UIC Division of Specialized Care for Children

“Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.'” – C.S. Lewis Illinois families from across the state traveled to Jacksonville on June 13-16 for the 2024 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing. The Institute is a free, multi-day program for parents of children ages 6 and under who have hearing loss. Fast friendships formed as children who are deaf or hard of hearing, their siblings and families gathered on the @Illinois School for the Deaf campus in Jacksonville. Alivia, 6 years old, attended the Institute with her mom, Ramie, and sister, Malley. Alivia has a fluctuating hearing loss. She signs in exact English and is mostly nonverbal. Malley and Ramie spoke with us about Alivia’s experience finding community at the Institute. “The first night here she was just sitting at the dinner and her head was spinning,” shared Malley. Alivia was excited to see that, “everybody has hearing aids, BAHAs, cochlear implants, everybody signs.” When asked what Alivia must have been thinking, Ramie responded, “everybody’s just like me.” Alivia is featured in a photo below holding a snow cone next to her new friend Rory, age 5. Rory has a unilateral, profound hearing loss in her left ear. We spoke with Rory’s mom, Tiffany, about Rory and Alivia’s newfound friendship. “Rory, right away, off the bat, made a best friend,” shared Tiffany. “I mean, just an instant friendship.” “She thinks Alivia has beautiful hair and they love unicorns together.” While Rory connected with Alivia and other children in her program, Tiffany made connections with other parents of deaf or hard of hearing children. “Everybody has been very willing to share their story and that just makes you feel like you're part of something,” she shared. “I'm really grateful that this exists.” The photos below show some the fast friendships formed over the four days at the 2024 Institute. Our organization is proud to support the Institute along with other sponsors. Stay tuned for more photos, stories and videos from the 2024 Institute.

A few spots are still available for a special in-person training program for the families and caregivers of children with complex medical needs happening next week in Chicago! This free two-day training will take place Wednesday, July 24, through Thursday, July 25, at the University of Illinois Chicago Simulation and Integrative Learning (SAIL) Center on the fifth floor at 1220 S. Wood St. in Chicago. Families have expressed the need for more support for parents/caregivers of children with complex medical needs. We're excited to partner with Almost Home Kids to offer this valuable training opportunity. The training will provide essential tools and knowledge to help families in their caregiving journey. The training will be from 8 a.m. to 4:30 p.m. each day. The in-depth curriculum will include: ✅ Reducing the risk of infection ✅ Skin care ✅ Daily care of the child with a tracheostomy and ventilator ✅ Activity and movement ✅ Equipment and alarms ✅ Gastrostomy care and feeding ✅ Tracheostomy basics ✅ Respiratory assessment and interventions ✅ Ventilator training with hands-on practice and more There is no cost to attend. This training is part of our efforts to use federal funding from the American Rescue Plan Act to improve support and services for families of children with complex medical needs. Find more details and the link to register at https://zurl.co/h53h.

We had a wonderful time speaking with families and watching them become more empowered during the 2024 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing. This free, multi-day program is for parents of children ages 6 and under who have hearing loss. The Institute focuses on helping families find answers, build connections and access resources all in one place. This year's event kicked off on June 13 and wrapped up on Sunday, June 16, on the Illinois School for the Deaf campus in Jacksonville.   During the Institute, participating parents and caregivers attended daily lectures by experts in the field to learn about raising a child with hearing loss.   Their children attended classrooms with experienced teachers of children who are deaf or hard of hearing. They had the opportunity to receive hearing, vision, psychological, speech, language and educational evaluations. The children also played with other children who have hearing loss. We're proud to be one of the sponsors of this incredible program for families. Here's a quick look at some of the learning and fun that took place during the 2024 Institute. Stay tuned for more!

Our Marion and Olney Regional Manager Amy Jones attended the @Egyptian Health Department's Summer Extravaganza on July 2. She had a great time: 👉 Speaking to parents, caregivers and their families 👉 Meeting other organization representatives 👉 Seeing community members having fun and enjoying spending time together The photo shows Amy standing by our Division of Specialized Care for Children (DSCC) table featuring information about our programs, pens and coloring books for children and young adults. You can see more photos on the health department's Facebook page. If you have an upcoming outreach event and would like DSCC to participate, please email us at dscc@uic.edu or call us at (800) 322-3722. We love spreading the word about how we can help!

Families often tell us about their need for more resources as they navigate caring for a child or young adult with special healthcare needs. Our Division of Specialized Care for Children (DSCC) team members are experts at finding the right services, supports and programs to meet each family's unique needs. We share these resources in several ways, including through our Resource Roundup newsletter. The roundup shows the latest additions and updates to our online Resource Directory. It includes information about important health insurance topics, financial assistance and scholarships, family support organizations, recreation opportunities and programs to help support the transition to adulthood. Check out our latest Resource Roundup at https://zurl.co/SNNJ. You can fill out this short form to receive our roundups directly at https://zurl.co/dV8l. To see our full online Resource Directory, visit https://zurl.co/i7RH. If you need help finding specific resources, you can call us at (800) 322-3722 or email dscc@uic.edu. We're here to help!

Our Mokena Regional Office got together last month for “Munch and Motivate." They munched on pizza and participated in a motivational workshop from ComPsych, entitled, “Happiness: A Key to Life Satisfaction.” The Mokena team further explored the theme of happiness while they decorated “Happiness is…” signs (pictured below). The signs feature the following messages: 🙂 Happiness is… celebrating small successes. 🙂 Happiness is… finding balance. 🙂 Happiness is… teamwork. Thank you to our Division of Specialized Care for Children (DSCC) Mokena office for sharing these helpful reminders!

We are excited to partner with Almost Home Kids to offer a special in-person training program for the families and caregivers of children with complex medical needs. This free two-day training will take place Wednesday, July 24, through Thursday, July 25, at the University of Illinois Chicago Simulation and Integrative Learning (SAIL) Center on the fifth floor at 1220 S. Wood St. in Chicago. Families have expressed the need for more support for parents/caregivers of children with complex medical needs. This training will provide essential tools and knowledge to help families in their caregiving journey. The training will be from 8 a.m. to 4:30 p.m. each day. The in-depth curriculum will include: ✅ Reducing the risk of infection ✅ Skin care ✅ Daily care of the child with a tracheostomy and ventilator ✅ Activity and movement ✅ Equipment and alarms ✅ Gastrostomy care and feeding ✅ Tracheostomy basics ✅ Respiratory assessment and interventions ✅ Ventilator training with hands-on practice and more There is no cost to attend. This training is part of our efforts to use federal funding from the American Rescue Plan Act to improve support and services for families of children with complex medical needs. Find more details and the link to register at https://zurl.co/h53h.

It takes a village to care for children and youth with special healthcare needs. Parents and caregivers must partner with many different team members — specialists, nurses, therapists, educators and so on — to help their children reach their full potential. It can be exhausting for parents to ensure everyone understands their child and their unique needs. We want to help make it easier for families to share their child’s strengths, wants, goals and more. We've created "All About Me” Pages that parents can personalize to help anyone get to know their child. These free templates highlight what works best for their child, what they like and dislike and who they are as a person. There are a variety of designs to choose from to help families capture their child’s personality and what makes them unique. The below images show just a few of the template designs you can customize. See them all at https://lnkd.in/gtjc9PYF.

Izzy Gonzalez describes her childhood as “a storm” filled with severe illness, medical trauma and frightening diagnoses. “As a child, I accepted that death was going to happen, and I just grew numb to that fact. I didn’t think I’d make it to high school,” recalled Izzy, now 20. Izzy was born with VATER syndrome, a complex condition named for the body parts it affects: vertebrae, anus, trachea, esophagus and renal (kidney). Her condition meant frequent surgeries, hospitalizations and appointments throughout her childhood. The isolation and uncertainty took a toll, especially as Izzy entered middle school. But when she accepted an invitation to join a local theater program for youth with disabilities, everything changed. “I was in a tunnel for the longest time, but I found my light. Theater is my light,” Izzy said. Today, Izzy is a college student studying theater and planning for a promising future. She left the Division of Specialized Care for Children this spring as she prepares for adulthood. Izzy recently gave a moving speech detailing her journey with disability during “That’s What She Said 2024.” The event was a live storytelling performance featuring local women from the Champaign-Urbana community. The photo below shows Izzy holding a microphone and confidently speaking to the crowd inside the Virginia Theatre during the Feb. 24 performance. Izzy read a letter to herself called “Love, Izzy.” In the letter, she speaks to her younger self at 10 years old. At that time, she was in a medically induced coma for 30 days due to a severe infection of influenza B. “Even though you have been in and out of the hospital since birth, this is the toughest moment your body will ever face.” Izzy read aloud. “I still feel in my heart the fear and doubt that we would never see a real sunset ever again. I’m here to tell you that you will wake up and you’ll see so many more sunsets. We made it a whole two decades, so much longer than we ever thought possible… In true Izzy fashion, we defy all the odds.” You can watch Izzy read her powerful letter and learn more about her path to the theater at https://lnkd.in/g4V9GaQ8. Congratulations, Izzy! We are proud of you! 👏

A 2020 survey of adults across the United States found that overall, one in three lesbian, gay, bisexual, transgender and questioning (LGBTQ+) adults self-reported having a disability. - https://lnkd.in/gdsbcP78. This Pride Month we want to spotlight some of the LGBTQ+ resources we have available in our Resource Directory. 🌈 The Trevor Project’s mission is to end suicide among LGBTQ+ young people. The project’s crisis counselors are trained to answer calls, chats, or texts from LGBTQ+ young people who reach out to its free, confidential and secure 24/7 service when they are struggling with issues such as coming out, LGBTQ+ identity, depression, and suicide. The Trevor Project also has a helpful resource on supporting LGBTQ+ young people with disabilities (pictured below). You can find the PDF at https://lnkd.in/gfZJUpy2. For more information about the Trevor Project, visit https://lnkd.in/gVd54zTx. 🌈 The Human Rights Campaign (HRC) and Human Rights Campaign Foundation fight to make equality, equity and liberation a reality for all LGBTQ+ people. The Human Rights Campaign Foundation has an important guide for educators and parent/guardians on supporting LGBTQ+ students with an Individualized Education Program (IEP) or 504 Plan. Find the guide and more information at https://lnkd.in/ggKHuH3Y. 🌈 RespectAbility is a diverse, disability-led nonprofit that works to create systemic change in how society views and values people with disabilities. It also works to advance policies and practices that empower people with disabilities to have a better future. Its mission is to fight stigmas and advance opportunities so people with disabilities can fully participate in all aspects of community. Check out RespectAbility’s collection of LGBTQ+ resources and find more information at https://lnkd.in/gkQp8bwc. Stay tuned for more resources spotlighting the intersection of the LGBTQ+ community and disability community as we celebrate #PrideMonth.