What Parents of Disabled Children Wish That Other Parents Knew with Kelley Coleman
00:00:00 Alyssa
You're listening to Voices of Your Village, and I got to hang out with Kelley Coleman. She is the author of Everything No One Tells You About Parenting a Disabled Child. Kelley is a feature film development executive turned author and a passionate advocate for parents and caregivers and individuals with disabilities. She is the parent of two amazing boys, one of whom has multiple disabilities, and her book, Everything No One Tells You About Parenting a Disabled Child draws upon over a decade of advocacy with candor, humor, and relatability earned in her prior career of writing and developing talking animal movies. She was recently named best mom ever by her two discerning children and received a congratulatory mug. I had a blast hanging out and chatting with Kelley. There are a lot of nuances in the conversation and think that this is really key for all humans. Whether you are parenting a disabled child or not, there's so much learning for us all to do as a community about systems and support and the worth of every human on the planet. All right, folks, let's dive in.
00:01:20 Alyssa
Hey there, I'm Alyssa Blask Campbell. I'm a mom with a master's degree in early childhood education and co -creator of the Collaborative Emotion Processing Method. I'm here to walk alongside you through the messy, vulnerable parts of being humans raising other humans, with deep thoughts and actionable tips. Let's dive in together.
00:01:41 Kelley
Good morning.
00:01:43 Alyssa
Hello, Kelley. How are you?
00:01:45 Kelley
Great. How are you? Sorry, I'm eating cheese.
00:01:47 Alyssa
Good for you. Cheese is delicious.
00:01:50 Kelley
It's the best, right?
00:01:51 Alyssa
Cheese is the best. What kind of cheese ya working with?
00:01:54 Kelley
This is just some simple string cheese.
00:01:56 Alyssa
Sure.
00:01:57 Kelley
It's so great.
00:01:58 Alyssa
In our house, we call them Moni-cheese because our neighbor Monica introduced them to my child. And so they are forever Moni-cheese.
00:02:07 Kelley
I love that. Good job, Monica.
00:02:08 Alyssa
Yeah, Monica slays. It's so funny. We'll like be out in the wild and everything that he's been introduced to by somebody else just like has their name attached. And he'll say like, Can I have an Abey bar? We're like, right, because like Abel's the one who he found out about it from, and he just can't request something of anyone who doesn't know all of the like code words. So good. How are you, how you holding up over there? You're in California is that right?
00:02:38 Kelley
Yep
00:02:38 Alyssa
Yeah, rad, it's nice and probably beautiful and not Vermont-ey?
00:02:43 Kelley
It is, I hear Vermont is beautiful too, I have a good friend out there, um you know it's last week we had this like bananas like oh it's totally beautiful and sunny in the morning and by afternoon it was like you could barely even see it was raining so hard, and like I grew up in Ohio so I'm like oh I can do weather, but like this sudden like where is this coming from weather I'm like no.
00:03:09 Alyssa
And you don't pay California taxes for that.
00:03:13 Kelley
California taxes are real.
00:03:14 Alyssa
California taxes are real. We talk about like affordability culture and climate and how like you can pick one, sometimes two, you can never get three uh it's like a joke in our like circle and California, you get climate man, so to pay for not getting climate's a bummer.
00:03:38 Kelley
Yeah it's definitely uh but again we're spoiled like I grew up in Ohio like shoveling our driveway and scraping ice off--
00:03:47 Alyssa
Where in Ohio?
00:03:48 Kelley
Um just north of Columbus.
00:03:51 Alyssa
Okay, sure. Yeah, yeah, yeah. We, I grew up in Western New York. So not far from like Erie, Pennsylvania, we would go over to like Akron, Ohio for soccer tournaments and whatever. Not, not far. Rad. Nice. What brought you out to California?
00:04:08 Kelley
Um, work, I decided, because I had no connections to the entertainment industry. I was like, I'm gonna go make movies of some sort. So, um, it actually worked out and most of my career, I have been getting paid to come up with ideas for talking animal movies, which is so ridiculous, but awesome.
00:04:28 Alyssa
Totally.
00:04:29 Kelley
And, you know, parenting and disability and everything just kind of hit the fan. And so I had to step away from all of that, which was 100 % the right thing to do. And so it's been really fun of like, okay, I'm coming from this super creative background, and I'm not ever leaving the caregiving space. So like, what does that look like together? Which so that's kind of like, oh, and then there's a book and that makes sense now.
00:04:53 Alyssa
Totally. Yeah, that's rad. How old are your kids?
00:04:57 Kelley
10 and 12.
00:04:58 Alyssa
10 and 12. Cool. Okay. I have a three year old and a three month old.
00:05:05 Kelley
Oh my gosh. Congratulations.
00:05:07 Alyssa
Thanks. Yeah, just in it.
00:05:09 Kelley
Are you sleeping?
00:05:11 Alyssa
Actually, knock on wood because you're never supposed to talk about sleep. You know, that's rule um she slays.
00:05:16 Kelley
That's great.
00:05:18 Alyssa
She, yeah, mm -hmm, yeah her first stretch of sleep is like seven to nine hours.
00:05:25 Kelley
That's amazing.
00:05:27 Alyssa
Every single time it happens I'm surprised by it because I just feel like it's gonna stop at some point like always feels like a fluke and every time I'm like oh I love you so much.
00:05:36 Kelley
Yes so good
00:05:37 Alyssa
So great.
00:05:39 Kelley
Yeah it's fun, like we can laugh about this now but at the time, it was like not funny, but we feel like we cheated the system on the sleep front with our second one because he got a feeding tube when he was three months old and he had to be on a continuous feed all night. And so we're like, babies wake up because they're hungry.
00:06:00 Alyssa
Correct
00:06:01 Kelley
So as much as the feeding tube and the machine, like pain in the neck all the time and we messed it up all the time, like all the things, but we were getting sleep that other people weren't getting.
00:06:13 Alyssa
Totally.
00:06:15 Kelley
Oh, this is actually not horrible.
00:06:17 Alyssa
You know, finding those little bright spots, gettin' sleep.
00:06:22 Kelley
Exactly, Alyssa I'm like, I can do anything if I'm slept. If I haven't slept, like, good luck finding the pants.
00:06:30 Alyssa
100%. Yeah, I'm a totally different human. I sleep and I'm like, throw it at me. I've got it. Yeah, it's a game changer. And I don't sleep well during pregnancy. And so often, well, for both of my kids, the I've gotten more sleep once I'm not pregnant anymore than I did in pregnancy. And yeah, it's glorious. I don't, I'm not a human who loves being pregnant. It's not for me.
00:06:57 Kelley
Yeah, I was like, it was fine for me. It wasn't really good or bad. It was cool. Cause I'm like, ah, this is like weird and science fiction -y, but it's cool. Right?
00:07:08 Alyssa
The science is cool.
00:07:09 Kelley
Yeah, it's so cool! And I have some friends who are like, this is glorious! And then other friends who are like, I'm throwing up a hundred times a day and not sleeping and this is horrible.
00:07:19 Alyssa
Yeah, I don't sleep. I'm uncomfortable. Like, yeah, I just don't, I don't love it. I'm grateful for it, and I don't love it.
00:07:29 Kelley
Yeah, and it's like, you have babies and it's lovely, but also like, it's weird.
00:07:33 Alyssa
Totally, totally. Well, I am curious about like so many things about your book, but your entrance into this space and into being an author into the book makes 100 % sense. Your book, Everything No One Tells You About Parenting a Disabled Child. Was your, is your first child disabled or your second child?
00:07:57 Kelley
Second
00:07:58 Alyssa
Second child. Okay, can we like go back to, boom, did you know in pregnancy that you were having a disabled child or did you find out once your babe was born?
00:08:10 Kelley
So we had no idea at all that any of this was coming and we did do all of the prenatal tests and everything checked the boxes and my second pregnancy, and our kids are about a year and a half apart, so I had clear memories of my first one.
00:08:29 Alyssa
Sure.
00:08:30 Kelley
And everything was checking the exact same boxes, and so we had no reason to believe that anything was out of the ordinary. And then when Aaron, our second one, was born, I just had a feeling something was going on, and it was just the like flashing light in the head of, like, there's a thing, there's a thing, and I didn't have a name for it. I didn't even know, like, disability was, like, here's the path. But I was just, like, something's going on, and he was passing the tests, and he seemed to be doing well, and all the nurses were saying, like, oh, he's fine, you're hormonal, have some ice chips. And I'm, like, I don't want ice chips, like, I want...
00:09:14 Alyssa
To be believed.
00:09:15 Kelley
And to be believed, yeah. And for so many parents on this journey, there is an amount of gaslighting, and I think even intentional or unintentional, of just like, oh no, you're just making this up. Oh, you're not seeing all of that. And the first few months were so hard because while our son was checking the boxes, I just knew something was going on he was sleeping a ton to which people would say oh aren't you lucky your infant is sleeping and I said no this is not this is not how it's supposed to be. He is not waking up hungry and then he eats and then he's better and he's happy in the world we were having to wake our child up when, and this is when he was an infant we're having to wake him up it was so hard to get him to eat and when he was awake he was crying almost non -stop and I know colic is a thing and people like oh he's just colicky and I just felt like this is not that. And our pediatrician who has been just a champion in all of this while she is not specifically geared towards kids with disability, with disabilities, she is a human who is great at seeing what is in front of her, interacting with people and communicating. And she said to me, she said, we will never turn you away. Come to our office as often as you need to, you do not need an appointment, you can just show up. We will always listen to you. We will always hear you. We are keeping notes of everything you're saying. If something is adding up in a direction that points us down a path, you are doing the right thing by your child and we will never turn you away.
00:11:16 Alyssa
I love her.
00:11:17 Kelley
I love her too.
00:11:19 Alyssa
Should we give her a shout out? Is that a thing we can do?
00:11:22 Kelley
Dr. Sloane Sevran at Balboa Pediatrics in Encino, California.
00:11:26 Alyssa
Love.
00:11:27 Kelley
She and everyone at the practice has been so supportive even if they have said, and our son has now an, we know an undiagnosed genetic syndrome and many sub -diagnoses with that. So even if they're saying, we don't have your exact answer, but let's do this together. What does that mean? That means come in. That means talk to any of us, get a second opinion, ask us for referrals to specialists. If we don't know, we will find someone who does know who the referral is. And it is great if we can find people who, and especially professionals, educators, social workers, medical professionals who are specifically versed in disability. There are many folks who are not, but who are willing to go on this journey with you. And when I was coming into the office and saying, I don't think my baby's eating enough, and they're weighing him and they're asking the questions and they're saying, he's checking the boxes. If you need to come back tomorrow or this afternoon or whenever, we will see you then is huge. And that was everything. And when I kept saying this to our pediatrician and she said, you need to write all this down. And so I said, great. And I kept the log, I'm gonna cry. And I showed up in the office and I said, here's the log. And she just went, I'm gonna cry. At that moment, when we had like, here's our list of how much he is or is not eating. She said, I'm so glad you wrote this down. We're on a path. I'm gonna make some phone calls. I will be back. And we sat in that exam room with my baby, who was either asleep or crying the whole time.
00:13:27 Alyssa
Screaming.
00:13:28 Kelley
And my toddler, who is, like, he's just, like, he is a good human, and he didn't know what was going on, but what he knew was, you know what? This chair in the exam room is our oven, and we are gonna bake cupcakes. Look, here's my mixing bowl, and we were pretend baking cupcakes, which was the only thing that was keeping me from falling apart.
00:13:52 Alyssa
100%.
00:13:53 Kelley
Best cupcakes I've ever had, Invisible Cupcakes, it's a thing. By the way, can we start a band and call it Invisible Cupcake?
00:13:59 Alyssa
That's a sick band name.
00:14:02 Kelley
Look, we could do that.
00:14:04 Alyssa
One could, I guess, I can't, I'm tone deaf, but one could, for sure.
00:14:09 Kelley
It's a punk rock band and it's gonna be awesome. So there you go. That's the band I wanna start anyway. So she came back after a long time and said, you're being admitted to the hospital. Here is the hospital. Here are your contacts. Here is your doctor. Here is what to do. And it was a lot to hear because it was both totally overwhelming and a total relief all at the same time.
00:14:39 Alyssa
Sure.
00:14:40 Kelley
Because for months, like, and this was when he was about three months old. We had just been sitting at home and just, he was crying, I was crying, my toddler in the kitchen was, he wouldn't even come sit on the couch with us because he he would just poor kid would stand in the kitchen just yell all done, Aaron, all done because he just wanted his his brother to be okay.
00:15:05 Alyssa
Sure.
00:15:05 Kelley
And going to the hospital, again, it was it was all of the things, and there was relief because it was acknowledging like yeah, your kid is sleeping and crying all the time because he isn't getting enough food and he is malnourished. And I'm sure, you know, we're still experiencing ripple effects from that, you know, despite our very, very great efforts. And at that point we were attempting nursing and bottles and pump. Oh my gosh, the pumping was like, it was a thing. And I had the like vest and the like pumping cones and the long -
00:15:45 Alyssa
Just livin’ it.
00:15:48 Kelley
And like, still just, I can picture that sound in my head. And it's just like, whoa, that is like, it takes you back there. As I'm like making breakfast and like hook up to a machine. But the initial being thrown into it, and I know so many parents can relate of just, you both need to be on a path and you're terrified to be on a path.
00:16:15 Alyssa
Sure.
00:16:16 Kelley
Because even a decade later, we still don't know exactly what our path is. Our kiddo has since been diagnosed within the undiagnosed genetic syndrome. We've done every test science has available on that front. He's since been diagnosed with autism, cerebral palsy, epilepsy, cortical vision impairment. He has a feeding tube, microcephaly, he has gross motor, fine motor, sensory processing, cognitive, behavioral, medical needs, like, he's like, I'm just gonna check all the boxes, I'm an overachiever. And we're like, cool. And within all of that, we are very fortunate that he is a kid who is able to just show us how he needs to move through the world, and that he loves being in the world and he wakes up and you walk into the room and he sits up and he starts applauding because you walked into the room. And you know what? Some days like that, every day, that is exactly what you need is for someone to applaud who is just like, I am so happy to see you. I can barely contain my enthusiasm.
00:17:28 Alyssa
Incredible
00:17:31 Kelley
And he like, it is incredible. And there is so much that is hard. I would take away the epilepsy and like the medical all that stuff in a second if I could and We also are able to fully lean into who he is and like oh, this is what people mean when they say like we are not trying to fix our children.
00:17:55 Alyssa
Yeah.
00:17:56 Kelley
He is not a broken human who needs fixing. We just need to figure out how to step into his world and bring everybody into his world and along for the ride. And it's fun to be right sometimes, but we have found our medical professionals, we've had some educators who have gone so far above and beyond, not just because it's their job, and also not just because they think he's a cool kid, but because they see the opportunity even for themselves in, here is a kid, I have never seen anybody like him before. He is such a complex communicator. He is a learner who falls outside of the boxes of even the outliers. And I'm going to see this as an opportunity to get creative and see what we can do within the realm of what he is capable of. And he has surpassed our expectations at every turn. We just had an IEP meeting a couple of days ago, our annual meeting where we're just shaking our heads and one of our providers said, I don't know what you guys are doing at home, but the progress in communication alone that we have seen in the past year is nothing I've ever seen before. And I'm like, yes, that's right. We're doing a thing people.
00:19:27 Alyssa
Well, and it starts with, I think of my friend, Heather Avis, her work is really focused in really acknowledging that every human is worthy, right? That Aaron is worthy of an education, of supports, of services, of the ability to thrive and be himself without trying to fit into systems that are, A, so broken for so many humans, the systems are broken, not the humans, and that he is deserving just because he has, what does Heather say? Heart beating in his chest and air in his lungs. And I love that. She started the Lucky Few, Lucky Few podcast. And her work is, she has two children with Down syndrome,
00:20:18 Kelley
I also met Heather in person.
00:20:20 Alyssa
Oh, awesome. She's awesome.
00:20:21 Kelley
Four days ago.
00:20:23 Alyssa
Oh, so fun.
00:20:24 Kelley
At an event and she and her partners in the podcast are so fabulous. I was on their podcast recently as well.
00:20:31 Alyssa
Oh Rad
00:20:31 Kelley
And I've spoken with them about, and I love their community is very specific to Down syndrome and also very universal. And we have found, especially with the kid who doesn't have an overall diagnosis, so much community in the Down Syndrome community and village. And so I so appreciate. And at the event, she was talking about individuals with disability don't have to go out there and be advocates and lobby in government. Please do if you have the energy, because we need you at the front of this. But also, there is truth to my son, her children, all of our children, being a disabled person, taking up space physically and metaphorically in the world and being out there, being your total and full expression of yourself and you are stimming and dancing at the lettuce in the grocery store, cause it's colorful and the lighting situation is great. And also that is your advocacy because it can be exhausting teaching everyone every time you leave the house, but also, we are not going to tell my kid not to dance in the grocery store and at the crosswalk and like all the things. Because he is inviting people into this world that most of us have no experience with and no real world practical knowledge. And we're just like making up all this ignorant stuff in our heads, myself included, before he brought me into this world. And like, what a terrible idea that is. And if we are getting our information and opinions, by the way, opinions should be good opinions, about disability and individuals with disability from disabled people, it really lets the air out of the balloon. And it's like, oh, like, it's fine.
00:22:34 Alyssa
That is something I want to chat about as a non -disabled human, writing a book about parenting a disabled child. I'm wondering what it's looked like for you in your journey as an advocate, as a parent, and really stepping into the disability space.
00:22:54 Kelley
I love that you asked that, because this is something we need to talk about. Over 80%, I forget the exact statistic, but it's over 80 % of children are growing up in a household where someone does not share their disability. Maybe their parent is also disabled, but they do not share the disability. Many of us are non -disabled parents entering into this space of caregiving, which is a full -time job, of caregiving and the disability community by way of our children. I've had so much good fortune, both with the book, with life, to talk to disabled individuals about this exact thing and just be like, this is a mess, isn't it? Because I don't want to be the like, I'm the super mom saving the disability community. No, no, do not need saving. You know what they need? They need me to listen and to say, cool, what do you need me to do? You need me to email some senators? I'm on the case. It is messy and I love that so many people have been forthcoming in this conversation who are disabled individuals leading the disability conversation and movement of we need everybody, we need the allies, we need parents too. And Emily Ladau, who's interviewed in my book, who is an incredible advocate and voice and leader, her own book, Demystifying Disability, is brilliant because it's so, it's such a fun, understandable read and important. She talked to me about disability isn't my experience, but it gives structure to my experience. And that was such a light bulb over the head for me because I felt like, yeah, disability is structuring literally my days, whether it's like book launch day, I'm waking up and I'm blending food for the feeding tube before I am doing all the fun, blending can be fun, doing all the like party things. And my life does revolve around making sure the seizure meds are right and the diaper order comes in and the feeding tube food is ready and the like therapy appointments are happening. Like there is so much and it's really helped me talking to disabled adults and kids about their experience, about how to center my child as a disabled person in the disability conversation and also the importance of not erasing myself as a human, a parent, a caregiver, and viewing caregiving as a job in addition to parenting, and boy, there's a lot of overlap. That I am a caregiver and that is my experience that I can validate and stand in. When I first started writing this book, I thought it was a book about disability. It's a book about caregiving. It is how the heck to do this. And I couldn't talk about that without talking about the disability piece and how do we think about and confront our own bias and ableism and how we talk about it, how we feel about it, how we navigate this life without leaning heavily on the wisdom of disabled leaders and adults who have lived this experience and still say like, I'm still a person within this and I know that my kid wants to listen to the DuckTales theme song over and over and over very loudly, that is what his sensory and processing and everything needs. But also when I'm reaching my breaking point and I haven't slept and I'm like, okay, we're good on DuckTales, like it's okay to also treat him like a human and say, I know this is what your sensory system needs. You know what my sensory system needs? We need to turn down the DuckTales theme.
00:27:04 Alyssa
Sensory system needs some earplugs. Yeah, totally.
00:27:08 Kelley
And it is messy and it is hard and it is all the things, but man, the more we can listen to disabled leaders, the less it feels like a mess and the more it feels like we are doing a thing together. I will be figuring this out for forever. There's no one answer, being an ally is not a destination that you arrive at and you get a medal. Wouldn't that be nice?
00:27:36 Alyssa
Check. I've done allyship. Yeah.
00:27:40 Kelley
Exactly.
00:27:42 Alyssa
I think one thing I'm curious about from your story and from the caregiving perspective is along the line of your journey, like at what point, you know, I'm listening to your first three months broken down and I'm sitting here with a three -month -old and thinking about like what does that look like work -wise what does that look like logistically when you're parenting a toddler and what wisdom from your experience you could share with humans who are entering into this who are parenting a disabled child and are trying to figure out like what does this look like for me in everyday life, from the career side, with the addition of therapies and just a shift in mental load that maybe from child one to child two, you experience. And I think with every kid, there's gonna be a shift in mental, my first never took a bottle, right? Like there were certain mental load things of like, okay, I can do this podcast interview to nurse him right before, and then I can do it. And they have to pause it during it, right? like there's always logistics with every human when we're in a parenting and caregiving role, but I'm wondering what that shift looked like for you entering into being a parent of a disabled child.
00:29:04 Kelley
Yes, that shift for me was monumental and a decade later I feel like I'm still making sense of it and figuring it all out. If you are at whatever point in your journey, and especially those of us at the beginning of the journey, and you're just like a mess, and you're like, I don't know the last time I showered. I am like, there was a lot of sitting on the kitchen floor, eating Nutella out of the jar.
00:29:30 Alyssa
Oh, hell yeah.
00:29:31 Kelley
Maybe there was a spoon, maybe not a spoon. Like, I didn't -
00:29:35 Alyssa
Spoon optional.
00:29:37 Kelley
Totally optional. And I'm like, that's where we are. Um, not just today, but for months. And the first thing I always tell people is don't tell yourself, just cheer up, just have a different mindset. No, this is real and this is hard and caregiving is a job. Most of us are thrown into this with total surprise, no training, no real working knowledge of disability. It is full time, it is forever. I had to walk away from a career that I had built and was at the most exciting point it had ever been. And I wholeheartedly, without looking back, walked away very quickly. I know there are families who are not able to do that, and they figure out how to navigate with supports, childcare, extra hands. We were very fortunate that we were able to, you know, pay the rent, buy the groceries on my husband's salary so that I could walk away. And I walked away from work. I walked away from seeing friends for a long time, returning phone calls. And oftentimes when people would say, what can I do? My answer would be, not quite sure, but what I do know for sure is when I don't return your phone calls, emails, texts, whatever, don't take offense.
00:31:16 Alyssa
Yeah. It's not about you.
00:31:18 Kelley
This is not about you. Because it is another thing for me to do. And protect your boundaries, your time, your space. Shower when you can. Eat when you can. Even if it's just that Nutella on the floor and everybody's saying, I'm worried about you. You should take a yoga class, which I got a lot.
00:31:37 Alyssa
Oh gosh
00:31:38 Kelley
I'm worried about me too. And I do not want to like be in a room with a bunch of bendy 20 somethings and just crying. And then be like, cool, I'm going to champagne brunch after this. Like, no, like my world.
00:31:50 Alyssa
This is my nightmare. Yeah.
00:31:52 Kelley
My nightmare, thank you. And just wherever you are in this, validate it. Know that whatever you are feeling and all of the overwhelming and the hard, and I was just a mess for years. Start with validating that. The original title of this book was the one thing that nobody told me that I really needed to hear, which was "you will feel better".
00:32:18 Alyssa
Yeah, it's all temporary. The feelings part is all temporary. Just in life, period.
00:32:26 Kelley
Yeah!
00:32:28 Alyssa
Like, full stop. Feelings are temporary.
00:32:30 Kelley
Yes! And finally, even the, like, amazing, I got this feelings, like, cool, hang on to that, but then you're gonna, like, have a thing and it's...
00:32:39 Alyssa
Correct. Yeah, soak it up and, uh, know it's gonna leave.
00:32:42 Kelley
Yes! Well, and I love on your podcast that you talk to so many people who are having these high -level conversations in super real, conversational, understandable ways, and I know you have talked about on your podcast before, you know, with educators, not just starting from the place of the students and what they need, but also from looking at yourself as an educator, and what do you need?
00:33:07 Alyssa
Yeah, yeah, educators, parents, caregivers.
00:33:11 Kelley
Yeah.
00:33:11 Alyssa
And sometimes what you need is Nutella on the floor and allowing that to be okay, right? That like, I think one of the, I think challenges maybe is, is that the word I want, is this idea of like thriving all the time. It's like, you're not going to thrive in life all the time and that's okay. There are days, there are moments, there are seasons where we're like, I'm just going to be treading water. You know, I'm going to be treading water and it won't be like this forever. And sometimes it's the trip in the car where your child's screaming and your nervous system is pretty sure you're being attacked by a bear. And sometimes it's a full season of life where you're like I just need to stay afloat and I love that that's your big message here because it allows us to strip away texting someone back or going to the yoga class or doing all these like shoulds and really just see like what do I really need to do today? I need to eat something. I need to go to the bathroom. I need to drink water. Is there any other actual need that I have to stay afloat and do these other things that need my attention today?
00:34:26 Kelley
Yes, and I've learned the phrase way too late, but I love, and I wish I even remembered, I read this on, you know, some internet meme, some, I don't know. That's not my priority right now.
00:34:38 Alyssa
Love.
00:34:39 Kelley
Such a great answer to like, oh, I've seen you put on some weight since, yes, yes I have. That's not my priority right now. Ooh, it's been a minute since you've gotten your hair done. Yes, that's not my priority right now. And addressing exactly what you said, what are the actual needs here? And addressing those as a foundational piece. You know, my book is all about like setting up systems that work for you to do all of the paperwork and the planning and all of this boring stuff. Like you might never love calling your insurance company.
00:35:18 Alyssa
No, not your favorite task?
00:35:19 Kelley
You have to do it. So how do you make, how do you like do all of this in a way that works better for you? And all of the boring stuff of like, you know what, I need to like go pee more often so I don't get a UTI, which has happened to me before. Cause I'm so like, I'm doing the thing, like
00:35:39 Alyssa
Yeah
00:35:39 Kelley
We need to foundationally, especially when we have a kid with extensive support needs or even smaller support needs that we're figuring out of, what is that foundation that I can set for myself so that I want to and can create the space for the returning a phone call, going to a yoga to a class, eating a salad, like sometimes we really need to take a step back and self -care can be checking the things off of the to -do list so it doesn't feel like this cloud hovering over you all the time. And there's something I find actually shaming about all the people who are like, you can do everything, I figured it all out. Like, no, that's awesome for you in your internet life.
00:36:31 Alyssa
But I know that behind that curtain, that's not what's happening. I had a friend one time in a hard season of life for me. She did two things that like have stuck with me. One, she texted me and said, hey, I'm going to drop over food later. That's food that you won't cook for yourself. And I was just like, Oh, thank you. Like, I didn't have to reach out now. She wasn't like, Hey, what can I do? She was just like, I know you, Alyssa, who hates to be in a kitchen when you are on your best of days. And so I'm going to drop off nourishing food that you will not cook for yourself. So it's just there for you. So helpful. Two, she said, at any point that you think of something that's on your to do list, I'm, she sent over a shared note on our phone, and she said, just put it on there. And every once in a while, I'd look at it and like things that are just checked off, like she had snagged stuff and dropped it at Goodwill, or she, she just was like, as things come into your brain, just drop them in there. And some things were things she could do and some things were things she couldn't, but it was such a gift. I didn't have to ask her, hey, can you run this to Goodwill? It was just like, in my running thoughts, huge.
00:37:42 Kelley
That is incredible. And thank you to your friend, because I'm going to suggest that to many people now.
00:37:48 Alyssa
So good. Right.
00:37:49 Kelley
And there are things that will be on your shoulders that you can't do. But a friend recently told me that a friend of hers showed up and said, you said your medical supply order came today. I'm here to unpack that medical supply order. Like in our house, it's boxes.
00:38:07 Alyssa
Yeah.
00:38:07 Kelley
And it brought me to tears when I'm like, somebody unpacked your boxes.
00:38:12 Alyssa
Yeah.
00:38:13 Kelley
Like,
00:38:14 Alyssa
And it sounds so simple, right? But like those tasks add up when you're like, I don't, I'm not even peeing as much as my body should be peeing. And unpacking the box feels like such a huge task at that moment. Yeah, no, I love this. And it like strips back to like, what are the basics? And then this is something I wanna dive into here with you is like, what does it look like to, there's so much executive functioning that has to go into creating a system of support. And when we're in these times where things feel really hard, accessing that executive functioning is so hard, which is why your book is so key of like, hey, I'm gonna help you access the executive functioning part. Here's what you really need for systems and services and supports. Here's how to guide you through this. Where do you start with that?
00:39:06 Kelley
You start with the Nutella on the kitchen floor.
00:39:09 Alyssa
Love.
00:39:09 Kelley
When it runs out, get your friend to get you more. I need to get Nutella to like sponsor my life, right?
00:39:16 Alyssa
100%, you should be sponsored by Nutella.
00:39:18 Kelley
That's exactly, like I'm in Trader Joe's and I'm like, yes, that's what we need. If you're feeling overwhelmed by the systems and figuring all this out, yes, because they are overwhelming. And the fact that your child's livelihood and progress and development could depend on your ability to navigate this stuff, talk about a load, like, whoa. Every single parent in this situation, we're literally reinventing the exact same wheels. And then you find out these people who are like, oh, you already knew how to do this? Oh, cool, I've just spent years Googling. And my book isn't like, here's the solution that works for everybody. It's the, my executive functioning is that I think in bullet points. So that's real helpful. And many people don't. And when you're under slept, when you're overloaded, like executive functioning goes out the window and there's nobody training you how to be a caregiver. And so all these templates that had been sitting on my computer and checklists and everything for a decade, I was like, let's put that into a book instead of just emailing it when somebody asks me for the email. It's all about how do we ask the questions? What are even the questions we need to ask?
00:40:37 Alyssa
That's huge. What are the questions we need to ask?
00:40:40 Kelley
Yeah, nobody knows how to like create a future care plan for a child who will or may never be independent. Like, what? That's not a thing we learn in the baby class, but it should be. It's like all of this stuff that takes forever to figure out. And the book is like, here are the checklists and the bullet points to create a system that works for you. The system that works for me is probably not the system that's gonna 100 % work for you. But how do you look at, here are some things that can work for me and take them and manage them in the smallest possible chunks. Sometimes it is just making that list of, oh, here are the insurance claims that I need to file and what? And then there's a list in the book of like, oh, here's how you do that. Everything is different in terms of services and insurance from state to state, from county to county. I live in a massive county that even depending on what street you're on, it's different.
00:41:44 Alyssa
So annoying.
00:41:46 Kelley
It's so annoying. There, even within the same federal guidelines, it is just, it is the wild west out there. But, you know, here's how to figure out what is available to you and how to access that in a way that makes it sustainable. For me, being a full -time caregiver, like this is not just a season, this is a forever. And when our hard thing, and my kids are awesome. I could talk about them all day, a lot of this like caregiving stuff is really hard. When your hard season isn't just a season, it's a forever, you need to take it in small chunks to build these systems that make it sustainable. Otherwise, like you're just in a puddle on the floor for years and maybe and sometimes that's where you need to be. And other times you're able to see through the fog and say, I actually want something more than that for myself and my family. And just putting all these pieces into place is what makes that possible.
00:42:55 Alyssa
And I think that that's huge, the mindset shift. We are so good at future jumping, like planning, jumping ahead. What's this gonna look? What's this stage gonna look like? How am I gonna survive to this stage? And the ability to say like, where am I right now? What does it look like to survive right now? And for that to be enough and to start to build that awareness and notice when we are future planning, when we are jumping ahead and trying to imagine what are these things gonna look like? What's that gonna look like? And we're in the unknown. And for myself in hard seasons in life or as I've navigated hard things, one thing that has been so helpful is when I get on the other side and then I'm in a hard, a different hard space, being able to say like, oh, I've survived 100 % of the hard things before this. Right, like I have figured out 100 % of the hard things and I know that I can do that. I know that I can survive this. And at the very beginning of a journey, you don't know that yet, right? There's a part of us that is like, can you? Are you gonna?
00:44:07 Kelley
Yes.
00:44:08 Alyssa
And as you survive more and more, there's almost like proof. Like, okay, I can do this. I can, I have filed an insurance claim before. I've been under a mountain of insurance claims and I have figured out how to file them before I can do this again. It's not fun. It's not my favorite task. And I know I can do like for the like parent caregiver, just perspective of the hard. I think as you have more kind of just time and you've tackled new things. And like you said, like it's not in the baby class of like, how do you file the insurance claims? What medical supplies will you need? How do you create the care plan? And as you do more and more of it, you learn more. It makes sense that when everything feels new it can feel so consuming.
00:44:56 Kelley
Yes, consuming is a great word. And I'm very fortunate to have a supportive husband who is a partner in all of this. And in the hardest things, now that we've been at this for a while, we can look at each other and say, is this the hardest thing we've ever done? Nope, not even close. Hopefully we're done with our hardest things because they're hard, but it puts everything into perspective. Caregivers are not complainers. They keep everything in perspective very nicely.
00:45:27 Alyssa
Sure. And just to make it clear, the hard isn't the child. It's not the person you're taking care of. The hard are the systems that aren't set up for success that we're navigating to figure out, like, how do you file the insurance claim? The fact that things are different from this street to that street to this county to this state, it's the systems that are hard. It's the lack of support that's hard. It's the lack of understanding and education that's hard. It's not the human that's hard.
00:45:55 Kelley
No. Thank you so much for saying that. And that, again, is something that experts were bringing up as I was talking in my book about we need to acknowledge what is hard. And it's okay to say to my kids, you know, I'm kind of grouchy today because I am preparing for our annual social services meeting and like all of this stuff is a lot of stuff so that we can name what is the hard so that our children know the hard is not them. I want a non -disabled child to grow up but feeling like he doesn't have to be perfect. He can make mistakes, he can take up space or need alone time or like whatever he needs because him as a human is not hard. My child who is disabled, you know what? Standing for an hour in our driveway and waiting for airplanes to go overhead and cheering for each one, like not the path we expect it to be on, but also not hard and also like really fun. You are not hard. The fact that you are my kid and you are disabled I'm never thinking like man oh this is a drag. I'm thinking like you're awesome and I'm able to separate the job of caregiving and the hard into its own bucket because I want him to be proud of all of the things that he is and know that we as a family are here for all of the parts of who he is and you know we're gonna we're gonna dance at the lettuce in the grocery store along with you because that is leaning into all of you.
00:47:35 Alyssa
Totally and that we will also lean into the hard parts of trying to create new systems that are supportive of all of you in all of your needs and see your needs as worthy and valuable. That's the work, right? Like it's the re-creation of systems that weren't designed for, honestly, a lot of humans walkin' the planet, and, that are on the planet. And I just want to make that clarification. When you look ahead, right? When you do future plan now, and you jump ahead to like, what's gonna come in this season or that season? What is your internal monologue? What comes up for you now that you're at this part of the journey?
00:48:24 Kelley
I love that you added now that you're at this part of the journey. Because looking into the future, you're right, it's something we all do. And for so many years, I literally, I could only think about the end of the day, because the idea of, I literally don't know a decade or more from now, if I'm going to be changing diapers, or if I'm going to be sending my kid to college, in an adaptive and supportive and all the things place. There is so much unknown in our lives. And for years, I couldn't do it, and creating a future care plan has been so important because, by the way, we should all have a plan for if we fall into a wood chipper. Like, statistically speaking, we all have a 100 % chance of dying, so it shouldn't be awkward to talk about that.
00:49:17 Alyssa
Sure.
00:49:17 Kelley
Like, it shouldn't happen. When we have children, we need a plan in place. When we have children who are not yet able to fully communicate all of their needs, support needs, specialists, all of the things. We need to have it all written down. For us, having a vision statement for our son has really helped to kind of have grounding in that and the simplicity of focusing on who he is so that everyone, our IEP team, our doctors, our social service folks, our, you know, successor guardians, which means the people that get our kids if we die when they still need support, all the things. And, you know, the simplicity of my son being fully included and participating in the community to the extent that he is interested, that's important to him. He will be able to communicate with familiar and unfamiliar people, Like, that gives us a framework. So all his gestures and sounds that I understand, but he does, that doesn't achieve the future plan. If he gets lost in IKEA, he needs to be able to communicate so that he can get to a person and safety and all of that. And that has shaped our communication journey. You know, looking at very big picture that he will graduate from high school and pursue interests, whether that is college, whether that is employment, whether that is community service, in whatever form that takes. Really viewing him as a contributing member of the community is the thing that drives everything. And so when, and it happens all the time, people are selling him short, telling us he's incapable of this, putting ceiling on things that he's blown through so many ceilings, that we're able to lean on the, like he already is a contributing member of the community and he will lean into that even more as he grows and develops. Like he's 10, we're not putting a lot of pressure on him. But the looking into the future has become less scary, largely because we've spent time around actual disabled people. And we're like, you're happy and contributing and awesome. And like, oh, it's actually not scary.
00:51:42 Alyssa
Yeah, the unknown is far scarier often than the known. Yeah, yeah. And I think that so much of our lives are segregated and that our communities are homogenous. And when we look around and you're like, oh yeah, how many people in our community are disabled, at least with a disability that we can see? And when there aren't a lot, or maybe none, then you're in this space of what is this? What does this look like? And I love that, that like in community, you have found comfort, it sounds like, and felt safety, and love the like big picture I want my child to be able to pursue interests. And opening up, what does that mean? What does that look like? And that there's room for, I was just interviewing somebody about the importance of play and we were talking about imagination and creativity and how crucial they are for development and for cognition. And that so many of us fall into a system and when we look at school systems that are limiting this and then as we get older we have less and less of the like imagination creativity piece where it's like, all right, what am I supposed to do next? Right? Like going to school and then I graduate and then maybe I'm supposed to go to college if I'm in a certain family, or I'm supposed to go into this trade, or I'm supposed to take over this business, or I'm supposed to get married, I'm supposed to have kids. And the ability to step back and say like, we're going to follow the interest. And that's what feels right. I think is a beautiful gift. I wish we could all give ourselves and our kids, all of our kids.
00:53:31 Kelley
And I think our journey with our younger son, Aaron, has absolutely shaped--
00:53:36 Alyssa
Sure.
00:53:36 Kelley
--shoulds with our older son, who is not disabled and is very creative and unique and all of the things and really leaning into the creativity and who he is as a human. He is academically very successful and enjoys the academics and the school, but he is most passionate about all of the creative things and the music.
00:54:02 Alyssa
And they often go hand in hand. It's rare that we see academically successful kids who don't tap into creativity and play.
00:54:10 Kelley
Yes, and play looks different for our kids. And how are we really fostering what it looks like for each of them? And also we have to really wrap our brains around what does play together look like?
00:54:28 Alyssa
Sure.
00:54:30 Kelley
Some kids are not interested in playing with others and their play is an independent thing. And yes, that is valid and right and necessary and cool. Our kids are very social and adore each other and climb all over each other. But their play looks different and there is an amount of creativity and cognitive labor that goes into, like, I want my kids to be together playing, but one wants to watch airplanes in the driveway for the hour. The other one wants to build the set from Indiana Jones in Lego, which is happening in our house right now. Which to me is like, look, here's a bar! And I'm like, oh, yep, that's a bar. Awesome.
00:55:19 Alyssa
Hilarious.
00:55:20 Kelley
-- because we're encouraging you to build that bar. But that's a great scene in Indiana Jones. They're not going be building movie sets out of Lego together anytime by the way the plural of Lego is Lego...
00:55:30 Alyssa
I know I hate it. I hate it.. at least.. it's so hard. I'm not sure that I'm going to do it yet. I'm not on board yet. I know it's the right thing to do Kelley it's a hard one for me
00:55:45 Kelley
It is a hard one, by the way speaking of all the shoulds we know we should say Lego instead of Legos, but eh.
00:55:53 Alyssa
Meh. Maslow's hierarchy of needs. Not up there for me. I love that acknowledgement though, that like figuring out what does that play togetherness look like? And frankly, that just like every human, I have two very different humans already at three months and three years old, that like my three -year -old is so my husband, who would love to have one, maybe one, maybe none, friends around and like he can get engrossed in his own play, he loves it, he's super creative, but is a sensory sensitive human. And so when there's a lot of people around, it's actually harder for him to engage in play. It's overwhelming for his nervous system. My daughter loves the hang. Like she thrives in a social situation already at three months, just so different than he was and is. And their play's going to look different. And so figuring out what does it look like to bring them together? And neither of them are disabled. And I think that's something that just when you have multiple kids, it's a real thing. And then you add on the layer of like, what are we looking at when there's a physical disability or cognitive disability? And then how do we bring that into marrying play? But what I like about what you were saying is that it's not a oh, yeah, so they just can't, it's we're gonna figure out how to foster this so that they can be in relationship in this way.
00:57:23 Kelley
Yes, and for us we have learned that it's so much starts and is led by our children's communication. They're very different. What, our older son started talking at 10 months old. We're like, whoa, the bald baby is talking. This is it's really weird, right? And our younger one is still working on his communication system, which includes a communication program on his iPad, which is amazing. But when they're communicating what their interests are, what they want to play and do, listening to that and acknowledging that with both of them is such a big part of the exercise. Because, you know, I love your book title, Tiny Humans, Big Emotions, like a lot of the big emotions can be taken into play when we show our children over and over and over, you are communicating. Doesn't mean they always get what they want.
00:58:22 Alyssa
Totally.
00:58:23 Kelley
It means you are communicating. I am validating your communication. I am not telling you you are wrong for feeling a certain way. I'm saying, tell me more. And when my kid is saying like, I want to just bounce a ball in the driveway for a long time. That is also addressing his emotions because he is registering I communicated go-ball-driveway, and just validating his communication and when he says that and I'm like dude I need to make dinner and I can say first, kitchen-dinner, then ball-driveway. He understands that? And even if the answer is like, nope, we're not doing that right now,
00:59:12 Alyssa
Feels seen.
00:59:13 Kelley
Feels heard, and he feels seen. And he feels like he wants to continue to communicate with me.
00:59:19 Alyssa
He feels connected and safe.
00:59:21 Kelley
Yeah, exactly. And creating that and fostering that connection and safety and validation keeps our kids coming back and saying, play with me. And--
00:59:34 Alyssa
It keeps us in relationship.
00:59:37 Kelley
Yes. And our family has kids who will very soon be teenagers. That is on our minds so much of, we want you to want to be in relationship with us. And the relationship of course will change and will evolve and all the things. And so right now our ulterior motive of everything is we always want you to come to us and talk to us and feel connected and feel safe. And even if I ask you how your day was, and you say, "Meh", I want you to know that like I'm here and to feel connected in that.
01:00:15 Alyssa
I have meh days sometimes too, right? And like being able to just validate that. I have meh days sometimes too. And sometimes I really don't want to talk about it. If you want to, I'm here. Like that, just allowing, yeah. It's so true. Having our kids feel seen and valued in our family. I was listening to a podcast episode the other day with Patton Oswalt was sharing that his daughter, they have a rule in the car. What they do is she can listen to her music, but she can't do it with headphones on. So it's got to come to the stereo. And he was like, there's no shame in what she wants to listen to. We all join in. In his perspective, he was like, I've been exposed to so much cool new music that I wouldn't have been exposed to without her. And we get to share this and what I heard was like and she feels valued here and worthy and like oh I get to share what I'm interested in and you're interested in what I'm interested in. And that's so huge for just like adding value and worth and to all of our humans to all of our kids. Kelley I could this five-ever with you. This is rad.
01:01:28 Kelley
That's the name of our other band is Five-Ever.
01:01:34 Alyssa
Your book, Everything No One Tells You About Parenting a Disabled Child is available. Go snag it, folks, because also, if you are not a parent of a disabled child, there's so much richness in here on what it looks like for you to be an ally and an advocate for disabled children, for folks in your community who have disabled children, and being able to show up in ways that right now you aren't being asked to do. I love this. Kelley, thank you so much for writing it, for sharing your journey.
01:02:09 Kelley
Thank you, and thank you for this community you've created where everything and your conversations feel so accessible and like we can do this as actual people who have hard things and easy things and all the stuff. So I appreciate and I feel validated and connected because of your community. So thank you.
01:02:31 Alyssa
Thank you. We got some rad villagers here.
(Music)
01:02:38 Alyssa
All right. Yeah, Kelley, it was a fun conversation for me because I feel like it's something that for me is an area of growth that I was like, I got a lot to learn here.
01:02:57 Rachel
Yeah, totally. I felt the same. And I also read her book, which was rad. And I think like what I came away from her interview thinking is like, how do we work toward a world where kids are not internalizing or perpetuating the idea that one kind of body or mind is better than another?
01:03:27 Alyssa
For sure. and that it's like this is the goal, or the I think of this too when we're talking about like neurodiversity and neurodiverse like affirming practices and schools, etc. And how so much of the world is set up for neurotypical humans and this idea that like, yeah, we can also welcome these humans and but with the undertone sometimes of like, but this is what we're looking for, right? And then it's like this othering.
01:04:03 Rachel
Totally, where we're not recognizing it's a failure of the system. I think that's where we miss the mark.
01:04:12 Alyssa
Totally, totally. And I left it just, yeah, thinking about like, how do I help Sage and Mila be allies and advocates as they're growing up too, to be able to notice when things are only designed for bodies like theirs or for brains like theirs, et cetera. And the other day we were just like putting on clothes and Sage said something about his two legs. And he said, some people have two legs, some people have one leg and some people have no legs. And it wasn't like a most people have this and some people have the way he said it, I was like, Oh, that's rad. Like that that for him is just how he's learned this, that there are different bodies. And that there isn't like this is the norm. And then also there are some people like this.
01:05:10 Rachel
Right, which I think is, you know, the underlying tone in our society. And we don't have enough and and the systems that we do have are not good enough and there's not enough of them, you know, and it's like I had a conversation with my kids once where like we were in a building and it wasn't accessible and we talked about how like if somebody who is in a wheelchair needs to get into this building like that's a problem and the problem isn't the wheelchair, it's the building.
01:05:47 Alyssa
Yeah, it reminds me of the Everyone Belongs book.
01:05:52 Rachel
Yeah.
01:05:52 Alyssa
And I mean, I obviously have shared about that so many times, but that she says in there, it's the space that's the problem. It's not you.
01:06:03 Rachel
Yeah. And it's so key for our kids to, for us to model that ideology and for them to be exposed of that ideology because it's so deeply ingrained in many parts of our society and culture to "other" disabled humans.
01:06:23 Alyssa
For sure. For sure. And this is something that Heather Avis, the author of Everyone Belongs, and she's written a handful of kids' books. She started The Lucky Few. She parents two children who have down syndrome and I've learned so much from her and she challenged me on something last year. I got to meet her in real life and connected and we went out to dinner and I was saying how essentially like I wonder how it would shift perception or narratives and acceptance for folks to understand what humans can do and not just what they can't do. And to know like, oh, this human has Down syndrome and they can do X, Y, and Z. There was actually a recent ad that was like this, that like went viral. And she was like, sure, and, that's still ableist. It's still from the perspective of like what you're able to do and that you're only worthy if you're able to do these things. And I was like, truth. And like, I had to sit with that and I ended up circling back to her. We danced a little bit at dinner and then I circled back like, oh, maybe a week or so later and just reached out and texted her. And I was like, thank you for challenging me on this. Like I've been sitting with it and thinking about like how my ableism is showing up here and what narratives I have and what work I need to do around this. But she's right. Like I was still... coming at it from such an ableist perspective of like, well, maybe if people understood what this person could do and not just what they can't do, it would shift inclusivity and understanding, et cetera. And how ableist that perspective is.
01:08:24 Rachel
Sure, yeah. I mean, like we said in the beginning of this, this is definitely an area of growth for me and listening to Kelley, it was like, wow, I still have so much to learn and my perspective is still so limited. And I love that, that reminder of even when we think that we are trying to move in the right direction, those deeply ingrained beliefs are still often ableist. And yeah, like how rad of her to take the time to like dance with you. And that's like her entire life. Right. That's awesome. You guys were able to have that conversation.
01:08:58 Alyssa
And we were able to do so in a way that, you know, I feel like we could do so respectfully with each other. And afterwards, I felt guilty because I'm like, oh, man, she is an advocate every time. She wakes up and like, this is what she has to do. And that I was like, ugh I added to it. You know? Like I felt guilt there. Yeah, just sitting with all the parts of it. I also left the Kelley conversation just like oof, our systems are so screwed up in so many ways, in the amount of capacity and energy that has to go into being an advocate, whether it's on the phone with insurance companies, or, you know, just like all the things that go into being an ally or an advocate to parent a child with disabilities and how our systems make that just ever so challenging. From the medical systems to school systems to yeah, can they enter this building? Can they go to this concert? Do they have access?
01:10:08 Rachel
Yeah, it's like the parenting mental load on steroids.
01:10:11 Alyssa
Correct.
01:10:11 Rachel
And I think something that's really valuable about her book is she breaks this down like step by step because there's so much executive functioning needed to figure out how to support disabled humans because our systems are such a failure. And she does an incredible job of making that really accessible in her book.
01:10:33 Alyssa
Yeah, for sure. And I was thinking actually about, uh there is an armchair expert episode where Monica was saying something in the fact check with Dax about like, oh, the greatest commodity is time. And he was like, yeah, if you're rich, like if you're wealthy, the greatest commodity is time. If you're not, it's money. That like you need to be able to put food on the table or whatever. And I was thinking about that with this, of like, the idea, I think there's so much messaging in the parenting space and just in life about like ways to better yourself and do all these things for your nervous system and take care of yourself and nurture your relationship and move your body and show up in these ways with your kids, et cetera. And when you add a base layer of fighting systems all day long, those are not attainable. And we talked about that in this episode of like, yeah, whatever you're going to be sometimes you're eating Nutella out of the jar on the kitchen floor and like, cheers, right? Like, because your energy and capacity is going to so many other things. And it's finite.
01:11:49 Rachel
It is finite. And I think like, there's a huge amount of privilege that goes into being able to focus your mental energy on like, being respectful to your children, because when you are on the phone with an insurance company for hours fighting over something that probably got coded wrong by somebody in an office who's not returning your call, right? There goes all your capacity. There goes all your mental energy to show up the way you want to with your children.
01:12:16 Alyssa
Yep. Exactly. Exactly. And I was just having this conversation with Gabby, actually, we were chatting about like our childhoods and ways that our parents showed up or we felt like didn't show up for us and how their perspectives were different that like for my mom, for her, showing up as a parent was making sure we had food to eat and a roof over her head, etc, right, like grew up in a low income community. And those weren't just givens that you are going to have food eat. Like we were clipping coupons from the paper. I, oh my gosh, I can like picture her like little coupon container that had all of them in there and that was how she showed up for it so much of her mental load and energy went into do we have a roof over our head can we pay enough bills this month to keep a roof over the head, to keep the heat on, to provide groceries and meet those needs. And so, yeah, she wasn't then like, I have a lot of bandwidth to then deal with your hard emotions, Alyssa. And that makes total sense now in retrospect. So when we're looking at like parenting a disabled child, I have so much compassion after this interview with Kelley for parents of like, yeah, you're probably gonna snap. You might not have this full bandwidth, because you have been fighting for your child, fighting these systems from the minute they came.
01:13:59 Rachel
And I think like also just shout out to her because she's fighting the system. She's raising this kid in this incredible way while so many things are stacked against them. And then she's like, you know what? I'm gonna make this easier for other caregivers. I'm gonna write a book.
01:14:14 Alyssa
Yeah.
01:14:15 Rachel
Like that's a huge undertaking.
01:14:17 Alyssa
Yeah, huge, huge and necessary. And so that we can hopefully start to see systems changes. I mean, the fact that there has to be a book on how to navigate these systems is batshit. And hopefully can continue to call out these systems to show where we need to see systems change. I'm excited to hear from more parents of disabled children on like what their challenges have been that maybe weren't mentioned or maybe aren't featured in the book and ways that we can continue to be allies. I think so often what happens in marginalized communities is that the folks who are marginalized or who are being hurt by a system are the only ones fighting. And Zach and I have talked about this in terms of equal pay for women. If you're a dude in the workspace, it's also your job to advocate for women and not just women's job to be like, hi, I would like to be paid equally. And that we need men to be advocating for this too. And so I think about this as well. I hope that humans read this book who aren't just parenting disabled children, but that can be allies with more capacity.
01:15:37 Rachel
Yeah, totally.
01:15:39 Alyssa
And to be able to ask those questions. Actually, in my interview with Heather Avis, we talked about what are some questions that you can ask of your child's school when you go in that can challenge those systems if you don't have a disabled child.
01:15:55 Rachel
Yeah. So important.
01:15:57 Alyssa
Yeah. The Heather Avis episode is episode 232, if people are interested in that. And it was How to Build a Culture of Inclusivity at Home. And we talk about like how to be an advocate at your kid's school and things like that with some specific questions you can ask when you're going into spaces or like you're going to a concert, you're going to an event, ask, is this accessible for all humans? What do you have available to make sure it is?
01:16:27 Rachel
Yeah. Yeah. To take some of the weight off of the humans who are doing that work every single day of their lives.
01:16:33 Alyssa
Exactly. And the more people asking, the more people challenging this, the more I think we're going to see change happen.
01:16:40 Rachel
Yeah.
01:16:41 Alyssa
Yeah. Yeah. Cheers. Well, I feel grateful to have had the opportunity to learn from Kelley, and I hope folks snag her book.
01:16:49 Rachel
Yeah. Totally.
01:16:51 Alyssa
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