Communication for Young Children with Blindness or Low Vision and Multiple Disabilities
What was your child’s first word? This question seems innocent enough, but it caused a great deal of heartache for me every time someone asked it. With respect to my daughter Mary, that first word was never spoken. Throughout our years in Early Intervention, we focused a great deal of effort and energy on encouraging Mary to use her voice. We did oral motor exercises, including having her blow into several different kinds of horns and progress through a hierarchy of drinking straws. We played vocalization games and imitated the sounds she made. None of these strategies were successful. Ultimately, we realized that speech was not going to be possible for Mary, and that was when we started to focus on communication.
Communication is a complex process that combines both cognitive and social skills. To communicate effectively, we need to understand concepts including those that describe objects, people, and the environment. We also need to be able to take turns having a conversation – to receive a message and to send a response. All babies communicate from their first days of life. Crying, babbling, making face contact, and wiggling their bodies can convey a multitude of messages. As they get older, babies might begin to reach for something they want, laugh when something pleases them, or make a sour face when something displeases them. These presymbolic forms of communication are no less valid than the spoken word. What distinguishes them is the need for a receptive communication partner who learns to interpret these nonverbal cues correctly.
Despite not being able to speak, Mary could communicate via vocalizations (including an infectious belly laugh), body language, reaching for an object or taking my hand and bringing it to an object, rolling, scooting, cruising, and eventually walking with her walker towards an object or location. She also learned a few manual signs from her Speech Language Pathologist (SLP). While these forms were certainly useful, Mary had her first real communication breakthrough when her Teacher of Students with Visual Impairments (TVI) taught her to use a “yes/no” head nod. This simple gesture was life-changing for our family. Being able to ask “yes/no” questions and getting a reliable answer provided us with a solid foundation upon which to build additional language opportunities.
We began by focusing on the objects that we used in our daily routines. We allowed Mary to explore these objects with her senses – touch, hearing, taste, and smell – and learn their functions using them appropriately. Eventually, I began to present these same objects just prior to the activities in which they were used. I put them together in a small tote bag so that we could take them with us when we left the house. These objects were eventually converted to object cards, which were created by mounting objects on sturdy cardboard. We displayed these “tactile cards” on a slant board covered in dark blue Veltex. Initially, we used this board as a daily planner – allowing Mary to preview activities that would occur throughout her day, but eventually we shifted our focus to choice-making.
Currently, Mary uses a tactile symbol communication system (the APH STACS cards) at school. Her TVI has also created an additional set of tactile cards that are based on the TSBVI tactile communication system, so that she might expand her vocabulary. These homemade cards represent more abstract concepts such as days of the week, feelings and the weather. The key to this type of communication system is consistency across both the school and home environments, which can be challenging for teachers and families.
Encourage parents to engage in daily practices that promote speech development. Also share experiences of children who are nonverbal and how shifting the perspective in terms of what communication meant for other families led to real progress. My best advice to parents of young children with blindness or low vision and additional disabilities is to explore the many ways that their children can and do communicate. Tune in to your child’s responses to different objects and activities so that you can become a receptive communication partner. Acknowledge your child’s vocalizations, body language, and gestures as valid forms of expressive communication. Finally, celebrate those precious moments when you and your child are communicating your love for one another perfectly – when words are not needed at all.