NeurOrdinary S2E10 | Navigating Stress & Uncertainty: Self-Care Tips for Parents of Autistic & Disabled Kids
NeurOrdinary Podcast S2E10 cover image - supportive audio guidance for autism parents navigating the challenges of self-care and parenting during difficult times (and an endless news cycle).
Welcoming you to a brand new episode of NeurOrdinary! In this one, I’m getting really real about what it’s like to parent an autistic or disabled child when things feel extra uncertain, especially with all the recent talk about changes to disability funding and support services.
This episode is all about finding ways to stay steady and resilient when the world feels shaky. I walk you through practical strategies for self-care and managing stress, including tips for setting healthy boundaries with the endless news cycle, so you can stay informed without burning out.
We dig into grounding techniques (shout-out to my favorite, the five-four-three-two-one method!) to help pull you out of the swirl of anxiety and back into the present moment when those “what ifs” get loud.
Mindfulness is another big theme, and I share simple ways to weave it into your daily rituals (even five minutes can make a difference!) and give you pointers on how to actually build these habits so they stick. Plus, we talk about community: how connecting with other autism and neurodivergent parents can help lighten the mental load, and how to get involved in advocacy without tipping into burnout.
If you’ve been feeling overwhelmed, stretched too thin, or just plain exhausted by everything going on, this episode is filled with reminders that you are not powerless, you’re doing enough, and you’re absolutely not alone. Grab your coffee, find a cozy spot, and let’s build some resilience together.
* Please note: names used in this podcast may have been changed to protect the identity of my coaching clients and their children.
Resources Mentioned in This Episode…
Join the Self-Care Support Squad Substack! For just $7/month, get access to monthly group coaching calls, replays of The Ultimate Autism Parents Self-Care Workshop, and more!
Check out free guided meditations to help you build resilience and practice mindful awareness here.
Parent Resource Center: Get The Help Your Autistic Child Needs...For Free!
Autism 101 For Parents: How Meditation Can Help You...And Why You Should Do It
Mindfulness as a Self-Care Tool for Autism Parents: Prioritizing Your Wellbeing
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Transcript
Hello, dear listeners, and welcome to another episode of NeurOrdinary, where we navigate the unique journeys of autism parents and neurodivergent individuals. I'm your host, Karen Kossow, and today, we're diving into a topic that's both timely and deeply personal: caring for yourself as the parent of an autistic or otherwise disabled child during these unprecedented times.
Recently, many of us have felt the weight of uncertainty, especially with discussions about potential changes to disability funding and support services. It's a challenging landscape, and it's natural to feel concerned about what the future holds for our families. Today, we'll explore practical strategies to bolster your resilience, prioritize self-care, and maintain mindfulness amidst these external stressors.
So let’s dive in!
Stay Informed, But Set Boundaries
Being aware of potential policy changes is important, but constant exposure to distressing news can be overwhelming. It's crucial to find a balance that keeps you informed without draining your emotional reserves. Here are two tips…
Tip #1: Allocate specific times to check news updates, perhaps once in the morning and once in the evening. Outside of these times, focus on your daily routines and family.
Tip #2: Choose reputable sources for your information. Engaging with sensationalized news can heighten anxiety. Opt for official communications from disability advocacy groups or trusted news outlets.
Here’s Why This Works: Controlled information consumption prevents emotional burnout. By setting boundaries, you protect your mental health, ensuring you remain a stable support for your child.
The urge to stay constantly updated can be strong, especially when decisions may directly impact your family. Combat this by reminding yourself that excessive monitoring doesn't change outcomes but does affect your well-being. Engage in alternative activities during downtime, like reading a book or taking a walk, to divert your focus.
By managing your information intake, you maintain the energy needed to navigate both daily responsibilities and unforeseen challenges.
Grounding Yourself: When the World Feels Like Too Much
Ever had one of those moments where everything just feels like too much? Maybe you’re scrolling the news, and there it is—another headline about cuts to disability services. Maybe you just got an email about your child’s IEP, and it’s full of “unfortunately” and “due to funding.” Or maybe it’s just the everyday stuff piling up—meltdowns, medical appointments, the weight of constantly advocating.
And suddenly, you realize you’re holding your breath. Your chest feels tight. Your mind is racing through worst-case scenarios.
This is where grounding comes in. It’s like hitting the pause button when your brain is stuck in overdrive. Grounding helps pull you out of the spiral of fear and back into the present moment, where you have power, control, and the ability to take the next step.
Okay, But What Does That Actually Look Like?
Let’s say you just read something online that made your stomach drop. Instead of letting the panic take over, try this:
Push your feet into the floor—literally. Feel the ground under you, solid and steady.
Use the 5-4-3-2-1 method: Name five things you can see, four you can touch, three you hear, two you smell, and one you taste. It’s a quick way to pull your brain out of the fear and into the now.
Hold onto something comforting—a soft blanket, a smooth stone, a warm cup of coffee. Pay attention to the texture, the weight, the warmth. Let it remind you: I am here. I am safe. I can handle this moment.
It sounds simple, but trust me—it works. It’s a way to tell your nervous system, Hey, we’re okay right now. We don’t need to stay in panic mode.
Why This Works (Especially for Autism Parents)
If you’re anything like me, your brain probably spends a lot of time in high-alert mode. Between managing schedules, meltdowns, medical paperwork, and advocacy, it’s no wonder our nervous systems feel fried.
Grounding works because it shifts your focus away from the what-ifs and back to what is. It helps your body move out of that constant stress response so you can actually breathe again. And when you’re breathing? You can think more clearly. You can respond instead of reacting. You can show up for yourself and your kids with a little more steadiness.
But What If I Forget to Do It?
Totally normal. When you’re overwhelmed, it’s hard to remember these things. A few tricks to make grounding a habit:
Pair it with something you already do—press your feet into the ground every time you brush your teeth or take a deep breath while waiting at a red light.
Stick a reminder somewhere you’ll see it—a sticky note on your mirror, a little rock in your pocket, or even a reminder on your phone that just says Breathe.
Practice when you’re only a little stressed—don’t wait until you’re fully spiraling. Try grounding when you’re stuck in traffic, feeling impatient in a waiting room, or even during a quiet moment with your coffee. The more you practice, the easier it gets.
You Deserve to Feel Steady
The world might feel out of control right now, but you don’t have to. Grounding is one small way to take back your sense of calm, even when everything else is uncertain. You don’t have to carry all the stress, all the time. You’re allowed to pause, breathe, and remind yourself:
I am here. I am safe. I can handle this moment.
And you really, truly can.
Establish a Mindfulness Routine
In times of external turmoil, cultivating an inner sense of calm becomes essential. Mindfulness practices can help anchor us, allowing us to respond to challenges with clarity rather than react out of anxiety.
Idea #1: Consider starting your day with a simple breathing exercise. Before the household awakens, find a quiet space, close your eyes, and take deep, deliberate breaths. Inhale for a count of four, hold for four, and exhale for four. This practice can set a peaceful tone for the day ahead.
Idea #2: Incorporate mindfulness into daily activities. While washing dishes or folding laundry, focus entirely on the task at hand. Notice the sensations—the warmth of the water, the texture of the fabric. This grounding technique can transform mundane chores into moments of calm.
Why This Works: Mindfulness shifts our focus from external uncertainties to the present moment. By grounding ourselves, we reduce anxiety and increase our capacity to handle stress, making us more resilient caregivers.
Challenges and Tips to Overcome Them: It's common to feel there's no time for mindfulness amidst a busy schedule. Start small; even five minutes can make a difference. Use reminders, like setting an alarm or placing a note on the fridge, to prompt these moments of presence. Need a little more help? Check out my YouTube channel for free guided meditations made specifically for neurodivergent and autism parents like us.
Remember, by nurturing your inner calm, you're better equipped to support your child through any external challenges.
Build a Support Network
No one should navigate these times alone. Connecting with others who understand your journey can provide emotional relief, practical advice, and a sense of community.
Join local or online support groups for parents of autistic or disabled children. Sharing experiences can offer new perspectives and solutions you might not have considered. Or, establish a check-in routine with a trusted friend or family member. Regular conversations, even if brief, can provide a valuable outlet for your feelings and concerns.
That’s because a support network offers validation and understanding while reducing feelings of isolation. Knowing others share similar experiences can bolster your resilience and provide practical coping strategies.
Challenges and Tips to Overcome Them: Initiating connections can be daunting, especially if you're introverted or new to support groups. Start by attending a meeting or joining an online forum to observe. Engage at your own pace, sharing when you feel comfortable. Remember, these spaces are designed to be judgment-free zones.
By fostering connections, you create a safety net that supports both you and your child through uncertain times.
Advocate Within Your Community—Without Burning Yourself Out
I know, I know. The idea of adding one more thing to your plate might sound impossible. You’re already juggling IEP meetings, therapy appointments, meltdowns, medical paperwork, and maybe—if you’re lucky—five minutes of quiet before someone needs a snack. So when I say “get involved in advocacy,” your first thought might be: Yeah, right.
But hear me out.
Advocacy doesn’t have to mean running for office, organizing protests, or spending hours in meetings. It can be as simple as showing up where you already are and using your voice when it matters. And here’s the thing: even small actions can protect services that your child—and thousands of others—depend on.
Right now, policies affecting disability services, Medicaid, IEPs, and waiver programs are changing fast. And while national politics can feel overwhelming, local advocacy is where you can actually make a difference.
Where to Start: Small, Doable Steps That Matter
If you’re not sure how to begin, start by picking one way to get involved. Here are a few ideas, both in-person and digital, that fit into a busy parent’s reality.
Speak Up at School Board or Town Council Meetings – You don’t have to prepare a fancy speech. Just being there makes a difference. When schools discuss funding for special education, show up and remind them why these services matter. Even if you don’t say a word, your presence tells them: We are watching. We care. This matters.
Submit Comments on Policy Changes – Did you know that when policies affecting Medicaid, special education, or disability services are up for revision, public comments can influence the outcome? Many parents don’t realize they can submit statements (often online!) that go on record. If you see an organization calling for comments, take five minutes to send in a message. Your voice counts.
Team Up With Other Parents – You are not in this alone. Connecting with other parents—whether online or in-person—creates a support system. Start a group chat. Share resources. Attend a workshop together. When the weight of advocacy is shared, it’s so much easier to keep going.
Support Organizations That Fight for Us – You don’t have to reinvent the wheel. Groups like the Arc, the Autistic Self Advocacy Network (ASAN), and local disability rights organizations are already doing the work. Follow them. Share their updates. Sign petitions. If you can, donate—even if it’s just a few dollars. Most importantly, follow your local Parent Resource Center, preferably via email. I’ll include a link to find the center for your local area in the show notes.
Use Social Media (Strategically!) – I know social media can be a lot, but it can also be a powerful tool. Sharing info about upcoming policy changes, disability rights issues, or ways to take action can reach people who wouldn’t have known otherwise. The key? Set boundaries. Engage when you have the energy, and step back when you need to protect your peace.
Why This Works (Even When It Feels Small)
Local advocacy is powerful because decisions about our kids happen in rooms we don’t always see. When parents show up—whether in person or online—those decisions become visible. Officials are less likely to cut services when they know parents are paying attention.
Even beyond policy changes, advocacy gives you back a sense of agency. When the world feels overwhelming, taking action—even a small one—reminds you: I’m not powerless. I can do something. I can make this better for my child.
And honestly? That alone makes it worth it.
But What If You’re Already at Your Limit? (Self-Care & Advocacy Can Coexist!)
Let’s be real—burnout is a thing. And as neurodivergent and autism parents, we’re already walking that tightrope. So how do you balance advocacy with taking care of yourself?
Give What You Can, When You Can – Some seasons of life allow for more involvement than others. Maybe this month, all you can do is send one email or share one post. That still counts. Give what you can, without guilt.
Lean on Community – Find other parents who understand. Split responsibilities. Maybe one parent attends a meeting while another takes notes from home. Advocacy doesn’t have to be all on you.
Know When to Step Back – If advocacy is draining you more than it’s empowering you, it’s okay to pause. Rest is part of resistance, too.
Remember Why You Started – When it feels like too much, come back to this: I’m doing this for my child. I’m doing this so the next generation of disabled kids has it easier than ours does. Let that fuel you, not exhaust you.
You’re Already an Advocate (Even If You Don’t Call Yourself One)
You fight for your child every single day. You explain their needs to doctors, teachers, and therapists. You push for services. You make sure they get what they need.
That’s advocacy. That’s already changing lives.
If all you do today is take a deep breath and keep going, you’re doing enough.
And when you do have the energy to take one small step toward protecting the services our kids rely on? That’s enough too.
Because every action—big or small—adds up. And together? We are powerful.
Conclusion
Parenting a disabled child is already a journey filled with twists, turns, and plenty of detours. Add in political uncertainty, and suddenly, it can feel like you're driving blindfolded on a road that keeps shifting beneath you. It’s exhausting. It’s frustrating. And some days, it’s just too much.
But here’s what I want you to hold onto: You are not powerless.
You can’t control everything happening around you (as much as I wish we could). But what you can do is build a foundation that keeps you steady, no matter what’s going on outside your door. Mindfulness, boundaries, community, and advocacy—these aren’t just buzzwords. They’re tools that can help you protect your energy, stay grounded, and keep showing up for yourself and your child.
Mindfulness reminds you to breathe when everything feels like chaos.
Boundaries give you permission to say no to what drains you and yes to what restores you.
Community reminds you that you don’t have to carry this alone. (Because you don’t.)
Advocacy—big or small—lets you turn frustration into action, even when the world feels out of control.
And the best part? You don’t have to do all of this perfectly. Some days, you’ll have the energy to show up and fight. Other days, the win is simply getting through the day in one piece. Both are valid. Both are enough.
A Social-Media-Free Space for Real Support…
If this conversation resonated with you, and you’re craving a space where self-care and real talk go hand in hand—without the doomscrolling, without the noise—I’d love for you to join my Substack community.
Here’s what you’ll get when you join:
Encouraging, supportive emails to remind you that your well-being matters, even on the hardest days.
Practical self-care strategies designed for neurodivergent and autism parents—small, doable steps you can actually fit into your busy life.
Mindfulness practices and affirmations to help you stay grounded when the world feels chaotic.
Exclusive content and behind-the-scenes insights on self-care, parenting, and navigating life as a neurodivergent parent.
A judgment-free, drama-free community of like-minded parents who get it—no social media required. You’ll find the details to join us in the show notes below.
I know how overwhelming it can be to sort through all the noise online, trying to find support that actually feels supportive. That’s why I created this space—to give you a break from the overwhelm and a place where you can breathe, reset, and be seen.
Because no matter what’s happening around us, one thing remains true: You are not alone in this.
Thank you for being part of the NeurOrdinary family. Thanks for listening! New episodes of the NeurOrdinary Podcast drop every Thursday. Until next time, take gentle care of yourself and cherish the little moments that bring you joy. If you found this episode helpful, please share it with other autism parents you know who might benefit from these insights. And whatever you do, keep it spicy!
