Children with Essential Tremor: Navigating Education and Life
By Dr. Keith Coffman
Essential tremor (ET) is the most common movement disorder on the planet. It is often inherited, so most children who seek medical attention for their ET usually have family members affected as well. Interestingly, since the expression of ET can be different from one person to the next, an affected child may experience a different level of impact than other family members. The parent may have a low level of impairment, but may have seen their own parent or an aunt or uncle or other loved one significantly affected by tremor. A parent’s perception of the impact of ET on their child may be significantly skewed by these personal experiences.
Treatment options have evolved over the past decades. The availability of tremor reducing assistive devices, such as specialized writing utensils and tremor-cancelling eating utensils, has significantly increased. Such adaptive technology for school tasks simply did not exist two generations ago and some parents are surprised at the number of possibilities there are for their children. In addition, special education law has greatly evolved and expanded over the last four decades, leading to greater access to educational accommodations for children who have functional disabilities but do not have intellectual or learning disabilities. Many parents of children with ET do not know about their child’s rights under the law, so it is incumbent on the medical community to help guide them through the journey.
It is critical to assess, directly from the child, how much he/she feels affected by his/her movement disorder. Assessing function at home, school, during desired activities, and in social situations ensures that all domains of function are adequately addressed. Parents are frequently surprised, and at times upset, when their child brings to light a domain of function he is experiencing a problem with, of which the parent was unaware. Parents should understand that their child is the only person who experiences his life, and it is these unique experiences that shape his perception of impairment. Feelings of frustration due to impairments are very common and normal. Parents should not feel inadequate or distressed because their child experiences these feelings. Once the child’s areas of functional impairment are identified, treatment options specifically focused on these areas can be implemented.
As the emotional impact of ET can be significant, addressing items such as stress, anxiety, purposeful withdrawal from desired activities or social interactions, and depression is vitally important. It is also imperative to get an accurate assessment of sleep, as stress, anxiety, and depression can contribute to insomnia and other sleep disruptions. If significant emotional stressors are identified, an appropriate referral for behavioral health services, such as cognitive behavioral therapy, can be highly effective. Behavioral therapy is preferred over prescription medications. Effective therapy gets to the roots of the dysfunctional thought and behavior patterns; it teaches the child appropriate responses to situations which can help reduce anxiety and/or improve mood. Treatment of the emotional side of ET can yield a significant positive impact on self-image. If the child does not have a positive response to therapy, then it may be a question of the child’s comfort level with the therapist. Trying a different therapist should be strongly considered before proceeding with medication.
From an educational standpoint, the completion of assignments which require fine motor movements of the hands are typically the most affected by ET. And although the most discussed functional impairment is that of handwriting, other areas, such as art class and lab-based science courses can be affected as well.
Students with ET frequently have handwriting that is difficult to read. In addition, they may take an exceptionally long time to complete written assignments, if they write slowly to intentionally compensate for their tremor. Both of these functional impairments can impact the child’s academic performance.
There are many ways to decrease the effect of tremor on handwriting. One option is to utilize weighted pens or pencils, or wear a weighted wrist band to dampen the impact of tremor on penmanship. These types of interventions, if purchased by the student or family, should not require any agreement with or assessment by the school. If these options are ineffective and accommodations or modifications to actual assignments are needed, then discussion about the implementation of a 504 Plan may be necessary.
Section 504 of the Rehabilitation Act of 1973 prohibits discrimination based on a documented disability that “substantially limits” one or more major life activities. Therefore, the condition must impact performance. When handwriting is impacted, many options exist for the school to provide appropriate accommodations. The use of a tablet or laptop is often the best modification for handwritten assignments. Alternatively, the use of talk to text software can be chosen. However, if these technologies are not available, students could give verbal responses to written assignments.
With regards to other fine motor-based school activities, these can also be accommodated. In art class, for example, drawing could be done on a digital device instead of by hand. For lab-based sciences like biology, chemistry, and physics, students who have tremor could be partnered with a student without fine motor impairments. Most athletic activities will not be affected by ET, but it does depend on the sport. Young athletes should be counseled towards sports where prowess depends on gross motor more than fine motor abilities. In other words, it might be best to encourage track and field over golf.
Parents of children and adolescents affected by ET often struggle to navigate the educational system and need additional guidance. Parents should feel comfortable reaching out to their pediatric movement disorder neurologist for help. Your child’s doctor can advocate for the student if the family’s efforts are unsuccessful. Pediatric neurologists and their office staff have expertise in the education system, as they frequently work with local schools on behalf of their patients.
Despite all of these options and supports, living successfully with ET can be challenging. It can be emotionally draining for all parties involved, so hearing from the voices of others with similar experiences can be exceptionally helpful. When this type of support is needed, reaching out to the local support group affiliated with the International Essential Tremor Foundation would be most beneficial.
It is important for parents to understand how ET impacts their child’s everyday activities, what accommodations and technologies are available, and how to navigate the special education system at their child’s school. Your child’s physician is a vital part of your child’s educational team. Don’t hesitate to reach out to them if you have questions about how to help your child live better with their essential tremor.
Keith Coffman, MD – Clinical Director of Neurology, Assistant Professor of Pediatrics, University of Missouri-Kansas City School of Medicine, Children’s Mercy Hospital, Kansas City, MO, and member of the IETF’s Medical Advisory Board.