While learning to listen and speak is possible for many children who have hearing loss, there are some children who, for reasons of additional disabilities or other complicating conditions, can learn to listen with technology but may struggle to produce spoken language. What choices should parents and professionals consider when deciding how to best help these children? Below, I’ll discuss two case studies of children in this situation and some factors to consider when planning intervention.
Grayson (not his real name) was born with multiple congenital issues, including a complete cleft palate and missing almost his entire tongue and much of the bone structure of his jaw. Audiological testing showed a severe hearing loss, and hearing aids were fit before he was three months old. Aided testing showed good benefit from the hearing aids, but, due to his oral structure, producing intelligible spoken language would be difficult.
Maria (not her real name), was a micro preemie and endured many medical crises during her long stay in the neonatal intensive care unit (NICU). Miraculously, she survived, but her early birth left her with many lifelong side conditions, including autism, severe cerebral palsy profound bilateral sensorineural hearing loss. She received bilateral cochlear implants at eighteen months of age and showed good benefit, but her autism made it hard to build social communication skills, and her cerebral palsy made articulation on the few words she had garbled and difficult to understand.
What is the solution for these children and others like them? Due to technology, both had good access to sound and spoken language for receptive communication. Due to other factors, spoken language as an expressive means of communication may not be their most efficient or effective mode. Now, if you’re in the old mindset where “deaf” automatically equals “sign language,” you may feel you have this puzzle figured out already, but here are some things I’d encourage you to consider:
These children understand spoken language. They do not need sign language to understand the input coming in, they just need a way to express their thoughts out to the world.
Physical factors may make these children’s signing just as “unintelligible” as their verbal output. In fact in Maria’s case, the family was initially encouraged to use sign language with her, and when I met her a few years later, she did have a small collection of expressive words in sign, but they were totally unrecognizable. They looked nothing like the actual ASL sign because of her motor difficulties. They were MSL — Maria Sign Language — and her mother had to interpret.
Communication does not happen in a vacuum, it is an interactive process. When determining the most effective mode of expressive communication for these children, we must ask ourselves, “Which mode of communication will give this child the widest possible range of communication partners?” Using AAC (Augmentative and Alternative Communication) allows the child to be understood by anyone who can view the pictures on a picture board or understand the spoken language output from a speech generating device. AAC solutions can range from low tech picture print-outs to very high-tech speech generating devices operated by eye gaze. The children can use AAC in the language or language(s) of their homes, allowing them access to fluent language models. In contrast, sign language provides these children access to a very small range of communication partners and those to whom they do have access often are not fluent (if parents are learning sign along with their children, they will not be able to provide fluent language models right away, if ever). Due to the nature of these children’s multiple disabilities, they may also have issues like limited eye contact and poor motor control that further complicate signed communication. For many children who are deaf+ and struggle to produce intelligible speech, AAC can serve as a bridge to spoken language or replacement for spoken expressive communication, while still allowing children to develop their auditory skills and communicate with a wide range of people in their communities.
When implementing AAC with a child with multiple disabilities, parents and professionals may want to consider:
Adding a speech-language pathologist with AAC expertise to the team. This SLP can work in conjunction with the AVT to devise an AAC system that capitalizes on the child’s receptive auditory skills and expressive AAC skills together.
Working with an occupational therapist to assess the child’s motor and coordination abilities and readiness for different forms of AAC.
The family’s specific vocabulary needs and preferences — the same “basic AAC symbols” sheet is not appropriate for all families. Customizing the child’s lexicon is an important part of helping the child and family “own” the AAC experience.
Giving both family and child experience manipulating and using the AAC system. Think about all of the modeling and explaining parents need when their child receives hearing equipment, and how this parent education is not a one-time event, but ongoing. AAC deserves the same level of counseling and coaching.
Giving the child models of how to use AAC. Even if the child’s receptive mode of communication is auditory (understanding spoken language), he still needs to see how adult users manipulate AAC to express themselves. He might understand if you say, “I want a cookie,” but you need to show him how he can express it using AAC as well.
Continuous evaluation: is the AAC effective? Have the child’s needs changed? Does the child need the AAC anymore, or have her spoken language abilities progressed to the point where that is an effective means of expressive communication? Has the child “outgrown” the capacity of her current AAC device and is she ready to move on to something more complex?
Children with multiple disabilities are unique, and it is difficult to make generalizations from one case to the next, but too often I fear that we hear “deaf” and think “sign language” if a child cannot develop spoken communication when, in reality, AAC may be a more practical alternative, for all of the reasons discussed above.