Parenting a Disabled Child: Systems, Services, and Supports with guest Kelley Coleman

On this episode of The Brainy Moms podcast, Dr. Amy and Sandy are joined by Kelley Coleman, a feature film development executive turned author and advocate for parents and caregivers of individuals with disabilities. Kelley is here to talk about the concepts and information in her book, “Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports.” Kelley is the mother of two boys, one of whom has multiple disabilities and a service dog, and she shares her own experiences about learning to navigate the world in a new way to best support the journey for her entire family. You’ll hear her advice for other parents who are parenting a disabled child, including where to find support, tips for advocating for your child, and how the process of getting a service dog works. Whether you’re new to the caregiving journey or are just looking for inspiration, don’t miss this jam-packed episode!

ABOUT US: The Brainy Moms is a parenting podcast hosted by cognitive psychologist Dr. Amy Moore. Dr. Amy and her rotating co-hosts bring listeners conversations with experts on topics in parenting, child development, education, psychology, mental health, and neuroscience. Listeners leave with tips and helpful advice for helping moms and kids thrive in life, learning, and relationships. This episode is co-hosted by Sandy Zamalis. 

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Transcript

DR. AMY: Hi, smart moms and dads. Welcome to another episode of the Brainy Moms podcast, brought to you today by LearningRx Cognitive Skills Training Centers. I'm your host, Dr. Amy Moore, here with my co-host, Sandy Zamalis, and we are super excited to bring you a conversation with our guest today, Kelley Coleman. Kelley is a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. She's the author of the new book, Everything No One Tells You About Parenting a Disabled Child, your guide to the essential systems, services, and supports. Which draws upon over a decade of advocacy gained through her own journey parenting a child with multiple disabilities. Kelley lives in Los Angeles with her husband, two boys, and her son's trustee service dog. Welcome, Kelley.

KELLEY: Thank you, guys, so much for having me and for all the goodness that you're putting out into the world.

DR. AMY: You know, as I was reading your bio, I realized we did not put your son's trustee service dog's name in the bio. Could you share that with us?

KELLEY: Her name is Hedy, and she’s fantastic. 

DR. AMY: I love service dogs. They’re amazing. We’ll talk about those during this hour.

KELLEY: Great.

SANDY: So Kelly, we always like to kick off our episode, hearing about our guest journey. And this is a really personal journey for you. So why don't you do that? Why don't you introduce yourself and your family to us so that we can dive into your awesome book?

KELLEY: Yes, thank you so much. So as you mentioned, I have two amazing boys right now. They're ages 10 and 12. And for many of us, if not most, or even all of this on our parenting journey, we definitely have an idea of how things will play out and how things will happen. And then any of us who are a little bit more down the road know that, yeah, that that's not how anything ever happens, actually. There’s always curves and twists along the road. For us, a lot of curves and twists have come, thanks to our younger son, Aaron. Our boys are both hilarious and quirky and the best of friends and all the things. In addition to that, Aaron has multiple disabilities and we started on our diagnostic odyssey with him. When he was an infant, that’s when we started accumulating some of the sub-diagnoses. He has an undiagnosed genetic syndrome and we’ve done very test science has available. And within that epilepsy, cerebral palsy, autism, microcephaly, cortical vision impairment, feeding tube, tine motor, gross motor, behavioral, medical. Like he’s just an overachiever and he’s like, “I’m just gonna check all the boxes.” So that’s his thing. And I always feel like when I say that I need to give the caveat of, and he wakes up and is happy to be in the world and do his thing. And his is the mayor of Trader Joe’s. He loves going to school. Like, there is so much about him that is not only healthy, but vibrant and joyful and wonderful. And I think that’s a piece that people need to hear in terms of talking about kids with disabilities. His connection to the world is different than mine. That’s okey. And also we can talk about our kids being vibrant and joyful and all the things at the same time as we talk about being a caregiver. For me, that is a full-time and forever job and there’s no training for that. It’s just like, “Here’s your kid. Good luck.” And sometimes the caregiving piece is really hard. There’s a lot about him I wouldn’t change. But the epilepsy, the vomiting, like the, some of the medical stuff that does cause him suffering, I would. And I think, you know, my journey has evolved to this point of realizing and genuinely believing that we need to talk about all the things; the good and the bad, the hard, the easy, partly for our own mental health and also so that our kids understand. Like, man, being on the phone with the insurance company all afternoon, that’s hard. But who you are as a human, like, that’s not hard. You’re awesome. Let’s go watch airplanes in the driveway for an hour. And our kids can fully embrace everything about them when we are talking about all the things that are going on in this life.

DR. AMY: So did you have this collection of “Aha!” moments where you said, “Oh, my gosh! Nobody told me this!” Or “I wish somebody had told me this before, that made you start thinking, “I’m going to write a book. I’m going to start collecting these things, that people, that moms need to be smarter about, that dads need to be smarter about”? Tell us how that clicked for you.

KELLEY: Yes. So “Aha!” moments happen constantly. My son is 10 and just this morning, someone sent me something from their tax preparer about disability finance stuff. So there are “Aha!” moments all the time because when it comes to parenting a disabled child, no one really tells you anything and that needs to change. Starting with just discussing the fact that disability is everywhere. It is no inherently a tragedy. It’s also not inherently inspiring and superhero and like, “Isn’t this great?” It’s just, it’s math. It’s going to happen to many people, whether children, adults, and otherwise. For me, this was the book that everybody said, “You should write a book. You’re really good at figuring out how to do all the stuff.” And I said, for years, I will never write that book. That sounds really boring and I’m already too far into this world. And then my mind shifted very quickly. One day we are in a great phase with all the things and managing all the medical stuff. And then Aaron had a really hard night and seizures and vomiting and just all the things. He finally got to sleep. We took him to a therapy the next day that he just loves and I said to the therapist, “I’ll be at the coffeeshop next door. Like, call me if you need anything. Like, he seems good.” And so I sat down, I was like, “I’m gonna get myself a fancy coffee and like, just write something,” because I was already a writer by trade. And I sat down and I just started crying. So I was like, “I cannot step out of all the stuff, really ever. And I’m good at this. And this is really hard for me.” And I check a lot of demographic boxes of privilege that statistically speaking, make this easier for me. And I was so upset that not only is there no training, but that all of us are reinventing these exact same wheels over and over. And I just realized I’m actually so passionate about sharing this information and all of these templates that have just been sitting on my computer desktop for the last decade of getting this information out to other families so that we’re not reinventing the same wheel, so that we’re not terrified of what disability will mean for children and families, but that we can be objective and that we can see the caregiving piece as a role in addition to parenting that is a job and we can support each other in doing this job so that we can spend less time with all of the paperwork and the planning and all that awful stuff that’s never going to be fun. Maybe it will be. Call me, let me know if it’s fun for you. But we can make it manageable, and we can make life as a caregiver sustainable over time. If we are not reinventing these same wheels, and we are creating system so that we can do the things, and then just go to the park with our kids, and just be a mom who’s covered in ice cream instead of trying, overwhelmed by all the stuff. 

DR. AMY: All right. So I’m going to monologue here for a minute because I had all these things pop into my mind while you were talking. So, I was thinking how wonderful it would be to have a resource like your book in that library of parenting books when we’re pregnant, right? “Hey, here’s what you expect when you’re expecting.” Right? “Here’s what might happen in the first or second year of life. You know, here’s some ideas for discipline. Here’s some ideas for breastfeeding. And, by the way, if your child is born with a disability, here are some things that you can expect and what you might be doing.” Right? But what happens is we’re pregnant. We’re romanticizing what being a new mom is going to look like. Having a disability is not on our radar. A child with a disability, that’s not on our radar, right? Because that would be our worst nightmare. So why would we, why would we think about that? And then you actually write that when your child is diagnosed with a disability, the physician comes in and says, “Unfortunately, I have sad news.” Or, I don’t know how to say this.” Okay, so not only are you prepared, right? Because you haven’t picked up a resource or even knew there was one out of there, because you wouldn’t want to acknowledge that possibility. But now the physician is priming you for this catastrophic season. 

KELLEY: Yes. Yes. I’m so glad you said that. And just to highlight some of the things you said. Because of how disability is just kind of brushed under the rug and ignored and never talked about ever. But then when it is, the tragedy and the pity is just heaped onto us. It does make it feel like this is catastrophic. “This is a nightmare.” Like, my kid is, like the mayor of the world and we are just like living in his world. He is not a tragedy, but all anyone tells you, especially in the beginning, is, “I don’t know how you’re going to do this. Oh, my gosh. I can’t even imagine. I am so sorry. What are you going to do? I’m so sorry. This is horrible. I can’t imagine.” And that is all you’re hearing. If, instead, someone in the baby classes you take at the hospital were to say, “Hey, before we learn to diaper your baby, FYI, here are the statistics on kids born with disabilities. One in 33 children are born with a birth defect according to the Centers for Disease Control and Prevention. One in six children will be diagnosed with a developmental disability. One in four adults has a disability. Not saying this to scare you. Saying this because it’s math. If this is one of your children, come to us. We have resources. Now, let’s learn to diaper your baby.” It’s as easy as that. Because by acknowledging that disability exists in a totally neutral way, it doesn’t seem like, “This is a catastrophe.” And that is exactly how I felt in the beginning, and I was a mess. Four years and could barely function because all the messages I was getting were how tragic this was. And I was not getting any information about disability from actual disabled people. And it turns out when you are, everything is easier because you’re seeing an objective firsthand account. And I have many friends with disabilities. And yeah, they’re not tragic either. Like, it’s just Thursday and they’re just going grocery shopping.

SANDY: So the other hiccup then, you know, you have this catastrophic conversation with your doctor or your caregiver, if that’s helping you early, then you’ve got to turn around and have conversations with family. Right? And then all of a sudden there’s the onslaught of people with well-intentioned, good advice. How do you deal with those hard conversations with family? How do you switch that gear?

KELLEY: The family piece can be one of the trickiest things and often is for many people and it’s so important to talk about and to take into consideration cultural significance. Whether it is culture of origin, nationality, religion, there are so many pieces that can factor into that. I’ve talked to people whose culture gives them a positive view of disability, and therefore they felt like they were further along in their journey. I’ve talked to people who said, “My culture views this as an actual curse that was placed on our family and we are being shunned,” as I’m like breastfeeding my infant, who’s adorable and wonderful. So, it is a mess. And if you are a parent who’s feeling like this is a mess, congratulations, you’re right on track. It is okay, and sometimes very necessary, to create boundaries for yourself. And to know that that is what you might have to do to protect your own mental health and your child’s, your family’s. Let the babysitter get you fancy coffee or whatever the thing is. Yes, you can do those things. Sometimes saying to people when they have the, “Oh, you poor thing.” And “Oh, this is such a tragedy.” Say, “That’s not helpful. I can’t believe you said that out loud. What is your goal in saying that? Because that makes me feel worse.” Or even saying, “That is not in line with how I’m feeling. That is not in line with how I want to feel.” And it’s okay to say, “I don’t know what to say to you in this moment” to someone who has gotten a diagnosis for their child, for example. It’s okay to say, “I don’t know what to say. I want to be here for you. I’m going to brainstorm ideas. But if you have ideas, you just let me know now, or a month from now, or five years from now.” Oftentimes people will show up with offers of help in the beginning. And then, understandably, the offers disappear because everyone gets caught up in their own life. You know, meanwhile I’m diapering my 10-year-old. So, it is an ongoing thing. And I think having an awareness that even those who are closest to you might not respond in a way that is helpful or appropriate is an important foundational thing to know. Let people surprise you. Let people be wonderful. Let people say the right things but figure out what your boundaries look like when the right things aren’t happening, because it can be, and I speak from experience, it can be incredibly painful and damaging when people are just keeping on the tragedy.

DR. AMY: Yeah, and I think that they have to be able to, well, I think the whole conversation needs to be balanced, right? Because one of the things that we risk happening when we shut that down, when we say, “Hey, I don’t need you to feel sorry for me. I don’t need you to catastrophize this,” then we risk them not seeing us in our struggle when it does arise, right? Because we’ve shut down the sympathy, the empathy, the catastrophizing, in whatever measure they’re offering it. And then, when we are really struggling, when we are really having a bad day, when we really need to be seen, then we don’t want them to be afraid to show up for us in that way either, right? So it’s this delicate balance of being …

KELLEY: Yeah. It’s a mess.  It is. And I think as much as we can, and we can’t always do this because that’s not how humans work, as much as we can try to be in touch with what we need and express, “You know what, I just need you listen to me right now. Period. Are you able to do that? I just need you to send me dinner tonight. Are you able to do that? No? I’m gonna go do another thing.” As much as we’re able to express, and if that person says, “You know what, I can’t just listen right now because I have to tell you how to get your kid to eat so he won’t have to have that feeding tube anymore” then I can be at liberty to say, “That’s not what I need. That’s not healthy for me. You go have that conversation with yourself. I’m going to go blend up some food for my kid’s feeding tube.” 

SANDY: One of the things I love about your book, Kelley, is kind of the journey—you call it The Odyessey, which I love—but the journey of even from the very beginning, because the conversations you’re describing happen with family, but they can happen with, you know, physicians as well, where you’re not getting the feedback that you need. You know something’s wrong. You know, your “mama bear” alarms are going off and you’re not getting the right help that you need. And the process you lay out in your book is really helpful of like, “Okay, we need to document. We need to ask questions. We need to be consistent.” How would you help parents who may be on the journey that don’t have a diagnosis like your son had, that you have to kind of push that needle forward so that you can get the help that you need.

KELLEY: Yes. And I love that you ended that with “so that you can get the help that you need.” For parents who are on the Odyssey right there with us, whether it is brand new to you or you’ve been on it for decades, what is your goal? Your goal is to best serve and support your child exactly as they are for the unique human that they are. And we need to lean into that. We need to first view a diagnosis as information. It is not suddenly making your child tragic. If you’re like, “They have autism.” I’m mixing all my words together. Microcephaly, autism, feeding, like whatever the thing is. We need to start viewing that as information. And then you need to ask yourself, “What more information do I need in order to take the next steps?” It could be for my own mental health. It could be for supporting my son. What information do I need? And a lot of the book is checklists and questions to ask yourself. And I’m sure you guys have seen this in your own professional lives every day of families coming in and not even knowing what questions to ask. Whether it’s asking of a specialist or how do I get a second opinion. And I think that, for me, those have been the scariest moments when I don’t even know where to start. When we are thinking about pursuing a diagnosis, if we’re pursuing one but we’re not getting answers, know that talking to other families and talking to multiple medical professionals, seeking out a second opinion, literally every doctor I talked to for the book—I have over 40 experts in there, many of whom are disabled themselves—every single doctor said, “Don’t be afraid to seek a second opinion.” I’ve never talked to anyone who said, “You know what? I’ve turned over way too many stones figuring out the best path for my kid. I just, I just did too much.” Like, “No, we’re good.” But also, if you’ve waited or you’re uncertain, there’s no shame in saying like, “Oh, my gosh. I waited till my kid was 10 to get a diagnosis” or whenever. But start by asking yourself what information you need in order to take action. And that might be a second opinion. That might be going back to that doctor’s office and saying, “I got to be honest with you. You told me so much information and I left the office and forgot it all because I didn’t understand any of it. So I’m here to ask you to explain that to me again, and this time I’m going to take responsibility to stop and ask you questions. May I audio record this conversation? I’m taking notes.” Whatever you need to understand—if we’re approaching diagnosis through a place of what we need to understand, our family, and especially our child, and especially as it might impact their course of treatment, academics, all of the things—you really have to do the detective work, which is exhausting. But it gets you to a point when it is actually less exhausting because you’re able to answer those questions in a way that allows you to serve your child.

DR. AMY: Yeah. And so I think that it’s important to recognize that, as parents, we’re the ones that see our kids all day, every day and all night, every night. We are the biggest experts on our child’s behavior and functioning, right? We’re not necessarily diagnosticians, but we can speak of what we’re seeing all the time. And so if we go to a pediatrician and the pediatrician … not everything tis diagnosable through a blood test. So if they’re using a checklist, right, of a cluster of symptoms, and they’re saying, “So I, you know, this is consistent with this diagnosis” I think we need to feel the freedom to push back and say, ‘Hey, I don’t see that at home. I’m not seeing that. I’m not hearing that from my child’s teachers. That doesn’t sound like it fits. What else might this be as well?”

KELLEY: Mm hmm. Absolutely. And really viewing yourself as a partner in the process. And that means that you have an equal say. And you are absolutely right that you are the one who is with your child all day and knows your child. Also, a partnership includes more than one person. So if you are walking into your clinician’s office or into the teacher conference saying, “I know everything and here’s what the outcome in,” you’re not actually being a partner. You’re just blustering. But asking yourself how you can be a partners, the person across from you might be great at it, or might not be so great at it. But going in with yourself, having the questions and being a partner, bringing up exactly what you said, “I’m not seeing that at home” or “I’m seeing something different at home,” you know. Our son Aaron’s course of that has been a constant lesson in that from the time when he was an infant. And I kept bringing him to the pediatrician’s office saying, “Something’s going on. Something’s wrong. I don’t know what it is.” And they would do all the tests. They would check all the lists and they would say, “He’s checking all the boxes. Everything seems fine.” And our pediatrician, who is the epitome of being a partners in the process, she said, which has been so meaningful, she said, “Come in here as often as you want. You do not need an appointment. We will always see you. We will always listen to you. We will make notes. We will pay attention to everything that you are telling us. Even if you are wrong, you are not going to regret advocating for your child, because what if you’re right? There are, there’s nothing in these tests that indicates anything is abnormal, but you’re telling me there is, so I’m going to listen.” And that’s what we are looking for in our clinicians, is someone who will listen. And for ourselves, we can do our best to be level-headed and calm and not yelling and screaming and it’s challenging to deal with, which can be hard. But always advocating for your child and ultimately teaching them to advocate for themselves.

SANDY: You’ve talked about this being pretty much a full-time job and will be your forever job. Let's talk a little bit about self-care for caregivers. What has that journey been for you? Where are you in? I'm sure that's in stages, right? Because your son is 10. So there's still a lot to do. Let's talk about that a little bit because I really feel for that, mostly for families, especially that have severe disabilities or things that they're working with. It is a humongous understand and it, you know, can lead to burnout and lots of things. So taking care of yourself is absolutely important. 

KELLEY: Absolutely it looks different because I have a kid who has disabilities and who requires, who has many support needs and requires a lot of care. In the beginning of the journey especially, I had so many people saying, “I’m so worried about you. You should take a yoga class.” And I’m like, “I don’t want to take a yoga class.” And everyone seems to have an idea of what your self-care should be. And I think as a caregiver, you need to think about and perhaps entirely rethink what you, as an individual, need as self-care for you. For me, it looks very different day to day, month to month. For me, self-care looks different depending on the day, the month, the year, and is always evolving as a caregiver. I’ve realized it’s not just a yoga class or spa day or whatever the thing is. It’s creating a system that allows everything to be sustainable. All the paperwork and the planning and the IEPs and the medical appointments, all of the stuff, so that I can actually make the space both mentally and on my actual schedule to do the yoga class or the spa visit or whatever the thing looks like. I have found that so often for myself and for so many other caregivers, we feel guilty or feel like we can’t take this time because there is an exponential amount of stuff to do that is often urgent and that is often essential and that can’t actually wait. And you can’t always put yourself first and go to the gym before you tackle the things. Well, there’s a deadline so you gotta tackle the things. There is a lot, certainly not everything in our case and many others, there’s a lot that you can anticipate. And even things as simple as putting reminders on my calendar to schedule these annual meetings, to put these annual appointments on the calendar. And I schedule the annual IEP meeting, I schedule the annual social service meeting well in advance of the deadlines. I schedule time to do the preparation for that. I ask for the evaluations. I do all of the things. And that small amount of cognitive labor of mapping things out that can be expected allows you to take away the giant amount of cognitive labor of “Ah, this needs to happen next week and I’m freaking out.” And then your week is just kind of gone. I think really creating systems is a super boring thing to talk about, but is actually self-care. And making this sustainable is kind of the ultimate self-care because then you can start to make space for yourself as a person in addition to being a caregiver. 

DR. AMY: So the systems almost make the parenting process more of a well-oiled machine so that it frees up time and energy to do those other things that might be for yourself. 

KELLEY: Absolutely. And by viewing this as a job, it makes it easier to compartmentalize. “Oh, the job of caregiving stuff. Oh, I’m frustrated over the stuff, not actually over the parenting piece. And you’re able to view parenting as parenting when you can view all of this stuff as, “This is a job that I need to make happen.”

SANDY: Let’s talk about the difference between visible and invisible disabilities and how we can kind of talk about that with our families, with our kids. Let’s differentiate between the two and then dig in a little bit.

KELLEY: Mm hmm. I’ve had so many great conversations with disabled people, especially disabled adults, about this. And something I learned is that—I’m trying to retrain my language. I’m so big on language and it’s hard for me, even though I’m trying—is that many people prefer the term “non-visible” because they hear the word, disabled people and disability have been made to feel invisible. It’s such a tiny shift. But when friends tell me that, I say, “Yes. I will listen to that.” When I say to people, “One in four adults has a disability, many people are like, “Nah, they don’t. I don’t see disabled people out in the world.” You do. They just don’t fit your stereotype of what a disabled person would look like. And disabilities might be visible, for example, someone in a wheelchair with a limb difference, with something like Down syndrome that has a specific presentation, with medical equipment, feeding tube, trach. There are many ways that a disability can be visible which means you can see by looking at someone. When a disability is not visible, it's something that doesn’t have any clear markers of a disability. But there are many things—cognitive, behavioral, developmental, mental, even physical things that, you know, are happening on the inside that people can’t see. Because my child’s disabilities are visible, it is clear by looking at him that he is disabled and he’s cool with that. It’s interesting as a parent to see how people actually do give him a tremendous amount of grace because they see this adorable little kid with great hair and he is squealing and dancing at the lettuce in the grocery store and they’re like, “Oh, cool. I get you.” Whereas friends whose children’s disabilities are not visible—and certainly a lot of neurodivergent kids experience this—when they are squealing and clapping for the lettuce, that the parents are told you need to quiet your kid down, you’re a bad parent, control your kid, and like all of these things. And it becomes very messy because there’s the factor of, do you explain away behavior that others might see as undesirable by saying, ‘Oh, my kid is disabled”? Well, no. Because then you’re saying this quote unquote “bad thing” is because of disability and then you’re sending the message that disability is bad and certainly to your child who’s hearing people think this is bad. “I’m disabled and that must be bad.” And your child might be someone who is not comfortable sharing that information. So it can be tricky because especially as non-disabled parents, we want to best support and represent our children. And I’ve talked to many parents with disabilities who struggle with these same things of their children’s disability may or may not be visible. But how do we not walk through life apologizing for our children and their disabilities and embracing all the things that they are and also acknowledging like, “Yeah, people in the movie theater aren’t used to his squeals, so I might need to have a conversation about this.”

DR. AMY: Yeah. I know that personally—so I use the term “invisible” because I have invisible disabilities and I have, you know, a disability placard for my car, but I don’t look disabled in any way. And so there’s always that, but I have dysautonomia and POTS and some other neurological issues that allow me to park up front. And so I get out the car and the first thing I think is, “Should I walk more slowly so people don’t look at me and think ‘she’s not disabled,’ even though I don’t need to walk more slowly? That is not my disability, right? And so it’s one of those things where you think, “What are people going to think? And how much do I feel like I have to share with total strangers?”

KELLEY: Thank you. And thank you for sharing that information and for bringing up that, like, how much do I feel like I should or want to share with total strangers? Cause you don’t have to share anything. But at the same time, I’m sure you’ve gotten people who are ignorant to all types of disabilities who are like, “Oh, what are you doing parking there?” and you’re just like, “Don’t. Like, no.”

DR. AMY: Okay. So we need to take a break and let Sandy read a word from our sponsor. And when we come back, I want to talk about that sibling dynamic and the challenges of parenting a child without a disability in the same family as a child with a disability and what that looks like for the sibling and how you alter your parenting styles.

SANDY: Aaron’s dream is to play lacrosse at a Division 1 university, but he was struggling so much academically that he worried it might not happen. But things changed after he completed cognitive skills training at LearningRx. He became independent in managing his assignments and homework and studying for exams. His grades improved so much that he was accepted into his dream high school to play lacrosse. His mom says, “Tutoring is a Band-aid. It’s not really going to fix the underlying issues. LearningRx has just been a complete lifesaver.” While your child may or may not achieve these same results, LearningRx would be happy to work with you to get answers about your child’s struggles with learning. Get started at LearningRx.com or head to our show notes for links to more helpful resources.

DR. AMY: So we are continuing our conversation with Kelley Coleman about parenting a disabled child. So let’s talk about parenting a non-disabled child at the same time. You know, in my house, I always like to joke that we had a living psychology lab, and so all of my kids had some diagnosis or more than one, so that was not a dynamic that we faced. But I have friends who have children that are neurotypical and some that are neurodivergent or disabled, and so it seems that the child without a disability sometimes lacks for something in some way, right? Like they’re not getting enough attention because all this attention is required for the disabled child. How do you find the balance? How do you talk to your kids about different needs for different kids?

KELLEY: Mm hmm. The sibling piece is something that I talk about with other families so often because it is always on our minds all the time. And the reality is, one of my kids does get much more time and attention than the other because one’s eating a sandwich and the other one I need to administer his feeding tube and that’s lunchtime. So it is a constant conversation and I think knowing that it is a constant conversation where your kids are encouraged to not just say, “Isn’t this the best?!” if that’s now how they’re feeling. Creating a space where they can say how they actually feel so that you know if one of your kids is like, “You know, Mom, I’m really bumming because you’ve been at the hospital for the last week and I had a soccer tournament or a speech-and-debate meet” or whatever the thing is and “I’m really, I’m bummed” or “I’m mad at you” or whatever the thing is. Keep the conversations constant. Keep it ongoing. One of the experts I interviewed for the book is himself an adult sibling of a woman who is disabled and he and his sister remain close in their adulthood. And he has dedicated his career to what is the sibling experience and how do we support siblings? And he said in his years of research, the number one indicator of how a disabled sibling will feel about the disability and about his life is how their parents view it. [video cut out] You’re like, cleaning barf out of your hair. What it means is if you think, “Oh, my gosh! Isn’t this awful? This is so hard.” And you’re just leaning into how this is really rotten, that is how the sibling will feel. If you’re like, “You know what? This is our family. We do not do things like other families, but we’re pretty great, aren’t we?” That is how the sibling will feel. So know that your attitude and mindset around it is the number one thing that is going to influence that child. And the goal, which I loved that the expert voiced, he said the goal is for them to remain lovingly involved in one another’s life for a lifetime and to not force the things onto them. If my 12-year-old doesn’t want to stand in the driveway for an hour and watch airplane, don’t force him to do that. Like, it’s okay if he goes inside and plays Legos. Don’t force him to be a part of all of the things, to be his brother’s caregiver when he wants to be at a playdate with his friends. Really build the relationship, including acknowledging when it’s hard for each of the kids and talking about and just being someone that they can always talk to because if your goal is that loving involvement, you also need to let them see what that’s going to look like for them.

SANDY: Let’s talk about … I love this mindset kind of road we’re on here. So, one of the things that I wanted to ask you just from a … you know, when you write a book, you’re, of course, going to share the things that you wish you could have done differently, right? “Oh gosh, if I knew more, I would have done this instead.” Do you have any of those pieces? I don’t want to think of them as mistakes because they’re not. You’re always making decisions based on the information that you have. And that’s the best choice you could have made in that moment. However, we do tend to look back and look at things. What would be something that you would want to share with other parents that you learned from that you would want to save them the process of having to learn through that particular choice that was made that maybe we could have been made in a different way or better.

KELLEY: As you’re saying that, two things immediately come to mind. Number one, which I mentioned earlier, is getting information about disability from disabled people. It is as simple as following individuals, influencers, leaders, organizations online. And just putting that into your feed can start that process because then you are getting real and usable information in a very different way. So that’s number way. And number two is, so many of us isolate because we are just tunnel vision of, “We have to figure this out.” And the friends and family around us don’t necessarily understand any of it, and maybe they won’t ever. Instead of staying in the tunnel for so long, I really wish I had connected with other families going through this experience much sooner that I had. I made things so much harder on myself because I wasn’t, I was reinventing the wheels, not realizing like, “Oh, somebody in the next neighborhood over actually can explain to me how to do that much easier. The online support groups absolutely count. Reaching out to organizations and asking what sort of groups or support they offer. And especially just the tiny personal connections that we can developing into great friendships of when you’re taking your kid to therapy. Seeing in the waiting room every day, you know what, maybe have a conversation with them. When you’re doing school drop-offs and pickups, connecting with the people around you who are having a similar experience is a total game changer.

SANDY: So building community is … do it as soon as you can.

KELLEY: Yes.

DR. AMY: So let’s take a couple minutes and talk about service dogs. Talk about the process of getting a dog. Is there a waiting list? Who pays for it? Where do you start?

KELLEY: Yes. So the number one place to start, if you're considering a service dog, is look up organizations, look up their websites, and before you go too far down the rabbit hole, if you see an organization that you think might be a fit for you, make an actual phone call and talk to an actual human. There are many great organizations out there. I hear there are some that are not as great and you need to find out that is this organization somewhere that will be around for a while so they can offer you ongoing support and are they actually training dogs in the tasks that you will specifically need to mitigate this disability? A service dog is different than an emotional support animal. They’re absolutely very legitimate and important emotional service animals. What we have is a service dog and the difference is a service dog is specifically trained in tasks to mitigate the disability and the task specific is what makes the difference. Different organizations train their dogs differently, works with families differently. The organization we worked with, Canine Companions, was the right fit for our family in terms of the skills and the clients that they work with. They work with many different types of clients. They don’t have guide dogs, for example. They don’t have seizure alert dogs, for example. But some of the task-specific and sensory-input stuff has been really important for us. And I talked to them about fees and training and waitlists and all of the nuts and bolts, which is very important to find out up front. Some organizations, like ours, are fully funded by donations. So the dogs are free when they are matched with the clients, as is the training. Others, you might pay literally tends of thousands of dollars, very legitimately for a well, properly trained service dogs. Some people do fundraising for that. Some people are fabulously wealthy, write a check for it, and that’s awesome. If you can do that and feel free to find other people’s service dogs too. But there are many different funding options depending on your location and organization disability. In terms of wait lists, it also depends on the organization, but also on your child’s presentation or needs or tasks required for the service dogs. For ours, the wait list can be up to two years. I’ve talked to people it was slightly more. Ours was considerably less than that because they match their specific dogs. So they had a couple of dogs that were fitting the profile of what our son needed and therefore we got invited to come to a training session with a dozen other families, many of whom had similar support needs. And because the dogs were the right match for him, it was a shorter waiting period. If all of the dogs they had were expert hearing dogs, assisting people who are deaf, then we would not have gotten called as soon. So it really can vary. And that’s why it can take so long is partly the demands and the wait lists, but also partly that you want to be sure the organization is really matching your specific thing. And for our son, having the dog has been great, not just in terms of task specifics, but being a bridge to the world when we are out with him and he is, he is loud and proud with all the things and he is squealing and cheering and, you know, having a party in the elevator. And people absolutely look at him differently when the dog is with us versus not. And for us, he’s not yet able to articulate the extent of his mental health. But I’m certain that if everyone looked at me and went, “Uh!”—wich is what people understandably do when they hear him, and his noises can be jarring—and they look at him and they’re like, “Whoa! What’s that?” Versus when the dog is there, they turn and look and the first thing they see is the dog and they smile. And then they’re looking at my son and smiling and how the world views and interacts with him is absolutely different when the dog is with us. So that is something that, while that is not a specific task that she does, has been really significant for us.

DR. AMY: That’s so beautiful. I’ve actually never thought about it that way before, but then when you reflect on what emotions does it bring up when you see a dog in general, those of us who love dogs, right? That’s the first, “Oh, look! A cute …” right, whatever. And so it does kind of prime your reaction then, you know, to something that might otherwise be viewed, you know, as off-putting or negative coming from a child.

KELLEY: And even just wildly unfamiliar, most individuals and certainly other kids are not seeing kids with significant disabilities out in the world, maybe ever. And instead of kids saying, “Whoa! You are nothing like me. I’m going to just pretend like I don’t see you and walk over here.” They’re looking at my kid and they’re saying, “You love dogs. I love dogs!” And they come over and they talk to him and he’s very social and he really wants that interaction but doesn’t yet fully understand how to facilitate that himself. And the dog plays a big part in that because it is giving an entry point and a point of commonality. And so kids no, “Oh, I have something in common with this person.” Not just, “Whoa. He’s squealing. That’s weird. See you later.”

DR. AMY: Yeah, talk a little bit about how other parents can guide their children in interacting with a child with a disability who has a service dog. Can you pet the dog? Can you talk to the dog? What should parents say? “Oh, don’t look at them. Don’t bother them. What, like, as a mom and someone who is in this space, give us some advice there.

KELLEY: Yes. So I get that it’s hard. I get that it’s unfamiliar. And I think anybody who’s just saying, “You have to do this,” take into account that we’re humans. I think most of us grew up with it. With the, “Don’t stare, don’t look, pretend like you don’t see that person, that wheelchair.” I know you see my kid at school. He knows it too. So the just ignoring and pretending like we’re not there, it’s really yucky for everyone. And I’m sure as a parent, you feel yucky doing that. And we need to talk about things. And it’s okay to say to your kid, “Oh, I see him too. Oh, he looks like he’s having a dance party in the elevator. You like to dance, don’t you?” And we can be curious about other people without staring and making faces and being creepy and all of the weird things. But if we’re teaching our kids to be curious about other people, about other children, it is really such a wonderful way to approach any human. And my son’s feeding tube is a great example that, of course kids are going to stare at that. Most people have never seen a feeding tube. But when I see a kid staring and I say, “Oh, check this out.” And I’m like, “Oh, how cool is this? Do you want to see?” Then they’re hearing, “This is cool. And I do want to see.” And again, because my son is very comfortable sharing this when we’re saying, “How cool is that?” Or “That’s interesting.” Or “Yes, that person is in a wheelchair and people move through life differently and they’re buying salad just like we’re buying salad.” Being curious, connecting the dots and with service dogs, any service dog, you should not just go up and pet because they are working dogs. They’re there to do a task. And you absolutely can approach and ask the person—talk to the person, not to the dog—after you’ve gotten permission, then you can say “hi” to the dog. But talk to the person, ask if you can pet. The majority of service dogs, because they’re working, the petting and the attention can be distracting, so you are not able to pet them. With our son’s, the social bridge piece is an important part of that, so if people ask permission and the dog is sitting or laying down, then the answer is “Yes, you can pet the dog.” And I’m genuinely impressed by how often kids know to ask and whether that’s because she’s a service dog or whether that’s because they know not to pet strange dogs. I find adults actually jump in and start petting the dog more often than kids do because kids know, ‘Oh, I should always ask.” So, as a general rule, don’t jump in and pet a strange dog.

SANDY: I know we’re getting close on our time being up to with you, Kelley, but I think it would be really important to make sure we address children who advocate for themselves. In your book you often come back to teaching kids to advocate for themselves and how important that is. So let’s talk about that a little bit here at the end. Why is self-advocacy so important?

KELLEY: Self-advocacy is so important for all of us, disabled or not, children or adults, and that’s what we’re teaching all of our kids, not just our disabled kids. For some kids, that means participating in an IEP meeting and crafting the goals and doing all the things. A kid like mine, who does have cognitive disabilities and is an emerging communicator, coming up with goals, not his jam. So for us, looking at everything situation, how can they self-advocate knowing it looks different for every kid? And for us, even simple things like, “Do you want to wear the red shirt or the blue shirt?” He chooses the blue shirt. He chooses the blue shirt. Cool. And he might grab it or he night, he communicates with the device. He might choose blue on his device and tell us that way. The simple act of giving your child choices that you will listen to and honor is a great way to build that foundation. Even children who can’t communicate independently, they still have some level of communication, even if it’s facilitated. And that is very legitimate and we need to teach them that their communication will be listened to and honored. If he tells me he wants to go to Disneyland today, I’m going to say, “No.” I’d love that, but no. But I can listen and say, “We’re not going to do that today, but let’s look at pictures of Disneyland or let’s talk about when we went there. Building in those small pieces, especially as our kids’ communication is emerging, is teaching them to stand up for and to advocate for themselves and therefore when the bigger things come—whether it’s a creepy person that we want them to be like, “No” and run away, whether it is in school saying, “I can’t see the blackboard.” By the way, that shows how old I am. They don’t have blackboards anymore. Cool blackboards. Look, Google it, people, if you don’t know what it is. Millennials, I gotcha. But saying, “I can’t see Can I move closer?” You know, whatever it is. It’s really exciting when they’re able to self-advocate and it start with those tiny little choices.

DR. AMY: So what have you not gotten to say today that you still want to leave our listeners with? You know, what do you want them to know about your book and why they need it? Just wrap up with whatever you want to say.

KELLEY: Yes, so this book is such a passion project because again, we are just reinventing these same wheels. Nobody knows how to call their insurance company or financial plan for kids with disabilities and the asking questions specialist. It’s all of the stuff and here is the foundational information so that we can actually walk in with knowledge to build our own journey. It’s not about finding the one thing and “This is what works.” Wouldn’t that be nice? There’s not a one thing that works. It’s about how can you build a journey that works for you and your kid so that you can do the hard things, do the easy things, but most importantly, just fully support your kid and yourself and your family exactly as you are without being overwhelmed by all this stuff.

DR. AMY: I love that. Kelley Coleman, thank you so much for being with us today. Listeners, you can find more about Kelley at KelleyColeman.com. And that is Kelley E-Y, not just Y. Her Facebook handle is Kelley.Coleman.56. You can find her on Instagram, HelloKelleyColeman. We’ll put all those links in our show notes, along with a link to buy her book, “Everything No One Tells You About Parenting a Disabled Child; Your Guide to Essential Systems, Services, and Supports.” We’ll put all of that in our show notes. So thank you so much for listening today. If you liked our show, we would love it if you would follow us on Instagram, Facebook, TikTok, all the socials at the Brainy Moms. You can also find us on YouTube if you would rather watch us at the Brainy Moms. Be sure to leave us a rating and review on Apple Podcasts so that we can reach more smart parents like you. And that is all the smart stuff we have for you today. Catch you next time.