I’m Joana. I’m 38, an MS warrior, and a mom to two sparkly brain kiddos.
People ask what daily life is like, and I never quite know how to answer it in a way that makes sense unless you’ve lived it. The simplest way I can explain it is this: I am always on alert. There is a constant awareness for safety that never goes away. It doesn’t matter where we are—home, a store, a park. My brain is always scanning, always thinking ahead, always trying to prevent the next thing before it happens.
That’s just our baseline.
Hard days don’t always look the same. Some days are loud—really loud. All I hear is “No! No! NO!” on repeat, and it feels like everything is a battle. Other days are the opposite. Quiet. Too quiet. And those are the days that get me the most. Because when it’s silent, I don’t know how to help. I don’t know what’s wrong or what they need, and that feeling—of not being able to reach your own child—is heavy.
We still have to live life on those days. We still go out sometimes, because why should we have to hide?
And when we do, people notice.
My son Ian has different stimming patterns. Some you wouldn’t even catch unless you knew what to look for. Others are more obvious, especially on hard days. That’s when the stares come. The side-eyes. The quiet judgment.
I wish people understood that this is how he regulates himself. This is how he’s coping. He’s trying to adapt to a world that can feel really overwhelming and honestly, pretty scary for him.
But in our house, we don’t just sit in the hard.
We celebrate everything.
I mean everything.
Early on, Ian showed interest in laundry. Just watching it, helping a little. Now? He does his own laundry every Wednesday. On his own. And if that’s not a win, I don’t know what is. Those are the moments we hold onto. The ones people might overlook, but for us—they’re huge.
Getting support hasn’t been easy. In the beginning, I didn’t even know what I was looking for. Evaluations took forever. Waitlists were long. And the hardest part is that while you’re waiting, your child is still growing, still needing help, and time just keeps moving.
Nevada Early Intervention Services helped point me in the right direction when I felt completely lost. And when it came to IEPs… that was a whole different level of overwhelming. I love my kids’ teachers—they are amazing—but at the end of the day, they’re not my friends. And I needed someone in my corner.
Nevada PEP gave me that. They gave me an advocate who understood everything I didn’t. They helped me find my voice in rooms that felt intimidating and confusing. That changed everything for me.
Even now, I’m still figuring things out. I don’t think that ever really stops. One of the hardest parts is just knowing what to look for in the first place.
If I could create anything for families like mine, it wouldn’t just be for the kids.
It would be for the parents.
A space where we can talk honestly. Where we don’t have to explain ourselves. Where we can share what’s working, what’s not, and just breathe for a second. Because we spend so much time focusing on our kids—and we should—but we’re human too. And sometimes we need support just as much.
I think about a mom I met at my son’s sports social. I would see her every week, standing outside the door, just watching through the window. You could see it all over her face—how much she was carrying.
One day I finally asked if she was okay.
She wasn’t.
She let everything out. All of it. The struggles her son was having, the struggles she was having. We stood there for over an hour just talking.
And it reminded me of something I wish more parents knew at the beginning:
You are not alone.
There is someone out there who gets it. Who has stood exactly where you are standing. Who has felt what you’re feeling.
We just need more spaces to find each other.