Strategy of the Month: Understanding and Supporting Families of AAC Learners

May 5, 2014 by - 1 Comment

Strategy of the Month: Understanding and Supporting Families of AAC Learners
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Let’s start with a basic premise: We can’t maximize AAC learning outcomes unless we’re working well with families. This is easier said than done, especially in some settings. As a clinician in a university clinic, for example, seeing families is the norm. We get to interact with them before and after the therapy. They get to observe or participate in the session. We can show them the data, observe how they interact with the AAC user in their family, and answer questions as they arise. And even with all of that, supporting them is challenging in that it takes time, skill, and planning. Although it is one of our favorite things to do, it’s not always easy to align our actions with our (stellar, ambitious) intentions. Multiply that by a factor of a zillion for our colleagues in schools and other settings where frequent, casual interactions are difficult to come by.

Another premise: Families are families. Not teachers, not therapists. Moms and dads, wives and husbands, brothers, sisters, grandparents, aunts and uncles. They are their own units, with their own culture, style, and ways of doing things. What makes them effective caregivers, like anticipating needs and over-interpreting signals, can sometimes get in the way of building more effective AAC skills. We SLPs are often eager to influence that dynamic and teach the families some additional skills to facilitate communication learning. What we often fail to realize is that our information and suggestions can easily overwhelm families.

We’ve been very fortunate to have met and worked with some amazing families who are staunch advocates for AAC and use it at every opportunity. We’ve also worked with families who were reluctant to let us try AAC and families who were supportive in principle but didn’t use it at home. We’ve also worked with a couple who were actively hostile, to us and to AAC. Here’s what we learned: They all love their kids deeply and want the best for them. However, what we do to help them become effective communication partners and AAC advocates varies widely depending on their strengths, needs, and interests. One size doesn’t fit all.

Jillian’s family was undergoing a bitter divorce when we met them. They were  open to learning more about AAC but, realistically, their ability to move forward in concrete ways was going to be very limited for quite awhile. Anger, depression, exhaustion, depleted finances, arguments, and sabotage were all part of the package.

Marisol’s parents were highly educated and very informed on the IEP and healthcare systems. As strong advocates, they obtained many services for their daughter and connected with other like-minded families. They were always on the go, had a set routine for weekdays and weekends, and had a tight timeframe for their visits with us.

Jonah’s family had never read a book to any of their children. The parents both worked two low-wage jobs and depended on a patchwork of friends and families to care for the children during non-school times. Transportation was inconsistent; There were months where our county’s limited public transit system was their only option to get to stores, medical appointments, and therapy sessions.

Kayla’s mom was a single parent. Artsy and creative, fun-loving and social. Their household was marked by spontaneity, no set routine, few rules, and a go-with-the-flow attitude. A trip to the mall, the park, or therapy took hours because they stopped to talk to everyone. Often, things got forgotten or lost but it didn’t seem to cause stress or aggravation.

All of these families are wonderful people, doing the best job they can as parents of a child with AAC needs. No one family is better than any other family. The point we wanted to make with these examples is this: Our approach to supporting them has to reflect who they are and how they function. Just like in SGDs, AAC apps, or therapy strategies, one size does NOT fit all.  

Giving a highly structured visual schedule system to Kayla’s mom would have been a mis-match. Asking Jillian’s family to implement daily AAC practice activities would have made a bad situation worse. Expecting Marisol’s family to embrace a child-directed, play-based therapy session would have ended our relationship before it got started. Different families, different needs

“First, seek to understand.” We’re pretty sure that Steven Covey didn’t have AAC services in mind when he wrote that, but it has certainly worked for us. The idea is to first figure out about that particular family’s dynamics before rushing in to make recommendations, teach new skills, or assign home practice activities. Here are some questions we try to ask ourselves.

  • What are their current priorities for the learner?
  • What do they expect from me/my services?
  • What experiences have they had with AAC in the past (good, bad, and ugly)?
  • How do they deal with things like putting demands on the learner?
  • Where do they fall on the continuum of structure and spontaneity?
  • What are their feelings about and skills with technology?
  • How comfortable are they in partnering with service providers?
  • Have they had negative experiences with previous providers that might impact the current relationship?
  • What does their week look like?
  • What roles might each family member play in the AAC journey?
  • What stressors are particularly difficult for this family?
  • What is the best way for them to learn new AAC-related material?
  • How might their culture impact our relationship? What are the norms/expectations for communication and literacy?

The idea is to support them in the way that they need to be supported to the best of our ability. We aren’t perfect or super-human. We get tired and cranky. We screw up. At times, we’re forgetful, stressed out, and over-worked. But we try to be the best AAC service providers we can be. And what these families have taught us is that their needs are as unique as their children’s.

Do you have a tried-and-true tip for supporting families? We’d love to hear about it!

 

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This post was written by Carole Zangari

1 Comment

  • I do a lot of consulting to school and training of staff. I try to make sure that parents get invited to trainings as much as possible, that I can meet with them there to answer questions, etc. I try to explain the concept of Aided Language Stimulation as gently as I can, without freaking them out about something they need to do all the time all of a sudden. We talk about starting with one simple activity where it will be easy to implement it and give it a try. I tell them not to move on until they feel comfortable. And I always try to tell them the long term goal is not going to be met tomorrow.

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