Built Different: Parenting With and Through Disability

You already know the version of parenting nobody warns you about: the one where you're fighting for your kid's needs and your own at the same time. If you're raising a child who's building different, or you're the parent who's disabled or chronically ill, this episode sits down in it with you, no pretending it's easy, no pretending you're alone.

In this episode:

→ Why disability isn't a niche topic for our community (more than 1 in 3 LGBTQ+ adults live with a disability, per RAND / JAMA Network Open)

→ Raising a kid who's building different: evaluations, IEPs, and finding providers who are both disability-competent and affirming

→ Parenting while disabled: invisible disability, the guilt spiral, and asking for help as a skill you can build

→ Where disability collides with healthcare access and money, and what to do

→ Builder Moves you can start this week, one at a time

This episode is for LGBTQ+, interracial, mixed-race, and non-traditional families who are building with intention, not just hope.

FREE QFW Travel Quiz -> https://qfamilyway.com/travel-quiz/

Transcript

KeisaB 0:02

Welcome back to the Table Builders. I'm Keisa B and this is QFW Parenting Podcast. It's July already. I- this time flies by. It seems like we just got done with school, and I'm just getting into the groove with camps or spending more time with the fam, and I'm already thinking about back to school because we got our supplies lists yesterday, and it's the first day of July. So whenever you're listening to this though, I'm sure you can feel how I'm feeling. Um, but there's also a lot of other things going on right now, and especially to do with health and health policies and some other facets. And so today we're talking about something close to home for a lot of us, and honestly, close to home for me too. Parenting with disability and parenting through it, both directions, because in this community, it shows up both ways, and sometimes it's your kid and sometimes it's you. Sometimes it's both. And July is Disability Pride Month, and I didn't want to do a surface level nod to it and just move on. I wanted to actually sit in it with you. So that's what we're doing today. And here's the thing that nobody tells you going into this. Disability isn't a side conversation in our community. It's not a niche topic that applies to a small slice of families. It's central to a lot of our lives, whether we've said that word out loud yet or not. But a lot of us are talking about it more. We are finding community in that, in many of our disabilities, and that should also be celebrated because you aren't alone. We aren't alone, and that's also part of the conversation we are having today and why it's so crucial and why I wanted to be vulnerable and, and talk about it. Actually, 36% of LGBTQ+ adults live with a disability, compared to 24% of non-LGBTQ+ adults. Yeah, you heard that right. More than one in three of us, not a footnote. That's a huge chunk of this community, and it means a huge chunk of the families listening right now are already living with this, even if nobody's ever framed it in that way. So let's start here because I think this is where a lot of families in the mix are living right now. You've got a kid who is building different. Um, a diagnosis, a delay, a difference that doesn't have a name yet, but you know it's there. Most of these differences start young, like when they're infants or toddlers especially, and then as they get into school or school type of activities, then you start to maybe notice some other cues, and that's where a lot of caregivers and parents really start to question and wonder if there should be some other testing that might explain why so that we can get the type of help that we need and be advocates for our kids because that's what we do as builders. And the moment you first notice it, it's usually not that diagnosis moment. It's a noticing moment. And what did that feel like for you? Like, what did you do with it? For many parents and caregivers who have gone through this and we have talked on the playground or in side chats, coffee dates, et cetera, a lot of it is first that it's not the diagnosis, it is the other things that they are noticing before the diagnosis even happens. And then after they finally have that opportunity, usually it has to be through a school or someone so they don't have to come out of pocket 'cause it can be pricey to get these things diagnosed, then it's the waiting. It's the evaluations, the wait lists, the system moving slower than your gut. Well, just know that you're not alone. So many people feel this, and what you're feeling in your gut is real, and just keep at it and keep loving and caring and providing for that little one because that is your... That is ultimately all of our roles, right? And that extra layer for our families specifically is finding a provider who is both disability competent and actually safe for a queer, interracial or a non-traditional family household. And that search is real, and it can be exhausting. And luckily, again, there are resources out there to help us. Usually you rely on your community first by networking and talking to other builders, but there also are some great links that we have at qfamilyway.com Go ahead and check out our research page, and there are some great resources to look nationally and then hone in on possibly what you have in your state, if not even more hyperlocal than that. Actually, LGBTQ plus students are diagnosed with a disability at roughly twice the rate of kids overall, about three in 10. Twice the rate. So if you're sitting there thinking you're the only family at pickup dealing with an IEP meeting and explaining your family structure to a new specialist in the same week, you are not. There are more of us than the data even captures because a lot of our families don't have the resources to get a formal diagnosis in the first place. And here's the builder move in this. You don't have to become an expert overnight. You have to become an advocate one appointment at a time. That's a totally different, much more doable job that you're capable of and you're doing it and it's seen. What if you're the one that's building differently? That you're the one that is going through this space, this life with disabilities, and maybe again, you haven't even been able to name them, or maybe you have, and you're taking care of yourself and having to be the caregiver and/or partner and/or provider for your family. Those are all very real things, and I've had to go through that myself, as well as other family members and friends that I have talked to. So now let's flip it, because a lot of the parenting and disability conversation out there is only about kids. It rarely talks about the parent, the caregiver, the one who's supposed to be the steady hand, who is also disabled, chronically ill, or navigating a body and mind that doesn't always cooperate with the job at hand. And shout out to all those who are doing that every single day and have been doing that because you all are rock stars. You are a rock stars Actually, in a national survey of more than 26,000 transgender people, 39% reported having a disability. and in a population-based survey out of Washington State, roughly one in three lesbian and bisexual women reported a disability too. This isn't rare. This is a real sizable part of who's raising kids in our community. Sometimes those invisible disabilities, the ones that are easy to brush off, does everyday things that just happen, like chronic pain or autoimmune conditions, mental health disabilities that don't show up on the outside, but shape every hour of your day at home or at work. And then when you are that main caregiver, you might have some guilt with it, especially wanting to, like, take care of, of yourself and own what that is. You have this story in your mind like, "I gotta be the good parent. You know? I gotta be the, I gotta be the one that's, that's always so strong." And we are all sold that. And this good parent narrative was never built with parents with disabilities in mind. And asking for help is its own skill. Especially as a woman of color, we have always been programmed that asking for help is the very last thing that we do. Maybe, maybe to our girlfriends, maybe to people who are, especially women, who are our closest friends, and they're usually other friends of color, do we rely on and ask for help. But it comes with it comes with a lot of guilt sometimes, maybe even shame, and taking on way too much than we actually can. I'm here to tell you that it's, it is a skill in itself to ask for help. It doesn't come easily, again, especially for women and for women of color. But that's not a failure. It's a skill and one a lot of us were never ever taught. So if this was you, I wanna say this plainly. Your kid does not need a parent or caregiver or guardian or mentor who does everything. Your kid needs a parent who's honest, who's present in the ways that you can be present, and who models what it looks like to advocate for your own needs. This is not a lesser version of parenting or caregiving. That might actually be the more honest version of you by asking that and by showing up. I mentioned before that there's a lot going on with healthcare and healthcare and actually money right now. Policies that are affecting us in the United States, So right now, disability doesn't exist in a vacuum. It runs straight into healthcare access and money every time. And for our families, that intersection hits pretty hard. Nearly half of disabled LGBTQ+ parents, about 45.4%, report difficulty meeting household expenses. And that number climbs even higher when you add race into the picture. So when you talk about building a life for your family, this is part of the real math. Not to scare you, but to make sure that you're not carrying this alone or being blindsided by it either. So I'm not gonna try to cover the whole healthcare and benefits landscape in one episode because it deserves its own real conversation. Actually, we've got a Kitchen Note piece coming this month, July 2026, that's going to walk through the Medicaid and SNAP changes families need to know about right now, plus the HSA investing question a lot of you have been asking me about. So keep an eye out on The Monthly Mix for that one. Well, a lot of people ask, "Well, what do I actually do with all this information?" So start with a simple advocacy letter, digital or physical, in which you'll have every evaluation, every diagnosis letter, and every accommodation approved. You will need it again and again, and sooner than you think, especially if your kids are still in school or if you're thinking about moving anytime soon, you already have those put together. Next would be, like, interviewing providers like you're interviewing anyone else who's going to be close to your family. Ask directly how they've worked with families that look like yours. That are LGBTQ+, or that are interracial, or that are non-traditional households, if they've ever had someone that they have helped that looks like yours before. It's an okay question to at least review the website, ask a nurse, e- even ask the doctor or provider directly. If you are the disabled parent, build one small specific ask you can practice saying out loud this week. Not like, "I need help in general," but something concrete, like, "Can you handle bedtime on Tuesdays?" Ask for that help specifically, because you deserve it. And just doing it once, you take a breath and allow it to happen more naturally with other things you might need help with. Find that other builder living a version of this. You don't need a support group with a syllabus. You might just need that one person who gets it without you having to explain the whole backstory. These people are invaluable, and for me, they make a huge difference. So find your people and shoot me a note in the comments, send me an email, send it to the community, share your story with us. And maybe you could be that person for, for someone else as well in this community. Disability Pride Month isn't about pretending everything is easy. It's about refusing to treat disability, yours or your kid's, as something to hide or apologize for. Building different is still building. It still counts, very much so. And that's what we're doing here at the table every time, making it happen together. So if this one hit close to home, share it with the builder in your circle who needs to hear it today, and pull up to the Monthly Mix at qfamilyway.com. The Monthly Mix lands in your inbox July 6th with builder hacks, kitchen notes, and table talk, including that benefits and healthcare piece I mentioned. Until next time, Q fam, take care of yourselves and take care of each other. Be well.