I will soon celebrate my 6th year anniversary with Nemours Children’s Hospital, and am grateful for the almost 6 years of learning from my patients, families, and colleagues in this state of countless underserved children and families. The last social worker who supported our ear, nose, throat and audiology division (she moved away due to family reasons), taught me something that years of medical and surgical training never taught me. Instead of labelling individuals with a “disability” for a variety of medical conditions, diagnoses, and developmental delays, consider the word “differentbilities”.
I still remember the day I got to participate in the interview process of this amazing social worker, who herself on appearance had physical challenges and an obvious short stature. It is because she shared with confidence, when I asked if ever and how her physical “disability” may interfere with her work, that she did not have any disabilities but “differentbilities”. Since that day many years ago, I have been humbled and I changed my perspective on all the patients I care for whose external appearances and underlying health conditions do not fit what we would all refer to as “normal”.
Let me start with the example of children with Down Syndrome. As I have always had a very special place in my heart for this group of children, after arriving in Orlando and building my team of ENT specialists and pediatric audiologists, I had the privilege of serving 2 years on the board of an organization called Down Syndrome Association of Central Florida (DSACF), that serves over 1,200 individuals and families with Down Syndrome. These children have very unique facial features everyone generally recognizes, although each has his or her own beautiful expressions.
During medical and surgical training, I was never taught the challenges faced by expecting parents and parents of a child with Down Syndrome. I was never taught how to approach these patients holistically, that the functional capacity would be vast, and can change significantly over time. Most of all, I need to admit that early on in my career, I too had conscious and unconscious bias and lower expectations for these children based on their external appearance. Early in my career I used knowledge I was given during training, focused primarily as a pediatric ENT on whether these children needed ear tubes for chronic fluid, decreased hearing, and expected speech delay due to just having trisomy (extra chromosome). Now 17 years after fellowship training, through my intimate relationships and conversations with parents, years of caring for these loving, yet stubborn and ridiculously strong patients and their ENT issues, I have learned so much and can better serve patients and families beyond their “medical issues”.
I have learned that when you meet one patient or child with Down Syndrome, you have met one child, not a “stereotype” of children, but an amazing group of humans with “differentbilities”. The same is true for all my patients, medically healthy or with complex underlying medical conditions. Each child, regardless of cardiac, genetic, neurologic, or any other organ system abnormalities, has the same need for unconditional love, attention, and human touch by not only their parents and family, but everyone else. Each child is deserving of your biggest smile and warmest embrace, your reassurance that you will not hurt them, and that you understand it must be “scary” to be them, to face strangers and not be in control.
The most humbling part of my journey as a surgeon dedicated to children, is to think about how my patients must feel when they can’t verbally communicate, express their feelings, emotions, pain and frustration, and ask questions. Often these children understand what is being said, our tone, procedures described, and I bet they can read facial expressions just as all human newborns and infants are capable of doing as an evolutionary necessity for bonding and survival. How horrible, and unthinkable, when your body betrays your mind, and you lack normal bodily functions, the ability to control your arms, legs, neck, hands, or any other parts that we all take for granted, when you can’t eat by mouth or taste but must be fed by a tube into your stomach…every day, every clinic, I imagine what it feels like to be the patient in front of me.
Even though I can’t waive a magic wand and immediately reverse whatever the physical issue the child endures, I know what is needed from me. Introducing myself to the child, speaking with a gentle and softer voice, slowly, holding their hand, smiling at them, and even touching their face and stroking their hair. With their parents and caretakers, I have learned the gift of acknowledging their struggles as they give up vacation, any “breaks” from the intense chronic care provided to their child with “differentbilities”, the immense pressure to keep their child “healthy” which just means staying out of the hospital and health care system as much as possible. I have learned to remind these parents to let go of the guilt they feel towards their children who are different, to love themselves first, to know that this was a journey they didn’t choose for themselves or their child, because it is harder than anything else one could endure as a parent. These families struggle to keep up with all the doctor’s appointments, tests, therapy appointments, even special needs education. I was never taught how to care for humans, children, and families in the most humane and impactful way that I now understand is what they seek.
The tragedy is the ignorance due to the lack of training, desensitization, and the overwhelming productivity pressure based health care doctors are forced to provide, which does not allow us to listen generously to our patients and families.
Back to my patients and what they have taught me. I have learned that speech acquisition and learning and development in children do not have to be “linear”. Some of my patients received years of what seems to be unproductive speech therapy, with little progress in vocabulary. Then one day, after seeing them for a follow up every 6 months or so, you meet a child who is now 7 or 8, and she may sit there and converse with you. Better yet, she may look up and read the sign posted on your exam room wall, while you are in shock because you assumed this child with Down Syndrome, based on their past, could not possibly accomplish this.
You see, what I have learned is that anything is possible for the future of any child, no matter what their limitations are today. You and I can’t predict, but what we can choose, and must choose, is to provide guidance, support, therapies, and both medical and non-medical help to children so that we give them the best chances to thrive in spite of, not because of, their “differentbilites”. The ability to sing, dance, swim, play sports, draw, write, and express their humanity in all ways possible, are limited by the rest of the world, and those who made a judgment a long time ago based on what they saw in the physical form of a human being, even in a child. We all have disabilities, they just tend to be invisible to those who don’t know us. True disability is the inability to see the beauty in all others regardless of race, gender, color, ethnicity, physical deformity, speech and other developmental delays.
I am still learning, and I dedicate this blog and thank every patient and family who took the time to teach me what “worked” for their child, so that I may share with other families. For children with Down Syndrome, “mainstream” schooling seems to have been the most effective opportunity that helps them make the greatest speech improvement. Look for "differentbilities", you will be amazed.