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Child Life Series: Owning Their Story — Teaching Self-Advocacy Skills to Children with HIE

June 18th, 2024  | Advocacy  | Child Life Resources  | News  | Resources


Every child deserves the opportunity to navigate their path and confidently own their story, but for children with HIE, their path to self-advocacy can be uniquely challenging.

That’s why Annie Gunning, Hope for HIE’s certified child life specialist, recently participated in a Q&A session aimed at equipping them with tools and strategies that will empower them to advocate for their needs and share their experiences with confidence. The session also discussed how we—as parents and caregivers—can help inspire their ownership and resilience.

Read on for access to Annie’s expertise and toolbox of resources!

What is the role of a Child Life Specialist?

In her role as the Child Life Specialist at Hope for HIE, Annie’s main objective is to help children and families navigate medicalized life. She focuses on empowering and supporting both children and their caregivers, fostering the ability to advocate for their needs while simultaneously reducing stress, pain, and anxiety. This often looks like support for patients and their families facing surgeries, tests, procedures, diagnoses, and hospitalizations by offering preparation, creating personalized coping plans, providing education, fostering creative expression, and incorporating medical play.

If you’re looking to seek the services of a Child Life Specialist in a hospital setting, check with the hospital’s healthcare team! You can reach out to the child life department, pediatric unit, or patient services to inquire about the availability and services provided by a Child Life Specialist, or you can see if your hospital has information on its website regarding the roles and contact details of its dedicated CCLS.

How can parents and caregivers successfully navigate explaining HIE and its complexities to their children so that they can better understand and communicate it to others?

  • Ask them what they know. Children are observant; they likely pick up on discussions or cues at home regarding aspects of their diagnosis. So, begin by asking your child what they already understand about the situation. Simple questions like, “Have you noticed that I have been on the phone a lot making appointments?” or “Have you noticed changes in how you feel?” can open up the dialogue.
  • Have honest, simple, and direct conversations. Use honest, brief descriptions, and provide continuous information regarding changes in health, diagnosis, or prognosis.  Now, honest information does not mean every detail is needed.  You adjust details for their age and development: while younger children do not always need as much information, older children can often digest more details and can, in return, ask further questions to lead and continue the conversation as they desire.  
  • Keep the conversation ongoing. These discussions should be ongoing and evolve. Children must receive accurate information from their parents rather than overhearing bits and pieces. Continuous, open lines of communication help build a trusting relationship, encouraging children to rely on their parents or other trusted adults for information.
  • Recognize their curiosity. If your child is asking questions, it means they want to know. Their curiosity is a positive sign and an opportunity to provide the information they seek.
  • Follow their cues. Conversations can be closed by identifying a trusted adult and acknowledging the child’s cues to end the discussion. Signs like changing the subject, looking away, or wanting to do something else indicate it might be time to pause. You can validate these cues and let them know you’ll continue the conversation when they are ready.

As many children with HIE reach school age, there’s a level of self-awareness and comparison that comes with that territory. If and when the need arises, parents may want their children to be able to explain and communicate what HIE is, its misconceptions, and their needs to others. Can you break this process down for us?

Communicating with Teachers and Educational Staff
  • Start with open communication. Begin the school year by having an open, honest discussion with your child’s teacher about HIE and any secondary diagnoses. Provide clear, ongoing updates about your child’s needs as they change.
  • Identify a trusted adult. Identify a trusted adult at school to whom your child can turn. It could be a teacher, or it could be an onsite social worker, occupational therapist, coach, or counselor. Meet with this person before the school year starts to make a plan for if and when their help is needed.
  • Help your child express their needs. Encourage your child to communicate their learning preferences and needs. Simple sentence starters, like those below, are a good way to begin:
    • “I learn best by…”
    • “I need…”
    • “I get overwhelmed with…”
    • “These things help me calm down…”
  • Create a signal for breaks. Develop a signal your child can use with their teacher when they need a break. This empowers them to manage their needs independently.

Communicating with Friends and Peers
  • Keep it simple, honest, and direct. Teach your child to communicate about HIE in a way that is simple, honest, and direct. Start by discussing what they are comfortable sharing, and help them establish those boundaries with peers.
  • Empower their choices. Encourage your child to answer questions or let them know it’s okay to say, “I’m not comfortable talking about that, but I do like to talk about…”
  • Provide sample responses. Equip your child with examples of how to respond to common questions:
Q: Why do you have to go to the doctor again?

A: (For younger children): When I was born, my brain was hurt, and I was in the hospital for a while. I have to go to the doctor to make sure that I’m healthy.”

A: (For older kids): “I have HIE, a brain injury I got at birth. So now I have to check in with the doctor to make sure I’m doing okay.”

Q: Why do you have that tube in your stomach?

A: “This is how I eat. Some kids eat with their mouths, and some have tubes in their stomachs. It doesn’t hurt, and it keeps me healthy. I can swim, play…”

A: “This is the best way for my body to get all the nutrition I need. The food goes straight to my stomach.”

Q: Why do you use those crutches/that wheelchair?

A: “These help me move so I can play. I like doing crafts, art, playing video games, going to school, etc.”

A: “I have HIE/CP, so I use these to move and play.”

  • Focus on abilities. Encourage your child to highlight what they can do and how their adaptations help them. Emphasize that everyone is different, and no two people are alike. This approach informs others and fosters your child’s positive self-image and resilience.

How can parents help their children communicate/advocate for their needs to their healthcare team?

Empowering children with HIE to communicate and advocate for their needs can greatly affect their healthcare journey. Here are some practical steps parents and caregivers can take:

  • Educate yourself first. As a parent or caregiver, ensure you fully understand the procedures, tests, and diagnoses involved in your child’s care. The more informed you are, the better you can prepare your child and equip them with the information they need to advocate for themselves.
  • Prepare before appointments. Before a medical appointment, discuss the visit with your child. Ask open-ended questions to gauge their understanding and concerns, and consider working together to compile a list of questions or topics on paper or in a note on your phone to ensure nothing is forgotten:
“We’re seeing the neurologist tomorrow. What do you want to know or talk about?”
“What questions do you have for the doctor?”
“Have you noticed any changes since your last appointment that we should discuss?”

  • Encourage direct communication. Support your child in asking questions or expressing concerns during the appointment. If they need assistance, you can help them or use tools like a communication board to facilitate their interaction. Including your child in discussions with the healthcare team reinforces their involvement and confidence.
  • Utilize a Certified Child Life Specialist (CCLS). Having a CCLS present can be invaluable. They can help explain medical information developmentally appropriately and support your child in understanding and communicating their needs.
  • Model and encourage self-advocacy. During appointments, say things like, “I’d like to share with the doctor what you told me last week about feeling tired. Can I share that, or would you like to?” This approach teaches your child how to communicate their needs effectively and fosters a sense of empowerment.

 How can we encourage our child to express their feelings and concerns about their HIE diagnosis?

  • Keep the conversation open and ongoing. Regularly engage in conversations about your child’s feelings. Choose times when your child is relaxed, such as during playtime, car rides, or while playing games. Indirect activities, especially for older children, can make it easier for them to open up.
  • Use creative expression. Encourage your child to express themselves through creative outlets like drawing, painting, writing, or music. These activities provide a safe space for them to explore and articulate their feelings.
  • Utilize books for relatable situations. Read books that feature characters with similar experiences. Discussing the characters’ stories can make it easier for your child to talk about their own feelings. Take a look at this booklist to get you started!
  • Validate their feelings. Acknowledge and validate your child’s emotions. Let them know feeling mad, sad, or confused is okay. For example, you could say: “That seems like a tough conversation. It sounds like you felt mad. It’s okay to feel mad. Do you want me to help you talk about how you can handle that conversation next time?”
  • Role-play conversations. Practice conversations through role play. This helps your child feel more confident in expressing their thoughts and emotions in real situations.

What are some effective strategies for helping children cope with the emotions surrounding their HIE diagnosis?

  • Engage in peer support. Encourage interactions with peers who understand their experiences. Support groups or playdates with other children with HIE can provide a sense of community and understanding. Stay tuned for more information about our upcoming SOAR program to build peer support and connections for HIE children in our community!
  • Find trusted adults. Ensure your child has access to trusted adults they can talk to, such as grandparents, counselors, coaches, or family friends. Sometimes, they just need another adult to talk to who is not a parent, and that’s okay.
  • Find outlets for free play. Free play is essential for emotional expression and coping. Allow your child ample time for unstructured play, which can be a therapeutic way to process their feelings.
  • Utilize music and creative expression. Incorporate music, drawing, writing, painting, and sensory play into their daily routine. These activities not only offer emotional outlets but also help in managing stress and anxiety.

Are there any developmentally appropriate resources or books you recommend for teaching children about their condition and advocacy?

  • Child Life on Call App: Take advantage of Hope for HIE’s partnership with Child Life on Call: with this, you have direct access to our Child Life Specialist, Annie, who can provide you with individualized services and access to group programs, as well as free access to the Child Life on Call app, which provides you with a range of child life specialist resources in your pocket! Simply download the app, select Hope for HIE, and enter code 048325. If you are not able to access the app, you can request all of our support resources and materials at HIE.Support instead.
  • Child Life on Call: Books and Resources: Child Life on Call offers a curated selection of books and resources designed to support children and families through medical experiences. These materials provide age-appropriate explanations and coping strategies for various medical conditions, helping children understand and manage their healthcare journey.
  • Child Life on Call Podcast: This podcast offers heartfelt and informative conversations with parents, healthcare professionals, and child life specialists about navigating the emotional and practical challenges of pediatric healthcare. Each episode provides valuable insights and support to help families cope with and thrive through medical experiences.
Episode 89: “Helping Siblings Navigate a Diagnosis.”
In this episode, we explore strategies for supporting siblings of children with medical conditions. Learn how to foster understanding, open communication, and emotional resilience within the family.

Episode 99: “Empowering Children to Advocate for Their Health”
This episode focuses on teaching children the skills to communicate their needs and advocate for themselves in healthcare settings. Discover practical tips and inspiring stories that highlight the importance of self-advocacy for children with medical conditions.

  • Piper and Enza: Piper and Enza is an interactive website that helps children and their families navigate medical experiences through engaging stories and activities. The characters, Piper and Enza, guide children through relatable scenarios, providing comfort and understanding about hospital visits, procedures, and treatments.
  • Courageous Parents Network: This resource was created by parents for parents of children with serious illnesses. It has videos, podcasts, and articles that offer practical advice, emotional support, and shared experiences from families who understand the challenges of caring for a child with complex medical needs.
  • Hope for HIE’s Comprehensive Support Network: If you want to request services or just learn more about what Child Life services can do to support you and your family, head to HIE.Support to fill out the intake form and get started!

Watch the full recording, along with our other Child Life Q&As, on Hope for HIE’s YouTube channel under the Child Life Series playlist, or download our Key Takeaway resource for an at-a-glance look at how to help your kids cope during a dental appointment or procedure!



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