by Cassandra Stafford, MS, CCC-SLP/L, ATP (Speech-Language Pathologist and Assistive Technology Professional), NWACS Board Member
This is part two of a three-part series on Teaming for Success.
*AAC stands for augmentative and alternative communication
Dear Professionals: school-based and community-based; teachers, aides, staff, SLPs, OTs, PTs, BCBAs, nurses, doctors, mental health providers, advocates, consultants, vision specialists, case managers, and all other professionals.
I ask you to take a moment to reflect.
In the past few months alone, I have had several families come to me for support after years of being pulled in every direction imaginable by a variety of professionals. These families recounted similar histories. A story that I have heard many times before. The story goes something like this:
Their child is first taught PECS (Picture Exchange Communication System). The family embraces it and has a houseful of picture symbols on little cards. Their child makes some progress with this system but stalls at a certain phase. Over time, support and use of PECS fades. Various light- and mid-tech communication systems are tried. But nothing long enough, or consistent enough, or robust enough, to stick. Eventually an AAC app on a tablet is considered, so the team tries Proloquo2Go (or TouchChat, or LAMP, or other similar app) with the child. But then a new team member comes along. Changes in team members happen frequently over the years. The new team member recommends a different app or AAC system. Or a new team member doesn’t support/allow AAC devices. Or a new team member reprograms the existing AAC system so that it is unrecognizable. Or a new team member wants to focus on oral speech only. With each new team member comes a new idea of what to do. Which results in a complete change of the child’s system of communication.
Rarely, if ever, is there one “right fit” system of communication for a person. A “perfect” AAC system does not exist. Usually, there will be more than one option that will meet the needs of the AAC learner and their family. Once we have identified those, we need to default to the AAC learner’s (and their family’s) preference. They choose and we support. Every time we make significant changes to an AAC user’s system, whether that is reorganizing the current system or changing to a completely new system, we create an obstacle and set them back.
Do you remember when you were first learning a computer keyboard/first learning to type? How long did it take? What if someone had decided it was taking you too long to learn and changed you from a QWERTY keyboard with the English alphabet to one with the Arabic alphabet? Let’s say that you then changed to a new keyboarding class and that instructor is not comfortable with the Arabic alphabet, so they swap out your keyboard for one with the Greek alphabet on it. But then they decide that the Greek keyboard is not right for you, so they change you to one with the Hebrew alphabet. Now imagine you suddenly are switched to a keyboard with the English alphabet but all the keys in alphabetical order (AZERTY). All of these changes happened without asking you your preference - and without giving you sufficient time and support to learn any of them. How much progress do you think you would have made? How do you think you would be feeling about keyboarding/typing? How fast and functional would you be with typing any meaningful communication? This is what we are doing to an AAC learner every time we change their AAC system.
I recently had a family of a high schooler tell me:
We use “App A” at home because it is the one our child seems to like and use best. So we want help with this communication app. But we also want to keep our child somewhat familiar with “App B” (which has been used with our child in the past) in case a future team member comes along and tells us we have to switch back to it. Right now, school just wants to use a simple yes/no board.
I recently had a family of a high schooler tell me:
We are not using any AAC currently. The system that has worked best for our child out of all the systems we have tried was “System C”, but we stopped using it because other things have been recommended since. We now have “System H”, but we don’t even know where to begin because community-based members of the team have edited and changed it beyond recognition.
Professionals: Stop. Please stop. Recognize the full impact of your actions. It is not fair to the AAC learner for the plan and/or AAC system to change because of changes in their team. There will be many, many changes to the AAC learner’s team over the years. It is vital that there be a consistent plan and AAC system through it all.
Dr. Caroline Musselwhite has a phrase that she says almost every time I hear her speak. It goes something like this: “Dance with the one you’re with.”
If someone already has an AAC system in place - your job is to be curious about it. It is your job to seek and gather information. To learn about the system. To learn why it was chosen. To learn how the person is using it. To learn the person’s thoughts about it. To learn the family’s/caregiver’s thoughts about it. To learn about how you can help support it. It is your job to observe the person using it. It is your job to support the person in learning how to use their system to meet their needs and goals. It is your job to help the person meet their communication goals with the system of their choice.
To become a proficient communicator, an AAC learner requires a robust language system and reliable access to it. For communication success, they also require consistent implementation of a consistent AAC system. Give the AAC learner the best possible chance of success.
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