Parenting Children with Disabilities
Episode 47: Parenting Children with Disabilities with Kelley Coleman @hellokelleycoleman
This week Rachael and Kelley Coleman, author and mother, discuss parenting children with disabilities.
Here’s what they discuss inside this powerful episode:
Hear Kelley’s personal journey with parenting two kids: one with multiple disabilities and one with typical development
Kelley shares her story about her son’s diagnosis and how it changed her as a parent
Suggestions for parents who just received a diagnosis or are trying to receive a diagnosis for their child
Ways for parents to feel empowered to speak up for their child
Fostering communication with your child’s school team and others
Grieving the childhood you pictured for your kid
The ways your relationship with your partner can be affected by parenting a child with disabilities
How to talk to your kids about others with disabilities
All about her book: Everything No One Tells You About Parenting a Disabled Child
The importance of finding community of support and connecting with others who are in similar situations
And so much more!
Kelley is a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. Her writing and advocacy draw upon over a decade of experience accessing the necessary supports for children with disabilities to succeed, including her own child. Kelley’s book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports is available for preorder and will be released March 12th. She lives in Los Angeles with her husband, two boys, and her son’s trusty service dog.
Mentioned in this episode:
Kelley’s Book: Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports
Kelley’s website: kelleycoleman.com
Kelley’s Instagram: @hellokelleycoleman
Listen to the full episode
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Welcome to No One Told Us, the podcast that tells the truth about parenting and talks about all the stuff you wish you knew before having kids. I'm your host Rachel and today I'm speaking with Kelley Coleman. Kelley is a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. mHer writing and advocacy drew upon over a decade of experience accessing the necessary supports for children with disabilities to succeed, including her own child. Kelley's book, "Everything No One Tells You About Parenting a Disabled Child, Your Guide to the Essential Systems, Services, and Supports" is available for pre -order and will be released actually by the time this podcast comes out. It's coming out very, very soon. So if you're listening, it's already available, which is wonderful. And Kelley lives in Los Angeles with her husband, two boys, and her Suns trustee service dog. I'm just so excited to have you on the podcast. Kelley, thank you so much for joining.
Thank you for having me and for creating this community as I was going down the rabbit hole of your episodes and social media and everything. I kept thinking of like all of the ways that this journey would have been different if I had had this from the beginning because you're right, there's so much that were like, "What? What do you mean? My mood imbalances might be happening for real after I have a baby." What? No. I know. We need to talk about all the things. I know. I appreciate it.
When I saw the title of your book, I was like, "Oh my gosh, this is so perfect." Yes. Exactly what we try to do on the podcast is tell you all the stuff that you wish you had known before.
And, and yeah, I think I would love to just start with kind of hearing about your personal journey and what kind of got you into this work.
Yes. So I have two amazing kids. Sean is 12, Aaron is 10. They're the best of friends and are hilarious and wonderful and all of the things. And of course, when our first we had our first baby, and he was a, you know, quote unquote, easy baby, and we're thinking clearly because we have this figured out and we're awesome parents and then we had another baby and there's so many people are like yeah I see where this story is going because I have multiple babies too and very quickly it was such a different path and we're like oh wait we actually don't know how to do anything so let's figure this out and as we were figuring out not only do different humans have different personalities, even from infancy. We started noticing very early delays, questions with Aaron's developments, just lists of things that kept piling up.
And over the years, he has accumulated many diagnoses. He's a bit of an overachiever.
And he's now 10 and is vibrant and hilarious and all the great things, and has a yet undiagnosed genetic syndrome, and within that has been diagnosed with autism,
cerebral palsy, epilepsy, cortical vision impairment, microcephaly, he has a feeding tube, sensory processing, fine motor, gross motor, language, sensory, like all the stuff. He's like, "I'm just gonna check a lot of boxes." and it's hard. He's not hard. He's an awesome human.
But going from, I feel like I got this parenting thing down to how much paperwork do you want me to fill out? How much is this therapy going to cost? Like how do I even know what specialist I need? Much less where to find one. All of the stuff that can come with having a disabled child, disability is not inherently a negative or positive. It just is. And it is so common. I mean, you want to talk about what no one tells us and is just how common disability is. If in those baby classes, instead of saying, "Here's how to diaper your baby. Let's have lunch." If they were to say, "We're going to learn to type your baby." First, here are the statistics on childhood disability. Couple people in this room, statistically speaking, will have a child with disability. If that's you, come to us. We have resources. Now let's learn to diaper the baby.
That could change everything for how parents enter into this. I have the same story as just about everyone of coming into this from a place of total ignorance and total inadequacy and feeling like wow this must be terrible because all anybody's saying about my kid is how sorry they are and they don't know how I'm gonna do this and oh you poor thing and this is terrible.
Can you just tell me my kid has great hair because he does? Like, Right?
Yeah. Yeah. Oh my gosh, for sure. Yeah. I remember. So I was a special ed teacher for almost a decade before I started doing this. And yeah, I remember being in those meetings, those IEP meetings where we would all kind of go around and talk about strengths and weaknesses. And sometimes you would see a parent just kind of like glaze over and be like, I just can't hear anymore. They just wanted to have somebody like see their child and celebrate their child for who they are and not just beat the disability to death.
Yes. You talk about the disability all the time. Yes. I love that you talked about how the fact that your first was an easier baby made it such a different experience 'cause I would also see the flip side where it was the first child was the one who had the disability and then either the parents decided we can't handle anymore, we're any more kids or, you know, just all the different ways that the family can be made up was super, super interesting. What are, do you think, what are some of the ways other than just increased awareness from even pregnancy,
right? Pregnancy and early postpartum period. What else do you think would help to kind of lessen the burden or lessen the stigma for parents who are kind of just starting to get into this world, like maybe they're very newly diagnosed or they're trying to get a diagnosis, what do you wish that you had?
I wish someone had directed us towards a place to start. I say that whether it is a parent training and information center, which every state has, it is free, they are run almost exclusively or exclusively, I'm not sure, by parents who are also in this scenario, and it is specific to your state, and so all of the different guidelines and things, they will know. And I didn't learn until last year that every state had those, like, what? How did that take me a decade to figure out?
And I say, you know, whether it's those, whether it's my book, is the alternative to go home, Google and cry because it's literally is there like your kid has a thing bye bye you're like what just happened and so we waste all of this time and energy and eventually a lot of money just like throwing stuff up against the wall and see what seeing what sticks rather than anyone saying like here is a starting point…. Go with real information that you can actually understand so many of the resources and you know this from sitting in IEP meetings. We have ours at 8 a .m. tomorrow.
Just looking at these documents like we need a graphic designer to come in and just be like, okay. I'm gonna make this Able to be read.
I know they're ridiculous…. Try writing them Yeah, yeah. They need a better system for sure. It's like, it's not parent friendly. I at one point worked in an area where it was very low English speaking population and I was just like, how are these parents supposed to read this and understand what…. like you can provide a translator. Sure. But it's just the system is so are your kids in public school or is it a private school?
My kids are both in public school. One is in middle. The other one who's in elementary, he splits his time between a special education classroom and general education classroom. His school has a large population of kiddos with moderate to severe support needs. And so it's great that all of the teachers are used to doing inclusion, used to working with the special ed teachers, the support staff, and the kids are just used to seeing kids like mine who is visibly disabled around, so it becomes no big deal. And his also is a school where over 80 % of the families are native Spanish speakers.
And so I'm working so often with his friends' families and with the community of being certain that whatever language translation is happening, that they're fully understanding. It's state by state the requirements for translation or also timely translation. I talked to a family recently who waited over a year for a translation for their child's IEP into Spanish. And they were just waiting. And that's in California, which is known for being one of the better states for disability support and special education.
Well, and Spanish, that should be one of the easier things to translate. That should have happened within a day. I think a year is insane.
It should have happened prior to the IEP meeting.
Really? Yep. Oh my gosh.
There is a Senator working to pass - Yeah, because it's-- - And they're looking to go in.
Yes. - Yes, please. 'Cause it's so much and a lot of times I think parents feel, they either don't know that they can advocate for certain things, they don't even know what to ask for. And then I think even if they do they feel a little bit, not shy, that's not the right word, but how would you describe it? Like you just, you don't wanna be a burden, you don't wanna be a pain. I just, I found a lot of parents really not wanting to speak up to the school team.
Yes. And it's all the things. It can be language. It can be feeling intimidated. It can be like, "I'm just trying to hold in tears so they don't say a thing." And how do we foster that communication with our school team throughout the school year so that the IP meeting doesn't feel like this looming, scary thing that's just waiting to come eat you. But that it feels like a continuation of conversations that has been happening the whole school year, because they are intimidating. In our room tomorrow morning, there will literally be a dozen people from the school district. Yeah, because we have a big team and we have a very thick IEP. It's right over there.
I would love to look at it. I'm just kidding. So we're talking a lot about like, school -age kids and stuff like that, but I kind of want to go back to when you first had your second child and,
you know, you'd had this experience with having a very, you know, chill baby. And what were some of those kind of first inklings that something was wrong? Is it something that you knew right from the time he was born that he was going to have disabilities or was it kind of a slower realization?
For me, the mom gut, and I'm sure you've talked about this many times about just that intuition and that feeling. From day one in the hospital, I knew something was going on.
He was passing the tests. Everything seemed just fine. The nurses were like, "Oh, you're just hormonal. Have some ice chips." I'm like, "I don't want ice chips." No I want somebody to listen to me? And I just kept having that feeling. It was from very early ages, it was very difficult to get him to eat. Most babies wake up from naps crying because they're hungry and they want food.
He would just sleep and sleep and we would have to wake him up to eat. And while people were saying, "Oh, you're so lucky your baby sleeps so much," I was saying, "No, this is not how it's supposed to be. Something is going on. And so the too much sleeping, the very challenging time getting him to eat, when he was awake, he was just screaming and crying and inconsolable almost all of the time. And colic is a very real thing and I've had friends who have had incredibly and dramatically colicky babies. But this was different. Something was going on.
As all of this was going on, "Yeah, you're playing with your baby. You're hanging out. Babies are adorable. You're looking at them. They're looking at you." And it was very clear that he was not looking at us. His eyes always seemed glazed over, like he was never really looking at anything. And his eyeballs were kind of pulsing, pulsing, pulsing side to side. It turns out that's a thing. And it's called nystagmus. And the first specialist we took him to was when he was about two and a half months old. And the neuro ophthalmologist at our local children's hospital was shining bright lights directly into the eyes of a two and a half month old baby. And the baby was not reacting, close in his eyes, not crying. I'm like, "He can't see that light, can he?" And the doctor said, "Nope, he sure can’t."
Wow. So, we were like, "Okay, so baby's blind." And it was cortical vision impairment, cortical meaning the brain, vision impairment meaning difficulties, issues, challenges with processing visual information. And that is actually, to my surprise, a quite common issue with visual impairment. All the physical structures there were there, but his brain was not processing the information. And so the doctor was wonderful and is still on our team. He's interviewed in the book as a matter of fact. And he said, "With CVI, we don't know what the range of development will be. There can be no development. There can be excellent development and everything in between.
And I'm happy to report that a decade later, we have had this…., I hesitate to use the word magical, but we'll say magical ….experience that our doctor describes as almost unheard of. Wow. And I certainly don't want to give anyone false hope, but this is our actual story.
Our child went from bright lights right in the eyes, can't see them, to he's 10 years old, he has a tremendous amount of functional vision. If he sees a toy he wants on the shelf way over there, he will point to it, walk to it, and he is using hand-eye coordination and while his communication is complex and still developing, we can't tell the degree to which his vision has fully developed or is still a work in progress. But over the last decade, we've watched our son going from totally blind to, "Hey, look at that toy. Let's go get that."
That must be such an incredible feeling. Oh my God, I love that.
Really incredible. And also, one of the many question marks of having a kid who does have an undiagnosed genetic syndrome. We just don't know. Our two and a half month mark was your kid's blind. Our three month mark was that your kid is in the hospital because he is eating literally nothing and here comes a feeding tube and we were of course beside ourselves because we were horrified because we had never heard of a feeding tube before and it sounded terrible.
And I'm actually happy to report once you get over the bump of your own freak -outness, which I'm guessing is a word now. They're actually not a big deal. And I believe he will eat with his mouth and all the things one day. But that's just not where he is right now. So the feeding tube actually does make our lives easier in a lot of ways.
You know, we've got a lot of stuff going on, but this process of getting to know your child as who they are as a unique human is something else that no one tells you of like that's the thing that bridges between the I am just falling down a bottomless pit and I can't do this because I'm miserable and terrified every day so like yeah we're good.
Yeah, and it takes a long time in most cases but When you get to know your child as an individual, you fall in love with who they are. Not the oh, I'm so sorry. Oh you poor thing like that all goes away.
Right, I love that advice. We're gonna take a quick break and we'll be right back.
So Kelley, I would love to hear about your experience with your two boys because You know one has multiple disabilities and one is typically developing. How does that go? Is there guilt involved? Do they get along well? Is there, you know, "Favoritism, how does that all go?" Because I know a lot of parents are probably super worried about not only their disabled child, but then how that's going to impact their typically developing child. Can you talk a little bit about that?
I love this question so much because this is a thing that is on so many people's minds that we almost feel guilty talking about it because there is so much wrapped up in the sibling experience. As with any sibling relationship, who they are and what their relationship will be really depends on their unique personalities. And for us, you know, we're certainly crossing our fingers from an early age that knowing this is not going to be a typical sibling relationship, let's see how this goes. And we do our best. And fortunately- Our boys are the best of friends. We hope that will continue. We have been able to say, "Okay, we will spend one -on -one time. We will make the special time. We will create all of the things."
And our boys are—they play differently. They communicate differently. They interact with the world differently. But they share a room and they have bunk beds and Aaron who's in the bottom bunk won't get out of bed until Sean comes down in the mornings and they title.
Aw, that's the greatest. It's so cute. Isn't that the best? It's the sweetest thing. Yeah, I love it. It is so sweet and I think part of the comfort level that Sean has with Aaron, who gets a lot of attention when we're out in public because he is loud and proud and doesn't look like anybody else, is that we talk about all the disability things. We talk about the staring. We talk about the... He gets to bring his dog to the mall and nobody else does. We talk about things people might say, "How to explain to your friends if they're like, 'What's wrong with your brother. We are so open about all of the stuff and we really make sure to include the boys in the conversation.
We ask Sean how he is feeling about all of this and I address the sibling experience a bit. I mean this is books and books worth of stuff on the sibling experience But there's an expert that I interviewed who is an adult sibling of his adult disabled sister. And he talks about from his years of research and work in this area, the number one indicator of how a sibling will feel about their sibling's disability is how the parents are and how the parents feel about it and what they project.
And if you're like man this disability makes our life hard and this stinks disability is rotten. Chances are very strong that your non -disabled child will feel that way too and might feel resentment, anger that I have to you know care for a sibling who will never live independently or whatever the thing is. But if you have grace and a sense of humor and acknowledge what's hard, you don't have to pretend that it's all easy, like epilepsy is not easy in our house. But the sibling will form a relationship based on all of the things.
And for us, there are days when I see, I'm gonna cry, I see two kids holding hands, you know, climbing up to the top of the jungle gym. And I literally, I'm just like, I start to cry because my kids will never do that. And it's not even a sense of guilt because they're missing out. But it's just that like, man, this is not what we envisioned. And so many of these fun, magical childhood things just aren't on the table.
Yeah. It's almost like a loss. And I think that just reminded me of, I'm sure you've read it, the piece, A Trip to Holland or something like that. I can link it in the show notes. Yeah. About just having to kind of shift what your vision for your family was going to look like because it's going to look a little bit different.
I also love what you just brought up because I think that, like we said at the beginning, disability is a lot more common than people might realize. So many of the people listening either already know they have a child with a disability or that will come about at some point.
But a lot of listeners are not going to have a child with a disability, but they of course will be sharing classrooms, sharing public spaces, friends with, married to all of those things with somebody with with disability. It's just something that we all have to know about and be aware of.
I would love to hear what you wish other families would know about how to approach your son, how to interact with your son, what to say, what not to say. I think you know we try to be good parents and we try to teach our kids the right things to do and how to be good people And this conversation for some people can be really uncomfortable and they don't want to say the wrong thing, they don't want their kid to embarrass them by staring and things like that. So I would just love to hear what you would tell parents about talking to their kids about disabilities.
The first place that I always start with parents is saying most of us grew up at a moment in time when all we were taught was don't stare, don't look at that person. Pretend like you don't see them or their disability and just keep going. And so know that I get it, I think we should all understand that most of us are working from a place of, well, we acknowledge that that's not cool and that it doesn't feel good. So we know it's not okay. But what now?
And so I really I'm very sympathetic to people who are like, "I want to get this right, but I don't quite know what to do here because my three -year -old is staring at your kid while you're feeding him with a feeding tube." I don't even know what... What is that thing anyway? Lean into it and kind of fight against the "Don't stare" business that so many of us grew up with. I know that you can see my kid,I know you can see his disabled, like it's cool, we got that part covered. Be curious about other humans, about all other humans.
When I see kids, and sometimes adults too, adults are weird, kids are awesome, adults are really weird. So your kids are probably going to get it right more often than not. And if you're not sure, kind of follow their lead because they're probably just fine. I see kids staring at the feeding tube, for example, or the fact, you know, that we have a dog at the mall. It's fully trained registered service dog. And I give kids the language because they are showing, "I'm curious. I don't know what that is. Encourage genuine curiosity. You know, don't ever say like, what's wrong with him? Like, no, what's wrong with you, lady? Right?
Yeah, I hate that. Oh my gosh. And I love that you're coming from the special ed background. So you're like, Oh, yeah, I've seen that. When I see kids staring at the feeding tube, I say, Oh, how cool is this? Do you want to see? And partly because my son is very outgoing, very social, he's like, "Yeah, cool. You can see what he likes to do. He loves it. We always need to be mindful of our own child's safety and comfort level. If he doesn't want to be sharing that with anybody, we're not going to. But because it is with his consent and he is so social, I say, "How cool is this? Come here. Let me show you." They're like, "Cool." The parents are like, We got this. So, you know, it opens up the door to have a conversation.
And when you say how cool is that? We don't need any of the your kids a superhero. Like, no, he's not a superhero. He's not an inspiration. Like, he is a 10 year old boy who's looking in the sky for airplanes and laughing at farts. That's what a 10 year old boy does.
Yes. So he's no better. He's no worse than anybody else. But it's okay to say, you know, or to teach your children to say, "Hey, I'm really curious about you. I can tell you about me. But if you're comfortable, you know, can we have a conversation?" And, you know, teach your kids it is always to someone's comfort level. And kids like mine who have a very complex communication system…. there's some vocalizations… there's some gestures… there's pointing …there's a little bit of signing… he now has a communication device which for us is an iPad with communication program on it… and he can tell you a lot of things. Say to your child if your child like i want to talk to this weird kid but i don't know how to say it looks like he communicates differently than you do. That's cool. Let's figure this out.
And again, just approaching from a place of curiosity, if you or your kid do say the wrong thing, it's okay to say, "Man, we got that wrong. I apologize." That would be really nice to hear sometimes.
Yeah, that's simple. I love that. Yeah, and the curiosity piece is so great. I used to love, I had a couple kids with very complex different disabilities- sounds very similar to your son, actually. And we used to, you know, feed them at lunchtime and stuff. And because they were not able to self feed. And so we would always have like a crowd of kids kind of gathered around and hanging out. And these boys were so social, too. They just absolutely loved being around other kids. It was kind of fun to like in real time just teach kids kind of how to be curious about people that might look a little bit different or that might be doing things, like just kind of giving them, like you said, giving them that language of like, hey, I'm curious about that. Like why does he eat that way? Or, you know, what is, what is this iPad that he's using for? Can I say hi? Or how does he say hi? That's a great one.
Yeah, I just love, yeah, how does he say hi was always a good one that we would do because we had one student who would just use signs, we had one student actually who would just use his eye movement.
Yes, that's amazing.
And we would teach the kids when he looks this way, it means hi, when he looks this way, it means no. Yeah, we have all different little eye signals, which was really cool, and then the other kids got so into it, and they didn't see this weird kid with a disability who's doing things super strangely they just thought it was cool and they were so much more accepting than adults were…. like kids are just the best in that way so yeah. I love that advice we're going to take one more quick break and we're going to come right.
Okay, Kelley, the last thing that I'd kind of love to discuss with you, I know you go into so much in your book, which is so helpful. But for the sake of time, I think the last thing that I'd love to touch on with you because of the statistics around this is your relationship. Because so many couples really struggle after diagnosis and in those months and years that follow, taking care of a child with a disability or multiple disabilities. So what can you tell us about how it's affected your marriage and your relationship and how you've found support for that?
Mm hmm. I love talking about this because this is the thing that gets talked about after all of the other stuff. And usually when you just have no time or energy left for it. I'm very fortunate. My husband really is an equal partner in all things. And we have the great advantage that we felt like equal partners before we jumped into this. For us, it has been a strain on our relationship in terms of more than anything else, complete complete and total exhaustion.
Physical and mental and emotional. And I think couples need to have honest conversations about all of the things before they become bigger things. For example, okay, we know from everybody we've talked to, we are going to be exhausted. There will be times when there's no sleep and when our emotions are just rung out.When we have these piles of paperwork and our brains are just spinning from all of this stuff. And we're not going to feel connected to each other because we feel connected to nothing and we're trying not to fall down the bottomless pit.
I think to the extent that you are able to say…. here's what we think is coming. Have those conversations when things are in a good place. And also, when you are feeling something other than awesome, naming that out loud. That is something I learned from my husband. I would love to take credit for that, but he's like superhuman in all the ways. The phone call saying, "Hey, I know you're on the way home from work. I've had a really rough day. I'm grouchy. I'll probably snap. I have been eating chocolate peanut butter cups out of the bag all day and I haven't got a good night's sleep in three weeks. So just want to let you know what you're walking into has nothing to do with you." Then he can say, Okay, cool. When I come home, let me know if you want a hug, if you want me to go away, if you want me to pick up dinner, if you want more chocolate peanut butter cups. I'm like, "Yeah, excellent." Because I think when we are able to first, in our heads say, "Am I really upset that you didn't clean all the feeding tubes or am I upset that the IEP meeting didn't go at all how we thought it was going to go and I'm just looking to release that energy.
And every single day, just thinking about how am I feeling? Is it awesome? Great. Is it not awesome? What's that about? And trying to name it, because as humans, of course, we will have things that bump with one another. In my relationship, if I'm frustrated, 99 % of the time,
it's actually coming from me. It's not coming from something my husband said or did. And if I didn't take that moment, he is usually the one who is there, especially when the kids go to bed and I am tapped out.
Of course we should do date nights and of course we should take vacations. Wouldn't that be nice? There's all this stuff that we know we should do. In addition to all of that, we need to give ourselves the grace that there are days, weeks, months, even years sometimes where we are just treading water and try to be in the water together and say, Man, I really look forward to being out of this patch because I really want to just hang out with you and be married to you. And this is really hard when we're up stopping seizures all night or whatever the thing is.
Yeah. Oh my gosh. And I think a lot of that advice can go to any couple because having kids changes your relationship regardless of what other things you're dealing with because it just does. It's a lot, it's heavy, it's intense, and I love what you said about just kind of acknowledging it with each other, like saying, "Hey, I'm still here, I'm still in this with you. We're going to get out of this." But yeah, this is a hard moment for us right now.
How do you find a community of support? Because you can't lean on your partner for everything necessarily, and lots of, unfortunately, lots of couples who have disabled kids end up splitting up. What are some or other community things that that you can find to kind of connect with other parents who have maybe similar disabilities in their family or or even not just what have what have been some supports that you've found to be helpful.
The parents and especially the moms who kind of get their footing with this the soonest and are able to do all the things and retain their mental health are almost always the ones who have found community of parent caregivers and caregiving moms. And whether that's online or in person, the earlier you can connect, even if you feel like you don't need to, you need to for your own mental health.
You can Google Cerebral Palsy Indiana and find an organization. You can Google Autism Arizona, find an Organization. You can look for social media groups, you know Parents of disabled kids, Nevada like whatever the thing is if you don't have that community there…. You will certainly meet other parents through therapies, school, all of the things that you're doing. There are support organizations out there that are specifically geared towards families like ours, for example, we are brave together is one that has different places around the country in person meetings, virtual meetings, really connecting with other parents, even if the kids' disabilities are different.
Having that touchstone and having it be someone in addition to your partner if you have a partner so that you can let it all out to someone rather than saying the thing you don't mean to your partner can be huge.
Yeah, I bet that's so important. Before we wrap up, I would love to hear what is, and you kind of touched on it at a few points in the episode, but I'm wondering if it's related to disability or not, what is one thing that you wish someone had told you before you first became a mom?
Before I first became a mom is an interesting question because people often ask me that question of what do you wish you had been told when you first found out your kid was disabled? But if you back up all the way to before I had kids, just the path that you think you have set forth. Yeah, that's not the path. You've just made that up in your head and that's never the path.
So, know that whenever you think you're on a path, enjoy it while you can, but you're going to be on a new path real soon, and everybody has their hard thing. Yeah. Maybe you're lucky enough you haven't found your hard thing yet. Before I had kids, I had not yet found one. There's stuff that is easy, stuff that is hard, it's all fine. But the big hard thing is how do we navigate this undiagnosed genetic syndrome that brings so many support needs, medical needs, paperwork, all the stuff. And just know that there are hard things on that path. It is not the path you think you're on. And hard doesn't mean bad. Hard is just hard. And we can all do hard if we give ourselves the permission and the space to lean into the hard things and to figure it out.
I love that. Kelley, where can people find you and the book and all of the other stuff that you have going on? I'm so excited to -
Thank you.
Oh, wait. Oh, I've got it right here. My window.
There we go. There it is. I'll have that. I was like, "Oh, depending on the lighting situation, there we go." So, tell us where we can find everything.
Yes, so the book is Everything No One Tells You about Parenting a Disabled Child. It's available at all the book places, Amazon Target, your local bookseller. And my website, Kelleycoleman .com is K -E -L -L -E -Y Coleman. And it has all this social media and book stuff and all the stuff you never know you needed.
Perfect, well thank you so much. This has been such a great conversation and I'm so, so glad that parents are gonna have a resource like this, finally. So, so needed, so I really appreciate your work.
Thank you, I appreciate you and all that you're doing for all the parents.
Thank you so much, Kelley, have a good rest of your day.
You too, thanks so much, take care.
