A relationship between a family, a child, and that child’s therapy team is critically important to that child’s progress. It is a complex relationship requiring trust, compassion, communication, and teamwork. A family who is faced with a child who cannot or will not eat may face a variety of emotions. Their therapy team, which may include a speech therapist, dietitian, occupational therapist, social worker, physician, or other specialists, must often function as a combination of tour-guide, counselor, translator, friend, and sounding-board. For those readers who are familiar with the essay “Welcome to Holland”, consider your therapy team the welcome wagon.
This close relationship between family and therapist lends itself to deep connections within the therapeutic setting. I’ve been blessed to share in the celebration of joys and the mourning of struggles alongside many families. From each experience I feel that I learn more than I did in all my traditional schooling. I’d like to share one of these experiences and the lessons I learned along the way. All names and some details have been changed to protect patient privacy.
Chapter One: The Rookie
I met Sarah and her mother during my first year of clinical practice. I had recently been placed in the position of taking over our oral-motor and feeding clinic from a senior therapist who had left for private practice. Being young and optimistic, I felt pretty good about the handful of experiences under my belt. I had snatched up every opportunity in graduate school to learn more about pediatric feeding disorders (one 2-hour lecture given by a PhD student in my adult dysphagia class and a week-long elective on pediatric feeding disorders given over the break between spring and summer semesters - see my post on choosing a feeding team with real-world experience). But even the education provided to me by a top-ranked graduate program could not possibly prepare me for the real work of treating children with feeding delays and their families. I was blissfully unaware of this and jumped right in.
Sarah and her mother appeared on my schedule as a new evaluation in our feeding clinic. The reason for referral stated “trouble with eating and weight gain”. So, not really sure what to expect, I welcomed them into the clinic room and asked how we could help. Sarah’s mother explained that they had experienced difficulty feeding Sarah for the past 2-3 months. Now, Sarah was almost 6 months old and had stopped accepting anything by mouth, save for an occasional precious ounce of formula when she had almost fallen asleep. Her parents spent up to 90 minutes every 4-5 hours trying to convince Sarah to accept something, anything from the bottle. Almost every feeding ending with Sarah arching, crying, screaming, and ultimately falling asleep from pure stress and exhaustion, only to awake just in time for another round. Her doctor had recently placed an ng-tube (nasogastric tube) and the family was weighing the pros and cons of a more permanent g-tube (gastronomy tube). Sarah’s mother looked exhausted, physically and emotionally, and barely made eye contact while recounting their story.
The very first thing I said was to suggest that they no longer allow Sarah to eat while she was sleeping... I almost cringe to write that down.
I listened to this woman recount her story of being unable to feed her baby and I responded by telling her that something she was doing was wrong. And moreover, I took away the one moment where she was probably experiencing fleeting hope, joy, and success in feeding her child. All because I had read in a textbook that feeding a near-sleeping child was undesirable.
Lesson #1: Meet a family where they are.
Lesson #2: Build a treatment plan on a foundation of patient/family strengths rather than focused solely on needs and weaknesses
Acknowledging a family’s starting point is just as important as identifying their goals for treatment. I listened to this family’s story and immediately identified things to “fix”. What I should have done was identify their strengths first. Helping a family to identify those things that they are doing well can help them to build on those strengths and gain confidence in their abilities and those of their child. A family who is reminded of their strengths may also feel a greater trust towards their therapy team because they feel valued and respected as a vital member of the team.
In the years since I first met Sarah’s family, I have found this approach to be the most natural and I have found that it empowers families with the knowledge that they DO have the tools to help their child. An empowered family means better buy-in and follow-through when creating therapeutic home programs. An empowered family is better equipped to weather the ups and downs of their child’s journey and feels more confident in advocating for their child.
This close relationship between family and therapist lends itself to deep connections within the therapeutic setting. I’ve been blessed to share in the celebration of joys and the mourning of struggles alongside many families. From each experience I feel that I learn more than I did in all my traditional schooling. I’d like to share one of these experiences and the lessons I learned along the way. All names and some details have been changed to protect patient privacy.
Chapter One: The Rookie
I met Sarah and her mother during my first year of clinical practice. I had recently been placed in the position of taking over our oral-motor and feeding clinic from a senior therapist who had left for private practice. Being young and optimistic, I felt pretty good about the handful of experiences under my belt. I had snatched up every opportunity in graduate school to learn more about pediatric feeding disorders (one 2-hour lecture given by a PhD student in my adult dysphagia class and a week-long elective on pediatric feeding disorders given over the break between spring and summer semesters - see my post on choosing a feeding team with real-world experience). But even the education provided to me by a top-ranked graduate program could not possibly prepare me for the real work of treating children with feeding delays and their families. I was blissfully unaware of this and jumped right in.
Sarah and her mother appeared on my schedule as a new evaluation in our feeding clinic. The reason for referral stated “trouble with eating and weight gain”. So, not really sure what to expect, I welcomed them into the clinic room and asked how we could help. Sarah’s mother explained that they had experienced difficulty feeding Sarah for the past 2-3 months. Now, Sarah was almost 6 months old and had stopped accepting anything by mouth, save for an occasional precious ounce of formula when she had almost fallen asleep. Her parents spent up to 90 minutes every 4-5 hours trying to convince Sarah to accept something, anything from the bottle. Almost every feeding ending with Sarah arching, crying, screaming, and ultimately falling asleep from pure stress and exhaustion, only to awake just in time for another round. Her doctor had recently placed an ng-tube (nasogastric tube) and the family was weighing the pros and cons of a more permanent g-tube (gastronomy tube). Sarah’s mother looked exhausted, physically and emotionally, and barely made eye contact while recounting their story.
The very first thing I said was to suggest that they no longer allow Sarah to eat while she was sleeping... I almost cringe to write that down.
I listened to this woman recount her story of being unable to feed her baby and I responded by telling her that something she was doing was wrong. And moreover, I took away the one moment where she was probably experiencing fleeting hope, joy, and success in feeding her child. All because I had read in a textbook that feeding a near-sleeping child was undesirable.
Lesson #1: Meet a family where they are.
Lesson #2: Build a treatment plan on a foundation of patient/family strengths rather than focused solely on needs and weaknesses
Acknowledging a family’s starting point is just as important as identifying their goals for treatment. I listened to this family’s story and immediately identified things to “fix”. What I should have done was identify their strengths first. Helping a family to identify those things that they are doing well can help them to build on those strengths and gain confidence in their abilities and those of their child. A family who is reminded of their strengths may also feel a greater trust towards their therapy team because they feel valued and respected as a vital member of the team.
In the years since I first met Sarah’s family, I have found this approach to be the most natural and I have found that it empowers families with the knowledge that they DO have the tools to help their child. An empowered family means better buy-in and follow-through when creating therapeutic home programs. An empowered family is better equipped to weather the ups and downs of their child’s journey and feels more confident in advocating for their child.
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