Invisible Care Is Still Care

DJ is nine years old. He loves music, coloring, bubbles, balloons, swimming, playing games, and going to the movies with his family.

He knows his colors, letters, and numbers. He is becoming more vocal, his family has seen a significant decrease in his tantrums, and they continue working with him toward greater independence.

DJ has Level 3 autism and limited verbal communication, but his parents, Devin and Shawntel, want people to understand something important:

DJ has limited verbal communication, but he does not have limited understanding.

Sometimes behaviors that other people may see as misbehavior or attention-seeking are actually DJ’s way of communicating, regulating himself, or responding to the world around him.

When DJ was younger, he spoke very little, made limited eye contact, experienced frequent tantrums, and reached some milestones later than expected. His family chose to focus not on what others believed DJ could not do, but on helping him grow and develop in his own way.

They have watched that persistence pay off.

But supporting DJ also requires an extraordinary amount of time, supervision, flexibility, and care.

DJ needs help with communication and emotional regulation, close supervision for safety, and assistance with routines and daily activities. Finding childcare that can safely provide that level of support has been extremely difficult.

DJ has been removed from several childcare programs and denied care because providers did not have the staffing or training necessary to support his needs. His family has even had two nurses leave while providing care for him.

For Devin and Shawntel, those gaps in support have had very real consequences.

Both parents have had to leave jobs or have lost employment because of the amount of time and flexibility required to care for DJ.

They would never take back the time they have invested in their son. But they also believe families should not have to sacrifice their financial stability, careers, or education simply because their child requires a level of support that traditional childcare programs cannot provide.

That is why their family is advocating for South Carolina to take a broader look at paid family caregiving.

Some children require extensive behavioral, developmental, communication, supervision, and safety support even though they may not meet the traditional definition of being medically fragile.

The care is still real.

The responsibility is still constant.

And the effect on a family can be life-changing.

For DJ’s family, paid caregiver support could make it possible to better balance his needs with employment and education while giving them more flexibility to continue working on his communication, independence, motor skills, and overall development.

They believe South Carolina needs a system that recognizes the actual level of support a child requires and gives families a meaningful way to provide that care without being pushed into financial instability.

Devin and Shawntel are sharing DJ’s story because they want policymakers and other families to understand what that reality looks like.

And they want their story to lead to something more than awareness.

They want change.

Invisible care is still care.

A child should not have to be medically fragile before the work required to keep that child safe, supported, growing, and at home is recognized.