A few years ago, I attended a function for children and adolescents with type 1 diabetes (T1D) and their caregivers. A breakout session on type 1 at school was packed with parents of newly diagnosed children, most wearing the familiar look of worry and exhaustion that us veteran parents remembered all too well. These weary warrior newbies needed an empathic community and substantive guidance.
The panel was composed of a seasoned school counselor with type 1 herself, and two school nurses. Collectively, their years of experience were a treasure trove of information as to managing the complexities of type 1 at school. Despite their expertise, the fear and trepidation among the attendees were palpable. I felt like exclaiming “group hug!” The parents, some of whom had devoted grandparents along for support, seemed to have two things in common: fear, and a strong skepticism over whether it was all going to work out OK for their children.
How could school waters be tested with the uncertainties of bus travel to and from, recess, gym class, standardized testing periods, and school trips? For those families in which there was not a full-time nurse on staff at school, the worries were significantly amplified. How would oversight of insulin dosing occur and who would help their children during a dangerous high or low?
Sitting amid these parents I could relate to their vulnerability as I recollected the first nerve-racking days when my eleven-year-old son returned to school after his initial hospitalization. I could remember needing to catch my breath when I would see the school name on my caller ID. Most calls were that a low was being handled and not to worry. Other times, it was a request that I come and pick up my son rather than have him ride the school bus home with a persistent low. The best calls were to say that he had given his own injections and was showing more and more independence each day. With the right helpers in place, the scaffolds were being erected for him to become confident, strong, proud, and as self-sufficient as feasible for a young boy with a chronic condition.
The first time we saw our endocrinologist in an outpatient setting just weeks after diagnosis he asked our son, “Hey, are you going to diabetes camp this summer? You’ll love it!” I thought, what could diabetes camp possibly be? It sounded like the least fun camp imaginable. There was just one other type 1 child in our son’s elementary school. How many kids could there be to fill up such a camp?
Fast forward to the next summer after our son’s diagnosis as we arrived at the aptly named, “Camp Freedom” to find a lively campground with hundreds of kids and teens with type 1 diabetes milling about. We could spot insulin tubing, patch pumps, and glucose monitors on arms, legs, and bare midriffs. I saw a teenage girl with her diabetes alert dog. Asking her about her beautiful companion with his official vest, she shared that she had hypoglycemic unawareness. I did not know what to say. To have someone unable to feel an acutely dangerous low was unfathomable to me as a parent. Never had I felt as much love and respect for an animal as that diabetic alert dog steadfastly at his owner’s side.
As each camper lined up at check-in, an endocrinology nurse or doctor would obtain precise information as to daily insulin amounts, pump settings such as insulin to carb ratios, basal schedules, and correction factors. Adjustments were made to err on the side of caution to prevent exercise-induced hypoglycemia with the many activities for recreation and sport yet to unfold. As the days would go on, if a child was running too low from fun offerings such as zip lining, swimming, and gaga, further adjustments would ensue by the expert staff who monitored blood sugars day and night.
During the six-night sleep away camp, no cell phones were permitted so this was the first time ever in our son’s life that we could not communicate with him for an extended period. However, laying my head on the pillow on his first night away and realizing the peace of mind that the 2 AM finger stick and countless other checks throughout that long week were being properly supervised resulted in a feeling of immense gratitude for the nurses, doctors, and camp counselors. What other kind of camp could offer parents this type of reassurance and respite from caregiving while creating fun for their kids?
One of the most famous organizations in the nation, The Barton Center for Diabetes Education, Inc., offers girls, boys, and co-ed camps year-round. They hope to provide an in-person camp experience this summer and are closely monitoring COVID to determine the safest numbers of campers to have onsite. Other camps are running virtual programs.
For children and teens who have felt isolated or misunderstood since their diagnoses, diabetes camp often represents the very first time they feel joyful and normal again. Surrounded by hundreds of kids with the exact same condition, the solidarity that comes from a shared experience is the fastest path toward normalizing and acceptance of one’s condition. Beyond acceptance, the cultivation of grit and perseverance, in line with the writings of Dr. Angela Duckworth of the University of Pennsylvania, are key skills that any veteran T1D will tell you matter. This sense of plugging away or what Dr. Duckworth calls, “deliberate practice,” combined with a positive “growth mindset” as outlined by Dr. Carol Dweck of Stanford in her famous book, “Mindset: The New Psychology of Success” are byproducts of immersive, supportive experiences that emphasize challenge, skill-building, and persistence despite setbacks.
The psychosocial theorist, Erik Erikson, had a stage theory of human development. He believed that within each stage was a central “crisis” to be resolved and how well one emerged from the stage and entered the next was a function of the degree to which the crisis had been resolved. When my son was diagnosed at age eleven he was in Erikson’s fourth psychosocial stage: industry (competence) vs. inferiority.
If the messaging to an eleven-year-old with T1D is, this is too hard for you, too dangerous, too you name it, then the child would begin to think that diabetes was a significant limiting factor. That impingement on self-efficacy would leave an imprint on the stages yet to come and be a set up for learned helplessness, worry, sadness, frustration, and a lack of confidence. Conversely, if a child of this age is exposed to a supervised, supportive, inspiring community like one finds in diabetes camp, he will emerge stronger, more confident, and more willing to embark on new and challenging pursuits that showcase his competence in handling his condition.
As a therapist, I sometimes speak with parents with heavy hearts over conditions or diagnoses of their children. Often, the children are soldiering on in their own way and sympathy may be misplaced when a show of empathy would better fortify and empower the entire family. I am reminded of a race I once ran in Central Park in New York City one summer. I looked on in pure awe at a blind runner to my right flying past me. I saw his guide next to him giving him quiet direction and I wondered what kind of messaging and experiences this runner had internalized over his life to cultivate his courageous growth mindset despite a formidable obstacle.
Modeling a growth mindset themselves, parents of children with type 1 can let their children venture forth to be guided by experts such as those staffing diabetes camps. T1D youth will learn lifelong skills while having fun and parents will get a respite from caregiving along with the great reward of watching their children thrive with T1D.
As I drop my 19-year-old son off this week for a socially distanced mini-semester at his university, I am grateful for his early experiences at diabetes camp, and subsequently in pre-college overnight programs. My son is stronger and more empowered because of these safe and confidence building opportunities which expanded his diabetes management skills and enriched his overall independence and development.