Advocating for a Medically Complex Child: What Parents Need to Hear When They’re Thrown into the Deep End

Traci Arieli
Oct 16
4 min read

Advocating for a Medically Complex Child

When Blair Young’s son Bubba was diagnosed with a rare neurological condition, she wasn’t handed a guidebook. There were no clear next steps, no roadmap; just a phone call that ended with the words, “It’s worse than we thought.”

She was left to figure it out on her own. “It felt like being dropped into the middle of the ocean with your arms and legs tied behind your back,” she said, “and being told, ‘Good luck. You’d better swim.’”

Like many parents of children with complex medical needs, Blair entered a world she never asked to join; one full of unfamiliar terminology, fragmented care, and the need for constant advocacy. But over time, she found her footing, not just to support Bubba, but also to help other families find their way.

Why You Feel Like You’re Drowning

No parent is prepared for the medical maze that follows a serious diagnosis. In Blair’s case, there was no one to walk her through what her son’s condition meant or what resources might be available. She turned to Google, where she found only sparse medical articles and more questions than answers.

Despite being enrolled in early intervention, Bubba didn’t even have a social worker until well after his diagnosis. That’s when Blair realized how serious things were. “There weren’t a lot of resources out there,” she said, “not in the community, not from the medical team.”

This kind of isolation is common. Parents of medically complex children have to learn to decode medical jargon, chase down referrals, manage insurance, and balance full-time caregiving, often while holding down a job or parenting other children. And all of it happens in survival mode, with little room to breathe, let alone plan ahead.

What No One Told You (But Should Have)

When Blair received Bubba’s diagnosis, the doctor said, “It’s worse than we thought,” and then redirected her questions to a nurse practitioner. From there, it was a series of dead ends and vague timelines. “We’ll see you in six months” was the follow-up plan.

But what Blair really needed was a team. She needed someone to help her understand the diagnosis, someone to guide the next steps, someone to simply say, “You’re not alone in this.”

Many parents are unaware that they can ask for additional help. They don’t know that they can ask for pediatric palliative care as a layer of support, not just at the end of life, but much earlier. They don’t know they can challenge the medical system, push back when they feel dismissed, or call for help when it all feels like too much.

They often don’t even know what to ask for, because no one tells them they can.

How to Advocate Effectively

Advocacy doesn’t come naturally to most parents; it’s something you build while in the trenches. For Blair, that meant learning how to speak up in medical appointments, challenge decisions when something didn’t feel right, and even change laws that impacted families like hers.

It started with small steps. Blair brought research to Individualized Education Program (IEP) meetings, made calls to legislators, and learned to clearly articulate what her son needed. Over time, she built confidence and a network. Eventually, she trained with Partners in Policymaking, a program that taught her how to navigate systems that were never built with families like hers in mind.

You don’t need a policy background to be an advocate. You need persistence. It’s okay to ask questions, to say, “That doesn’t make sense,” or “Can you explain that again?” You’re not being difficult; you’re doing your job as your child’s voice. And if a provider isn’t listening, it’s okay to find one who will.

Your Care Counts Too

In the rush to meet a child’s complex needs, parents often forget their own. But support doesn’t just belong to the child; it belongs to the entire family.

Blair shared how palliative care, when finally introduced, provided the support and clarity she needed. She gained a team that saw her, listened to her, and asked, “What do you need?” That kind of support made a difference not only in Bubba’s quality of life, but in hers.

Whether it’s leaning on a social worker, joining a peer group, or simply taking time to rest, parents deserve support. You are not just a caregiver, you’re a whole person, and your well-being matters.

Blair began this journey like so many parents do; thrown into a world she didn’t choose, trying to keep her child afloat with no map, no guide, and very little support. Through persistence, learning, and connection, she found her footing. She learned how to speak up, ask for help, and eventually, advocate for herself and others.

Blair’s story is proof that we can all be advocates. We just need to remember that it’s okay to ask for help, to speak up when something doesn’t feel right, and to take care of ourselves along the way. When parents are supported, children thrive. No one should have to swim alone.