American Action Fund for Blind Children and Adults
Future Reflections Fall 2015 FAMILY FUN
by Risa Shariff and Joseph Shariff
From the Editor: Risa Shariff is a wife and the mother of two teenage sons. She earned a PhD from Gallaudet University in critical studies in the education of Deaf learners. Her dissertation focused on the educational experiences of deafblind leaders. She is a certified teacher of American Sign Language (ASL) and a nationally certified interpreter who serves on the editorial board of the Journal of American Sign Language and Literature. Joe Shariff is a high school sophomore who is dually enrolled as a college student. He is a sergeant in the JROTC program. He is an avid writer of poetry, books, and fan fiction. He hopes to pursue a career as a therapist or teacher. Risa and Joe each share their perspectives in this article.
Risa: In our family Andre is referred to as "the Crowned Prince" because of his propensity to like activities one day and roundly reject them later. As a young and benevolent monarch, he has a lot of influence on the activities in which our family is able to participate within the community. Andre is a blind, nonverbal, developmentally delayed fourteen-year-old whose best friend is his older brother, Joe. He is often happy, and he is opinionated about what he will or will not do with the family.
Andre attends a great residential school program in Baltimore, and he returns home on the weekends. Our weekends are precious, and we schedule family fun with Andre's vacillating temperament in mind.
Considering activities in the community that both Andre and my nondisabled son can share has been a challenge. The challenge has caused us to think beyond the typical family amusements. We have come to know Andre's temperament and to analyze when even the best-laid plans may need to be canceled. It can be frustrating to have to leave an event earlier than planned, but the smiles that Andre gives when he enjoys an event and even the simple experience of being able to stay for an entire event are victories in and of themselves. We have found that Andre reacts best to community events that involve rides, stimulating music, and/or employees experienced in working with people with disabilities. Some of our favorite activities occur in open rather than enclosed places. For example, we often enjoy trips to outdoor festivals, concerts, and children's activities.
On Sundays, our family attends a church service where Andre is greeted along with the other people in the congregation. This is a bigger deal than it might appear at first glance, considering that some church congregations are less than welcoming to people with disabilities. Andre relishes the songs, rocking back and forth rhythmically and clapping along with other people in the congregation. During sermons the pastor speaks quickly. Andre turns his head to listen to the cadences, sometimes rocking to the rhythm of the message as well.
Even though Andre can tolerate more activities than he could before, we have cultivated certain habits to help enhance our family experience. To attend most family activities, we make use of paratransit services that provide door-to-door transportation. By decreasing our travel time, paratransit reduces the chance that Andre will experience frustration, ensuring a smooth transition to the event. We also make use of accommodations at public events and note exit routes should an environment prove to be too stimulating.
Part of the risk of venturing into new activities is that every experience is different, and Andre does not always display a predictable response. Part of the risk of never venturing out, however, is that Andre would not be exposed to community events, and his older brother would likewise be deprived. Fortunately for our entire family, the more that we engage with the community, the more Andre practices being a member of our diverse American society. Likewise, American society is improved when children like Andre are visible and can participate in what it has to offer.
Joe: There are times when it is not possible for us to venture out into the community. During those times, we enjoy home and neighborhood activities. Andre likes to play the tambourine the most when he is home. We play various genres of music and sing karaoke. The tambourine is not limited to musical expression; Andre has created a form of communication with me through it.
The most notable neighborhood activity Andre enjoys is taking short walks outside. Typically he will grab my arm for human guide technique and will want me to help him run. Our neighborhood is a bustling area with multicultural music, restaurants, and convenience stores. During walks, Andre often displays his joy by dancing. When he displays his excitement physically, he can tire quickly, so we need to be observant for signs of fatigue. Remaining clued in to his gestures and other nonverbal communication helps us keep activities manageable and avoid tantrums.
As an older brother, I like to find activities that my younger brother enjoys, especially because Andre is unable to elaborate on his interests verbally. Through events in the neighborhood, my mother and I have gone well out of our way to expose Andre to new experiences. It goes without saying that he enjoys music-related events more than any others. He will often dance in place, and even if it's in public, we care only for his joy in that moment. We let him dance and jump as his way of expressing the ecstatic mood he has. In those moments of pure joy in neighborhood and community our Crowned Prince reigns most grandly, and we are honored just to be in his presence.