Many people struggle to grasp what it means to be the parent of a child with special needs. Here’s a glimpse into that world…
We often don’t tell you the whole truth. It’s not personal; it’s not about a lack of trust or anything you’ve done wrong. It’s simply that we doubt you will fully understand, and that’s perfectly okay. We don’t expect you to… not entirely.
When a parent of a child with significant needs says, “I’m tired,” we mean something far deeper. We are beyond exhaustion, feeling a weariness that words can’t capture. The idea of self-care seems almost laughable to us—not because we dismiss your need for it, but because it may take us days to unwind enough to breathe normally again, let alone recharge our spirits after the intensity of our day-to-day lives.
Our children are our greatest treasures. We love them fiercely, driven by the need to advocate for them. We fight for their accommodations, their medications, their appointments, their rights as human beings. We might share this advocacy with you because many parents can understand the drive to fight for their children.
However, the struggles we face at home—the chaotic moments when other families are enjoying carefree days—those are the parts we keep to ourselves. They can be messy, frightening, and filled with shame. It shouldn’t be this way, but it often is, as very few truly comprehend the depth of our experience.
Imagine living in a state of constant vigilance, where resting—even for a moment—could lead to danger for our child or someone else. Maybe our child has lower functioning abilities and is at risk of falling or exploring unsafe places. Maybe they exhibit impulsive behaviors that lead to destruction. Or perhaps they experience emotional turmoil that places both themselves and others at risk. Constant anxiety about their reactions keeps us alert and, frankly, exhausted in ways that are hard to articulate.
When our children aren’t around, we still live with an underlying fear—always anticipating when they might need us or if something might go wrong. It’s a kind of exhaustion we don’t often share because we know it’s hard for others to grasp.
Yet, even if you can’t fully relate, your kindness matters. You can listen without judgment. You can offer to spend time with our kids so we can take a shower or catch a nap. A simple coffee gift card or a supportive text can make a world of difference. Just sitting in silence with us while we cry can mean everything.
This life isn’t what we envisioned, nor is it what we’d wish for anyone else. But paradoxically, we wouldn’t trade it for anything. Despite the struggles of extreme parenting—its pain, exhaustion, and challenges—we are not failing. Our children need us, no matter how many times they express frustration or anger. They will always return to us because we are their anchor.
And yes, it’s incredibly tough. It’s exhausting and maddening, but this is our life, and we’re navigating it together.
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Summary: Parenting a child with special needs is a unique and often misunderstood journey filled with challenges, exhaustion, and deep emotional connections. While the struggles are immense, the love and bond shared with these children are unparalleled. Support from friends and understanding from the community can make a significant difference in navigating this demanding yet fulfilling path.