Parenting is never simple, but when you’re raising a child with a disability, the journey comes with unique challenges, joys, and lessons. As parents of disabled children, we often find ourselves navigating not only healthcare systems and schools but also the misconceptions of society.
If you’re wondering how to better support a family raising a disabled child—or you’re simply curious about what life really looks like—here are 10 things parents of disabled children want you to know.
1. Our Children Are More Than Their Diagnosis
A diagnosis helps explain medical or developmental needs, but it doesn’t define who our children are. Callie loves archery, gaming, chocolate chip cookies, her dog Jack, the color blue, reading, watching NCIS, and getting up early. She isn’t just an amputee.
Children with disabilities have personalities, talents, and dreams just like any other child.
2. We Don’t Need Pity—We Need Support
Pity isolates. What we really need is inclusion, encouragement, and practical help. Offer to listen, include our kids (and us!) in activities, or simply treat them like any other child.
Read: How to Find Disability Support Groups & Online Communities
3. Every Disability Looks Different
No two experiences are alike. Even children with the same diagnosis can have very different abilities and challenges. Avoid assumptions and ask instead. One of the most thoughtful questions we’ve been asked is “Can you tell me more about Callie’s real life experiences?” This question is beautiful because it centers Callie as the expert in her experiences/her disability and it gives her an avenue to decide how much she wants to share about her prosthetic.
4. Inclusion Means the World to Us
When teachers, coaches, or other parents make space for our children, it sends a powerful message that they belong. Inclusion isn’t just for Callie–inclusion helps all children grow in empathy and respect.
5. Everyday Life Can Be Exhausting
Between medical appointments, therapies, and advocating at school, our schedules can be overwhelming. Our day to day involves massive amounts of planning, adaptability, and flexibility. A little understanding about our time and energy goes a long way.
6. We Celebrate Small Wins in Big Ways
What may seem like a small milestone to others—a new word, a step, a social interaction—can be a huge victory for our families. Our milestones also can appear at different times than others–we tend to run what feels like an entirely different race.
7. We Carry Invisible Grief
Many parents of disabled children grieve the life they once imagined for their child while still celebrating who their child is. Both feelings can exist at the same time. This has been the absolute hardest thing I’ve ever navigated through and the grief still sweeps me off my feet some days. I’ll never get over it but I’ve learned to live with it.
8. Our Children Teach Us Daily
Raising a disabled child reshapes how you see strength, resilience, and joy. Our kids often become our greatest teachers–Callie has most certainly taught me more than any book, podcast, movie, or professor ever could.
9. We’re Strong, But We’re Tired
I’m tired y’all. Advocacy is constant. We push for healthcare, education, and accessibility. We’re proud of our strength, but sometimes we need rest—and empathy.
10. We Want Our Kids to Be Seen and Loved
At the heart of it all, what we want most is for our children to be accepted, respected, and loved for who they are—not for who others expect them to be.
Final Thoughts
Being the parent of a disabled child is a journey filled with both challenges and incredible rewards. By understanding these truths, you can help create a world where families like ours feel supported, included, and seen.
If you’re a parent walking this path, know this: you’re not alone. And if you’re a friend, teacher, or community member, your compassion and inclusion can change everything.
Sending you love and light,
Jaime
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