Unlocking Communication

Too often, there is an assumption that the lack of speech means a lack of communication. There’s nothing that could be further from the truth. Today, there are so many manual and technological aids that can bring young people with Cerebral Palsy a gift many people take for granted: The ability to express their point of view.

Unlocking the doors to communication

Imagine a world where your thoughts are known only to you, and maybe a handful of people who have learned over time how to read your body language and facial expressions. Imagine that those that come in contact with you, outside of your family, mistakenly believe your inability to communicate is a sign that you are not intelligent.

In this simulation, when you’re happy, you can’t really express that emotion. If you’re angry, you’re unable to give others a piece of your mind. If you are being teased, you can’t tell anyone. If you hurt, you can’t describe your symptoms. If you see a situation that may be dangerous, you can’t warn the person. If you have questions, you can’t ask them. If you want to make friends, it’s challenging. And, when you are of the age to seek gainful employment, your choices are limited.

Children with Cerebral Palsy often have a disability that renders them unable to communicate. To complicate issues more, if the child has a severe form of Cerebral Palsy, he or she may not be able to write, type, point, or sign. In this situation, where can a parent turn?

That depends on the nature of a child’s abilities. Today, technology has opened up doors for individuals with disabilities; people that are nonverbal can relay their thoughts and opinions, inform their caretakers about their comfort level, respond to teachers in the classroom, make friends, and discuss their health status with their doctors. Simply put, technology allows individuals that are nonverbal to participate in life.

More so than ever, old-school computers, eye-blinks, magnet boards, index cards, and distinctive sounds are being replaced with more sophisticated methods of communication. Methods that are limited to responding, but enhance interaction.

High-tech augmentative and alternative communication, or AAC, devices that generate speech, or use the eyes to track letters and symbols, give a voice to the individual that is nonverbal. Head sticks, pointers, head switches, and joy sticks are tools that can pave the way towards actively communicating with others when the muscles used to communicate are impaired.

Although finding the best mode of communication can be a challenge for therapists, parents and nonverbal children alike, it’s a road that, once travelled, can lead to a vastly improved quality of life. Families can develop a deeper relationship with a child. Friendships can form. Personalities shine. Mainstreaming education is a consideration. Emergencies can be handled more efficiently. Socialization is no longer elusive. Emotional health is improved.

There are so many benefits that are realized when a person can communicate with ease and efficiency within society.

Harnessing technology

Augmentative and alternative communication has been around for centuries as people who were nonverbal sought ways to express themselves and function in the world. In modern times, however, technologically-based communication tools began to evolve in the 1950s and 1960s.

As the advent of the personal computer evolved throughout the 1970s and 1980s, unprecedented developments in AAC technology began taking place. In some cases, if a child had the ability to use their arms and fingers, a computer could be made available for a child to type words and phrases on. Depending on the level of a child’s cognitive and developmental abilities, complex statements and conversations could take place without a single spoken word.

But some disabilities affect every aspect of a child’s ability. The inability to communicate hampers a person’s ability to progress in many aspects of their life – relationships, productivity, income generation, purchasing, learning, and more.

Today, speech generation devices can produce synthesized speech by using a touch screen, or typed words. If a child is unable to type their message because of fine motor impairments or paralysis, a head stick affixed to the head to select keys, or a head tap motion against the head supports of a wheelchair, a joystick, or even foot control may be deployed to make selections. The goal is to use the child’s ability to compensate for their impairment.

A child that cannot speak – and cannot ambulate – also has another option. Eye-tracking technology on the market today uses corneal activity to allow a child to “point” to symbols and words on a computer screen with his or her eyes to spell out, or string together, thoughts and phrases.

Assistive technologies that are computer-based, desktop-driven, tablet or mobile can also allow children to use the conventional aspects of the Internet. He or she can use the same mode of communication –fingers, toes, mouth, eyes, head taps, joystick, or a pointer – to send emails, peruse the Web, type letters, interact with others on Skype, join forums, order products, or use social media sites like Facebook and Twitter, to reach out to the rest of the world.

For some children, old-school methods of communication such as using paper message boards with magnets, or complex boards with letters and words on them, may still be the best, and most practical solution. Low-tech doesn’t mean low-quality – the most efficient method of communication is very likely going to be the one that allows a child to express thoughts succinctly.

As a child begins to experience the world that unfolds to those that can communicate, their willingness to learn new technology is as advanced as they begin to reap the benefits of doing so.

A pathway to independence

The reasons that a parent wants a child to be able to communicate are obvious. Every parent has the desire to get to know their child, and develop a relationship that involves giving and taking. They want their child to be safe, to learn, to excel and to grow emotionally, mentally and physically.

Communication is often the key to many aspects of quality of life.

Often, parents feel that the only way they can achieve this goal with their child is to encourage the child to develop speaking skills. That’s very human – every parent wants to hear a child’s voice. But communication is less about a verbal voice than it is about an authentic voice, which can be expressed any number of ways.

Occasionally, a parent will be reluctant to facilitate communication through technology for fear that the technology will keep their child from progressing in speech and language skill development. But, this is ill-advised. A child that can develop a way to communicate will likely be able to converse more readily about ways in which to progress with speech. Speech, after all, is likely an ultimate goal of the child – to be able to communicate without barriers with other children.

People with disabilities have written books, taught classes, pursued professions, and developed strong bonds with others, all without speaking a word. It doesn’t mean that a parent and child should abandon a child’s quest to speak, it just means that there needs to be a way a child can express his or her thoughts that they can rely on if meeting that goal takes longer than expected. Technology enhances the ability to communicate so that other areas of a child’s development aren’t unduly hindered, as well.

The importance of being able to communicate cannot be overstated – it’s how a child learns to interact with others, make friends, learns, and takes a pro-active role in life. People that communicate also interact and participate in life. It’s also how he or she can express the frustrations and emotions that are the result of the disability itself. Every child needs an outlet to express those feelings; concealing emotions can cause stress levels not only for a child, but also for a parent.

There’s also a safety issue at play. If a child is experiencing a medical emergency – like appendicitis or even just aches and pains – they need an avenue to get immediate relief. If a caretaker is overcome with an unexpected stroke, the child has to have a way to obtain assistance. If a child is being evaluated for being mainstreamed in public education, they have a better opportunity to prove they can participate and understand.

If a child outlives their parents, they have a better chance at living independently if they can communicate and be self-sufficient. For these reasons, considering a broad range of communication options can enhance an individual’s ability to be safe, secure and navigate their life’s journey well into adulthood. Childhood is a good time to experiment with communication options, they are likely to be open to learning new things, especially if it allows them to play with and alongside their peers.

How do I find what works?

Finding the most effective way for a child to communicate can be a challenge. It can be a long process of discovering what does and doesn’t work, and what is practical. In some cases, more than one method of communication may be deployed, setting up some options for a child that take into account what they’re doing, what they are capable of achieving, their interest level, and their preferences.

During this process, professionals will need to take into account several factors, including a child’s physical abilities, how a child will access equipment, how a child will remain motivated, how a child can be trained to use and maintain the equipment, and how a family can support their progress.

Identifying the right set of communication devices or methods may take some trial and error. Generally, finding a way for a child to communicate is a multi-disciplinary task; it involves a child’s speech and language pathologist, occupational therapist, physical therapist and the communication product’s provider specialists. If the child is pursuing conventional speech, the speech therapist will implement exercise to help a child learn to use their vocal skills to the best of his or her ability.

Occupational and physical therapists will help children develop fine and gross motor skills that are required to operate technology devices that are intended to aid a child’s communication capabilities.

The ability to communicate changes and evolves during a child’s lifetime. So does technology. For a parent, finding a way to communicate with a child can be frustrating; it may feel as though a parent and child are being denied something that is supposed to come naturally. Remaining optimistic can be a challenge, especially if the process of finding a device or method of communication takes a long time. But, be assured that solutions do exist. The advancements in technology continue to be hopeful.

Communication is the key to so much of what life has to offer. For parents and a child, the opportunity to deepen their bonds is worth the challenges of the journey.