Where Do I Start?

Your care team is your starting point. Ask questions, take notes, and make sure you understand what is happening now, what comes next, and what options may be available. No question is too small to ask, and you do not have to understand everything at once. Your child’s doctors, therapists, nurses, and other providers can help you understand the road immediately in front of you.

TBI recovery can come with a lot of information: medical records, therapy notes, medications, appointments, insurance paperwork, contact information, and recommendations from different providers. Start a binder, folder, notebook, or digital system that works for you. Keeping everything in one place can make it easier to see the bigger picture and gives you something to refer back to as your child’s care changes.

You do not have to navigate this alone. Find other parents and caregivers who understand what this season can look like — the questions, the uncertainty, the small victories, and the hard days. Justus For Kids provides a Facebook support group for families affected by pediatric TBI, and as the foundation grows, we hope to build a network that also helps families connect with experienced clinicians and other resources.

The cost of recovery can add up quickly, especially when a child needs therapies or services that aren't fully covered by insurance. Find out what your insurance will cover, what it won't, and what care may cost beyond that coverage. And if there are therapies or services your child needs that insurance doesn't cover, there may be help. Justus For Kids provides financial support for eligible treatments, therapies, and other services related to TBI recovery. Knowing the costs early can help you plan and understand where additional support may be available.

Recovery from a traumatic brain injury rarely happens all at once. There may be rapid progress, slow stretches, setbacks, and milestones that once seemed impossible. Give yourself permission to focus on what is in front of you rather than trying to solve everything at once. Your child needs an advocate, but they also need a parent who has enough left in the tank to keep showing up.