Hey there, and welcome to the show. I’m so glad that you’ve joined me. Today’s conversation is going to center around helping new parents who have learned that their child has a disability. I’m going to introduce you to an amazing woman. Her name is Kelly Coleman, and Kelly is a feature film development executive turned author. She is an active advocate in the disability community.
She serves on committees that support the Los Angeles Unified School District, the Children’s Hospital of Los Angeles, and Canine Companions. She’s the author of the incredible book Everything No One Tells You About Parenting a Disabled Child, which is full of so much wisdom and practical advice.
It’s the stuff she wishes she had known when she learned that her son had a disability. I think you’re really going to love what she has to say, especially her tip about how to prepare everyone on the airplane when you’re flying with your child, who might make a little bit of noise. So stay to the end so you can hear that great idea. You’re going to love what she shares with you. So, let’s get started.
In the first three years, children grow and learn faster than at any other time in their life. It’s an amazing transformation. And guess what? Parents grow too. I’m Ann McKittrick, the mom of three kids, and I’ve helped hundreds of parents in my 30+ years in early childhood education. The key to success is understanding not only your child’s development but your own growth as a parent too. It’s about finding strategies so you can all flourish together. Welcome to Parenting in the First Three Years.
Hey, Kelly, thank you so much for joining me on the podcast today. I am so excited to speak with you and talk about your book and your life. Thanks for being here.
Kelly: Oh, thank you for having me and for the remarkable focus you’re putting on these kids, these families, and this age group. As I’ve been listening to your podcast, I’ve had so many lightbulb moments. My kids are years beyond the early childhood phase, but so much of what you say applies to everyone, including families in the disability community, which is where I’m coming from in so much of my parenting conversation. I have one child who is disabled and one who isn’t. As I listen, I realize how much of what you talk about applies, but in slightly different ways.
Ann: Thank you. I appreciate that! Why don’t we start by you telling us a little bit about your parenting journey. What’s happened with you?
Kelly: Yes. Well, it’s been a very epic parenting journey. Our boys are now 12, almost 13, and 11. When our older son was born, he was the stereotypical easy baby. Clearly, we thought it was because we were such good parents, and we had everything figured out.
Ann: (laughs) Right.
Kelly: We thought we were great at this, and then our second son came along. He’s equally delightful, weird, and quirky like his brother, but we started our diagnostic odyssey with him and his multiple disabilities very early, right from infancy. Our parenting journey has been shaped by the fact that we actually have no control over most things, and we’ve had to learn so much along the way. It’s been a journey of figuring out how to serve our children, sometimes in identical ways, sometimes in wildly different ways. For our younger son, caregiving will be a full-time and forever job. We’ve come to understand that, and now we look at caregiving as a job in addition to the parenting piece.
Ann: Wow. I can only imagine what it’s like to enter into a whole new world unexpectedly. I appreciate your openness and your heart in sharing this. One thing I love in your book is how you describe your son as “excessively handsome.”
Kelly: (laughs) Yes, and by the way, I actually write that on all the doctor’s forms when they ask for diagnoses. He has many diagnoses at this point, so I sneak in “excessively handsome” as one of them. It’s like my way of seeing who’s really reading the paperwork! When they ask for his interests, I add things like rocket science just to keep it light. It helps.
Ann: (laughs) I love that! He sounds like a great kid.
Kelly: He really is. He’s also a kid whose disabilities are visible. Some children’s disabilities aren’t immediately obvious, but with my son, you can tell. There’s no tiptoeing around it. When we’re in public, he’s loud, squiggly, and doesn’t walk or communicate like everyone else. It took us too long to own that, but now we embrace it. When we stopped worrying about what others thought, things got easier. People have come to appreciate his joy, and we get a lot more “Wow, your kid is dancing in Costco, can I join?” instead of “Oh, I’m so sorry.”
Ann: That’s beautiful. So, for parents who are just receiving a diagnosis and might be feeling overwhelmed, what’s your advice? Where should they start, and what should they expect?
Kelly: So much of my advice comes from my own experience. I had almost no personal experience with disability before having kids. The media wasn’t really providing useful representations of disability either, but when we started down the road of diagnoses, I felt like I was falling into a bottomless pit. It felt terrible, like I was never going to feel better. What could have helped me was simply being informed about disability. It’s not an inspiration story or a tragedy; it’s just math. Many people are disabled—1 in 33 kids is born with a birth defect, 1 in 6 children will be diagnosed with a developmental disability, and 1 in 4 adults is disabled. It’s out there. It’s common.
I wish that clinicians, educators, and social workers were better equipped to deliver diagnoses in a neutral, matter-of-fact way and provide families with a path forward instead of leaving them feeling hopeless. To parents who are new on this journey, I say, however you’re feeling, it’s valid. There is no “cheer up.” However you feel, that’s okay. There is a bottom to the bottomless pit, and you will hit it many times. The sooner you connect with other families, organizations, or social media accounts run by disabled people, the better. It’s important to surround yourself with people who understand and have lived experience, not just pity.
Ann: Where did you find community first?
Kelly: Honestly, I didn’t find community for a long time, and that was a huge mistake. One of my first connections was at a therapy conference when my son was just months old. I met another mom there, and I said, “Hi, can we be friends?” She’s now one of my closest friends. Finding community at therapy appointments, school, and preschool became so important. We need to ask other parents questions like, “Hey, we’re both feeding our kids with feeding tubes. Do you want to hang out?” And the answer is almost always yes.
Kelly: Finding community is key. And don’t be afraid to reach out, whether at school, therapy appointments, or other places. I literally started by Googling, which can be a disaster. But my son’s first diagnosis was cortical vision impairment, meaning his eyes are fine, but his brain isn’t processing the visual information correctly. So I went home, Googled “blind children Los Angeles,” and started crying. Whether you’re Googling “autism Dayton” or “cerebral palsy Indiana” or “rare disease Florida,” there are organizations to help. The first one I found was incredible. I called, and I was a blubbering mess. I said, “My kid’s blind. What do I do?” They transferred me to their early childhood person, who became a huge ally.
Ann: Right. And that’s what those organizations are there for, to help.
Kelly: Exactly. I think one of my favorite things that you just said was, “Will you be my friend?” That takes a lot of courage. And I have a friend who says, “Never underestimate the power of the ask.” It really applies here—just ask for connection. Everyone’s waiting on the ask.
Ann: Yes, and often it’s simply about asking, “How are you doing?” But seriously, asking, “How are you doing, for real?” Because most of us, if we’re honest, aren’t just fine. We might be doing great because something wonderful happened, or we might be struggling.
Kelly: Absolutely. That’s so true. A simple, real question can open up so much. One of my favorite things to ask is, “How are you doing on a scale of 1 to 10?” That gives people a chance to really reflect on how they’re doing and gives them permission to be more honest.
Ann: I love that. In your book, there’s a quote I really love: “Parents lose hope, they rescue hope, they regain their hope.” It’s a process of losing it, finding it, regaining it, and moving forward.
Kelly: Yes. Absolutely. I was thinking about that exact thing in one of your podcast episodes. There’s so much pressure on parents to do everything early, soon, and right away. “Earlier is better” is the message we get about everything—ourselves, our children—and especially with disability, we feel like we’re falling behind. But there’s no race. When your child is disabled, you’re not running on the same hamster wheel. And that’s okay. My son might never be on that wheel, but he’s amazing, vibrant, joyful, and the mayor of everywhere he goes.
Ann: Exactly. It’s all about observing your child and meeting them where they are. Whether it looks like a typical 14-year-old or a 14-year-old playing in the mud, it’s about embracing who they are. Let’s talk about labels. Some parents are hesitant to get a diagnosis because they don’t want their child to be labeled. What’s your perspective on that?
Kelly: I completely understand where parents are coming from, and I would never shame anyone for that. But from my experience, a diagnosis is just information, and information helps you serve your child better. My son’s autism diagnosis came quite late, after many other diagnoses, but getting that official diagnosis helped us understand him better. It didn’t change who he is, but it changed how we approach his communication, his education, and the way he interacts with the world. It helps his teachers and therapists too.
Ann: Right, and that diagnosis helps open the door to insurance coverage and services, right?
Kelly: Exactly. That’s a big deal. All of this is expensive, so if you can access insurance, whether it’s private, state, or through disability-related services, it can make a huge difference. The more we can serve our child by accessing the services they need, the better off they’ll be. A diagnosis doesn’t change who your child is, but it helps you advocate for them and ensure they get the support they deserve.
Ann: Absolutely. And I know in your book, you talk a lot about how other people treat you and your son. Let’s talk about that, and then I’d love to hear about the bingo game from your book.
Kelly: Yes! So, with any child, you run the risk of being on display every time you leave the house. When you have a visibly disabled child, it’s even more amplified. My son is loud, and he’s proud. He loves to applaud for the lettuce at the grocery store because he likes the lighting there! People see him, and that’s fine. The worst is when people pretend they don’t see him. It’s like, come on, I know you see him. We see you. It’s awkward.
Ann: (laughs) That’s so true. You’re educating people by not apologizing for your son, right?
Kelly: Yes! I used to apologize all the time, but it felt awful. I don’t want my son to grow up hearing me apologize for him being himself. Now, instead of apologizing, I say, “Yes, my son is loud in the library. Thank you for understanding.” It shifts the conversation and helps people see him differently.
Ann: That’s powerful. And if we’re teaching our children to be curious, we should acknowledge what’s happening, not avoid it.
Kelly: Absolutely. If your child stares at mine while he’s eating with his feeding tube, don’t tell them not to look. Say something like, “Oh, that kid has a medical device. How cool is that?” It’s about giving kids the language to be curious about others.
Ann: I love that. We need to advocate for families who are receiving this kind of treatment. I remember being in the grocery store one time, and a child came in screaming. People were visibly uncomfortable. I knew that child, and I told everyone, “It’s okay, that’s my friend’s child, and he has autism.” We need to stand up for these families.
Kelly: Yes, exactly! If you’re able to bring your child into the community, even when it’s challenging, do it. People need to see our kids in public, everywhere. Instead of apologizing for them, acknowledge the situation with kindness. Say, “Thank you for understanding,” and shift the conversation.
Ann: Yes, it’s a way of educating people, just by being out in the world and showing your child’s joy. I love that. Now, let’s talk about the note you give to the flight attendant on airplanes. It’s such a brilliant idea.
Kelly: Thank you! So, when my son flies, he often expresses joy by making loud, high-pitched squeals. Obviously, that can be alarming on a plane. So, I bring a printed note and give it to the flight attendants. It says something like, “We’d like to welcome all passengers, especially our young ones. One of them expresses joy by making loud squeals. If you see him after the flight, give him a high-five and tell him what a great flight it was.” It’s just a way to set expectations without apologizing.
Ann: That’s amazing. You’re acknowledging the situation while being respectful and educating everyone on the plane.
Kelly: Exactly. It helps everyone understand, and it respects my son without making apologies.
Ann: I love it. Now, let’s talk about your book. When did it come out, and what’s it about?
Kelly: The book Everything No One Tells You About Parenting a Disabled Child came out in March 2024. It’s available on Amazon, Barnes & Noble, Target, and more. The book is really the guide I needed when we started this journey. It’s full of foundational information in a conversational tone, not too clinical or academic. It’s designed to be practical, with bullet points, templates, and real-world advice. I interviewed over 40 experts, many of whom are disabled themselves. The book covers everything from insurance to IEPs to future care plans. It’s really about helping families build a journey based on real knowledge.
Ann: That sounds so useful. I could see it being a great resource for parents who are just starting this journey. It could even be a book club book for parents to walk through together.
Kelly: Yes! I love that idea. It’s a great starting point for parents who might not be ready to jump into face-to-face groups yet.
Ann: And for early childhood professionals, this book could be an excellent resource for understanding how to help families and guide conversations. Kelly, I really appreciate your work and your heart for this community. As we wrap up, what’s one word of encouragement you’d like to leave with our listeners?
Kelly: My word of encouragement is this: You are absolutely the parent that your child needs. You don’t have to know how to do everything. It will be hard, and there will be challenges. But you will figure it out because you love that child, and that love will guide you.
Ann: Thank you so much, Kelly. I’m going to put a link to your book right here for listeners to find, and they can also find you on Instagram at HelloKellyColeman and on your website, kellycoleman.com. Thank you so much for being here.
Kelly: Thank you for having me!