Written by Julie Higginbotham, Senior Case Coordinator, Mecklenburg County CDSA
Families feel a lot of things when we’re involved in their lives as early interventionists, and it’s important to validate those feelings throughout our time with them. Some are happy we’re there, some aren’t so stoked to have us around, and some probably don’t really know what to think of us. It’s important for us to be objective and OK with wherever we happen to fall along that spectrum. In contemplating the concept of early intervention and families’ feelings, I was doing some Googling, and I came across a forum in which special educators were talking about families’ being in denial about their children’s disabilities. Wow – some professionals really have some strong thoughts about denial on both sides of that fence! I’ll be honest – this is a touchy topic for me because I feel like there’s a level of judgment tied to that label of being in denial, particularly when it comes to families’ thoughts about their children. Let me explain….
The Merriam-Webster Dictionary provides a simple definition (thanks for that!) of “denial” from two perspectives. The general definition says it’s “a statement saying that something is not true or real.” Then, there’s a psychological definition that says it’s “a condition in which someone will not admit that something sad, painful, etc., is true or real.” Hmm, those feel like loaded statements. How do we know what parents do or do not think is true about their children’s disabilities or delays? Furthermore, how do we decide what they’re choosing to admit to us?
It is important to accept parents’ thoughts and feelings as they share them, without judgement. We have to meet them where they are and appreciate what they’re ready and willing to share, whenever they’re ready and willing to do so. If we describe a parent as being in denial, we are potentially making a lot of assumptions about where they are in the process of meeting their child’s needs, which could really put a damper on our rapport. Think about it – if I’m listening to a family and presume they’re in denial about something, my inner monologue is probably racing, planning what I’m going to say next to pull them out of said denial. That’s not productive, and I could be missing out on some important things they’re saying, both verbally and nonverbally. Taking that a step further, we have to be objective as IFSP team members working together to support a family. How is that possible if we have presented information to each other that may not be accurate because we think that a parent is in denial and isn’t admitting something to us? Sure, we can talk about challenges and observations in the context of how to best meet a family’s needs, but we have to be careful about whether there’s any judgment in that information. We need to work together to support the family where they are and balance that with sharing information that helps them make informed decisions.
Don’t get me wrong, I get how folks can make that leap, and it takes a really conscious effort to step back and look at the bigger picture sometimes. As professionals, we may see things that jump out at us as being significant, and we may then feel obligated to inform families of those things we see. But if we’re feeling a certain way because a family isn’t talking about it or agreeing with us, maybe taking at look at our own feelings are a good place to start. Take this excerpt from P.J. McWilliam in Working with Families of Young Children with Special Needs (2010, p. 136-137) – it comes from Chapter 5, “Talking to Families.”
We fool ourselves into believing that, if we could somehow get families to understand the importance of our recommendations, then surely they would see the light and agree. As a result, we might stop listening and start talking even more – trying to justify, explain, and convince. An unfortunate side effect of convincing, however, may be that parents feel judged, that the interventionist doesn’t approve of what they want or what they are or are not doing for their child. It’s easy to see how this could jeopardize the relationship.
McWilliam goes on to say that our efforts to understand families shows them that their opinions are respected. They may even open the door to more information and consider different perspectives. Wouldn’t it be much better to have the door opened for us than feel like we have to find a way around it? This is why asking reflective questions is so effective – we’re not there to lead families to our conclusions, we’re there to explore their thoughts and feelings so we know where they want to go. That doesn’t mean that we won’t share information with families or that we won’t move, we’ll just proceed with the family at their own pace. If you are sharing information, it’s always a good idea to get a little more direction by asking a few more reflective questions, like “What do you think about the information I just shared?” or “Based on the information we discussed today, how would you like to move forward?”
So, what can we say when these kinds of things come up? Well, you might say that a family is working on getting more information about a particular priority or concern, if that’s the case. You could even say that the IFSP team, including the family, is working on getting on the same page and trying to learn more about the family’s perspective. It’s OK to recognize that some conversations are more challenging than others, and if a family says they’re in denial, that’s a great place to start unpacking some of those feelings with them. We just have to make sure that we’re not the ones providing that perspective for them.
It’s important for us to be in-the-moment with families and addressing the things that they are willing and able to say out loud. What they share is all we really can say that we know for sure. Everything else is likely an assumption, and we don’t want to build relationships on uncertainty. Meeting families exactly where they are is what sets us apart as early interventionists – looking at strengths, focusing on families’ concerns and priorities, and helping families address those concerns and priorities in a way that makes sense to their individual family. We don’t need to pull them to a new place just because we think they should be there, but we can take some time to delve deeper into the things that they do share and see where we land. Building a rapport and showing families that we want to be in that place with them, though, is what helps move us along together, wherever that path may take us.