Who I Am

My name is Roy. My son was diagnosed with autism. When he got his diagnosis, we entered a world of acronyms, waiting rooms, insurance denials, and legal documents written in a language nobody speaks. I've come to know families with all kinds of disabilities: Down syndrome, cerebral palsy, intellectual disabilities, and everything in between.

I'm a dad who spent years in waiting rooms, on hold with insurance companies, sitting in IEP meetings where eight professionals spoke a language I didn't understand, and trying to figure out what the hell our family was supposed to do next. To be fair, I had a head start on doctors' waiting rooms and insurance companies. The same son who has autism also has a very rare blood disorder, which announced itself when he was 22 months old with gallstones. His gallbladder came out the next day. In fact, when I finally broke down and filed for Medicaid when he was 6 or 7, I had a list of 15 doctors and medical facilities, many of them with the notation "also other doctors in this practice."

My degree is from the University of South Carolina, and I'm a Gamecocks fan through thick and thin, which is excellent training for dealing with state agencies: hope, heartbreak, and showing up anyway next season.

Being an engineer taught me that the bureaucracy is a system, not a mystery. It has inputs, outputs, failure modes, and undocumented behavior. A denial from the school or Medicaid is not a personal failure; it's the system behaving exactly as designed. Once you know the spec (the actual regulation, not the caseworker's opinion), you can debug it like you'd debug code: reproduce the failure, isolate the cause, read the spec, and escalate with evidence. Specs beat opinions. 42 CFR 441 is the spec. A caseworker's "we don't cover that" is an opinion. That shift in thinking kills parent shame and gets results.

One thing to know up front: all of my experience is in South Carolina. The federal material translates to anybody, anywhere, because federal law is federal law. The state material may not. Even Medicaid, which people think of as one federal program, differs from state to state, because it is administered at the state level. Each state writes its own rules, its own waivers, and its own waiting lists. So treat my state-level details as an example of how this can work, not a promise of how it works where you live. Start with Your State and verify locally.

I was also extremely lucky. I was chosen for a ten month training program called Partners in Policymaking, or PIP: one weekend a month, ten months straight. It teaches you how to advocate effectively for individuals with disabilities (or, as my son prefers to say, different abilities). The class was great and I learned a great deal.

But the biggest thing I got out of it was not the curriculum. It was the connections, many of them lifelong. Because of that class, we vacationed every year with three other families who also had children with autism. Six parents, nine children, five of them with autism. It was great. We all understood the odd behaviors and nobody had to apologize to anyone about them. All four of the parents who took that class went on to serve on the board of directors of the South Carolina Autism Society.

Why I Made This Site

Every time I learned something useful (a federal law, a program we qualified for, a stupid mistake to avoid), I'd mention it to another parent and they'd say, "Nobody told me this." Over and over. Nobody told them about Early Intervention. Nobody explained the difference between SSI and SSDI. Nobody warned them about Medicaid waitlists. Nobody said that schools are required to tell you about your legal rights, in writing, and that you could actually push back.

The information exists. It's buried in government websites that look like they haven't been updated since 1997. It's scattered across PDFs, hidden in footnotes of federal regulations, and locked behind parent forums you have to find first.

This site exists to answer the questions I wish someone had answered for me in the first month after diagnosis: What actually happens now? What do I need to do? What's the trap I'm about to walk into?

How This Site Works

Each page is written from first-person experience, grounded in actual law and real program names, with links to official sources. No fluff. Grief is real. Waiting lists are real. Insurance denials are real. So is the actual support that exists once you know where to look. This site is that conversation, written down.

What This Site Is NOT

This is not medical advice. I'm not a doctor. Don't use this site to diagnose, treat, or cure anything. If your kid is sick or you need medical decisions, talk to a doctor.

This is not legal advice. I'm not a lawyer. Don't use this site to make legal decisions (like guardianship, special education due process, or benefits appeals). Talk to a lawyer who specializes in special education or disability law. Some lawyers in this field work on contingency and will fight the school for free if they win.

This site is not affiliated with any government agency, school district, insurance company, or therapy provider. I'm not selling anything. There are no affiliate links. I don't profit from you choosing one provider over another or one program over another.

This site is not comprehensive. Every state is different. Every child is different. Every family situation is different. I've tried to cover the basics, but "basics" plus your actual situation might equal something different. Use this as a starting point, not the gospel.

This is not grief counseling. I can't help you process your diagnosis trauma. That's for a therapist, your partner, other parents who get it, or all three. What I can do is help you navigate the bureaucratic nightmare while you process the emotional one.

What This Site IS

A field guide written by someone who's been in the waiting room and lived to tell the tale. Information is accurate or linked to the source. Satire punches up at bureaucracies and broken systems, never at kids, families, grief, or disability. Grief and love are played straight. Links go to official government websites, not to therapy providers I'm recommending.

How to Use This Site

1. Start with the question that brought you here: "My kid just got diagnosed" (go to Getting Diagnosed), "My kid is under 3" (go to Early Intervention), "We're starting school" (go to School & IEPs), or "I need money" (go to Paying for Care).
2. Each page is self-contained but also links to related pages. Read what's relevant. Skip what isn't.
3. When you see a underlined term, hover or click to see a definition. These definitions are also in the Glossary.
4. Use the By State section to find your state's specific programs and contacts.
5. If you find an error (broken link, outdated information), please let me know. This site needs to be accurate.

A Note on Disability

I write about disability as a real thing, not as tragedy or inspiration. Kids with disabilities are just kids. They have the same rights, the same dignity, and the same need for support as anyone else. Some disabilities are more obvious than others. Some involve pain or medical complexity. Some involve social exclusion or systemic oppression. All of them deserve honesty and support, not pity or inspiration porn.

I don't think having a child with a disability is a blessing. I think having a child is a blessing, and if that child has a disability, my job is to help them live a good life with support they need. That's what this site is about.

Final Thing

If you're here because your kid just got diagnosed and you're terrified: that feeling is normal. You're going to be okay. Your kid is going to be okay. The system is broken and frustrating and there's a lot of paperwork, but there are also real people trying to help, and real programs that actually work, and you can figure this out.

You're not alone in the waiting room anymore.