Episode 187: Disability Rights: Ins & Outs Parents Need to Know with Kelley Coleman
/In this week’s podcast episode, we will dive into the topic of parenting children with disabilities, specifically looking at disability rights and the ins and outs that parents need to know. I had the pleasure of interviewing Kelley Coleman, an author renowned for her book "Everything No One Tells You About Parenting a Disabled Child."
Here are some of the topics we covered in this episode:
Advocating for children with disabilities as a parent
Legal protections for children with disabilities (Diagnosed or Undiagnosed)
Navigating IEPs and 504 Plans: Challenges, Risks, and Strategies for Parents and Schools
Advocating effectively without fear of being a 'Squeaky Wheel'
Nurturing parents of children with disabilities through a nervous system reset amidst challenges and stress
Exploring the challenges of self-compassion and self-care among parents of children with disabilities
To know more about Kelley Coleman, visit her website www.kelleycoleman.com, follow her on Facebook @kelleycoleman, and Instagram @kelleycoleman.
Resources:
TRANSCRIPT
Parenting is often lived in the extremes. It's either great joy or chaotic, overwhelmed. In one moment, you're nailing it and the next you're losing your cool. I want to help you find your way to the messy middle, to a place of balance. You see balance is a verb, not a state of being. It is a thing you do. Not a thing you are. It is an action, a process, a series of micro corrections that you make each and every day to keep yourself feeling centered. We are never truly balanced. We are engaged in the process of balancing.
Hello, I'm Dr. Laura Froyen and this is The Balanced Parent Podcast where overwhelmed, stressed out and disconnected parents go to find tools, mindset shifts and practices to help them stop yelling at the people they love and start connecting on a deeper level. All delivered with heaping doses of grace and compassion. Join me in conversations that will help you get clear on your goals and values and start showing up in your parenting, your relationships, your life with openhearted authenticity and balance. Let's go!
Laura: Hello, everybody on this week's episode of the Balanced Parent podcast, we are going to be talking about disability rights and some of the ins and outs that we need to know about if we are parenting disabled children to help me with this conversation. I have Kelly Coleman who wrote a beautiful and very well researched book , Everything No One Tells You About Parenting a Disabled Child. Kelley, welcome to the show. I'm so grateful to have you here. Will you tell us a little bit about yourself? Who you are? What you do and then we'll dive in?
Kelley: Yes. Thank you so much for having me. What do I do in my free time? I listened to your podcast. Awesome. And I love that you lean into the fact that there's no answer to all the parenting stuff that isn't messy in some way. And I love how validating that is. So, thank you for being a part of that. I, I'm an author of my book, Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports is about how to do all of the stuff and the paperwork and the planning and it stems from over a decade of my own experience. I have two amazing kids. They're 10 and 12. My boys are the best of friends and they're both unique and quirky and hilarious and all the wonderful things. And our younger son, Aaron has multiple disabilities and for him, what that looks like is and overall undiagnosed genetic syndrome. Maybe we'll get an answer on that. Maybe we won't. We've done all the tests science has available. And with that, he checks boxes of autism, epilepsy, cerebral palsy, cortical vision impairment, feeding to microcephaly, fine motor, gross motor, sensory processing, cognitive behavioral, like all the stuff. He's like, I'm an overachiever. I'm just gonna keep checking boxes and within all of that he is just and I love that you smile when you say that, I say that because it's such a marked difference between the people who are like, cool.
Your kid sounds interesting. Tell me more. And the people who are like, oh you poor thing. And I'm like, don't like my kid is this like, vibrant hilarious human who is just like, I'm gonna go to the grocery store and I'm just gonna dance by the lettuces and come dancing and we're like, cool. So it's, yeah, it's great to be around people who are just like, you know what? You have a unique kid. And I'm like, yeah, they're both on their own path and disability happens to be on the path of one of my children. It is not always easy. I don't know that I believe people when they say, oh, everything is wonderful. And I'm so glad my child is disabled and I believe there are gifts. I believe there are lessons. I believe there are amazing humans who are disabled or not, but sometimes it's really hard and certainly the, the physical and the medical stuff, it can be exhausting and certainly all of the like mountains of paperwork that we have to do is just preposterous. But to get our son the support that he needs, it's what we have to do. And it's like this job that no one teaches you how to do and you're suddenly handed and it is a full time and forever job and good luck with that. And like, no, like it's on.
Laura: You know, caregiving for a child is a job in and of itself already. And then there's this extra set of expertise and know how and almost savvy that you have to also acquire to make sure that your child is getting the right support and access that they need and deserve and have a right to. Yeah.
Kelley: Oh my goodness. Yes. And no one knows how to do this. Even I've talked to special education teachers, neurologists, social workers who have said, I thought I knew all this stuff and then I had a kid with disabilities and, oh my goodness, like I had no idea. And we're all just thrown into this and we are doing the parenting piece of loving our kids and empowering them and encouraging to like, be all the things and do all the things. And at the same time, like you said, like, caregiving is a job and we're handed this full time job. That's a lot of paperwork and a lot of red tape and sitting on, hold on the phone forever that we are like figuring out how to do and, you know, hopefully we all have the good fortune to be in community with other parents and to connect with other parents because that is just such a difference between just feeling like you're drowning in all of this and feeling like you are able to tackle all the things.
Laura: Oh I, I, I imagine too that there's lots of folks who are listening, who feel very alone in, in this. So I let's get into some like maybe some specific conversations. So around if let's say a parent has just gotten a diagnosis for their kid, that means that they, and, and actually the parent doesn't really know what that means. It doesn't really know. Maybe they've been, the child has been struggling at school. Perhaps the, the school has, you know, is wanting to do things that the parents are not really comfortable with. It isn't really sure what their rights are like, what is the first step with for a parent in figuring out? Okay. So how can I advocate for my child? How can I make sure that their needs are being met and that they're supported? Was that the very first thing a parent can do.
Kelley: The very first thing that I think is so often gets forgotten is validating that parent and their feelings and recognizing if you are overwhelmed. And if you are feeling like I am inadequate and, ah, like, yes, that is how we all feel and you might feel alone in this because we all feel that way. But know that you are not and know that there are people and support that will give the tool who will give you the tools that you need. So, number one is, if anybody is like, oh, don't feel, don't be so upset, don't be so like, freak out as much as you need to because if you're just bottling all of this up, it'll just get worse and that part will snowball. And I feel like that is stop number one on protecting your mental health. Number two, and I know you've talked about this on other episodes of really knowing your child and seeing them for who they are and my child, his disabilities are visible, they are apparent, they are clear, they are genetic and part of his makeup. So no one is going to look at us and look at him and be like, oh no, your kid doesn't qualify for services like he qualifies so many families. Yeah, face a journey that is very different because perhaps their own disabilities and their childs are not visible. I have talked to so many friends who have been in this extensive gas lighting process for years in the pursuit of trying to get a diagnosis and or services and supports for their child, do everything you can to listen to that voice in your head. And even if evaluators who are educators or doctors or be like, no, no, no, no, no, that's fine. Oh, she's just a sweet kid.
She's just quiet. She's just shy. She, oh, she would raise her hand if she wanted to. She just doesn't want to, if you are looking at those signs and saying no, my child is having tremendous anxiety. My child is not able to process the visual or written information. These expectations are out of line with the way that my child's brain is processing information or the world stick with it because you are the expert on your child and be sure that you are checking in with your child. My son is a complex communicator by that. I mean, we don't have a conversation with words where he is giving spoken words back, but his words are vocalizations, gestures, some signs and he has a communication device for him. That's an ipad with a program where he touches buttons and it's saying the words, he wants to say, many kids can and do have conversations, be sure you are checking in with them. And if the teacher is saying, oh no, they can do the work. But the child is saying I can't and I'm not comfortable keep listening to your child. If you do not have other parents, teachers or doctors who are on this journey with you and who are believing you and all of this, every state has a parent training and information center.
Laura: Okay.
Kelley: They are largely staffed by parents who are on this journey themselves. The information is free and it is specific to your area. I'm in California, one of my very best friends is in Texas. We don't have the same laws and rules and supports and ways of going about things in place. So you need to be sure you're getting information, especially on school, especially on government and state funded sources. You need to find out what is available locally. And if you just Google parent training and information centers, you can put in your zip code and they will show you what's closest to you is a great place to start. Even under the same federal guidelines, things can be very different and there are big federal protections for individuals with disabilities, diagnosed or not. And we can all familiarize ourselves with the fact that your child does have protections, again whether or not they are diagnosed. And that's really important.
Laura: What are some of those protections that, that children with disabilities, regardless of whether they're diagnosed or not have access to?
Kelley: Yes. So I love this conversation and you know, whether it's in my book or in my conversation, so much of my information is coming directly from the experts, the leaders, the friends that I have gathered information from who are disabled themselves and that's where we should be getting information about disability is from disabled people because it sure sounds a lot scarier when we're just like, making stuff up in our heads and then when we talk with disabled people, we're like, oh, okay. This, this is the thing like we're good. So, learning from the lived experience and certainly look at laws like the Americans with Disabilities Act, which was only passed in 1990 which is so alarming and it defines disability very broadly. I'm not going to give you the exact proper wording. So somebody online correct me on that all you want. But it is defining disability as a physical or mental impairment that impacts the activities of daily living. That is a hugely broad definition and it is intentionally broad. It was written by people with disabilities. So there is no hierarchy of you are disabled enough or not, you are protected from discrimination under the law. And even if you do not say and identify as I am disabled, if you fit within the definition of the law and you ever need to lean on that for protections that is there for you.
And there's the Individuals with Disabilities Education Act, IDEA that guarantees everyone a right to a free and appropriate public education. How that is interpreted within each state, especially the word appropriate can vary. But that is what your child is entitled to under the law. And when you are having conversations with the school and speaking to the where do we even start with thi, saying my child has the right to a free and appropriate public education that is federal law that applies to each one of us. This is not appropriate, what's not appropriate. My child does not have the fine motor skills to hold a pencil and all of their evaluations are being based on things they write with that pencil, that's not appropriate. What are the accommodations that will allow my child to receive an appropriate education to be evaluated and to participate in an appropriate way. And I, I am so passionate about the discussion about accommodations specifically. They can be big, they can be small, they can be things other kids might never know about and it really varies from person to person and sometimes from day to day for the same person might need different things. Accommodations are not extra, they're not a privilege a kid is getting. If your kid, if your kid needs glasses and the kid next to him does not, we're not gonna give that other kid a pair of glasses just so it can all be equal.
Laura: No, of course not. No.
Kelley: You glasses to the board. And I think I think eyeglasses are a great thing to wrap our heads around that everyone can understand my eyeglasses that I'm wearing right now are an accommodation that allows me to drive my car safely.
Laura: Right. It's about access. Accommodations are about access. Yeah.
Kelley: Yes.
Laura: Yeah.
Kelley: Exactly. And I think it is so important to have that conversation with our children who may need or who may have accommodations because your child's comfort and safety is certainly a part of that. And are other kids or even teachers or other adults, because sometimes the bullying absolutely can be coming from the adults which is horrifying, but it happens all the time and we need to be aware of that. We need to ask our kid if they're saying I don't want to use the adaptive pencil because I'm getting made fun of. Tell me about that. I am so glad that you told me that. How are you feeling? Where is this coming from? What can we do together to make this better? And the answer might be tell the teacher to knock off the comments, which unfortunately happens. Most, most, most teachers are phenomenal and amazing and we have a great team and we're so fortunate but get to know your school team, your therapists, your doctors, anybody who's working with your kid, especially when you are not there so that they will be accountable to you. They will be accountable to your child. They will be accountable to the IEP, the IEP or the 504 plan that is in place.
Laura: Can we talk for a second about IEPs and 504 plans? So I've had a conversation with a few families where there has been pushback from a school district from the teacher or the school around even though when the child has a diagnosis, particularly in ADHD diagnosis, around getting a formalized plan in place and just going by a teacher by teacher, you know, kind of verbal accommodation plan. And I'm kind of curious about, about that, what are the risks for families going through like a non documented process? Why are schools pushing back on that? And then what, what can parents be do? Like should parents really be pushing to get something in writing for their kiddos? Is that an okay question to ask?
Kelley: Not really, is this okay, but like, can we talk about this every day with all the people? Oh my goodness. This is, this is a massive question. And again, my, my bias is towards teachers. We've had some, some tricky experiences, but we've had these amazing experiences and so many friends who are educators and.
Laura: I just want to also note like my entire family are teachers. Like literally, I had one uncle in my entire extended family who is not employed by the public school system. So I, I adore teachers.
Kelley: Yeah. And we need, we need to talk about how we are supporting the teachers in all of this. So, and we've had so many friends whose like my kid clearly needs an IP for a gazillion reasons. So we haven't had, we've had plenty of push back on things within it and we've got another meeting in three days.
Laura: So many meetings.
Kelley: So many friends who have gotten pushback and even being evaluated on getting a document.
Laura: I experienced that with my daughter. So my daughter, my oldest daughter is autistic and she continues to not, she doesn't read, you know, it's completely invisible and she, she's, you know, a talented masker in many circumstances anyway. So yes, that push back is, is real for lots of families.
Kelley: And thank you for sharing that. And I think even before we like get to the, how do we deal with this? Acknowledging the pushback is real much of the research that has been done and how the evaluations were developed and how educators were educated on how to figure all of this out is based on young white males.
Laura: Yes.
Kelley: So the diagnostic criteria for a young white male might not apply to your teenage daughter who has a very clear neuro divergence of her own and know that it's hard, know that race can play a huge factor in this. And I know you've spoken with be on your podcast before about kids getting shuffled off as, oh, this is willful, bad behavior and we need to punish the heck out of this. So they'll stop and black boys especially are disproportionately labeled as that rather than saying I see you and I see that you need different support than I am giving you. Let's figure that out. That's, that's what we need to do. And even if there was something willful in any child's behavior. If we approach things from a place of means, the grown up, maybe I try something different to address your needs.
Laura: With all my resources.
Kelley: And my kids would feel seen in a way that they might say my brain is not processing this class, but my heart says I trust you. Like, let's build that trust. And speaking of building trust, the reality is even in situations where we are dealing with a doctor, an educator, a therapist, whomever who is challenging or who is not being supportive, we might not have a choice but to deal with that person. And we need to remember that and that can be so hard. I have, I have had that person in our lives and in our son's life and there's an amount of paperwork before you can change a school or a classroom or an IEP or whatever. So that as hard as it is go into this knowing, you might have to keep dealing with this person and this person might be a gatekeeper. So your job and your desire is to support your child in achieving their best outcomes. If you have, we'll say teacher, it can be anyone if you have a teacher who is not supporting that. And they say, you know, we don't need an IEP. Try saying to them, I want to make your job as a teacher as easy as possible. All of this like we're gonna do this. We're gonna do this. We're gonna do that. There is no obligation to follow through with any of that unless it is in writing and not just an email back and forth of, I'm going to sit your child closer to the board because they can't, they can't see if they're in the back of the room. It needs to be in writing, if you have, if you would like any expectation that it will be followed up on. I very often say to teachers, I need to make it easier for you to support my child to do all of the things, we need to do this so that we can all be on the same page.
Parents in the IEP process part of the process is that you are an equal team member even before or if you never have an IEP. View yourself as an equal team member. Be in frequent communication with that teacher. Ask them what is the best way for me to communicate with you? Do you like a text every Tuesday afternoon? I'll put that on my calendar. You'll get a text. Do you prefer to schedule conferences? Phone calls, like meeting at the at the gate during school pickups? What works for you? And it can be hard when you feel like you're not getting the support you need. The reality is if your child is not getting free and appropriate public education. Another term that is used in the IEP process children need to be able to access their education. If your child is not able to access their education, that needs to be the conversation if your child is turning in their homework every day, but it took them 5.5 hours to write three sentences. And that is a story from good friends who have experienced that, that is not appropriate and you need to bring that up. If you are the parent who's moving these mountains and is supporting your child and not doing the work for them, but walking them through, if it's taking you five hours to do homework that other kids are doing in 15 minutes, that is a red flag and listen to that. Listen to your teacher ask the teacher instead of coming in just saying, this is too much.
We got to change this. Saying, hey, I'm curious what the general expectation is for how long it should take a student to, to finish the assignment and how much support students we, we should be expected to give our students in this. And then when the teacher says like 15 minutes while you're making dinner, you can just give them a high five when it's done. And if it's, then you have that information to then have a real conversation. And yes, you do need to information gather and it is exhausting back to the beginning of our conversation. If you're exhausted by all this. Yeah, you're right on track. But information gather and assume, assume everyone has the best intentions. Assumed your teachers and therapists and social workers and everyone are overworked because I'm pretty sure they are and approach things from a place of, I know you want my child to succeed. I want to make your job easier. Let's do this together. And if they push back on an IEP, say, can you tell me reasons why we wouldn't do that?
Laura: And if they said, I just don't think it's necessary.
Kelley: We're not putting this into place. And then people usually trip over their words very quickly and you can say great, let's give it a try. We can get rid of it if it doesn't work. But for me, as a parent, in order to better support my child, you know, put it on your shoulders whenever you can, I am really struggling to help support what's going on in the classroom at home. If we had goals in an IEP laid out your IEP will most likely have a annual goal and then incremental goals within that. So, you know, that would really help me and I know that you're open to just having conversations about this, but I'm struggling.
Laura: I like that, taking it on yourself, too.
Kelley: Taking it on yourself. And also like you are, you're not apologizing for you, you're not apologizing for your kid. But you're saying like, hey, we're a team and this is important and really look at you know what they are looking? What are they evaluating for your child? How are they evaluating it? Is it in a way that is comfortable for your child? How does your child feel about? For example, if the school district says, I think your child needs a 1 to 1 aid full time at school. How does your child feel about that? Do they feel like that would cause social anxiety, stress isolation, whatever if there's a grown up helicoptering and if you say I agree, my child needs this support. Let's talk about how to do this in a way that is still conducive to all the social interaction that my child needs and deserves under federal law because that is what is appropriate for all children at school to have appropriate social emotional days.
Laura: Yeah. Okay. And so I, I do, I know I hear from a lot of, I kind of sometimes I feel like I hear my listeners in my head. So there's the conversation of like this sounds like a lot and it's exhausting and I think we need to have the conversation of how do we care for ourselves. But before we get there, I think a lot of parents really worry about being the squeaky wheel and as are advocating for their child, I think that they worry about making it so that teachers don't like their child or that you know that they are being a nuisance or being extra you know, and I, I'm kind of curious if you have a little bit of a, some, some, I don't know permission for these parents that this is actually, it's actually okay to be the squeak squeaky wheel for your child.
Kelley: Not only is it okay. It is very often necessary. And I have yet to talk to a parent who looks back and says, you know what? I really wish I wouldn't have pushed so hard to get these supports in place for my child. Oh, I really wish I wouldn't have advocated so much. Oh, I really wish we hadn't added that goal into the IEP. Do your best with where you are right now. Know what your kid needs and know that it serves you and your child. If you are the phone call that people want to return, if you are leaving messages where you are just bananas and you have a chip on your shoulder and you're yelling and screaming about all the things I want to do that so badly. And in my head, I'm doing that, however, no one wants to return that phone call. So unfortunately, you do have to take into consideration how you are approaching every single interaction. I was recently told and we have a fantastic school team and IP team and it's massive because, you know, we have a dozen people on our school team. I was recently told that he really likes you, but they're all afraid of you. And I was like, that's exactly what we want. Why are they all a little bit afraid of me, quote unquote. It's because I stand firm in who my child is in, what support he needs in having high expectations and knowing his rights.
Part of all of that is asking questions if, as a parent, you're thinking, I don't know what my child's rights are. I don't understand these acronyms. I don't know how the heck to figure out these goals. If you're like, I don't know. Cool. What you want is you want to learn and you need to and I know this can be so hard for so many families, especially when there is a language barrier. When they are mistreated or othered or all the things, it can be hard to stop one person or a whole meeting full of people and saying, wait, I have no idea what that sentence just meant. Can you repeat that again? And then I'll ask you about the words that I don't understand. The reality is and I hope everyone firmly understands that does not make you look ignorant, that makes you look engaged and you don't want to be the screaming parent. You want to be the engaged parent because that is the phone call that people want to return. The parent who says I know that you want to support my child. I want to make that easier for you. And I want to be an equal team member. Therefore, I will keep asking you questions because I can't be an equal team member if I don't understand the sentence that just came out of your mouth. And especially in IEP meetings and those documents, like, can we just all chip in and hire a graphic designer to like, make IP documents look like a social media post or something? Like they're awful. I have to read one this afternoon and I'm just like, oh, here comes, it's hard for me and I've been doing this for years.
Laura: I think that that's probably important to hear is that it is hard. It's hard. Yeah. And it, you know what you were just talking about. I was thinking about the emotional and mental labor that's involved in, in navigating those relationships well, too. Right. So, regulating yourself, ho holding in when you want to rage about your kid, not having access to the supports that they need and have a right to, you know, being able to, to assume the best of, of everyone on their team and come in with a voice that it can be heard. You know, that's a lot of them, emotional and mental labor and it takes a toll. It, it's, it's a lot.
Kelley: It is a lot and it is so much and there's so many meetings where I have like loud screaming, punk rock music queued up on my phone that as soon as I get in my car, it's like the windows are down and the music is up and I'm screaming right along because it's like.
Laura: What are some of the. Yeah. Yeah. Tell me some of the ways that you reset your nervous system or kind of complete that cycle or give yourself permission to, you know, to release some of those things. And like, how do you care for yourself in the midst of this?
Kelley: Something that I have learned through the last decade of doing this is to have the best sense I can of what I can control and what I cannot control. If we are raging over the things, we cannot control, we're just going to keep raging and we will just feel worse because we will never fix that problem. Period. If we are aware of what we can control, it gives us a clear path forward, not an easy path. None of this is even the easy days are often not easy and try to anticipate in my life. There is so much we cannot anticipate, try to anticipate. For example, every March, we have our annual IP meeting I put on the calendar for the for the first week in January email, our assistant principal suggest a date and a time that works for me. And because I'm emailing so far in advance, we tend to get that date and time for our meeting because that's what works for me. And I request all of the documents in advance because I know I need time to read everything in advance. And I know that I need to anticipate all of these steps of a very long and it's, it's never thrilling. It's often real boring reading all this stuff, but it's really important. And again, it's hard for me and I've been doing this for years, but anticipate our annual meeting for social services, our annual IEP meeting, our specialist meetings that we know we have scheduled and I literally section of time on my calendar for reminders of the neurologist is going to want to know these things. So I need to get my log of this. I need to check the expiration dates on medication. Like I schedule all of that in my calendar so that there is a sense of I can do this and I'm able to.
Laura: Yeah, you're offloading your executive functioning. Good job.
Kelley: Thank you. By the way, that's very long winded answer is exactly what you just said. How can you offload executive functioning? That's why you're the host. That's exactly it. Of what can we just make automatic. And that in my experience gives me the space to say, you know what, I'm going to take a really long walk with the dog this morning because that's what I need for my mental, mental and physical health. Even though I need to read the IP document, we've got the meeting, we've got all of this stuff. I've realized I can control that workflow. And I've done that so that I can take the time to walk the dog, have dinner with my husband, just hang out and play with my kids, do whatever self care thing I need to do because all of the job and the work of the caregiving piece I've created space for that. So I don't have anxiety of whether or not it will get done and how the heck am I going to do this? Because I've created systems that allow me to say, well, that's gonna be fun. But it's on the calendar for Wednesday afternoon. So I'm doing it and therefore Wednesday morning, I can do other things.
Laura: Yeah, you can kind of mindfully and intentionally take care of yourself so that you are in a good space to do some of the harder things that you know, you have to do.
Kelley: Absolutely. And I was talking to a friend the other day that said her process is a little bit opposite. Is that first? She schedules the time for herself. She's like, I know I need to go to church on Sunday morning because that gives me the energy to then come home and schedule all this stuff and figure out what the thing is that allows you to check those boxes in a way that they are not taking over your life.
Laura: I like that. And I, I like the permission too to just get to know yourself. I think that, you know, we, we often go through life, not really asking ourselves, you know, what it would be the most kind and compassionate thing I could do for myself right now. Or knowing I've got this thing coming up, you know, what is it that I need in order to be able to walk into that as my best self, we don't, we don't do that a lot. And especially as parents when we've got complex kiddos who need a lot of us who are borrowing our executive functioning, you know, who are, you know, I mean, it's, it's kind of hard and complicated to make that space for us, for ourselves.
Kelley: It is and acknowledging that to yourself. I also advocate for having real conversations with your kids if this week, I am preparing for this IP and I'm like, you know what guys, we're having some new leftovers for dinner because I am so stressed out trying to read these documents and figure out what they are. It is worth it and I am so happy that I'm able to do it. But this is the hard thing. You are not the hard thing. And naming out loud like this stuff is hard and that's ok and hard things are not bad. Hard things are part of all of our lives. And, and again, this comes from talking to so many disabled adults who have said talk to your kids about the hard things and especially you know, acknowledge their feelings when something with their disability is hard for them, because it takes away those feelings of like shame and aloneness and this is just me and I'm, I'm quote unquote bad or whatever because of the way that my brain or my body works and say no, your brain or your body does work in a different way than your brothers or your classmates or the guy at the grocery store. Lots of people do. We need to catch up to you. You don't need to change or mask or whatever the thing is to catch up to us. So I know it's hard to have patience with me sometimes, but I'm working hard to catch up to you and I love that you are part of that.
Laura: Yeah, I like that framing too. I think gosh, that's a whole other conversation. How to, how to sit with our kids, especially as they begin noticing and wondering about their differences and creating their own relationship with, with that. You know, I feel like I wish we could have a whole other conversation.
Kelley: Oh my gosh, many conversations and also can be a very different conversation if the parent does not share the disability, if the child's disability is visible, if their disability is not visible. And what is their comfort level with sharing their very personal information with others. You are not ever obligated to share your personal medical information with anyone and some children very much want that information out there because they think, oh, that helps other people to understand me better. And isn't that great? Other children might say kids are gonna make fun of me. Kids are gonna other me and not want to sit with me if I tell them X Y and Z about me. So we got to keep that under wraps and there's no one way to do this. Right. Wouldn't that be nice?
Laura: Yeah. Yeah. I, I, I think it's so good to be talking about these things. So I think the last thing that I wanted to just talk about is, you know, so I feel like what we've talked about in terms of self care and you know, caring for the self is not that different than it is for all parents because parenting in general is just hard. I wonder if there are there any pieces to kind of, what does compassionate self care look like that are, that are different that we need to pay particular attention to if we're parenting a disabled child?
Kelley: Yes, I, I think you are absolutely right. There is so much crossover for all parents of all children. When your child's support needs are exponential. The demands on you are exponential and you really do need to view parenting as a job and that is with all the parenting things. Caregiving is a job in addition to that with loads of overlap and we need to find a way to make the job of caregiving sustainable. And sometimes it is all of the boring, the paperwork and the the phone calls and the stuff for me that is a full time and forever job and I need systems in place so that all the like go have brunch with your friends, you know, go get a manicure. All of that stuff can be possible because I am working with different demands on my time, on my brain, on my energy. We need to acknowledge that we are working under different constraints as caregivers. We need to make space for caregiving as a job so that we can also make space for ourselves as people. Our job is not to erase ourselves so that we can give everything to our children and it's very easy to do that. But think about what you actually need. You might need an easier way to figure out what is in that IP document, know that and call a friend, go to an online support group so you can talk through things, figure out what support you need in order to be a person in addition to a parent and a caregiver so that you do not feel guilty or ashamed or overwhelmed by taking your dog on a long walk or whatever the thing is that you need.
Laura: Yeah, I, I love that. I think that it's really important to highlight those, those distinct individual roles and hats that we wear and acknowledge that like we don't have to lose our personhood in this process of raising these amazing kiddos. You know that we, we still get to be our ourselves and have our own lived experience. You know that we are human beings having a lived experience, just like our children are human beings, having a lived experience. And that overlaps sometimes. And we have to, we have to still honor the, the individuals that we are too.
Kelley: Yes. And when you do lose yourself in this because you probably will, you're still in there and you're still worth coming back to and available to come back to. So if you're like, man, I have lost myself. Don't, don't shame yourself or lose sleep over it. Maybe that's what you needed to do because there were, there was a trip to the emergency room, cool, be present for that and then find the time to be present for yourself.
Laura: Yeah, I think that it's, you know, so often we think that it is that it's juggling, you know, and constantly trying to keep like all of the balls in the air at once and sometimes it's mindfully setting a ball down for a time, a period of time. You know, like when we talk about, I mean, we're kind of skirting around the word balance here and I think the word balance. I, I use it in the name of my podcast as a tongue in cheek, kind of poking fun at the idea that we can be balanced and it, I just, I don't, I don't think it's necessarily realistic in some certain circumstances. It's about noticing, noticing when things are off kilter, being aware, even if we can't do anything to change it in that moment in time, but being aware of it and bringing it back as opposed to, because being kind of completely oblivious to, to where we are, you know, and, and there, I think that there are times there is a very real constraints on us. I really liked what you said that we are parenting in, under different constraints. And, you know, a lot of the families that I work with, who are in my membership, they, they don't have people in their real lives who are parenting, you know, kids who are twice exceptional or, you know, all of the who they just the, the, the other parents in lives just do not understand. They don't know, the extra constraints. And so I, I so agree, finding a community where you can just feel seen and heard and like, like you're not alone, you know, that you're not the only one who's having to, to do these things is also really important.
Kelley: Yes. And also a community where there is no comparison or competition of my kids more to say, you know, like, you know, we friends, we gotta, we gotta knock that off, like.
Laura: Is that a thing?
Kelley: Your kid might be? Yeah. Oh my God, that's such a thing. Well, and that a lot in, in some circles, my, my child is the quote unquote most disabled. In some circles, he is the quote unquote least disabled. And, you know, if somebody says, like, man, my kid is a picky eater and we're really struggling. I don't need to jump in and say, well, my kid has a feeding tube. No, because all I'm doing is just shutting them down and like patting myself on the back because like, oh, we must have it harder. Like, you know what? It's actually easier in some ways. We need to all remember to listen to one another because my heart is my heart and your heart is your heart. And my kid might check more boxes than yours. But we are all, you know, in, in my book and my friend Jill gave this quote to me, which I just love. She said we are all in the same ocean, just in very different boats. And so like, let's just be in the ocean together and like, I might be in a rickety old canoe today and you might be in like some fancy ocean liner, but like we're all in the ocean, like we're all in this together.
Laura: Yeah, I really like that. Oh, gosh, that comparison thing. It really does steal a lot from us. So I, I agree. Yeah. Well, Kelly, thank you so much for spending this time with us. Today, I want to make sure everyone can find you. So your book is available everywhere, I'm assuming. But where, where can people go to learn more about you and from you?
Kelley: Yes. So my website kelleycoleman.com and that's kelleycoleman.com. And I look forward to hearing from everybody. The book is Everything No One Tells You About Parenting a Disabled Child and it is just how to do all the stuff. So we can just spend less time with the paperwork and just more time loving our kids.
Laura: I love that. Thank you so much.
Kelley: Thank you.
Okay, so thanks for listening today. Remember to subscribe to the podcast and if it was helpful, leave me a review that really helps others find the podcast and join us in this really important work of creating a parenthood that we don't have to escape from and creating a childhood for our kids that they don't have to recover from.
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All right. That's it for me today. I hope that you keep taking really good care of your kids and your family and each other and most importantly of yourself. And just to remember, balance is a verb and you're already doing it. You've got this!