Navigating Systems

You're sitting in your car on your lunch break — not eating, not resting — on hold with insurance, hoping you get a real person before you have to go back inside.

That's the reality no one tells you about when your child has Prader-Willi Syndrome. It's not just the caregiving. It's the second full-time job of fighting systems that weren't built with your family in mind — insurance denials, IEP meetings, waiver programs, providers who still don't quite get it.

In this episode, Tanya gets into all of it. What it actually looks like to navigate schools, insurance, and support services when your child has complex needs. The wins that took years. The losses that still sting. And what she wishes every parent new to this journey knew before walking into their first meeting.

This one's for every caregiver who has ever hung up the phone and just sat there for a minute before going back in.

PWS Unfiltered is a podcast for families living the unfiltered reality of Prader-Willi Syndrome. New episodes drop on the 1st and 15th.

Transcript

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I remember sitting in my car in the parking lot at work on lunch, 12 minutes left, on hold with the insurance company for the third time that week. And I remember thinking, I'm so tired. Not sleepy tired, the other kind. The kind that doesn't go away after a good night's sleep. And when the hold music cut out and someone finally picked up, I sat up straight, took a breath, and started advocating again, because that's what we do. Welcome back to PWS Unfiltered. I'm your host, Tanya. Today's episode is for the parent who just got the diagnosis and is staring at a pile of paperwork wondering where to even start. It's for the caregiver who has been fighting insurance for months. It's for the parent who is walking into their first IEP meeting and has no idea what to ask for. This one is practical. This one is real. And this one is going to save you some of the trial and error I went through the hard way. I've been that parent at all three of those tables, and nobody handed me a roadmap. So today I'm going to try to be that for somebody else. Let's start with therapies, because this is where so many of us hit our first wall. Most therapies require referrals. That's the first piece. You're not just going to call a speech therapist and get in. You need your insurance to allow it, you need a referral from a provider, and then you need to find someone who has availability. Each one of those steps can take weeks, sometimes months. And I want to say something before we go any further. If a provider doesn't feel right, find another one. That goes for therapists, doctors, specialists, anyone on your team. You are not stuck with someone who doesn't get it. Keep looking. When Aidan was still a baby and we didn't have his diagnosis yet, we got him into feeding therapy pretty quickly, but we still had to drive 25 minutes each way every single week. He eventually graduated from that and needed OT and PT. We got the evaluations done, and then we waited. Months at a time just to find an opening that fit our schedule. Then speech came, and that one was three months just to get the evaluation. Three months. I called every place I could find. Same story everywhere. Some places weren't even taking new patients because they were so booked up. And the whole time I'm just watching Aiden and thinking, he needs this now. Not in three months, now. But that's not how the system works. When we moved to Minnesota, we still had to establish with the new primary, wait for insurance benefits to kick in, and restart the whole process. It was faster than Arizona, but it was still a month of waiting just to schedule. And that's considered good. Now let's talk about the financial piece, because this part does not get talked about enough. Even with pretty good insurance, we were paying $50 per therapy session, and he needed three different therapies a week. That's $150 a week, $600 a month, just for therapies, before co-pays for specialists, before medications, before anything else. And insurance only covers a certain number of sessions per year. So you're watching the clock. You're in the middle of a session, and somewhere in the back of your mind you're thinking, we have 11 sessions left before we hit the cap. And then what? Do you spread them out and go less frequently? Do you try to pay out of pocket? Do you just stop? It is not a call you should have to make. And here's something I want every family to hear. I don't think a lot of therapists fully get PWS, and that's not a dig at therapist, it's a reality. PWS is still not widely understood, so you are going to end up educating them during evaluations. You are going to be the expert in the room even when you don't want to be. Even when you are exhausted and you just want someone else to carry it for a minute. You are still going to be the one explaining the condition to the person who is supposed to be treating it. The dynamic is overwhelming. You have to cross every T and dot every I. You have to advocate. Advocate like our kids depend on it because they do. Call, blow people up, bother them, be annoying. And I want to name one more thing. In Arizona, we didn't qualify for state services because we made too much. And Aiden was in this weird age gap where he didn't need things like full-time home health care. Most of the questions we were asked were designed for infants to older kids. Aiden didn't fit neatly into either box. So the answer was no. And I remember sitting at the table asking myself, what do you do with families like us? The ones who aren't poor enough for support but aren't wealthy enough to absorb the costs? There's no good answer. That gap is real and it is infuriating. But keep pushing, there are still options, they are just harder to find. Let's talk about insurance. Insurance is its own full-time job when you have a child with PWS, and I say that as someone who has also had a full-time job. You are constantly navigating what's covered and what isn't, what needs prior authorization and what doesn't, medications, therapies, specialists, primary care visits, it all stacks up. And here's the part that will always get me. Insurance companies trying to tell us what is best for our kids, even though they do not have a medical degree. I mean really. A doctor who has been treating your child says they need this, a specialist who has studied this condition says they need this, and some person on the other end of a phone reading from a policy document says no. And their no carries as much weight as a doctor's yes. That is wild to me. I remember getting a denial letter for one of Aiden's therapies, and I'd been waiting for this authorization to come through for weeks. I opened the letter and I just sat there. Because it wasn't just a piece of paper. It was another month of delay. It was another conversation I had to have with his provider. It was figuring out whether we paid out of pocket while we waited, or whether we just paused and hope he didn't regress. And I was so tired. I didn't want to fight. I just wanted to take care of my kid. But I picked up the phone anyways. Between specialists, primary care, therapies, and medications, the financial weight is real. Even with good insurance, even with a household that is working hard, it adds up and it doesn't stop. And I want to name that because I think a lot of families are quietly drowning in this, and I don't feel like they can say it out loud. You are not failing. The system is really hard. Here's what I've learned. Appeals are worth it. They are an extra step. They can be lengthy, but they are worth it. That denial I told you about, I filed an appeal. I got Aiden's doctor to write a letter. I wrote my own letter. I documented everything, and it was approved. It took almost three weeks and a lot of follow-up calls, but it was approved. If insurance denies something your child needs, do not accept that as the final answer. File the appeal. Your doctor can help. Write the letter, make the calls, and keep a record of every single conversation, who you talk to, what time, what they said, and get secondary insurance if you can afford it, or if you qualify for state secondary coverage, it's worth looking into. It can catch some of what primary insurance leaves behind. Ask your HR department, ask your state's Medicaid office, ask your child specialists if they know of any coverage programs specific to rare conditions. Don't assume you don't qualify until you've actually checked. And my biggest piece of advice: pick up the phone, email, call, keep calling. Every day if you have the time. You have to keep showing up even when the system hopes you'll quit. Because a lot of people do quit. And the system is counting on that. Don't give it the satisfaction. I want to take a minute to talk about something I don't think we talk about enough. What it's like to navigate all of this while holding down a job. When I had a full-time job, I was lucky that my workplace was understanding for the most part. But I want to be really honest. Not every family has that. Not every job is lenient. Not every employer cares about what is happening outside of the hours you are on the clock. And I have so much compassion for families who are fighting this fight while also fighting for flexibility at work. Because here is what that looks like in real life. My lunch break was not a break. I would sit in my car because I needed the privacy and I didn't want to be overheard. And I would spend 20 to 25 minutes on hold with the insurance company, or leaving a voicemail for the third time that week at the therapy office, or trying to get the school on the phone before they went back into afternoon sessions. And when my break was over, I'd walk back in and try to shift back into work mode while still mentally sitting in that parking lot trying to solve the thing I hadn't solved yet. You never actually get to let your guard down. You are working, parenting, advocating, researching, and fighting systems, often all at the same time. And when you get home at the end of the day, the second shift starts, the emails, the paperwork, the appointment scheduling, the research rabbit hole you fell into at midnight because you needed to understand what a specific therapy code meant before your next call with insurance. And I want to say this directly to the parents who are doing this completely alone. The single parents, the families where there is no partner to hand things off to at the end of the day, where you are the only person making these calls, navigating these systems, showing up to these appointments. I see you. I don't have words adequate enough for what you are caring, but I see you. When we moved to Minnesota, I tried to find a work from home job with more flexibility. It didn't work out the way I had hoped. So I eventually went part-time. That was a hard transition, financially and emotionally. There was a piece of my professional identity that I had to grieve a little. You spend years building a career, and then the circumstances of your life ask you to make a different choice, and you make it. But it costs something. I think we don't always give ourselves permission to acknowledge what it costs. And I want to acknowledge not every family can go part-time. Not every family can afford to reduce hours. Not every household has a partner whose income can absorb the difference. If you are in full-time work right now and you feel like you are drowning trying to hold all of this together, I see you. You are not failing, you are doing something extraordinarily hard, and I wish the systems we are navigating made more room for the fact that the people using them are also trying to keep a roof over their families' heads. So if you take one thing from this part, give yourself grace, this is not sustainable by design, and you are not weak for struggling with it. Now let's get into school. When Aiden first started pre-K in Arizona, he was placed in a special education classroom with an IEP. His first teacher was a rock star. She cared, she had patience, she had passion for her students. Aiden loved it. He thrived. And I remember thinking, okay, we found our people. This is going to be okay. Then the next year started and he got a new teacher. That's where I learned that you have to stay involved. You have to advocate every single day. Because I genuinely feel that she needed to pick a different career. She seemed overstimulated, she didn't have patience, and I was on high alert every single morning sending Aiden to school wondering what I was going to hear at pickup. And almost every day it was negative feedback. And here's what's hard about that. The feedback wasn't just hard to hear as a parent. It was what that feedback was doing to Aiden. He started coming home different, quieter, more anxious before school mornings. A kid who had loved going to school started having meltdowns at the door. And I knew it wasn't just PWS. I knew some of it was that classroom. But proving that and doing something about it are two very different things. I started timestamping serious incidents and emails. I wish that had resulted in something different, but it didn't. It was a nightmare. And the worst part, watching how it affected Aiden and his own internal struggles. We tried to pull Aiden from that school, but we found out we had to stay within our homeschool based on our address. So we were stuck. And that is a thing parents need to know. Your options can be more limited than you think. Know your rights, but also know the boundaries of those rights. Because sometimes the system has you and you have to work within it while you keep pushing. The only reason I got even a little breath of fresh air during that time was because of his therapist and his pre-K psychologist at that school. They loved Daydon and he loved them. I don't know if they will ever know the impact they had on him. I genuinely do not think I have the words to fully express how grateful I still am for them. Those people kept me from completely falling apart during one of the hardest stretches we've had. Then we moved to Minnesota, and honestly, the school change alone was one of the best decisions we have ever made. The district we are in now is phenomenal. His last IEP meeting, they took their time, they gave us real feedback, they listened, they actually heard us. They came prepared, they knew his file, they asked questions that showed they had thought about him specifically, not just students with IEPs in general. That difference is everything. I'm nervous about the transition to kindergarten because every change brings new unknowns. A new teacher, a new classroom, a new routine. For a kid with PWS, routine disruption is not a small thing. It's something we have to actively plan for and communicate. So even in a great district, every transition is something I approach with a little bit of held breath. If you are in the same place, knowing the foundation is good, but still scared about what's next, I understand that completely. Here's what I wish I had known walking into my first IEP meeting. First, you have the right to bring someone with you, an advocate, a family member, another parent who has been through it. You don't have to walk in alone. There are advocacy organizations that will help you prepare, and some will even attend with you. PWSA USA is a good starting point. There are also state-level parent advocacy networks that offer free support. Second, be specific. The more specific you are in that document, the better protected your child is. Lean on your support system. If something feels off, trust that filling. If you need time to think, take the time. You are allowed to say, I need to review this before I sign. That is your right, use it. If I could leave every family with one thing after this episode, it would be this. You are going to have to be your child's advocate in every single one of these systems. And it is going to feel exhausting. It is going to feel unfair because it is. But every call you make, every appeal you file, every IEP you fight for, every therapist you refuse to give up looking for, that matters. Your child is depending on you and you are showing up even when you feel like you have nothing left. And I want to say this too. It's okay to rest. It's okay to not make three phone calls today. It's okay to take a breath. Advocacy is a marathon. You are allowed to pace yourself. You are allowed to be human. So whether you are the parent still staring at that pile of paperwork, or you are deep in the middle of an insurance appeal, or you are sitting in the parking lot before your first IEP meeting trying to remember everything you wanted to say. This episode was for you. I hope something in it made the road feel a little less impossible. Thank you for being here today. If this episode helped you, share it with a family who is just starting out or a family who is deep in the fight right now. They need to know they are not alone. I'll see you next episode where we're gonna talk about the reality around food with this condition. Until next time, you are not alone.