Erin Zacharias, M.S, CCC-SLP, is a pediatric Speech Language Pathologist (SLP) with 8 years experience in private practice and school-based services. She first encountered children using communication devices when she volunteered at an AAC summer camp as an undergrad. Through ongoing coursework, she has continued to expand her knowledge of effective therapies for children who use AAC devices. She has experience providing therapy using both low and high-tech devices. Her son was diagnosed with SYNGAP1 in 2020 at age 2. Since his diagnosis, she has spent her time raising awareness and advocating for the needs of her son.
AAC stands for Augmentative and Alternative Communication system. AAC provides a way for people to communicate who are otherwise unable to express themselves. AAC is appropriate for children who are nonverbal, but also children with severe speech disorders, such as apraxia or dyspraxia, which makes communication difficult due to decreased intelligibility. AAC provides a means for an individual to communicate through alternative ways, such as pictures, writing, partner assisted scanning, and speech generating devices (SGD).
Per the American Speech-Language-Hearing Association (ASHA), there are two forms of AAC devices: aided and unaided systems.
An unaided system does not need any equipment other than the individual’s own body. This can be gestures, facial expressions, body language, and sign language. A system that is great to set up when you do not have access to an aided system is using partner assisted scanning to communicate. With partner assisted scanning, the communication partner will present choices and the child could indicate by tapping a hand or making a gesture to indicate the choice. An example of this may be when you are at the pool and you want to know if your child is ready to be done or would like more time. The partner would hold out their hand and ask, “Do you want to be all done (pause for 10 seconds)? Or would you like to swim longer (pause for 10 seconds)?” The goal would be the child would tap the hand to indicate their choice.
Aided systems use a tool or device to communicate and come in either high or low-tech forms. Examples of low-tech options are pen and paper, alphabet chart, or picture board. Many children start out using pictures to begin to work on building communication intent. These can be pictures of real objects, Picture Communication Symbols (PCS), Picture Exchange Communication System (PECS) or Boardmaker. PICTO4me (www.picto4.me) is a free software program that allows you to make communication boards for your child. The goal is the child will either point to or take off a Velcro picture to communicate a choice, want, or need.
If the child is unable to independently navigate a communication board, then an eyegaze system or partner assisted scanning can be utilized to increase communication throughout the day. A Pragmatic Organisation Dynamic Display (PODD) system may be an appropriate fit as the partner would scan through to identify what the child is trying to communicate and then narrow the request/comment from there. PODD systems are available in both high and low-tech options. With an eyegaze system, you would set up pictures on a see-through board and present the options to the child. The child would look at the picture and then at the communication partner to make a choice from what is available on the board.
High-tech systems are speech-generating devices, or SGDs. High-tech systems can provide the child with more autonomy by providing access to a wide array of vocabulary that supports communication functions. The auditory feedback guides children in learning language and allows for communication to not be limited to those in proximity. SGDs are easily customized, and the images can be changed to be relevant to the learner. SGDs can be an app that you put on an iPad or a dedicated speech device that is obtained from a company, such as Prentke-Romich Company (PRC) or TobiiDynavox. Some of the apps are LAMP, Compass, Proloquo2Go, Touch Chat, and Sono Flex. Since the child is communicating on an iPad or a device that looks like an iPad, neurotypical children are more receptive to the device as a means for communicating, especially since most children have an iPad.
When it comes to identifying a device that would work best for your child, you want to work with an AAC expert who is able to fully assess the child and identify which devices may be an appropriate fit. These are speech-language pathologists (SLP) that have taken additional coursework to obtain an Assistive Technology Professional (ATP) Certificate or have many years of experience. SLPs do have access to continuing education credits that guide them on AAC but having an ATP certificate is beneficial as they have taken extra coursework specifically on AAC evaluation and treatment.
A private SLP and school-based SLP can evaluate and determine which device may be appropriate for your child. In our school district, we have an AAC specialist who comes out, completes evaluations for our students, determines the best device, and will check in on progress/provide guidance. When I did private practice, families would use family directed funds to buy iPads/applications or go through insurance to obtain a device. One difficulty you may encounter is getting an iPad approved with family directed funding. The reason why an iPad may be more difficult to get approved as a device versus a device from a company is that an SGD from a company is made to be a communicating device, while an iPad is not made to be a communication device. There is a big cost difference when you look at the difference between an SDG from a company ($1500+) to an iPad with an application (apps: $50-$300 plus cost of iPad). It can take more than one submission to get an SGD approved by insurance or family directed funds, but don’t get discouraged and stop pursuing what your child needs. You are their best advocate.
During the evaluation, the SLP will look at your child’s current means to communicate, knowledge of language concepts (nouns, verbs, functions of objects, etc.), which grid size may be appropriate for your child, and barriers to access devices. The evaluation will guide what different choices for an SGD are appropriate for your child. From there, the SLP will have you trial the different choices to see which device or application is appropriate. After the trial period, the SLP then completes a write-up with the findings from the evaluation and trial period and will submit it for approval to the insurance company or turn it in to get approved for family directed funding.
Sales to be aware of for applications for the iPad: Proloquo2Go does 50% off at the end of March/early April and around the second week of October; TouchChat does 50% off around the first week of May and the second week of October; and LAMP does 50% around the beginning of April and second week of October.
Each company has a Facebook page to keep you up to date on information regarding their product. They let you know about new updates, tools/tips for parents, and even access to other families groups as well. AssistiveWare Proloquo2Go even did a livestream for AAC and literacy recently. It was led by an SLP and had the children answering questions and making comments on the book using their AAC device.
Recent research has moved away from changing the programming often on the device and aims instead to get the user proficient at accessing the device and being able to navigate the pages independently. Furthermore, core words provide greater access to language because they can be utilized for a variety of different pragmatic functions, such as requesting, protesting, answering and asking questions, describing things, directing the actions of others, and expressing feelings.
Core words are the building blocks for communication for children. Studies have shown that 50 words make up 40-50% of our daily communication, 100 words make up 60%, and 200-400 words make up 80% of the words that we use to communicate. That means that by learning the 200-400 words and how to access them on the SGD, your child can access up to 80% of the words they need to communicate. These words consist mainly of verbs, adjectives, and pronouns. Nouns are less likely to be a core word as they are considered fringe words. The core words are more difficult to teach because they are more difficult to represent in a picture.
If you think about the word out (core word) and the word apple (fringe word), the word out is more difficult to put into a picture but has more uses than the word apple. The word out can be used to request, comment, command, and exclaim. Examples of the different ways you can use out would be: let’s go out, peace out, to describe location of objects (dog out), take it out, get out, look out, and talking about a time you went out (to dinner, to play, to walk, etc.). You can see how access to core words makes communication more effective for the child and decreases frustrations due to not being understood as they can be used for many different pragmatic functions.
Another area of research that is coming out is on AAC use and literacy. It is noted that children with AAC don’t get read to as much and when they do hear books it is done in a passive manner. The child is expected to listen to the book, but not expected to answer questions or predict what could happen next in the book. There are programs such as TELL ME About It, which is based on common books - such as Brown Bear Brown Bear - and works on story retelling, comprehension, and writing activities. All of these are key for growth with the child’s language and will benefit their language/academic growth long-term.
Knowing different ways to cue your child using an SGD is important. There is a hierarchy to cue the child from needing maximum support down to the child independently using the device. Here is a list from MAX to MIN:
Have the device always accessible to the child. Some examples of low-tech options: You can print a communication board of food options that you have in your refrigerator and hang it on the fridge, so that when your child is hungry, they can go up and point to the item they want to eat. You can also do one for your pantry or for favorite foods your child likes to eat. Many SGDs allow you to print pages so you can have access to words even when it may not be appropriate for the child to have a device. An example would be at the pool or at the beach. By printing and laminating the page, the child will continue to have access to the words on the device and communication can continue in a natural way.
SGDs need to always be with the child throughout their day. To learn to use the device the child will need to have access to it at every moment of the day. You may need to teach the child to be responsible for carrying the device with them from room to room in the house or class to class at school and not leave it sitting in one area of the house. Think about having something you want to communicate, but you must wait until you can locate the device before being able to say it. That would cause any person to become frustrated easily. Communication is best when it is easy and accessible.
Slow down and allow for an increased response time. In graduate school, one of my clinical supervisors told us we must count our teeth before responding. The goal was to increase and allow for more response time. As humans we don’t like silence and tend to fill silence with talking, but for children with developmental disabilities it takes them longer to process what is said, formulate a response, and execute it. We need to allow for an increase in response time before we step in to model or cue a response.
Model, model, model on the device. Children see verbal modeling of language every day, but they don’t typically see modeling of language on an SGD. As parents of a child with an SGD, you can model how to use it in different activities throughout the day. You can make requests, label feelings, ask questions, and make comments about the different activities throughout the day using their device. At mealtime, you can model asking questions on it such as, “What do you want?” and allow the child the opportunity to make a request. When playing at the park you can model making comments, such as “I like slide, slide fast, I don’t like stairs.”
When upset or extremely happy, you can model labeling feelings: “I am mad, I am happy.” You can even expand on the feelings and show the child how to state what is creating the frustration so they can further explain why they are having those feelings: “I am mad. I want to swim. I don’t want to go.” Take the time to walk through communication in the same way you would with a fully verbal child, as it allows your child to see all aspects of communication even if you are modeling both sides of the conversation.
Get everyone on your team familiar with the device and how to use it. Many of our children have several different services that they are accessing. SLP, OT, PT, ABA, music therapy, aqua therapy, and equine therapy to name a few. In addition, they have their school team as well. As a parent you can make sure that all providers and people who interact with your child are familiar with the device, the setup, what your child can do independently, how you cue them, and what works best to motivate your child to make attempts to communicate using their SGD. Identifying a lead person to provide instructions on how to work with your child to the rest of the team can simplify this. Even simple typed handouts to all providers gives a baseline of information to begin implementing the device in their setting.
It cannot be stressed enough that having access to their SGD everywhere at every point in the day will be the key to the child learning and using the device.
Connect with the SYNGAP1 community. Many parents and caregivers have gone before you and are willing to share their experiences and walk alongside you. Join us on our social media platforms and start a conversation. You’re not alone!