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Sometimes, people say things that fall on uninterested ears. But in the case of individuals with Cerebral Palsy, there are functional roadblocks that prevent effective communication. In these cases, it’s essential for families to find ways to keep information, thoughts and feelings flowing both ways.
Augmentative and alternative communication
Imagine this for a moment: A parent cares for a child every day with only a general impression about what that the child knows, what he or she enjoys, and how he or she feels about members of his or her family. Imagine the parent not knowing if the child is emotionally torn, has appendicitis or is teased at school. It sounds like a parent is out of touch with their child, but for parents of children with Cerebral Palsy that are nonverbal, this unfortunate situation is common.
When children are nonverbal, it presents quite a challenge for both the parent, the caretaker, and the individual with the disability. That child cannot give voice to practical matters he or she may be coping with. It’s impossible to say, “I’m in pain,” or “I’m sick.” They also cannot verbalize sentiments and wishes, like “I love you,” or “I’d like to go outside.” They can’t initiate a conversation, or end one. They can’t easily share a fear, a dream or an experience. People talk for them, around them, at them, but not really with them. Some assume a child can’t understand while others presume they are cognitively impaired. At school, they are shown picture stories when others their age are learning chemistry. When in public, most look away.
Now, imagine being the child.
The ability to communicate, even in a way that is not conventional, is a big plus for young people with Cerebral Palsy. No one is disputing that. Parents know that speaking is an important asset in terms of everyday interactions; they are likely to see speech and language development as necessary to the extent that they do not allow their child to communicate through alternative measures.
But speech is not always the best mode for communication for all children. Some young people with Cerebral Palsy are more adept with their bodies than they are with their voice; other children find learning to speak so difficult that they want to give up on communication altogether. It’s in this circumstance that augmentative and alternative communication can save the day.
Augmentative and alternative communication, or AAC, is a blanket term used to describe methods of communication that do not involve direct speech. AAC is comprised of low-tech, time-honored forms of communication like sign language, gesturing, and manual language boards, as well as high-tech assistive devices such as touch screens, speech-generating systems, electronic keyboards and even iPhones and iPads.
Today, parents have more options designed to help children become more communicative than ever before. However, finding the right combination of technologies and manual methods that are a good fit with a child’s abilities can be a challenge. Trial and error may be engaged in until the right fit prevails. And, just like a child’s abilities, options for improved communication continue to evolve.
Yesterday, today and tomorrow
The concept of AAC has been around for hundreds of years as people developed ways to communicate with people who, for a variety of reasons, could not speak. The first consistent and organized sign language was established in the 1700s; braille text was created in 1825 by Louis Braille.
The goal of AAC is to find ways within an individual’s skill set to maximize and supplement a child’s ability to communicate with family members and friends so he or she can forge appropriate bonds with others and function in society. Written words are not considered to be augmentative or alternative forms of communication.
In the latter part of the 20th century, there was a renewed interest, and commitment, among researchers to find new AAC solutions for people with developmental and physical challenges. This push was aided by technology; the first speech synthesis machines, computers and electronic devices came to the market. Today, there are many options available to children for use at home and in school.
AAC systems fall into two categories: aided and unaided.
All of the devices that are on the market today – from speech generating devices to communication boards with letters, words and pictures to eye-tracking devices – fall into the aided category. Aided communication makes use of all devices that can aid, or “augment,” a person in participating in dialog.
On the other hand, unaided communication does not involve equipment or assistive technology. It relies exclusively on a child’s natural acumen. Those who communicate using unaided methods use sign language, gesturing, and physical cues to communicate with the outside world.
Whether a child benefits the most from aided or unaided communication, or a combination of both, is dependent on his or her skill set. Determining what best suits a child occurs after an assessment in a therapeutic or educational setting. AAC evaluations are typically conducted by a speech pathologist, occupational therapist, rehabilitation specialist, physical therapist or a physician. This assessment will measure a child’s sight, hearing, motor ability and cognitive skills. And, as a child’s abilities evolve, their needs are likely to change.
A different kind of voice
Twenty percent of children attending special education classes in public schools attend speech therapy, according to the U.S. Department of Education. Though there is little data about how many people with Cerebral Palsy have hearing or speech impairments, it’s estimated that there are 28 million Americans with deafness or severe hearing issues, according to the National Institute on Deafness and Other Communicative Disorders.
That means sign language, which has been adapted to several languages, is the alternative communication method of choice. Sign language can also be effectively used by people who are not deaf if their ability to verbalize is compromised.
A versatile form of communication, sign language makes use of a myriad of gestures to express thought; those statements that don’t have a specific gesture can be spelled out. Because parents and caregivers can also learn to sign, this can be an excellent option for parents seeking to deepen their communications with their child.
But signing can be difficult if a child has gross motor or fine motor skill difficulty because of the level of dexterity and coordination required. In these cases, augmentative or alternative technology may be a viable option.
The number of devices in the marketplace has exploded during the past three decades; electronic boards allow children to use their hands or a pointer to choose letters, words or phrases to express thoughts. Eye tracking devices allow people who have difficulty moving their arms to target image and phrases, then plays the words so a child can “speak.” iPad and iPhones text to speech in a pocket size mobile device.
One of the most common electronic devices is a communication board, most of which contain a speech-generating device. These boards are similar to tablets. The boards contain several encoded letters, images, photos, and symbols that a child can point to using their fingers, pointers, or eye-tracking technology. These, in turn, generate words in sentences that are strung together to relay complex thoughts that can be understood by others. If a child is hearing-challenged, the communication partner can also use the system to generate messages.
Images and phrases are organized into categories, such as food, recreation, or people, so children can easily search to topics they would like to talk about. Users can customize the screen of the board in any way they choose to enhance their usage of the device and specify individual preferences, like the language they use.
How quickly the words are generated by the device often depends on the abilities of the user, but in general, the devices generate eight to 12 words per minute.
The level of training required to operate assistive devices is dependent on a child’s literacy – he or she may need to learn how symbols and images apply to real-life statements and commands. Boards come in high-tech and low-tech versions - the former is often a computerized device that offers speech generation and eye-tracking as well as memory storage of commonly-used phrases, and the latter may be as simple as a sheet of paper from a book that allows a user to point to letters and words. In both cases, people can use a head or mouth stick to point.
In those that utilize an actual recorded voice, speech generation may be digitized or synthesized.
One of the most exciting developments in AAC is the introduction of eye tracking technology. Often, children with Cerebral Palsy have motor skills challenges that make pointing to letters or symbols difficult, even with the aid of a head stick or mouth stick.
Eye tracking systems allow a use to make eye contact with a symbol or letter for a short period of time, which functions much like a mouse on a conventional computer. Once the eye has “clicked” on its target, the command is received by the device. Eye tracking technology is favored by therapists because it is a simple function for a person with disabilities to engage in.
There are other systems on the market that offer communication capabilities through a set of computer applications and software used on a laptop or PC.
Apple has been at the forefront of accessible technologies; able to incorporate software into its computers, tablets, and phones that can be easily used by people with disabilities. The iPhone, iPad and Apple computers use screen magnification to make sure options can be easily seen by people with low vision. The company also offers a product called VoiceOver, which is a speech generation technology designed for the visually impaired. However, these applications are easily used by people with hearing challenges and those who cannot, or choose not to, speak. The rate of speaking can also be adjusted so that people can set the device to suit their listening capabilities.
The VoiceOver technology allows a user to lightly tap a button on the display to use speech features. Plug-in Braille displays also allow sight-impaired individuals to share what they want to say with other users – including those that communicate using Braille. The device then converts the text to words, or spoken words.
The Apple devices can be modified to use mechanical switches for those who need them. These can be activated by several body movements. Eye blink switches are also available, as are scanning options for those than cannot use a mechanical switch.
What are the benefits?
Communication is one of the most valuable assets we have as humans, and too often, we think that if traditional speech is compromised, so is the ability to interact. But AAC offers benefits to a child and his or her parents that can’t be realized through speech alone.
AAC users are able to communicate with their parents and others at a high level. Through training and support, children in particular can become highly adept at using electronic devices, which further enhances their ability to converse with others and express ideas, opinions and thoughts.
Also, AAC can enhance a child’s educational experience because it levels the playing field with other children and teachers. If a child doesn’t understand a concept, he or she can ask a question that is then answered. It increases a child’s vocabulary and understanding of concepts like phonics, and sets the stage for a child to develop a level of literacy that will help them as they grow, seek employment, or live independently.
Another benefit of AAC is that devices and boards can be mounted to wheelchairs or tables to meet a child’s physical needs. A device can be mounted high or low to accommodate how a child sits in a chair, or to maximize use at the most adept points of the body.
Children with intellectual abilities will face more challenges as they master the art of communication, but AAC provides a valuable assist for these children, as well. Because AAC emphasizes partner communication, children and communication partners can communicate using a language all their own. Integrated programs have made it possible for young people to learn to recognize images and other symbols if they cannot understand words. This provides a viable gateway for meaningful communication.
The bottom line is that AAC, in the absence of the ability to speak, can empower a child to contribute. Later, AAC can allow a child to control his or her environment and express their needs and thoughts to others. They can develop friendships and bonds with others. The ultimate outcome is a better quality of life.
From a practical standpoint, AAC can mean the difference between living independently and living dependently because it makes possible the opportunity to express themselves in times of happiness and times of stress or emergency.
The most compelling case to use AAC is the fact that a parent will not have to read a child’s mind to know how they feel, or what they want. Instead, they’ll know for sure.
Don’t lament actual speech
For a parent, it can be disheartening to know that they may never hear their child form a word.
But a more devastating fate would be never being able to know a child – his or her emotions, sense of humor, thoughts about life, or intelligence. A child may not be able to speak, but they can be easily understood.
Some parents believe that taking advantage of technology will create a situation where a child may never try to speak. Studies have found that AAC enhances a child’s ability to speak; a 2006 research review of 23 intervention studies found gains in speech production in 89 percent of the cases examined.
Speech – and whether a child can or cannot speak – should not be the sole focus when it comes to interacting with a child. That’s the role of communication, and today, we live in a time when there are perhaps more options available for children and parents than ever before. AAC, for the most part, makes possible a parent’s ability to get to know his or her child.
AAC should not be viewed as a substitute for speech: it is a complement. In the same manner speech allows a person to communicate, communication devices enhance a person’s ability to be heard.
It’s hard to find an aspect of life that is not touched in some way by technology. For people with disabilities, technological advances offer opportunities for inclusion in every aspect of life – home, school, work, and play. Assistive technology breaks down the barriers that include activity limitations and participation restriction. These advances form the nerve center of the disability movement – equal opportunity.
About Assistive Technology
Cerebral Palsy affects muscle tone, gross and fine motor functions, balance, coordination, and posture. These conditions are mainly orthopedic in nature and are considered primary conditions of Cerebral Palsy. There are associative conditions, like seizures and intellectual impairment that are common in individuals with Cerebral Palsy. And, there are co-mitigating factors that co-exist with Cerebral Palsy, but are unrelated to it. Understanding conditions commonly associated with Cerebral Palsy will enhance your ability to manage your child’s unique health concerns.
Common associative conditions
Click on a condition listed below to learn more.