There are days when it feels like I’m living in a completely different world from everyone else. No one really gets it. The playdates, the birthday parties, the invites to “just bring the kids”—they all come with this gut-wrenching reminder that our reality doesn’t look like everyone else’s. Having a child with special needs changes everything.
People don’t understand the position I’m in. It’s not that they’re unkind or don’t care, but the reality of having a child with special needs just doesn’t register in the same way for parents who don’t live it. They don’t realize how much I have to put Oakley’s needs above playdates, birthday parties, and other events. I’m constantly balancing this incredibly fine line between giving my other kids a full, exciting life, and at the same time, managing the unique challenges that come with raising Oakley. It’s hard, and I don’t think anyone fully understands just how exhausting it is to be in this position.
The truth is, the mom guilt eats me alive. I feel so guilty sometimes, like I’m somehow failing Oakley because he has a nurse helping out, or because there are things he doesn’t like that other kids do. I watch him get overwhelmed so easily—normal things like kids screaming and running around can overstimulate him, and it breaks my heart. I know my other kids just want to play and have fun, but I have to be extra careful about Oakley’s environment. It’s this constant push and pull, where I’m trying to make sure everyone’s needs are met, but I always feel like someone is missing out, and most of the time, it’s Oakley.
I also know that I need to find people in my life who understand this. Friends who appreciate the fact that I can’t always make every event or bring Oakley to things that might be too much for him. It’s tough because kids just want to be kids—they don’t understand why Oakley can’t always join in. But for Oakley, that kind of chaos isn’t fun—it’s overwhelming and sometimes unbearable. I’ve learned over time that there are friends who get it and others who, frankly, don’t. And that realization is hard.
Having a child with special needs is so incredibly unique. And until you’re in it, you really can’t understand the day-to-day challenges. It’s not just about Oakley’s diagnosis—it’s about the entire way our lives are shaped because of it. I can’t socialize with other moms in the same way. I can’t just bring my kids to a playdate and let them run wild like everyone else. I have to plan around Oakley’s needs. I have to think about what he can handle and what will be too much for him. And when your life is like that, you really do start to see which friends make space for that reality and who doesn’t.
It’s been eye-opening, and honestly, a bit isolating at times. But I’m learning that it’s okay to want a circle of friends who understand, who can accommodate Oakley and make adjustments without making me feel like I’m asking too much. It’s not easy, and I’m still figuring it out, but I know it’s what’s best for him—and for us as a family.
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