You Don’t Know What You Don’t Know: What I Wish I Had Known Earlier

When I first started navigating the disability system for my children, I didn’t know how much I didn’t know. I knew my children. I knew their diagnoses, their personalities, their strengths, and the things they needed help with. What I didn’t know was how many systems those needs would eventually touch.

School. Medical care. Therapies. Insurance. Medicaid. Waiver programs. Benefits. Financial planning. Legal planning. And eventually, questions about what life might look like years from now.

I thought I was learning how to parent my children. In many ways, I was also learning an entirely new language. And I learned much of it the hard way. Over the years, I’ve learned that some resources require planning long before you need them. I’ve learned that asking questions does not make you difficult. And I’ve learned that thinking about the future is not the same thing as giving up on the present.

These are three things I wish someone had told me earlier.

1. Some things require planning before you need them

One of the hardest lessons for me to learn was that some disability resources don’t work like other services. You can’t always wait until you need something and then simply apply for it. Some programs have eligibility requirements. Some have limited funding. Some have waiting lists. Some require documentation that may be much easier to gather before you’re in the middle of a crisis. I learned this through experience.

There were things I wish I had known about years earlier, not because I could have magically made them available sooner, but because I would have approached them differently if I had understood how the system worked. That changed the way I think about planning. Planning ahead doesn’t mean you think something terrible is going to happen. It doesn’t mean you are assuming your child will need every service available. It simply means you’re learning what exists so that you have more options when you need them.

That might mean getting on a waiver interest list. Learning how Medicaid programs work. Understanding ABLE accounts or Special Needs Trusts. Keeping important records organized. Or simply learning what questions you should be asking. You don’t have to do everything today. But knowing what may take time can change what you do today.

2. Asking questions doesn’t make you difficult

There was a time when I thought being a good parent meant trusting the professionals around me and accepting that they knew more than I did. And they often did know more than I did. The doctor knew more about medicine. The therapist knew more about therapy. The school professionals knew more about their areas of expertise.

But I knew my child.

I knew what I was seeing at home. I knew what had changed. I knew what had worked before. I knew the questions that weren’t always answered by a test score, a diagnosis, or a report. I had to learn that asking another question wasn’t being difficult. Sometimes it was simply being thorough.

I learned to ask:

“Can you help me understand why?”

“What other options are there?”

“What happens if we don’t agree?”

“Is there anything else we should be considering?”

Those questions have changed the way I advocate for my children. I’ve learned that advocacy doesn’t have to mean walking into every conversation ready for a fight. Sometimes advocacy is simply being willing to pause, ask one more question, and make sure you understand the answer before moving forward. You don’t have to know the answer yourself to know that you need to ask the question.

3. Future planning doesn’t mean giving up on the present

This one took me the longest to really understand.

When you’re raising a child with a disability, it can feel uncomfortable to think too far ahead. You’re already thinking about today’s appointment, this year’s IEP, the next therapy evaluation, the medication refill, the paperwork that needs to be completed. Then someone asks you to think about ten, twenty, or thirty years from now. It can feel like too much.

I used to think future planning was something you did when you had more time, more information, or a clearer picture of what the future would look like. I’ve learned that the future doesn’t have to be clear for planning to be useful.

Planning isn’t about predicting exactly what your child’s life will look like. It’s about asking questions.

Who will know my child’s needs if I’m not the person managing everything?

What financial resources will be available?

What supports might my child need as an adult?

Who are the people who will be part of their life?

What decisions do we need to make now that could make things easier later?

Those questions aren’t about taking away hope for the present.

They’re about protecting possibilities for the future.

Sometimes, planning for the future is one of the most loving things we can do in the present.

What I Wish Someone Had Told Me

If I could go back and talk to the parent I was years ago, I would NOT tell her to learn everything. I’d tell her to slow down. I’d tell her that she doesn’t have to become an expert in Medicaid, special education law, financial planning, or disability services overnight.

I’d tell her to ask questions.

I’d tell her to learn about resources before she desperately needs them.

I’d tell her that it’s okay not to understand something the first time someone explains it.

I’d tell her that asking for help is not a sign that she’s failing.

Above all, I’d encourage her to cherish her child as they are today. This isn’t about setting boundaries or abandoning hope for their future, nor is it about holding out for them to achieve or become more. It’s simply about offering unconditional love to who they are right in this present moment.

The truth is, you don’t know what you don’t know.

There is a lot that families are expected to somehow know.

The goal isn’t to turn parents into lawyers, case managers, benefits experts, or financial planners. The goal is to give families enough information and confidence to recognize when they have a question, when they should dig a little deeper, and when it is time to ask for help.

One Small Step This Week

Don’t try to figure everything out. Pick one thing you’ve been meaning to learn more about.

Maybe it’s a benefit you’ve heard about but don’t understand. Maybe it’s a waiver program. Maybe it’s an ABLE account or Special Needs Trust. Maybe it’s simply organizing your child’s important records.

Spend 30 minutes learning. Write down your questions. Find someone who can help you answer them. You don’t have to solve the whole future this week. You just have to take one step toward understanding it.

Then spend time enjoying your child for who they are today. Find a way to meet them exactly where they are and celebrate them for who they are. 

Sometimes the most important thing we can learn isn’t the answer.

It’s learning what questions to ask.

And that’s something I wish someone had taught me much earlier.