when it might be useful to seek additional support from mental health professionals or therapists, such as during a particularly overwhelming phase of the journey.     

Like many parents, however, we struggled with asking for support because we did not want to burden others with the paralyzing emotions we were experiencing.  We wanted to withdraw into our world, feeling apprehensive that we might crumble when we saw a healthy child our daughter's age, a sight that instantly reminded us of current and future losses.  However, our connections to our family and friends were essential to our continued functioning because they helped make sure we kept doing many of the activities we enjoyed previously.  At night, when the house was quiet, I discovered the additional benefits associated with connecting with online parents facing similar challenges.

Ultimately, our connections with both local family and friends and online parents helped us to manage the uncertainty and strong negative emotions we experienced.  We were able to develop greater strength and experience joy in our lives, day by day, month by month, and year by year. 

Take a Stand

Reeds use their supports to grow to their full potential over time.  After reeds establish their root systems, they grow to full height, achieving their maximum height after five to eight years.

At first, parents of a child who is medically complex may rely on the knowledge of individuals in the medical field to understand their child's struggles and how best to address them.  However, over time, parents may begin to expand their knowledge base as they gain more and more experience playing home therapist, home educator, and sometimes nurse for their children.

Parents can learn to become detectives using their keen observational skills to decode clues about their child's functioning, ultimately improving the child's health and quality of life.  At this point, parents can learn to skillfully collaborate with the professionals who work with their child, trusting "parent instincts," while also capitalizing on the wealth of information the changing educational and medical field has to offer.  They can take a stand on issues, diagnostic procedures, or treatments that can be very important for ensuring their child's health and quality of life. 

The importance of gathering strength and taking a stand was apparent when my daughter started having daily screaming episodes and breath-holding spells.  Her physicians were stumped, however, so I continued to play detective by carefully observing and logging what happened before, during and after each episode. 

After months of careful observation and talking to parents online, we were convinced that the episodes were related to difficulties emptying her bladder, but it would take months to get an appointment with a urologist.  Because I was unwilling to witness my child experience extreme pain for any longer, I used my connections with other specialists to obtain an earlier appointment.  My efforts were rewarded when my daughter was quickly diagnosed with urinary retention, and regular urinary catheterization eradicated the screaming episodes.

Bend With the Wind

Reeds are very flexible.  The wind blows through their leaves and waves their fluffy plumes of flowers to spread their seeds. 

Parents of children with complex needs can also find it helpful to be flexible when facing similarly strong forces that they cannot control.  Indeed, in many cases, an uncontrollable event or condition is the reason they began caring for a child with complex needs. 

However, in the beginning of their journey, faced with overwhelming emotion and confusing conditions, parents' first coping mechanism is to react against the negative forces that change their perception of their child and the future.  When the strength of those forces is recognized, parents can initially feel helpless and powerless in their daily struggle.  Thankfully, however, once parents seek out and develop a greater support system, they can both learn about how others have managed those strong forces and gain their own direct experience managing both small and large unexpected issues that develop in their journey with the child over time.  

For example, parents might learn about stress-relieving behaviors, such as finding time alone to pray, create, write and exercise.  Furthermore, with increasing experience, parents might learn to become more flexible and more proactive agents of change.  This flexibility, in turn, can help parents of a child with complex needs accept that they may not be able to control some changes to their child's health or functioning, but instead, they can do their best to channel the waves so that their child's health and quality of life is better preserved.

Resprout Quickly after Being Burned

Reeds are very resilient plants.  If their roots are protected by a layer of soil, mud or water, a fire cannot destroy them.  Shoots that are knocked over can take root. 

Parents of children with complex needs can also find it helpful to be resilient while managing caregiving responsibilities.  Often, once one symptom is effectively managed, another surfaces that once again requires creative thinking in order to develop the best solution.  The constant change in itself is enough to tap a caregiver's emotional resources.  Unfortunately, the emotional, physical, and financial costs of caregiving are immense and very often the resources for lessening these burdens are limited. 

In order to meet their own and the child's needs, parents must frequently use stubborn determination to navigate not only through the medical system, but also through the financial support systems available, including state-funded medical or social services and insurance.  The ability to be resilient and take on the system after a necessary service has been denied is particularly important.  Furthermore, knowledge of alternative forms of funding for necessary procedures or materials is also necessary when a well-justified need is ultimately denied by the primary funding source after several appeals.

The importance of being resilient and finding alternative funding to improve my daughter's functioning was reinforced by a state-funded medical therapy agency.  While my daughter's diagnosis qualified her for therapy services from this agency, her services were gradually reduced because she was not making quick progress.  My daughter was often unwilling to participate in these sessions anyway; therefore, I arranged for coverage of Aquatic Physical Therapy Sessions at a local Therapeutic Pool.  My daughter thoroughly enjoys these sessions and has made great progress during them.  

Support Others

The ability of reeds to withstand unfavorable growth conditions on the edges of rivers and lakes can both protect the banks from erosion and provide essential ground cover for waterfowl inhabiting the area. 

When parents of children with complex needs share their experiences coping with challenging caregiving situations, they ultimately provide essential support to families facing similar challenges. 

Very early on, I benefited from the kind support of online parents who selflessly took time away from their caregiving efforts to help me cope with seemingly insurmountable challenges.  It is with this in mind that I chose to share the coping lessons I have learned from studying the survival strategies of reeds.  I can only hope in some small way it will help parents facing similar caregiving situations feel more powerful and hopeful during a confusing yet joyful journey. 

Erin is a stay-at-home Mom to Brooke, a very sweet, determined, non-verbal, non-mobile and 100% G tube fed child.  Brooke suffered severe oxygen loss and reduced blood flow around the time of her birth, which caused chronic kidney failure, severe brain injury, microcephaly, cortical visual impairment, mixed cerebral palsy, sleep apnea, epilepsy, spastic bladder, and reflux.  Erin has also been blessed with two very caring and entertaining siblings for Brooke, six-year-old Katherine and two-year-old Ethan.

Erin documents how Brooke interacts with her siblings on Adapted World.

Erin has a PhD in Clinical Child Psychology and although she is currently not practicing she draws upon her experience when trying to ensure Brooke obtains the services she needs.