Mitochondrial Disease in the Classroom

For children with mitochondrial disease, the requirements of the average school day present some of the most difficult challenges. Occupational Therapy practitioner, Susan Orloff describes fatigue and treatment within the classroom.

These children often seem to work in “spurts” and then
“peter out,” becoming lethargic and finding it difficult
to concentrate. It is essential to understand that these
periods of fatigue are not due to the child “zoning
out,” but rather total exhaustion from deep within the
cellular level of their existence.

These conditions can directly impact the sensory system’s ability to accurately interpret various sensory experiences. This may cause behavioral issues in the form of over- or under-reacting to situations; not being able to quickly respond during a school fire drill; not being able to follow a direction during physical education class; or forgetting something that was just explained. All
of these issues can complicate and impede both academic learning and emotional growth.

Fatigue can cause anyone to become less precise in his or her general functional abilities. This is even truer for the child with mitochondrial disease. Their bodies cannot function as they should, and so they are often referred to occupational therapy.

An effective treatment plan should teach:

Energy conservation;
Body positioning and postural control;
Stress management and relaxation techniques;
Fine motor training is essential—often these children have difficulty holding a pencil and cannot keep up with their
peers even at the preschool level;
Visual perceptual training;
Stimulation of sensory processing and sensory interpretation;
Task organization, inclusive of, but not limited to, time on/off task; and
Social skills interventions to help their self-esteem and better understand their actions and reactions.

Adults interacting with these children need to know that:

They are not “zoning out;”
The fatigue is real;
They need to be sensitive to the child’s energy and stress levels;
Classroom assignments may need to be modified to accommodate
the child’s endurance;
There may be times when memory and immediate informational processing (following directions) is
significantly compromised;
These deficits often make these children emotionally vulnerable and at risk for low self-esteem;
Their skills may seem transient—being able to do something at one time and then not the next.
Helping children learn to regulate their bodies, understand and anticipate their personal body cycles and rhythms is an essential element in helping all children interpret the
world around them.

There is a lot we can learn from these children with mitochondrial disease. But perhaps the most basic lesson is that without the power to do, we have no power to grow; and we can only grow from what we learn to do.

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