Some of those lessons were practical, like figuring out how to wrangle endless paperwork. Others were deeply personal, like learning to lean on others for help. And then there were the lessons no one prepared me for: the truths that only became clear through lived experience. These are the things I wish someone had told me when I was just starting out.

Caring for a neurodivergent or disabled child isn’t just about love or patience (although there’s plenty of both). It’s about figuring out systems, finding support, and getting through those moments when you feel like you’re in way over your head. It’s a journey filled with challenges but also immense growth. And while every family’s path is unique, some universal truths can help light the way.

Caring for a neurodivergent or disabled child isn’t about doing it all. It’s about building the right support, one step at a time.

Here are the things no one tells you about caring for a neurodivergent or disabled child and why understanding them might just change everything.

1. The isolation can be real, but it doesn’t have to be permanent.

When I first started this journey, it was easy to feel like I was the only one going through it. Friends and family tried to help, but they didn’t really get it (hint: it’s really impossible to understand unless you’re living it). For a while, it felt incredibly lonely and surreal.

Over time, I found other parents who understood the challenges and the little victories. Whether through support groups or online communities, I started to build a circle of people who understood. Finding your people can take time, but it’s so worth it. 

2. You’ll need more than love.

I went into this thinking that love and determination would be enough. They weren’t. Don’t get me wrong. Love is the foundation of everything I do for my son. But love alone didn’t help me navigate IIP/IEP meetings, manage therapy schedules, or figure out how to apply for funding.

What helped me most was realizing it’s OK not to have all the answers. It’s OK to ask for help from professionals, other parents, or even a good old Google search. Love is where it starts, but building up your toolbox with knowledge, resources, and support keeps everything running.

3. Planning isn’t optional.

If you’re like me, you probably don’t love the idea of living by a calendar or checklist. Planning is your best friend when caring for a neurodivergent or disabled child. There’s too much to track, including appointments, therapies, school stuff, and all the little things that come with daily life.

At first, it felt overwhelming. But I learned that having a system, even a simple one, can take so much off your plate. Find what works for you: a planner, an app, or sticky notes on the fridge. Planning doesn’t mean you have to be rigid. It’s about making space for the things that matter most.

4. Advocating can feel like a full-time job.

No one tells you how much time you’ll spend advocating for your child. From explaining their needs to educators, therapists, and doctors to filling out forms and pushing back against systems that don’t quite fit, it’s a lot.

Sometimes, I wanted to throw in the towel (and maybe for short periods, I did). But every time I saw my son flourish because of something I fought for, it reminded me why it was worth it. Advocating gets easier with practice and with a sound support system. It’s not about being perfect but showing up and doing your best.

You don’t have to have all the answers. Caring for a neurodivergent or disabled child is a journey you take one day at a time.

5. You’ll discover strengths you didn’t know you had.

If you’d told me years ago that I’d become an expert in navigating bureaucracy or supporting my son through a difficult moment, I probably would’ve laughed. But here I am, stronger and more resourceful than ever.

Caring for my son has grounded me and taught me patience and creativity in unexpected ways. It’s not always easy, but the lessons you learn about yourself and your child are pretty amazing.

Remember that everything does not happen in one day (although it might feel like it on some days). You will get to know your child over the days and years, and things that once seemed unimaginable become possible.

6. It’s OK to need help (and to ask for it).

This one took me a while to learn. I used to think I had to do it all alone and that asking for help meant I wasn’t doing enough as a mother. But no one can do this alone.

Whether leaning on family, hiring a caregiver, or just letting someone else cook dinner once in a while, accepting help isn’t a weakness—it’s a strength. You don’t have to carry everything by yourself. Letting people in makes all the difference.

7. Paperwork will rule your life (but it doesn’t have to).

The amount of paperwork that comes with caring for a disabled child is no joke. Forms, reports, funding applications. It feels endless. I let it take over for a while, and it was exhausting.

Then, I realized I needed a system. Having everything organized can save your sanity, whether it’s a binder, a digital file, or my go-to Caregiver’s Resource Planning Group (yes, I’m biased!). It doesn’t make the paperwork disappear but makes it much easier to handle.

You don’t have to figure it all out on your own. 

Whether it’s finding your people, building systems that work for you, or just permitting yourself to ask for help, there are ways to make the load feel lighter.

That’s exactly why I created the Caregiver Resource Planning Group. It’s a space where we tackle the overwhelming parts of organizing paperwork so you can focus on what matters most: supporting your child. If you’re ready to turn the chaos into clarity, we can do this together!