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How did the idea for SOAR come about, and what inspired its creation?

The SOAR program was born out of a commitment to our community and a response to feedback from parents, many of whom expressed that their children with HIE felt alone, isolated, and disconnected from peers who shared similar health experiences. Over the years, Hope has grown support and resources for our parents, and we were inspired to extend that same support and connection to the children.

What does SOAR stand for, and how will you integrate each component into the program?

Support: Providing emotional support for all the feelings children may experience, such as sadness, anger, confusion, and happiness.

• We aim to create a safe space where kids feel comfortable expressing their emotions. Through group discussions, sharing sessions, and one-on-one interactions, we will ensure that every child knows they always have someone to talk to and listen to.

Ownership: Encouraging children to take responsibility for themselves and the things they can control.

• Activities and discussions will focus on personal responsibility, empowering children to understand and manage their actions and decisions, including practical exercises in self-care and how to manage their environment.

Advocacy: Teaching children to speak up for themselves, particularly regarding their health and medical choices.

• Children will learn the importance of advocacy through role-playing, discussions, and guest speakers. They will be encouraged to voice their opinions and experiences, fostering confidence in their ability to advocate for themselves and others.

Resilience: Highlighting the importance of bouncing back from challenges and finding strength, bravery, and courage in difficult times.

• Storytelling, sharing personal experiences of overcoming adversity, and resilience-building activities will help children recognize their inner strength and develop strategies to cope with challenges.

What are the key components of the SOAR program, and how are they designed to support children with HIE?

The SOAR program has the following components that collectively aim to create a supportive, engaging, and interactive environment where children with HIE can connect, share experiences, and build lasting friendships.

• Virtual accessibility: SOAR is a virtual program available internationally, ensuring that children worldwide can participate and benefit from the program.

• Age-specific groups: The program is divided into groups for children ages 7-12 and 13-17 to address children’s unique interests and developmental stages and allow for more focused discussions and activities tailored to each group’s needs.

• Structured commitment: The program consists of five sessions every other week. This structure encourages a consistent and manageable commitment and allows the participants to build connections over time.

• Engaging content: Each session includes weekly topics, activities, and games designed to foster connections among the children, incorporate their noted interests, and remain engaging and relevant.  

• Virtual playroom: A virtual playroom will offer interactive and choice-driven experiences for the kids. This space aims to enhance social interaction and provide a fun and safe environment for children to engage with one another.

• External collaboration: We are exploring opportunities to invite outside organizations to lead activities.

What activities and sessions can participants expect to engage in within the SOAR program?

The SOAR program is designed with a flexible agenda and schedule for each week, allowing for adjustments based on how conversations and activities evolve. Here’s a breakdown of the weekly topics and the types of activities and sessions participants can expect:

Week 1: Let’s Connect! Getting to Know Each Other

• Activities: Icebreaker games, introduction sessions, and fun activities to help participants get to know one another.
• Goals: Establish a comfortable and welcoming environment, build initial connections, and set the stage for open communication.

Week 2: Exploring Shared Experiences

• Activities: Group discussions, sharing circles, and activities highlighting common interests and experiences.
• Goals: Foster a sense of community, help participants find common ground, and build bonds based on what they have in common and what brings them together.

Week 3: Learning about Ourselves Together

• Activities: Educational sessions about HIE, personal stories, and group discussions about common frustrations and coping mechanisms.
• Goals: Increase understanding of HIE, provide a platform for sharing personal impacts, and discuss strategies for managing challenges.

Week 4: Connecting through Storytelling

• Activities: Q&A sessions, storytelling, and discussions about medical experiences, hospitalizations, and interactions with hospital staff.
• Goals: Create a safe space for expressing emotions, asking questions, and sharing stories. Discuss feelings and explore coping strategies.

Week 5: Fostering Hope and Gratitude

• Activities: Reflective discussions, gratitude exercises, and activities focused on positivity and building lasting friendships.
• Goals: End the program on a positive note, reinforce the connections made, and leave participants with feelings of hope and support for their journey ahead.

As the creator and facilitator of this program, how will you approach meeting the diverse needs of children with HIE to make it an inclusive experience?

One of our top priorities is ensuring the SOAR program is inclusive and meets the diverse needs of children with HIE. Here are some ways we intend to make this happen:

• Research and feedback-based goals: We began this process by gathering detailed information through a program interest form, where parents shared insights about their child’s interests, secondary diagnoses, available accommodations, and sensory needs. Additionally, we hosted a parent feedback session to understand their goals and thoughts about the program and to aid us in tailoring activities and sessions as inclusive and accommodating as possible.

• Individualized, multi-sensory approach: We’re committed to customizing activities to cater to different interests and abilities and making accommodations based on each child’s unique needs. This includes offering sensory-friendly options, visual aids, and adaptive technology.

• Continuous improvement: Maintaining open communication with parents and children is an important part of this process, as it allows us to gather ongoing feedback and make necessary adjustments. We recognize that the program’s first iteration may not be perfect, but we are dedicated to learning and adapting based on experiences and feedback.

• Culture of community and acceptance: Above all, we’ll ensure every child has fun, feels valued, and makes new friends. We aim to create an inclusive culture of empathy, respect, and understanding, fostering a supportive environment where every child can thrive.

What short and long-term impacts do you hope SOAR will have on its participants?

In the short term, we hope our participants will have fun, enjoy engaging with other kids who share similar experiences, and develop a sense of community and belonging.

Our long-term goal is for the children to build lasting friendships that extend beyond the five sessions we meet. Whether they stay in touch through video games, FaceTime, or communication facilitated by family members, we want them to know they have friends who understand and share their experiences. We also hope this program helps them develop the confidence to advocate for themselves in various settings, such as at the doctor’s office, school, or even in everyday situations like shopping. Ultimately, we want them to feel supported, understood, and empowered.

When will SOAR meet?

Your welcome registration packet (see below for more details) will contain detailed information about the program and instructions on how to register your child for either the Fall 2024 or Winter 2025 session. Participants will meet 5 times over the course of 10 weeks, every other Sunday.

On each of these Sundays, the 7-12 cohort will meet from 6:00 PM to 6:30 PM EST, while the 13-17 cohort will meet from 6:45 PM to 7:30 PM EST.

How do I register my child for SOAR?

Participants must sign up via the interest form by or before July 15. Upon registration, you will receive a Welcome Packet in August containing detailed information about the program and instructions on how to register your child for either the Fall 2024 or Winter 2025 session, as outlined above.

Note that the registration deadline for both the Fall and Winter cohorts is August 30, 2024. Once your child is registered for a cohort, Hope will reach out to you via email to confirm their registration.

What other helpful, important information should I know before I sign the interest form and register my child for SOAR?

• These virtual meetings aim to promote connection and peer support. Register for a cohort that allows you to attend all five sessions, as missed sessions cannot be made up.

• Each cohort will have a limited number of participants to ensure stronger connections and maximize engagement. If registration exceeds this limit, we will provide additional information and options.

• We will communicate via the email address added upon registration with weekly updates and agendas every week leading up to the session.

What can parents and caregivers do to support their children’s participation in SOAR?

Parents and caregivers play a crucial role in supporting their children’s participation in the SOAR program. Here are some tips to help ensure a smooth and enjoyable experience:

• Be available, but give space: Be there to help if needed, but try to remain outside of the camera’s view to respect the privacy of all participating children.

• Find a quiet spot: Choose a place for the session where your child won’t be interrupted by background noise or distractions.

• Check your tech: Before the call, ensure your device is charged and working properly. Test the microphone and camera to ensure they are functioning correctly.

• Be on time: Join the call on time so your child doesn’t miss anything, and allow time for any last-minute technical adjustments.

• Respect others: Encourage your child to be polite and respectful to everyone on the call, fostering a positive and inclusive environment.

• Encourage participation: Encourage your child to share ideas, ask questions, and join activities during the call. Their input is valuable and enriches everyone’s experience.

• Bathroom breaks: Make sure your child uses the bathroom before the session starts to minimize disruptions during the group.

• Be prepared: Help your child gather any sharing items or supplies they will need so they are within reach during the session. These items will be communicated in advance of each session via email.