Acting allowed Izzy Gonzalez to break out of her shell and thrive while living with multiple disabilities

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 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.

Izzy stood on stage during the Feb. 24 performance and 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 in full in the video below:

Fear, doubt and isolation

Izzy was born with no anus and only one kidney, which grew bigger to compensate for her kidney that didn’t develop. She also has scoliosis and is missing some of her vertebrae. Doctors initially told her family she’d never be able to walk.

Izzy was also born with a tracheoesophageal fistula (TEF), which meant there was an abnormal connection, or “tunnel” as Izzy calls it, between her esophagus and trachea (windpipe). She experienced frequent vomiting, acid reflux and difficulty breathing until her TEF was officially diagnosed at age 12.

Izzy’s family moved to central Illinois from California after her birth so she could receive treatment at Carle Foundation Hospital in Urbana.

She enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) in 2005.

DSCC helped coordinate Izzy’s medical appointments among many different specialists and arranged travel and hotel stays for her family.

Izzy underwent several major surgeries to correct her scoliosis and TEF, among others. She also experienced severe illnesses due to her weakened immune system.

“They knew my name in the pediatric ward and that was just the life I was living,” Izzy recalled.

This life meant Izzy missed many days of school, including all of sixth grade, due to medical reasons. The time away from her peers made it hard for Izzy to connect socially.

“I was gone from school so much, people in middle school thought I was a new kid,” Izzy said. “I was so much of an introvert because I didn’t know how to talk to anyone. I was that person who specifically chose to sit by myself at a lunch table at the back of a lunchroom.”

One day, Izzy’s mom asked if she’d like to try the Champaign Urbana Theatre Company’s Penguin Project.

The Penguin Project is a national program that provides a supportive environment for children with disabilities to explore their creative talents in a community theater experience. Youth with disabilities are the artists and “peer mentors” without disabilities join them on stage.

Not knowing what she was agreeing to, Izzy replied “yes.”

“I was bored with life so much that I was questioning my existence. I was questioning why I was here,” Izzy said, noting she had fallen into a deep depression and thought about self-harm.

Izzy felt she had nothing to lose.

“No limits”

The Penguin Project brought unexpected hope and unlocked a new passion and excitement within her.

“When I fell into The Penguin Project, I thought, ‘This is fun! I get to socialize with people and meet people like me,’” she said. “It’s an amazing program. You get to socialize with so many people that you wouldn’t have met otherwise, and that’s when I really found my people.”

Izzy was 12 when she joined The Penguin Project and has stayed involved with it ever since.

“Theater essentially saved my life and altered the course of my entire life. It altered the course of my future,” she said. “I got to enjoy life. I got to enjoy existing. I remember that first year, I was just enjoying being alive and that’s something I could never repay back in a million years. And that’s why I love The Penguin Project so much.”

Izzy started to act in other local theater productions. She calls being on stage and playing different characters a fun and freeing experience.

“In the theater, we get to be whatever we want. There are no limits,” she said.

Izzy received a nomination for a best up and coming actor award from the Champaign Urbana Theatre Company for her 2017 portrayal of Wally Webb in the play “Our Town.”

Izzy also participated in the Illinois Miss Amazing program. Miss Amazing provides opportunities for girls and women with disabilities to share their abilities and ambitions. In 2018, she became the Illinois Miss Amazing Junior Teen Queen.

As she prepared to graduate high school, Izzy knew she wanted to pursue theater in college.

She decided to attend Parkland College in Champaign, where she is studying theater arts and focusing on acting. Izzy recently completed her fourth semester and says she’s gained invaluable experience with the different theater production roles.

She hopes to eventually transfer to Millikin University in Decatur and earn her Bachelor of Fine Arts in theater. She also wants to become a makeup artist to help financially support her acting goals.

“A bright future”

Izzy currently lives at home with her parents due to her medical needs. She is working on becoming more independent so she can live on her own. After 19 years as a DSCC participant, she left the program in March 2024 as she prepares to receive adult services.

As she enters adulthood, Izzy enjoys raising awareness and advocating for people with disabilities.

She encourages other youth with disabilities and special healthcare needs to have fun as much as possible.

“That’s what always got me through my hospital stays. I had fun. I knew I was being watched medically, and I knew I was going through sicknesses, but I still had fun. I was still a child,” she said “And I’d say to the parents, make it fun for your child, just to take their minds off of what’s happening. Give them activities to do.”

Izzy also stresses the importance of a positive mindset.

“If you have a pessimistic mentality than nothing good is going to come of that, and you’ll just feel bad the entire time. If you have a more optimistic mentality, you’ll be able to cope better,” she said. “Always try to live in the moment, no matter what the situation is.”

As Izzy looks back on the “storm” of her childhood, she is thankful for the support she’s received along the way from her parents and her sister as well as DSCC.

She’s also incredibly proud of how far she’s come.

As she eloquently spoke to her 10-year-old self in her “Love, Izzy” letter: “One thing you’ll find out is the word ‘failure’ doesn’t seem to be in our medical vocabulary…” Izzy said.

“I can’t wait for you to experience everything that’s to come, and I can’t wait to experience what’s to come. I know that we will have a bright future.”

Todd Williams received Division of Specialized Care for Children (DSCC) support growing up and now leads the Evaluation Center at the Illinois School for the Deaf

Todd Williams has come full circle.

Todd, 53, grew up with hearing loss that wasn’t diagnosed until late in his childhood. He enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) and a new world of access opened to him.

That access and support led him to a career that’s opening doors and opportunities for countless other Illinois families of children who are deaf or hard of hearing.

Todd is currently the Evaluation Center Director at the Illinois School for the Deaf (ISD). In this role, he helps school children with hearing impairments all over Illinois receive the right assessment, enrichment and intervention services.

Todd also speaks with parents during the annual Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing on the ISD campus in Jacksonville each June. The Institute is a partnership of DSCC, the Illinois School for the Deaf and other sponsors. It provides valuable education, resources and connections to families of young children with hearing loss in Illinois.

“My involvement with Parent Institute is just to be an advocate and tell them… ‘I’m a client of this program. So, please take advantage of the services that are out there,’” he said.

“The services don’t just come to you. You have to make an effort.”

Todd explains more about how he helps empower and inspire Institute families in the video below:

Todd says he is thankful for the support his family received when they needed it most.

He was in the sixth grade when his language arts teacher noticed something was “off” and mentioned it to his mother. 

“Sometimes you don’t know what you don’t know until you do,” Todd said. “Once my hearing was tested, they couldn’t figure out why I was functioning so well! I remember being able to read lips. Even though I might not hear the bell ring, I could see what the other kids were doing and follow along.”

Todd said his hearing loss was mild to moderate at that time, and school wasn’t a struggle.

He was then diagnosed with bilateral sensorineural hearing loss, a condition where there is damage to the tiny hair cells in the inner ear (known as stereocilia) or to the nerve pathways that lead from your inner ear to the brain.

“We don’t know what caused my hearing loss, but I was sick a lot as a young child with allergies and ear infections,” Todd said. “I must have had hearing at some point because I know what letters and other sounds should sound like, so my speech wasn’t greatly impacted.”

He attended public school during the recession of the 1980s, and money was tight for his family as they started researching how to best support his hearing loss.

“The economic situation was terrible, and probably everybody in town was getting or needed some sort of assistance,” Todd explained.

His mom attended a town meeting about available services, and a woman told her about DSCC.

“That was back when DSCC was called the Division of Services for Crippled Children,” Todd said. “Thankfully, the name has changed, inclusion is growing, and the woman impressed on my mom that DSCC could help.”

For 87 years, DSCC has partnered with Illinois families to help connect children with special healthcare needs – including hearing loss – to the services and resources necessary to reach their full potential.

Thanks to DSCC, Todd began to see audiologists and providers who could help. He also received financial support for the cost of his first hearing aid. (DSCC can provide financial assistance for some eligible medical expenses when families meet certain income guidelines.)

“Having my hearing aid was access. We would have found the money somewhere, but it would have been an incredible hardship,” Todd said. “It was no coincidence that things fell in line. With DSCC it was amazing, perfect timing. That’s the beauty of it.”

Later, when his family moved, DSCC went with them.

“No matter where you go in Illinois, DSCC is there,” Todd said. “They were there to help my family with appointments and hearing aids. I got a second hearing aid when I was a sophomore and getting closer to aging out of the program.”

Todd later started planning for college. He took a placement test at John A. Logan Community College in Carterville. While there, a gentleman saw his hearing aids and gave him contact information for the Division of Rehabilitation Services (DRS or DORS) program.

“DORS helps individuals with disabilities become independent, productive citizens. They helped me through school, and I got my master’s at no cost,” Todd said.

He attended Illinois State University and earned a bachelor’s degree in teaching deaf and hard-of-hearing students. He later earned his master’s degree in counseling as well.

Over the years, Todd has worked in education and counseling and served as a deaf/hard of hearing consultant for the state. He also progressed from being hard of hearing to deaf. Todd now has cochlear implants, which unlocked a new world of sounds for him.

He became ISD’s Evaluation Center Director in December 2020. He says he enjoys empowering families and serving as a role model for youth with hearing loss.

“I had a little kid come up to me in the dining hall who was all excited because I had two implants just like him,” Todd said. “So, there’s the role model part, too, which is important for our kids to see that adults do walk around with these (implants), and they are successful.”

Todd encourages families of young children with hearing loss to attend the Institute and learn how ISD, DSCC and other state programs can benefit their children and families.

“Don’t miss out on a chance when you can really gain the most comprehensive evaluation for your child, and the resource list will be phenomenal,” Todd said.

“You have the ability to ask questions, to get questions answered that maybe you’re not feeling comfortable with asking in another setting. That’s what we’re here for. We’re here to answer questions and become a resource for you so the programing for your child can be the best that it can be. That’s our goal.”

An opportunity for youth to help improve transition support and make a difference!

Youth with special healthcare needs should have a big role in shaping their future and helping improve support for others.

We want to hear from teens and young adults about what’s important and helpful to them as they plan for the future. Our new Youth Advisory Council is a great opportunity for them to share their input and make a difference.

The Youth Advisory Council (YAC) is a diverse, youth-driven group that aims to develop more youth-focused ways to help individuals and families with transition planning, resources and services.

The YAC’s goal is to support positive outcomes in adulthood for all Illinois youth with special healthcare needs in the areas of:

• Employment

• Health care

• Independence

• Quality of life

The YAC’s role is to:

• Bring a different and personal perspective on issues important to youth.
  
• Partner with the Division of Specialized Care for Children (DSCC) to help develop more youth-focused methods to enhance care coordination.
  
• Develop strategies to improve communication between youth/young adults and older adults.

Members participate in four virtual meetings per year.

Who is Eligible to Join the YAC?

The YAC is open to youth with special healthcare needs who are:

• Ages 15 to 24

• Living in Illinois

• Planning for the transition to adulthood in the areas of education, health care, employment and home and community-based support

Youth do not have to be a DSCC participant to join the council.

How to Join and Learn More

Members must complete an online application to join. (The application is also available in Spanish.)

Visit our Youth Advisory Council page for more information and answers to frequently asked questions.

You can also see the YAC flyer for more details:

• YAC flyer in English

• YAC flyer in Spanish

If you have questions, please contact Claire Cook, DSCC’s Title V Program Transition Specialist, at clairer3@uic.edu or (800) 322-3722, ext. 21812.

Programs offering free tax preparation and help filing tax returns are available to eligible individuals and families across Illinois.

People with disabilities, families with low income, taxpayers who speak limited English, and individuals over the age of 50 can receive tax help through in-person and online programs.

Many of the programs will provide help through April 15, the deadline for filing your 2023 tax return. The type of services and programs available will vary by region.

The Internal Revenue Service’s (IRS) Volunteer Income Tax Assistance (VITA) and Tax Counseling for the Elderly (TCE) programs offer free basic tax return preparation to qualified individuals.

VITA sites offer free tax help to individuals, including:

• People who genrally make $64,000 or less
• People with disabilities
• Taxpayers who speak limited English
• People 60 years of age or older

The AARP Foundation Tax-Aide Service focuses on providing in-person and online tax help to people over the age of 50 or who have low-to-moderate income. You do not need to be an AARP member to receive assistance.

The AARP Tax-Aide Site Locator can help you find a site where an IRS-certified volunteer can help you prepare and file your taxes.

Tax-Aide also offers free virtual coaching and software for state and federal returns if you prefer to do your own taxes. You must:

• Have an income between $16,000 and $79,000
• Be an active-duty military member making $79,000 or less

In the Chicagoland area, taxpayers can also access the Ladder Up Tax Assistance Program (TAP). The program provides free basic tax return preparation for:

• Families earning up to $64,000 and individuals earning up to $32,000 per year
• Full-year Illinois residents

You can also contact your local library and government offices for information about free tax preparation services in your area.

Free virtual training sessions for Division of Specialized Care for Children participants, their families and anyone interested in learning more about health insurance topics

Is figuring out your health insurance leaving you confused, frustrated or both?

Change your confusion to confidence with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) Health Insurance Education Series.

These free trainings can help you better navigate your health insurance coverage and benefits. Each month, DSCC team members and other presenters will explain a different topic.

Each presentation will be in English. A Spanish interpretation line will be available during each session.

Check out the topics, mark your calendars and register for each session you’re interested in attending.

The session descriptions are in English followed by Spanish:

• Social Security Benefits, March 12 at 6 p.m.
  • This training will help you understand Social Security benefits. Presenters from the Social Security Administration will share information about Supplemental Security Income and Social Security Disability Insurance. You will learn who can get benefits and how to apply for benefits. It will also cover what the Social Security program benefits are and how to keep your benefits.
  • See the Social Security flyer for more details.
  • Register on Zoom for Social Security Benefits

• Medicaid Denials, April 9 at 6 p.m.
  • This training will help you understand Medicaid denials. It will review the common reasons that Medicaid denies services, such as equipment. The presentation will also share tips on how to avoid denials and what to do if Medicaid denies your services. This training will be for those with regular Medicaid and those enrolled in a managed care plan (MCO).
  • See the Medicaid Denials flyer for more details.
  • Register on Zoom for Medicaid Denials

• Transitioning Health Insurance Benefits to Adulthood, May 14 at 6 p.m.
  • This training will help you understand how to transition health insurance benefits to adulthood. It will go over different insurance types, including Medicaid, Medicare and private insurance. This presentation will help you know what to start thinking about for health insurance benefits as you or your child nears adulthood.
  • See the Transitioning Health Insurance Benefits to Adulthood flyer for more details.
  • Register on Zoom for Transitioning Health Insurance Benefits to Adulthood

• Beneficios de Seguro Social, 12 de marzo a las 6 p.m.
  • Esta capacitación lo ayudará a entender los beneficios del Seguro Social. Los presentadores de la Administración del Seguro Social compartirán información sobre el Seguro de Ingreso Suplementario y el Seguro de Incapacidad del Seguro Social. Aprenderá quién puede obtener beneficios y cómo solicitarlos. También cubrirá cuáles son los beneficios del programa de Seguro Social y cómo conservar sus beneficios.
  • Consulte el folleto de Beneficios de Seguro Social para obtener más detalles.
  • Enlace para registrarse
    
• Negaciones de Medicaid, 9 de abril a las 6 p.m.
  • Esta capacitación lo ayudará a comprender las negaciones de Medicaid. Revisará las razones comunes por las que Medicaid niega servicios, como equipos. La presentación también compartirá consejos sobre cómo evitar negaciones y qué hacer si Medicaid niega sus servicios. Esta capacitación será para quienes tienen Medicaid regular y quienes están inscritos en un plan de atención administrada (MCO).
  • Consulte el folleto de Negaciones de Medicaid para obtener más detalles.
  • Enlace para registrarse
    
• Transición de los beneficios del seguro médico a la edad adulta, 14 de mayo a las 6 p.m.
  • Esta capacitación lo ayudará a comprender cómo hacer la transición de los beneficios del seguro médico a la edad adulta. Tratará diferentes tipos de seguros, incluidos Medicaid, Medicare y seguros privados. Esta presentación le ayudará a saber en qué empezar a pensar en cuanto a los beneficios del seguro médico a medida que usted o su hijo se acercan a la edad adulta.
  • Consulte el folleto de Transición de los beneficios del seguro médico a la edad adulta para obtener más detalles.
  • Enlace para registrarse

You can also download a flyer with all the Health Insurance Education Series topics and registration links. (The flyer is also available in Spanish.)

The webinars are open to DSCC participants, their family members and anyone interested in these topics.

This is the second year for the DSCC Health Insurance Education Series. It began in response to DSCC families’ questions and suggestions from our Family Advisory Council.

Details about each series session are also posted on our Events page.

The 2024 Health Insurance Education Series is free for all attendees.

If you miss a session, you can access the recordings and related materials on our Family Education Webinars page.

If you have questions about these webinars before or after a session, email dscc@uic.edu or call (800) 322-3722.

We look forward to seeing you online!

This free training program prepares graduate students, self-advocates and family members to be leaders in improving health services for people with disabilities.

Family members, self-advocates and graduate students can apply for a free training program to build your skills and improve the quality of life for people with disabilities.

The University of Illinois Chicago’s (UIC) Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND) training program is now accepting applications for the 2024-25 school year.

This yearlong interdisciplinary program will provide participants a deep dive into areas that include:

• Cultural competence
• Emerging issues
• Family-centered care
• Leadership
• Advocacy
• Serving children with autism and other disabilities and their families
• Services and systems change

IL LEND is housed in the Department of Disability and Human Development at UIC. It is part of LEND’s nationwide network providing interdisciplinary training to improve the health and well-being of individuals with disabilities. LEND focuses on providing individuals with the skills necessary to create positive change on all levels, from the individual to systems.

The IL LEND fellowship program brings together trainees from diverse backgrounds. Trainees will participate in classroom learning and a wide variety of hands-on experiences.

Training will focus on serving individuals with disabilities and their families through coordinated, culturally competent and family-centered care and gaining a deeper understanding of public health services and policy systems change.

Training will include:

• An individually tailored mentorship
• Weekly didactic (classroom) sessions
• Research or leadership projects
• Community outreach
• Policy and advocacy training
• Clinical training with a focus on Autism

There is no cost to participate in the fellowship program. Eligible trainees can receive a stipend.

This program is open to graduate students, adults with developmental disabilities, parents and/or siblings of individuals with developmental disabilities, and individuals from diverse backgrounds.

IL LEND trainees from the Chicago metropolitan area meet in person at UIC for their LEND training. Trainees can also join remotely through training sites at the University of Illinois at Urbana-Champaign (UIUC) and Southern Illinois University Carbondale (SIU).

The program gives priority to the following applicants:

• Family members
• Self-advocates
• Graduate students in the represented disciplines, which include nursing, social work, developmental pediatrics, disability studies, and public health.

See the IL LEND graduate program brochure for more details and a complete list of study areas.

Download the IL LEND Fellowship Program application flyer to review or share.

Read more about applying on the IL LEND website. You can also click on the links below to download the:

• Self-advocate application
• Family member application
• Graduate student application

The deadline to apply is March 25.

If you have questions about the fellowship program, contact Kruti Acharya at acharyak@uic.edu or (312) 413-1495.

To learn more about IL LEND, visit www.illinoislend.org.

The B.E.S.T. study looks at how care coordination services that include mental health support can help teens with intellectual and developmental disabilities.

The teenage years can be a challenging time for all teens, including teens with intellectual and developmental disabilities (IDD).

Is your teen or young adult feeling sad, stressed or overwhelmed?

Consider joining the B.E.S.T. study. B.E.S.T. stands for Behavioral Health Stratified Treatment (B.E.S.T.) to Optimize Transition to Adulthood for Youth with IDD. 

The B.E.S.T. study wants to know if care coordination services combined with mental health programming can help teens with IDD live happier and healthier lives. 

All Division of Specialized Care for Children (DSCC) participants receive care coordination services. B.E.S.T. study participants receive access to additional behavioral and mental health resources and support.

DSCC participant Lily Kohtz, 19, (pictured on the left in the above photo) says her mental health has improved since taking part in the B.E.S.T. study.

Lily has spina bifida, uses a wheelchair and has difficulty with anxiety and depression due to her disabilities.

“I think a lot of people don’t connect anxiety or depression to having a disability,” she said. “The B.E.S.T. study has helped me talk about these things. We all have bad days, but depression is worse. Understanding how disability and mental health are tied together and having strategies to use to help me cope has really helped me.”

Lily says she’s enjoyed the online group sessions, where she now meets monthly with four other teens and a group leader. All meetings are confidential. 

“We go over coping strategies such as controlling your thoughts and getting rid of the negative. I frequently use the skills we’ve learned and feel like my mental health has improved,” she said. 

Lily’s mom, JoAnn Watkins (pictured on the right in the above photo), agrees that the study has benefitted Lily in many ways.   

“I’ve seen a positive difference in Lily since she started with the B.E.S.T study. She’s using the skills she’s learned, and you can really see the improvement in her attitude and overall mental health.”

The study began recruiting participants in late 2022. More than 250 DSCC participant families have enrolled in the study so far. 

Eligible DSCC participants must be enrolled in DSCC’s Core Program or Connect Care Program. (Please note that DSCC teens enrolled in the Home Care Program are not eligible to participate.)

The B.E.S.T. study is a free and voluntary project. Teens can join the study if:

• They currently have a DSCC Care Coordinator and are enrolled in DSCC’s Core or Connect Care programs.
• They are between 13 and 20 years old.
• They have an intellectual or developmental disability.
• They can comprehend at a fourth-grade or similar level.
• They can read and speak English.
• They have a computer, tablet or smartphone they can use to access the internet.
• They have permission from their parent, caregiver or guardian (if they are under 18).

The B.E.S.T. study team developed the project with input from a group of B.E.S.T. Study Scholars. These scholars are teenagers with IDD who tested and reviewed all of the B.E.S.T. study materials.

Teens who join the study are put into one of two groups:

• Group A receives care coordination services as usual from their DSCC Care Coordinator.
• Group B receives care coordination services and mental health support from the B.E.S.T. team. This support is based on each teen’s needs and can include:
  
  • Mental health education
  • Online group sessions
  • Caregiver education and support

The study is a virtual program that will continue recruiting through December 2025.

The B.E.S.T. study is a partnership between DSCC and the University of Illinois Hospital and Health Sciences System (UI Health), the University of Illinois Chicago’s (UIC) Department of Disability and Human Development and the UIC Department of Pediatrics.

The principal investigators are Dr. Benjamin Van Voorhees and Dr. Kristin Berg.

The B.E.S.T. study team includes mental health professionals from Illinois, California and Massachusetts. They are all working together to find a way to promote the health and well-being of teens with IDD.

You can learn more information for both teens and parents/caregivers on the B.E.S.T. study website.

If you would like to join the study or have questions, please email the B.E.S.T. study team at beststudy@uic.edu or call (833) 732-5778.

If you choose to join, you and your family can support research that helps other teens and families.

Both parents/caregivers and teens must agree to be in the study. (Note that if a teen is their own legal guardian, they can participate alone or with a parent/caregiver if they choose.)

Those who join will be compensated for their time.

We’re excited to continue our partnership on this important research project!

Fun, inclusive events the whole family can enjoy throughout Illinois!

How will you make memories this holiday season?

There are light displays, sensitive Santa opportunities, parades and more going on throughout Illinois.

Our Special Events page includes a roundup of opportunities designed specifically for youth with disabilities and special healthcare needs.

You can also browse this collection of special programs and event guides for opportunities to create some holiday magic and plenty of smiles:

• Autism Speaks and Cherry Hill Programs will provide sensory-friendly Santa experiences in Illinois and the St. Louis area on Dec. 3. These visits are free. Keepsake photo packages will be available for purchase. You must sign up to attend. Visit the Santa Cares website for a complete list of Santa’s stops. Be sure to select “Santa Cares”, “Caring Santa” or “Sensitive Santa” when checking your location. (Note some event dates and times may vary. Please check your location to confirm your date and time.)
• The National Federation of the Blind is offering letters from Santa and winter celebration letters in Braille to children who are blind or have low vision. The program is for children ages 10 and younger. Please complete the letter request form before Dec. 15. If you have any questions, call (410) 659-9314, ext. 2236, or email education@nfb.org.
• The Secret Sleigh Project is coordinating volunteers to provide in-home Santa visits to children who are medically fragile. Use the “Request a Santa Visit” form on the project’s website to request a visit.
• For families in the southern Illinois area, SI Families’ event calendar provides a great list of fun, seasonal activities. Other events in the area include Sensitive Santa at Heartland Regional Medical Center in Marion, the Carbondale Lights Fantastic Parade, and the DuQuoin Holiday Lights Fair.
• For options in central Illinois, check out these lists from ChambanaMoms.com and Springfieldmoms.org. Great places to see lights include Chatham Lights up the Park, Festival of Lights in East Peoria, and Mattoon Lightworks.
• For Chicagoland residents, WTTW Public Television, Chicago Parent Magazine and Kidlist have some great suggestions for things to do and see. Want to catch a show? Chicago Children’s Theatre features accessible weekends for children and their families.
• Don’t forget to check with your local zoos! The St. Louis Zoo and Lincoln Park Zoo will offer a sensory-friendly viewing option. Contact your local zoo to see what’s happening and when.

We will continue to add holiday events and activities, so please check our Special Events page often throughout the season.

If you know of a good sensory-friendly event to share, please email us at dscc@uic.edu.

Please note, the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is not involved in organizing or scheduling these holiday events. If you have questions about a specific event, please contact the event sponsor or organizer.

Pastor Tim Reynolds organizes the annual Special Needs Superheroes event to take place in Mount Vernon on Oct. 28

In Mount Vernon, superheroes of all kinds unite each year to bring joy to children and adults with disabilities.

Mount Vernon Baptist Temple’s annual Special Needs Superheroes event encourages individuals of all ages and abilities to dress as their favorite superhero and enjoy fall activities together. This popular free celebration returns for its fifth year on Oct. 28.

Pastor Tim Reynolds helped create the event and credits his wife, Melissa, and a dedicated group of volunteers with keeping it running. Reynolds’ daughter Isabella has complex medical needs and is a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

Reynolds said the idea for the event came from a desire to serve his small community in southern Illinois.

“It can be hard for families and individuals with disabilities to go to a theme park. We have a church with a good layout, nice grounds, and a gymnasium,” Reynolds said. “I pastor two churches, and we decided to work together to create a special day for young and old alike that was as close to a carnival atmosphere as possible.”

Choosing a superheroes theme, the first event kicked off in 2018.

“I’m not sure why we chose the superheroes theme, but it fit, and it’s lots of fun. The first year we had about 400 attendees,” Reynolds said.

The event continued to grow each year except for a one-year gap in 2020 due to the COVID-19 pandemic.

“This year we’re planning for more than 800 guests. We have a bunch of folks who love Comic-Con. They have amazing costumes and travel from Missouri, Kentucky, Indiana and other places to help us year after year,” Reynolds said.

Volunteers from churches, 4-H clubs, government, and more serve as “buddies.” They help participants of all ages and abilities experience activities that include:

• A petting zoo and horseback rides
• Face painting and games
• Balloon tying with Rainbow the Clown
• Superhero photos
• Haircuts
• Brats, hamburgers, snow cones and popcorn

“It’s just a big kick. Some people like dressing up, others just like taking it all in,” Reynolds said. “I really love the horseback riding and seeing them with the animals. For some, it’s the first time they’ve ever ridden a horse or been able to touch and be up close to these animals. They’re so uninhibited in expressing their excitement and joy. You can’t help smiling all over.”

The guest list also includes community members and residents from area Community Integrated Living Arrangement (CILA) Homes.

The whole Reynolds family, including Isabella and her three older siblings, also take part in the fun.

Reynolds said his wife, Melissa, organizes all the details for the superheroes event. She prefers to remain in the background while he is “just the promoter and front man.”

“She is the rock of our family and works tirelessly caring for Isabella,” Reynolds said.

Isabella has Moebius syndrome, a rare neurological disorder that can cause paralysis, an inability to smile and other disabilities.

“We adopted her as a baby and the doctor said she wouldn’t live past a year old,” Reynolds said. “She’s a happy girl and recently turned 12.”

Isabella enrolled with DSCC shortly after birth and receives services through the Home Care Program. The Home Care Program helps children and young adults who need in-home nursing to safely live at home.

“We connected with DSCC at the hospital and really appreciate all that they do,” Reynolds said. “DSCC has helped us track down nursing services and medical equipment. They’re always there to help and are another go-to when you need help filling in the gaps.”

Members of our DSCC team from the St. Clair Regional Office will be at this year’s Special Needs Superheroes event to speak with families about our services.

The event takes place from 4 to 6:30 p.m. on Oct. 28 at Mount Vernon Baptist Temple, 817 Woodland Drive, in Mount Vernon. There is no charge to attend.

“Everything is completely free,” Reynolds emphasized. “There’s nothing better than the smiles and hugs you get from kids with sno-cone-covered faces. We started all of this to be a blessing to someone, but I think we, the volunteers, are truly the ones who go away blessed.”

See the Special Needs Superheroes flyer for more details or visit the Events section of our website.

If you’d like to attend, please call or text (618) 315-1111 to register. The deadline to sign up is Oct. 23.

Lily Brown and her entire family saw Taylor Swift perform at Chicago’s Soldier Field

Lily Brown and her family experienced a whirlwind week earlier this month that they won’t soon forget.

The 14-year-old Oak Forest girl graduated from eighth grade. She then played in an adaptive Little League Challenger baseball game.

But the week’s biggest highlight was seeing Lily’s favorite artist Taylor Swift in concert at Soldier Field in Chicago on June 2.

“It was a very special week for all of us,” Lily’s mom, Jennifer Brown, said.

A nonprofit group of Chicago-area firefighters called Project Fire Buddies made the unforgettable concert experience possible.

Lily has Rett syndrome, a rare genetic neurological disorder. The condition can severely affect abilities such as speaking, walking, eating and even breathing.

Lily has seizures and uses a wheelchair. Even though she doesn’t speak, she says a lot through her expressive eyes and huge smile.

She is also a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). DSCC partners with families to help them find the right services and resources for their child’s special healthcare needs.

In January, Lily turned 14. For her birthday present, Jennifer wanted to take her to see Taylor Swift, who announced her concert tour would include Chicago.

“I took her older sister, Grace, when she was about 9 years old to see Taylor Swift. It was a really special mother and daughter experience,” Jennifer explained. “I wanted Lily and I to have that same experience. Due to the pandemic, Taylor Swift hasn’t toured for a while.”

From the day the tour was announced, they searched for two accessible tickets nearly every day. But their search came up empty. Then, the Oak Forest Project Fire Buddies heard about Lily’s wish to see Taylor Swift.

The Oak Forest Fire Department created Project Fire Buddies in 2016. Its mission is to bring joy to kids struggling with serious illnesses and their families. Volunteers visit the kids throughout the year to deliver gifts for special occasions, play games, read books or just to say “hi” and spend time together.

“We love the fire buddies!” Jennifer said. “We’re so grateful for all that they do. They gave Lily a bike made specifically for her needs so that she can enjoy riding. This year, she’s also playing with the Challenger’s baseball team and enjoyed playing against the Project Fire Buddies team.”

Now, Project Fire Buddies has made Lily’s ultimate birthday wish come true and more.

“Our family usually has to use the divide and conquer approach. We don’t get to attend events together very often,” Jennifer said. “It was an incredible surprise to learn that our Oak Forest Fire Buddies chapter found tickets for our entire family and worked with Soldier Field to have the area accessible for Lily’s wheelchair. We were just blown away.”

Since no “Swifty” can go to a concert without bling, everyone made sure Lily had just what she needed for the big night.

“We made a cute ‘Shake it Off’ shirt with all the sparkle and bling any Swifty would be proud of,” Jennifer said. “We also made a sign, and friends also got her some flashy, light-up flare.”

The Brown’s had an amazing time – together – at the Taylor Swift concert.

“The show was incredible, and Lily loved it,” Jennifer said. “She did have a couple of seizures during the show but bounced back in time to catch her favorite song, ‘Shake it Off.’”

“Project Fire Buddies is hoping to expand to help more kids who are medically challenged or have life-threatening conditions,” Jennifer added. “The Oak Forest chapter is amazing and incredibly generous. They are an important part of Lily’s life, and we are so thankful.”

Visit our Resource Directory to learn more about Project Fire Buddies.

You can also read about the news coverage of Lily’s special concert experience:

• CBS Chicago news story
• Oak Forest Patch news story

Thank you to Project Fire Buddies for making Lily’s wish come true!