by Melissa Longshore
When my son, Noah, was almost three years old, I took the long trip to Atlanta to have an augmentative communication evaluation. I had no idea what to expect during our first augmentative communication evaluation. I walked in to discover a young woman with a great big smile and wealth of knowledge.
The first thing the evaluator asked me was my feeling concerning augmentative communication. I can remember telling the evaluator that I had been encouraged to look into “this augmented communication thing” for my son who was nonverbal, but I didn’t feel he needed it. She politely inquired why. I said, “I don’t feel he needs it because my son and I have communication…telepathic communication. We communicate without words.”
She started laughing and said the following, “Telepathic communication doesn’t count in the communication world, Melissa. Communication is a two way street. Not just you inferring your son’s wants and wishes, but also your son becoming an active participant in his own communication needs.”
I wanted to share this story to let others know how deeply connected the relationship is between children who are nonverbal and their parents. Plus, I wanted to let everyone know how important it is for children to find a way to become active participants in communicating their needs. The fact is when a child is one or two years old and says her first words, it is a “call your grandma” moment, but if your child is four, five, or six years (or older) like my son when he first learned to communicate (verbally or otherwise), it is a “take away your breath moment.” It is product of a whole lot of work and the investment of every member of their family to bridge a connection between your two worlds. It is monumental.
I can tell you from personal experience that the relationship between a child who is nonverbal and his or her parent is a relationship that supersedes words. I know it isn’t exactly telepathic, but it almost seems that way. You become an expert on interpreting that cry, that bodily movement, that facial expression. Only a parent with a child who struggles with communication needs would understand how in tune you become with your little one’s needs. It is an almost symbiotic relationship.
The fact is to meet your child’s needs effectively you have no option but to develop this kind of deep relationship. However, your child’s mere presence—everything that encompasses who your child is—projects and adds something beautiful into your world. That something is bigger than words. That is what your little one gives back to you as a parent. This is the relationship between a child who is nonverbal and his or her family.
On the other hand, only a parent of little one who is nonverbal would understand the desire and almost desperation to know what your child is thinking. To hear the words, “I love you.” The need for him to share what hurts when he is sick.
It is my belief that everyone is born with an innate need to be understood. That is why augmented communication is so important. It is heartbreaking to watch a child struggle to be understood. It can lead to frustration and negative behaviors. I had to remind myself that negative behavior involving communication needs might be your child’s only way of communicating. It may be expressing the desire to be understood.
Multiple Methods of Communication
One of my fears when I began the process of looking into augmented communication was that augmented communication would take away the need for verbal communication in the future. My hope was always someday for my Noah to communicate verbally despite our venture into the augmented communication world. On the other hand, I knew verbal communication would be challenging for Noah because he had physical reasons that prevented his ability to communicate, despite his deep desire to be understood. Noah had low tone in his mouth, and this low tone made verbal communication difficult. Plus, he may have had a touch of apraxia.
We found with my son that the more forms of communication that I provided, the more it facilitated verbal communication…not the opposite. If anything, communication aids, augmented communication, and assistive technology facilitated his desire to communicate verbally. It gave him a voice until he was able to articulate his thoughts well enough to be understood by others.
We found augmented communication actually encouraged that desire to communicate verbally because it showed him that communication held importance. It got Noah what he wanted or needed faster. It decreased immature behaviors like crying he previously used to obtain his needs.
I think another misconception involving augmented communication is that committing to this form of communication will limit your child to augmentative communication forever. Initially it sounds so permanent and inflexible. It turns out that using a communication device does not necessarily mean that you are giving up on verbal speech. It is just giving your a child an opportunity to express her needs. It is meeting your child where she is communication-wise at that particular moment.
We started the process of communicating with a device at age three, first a Springboard Lite and supplemental picture cards. From age four through six we moved to sign language. Then we moved to another device, a Dynavox communication device, from age five to seven. As technology increased, he was able to transition to a communication app, Proloquo, on an iPad for several years. Today, he is able to communicate verbally with articulation issues, with assistance from his iPad if needed. Noah is now able to crack jokes, ask questions, read stories, and express needs both verbally and with augmented communication.
Introducing Augmentative Communication
Before I ever began the process of verbally communication, I gave Noah the opportunity to make choices. First, we used concrete choices and then moved to Picture Exchange Cards (PECS). Finally, we used a device.
I think another misconception is that augmented communication has to always be technology driven. Most children start out simply and move towards a more complex form of technology that meets their child’s communication needs.
Always start with concrete choices that hold value to your child. This, of course, varies from child to child. In the beginning, my boys liked videos and books. Also, always introduce augmented communication in the environment your child feels the most comfortable, such as his room or classroom. Here is a sample of how we started, using actual books and videos: “Do you want to watch this video or read a book?” Child picks book. “OK, you want a book? Do you want The Hungry Caterpillar or Brown Bear, Brown Bear?” We moved from concrete examples (the actual books) to pictures of objects using PEC cards.
In the beginning, if he looked in the direction of the book/card, it was confirmation of his decision. Over time, we moved to pointing when his fine motor/finger control improved. We moved to pointing at cards instead of the actual objects. You can’t carry large objects with you everywhere. Cards were more mobile than objects. We used Velcro to put our cards into books. Then, we found the books cumbersome so we moved to a device.
Some topics you can use include:
- Foods/ Snacks
- Favorite toys and activities
- Where to go (be prepared to go if you make this choice)
- What to do after school
- Clothing choices
- Hair choices
- What to be for Halloween
- What to say on the phone to Grandma
- Telling a story/writing an story
- Navigating a book (turn the page, etc.)
- Plays and programs
- School work
Over time, we moved from two choices to many choices. Noah’s first device was a beginner device with few choices and a long wait time. However, Noah soon outgrew that device and wanted to share things that his particular device wasn’t able to do, like type words. He then required a more advanced device.
Always pair verbal communication with augmented communication to encourage verbal approximations and future verbal communication. Become familiar with their device (whatever it is) because if you don’t feel comfortable using the device, your child won’t, and he may not use it. That may require sitting down with a company representative or taking a class.
By observation, we noted that Noah always gravitated to his iPad. He loved playing games on it and navigated well on the web. We finally relented and provided all his communication needs on his iPad. Today, he carries his iPad to all his classes at school. For assistive technology to work, it should be included throughout the day. Noah uses his iPad to complete assignments and communicate his needs throughout his whole school day. He is able to do everything that his classmates do using the iPad.
There are many options available for augmentative communication. Here are some of the most popular:
- Cause and effect toys and switch toys — push a button and the toy plays
- Placing stretchy arm bands or rattles on feet or arms and raising an arm leg to form a choice
- Blinking for yes or no answers
- Eye gaze or eye gaze devices
- Concrete object choices — holding up two toys and having the child look/point in the direction
- Holding fingers for choices — a child’s individual fingers (or your fingers) can be touched or grabbed to indicate a choice
- Head switches used to navigate a computer or make choices
- Signing, including modified sign, baby sign, and traditional ASL sign
- PEC cards — Picture Exchange Cards that can be used to indicate wants or needs or form complete thoughts
- Making computerized boards of common PEC cards using a program like BoardMaker
Augmentative Devices (Dynavox, MyTobii, etc.)
- iPad communication apps (like Proloquo, Touch to Talk)
- Song — some children with apraxia may be able to sing but not communicate and can sing specific songs to indicate a need
Listen to Your Child
Overall, Noah guided his own communication needs. As the evaluator stated, he was determining his own communication path. When he signed, he was the one indicating the desire to sign. When he found sign to be too slow and gravitated to the iPad, he determined that he wanted to communicate in another method. I was losing the active participant role in interpreting his needs and he was finding his voice, even though that voice was not being communicated verbally at that time. Today, he does communicate verbally. He has gravitated to another method that fits where he is at this moment, verbal communication.
However, somewhere along the way, I embraced the idea that verbal communication was not the sole form of communication for Noah because even if he never spoke verbally, I had heard Noah’s voice. I knew he loved me even if he didn’t have the ability to tell me verbally, because I had provided him with a method of communicating that worked for him. I didn’t have to rely on telepathic communication anymore. We could begin the process of communicating together, and I can’t express enough how beautiful that really is.
I encourage all parents of children who are nonverbal to seek out a form a communication that meets your child’s needs. Go for an augmentative communication evaluation. Find what ways your child communicates best. Don’t give up quickly with implementing that method, because many times, augmented communication takes time and a willingness to be flexible. It is a marathon, not a sprint. If your child doesn’t succeed on the first attempt, keep trying.
The key to success with augmented communication is practice, practice, practice. For some children, it takes months of practice to get the concept. The more you practice, the more invested your child will become in his form of communication.
Also, remember that you can do this. The future is limitless with assistive technology, and someday your son may be like mine, the narrator in his second grade play, without speaking a word verbally.