Teenager with Severe Disability

Emma and I met when she was a teenager. Her physical appearance gave the impression that her comprehension and understanding of day-to-day life were severely limited. Fortunately, we had her family as a resource. In their efforts to develop a communication system, they had discovered at an early age that Emma’s comprehension far exceeded her ability to communicate.

Her appearance led others to assume Emma was mentally and physically impaired, as she was physically disabled from head to toe. Her physical capabilities failed, leaving her brain intact, but her body nearly unusable.

Unable to speak or move her body with ease, Emma struggled frequently leading her to find a quiet place. My goals were to access meaningful therapy and education opportunities outside the home.

Her mother had developed a communication system that we could tap into and expand. Without cards or schedules, Emma could communicate with a simple gesture. It was an asset to have an interpreter already in place.

Our next step was to find an educator and classroom that would be willing to accommodate Emma’s specific needs.

Joining forces, as a team, we took advantage of their insight and expanded Emma’s opportunities to express her opinions and preferences. Her favorites were music, movies, having her nails done, and being included in social settings with no requirement of participation.

We tend to think of disabilities as a fixed condition, but we all have good days and bad days, times when we really feel like “going for it” and others when we really don’t feel like stretching ourselves. It was a challenge to communicate that message to a variety of professionals who have time-sensitive windows of opportunity and whose professions require goals.

Emma’s unimpaired mental capability motivated her to try and clarify communication. She was impatient with clinicians and well-wishers who assumed that her mental aptitude mirrored her physical disabilities. She was quick to demonstrate her intolerance of their lack of insight.

To clarify her communication, she growled or swatted at those who attempted to stretch her physical limitations without her permission. She could hear and understand. Though she could not speak, she was quick to inform others that her physical condition did not reflect her mental abilities.

As Emma struggled to convey her insistence on being consulted , caregivers frequently misinterpreted her impatience as bad behavior. Clarifying her preference was based not only on speculation about what she might enjoy but also on an evaluation of what her body could tolerate on any given day. What they neglected to appreciate is that Emma was the best person to assess her capabilities. However, questions were pointless, since she could not respond.

If we reflect on our communication habits, we realize that we ask many questions and don’t pause for answers. Though Emma could not answer a question, she could respond if questions were posed in a way that she could respond in a gesture that indicated yes or no. This practice enhanced Emma’s interest in communicating with others. It also gave her a voice.

Body language with gestures and facial expressions reduced the auditory clutter and allowed Emma to participate. Proceeding simply and slowly added clarity and connection for her unique and individual way of processing information. Accommodation for her disability demonstrated understanding and connection that she was heard.

In addition, we were successful in finding a flexible, creative educational program. An educator who could assess and apply individual needs in a classroom setting. Creating opportunities for Emma that involved observation of others and engaging in activities that she enjoyed. Routines included listening to her favorite music with headphones, having her nails done and joining in activities as she was able. She remained and was able to participate until she aged out of the program. These successful efforts made life easier for Emma’s family, but most importantly, they greatly improved Emma’s quality of life.