A peaceful, happy and healthy childhood with completion of developmental goals can be severely disrupted by illness, especially by chronic illness.
The developmental tasks of childhood and adolescence are roughly:
- to develop a physical body that will carry one through life
- to develop an autonomous sexual identity
- to develop the capacity for critical thinking
- to develop the ability to communicate with the written word (be literate)
- to make friends and sustain friendships and 6. to find an individual way to be a productive (and producing!) member of society.
In the case of an eating disorder, many of these tasks will be thrown off course. A child or teen who suffers from an eating disorder may miss a lot of school, causing a cascade of academic problems ranging from inability to read or write well or achieve math literacy to delayed admission to the college of one’s choice and, ultimately, to interference with job and income later on. Height (and brain!) growth can be stunted and compromised; social isolation due to delayed maturity is common and treatment itself may disrupt family life.
Despite the severity of illness and its possible consequences, when we are faced with admitting a child to the hospital or partial hospital (day treatment), parents are often chiefly concerned about the impact of treatment on school. At first glance this may seem a strange priority when a child is ill, but over the years I have come to think that parents are actually looking out for their child’s welfare in a way that is hard to articulate: they are not focused on the eating disorder, they are focused on the child. Their approach to their own child is therefore holistic and that is the kind of treatment they want to find.
What does it mean to say “holistic treatment”? It means you treat the whole person, not just the disease or condition. To treat a child holistically you need to take their social, family and academic life into consideration, serious consideration. It is not enough to just weight-restore a child, it will be necessary to see them as an individual, to make them feel loved, accepted and validated. It will be necessary to help them return to full social functioning and to return to school in better shape than when they left.
At Kartini Clinic we have always had access to schooling for hospitalized children as well as our own school in our Day Treatment (Partial Hospital) Program. And over the years, as the diversity of patients and diagnoses has increased, I have come to see school during treatment as part of holistic treatment, in some ways as critical as the therapy that helps them cope with their feelings and the weight-restoration which is the cornerstone of recovery.
I think we see roughly three categories of students in treatment. The first is the highly perfectionistic child with (typically) anorexia nervosa who gets straight A’s and is terrified treatment will disrupt this. The second is the average to very good student for whom the disruption in their social/sports life is often the most devastating. The third is the child who is struggling in school and may not make it to graduation as they fall further and further behind. Adult investment in their academic life may be low.
For the first group, the real challenge is to help, in so far as help is possible, with the tormenting trait of perfectionism. They almost always have school materials with them and need little guidance in this regard. Our school teachers, art teachers and therapists may be the first important adults they have ever met who try to make them feel good about who they are apart from their GPA, and who help them to enjoy learning and relax some about “success” -- all while continuing to move forward academically.
A classic example of this would be a young Chinese American boy I remember whose parents were engineers and who attended a competitive private high school where he got “all A’s all the time”. He struggled to make and keep friends, because he invested so little in them, being focused day and night on his grades and his admission to an Ivy League school later. His parents were proud of his success, but assured him to no avail that he could also relax a little and have fun with other kids. He was terrified he would miss his admission to the “best” college if he did. Despite all of his “success” this boy was deeply unhappy and terribly insecure.
For a kid like this, it is not right to dismiss their hyper-focus as “neurotic” but rather to validate what they have achieved and help them continue to do so, even while “perfectionism and its negative effects on the whole person” needs to be a therapeutic conversation in their treatment milieu. Missing school is very hard on these kids and attendance at our alternative school while in treatment, where they can have exams proctored and are given time, and support, to do assignments, is comforting. Our school teacher works with their hometown school to help them stay up to date with their class work. Kids in this category typically have a lot of adult support at home and will likely do well academically no matter what.
The second category of children with average to excellent grades and a more rounded focus on social as well as academic requirements, also suffer when required to miss school for treatment. Parents are often convinced their chief concern is the missed schoolwork, but the kids tell me their chief concern is missing their friends. After all, when we are teens and pre-teens our friends are the focus of our lives, even when we love our parents and siblings and care about schoolwork. Attendance at Kartini School during the long weeks of treatment helps with their anxiety about keeping up, but does little to console them for the loss of their sports and social life. And in some ways this is good, as they experience the effect of an untreated eating disorder on life, the “disadvantage”, if you will, to engaging in eating disordered behaviors (calorie restricting, purging and over-exercise). Only when they themselves see where an under-treated eating disorder leads, are they willing to do the hard work of treatment. The schedule of the partial hospital (day treatment) program will allow them to see their friends in the afternoon or on weekends. As for their sports, they are now “injured athletes” and need to be treated as such. In the same way that a young high school soccer star can be sidelined by a broken leg, they can be benched by an eating disorder. Once they heal, they can return. But not before.
The third category of children give me the most worry, and have taught me the most about their challenges. As our population of children with various kinds of Oregon Health Plan insurance coverage has grown, so has the diversity of our families increased. These kids’ lives are challenged and academics are only a part of it. Yet school failure and non-graduation from high school will arguably do more to wound their future than any other single thing except drug (including alcohol) abuse.
I remember a young man in this category. His parents were born in Mexico, his father lived there still and had no contact with him. His mother had suffered domestic violence in her family of origin and had never had an education. She worked as a domestic and received state help where she could. They had no car and he arrived at Kartini Clinic every day via Med Transport after an hour’s ride. Mother was gone most of the day and left before her son got up in the morning for the breakfast he never ate. He had been born in this country and, of course, spoke native English but he often skipped school because no one got him up in the morning to go and the further behind he got, the less likely he was to attend. He had all D’s and F’s. He mostly stayed home and played video games because it was “easier”. His hometown school suggested he try some online options, which resulted in him doing nothing except having more time to engage in his eating disordered behaviors. He was nominally “working on getting his GED” but had no real adult guidance to do so. He was quite starved, de-motivated and felt a failure.
It is here, in this third group, where school is most critical to treatment. Academic rescue will save this child’s future if not his life. This problem is worth throwing everything we have at it. Our team prefers a return to brick and mortar schools in nearly every case, not only for the social/developmental advantages, but because “online” is neither structured nor supervised enough. Getting a GED works when it works for a motivated child and parent, but a high school diploma is better. Focusing on literacy, critical thinking and math skills will be game-changing for a child who views themselves as “not smart” and an “outsider”. Helping challenged families understand how they can support their child and advocate for them in their hometown school may make the difference between perpetuating poverty and chronic illness and rising out of it.
This is the meaning of holistic.