Service Coordination in Early Intervention

Early Childhood Center Research Assistant, Kayla O'Neill, interviews Service Coordinator and Educational Resources Specialist, Charissa Darland on tips for working with families.

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Welcome to the Early Childhood On-the-Go Podcasts.  Where the Early Childhood Center team shares ideas and strategies for professionals and families. Dream big, start early. Welcome to this episode of Early Childhood On-the-Go Podcast. I’m Kayla O’Neill and today we’re recording live from the Early Childhood Center at the Indiana Institute on Disability and Community in Bloomington, Indiana. I’m so happy to have Charissa here. We’re going to be talking all about how to support parents’ mental health as a service coordinator. Welcome, Charissa, and we’re so happy to have you’re here. Great, thanks for having me. Can you just tell us a little bit about yourself? Yea, so I’ve worked in the Early Intervention field for about 12 years – 10 years of that as a service coordinator and a supervisor four First Steps. I also have two children receiving services. I have a 2-year-old Kaiyah, and a one-year-old Eli. Kaiyah’s receiving PT, OT, and feeding services. Eli’s receiving PT and DT because honestly, he just could not care less about communicating. Not his thing? And I love that I’ve had both the personal experience and also the professional experience because you can relate to families in a completely different way. As a service coordinator it’s really easy to have so many kids on your caseload, and if we’re not intentionally fighting it – they can just become names and dates on a to-do list. So, being able, when you get that new referral, to take a step back and say, “This is somebody’s Eli,” and get into your head that there are parents who just make these referrals because their kids’ doctor told them to. Which may be the case, but that doesn’t mean that those parents aren’t really struggling. Again, 12 years in the Early Intervention field and I’m like – how do I get my kid to interact with others? He’s so frustrated; he’s becoming a little bully because he doesn’t know how to communicate – that’s how he communicates. Yes, he’s a toddler and it’s not atypical for them to get on each other’s nerves and not have the best coping strategies but still, he’s injuring kids at daycare. He’s taking out his sister’s hair. We have a new little one coming in a few months and she’s got to survive her brother. It’s a good reminder when service coordinators have these out-of-the-world numbers. These are people; these are families that are really struggling. What’s one thing that you wish you knew at the start of your career working in Early Intervention about supporting the mental health of caregivers? That families in our program might have people around them, but that doesn’t mean they have support. So, you can have in-laws who are even active in the grandkids’ life, but they could be toxic. They may think the parents are over-reacting, “You didn’t talk till you were five, you’re fine.” So, we often equate as service coordinators numbers of supports people have with effective supports – but that’s not the case. How do you think we can help and support parents to see the importance of taking care of themselves? One question I really wish we all would feel more comfortable asking families from the get-go would be, “Do you feel like you have enough help?” That might seem like a stark question that would put people off-guard, but I can tell you as a mom of 3 kids in 3 years if someone was to sit me down and say, “Do you feel supported, do you feel like you have enough help?” I’d say, “No.” And I’d probably even cry, depending on the day. Having a child under 3 is just survival mode anyway and when you add an added stressor like your child having a disability – especially if everybody in your life isn’t on board with you receiving services. As a service coordinator it’s hard to ask some of those questions because if they say, “No” – what am I supposed to do about it? I can’t stay and help you raise your children. There is no resource out there that’s going to give the family a support that their extended family would. But you are sometimes that one person outside of their realm that they can talk to – that one adult that they don’t have to fight with. So, I think that having frank conversations with families that are real and maybe a little messy but let them know it’s ok to connect with you as a human being going through these experiences. It’s a huge step forward for them to build that support outside of their realm of people – who might not be the support that they need, and to really just expand their village – so to speak. I think you’re exactly right – and this too as providers that work in Early Intervention whether we’re doing that provider role or we’re doing the service coordinator role – a lot of us weren’t trained in anything regarding mental health of caregivers. We were trained on how to work with children. And so now it’s like many of us are playing catch-up – especially now after COVID where I feel like we’re seeing a lot of families struggling – continuing to struggle. And so, there just hasn’t been a lot of training for Service Coordinators or providers.  One hundred percent – and often we think, “Oh, they live with grandparents, they have access to preschools,” but that’s not necessarily the best thing for them. So, talking about how we weren’t really trained working in Early Childhood a lot about mental health – what are some great resources that you found along the way that you either share with families or have used yourself? This one is hard because every place is so different when it comes to accessibility and even the existence of resources, but it sounds counter-productive but the best resource for families I have found are families themselves. So, I used to think that I had to be that one person who knew all the places – where they were, who all the contacts are – but if you are responsible for a large area or even a populated area – things change, especially during COVID. Places shut down. And I found it’s completely appropriate to say, “You know, I’m trying to make sure that I stay up-to-date on events and places in our areas – have you heard of anything opening up or found any cool places?”  Sometimes, depending on the family’s situation I found out about new mental health services opening or community centers with play places where they could just go and let their kids run and not having to worry about cars or weather. They can get other parents – if they want to make parent friends. If a parent has mental health needs, you think, “I need to get them access to therapy,” which may or may not be the case or even an option for them. But if you can help them build outside of what they have, that’s something they’re longing for. Our community center in town opened up a play center. It’s $2.00 for a day pass. My 2-year-old can get on and off everything by herself and just run around and get all her energy out. And if I wanted to, I could be social with other parents. It’s a brain break that we all need. And I don’t have to consistently follow her around and make sure she’s not going to break an arm. And I know we’re lucky because not every community has that. But I think there are things out there in the Early Intervention field that we don’t necessarily think about as being a resource or what the family needs. They might need therapy – but therapy isn’t typically going to be every day or at that moment where they’re at their wits’ end. So, what can they do? What can help in those moments? There might be something in your area that you’re not familiar with because you’re trying to be that one person who’s the keeper of all resources – and that’s an impossible job. Asking families what helps them, and their everyday has been extremely beneficial for other families in my area. I think that’s one thing that kind of surprised me as a parent is I didn’t realize how isolating it would be.  And not only is it isolating, then you’re dealing with this whole postpartum thing that we weren’t taught about at all until you moved your postpartum or are working with a lot of parents that are have gone from post-partum or just recently had children. You don’t know what a struggle that is all to navigate, especially when there’s not often times a lot of support. So what advice would you give someone try to support a parent who’s struggling with stress and being able to regulate around their children? I would say to have grace with themselves. The other day, for instance, my son, he pulls my daughter’s hair. He thinks it’s a game. Again, he’s one, but he has a personality that when you’re stern with him – he laughs. When you ignore it, he does it harder, to try to get you to react. And some things you can’t ignore, you know, or my daughter would have no hair. So even with 12 years of early intervention experiences, I still find myself struggling with what to do and with my own emotions, most parenting is trial and error and what makes it tough is that what works for one child doesn’t work for the other, or even that same child next month. So, to just help the parents know that they’re not alone, you know.  There are experts in this who are just as lost when it comes to raising their own children. And to be honest, you know, I yelled at Eli. I put him in time out – even though he’s only a year old and he has no idea what that means. And I did all the things in my training probably teaches me not to do because at the moment, nothing is working with this child. And you just need to know that you’re not alone. You’re part of this club of people who are given an impossible task of raising tiny people that have no logic.  So, afterwards I sat Eli down and I apologized to him for losing my temper and again, he’s one.  He has absolutely no idea what I’m saying.  But I wanted to get into the habit of reminding myself that I also have irrational human feelings. I’m expecting this one-year-old to not pull hair and I get frustrated by not being able to stop it. I judge my own parenting about that, and I go, “What’s gonna happen when he's an adult?”  Whoa, you know, slow down, Charissa. It’s easy to get on that train. A lot of us are parenting different than how we were parented. Yes.  And so, we see stuff, we hear about new things and we’re trying to implement. We’re trying to do the right thing, but then we’re still children ourselves that maybe we weren’t parented that way, or maybe we didn’t learn how to regulate.  Absolutely.  And, you know, I told my son, “You did wrong, but I also overreacted,” and I need to bring myself back into reality, but I also need to have grace with myself because I’m just an ordinary person who has been given this huge task of teaching these kids lessons that need to be taught over and over and over again before they catch on, and that can be a lot.  I think parenting, it’s, I’ve worked in early intervention a couple of years before I had my own child and I thought, “I’m gonna know what I’m doing from birth-to-three.  Like that will be the easiest part. For me, I’m gonna struggle as a parent once they get over birth-to-three because I don’t have as much training in that,” and it has been the complete opposite for me.  I have found birth-to-three to be the most challenging with my kids. Now they’re four and seven and I find it getting so much easier. Now, I’m just saying that today, it could just be, you know, it could change again, but right now I’m feeling just as a parent of older children now, like that birth to three was a struggle.  I didn’t have a lot of support. I thought I knew what I was doing – I didn’t. I made mistakes all the time and, you know, realizing that you’re human and accepting it is so important. But, I just always have that, yeah.

And I think, you know, it started even when I was pregnant – you had this idea, okay, I’m pregnant.  I’m gonna do everything right, gonna eat all the right foods, and gonna drink exactly 80 ounces of water every single day. And then reality hits and you start getting sick and you can’t keep anything down and then suddenly you’re just so tired, what you thought you were going to be like is not what reality is, and it’s just an impossible thing.  Yes, it would be great if we could all eat healthy and do all these things, but you can’t. And the same thing as when you’re a parent, it would be wonderful if we could all of us, you know, sit our kids down every day and do everything exactly correctly, but real life is a lot messier than that.  Right. And I think, I love that you brought it back to being pregnant, because that the start, and that’s where we start putting these unrealistic expectations on ourselves. And, you know, I had read all the books. I was gonna have this perfect birth and that did not happen. And then you go into parenthood and there’s a, I almost think that’s a struggle right now with parents, is it’s great that there’s so much information out there, but then we start feeling that we’re not capable because we’re not doing everything “right.” And as early intervention providers as well, we need to understand that we need to give families the okay to say, “This isn’t working.” And because I think a lot of times as a family member you take their advice and you think – well, I’m doing exactly what my therapist is saying, and it’s not working for this specific child and this specific circumstance. But they’re the experts. So, to be able to go back to have a relationship with your service coordinator or your provider and be able to say, “You know what? I’ve tried this and it’s not working,” without it making you feel like you’re telling them they don’t know how to do their job. I guess there’s a lot of families, I think, are intimidated by that. So, as a service coordinator you might get different calls from families that need various supports. What would be your advice actually to early intervention providers? When they’re going in a home weekly what are some things that they could do to be more helpful for parents as far as mental health? I think the biggest thing that they can do is build that relationship with the family to be able to have the family actually communicate with you truthfully and honestly without feeling like they’re – I don’t know if you’ve ever seen Brian Regan. He’s a comedian, but there’s this one thing where he says, you know, going to the doctor is the only time as an adult that I feel like I’m still a child, you know? Because they say, “Did you do what you were supposed to do?” I didn’t.  No, I didn’t change anything about my life and habits. What are you doing to do? I’m gonna do what you tell me to do, you know? When are you gonna do it? I’m gonna do it right now, you know? And even though I’ve been in early intervention and already a service coordinator, I had sometimes lied to my therapist, you know, about that, totally did that last this past week, because you’re kind of worried that you’re gonna get in trouble in some kind of way, and it’s not about that. It’s about building trusting partnerships with families and to the point where they can easily say, “I tried this strategy and it’s not working. What else can we do?” And I feel like that’s one thing I try to be careful with families is to not put a lot of pressure. My son was in early intervention for a while when he was little, and I remember like I had worked in early intervention. I wasn’t at the time – I was taking some time off.  And I remember her coming from the visits, telling me what to do. I absolutely knew how important follow through was and I just wouldn’t.  I had, well, at the time my son was two-and-a-half and my daughter was a newborn and I was just, it was too much. As so to get that little homework, even though I knew how important it was to do stuff and to follow through – I was not the perfect student in that situation. I think if follow through was as easy as we think it is, then all families would do it, right? So my son had torticollis and plagiocephaly and it was as simple as – do these stretches every time you change a diaper. Okay. I don’t know how many times I actually did the stretches every time I changed a diaper because you get in the middle of something, you know, I have this conference call I have to take or, oh, my other child’s crying and I don’t have time to do this.  And life just gets in the way and often I think that it’s easy for us to say, Oh, this family is not carrying over these strategies because they don’t understand the importance of it. But they can understand the importance of it, it’s just life gets in the way. That’s one of the best things that we can be aware of as providers and service coordinators that every situation is unique, and we need to adapt our way of providing services to make sure it fits the family, and it works for them. Because if it’s not working, then we need to look and we need to find different ways to support. And I think that that’s one thing conversation that we can have from with the family, right from the get-go, to just say, “You know what? I have been trained in these evidence-based strategies, but they’re not going to necessarily be effective for your specific situation and your child.”  So, is there something that we’re doing that is not working for you or that is too much for your situation at this point or however you want to word it. Just let me know, and we can, you know, brainstorm different ideas, because it’s not a cookie cutter one-size-fits-all, with the parent. Yes.  At the end of a session, I think it’s really important. And I don’t do it every time, but I’ve been trying to do it more lately because I do, I feel like if we don’t reflect back and really get, you know, what’s working for you – what didn’t work?  What can I do better next time? You know, just keep doing it, and it’s not supporting the parent. I think sometimes we also have the sphere of being open with our families. I think that we come in with our own biases about like, well, how would if I were to be asked this question, I would be offended or I would be this and you assume that other families would be the same way and, when in reality families know why you’re there and if we do our jobs well enough, a majority of families want to talk about their situations. They want to talk about what they’re doing with their children,  what’s working, what’s not working, and want to talk about mental health, quite honestly.  It surprised me. How many of your families, you know, when I’m open with them about do you need mental health services, actually, that would be great, you know, or I don’t need it for myself but my older kid, you know, and you kind of think that families don’t want to talk about it, but it’s not true. If they’re comfortable with you, if they realize why you’re there, and if you have that relationship with them from the beginning, then they’re welcoming of it. Building that relationship is so important. What’s one myth you’d like to debunk about supporting mental health as someone working in early intervention? Actually, I think you just did it. Parents don’t want to talk about it because we tiptoe around it. And I think the other thing too, is that as especially as service coordinators, we have this idea that we have to be able to fix it, like it’s our job. But, in reality there’s some things you can’t fix and you might be able to refer them to a physical therapy place, but maybe there not going to be an opening for a year and a half, you know, and you don’t necessarily need to be able to fix their problems to be part of their solution. And sometimes it’s just being present and being that one person that they can count on, makes the difference, for sure. Thank you so much, Charissa, for joining me today on the podcast. And thank you all of those at home listening to the Early Childhood On the Go Podcast. We hope to have you join us again next week. Thanks so much, Kayla. 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.