Luke has a unique genetic condition and a happy disposition. He will talk to anyone who shows interest and has time to chat. When Luke was a toddler, expressing his needs was challenging, so mom Vickie employed a variety of tools to help. Sign language can be a great tool for littles, but was ineffective due to Luke’s motor delays, so his parents began to look at Augmentative and Alternative Communication (AAC).
AAC can involve pointing to pictures or symbols, as in the Picture Exchange Communication System (PECS). Students point to a series of pictures to string thoughts together, such as “Steven wants cookie.” Luke started out with this process, then graduated to an iPad and the Proloquo program, the tech version of PECS. The app grows with the communicator and can be personalized with favorite questions and specific needs.
Luke then moved on to the Language Acquisition through Motor Planning (LAMP) program, which uses neurologic and motor planning principles. Luke still uses an iPad and apps for schoolwork, but his speech has improved so much that verbal communication is the go-to at home. Some of his longtime friends use EyeGaze, a program that allows students with the greatest physical restrictions to type out words with their eyes. EyeGaze gets to know user tendencies, using predictive text to increase speed and helping access search engines and social media.
Ben Carey, 23, is moving into his first apartment. His sense of humor shows in the funny decorative touch to his new couch—a letterboard pillow from Autistically Inclined. The pillow mimics the letterboard Carey uses for Rapid Prompting Method (RPM), a communication technique used by people with disabilities who cannot speak. Users spell out answers or point to simple yes or no responses.
Seizures make independence challenging for Carey, but staff and family are committed to making it work. Monitors, alarms and 24/7 care are in place for safe sleeping. “I have a new voice and a new unit of senseis making it possible,” he spells. Carey loves all aspects of his newfound freedom, but says that making memories with loved ones is his priority.
Helping Carey transpose spelling into print are Celina Viloria, owner of Builders of Eloquence and Engagement, a consultation company, and Colmena Academy, a nonprofit school for nonspeaking communicators. Viloria was a special education attorney whose quest to support her son led to a trip to Texas to learn from Soma Mukhopadhyay, the creator of RPM. When Viloria returned, she searched for a local RPM practitioner to help. Unable to find steady support, she left a successful law practice to become a teacher.
Viloria’s and Mukhopadhyay’s sons have two things in common: 1. At one time, they were assumed to be unintelligent, and 2. They surpassed every expectation anyone ever had of them as disabled learners and communicators. Julián Camacho, Viloria’s 15-year-old, has written a book, Autistic & Awesome: A Journal from the Inside, and is on track to attend college with supports.
According to Viloria, perception is everything. IQ tests are motor-based—children with motor-planning issues can’t be tested by traditional methods. “It’s unfair for people with motor challenges,” she says. “It’s surprising how much we assume about a person from the way they move.”
Local school psychologist Jessica Coleman says that in order for standardized testing to be judged, the same standards must be upheld each time the test is given, which does not allow for deviations like larger text, having a test read aloud, or responding in a greater amount of time, all of which are common accommodations for classroom work. In her former home/hospital position, much of Coleman’s job was finding alternative ways to measure intelligence, many of which involved reframing questions in ways students could answer. Students in home/hospital situations may be intubated, have low eyesight, be unable to point or hold a pencil, or have reduced stamina due to procedures and medications. There are solutions to help assess students, even if those methods provide a range of intelligence, versus a hard number.
Language, communication and bonding are keystones for healthy children. AAC has expanded the methods in which students can express themselves with their families and their world.
How Parents Can Support Alternative Communicators
- Assess with the best. Find speech pathologists who understand AAC and psychologists familiar with alternative methods of assessment for nonspeaking students. Ask for examples of devices or programs that might fit your child’s specific language needs and motor skills.
- Do your research. Dr. Anne Donnellan is a professor at University of San Diego. Take a look at her work on Autism and language from the motor perspective. Peruse websites from organizations such as the American Speech-Language-Hearing Association (ASHA) for tips and resources.
- Take a test drive. UCP (United Cerebral Palsy) of San Diego has a lending library full of products parents can check out to “test drive” products for their children before purchasing. They also have resources on how to use insurance to pay for products and services.
- Recognize that needs change as language develops. The device that works for your toddler may not work for your teen. New AAC products are developed annually. Do your best to stay on top of research and technology and prepare to upgrade, or to take a step back from tech if it is warranted.
- Support your child’s mental health, as well as your own. “The most valuable accommodations you can give a student who uses AAC are time and patience,” says Viloria. Lessons and schoolwork can be exhausting for both of you. It’s important to admit this and take care of mental health needs. Find a counselor for yourself and consider play-based psychologists or social workers who work alongside speech-language pathologists for your child.
Emily Dolton is a resource specialist, artist, and mom of two, one with 22q11.2 Deletion Syndrome.