14 Ways to Help When a Child Gets a Life-Altering Diagnosis

Why “What Can I Do?” Doesn’t Work

When a child receives a life-altering diagnosis, supporters constantly ask, “What can I do to help?” The intention is beautiful, but for emotionally exhausted parents, it’s one more decision to make. Instead of asking about ways to help, here are 14 specific actions that actually do—after they receive the diagnosis, during hospitalization or treatment, and in the long, forgotten months that follow.

Immediately After Diagnosis: 3 Powerful Actions

    When caregivers first hear the news, their minds race in different directions. Some reach out to family. Others research obsessively. Some withdraw entirely. Everyone processes differently.

     When we first received the news, people offered support—but we didn’t know what we needed. Looking back, here’s what actually (would have) helped, no questions required:

1) Google the disease or disorder 

     Tell them something interesting you learned from that search the next time you see them—good or bad.

    Why this works: They’re googling it too. Knowing you took time to understand makes them feel seen. You’re not relying on assumptions—you’re walking alongside them.

     Pro tip: If it is something bad that you learned, frame it empathetically and generally so that you don’t introduce new worries. Something like, “Wow, I was reading about the diagnosis and didn’t realize how many things you guys are up against.”

2) Don’t just say “I’m praying”

     Even when honest, this phrase feels like a platitude—and platitudes don’t cut it right now. Instead, tell them exactly what you’re praying. Text them the actual prayer. At midnight. If that’s when Holy Spirit brings them to mind.

     Notice you aren’t asking, “How can I pray for you?” Though that is a wonderful question, right now they need less of a mental load. You telling them how you are praying is encouraging and does not add a mental burden.

3) Contact the local association for the diagnosis

     Honestly, I have no idea how common this is, but frankly, the parents and caregivers in these groups are amazing and have more perspective, experience, and mental capacity than the people you are supporting. I suspect you would get surprisingly insightful and accurate answers if you ask what they recommend for a support person to do.

---

During Hospital Stays & Treatment: 5 practical helps

      During a hospitalization is one of the best times to think about practical ways that you might be able to lighten the load. When a child is in the hospital, schedules run tight—sometimes because there is an older kid in the picture or work schedules need to be juggled. Many times the caregivers are not spending a lot of time at home, so practical help can make those precious few minutes as restful as possible. Here are a few ideas to get you thinking in new directions for what to do when a child is hospitalized.

1) Make breakfast burritos (not dinner)

     Other people may be graciously volunteering to make dinner. Those are definitely helpful. However, I can tell you that if the family you’re supporting has to drive to early morning appointments or join the morning commute to the hospital for a while, they will adore you for making mornings that much smoother.

     Pro tip: Make them freezer-friendly. Wrap individually in foil, label with reheating instructions.

2) Ask if you can bring them coffee (and sit with them for 30 minutes)

     There’s usually a lot of waiting at the hospital. Sipping something is a natural way to pass the time. Hospital coffee… often leaves a lot to be desired. Maybe you want to pick up their favorite specialty drink or bring a decent cup from home. Even if it’s just coffee from the hospital cafeteria, it tastes better with a familiar, non-medical face. Seeing you will break up the day. If you have 30 minutes to spend sipping coffee with them (or walking the grounds), being with them where their child is will breathe life into their spirits. If the caregiver you are supporting is an introvert, chances are they would still appreciate this time investment, but being mindful of their energy status will also be greatly appreciated. 

     Pro tip: Text them earlier in the day to see if they know when rounds will be. They will want to be in the room distraction-free to get updates from the medical team.

3) Ask if you can take care of the trash and recycling bins for the week

     While this is a question, it’s a very specific yes-or-no, helpful question. Sometimes logistics cause the most stress, because you think of the issue when you are already at the hospital or morning-long appointment. So, practical, concrete offers help. 

     We had one gentleman volunteer to put up Christmas lights for us so that our home felt festive and “normal.” We only had two strands, so we ended up declining, but the thoughtfulness was incredibly encouraging and memorable.

4) Offer to fill their gas tank

     Multiple trips to the hospital add up quickly. Small gestures—meeting them at a gas station to fill their tank or Venmo-ing gas money—make an outsized impression.

5) Ask if they need bluetooth headphones or a small bluetooth speaker

     Some families may want to play quiet music while they are at the hospital or leave on for a young child, when they aren’t there. Hospitals will have different rules and this can be an expensive suggestion, so check with the family first. However, there are cost-effective options and it can be a thoughtful gift that helps the family feel like something about the foreign environment is homier and maybe even in their control. 

---

Long-Term Support: 6 Ways to Show Up When Others Disappear

     Experiences vary wildly for how communities handle families with (new) diagnoses of special needs. Sadly, there are a lot of stories of families growing consistently more isolated or forgotten over the long-haul. They don’t get to choose a different life. Hopefully, they make choices that encourage friendship and reciprocal burden-bearing, but you can choose to change their lives by remaining with them. Here are a few game-changing attitudes and missions to make a difference.

1) Accept slow responses without pressure

     Sometimes there are no more words by 10 AM. Sometimes there are 1,001 things to do, just like your life. Sometimes there are therapists at their house early in the morning and a social worker scheduled for midday. They may have accidentally marked your message “read” and forgot to circle back. Be okay with that. Your grace makes you a safe person.

2) Ask about their weekly schedule

     You aren’t offering any help here necessarily—you’re just understanding what their possibly very different schedule looks like compared to a typical family’s. It helps them know you aren’t assuming anything and that you care.

     If an event lines up to go to with them (like a basketball game) and you are remotely interested, ask to join. You show support for them and whichever kid is involved, and you have a bit of time to talk.

     If you have kids involved in similar events and can offer a ride occasionally, that can be a big help too.

3) Allow (and show) genuine tears

     Even the most stalwart person has to show emotion sometimes. Exhausted caregivers might be a bit quicker to show them, especially around people they consider close. If the person you are supporting tears up telling you something, respond compassionately and allow yourself to tear up too, if appropriate. Especially if you don’t usually feel comfortable showing emotions yourself, this can be very powerful, so long as it’s genuine.

4) Offer a listening expression

    If you’re close enough to hang out or are getting to know them and they make a statement that shocks you, do your best not to show it.

    I worked with middle schoolers for years in ministry, and one of the best pieces of advice I received early on was to show as little emotion as possible when they said something shocking. They might be subconsciously testing whether you’re a safe person. In this case, your processing friend isn’t intentionally testing, but they’ll get the feeling real quick that they’re too much and shouldn’t be so honest if you have a big reaction. Having fewer people they can be honest with will slow their healing.

5) Stay the course

     Many families feel forgotten within 3-6 months. You can change their lives by staying. Here’s how: 

     Text the caregiver on a random Tuesday—eight months after everybody stopped asking how things are going.

     Reach out about grabbing coffee one more time than you think you should.

     Sit next to them—on purpose. 

     When it is natural, encourage your kids to include their kids. You do not have to be best friends; neither do the kids. Legitimate relationships for the kid with special needs are fewer and farther between than we’d like to admit, though. Their siblings can have a tougher time, too, so when possible and not terribly inconvenient, suggest inclusion.

6) Be their safe person

     Don’t share what they tell you without permission. Don’t require them to have answers worked out. Don’t ask for progress reports. And please—never say “It’ll be okay” or “God won’t give you more than you can handle.” Those phrases feel like gut punches. Consider sharing some of your current life struggles, too. Hopefully, the relationship is a two-way street. Help them remember it is, if it’s gotten a little off track.

These 14 actions are truly helpful on practical and relational levels. If you want to understand more of what’s really happening in the hearts of parents facing tough situations, Siege of the Soul pulls back the curtain on the spiritual and emotional battle most people never see. Read Chapter 1 free as a first step in discovering the companionship that changes everything. Your support matters more than you know.

Brianne Sutton is the author of Siege of the Soul, a book for parents navigating faith, especially after an unexpected diagnosis. With a background in neuroscience and personal experience with special needs parenting challenges, Brianne writes with empathy and insight for weary souls seeking hope.