Beyond Good Intentions: Thoughts on PrAACtical Supports for Families
Sometimes it’s hard to know how best to help families of AAC learners. There can be a dynamic tension between the things we would like them to do to maximize the AAC learning process and what they can realistically accomplish given the competing demands of their busy lives. We really believe that having families do more AAC at home will enhance the communication learning, though I’m not really sure that we have evidence to back up that belief. Nevertheless, we push for it. Nicely, of course. But we push.
On a good day, it all works out. Or, at least it seems to. But does it really? Here are some things we’ve been thinking about.
- Each family has their own culture. Some families are highly structured, others are more spontaneous, and a few are downright chaotic. Whatever their nature, it is who they are and how they operate. We have to adjust what we ask them to do at home in the name of AAC learning, as well as our unspoken expectations.
- We may prefer them to be more flexible in some cases or follow a more predictable routine in others, but that may not fit with their culture. They have their own style and way of doing things that has (presumably) evolved to meet their own needs. To pressure families to be something other than what they are will make them feel guilty and that’s not what we’re about. Plus, it sets us back in what we both want to accomplish: better communication learning.
- It’s tempting to plow ahead with our recommendations, but when they collide with the natural culture of the family, we’re not likely to make a positive impact. Putting forth ideas, like specific practice activities or routines for using the AAC system, that are incompatible with how the family operates as a unit is just not going to work in the long run. We may get compliance early on, but that’s likely to peter out. And the damage to the relationship will likely outlive any short-term gains.
- We don’t see the downside to what we are asking families to do. We don’t see the extra stress of a parent who skips his/her walk to do interactive storybook reading before bedtime (not to mention the long-term health consequences that has). We are sometimes blinded to the paralyzing guilt that comes with not doing what the professionals expect because there aren’t enough hours in the day. We are not fully cognizant of the anxiety of what it’s like to take your kid to therapy knowing that you didn’t have the energy to practice. We’re blissfully unaware of these unintended consequences.
- Slow and sustainable changes may be the best route. It is SO hard for us to take a gradual approach to getting the AAC used 24/7. We want everything implemented consistently across environments. And we want it now. No, actually we wanted it yesterday. We know intellectually that these families struggle with the daily basics and everyday routines, but somehow we can’t give up on our quest to add one more ‘little’ thing to their day. We justify our expectations because we only want what’s best for the child, right? Think of what that implies. That the family doesn’t? Oops! Didn’t really think of it that way. We need to find a way to seriously manage our expectations. And that ain’t easy.
It’s not easy on any of us. There are no simple answers.With the way that special education and healthcare services are provided in our country, parents and professionals alike are overworked, overtired, and overwhelmed. How can we best work with families so that the kids do well and the cost to the family is not excessive? Like you, we’re wondering…
Filed under: PrAACtical Thinking
This post was written by Carole Zangari