Supporting Parents, Guardians, and Caregivers of AAC Users: What more can SLPs do?
February 28, 2022
It’s 2022. Somehow. We live in a world of ever-evolving technological advancement, constantly changing educational standards, and, more recently, shifting health and safety protocols amid a pandemic. It’s easy for anyone to feel the world is spinning around them too quickly to process. It’s easier for that feeling to be multiplied when you’re a parent feeling lost when trying to communicate with your own child.
We know that early intervention with augmentative and alternative communication (AAC) leads to improved expressive and receptive language abilities and has been proven to not be a hindrance to verbal communication or speech sound development. This is also true for AAC programs that are effectively implemented by parents as opposed to SLPs (Walters, Sevcik, Romski, 2021). But what elements of a clinical support system need to be in place before caregiver guided AAC therapy can be implemented effectively?
Allowing Space for Grief
As SLPs, we live in a world dominated by unique communication modalities. PECS, TouchChat, ASL, GoTalk, Proloquo2go – these are concepts that are our norms. These acronyms are a part of our day-to-day vernacular. From the moment a child is diagnosed, their family is given more information than they can possibly be expected to process in an hour-long diagnostic appointment. This can be compounded by unclear or even conflicting information given by multiple professionals, leading to frustration, mistrust, and overall grief for the added hurdles their child is now facing in life (Ash, Christopulos, & Redmond, 2020).
Grief is an organic process
Some days are insurmountably difficult, some days the challenges are seemingly minuscule. It is vital to take time to validate the difficulties that children face with using alternative communication methods, as well as the difficulties their parents will face, and to know that this validation will be needed throughout intervention.
Understanding Family Units are Unique
This is a universal truth. We studied this concept in our counseling, psychology, and multicultural considerations classes. Some families are immediate supporters of AAC intervention. Some families doubt the effectiveness of therapy and see the device as overly cumbersome. Some families simply don’t have the resources to support their child as much as they want to and feel insecure or embarrassed about this.
Every family unit is unique. Our therapy must be tailored to the unique and individual needs of each family to be fully effective, and the family dynamic must be ascertained before we can expect to teach any new skills or introduce an entirely new communication modality. What does a typical day look like for this family? What about a week? How do they unwind as individuals? How do they connect as a family unit?
By asking these questions to fully understand how a family unit functions, we show caregivers and parents that we are here to support not only their child but their family as a whole.
Being Clear on Benefits for Caregivers and Clients
Evidence Based Practice (EBP) is an acronym that is hammered in every SLP’s vocabulary from the moment they step foot in their first clinic. A foundational component of EBP is the education of parents and caregivers. SLPs answer a similar rotation of questions with all caregivers of AAC users: What does my child’s diagnosis mean? Will I never hear them speak? How will this impact their education? How am I supposed to find every word on this device?
For every question a caregiver asks, there are undoubtedly dozens more worries, fears, and doubts that they keep to themselves. How do I teach them how to use this device when I don’t understand it myself? How am I supposed to remember to model core words when I already have to keep track of more than I can manage? What if I can’t find the words I need?
We, as therapists, have an obligation to discuss not only the language benefits that AAC can have for our clients but also to discuss how this communication system will improve the lives of their caregivers. By encouraging them to use an augmentative communication device, we are asking them to commit to a huge undertaking. We are asking them to learn a new way of communicating, a new way of connecting. We are asking them to remember to charge and keep clean yet another piece of technology (as if there weren’t enough tablets in the world already).
It’s vital that we talk about how this device is meant to make their day-to-day lives easier. If a communication device is making their lives or their child’s life harder, more confusing, and stressful, then it is likely time for the team to reevaluate the direction of therapy.
Focusing on Long Term Impact
AAC therapy has the potential to give people access to a multitude of new relationships, friendships, vocational and educational opportunities that they might not otherwise be able to access without it. When you’re in the thick of introducing a new communication system, it can be easy to lose sight of all the long-term benefits that come with effective and consistent AAC use.
Access to effective communication modalities begets improved behavior. Improved behavior begets less stress. Less stress begets more time enjoying your child as they are and connecting as a family. Improved communication leads to strengthened relationships, and one of the most important relationships of our lives is the relationship between children and their caregivers.
As my neurology professor told us at the end of every class – “SLPs are in the business of building relationships. Why do we communicate at all, if not to connect to our fellow humans?” AAC helps children connect to the world, and to their fellow humans. The long-term benefits are numerous, we as SLPs never lose sight of these. But sometimes we, as well as caregivers forget the most important and life-changing benefit AAC can offer: it helps build connections.
When we support parents, guardians, and caregivers, we support our clients. What is your favorite way to offer support to parents of alternative communicators? Comment below!
References & For Further Reading
Ash, A. C., Christopulos, T. T., & Redmond, S. M. (2020). “Tell me about your child”: A grounded theory study of mothers’ understanding of language disorder. American Journal of Speech-Language Pathology, 29(2), 819–840. https://doi.org/10.1044/2020_ajslp-19-00064
Seligman-Wine, J. (2007). Supporting families of children who use AAC. The ASHA Leader, 12(10), 17–19. https://doi.org/10.1044/leader.ftr1.12102007.17
Walters, C., Sevcik, R. A., & Romski, M. A. (2021). Spoken vocabulary outcomes of toddlers with developmental delay after parent-implemented augmented language intervention. American Journal of Speech-Language Pathology, 30(3), 1023–1037. https://doi.org/10.1044/2020_ajslp-20-00093
About the Author
Marisa Julius is a speech-language pathologist that has worked in both public and private school settings with a focus in pediatric augmentative and alternative communication therapy. She currently works for a private specialized school setting with children 5-21 with complex communication needs and a variety of disorders including Autism Spectrum Disorder, Down Syndrome, Childhood Apraxia of Speech, Language Delays, Reactive Attachment Disorder, and more. She is a Missouri native and earned two Bachelor degrees from Truman State University in Communication Disorders and German Studies. She received her M.A. in Communication Sciences and Disorders from Saint Louis University. She considers herself a lifelong learner, and is thrilled to be writing for SLP Toolkit, if only for an additional excuse to read more. In her free time, you can find her cooking, reading, hiking, or showing everyone unsolicited pictures of her dog.