Family Expectations in Early Intervention

Research Assistant Kayla O'Neill talks with Dr. Katie Herron, Director of the Early Chilhood Center, about the importance of having high expectations for children with disabilities and how early intervention providers can support that.

Transcript

Welcome to the Early Childhood on the Go Podcast, where the Early Childhood Center team shares ideas and strategies for professionals and families. Dream Big, Start Early. Today, Katie Herron is here to talk about family expectations. Welcome to the podcast, Katie, do you want to tell us a little bit about your background? Absolutely, my name is Katie Herron, and I am the director of the Early Childhood Center at the Indiana Institute on Disability and Community, which is a mouthful. I started my career in psychology, so I have a Ph.D. in clinical psychology and when I was finishing up my degree, I had my first child who had a disability and that sent me down a completely different pathway. I became involved with the Early Intervention system in Indiana and served in various roles there, did a lot of work around family and parent advocacy,  and ended up here at the Institute about a decade ago and became Director in June. Awesome. So, one of the things that you want to talk about today was family expectations. What do you mean when you say, “Family expectations?”  Yeah, this is one of my favorite topics. So, “family expectations” is the term that we use in the research literature, but really, it’s kind of a catchall and it’s been defined in different ways, we can think about it as aspirations, we can think about it as hopes and dreams, it’s essentially thinking long-term about what’s important to us when we think about our child’s future. So, if most of the research has been done with families of older children why are we talking about the importance of family expectations in early childhood?  Yeah, so you’re right, most of the research has been done with older children and interestingly, it’s mostly been done in kiddos who are in high school and preparing to transition into young adulthood. And it kind of makes sense because that’s a time of great uncertainty. We know that employment rates for young adults with disabilities are quite low. Families are getting nervous, and so it makes sense that the research might have focused on that transition. But what we know about expectations is that they don’t just start in High School, right? I mean families, all families, whether it’s a child with a disability or not, have expectations for their kiddos about what they hope and dream, that their child will be able to have or achieve or experience as a young adult. And so, it’s really important to start thinking about those expectations when the journey begins. And for a lot of families the journey begins in early childhood. Well, I was gonna say, as an early intervention provider, how can we start that conversation with families? Yeah, I mean, it’s so important and yet it’s kind of left off of everybody’s radar. I feel like it’s not necessarily identified as the job of an early intervention provider, and it’s not necessarily identified as the job of someone in the special education system. And so consequently, when we talk with families, they tell us that nobody asks them these questions. Everybody kind of accepts that they’re in survival mode and they’re focusing on the current situation and nobody’s really asking them to think about what they would like down the road. So, you know, some of the really simple ways to do that could be asking open-ended questions, such as, “What are your hopes and dreams?”  It’s a simple – it’s not rocket science. It’s really just being curious and not being afraid. When I talk to providers, a lot of times there’s this fear that if we ask those questions families will start crying, families will be overwhelmed, families will be sad. And, you know, we did a study here at the Early Childhood Center on this topic and we spoke with a number of families, and they were all equipped to answer this question, ready to answer this question, and weren’t emotionally distraught around this topic. Right, and it’s interesting, you know, it’s like I’m trying to think about have I done this as an early intervention provider? And why am I not doing it more? Why are providers not comfortable with it? And I’m wondering if it’s because it was not part of the training earlier. Early Intervention has changed so much in the past 10-15 years. We were taught to work with children and we’re finding that that’s not necessarily the best way to do early intervention. So, we’re changing to this coaching model where we’re trying to support parents more. And I’m wondering how can we get that built into early intervention – how can we get providers to know that that’s so important? And I think that’s all aligned, right? So, as we work with families more, we acknowledge that families are critical. Systems are not enough to carry these kiddos across the lifespan. And so, part of what we’re doing in First Steps is that we’re looking at the life force model, which really helps us to remember that yes, we are an early childhood program, yes, it’s a birth-to-three program, but those kiddos don’t just stop existing at age three.  They go on to another system, and so helping the family to see how all the systems tie together and to think about that bigger picture makes them so much better equipped and positioned to do things like decide where they want their kid to go when they transition from early intervention to preschool.  How do you make a decision about placement if you haven’t thought about what you want school to be like for your child, or how important relationships are for your child, or what you hope for them to have eventually in terms of education or employment.  It’s really hard to make a decision about the future if you haven’t charted out where you want to end up. Right, and we talk a lot about transition and early intervention. We’re very aware that Part C’s  gonna end at three, and Part B takes over. But we got a couple of meetings set up but how often are we checking in with families and when should we start that conversation of what’s gonna be the next step after they turn three?  The goal is that transition is always on the table from the time that you enter the system through the end. The reality is that we’re incredibly busy, overstretched folks. And so that isn’t always happening, but it should be the goal to have that always be part of the conversation, because that helps us as providers also to remember that don’t take on too much for this family. This family has to do this when you’re not around, you need to make sure that they’re thinking about what comes next and how they’re going to handle it. What’s one concrete way that an early childhood professional can support families to think this way?  So, I would say a couple of things – I would say one is in addition to asking questions and listening and not being afraid of families.  I do think sometimes there’s this fear of emotion that we have, but I would say the other thing is to be familiar with the parent-to-parent networks in your area. And I recognize that we often think of service coordinators as kind of our resource folks, and that’s fair, but you can even reach out to them and get that information from them, but families need to connect with other families in order to know what all their options are and to be able to envision the future.  There’s nothing more powerful than a family talking to a family with a child that’s three, four, five, ten years older and to see that’s actually what the future looks like. I don’t have to imagine it. It’s a little different, every family’s different, but still, you get to see what is that child doing, where are they in school, what are they doing outside of school? It’s a very concrete way for families to begin to think about the future. The other thing I would say is that professionals often feel the need to make families make their dreams realistic. And I’m struggling to come up with the right words here because, you know, if you think about a typical kiddo, they say, “Oh, I want to be an astronaut,” “I wanna be a ballerina.” We never hear an adult saying, “Ok, but how many people really get to be astronauts or ballerinas, you better be careful there.” Do you really think that’s right? We just let them dream.  My daughter has like seven careers that she wants to be, and that’s fine, she’s four. We have professionals sometimes feel like they’ve got to make dreams realistic when we’re talking about children and families with disabilities.  I wonder if that’s because we get these outcomes in our mind and everything has to be able to take data, just get out of that role.  I think it comes from a really kind place because sometimes I get the feeling they don’t want this family to be crushed later, and so they want to protect them by saying, “Ooh, let’s just be careful, let’s be realistic so that the family’s not sad.”  And again, I think we have to give some credit to families that their hopes and dreams will shift with new information. We know that expectations are malleable, so they change over time depending on what is happening. And so it’s ok to have some unrealistic hopes and dreams. In fact, research suggests that for families that’s a really good coping strategy. So, being comfortable with them saying things and you might be wondering, “Oh, I don’t know,” and that’s ok.  Let’s just see how that plays out that it can actually be a realistic thing. One thing I heard you mention, I just wanna back up a second, was how important it is to connect families. Do you have any ideas or strategies for people working at early intervention to do that, or to make that happen? Absolutely, we’ve got some great resources. Indiana Family to Family (INF2F) is an organization that came together. It used to be Family Voices Indiana and about special kids. And now they’ve combined into Indiana Family to Family. What they do is provide support, parent-to-parent support, everyone that works for them is a parent, and they can offer great support to families. So, that’s one, there are a lot of local ones. In the central Indiana area FUSE is a great one. This is of course Indiana specific. But, you know, Google’s a great friend and you can generally find things.  I’ve been told that on Facebook there are parent-to-parent support groups for almost every disability. And within the African American community, there’s a Facebook group for Indianapolis Down Syndrome families who are African Americans. So even down to that level of specificity we can find community. Are there other resources that you found along the way to help support family expectations? Yeah, I would say that the LifeCourse really does offer some nice tools. Particularly the Trajectory is a lovely visual that is a really nice way to help families think about where they want to be and then as they make each choice - is that choice taking them in that direction or away from that desired outcome? So, I really like that one. They also got some nice tools around having conversations about resources. That’s more of a tool for a professional to use in terms of, I think as professionals we often think about, well, what are the formal resources if somebody expresses a problem to us – what system can I refer them to? There are a lot of informal resources that we can help them access as well. So, that LifeCourse, if you Google LifeCourse it will pop right up, is a great website for that stuff. So, if you were in my shoes, what question would you have asked yourself that I didn’t?  I think maybe the next steps around this – the research in early childhood family expectations is very new and I would just say that based on the research we’ve done at our center, one of the things that I’m thinking about is how do we support conversations with families around some of these topics that they’re not necessarily getting from any one source. So, we haven’t really trained First Steps early intervention folks to have these conversations about expectations. I hope that we will, but, you know, for right now it’s not happening consistently.  It’s not part of what we were told to do. Exactly. And so, given that and given that we know it’s not happening in the school system, are there ways to offer some videos or micro trainings where families could get pieces of this information? For example, what is inclusion, and what does that look like in a classroom so that as they’re transitioning it’s not enough to just know that in the long term, I want this for my child. They also have to know how to get there. And if we don’t give them the information they need to take those steps along the pathway then the outcome – it’s just a dream, but it doesn’t, there’s nothing to connect it to reality. Well, thank you so much for joining me, Katie. It was so great to hear all about family expectations. It was my pleasure, thank you. Thank you to everyone listening to the Early Childhood on the Go Podcast. Join us next time. Thanks for listening to the Early Childhood on the Go Podcast from the Early Childhood Center team at Indiana University. Learn more at IIDC.Indiana.edu/ecc.