When Grief Looks Different: Navigating Loss with a Child Who Has Developmental Disabilities
This series is dedicated to a young boy named Kellan—a beautiful soul with Down syndrome and autism—who recently lost his mama. It’s also for every parent, caregiver, and educator trying to make sense of grief in children with developmental disabilities.
When you’re parenting through loss, nothing about it is simple. But when your child has a disability, everything changes. The way they process grief. The way they communicate it. The way they feel it, deeply, even if they can't express it.
This is our story. It's Tessa's story. And maybe it’s your story, too.
In these four parts, I’ll walk you through what it was like to lose my husband—Tessa’s daddy—and how we navigated the heartbreak, the confusion, the planning, the rejection, and the moments of unexpected grace that came along the way.
This is grief—but through a different lens.
This is grief—when your child’s world doesn't work the way the world expects.
This is grief—when love and loss meet developmental disabilities.
What Grief Looks Like When Your Child Has Down Syndrome and Autism
When Misty’s husband was diagnosed with stage 4 lung cancer, she was thrust into the unimaginable—parenting a child with Down syndrome and autism while preparing to say goodbye. This opening chapter explores the emotional impact of sudden loss, the power of a trusted support circle, and why planning ahead is critical for families raising children with developmental disabilities.
Part 2 - Coming Soon
When They Can’t Say the Words, But Feel Everything
Children with developmental disabilities often grieve in ways the world doesn't expect. In this chapter, Misty shares how her daughter Tessa processed the loss of her father—not with words, but through delayed reactions, empathy, and quiet moments of sadness. This post explores how grief manifests in children with Down syndrome and autism, and why emotional support must look different.
Part 3 - Coming Soon
The Power of the Tribe
When you’re raising a child with special needs, having the right people around you can mean the difference between surviving and collapsing. This part of the series dives into the importance of building a trusted tribe—people who truly understand your child—and how rejection from others can leave lasting scars. Misty shares what it means to lean on community when you're parenting through grief.
Part 4 - Coming Soon
Hope Isn’t a Plan
Love alone isn’t enough. In this final chapter, Misty explains how early legal planning, life insurance, and a strong support system helped her daughter continue thriving after losing her father. With practical insights and sobering statistics, this post urges parents of children with developmental disabilities to take real action—before it’s too late.
