In Control by ProQuest


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									                   In Control
Helping a child self-manage a chronic disease
                                                       By Pam Laricchia

                          The flexibility, collaboration, trust, and respect
                          inherent in the unschooling philosophy has
                          allowed this family to live a full life with a child
                          who has a chronic disease. Their experience of
                          diagnosis and management provides some good
                          advice for any family with a child who is learning
                          to self-manage a chronic illness, allergy or other
                          long-term health issue. It also demonstrates how
                          unschooling is not merely an educational
                          method but a philosophy of life and parenting.

L  iving with a chronic disease requires a different focus than
   the immediacy of an acute illness. Rather than dealing with
the diagnosis as the start of a closed loop of symptoms and treat-
                                                                     need when we went home, as well as an initial schedule of clinic
                                                                     appointments to check on progress, discuss the disease in more
                                                                     depth, and answer our questions as they arose.
ment and cure, the diagnosis of a chronic illness is an                   After a few weeks, things settled down as we began to un-
open-ended event that influences the person’s day-to-day life        derstand the disease and felt a growing competence with the
from that point on. The first few weeks are a flurry of recovery,    daily management. At this point, a shift in focus became essen-
(especially if the diagnosis was spurred by ill-health), and         tial: away from the disease and toward my son. Focusing on the
in-depth learning about the disease and the current recom-           medical issues over the long-term can leave the child feeling
mended management protocols.                                         powerless and at the mercy of the disease as it looms large in
    In our case, my youngest child Michael got quite ill the day     how he approaches each day. Instead, it is important to bring the
after we returned home from the Live & Learn Unschooling             rest of the child’s life back into focus; management of the dis-
Conference in September 2008. At the hospital that night, we         ease is just a small, albeit essential, part of his bigger day-to-day
discovered he had developed type 1 diabetes. He was in the hos-      life. The key is to follow the child’s lead – the medical issues
pital for four days as they brought him out of diabetic              will flow in and out of focus as they intertwine with all the other
ketoacidosis (DKA); or, rather, we were at the hospital, as I        fun and interesting aspects of the child’s life.
stayed with him throughout. During our stay, the educators at             At some point, the child will want to start taking some con-
the hospital’s Diabetes Education Centre started giving us the       trol over his day-to-day medical care (eleven at diagnosis,
information and accompanying medical paraphernalia we’d              Michael was fully involved from the start). This can be a huge

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Michael’s parents’ trust that, even as a child, he could learn to capably self-manage his diabetes
has left him in control of his life and his health, as well as his education.       Photo by Lissy Laricchia

issue of trust for parents of children living with a chronic dis-     ticipating the possible effects they can have on his blood sugar,
ease, so sure that they need to stay in control of their child’s      and considering his options for dealing with them both
medical decisions, citing their child’s best interest. But ap-        proactively an
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