Being Vulnerable Online Sucks—But Here I Am Anyway

I’ve wanted to write about this for a long time. But here’s the thing—being vulnerable online sucks. I mean, really sucks. If you’ve ever put yourself out there, even a little bit, you know what I mean. The internet can be a beautiful place, a community, a space where people rally around each other. But it can also be cruel, judgmental, and filled with people who think they know your life better than you do.

Still, I’ve decided to do this. To be honest. To be real. Because, at the end of the day, there’s something bigger than my fear of vulnerability: the reality of raising a special needs child and the financial chaos that comes with it.

Why I’m Shifting My Focus to the Financial Aspects of Raising a Special Needs Child

For those of you who don’t know me (which is basically everyone), I’m a mom to a daughter with Pitt Hopkins Syndrome. If you’ve never heard of it, you’re not alone. It’s a rare genetic disorder that affects development, communication, and motor skills, among other things. My daughter is nonverbal, has global developmental delays, and requires constant care. She is also the absolute light of my life.

But let’s talk money.

Because here’s the part no one prepares you for: the financial strain of raising a child with special needs is astronomical.

• Medical bills – Even with insurance, we get hit with co-pays, out-of-network specialists, and therapies that aren’t covered.
• Therapies – Speech, occupational, physical, feeding therapy—each one essential, each one expensive.
• Adaptive equipment – A simple stroller? Nope, we need a specialized medical one. A bed? It has to be safe for a child who may have seizures. Everything is more.
• Caregiving costs – Whether it’s paying for in-home help or one parent needing to leave the workforce, the cost of care is staggering.

This isn’t just my reality—it’s the reality of so many families like mine. Yet, it’s not talked about enough. So, I’ve decided to make that my focus. I want to provide real-life insights on navigating the financial side of special needs parenting.

The US Economy Sucks, but the BS Will Always Be There

Let’s be real—the economy is a mess. Inflation is relentless, the cost of living keeps climbing, and wages aren’t keeping up. It’s hard enough for the average family to stay afloat, let alone one facing extraordinary medical expenses.

There are grants, assistance programs, Medicaid waivers, and special needs trusts—but the system is impossibly complicated. I’ve spent years figuring it out, making mistakes, and learning hard lessons. If I can make that easier for another parent, I’m going to try.

I also know that no matter what happens in the economy, the BS of writing about it isn’t something I’m interested in focusing on. The insurance battles. The endless paperwork. The fight for services. The constant advocacy. The sheer exhaustion of it all.

So yeah, I’ll touch on what’s happening in the economy. But my real goal? Helping families like mine navigate the financial side of special needs parenting—because trust me, no one hands you a guidebook for this.

What I’ll Be Covering (and Why It Matters)

I want this blog to be a space where I share the financial realities of raising a special needs child—but also where I offer solutions. Here’s what you can expect:

1. How to Access Financial Assistance

• Medicaid waivers and how to actually get them (because holy bureaucracy, Batman!).
• Grants that most people don’t know about.
• Special needs financial planning—what you need to know now.

2. Budgeting for a Special Needs Household

• How to prepare for the costs no one tells you about.
• Ways to cut expenses when your child’s needs come first.
• Navigating flexible spending accounts (FSAs) and health savings accounts (HSAs).

3. Long-Term Financial Planning for Special Needs Families

• Setting up an ABLE account and why you need one.
• Why a special needs trust is essential.
• Planning for what happens when we’re no longer here to care for our children.

4. Navigating the Education System & IEPs Without Going Broke

• Fighting for the services your child needs.
• Understanding how your school district’s funding impacts your child’s education.
• When (and how) to get an advocate or lawyer involved.

5. The Emotional and Mental Load of Special Needs Parenting

• Dealing with financial stress while raising a medically complex child.
• How to talk to family and friends about money without losing your mind.
• Managing burnout when self-care feels like a joke.

Why I’m Doing This

There was a time when I didn’t know how I was going to afford everything my daughter needed. I still don’t, sometimes. But I’ve learned a lot along the way, and if sharing that helps even one other parent, then this is worth it.

The reality is, parents like me don’t have the luxury of just “figuring it out later.” We need to plan, budget, and fight for every resource available. We have to be our child’s advocate in every sense—financially, medically, educationally. And honestly? That can be lonely as hell.

So yeah, I’m putting myself out there. Even though being vulnerable online sucks. Even though I know there will be people who judge. Because if one overwhelmed mom or dad stumbles on this blog and finds something that makes their life even slightly easier, then I’ll consider that a win.

One of These Days, I’ll Introduce Myself

I promise, I will. For now, just know that I’m a mom, an advocate, and someone who is navigating this rollercoaster right alongside you. I’m figuring things out as I go, just like everyone else.

But I’m happy to be doing this.

Let’s talk money. Let’s talk reality. Let’s make life just a little bit easier for families like ours.

Because we need all the help we can get. And honestly? We deserve it.