Impact on Social-Emotional Development and Learning
To effectively understand the underlying causes of behavior in a child who is deafblind or has visual and multiple impairments, it is necessary to understand the impact of the child’s individual sensory impairments in forming responsive relationships, learning basic life skills, and creating extreme stress in the child’s life.
Depending on the degree of vision and hearing loss experienced by the deafblind child, he or she is “essentially isolated unless they are in close proximity, or in direct physical contact, with another person.” (Miles and Riggio, 1999). This is also true for the child with visual and multiple impairments in many cases. The requirement of proximity to another person, necessary to experiencing these responsive relationships, is one of the first challenges a child who is deafblind faces. For any parent or caregiver to be in this type of proximity twenty-four a day, seven days a week is beyond challenging; it is impossible. Despite best efforts, most individuals who are deafblind spend a great part of their day isolated from the people and events occurring around them. This is no less true for many children with visual and multiple impairments, especially if their physical or health challenges limit mobility and basic movement. Access to the world when vision and hearing are limited means, in effect, that much of the child’s waking hours are spent in isolation where they are disconnected from the activities, materials, and people that make up the world.
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Access to information
The world, for most deafblind or visually and multiply impaired children, is very narrow and may exist for some children at the boundary of their own bodies. Their understanding of how the world works, basic foundational concepts, is greatly impacted. As a result, often the “core life skills” needed to live fulfilling lives are often not fully developed.
Adults who work with these children need strategies (specific to the child) which can help the child have this access. Most adults, may not have these strategies when they encounter a child with these significant challenges. They do not know how to teach a child when learning cannot successfully take place through the visual or auditory methods typically used in school settings. They may also not know how, nor have resources to provide supports such as interveners, interpreters, individual support staff, tactile materials, etc. which would allow the child to have the level of access to the information other children have.
Limited number and variety of experiences, especially social experiences
Most of these children have extreme delays in the development of foundational concepts and communication skills because of limited access to information about the world around them. This limited access further impacts their ability to form meaningful and supportive relationships in all environments. The child who is deafblind or visually and multiply impaired may have very limited and unusual topics they want to share with others. They are like a ballet dancer at an auto mechanics convention who wants to talk about Swan Lake. No one is interested in talking about what they know and enjoy.
When other individuals encounter these children they may be reluctant to try to interact, or they may approach the interaction with the child in a way that causes the child to respond negatively. These failures to make a connection may cause both the child and those wanting to interact with the child to retreat from each other.
For the most part, children who are deafblind or have visual and multiple impairments are very limited in the number and variety of experiences they have. This is not the fault of the child or the people around them necessarily. Taking in information about what is happening when vision and hearing are limited or nonexistent is a slow process and always somewhat limited, even with extensive support.
Illness and multiple hospitalizations
For many children who are deafblind or have visual and multiple impairments, illness and hospitalizations are frequent and lifelong occurrences. Experiences related to poor health and frequent hospitalizations would be stressful for anyone, but when combined with limited ability to know or anticipate what is happening to you, it can be a very traumatic experience.
Things are done to you when you are sick to help you get well, but many of these things are very painful or confusing. Doctors and hospital staff, while very knowledgeable about treating the illness, have little or no knowledge of how to support the child with sensory loss while providing this treatment. For the child who frequently experiences these situations year after year, a toxic level of stress becomes part of everyday life.
Behavior is communication and an expression of internal distress
In looking for ways to help children who are deafblind or have visual and multiple impairments feel safe, more connected, successful, and independent, we first need to understand that all behavior is communication. When these children engage in distressed behavior they are doing so because they do not have a better way to communicate their complex feelings. What we see as observable behavior may be attempts to communicate about internal feelings; feelings of happiness, excitement and joy as well as feelings of frustration, disappointment or helplessness.
Though we may not always consider this, students may feel deep loss and need to grieve the passing of a family member, a parent who is absent from the home or the decrease of vision or hearing. Just like we feel anxious about our next encounter with an individual when we have behaved poorly, a student may also feel regret or low self-esteem about previous negative interactions with others.
I do not remember when I first realized that I was different from other people; but I knew it before my teacher came to me. I had noticed that my mother and my friends did not use signs as I did when they wanted anything done, but talked with their mouths. Sometimes I stood between two persons who were conversing and touched their lips. I could not understand, and was vexed. I moved my lips and gesticulated frantically without result. This made me so angry at times that I kicked and screamed until I was exhausted.
The Story of My Life (1902) by Helen Keller, Chapter 2