To celebrate Eloise turning 3, her family threw a “groovy” birthday party to provide comfort and treats for patients and their families at OSF Children’s Hospital of Illinois

Birthdays are major milestones in every child’s life. For families of children with rare diseases, they’re especially precious.  

Eloise was diagnosed with alobar holoprosencephaly when her mom, Rachel, was 20 weeks pregnant. This congenital condition causes a developing baby’s brain to not properly separate into the right and left hemispheres (halves).

“There are several types of holoprosencephaly and alobar is the most severe. We had no idea if she would be born alive or how long she would live,” Rachel said. “She spent 20 days in the NICU (neonatal intensive care unit) before going home on hospice just before COVID-19 hit.”

Her first birthday didn’t seem possible, let alone future birthdays. But Eloise defied the odds. The Division of Specialized Care for Children (DSCC) participant moved from hospice to palliative care. Eloise is now a feisty 3-year-old who brings joy to everyone she meets, Rachel said.

To celebrate Eloise turning 3 in November, her family planned a special birthday party to benefit the patients and their families at OSF Children’s Hospital of Illinois. The party, dubbed “Eloise Fest – Let’s Get Groovy,” provided plenty of treats and gifts from local businesses. The celebration also donated new sound machines to create a more calming setting for families.  

“The party was a way to give back and celebrate something we never dreamed possible,” Rachel said.

Eloise has spent time in nearly every pediatric unit of OSF Children’s Hospital. Rachel and her husband, Zach, got the idea for Eloise Fest when they noticed some of the hospital rooms didn’t have sound machines. 

“Eloise’s first and second birthdays we raised money for the Carter Centers for Brain Research in Holoprosencephaly and Related Brain Malformations. This year we wanted to do something more tangible,” Rachel said.

“It may seem like a small thing but hearing the beeps and monitors all the time can be really stressful for families and patients. A sound machine helps provide calm by drowning out the medical stuff. During our stays, we usually set our machine on the ocean setting and it helps provide a sense of calm that’s hard to come by in a hospital. We wanted to help other families have that same sense of calm.”

Rachel and Zach worked with the hospital to find out how many sound machines each department needed. The couple then posted a wish list for their family and friends to buy 92 sound machines and related supplies. They fulfilled the wish list within three days.

“It was so touching to see how many people are impacted by Eloise’s story and are there supporting and loving her,” Rachel said.

Eloise’s “groovy” themed party also included her favorite music playlist and a VW bus photo station that traveled from floor to floor.  Local businesses also donated an array of food and non-food goodies for patients and staff.

“This has been three years we didn’t know that we would get,” Rachel said. “I’m grateful for the team that we have surrounding us that includes doctors who understand and all the support our friends, family and DSCC provides. How else would we have gotten here?”

You can see more photos from Eloise Fest and the list of local business donors on OSF Children’s Hospital’s Facebook page.

Read more about Eloise’s powerful journey on our Family Stories page.

The 2023 Illinois Miss Amazing program is accepting applications through Feb. 15.

Miss Amazing is a national nonprofit program that encourages girls and women with disabilities to consider their goals, challenge themselves and take pride in who they are.

The Illinois Miss Amazing experience brings together a diverse group of participants to build friendships, self-confidence and self-advocacy skills.

Illinois Miss Amazing is now taking applications for its 2023 Amplify event on March 18 in Bolingbrook.

Participation is open to girls and women ages 5 and older who have:

• An Individualized Education Program (IEP) or Individualized Program Plan (IPP)
• A 504 Plan
• Supplemental Security Income (SSI)
• A physician’s records proving disability

The Illinois Miss Amazing Amplify event activities include:

• Show rehearsal
• Interviewing
• Passion presentation
• Hair and makeup

This year’s event also features a new category. Miss Amazing Mentor is for women ages 36 and older. Mentoring can include:

• Helping the younger Miss Amazing age divisions
• Assisting at your job
• Helping at events or with organizations you feel passionate about!

Miss Amazing Mentor participants will take part in the Amplify event interview, passion presentation and personal introduction.

The March 18 Amplify event is at the Bolingbrook Community Center, 201 Canterbury Lane, in Bolingbrook.

Illinois Miss Amazing is accepting applications until Feb. 15 or until all spots are filled.

The program is also accepting applications for volunteers who want to share in the experience. Visit the Miss Amazing website for details about volunteer options.

You can learn more about the Illinois Miss Amazing program and how it helped one of our participants set goals and pursue her dreams at https://dscc.uic.edu/dscc-participant-promotes-illinois-miss-amazing/.

Events feature sensitive Santa, holiday lights, craft activities and more!

Are you looking for sensory-friendly events that the whole family can enjoy this holiday season?

There are a number of sensitive Santa opportunities, festivals and other holiday activities going on across Illinois.

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

Here’s a look at some of the special programs available and other event guides for parts of the state:

• The Secret Sleigh Project coordinates volunteers to provide in-home Santa visits to children who are medically fragile nationwide. See our Secret Sleigh event listing for more details on how to request a visit.
  
• 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 10 years old and younger. Please complete the letter request form by Dec. 17. Letters are available in English or Spanish. If you have any questions, call (410) 659-9314, ext. 2236, or email education@nfb.org.
  
• The Santa Cares program from Autism Speaks and Cherry Hill Programs provides sensory-friendly Santa experiences in Illinois and the St. Louis area on Dec. 4. These visits are free. Keepsake photo packages will be available for purchase. Reservations are required. 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 may vary. Please check your location to confirm your date and time.)

• For families in the Chicagoland area, Chicago Parent magazine provides a list that includes opportunities to visit with Santa and other events tailored to the needs of children with disabilities.

• In central Illinois, check out this list from ChambanaMoms.com for events within driving distance of the Champaign-Urbana area or this list of seasonal light displays and events from the Mahomet Daily.
  
• SpringfieldMoms.org’s seasonal guide provides a roundup of activities happening in the capital city area.

• Southern Illinois residents can find many fun, seasonal activities on SI Families’ event calendar. It’s packed with ideas including a drive-thru Santa event in Marion, the Lights Fantastic Parade in Carbondale and even a “Home Alone” drive-in movie event at Murphysboro High School.
  
• The animals at the Lincoln Park Zoo, St. Louis Zoo, and other zoos throughout Illinois are celebrating the season, too! Contact your local zoo to find out what’s happening and when.

Be sure to check our Special Events page often as we add more holiday activities to the list. If you know of a good sensory-friendly event to share, please email us at dscc@uic.edu.

Happy Holidays!

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

Fowler Bonan Foundation, a southern Illinois nonprofit, worked with DSCC’s Marion Regional Office to provide shoes and clothing for participant Renesmae and her two younger siblings

Renesmae is an outgoing 5-year-old who loves unicorns. She recently started kindergarten with extra sass and confidence thanks to new unicorn outfits and orthotic shoes for the school year.

Renesmae and her two younger siblings received a free back-to-school shopping spree for these much-needed items and more from the Fowler Bonan Foundation.

Renesmae’s care coordination team from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) partnered with the foundation to make the special shopping trip possible,

“There’s a lot going on. With the kids starting school, we just didn’t know what we were going to do,” her mother, Misty, said during the shopping trip.

“Everyone at DSCC is really nice. They help with rides to the doctors and other things, but we never expected this. I can’t believe we’re shopping! It’s just above and beyond.”

A family in need

Renesmae has been a DSCC participant for most of her life.

“She had viral meningitis and severe seizures when she was 2 months old,” Misty said. “She has partial paralysis on her right side, can’t open her right hand on command or raise that arm very high, and limps or drags her foot when she walks. Thankfully, she hasn’t had any seizures in a while.”

Renesmae also has hypertonia, which makes her muscles stiff and difficult to move, and homonymous hemianopsia, a condition that causes her to see only one side of the visual field of each eye.

Misty describes Renesmae as “outgoing and not one bit shy.”

“She’s my absolute handful and, like the country song says, can be ‘t-r-o-u-b-l-e,’” she said. “She’s also a great big sister and is always doing stuff for her little brothers. She’s such a mother hen to Liam and Aries.”

Liam is an infant, and Aries is 3. Aries is now starting Head Start, a program that promotes school readiness.

Renesmae’s DSCC care coordination team includes Care Coordinator Cheryl Golliher and Program Coordinator Assistant Renee Woodson. They partner with Renesmae’s family to find treatment options, transportation to appointments and other services to help Renesmae thrive.

“The family let me know they needed help getting her orthotic shoes,” Cheryl said. “Renesmae wants to be like every other kid. The shoes look like any other pair of shoes but are different sizes and fit her brace. The shoes are an important part of keeping her focused on positive things, not other distractions.”

As Cheryl and Renee looked for options for Renesmae’s footwear, they learned all three siblings needed new clothes and shoes for the school year.

A local nonprofit ready to help

Our DSCC care coordination teams can help our participant families find community funding opportunities and resources to meet these important needs.

Amy Jones, DSCC Regional Manager for our Olney and Marion offices, and her team contacted the Fowler Bonan Foundation to see if they could help Renesmae’s family. The foundation provides clothing and shoes to low-income children through their Clothes for Southern Illinois Kids initiative.

“They agreed to help buy clothes and shoes for all of the children and asked that we join their volunteers to help the family shop,” Amy said. “We contacted the family and worked with the foundation and our team to get everything set.”

Bobbie Fox is a Fowler Bonan board member who began volunteering with the organization nearly two decades ago.

“My family was new to the area, and I worked as a store manager. Back then I did all the shopping for our families on my lunch break,” Bobbie explained. “Now, more people know about us and that we offer help in 17 counties throughout southern Illinois. We work with local organizations, community businesses, teachers and others to fundraise and make sure that every bit goes out locally to reach our families and help kids.”

 Time to shop

Everyone met at Walmart in Anna on July 20 for the shopping trip. The group included Renesmae’s family – her parents, Misty and Jerry, and little brothers, Liam and Aries – and Bobbie from the foundation and her daughter, Saylor.

Cheryl and Renee were unable to attend. Their teammate Jimmy Baldi, a DSCC Program Coordinator Assistant from the Marion office, volunteered to join the group and help shop.

The first stop was the shoe department. Mom and dad located the right sizes, but the kids had a tough time deciding with so many options to choose from. Renesmae selected Minnie Mouse sandals. Aries went with the Batman sneakers.

“We want to be sure that the kids have shoes and other essentials, such as socks and underwear, in addition to everyday clothes,” Bobbie explained. “The foundation typically provides $100 to $150 for each child to cover these needs.”

A team effort and “win-win for all”

Everyone did their part to help Misty and Jerry feel comfortable and find items the kids needed.

The group took turns hunting for unicorns and superheroes (Aries’ favorite), suggesting styles and finding the right sizes.

Everyone’s efforts were worth it. At the checkout, the kids were happy campers and Misty couldn’t believe they each had five new outfits for school along with plenty of underwear and socks.

Jimmy even snuck in some baby time with Liam.

“I’m really amazed and just so thankful to the foundation and everyone,” Misty said. “These will be hidden away until school starts so that they don’t get messed up.”

As the shopping trip ended, Bobbie exchanged high fives with Renesmae and got a big hug from Aries.

“It’s such a joy to be able to do this,” Bobbie said. “The focus on the kids, partnering with other organizations and individuals. It’s a team effort and a win-win for all.”

The Fowler Bonan Foundation also ordered Renesmae’s orthotic shoes.  Jimmy later traveled to the foundation’s headquarters in Harrisburg to pick them up. Cheryl delivered the shoes to the family.

What started as a team effort, ended as a team effort.

“The Foundation is a great resource and so quick to respond to the needs of our families,” said Cheryl. “The shopping trip helped relieve so much stress and worry for the family. It was a great team effort in every sense of the word. I hated to miss the shopping trip, but Jimmy volunteered to go and really loved going.”

We’re thrilled our Marion Regional Office team and the Fowler Bonan Foundation came together to support Renesmae’s family. A big thank you to Fowler Bonan for providing the generous shopping spree!

If you would like to volunteer to help the foundation or know of a family or child in need, please contact them at FowlerBonanFoundation@gmail.com.

You can see more photos from the shopping trip on our Facebook page.

UIUC’s School of Social Work recognized Amy Jones for her dedication and excellent learning experience for interns

Sruthi Thinakkal says her internship with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) shaped her as a social worker and taught her the meaning of true teamwork.

Amy Jones, Regional Manager of DSCC’s Olney and Marion regional offices, was an enthusiastic and motivating mentor throughout Sruthi’s experience.

Amy has now received the Outstanding Master of Social Work (MSW) Field Instructor Award for the summer 2021 semester. The honor is from the University of Illinois Champaign-Urbana’s (UIUC) School of Social Work.

“Receiving this award was such a nice surprise! I’m truly honored but never expected it,” Amy said.

The School of Social Work gives the award during each internship rotation to a field instructor who has provided exceptional teaching/mentoring for their MSW intern.

“Based on Sruthi’s nomination letter, it is apparent that (Amy is) dedicated to providing an excellent learning experience for the students, and the School of Social Work is very appreciative,” MSW Field Director Lindsey Trout said in an email announcing the award.

Sruthi nominated Amy for the award after spending two semesters with DSCC’s Marion and Olney offices in 2021. (You can read more about how Sruthi’s internship provided life-changing experiences and lessons.)

“It had been a little while since I’d submitted the nomination, and I’ve been so busy that I completely forgot,” Sruthi said. “It made me so happy! I could go on and on about how Amy shares information and is always willing to help others. It was such a nice surprise, but I just knew she would win!”

Sruthi now works in Chicago with the Rush Craniofacial Center team. She credits her internship with preparing her for a job she loves.

“I gained so many skills that have directly impacted my career,” Sruthi explained. “DSCC taught me so much about working in tune with families, the grief process, the importance of teamwork and listening, and how a monthly call can make such a difference in helping families feel supported and connected.”

Amy says interns aren’t the only ones who benefit.

“It’s a mix of seasoned and new that brings fresh ideas and different perspectives to the workplace,” Amy said. “It’s exciting to watch their growth and know that they’re building a ‘toolbox’ of skills that will serve them well as they move on in their careers. It’s equally rewarding learning from them along the way.”

The Olney and Marion regional offices have recently welcomed two new interns to their team.

“I’m looking forward to learning as much from them as they will from us,” Amy said. “I enjoy being able to talk about the world of social services and sharing about DSCC but It’s really a team effort. All of us work to partner with our families, to help them know about and connect with the services they need.”

Amy’s award has a place of honor in her office – and in her heart.

“The award isn’t just mine. It’s for all of us.”

Congratulations, Amy, on your well-deserved honor!

The Heumann-Armstrong Award is for students in sixth grade and up, including higher education

Ableism can take many forms. It is discriminating against someone because of their disability. It can also include bullying, isolation or the refusal to give accommodations to a student with a disability.

Like other forms of discrimination, ableism shows up in ways that are both blatant and subtle.

The Heumann-Armstrong Award is for students in sixth grade and up, including higher education, who have experienced and shown a passion for fighting ableism in education.

The American Association for People with Disabilities, The Coelho Center and Equal Opportunities for Students (EOS) sponsor this award program.

The award started in May 2021. It is named for two disability rights champions:

• Judith (Judy) Heumann, a lifelong and internally recognized advocate for the rights of individuals with disabilities
• Elijah Armstrong, who has epilepsy and founded the EOS organization to help tell the stories of marginalized students in education

The award program defines a disability as any physical or mental condition that affects how someone attends classes, participates in extracurricular activities or socializes with classmates.

Students can submit an application in writing or by video. All applicants must be willing to do a video interview upon winning the award.

Six individuals will receive an education award that includes a $1,000 prize and a video interview posted on EOS social media platforms. Six semi-finalists will also receive recognition.

See the 2022-23 Heumann-Armstrong Award application page to apply.

You can also check out the Heumann-Armstrong Award frequently asked questions and the 2022-23 award opening video for more details.

The deadline to submit applications is July 22.

If you have questions, contact equalstudentopportunities@gmail.com.

Helpful tools and resources for individuals of all ages in honor of Mental Health Awareness Month

May is Mental Health Awareness Month.

Society often focuses on physical health rather than mental health, but both are equally important. Mental health plays a big role in our overall well-being.

Although the pandemic’s challenges have led to more conversations about mental health, talking about it can still feel difficult or out of reach.

It’s important to remember that we all face challenges in life that can affect our mental well-being.

Understanding the topic can help us maintain good mental health and be more informed when experiencing a mental health condition or crisis.

Our Division of Specialized Care for Children (DSCC) team has pulled together a few resources to help get started:

• Life can be challenging, but every day shouldn’t feel hard or out of our control. A mental health screening at mhascreening.org can help provide a quick snapshot of our personal mental health. The screening is free and anonymous. The screening results can help start a conversation with your primary care provider.
  
• Our DSCC Transition Tools include a Mental Health Resources tip sheet with a helpful list of crisis hotlines, service locators, videos and more.

• Mental Health America’s (MHA) Back to Basics Toolkit, available in English and Spanish, covers a wide variety of topics and tools including stress management, coping skills, recognizing when help is needed and where to find help and support.
  
• The National Alliance on Mental Illness (NAMI) has resources geared toward kids, teens and young adults. NAMI also provides a coloring and activity book and step-by-step guidance to help parents explore and talk to children about emotional topics or mental health challenges.
  
• The Illinois Department of Public Health (IDPH) has developed a new “Youth, Adolescent and Young Adult Suicide Prevention” webpage. It aims to help family members and others prevent suicide by knowing the facts about suicide, who is at risk, warning signs specific to this age group and protective factors.
  
• The Caregiver Action Network provides a Blueprint for Families of Loved Ones with Mental Health Issues.

Remember the National Suicide Prevention Lifeline at (800) 273-8255 and the Crisis Text Line (text HOME to 741741) are available 24 hours a day, seven days a week.

A new, nationwide three-digit number will also be available this summer for people facing mental health crises. Starting on July 16, anyone in the United States can call 988 and get connected to the National Suicide Prevention Lifeline.

More mental health resources are available in our online Resource Directory. You can also follow our DSCC Facebook page for more reminders and tips throughout the rest of the month.

Knowing the basics about mental health will help us all feel better prepared when needed.  Support is out there, and recovery is possible.

Eligible families can receive discounts on internet service and devices in their homes

Having affordable and reliable internet service at home is more important than ever.

The Affordable Connectivity Program (ACP) is a federal program to help families afford the cost of internet service and devices in their homes.

Households can qualify in a number of ways. Eligibility can be based on income, participation in other assistance programs or if anyone in the household already receives a Lifeline benefit.

Under the ACP program, eligible households may receive:

• Up to $30 per month discount for broadband service
  
• Up to $75 per month discount for households on qualifying tribal lands
  
• A one-time discount of up to $100 for a laptop, desktop computer or tablet purchased through a participating provider. The household must contribute more than $10 but less than $50 toward the purchase price.
  

The ACP is a program of the Federal Communications Commission (FCC).

The program is limited to one monthly service discount and one device discount per household.

To apply, go to ACPBenefit.org. You may submit your application online or print a mail-in application in English or Spanish.

Applicants also must contact their existing or preferred provider to select a plan and have the discount applied to their bill.

For complete details and to access American Sign Language videos about the program, visit www.fcc.gov/acp.

The ACP Support Center is also available to answer your questions daily from 8 a.m. to 8 p.m. at (877) 384-2575 or ACPSupport@usac.org.

For more utility and financial assistance programs, visit our online Resource Directory.

Here’s a list of day, overnight and virtual camps to help you find the right fit for your child

It’s hard to believe another school year will soon come to an end.

The good news is there are a variety of opportunities to help your children stay engaged and continue learning during the summer break.

We’ve compiled a list of virtual, day and overnight camps across Illinois for all ages.

Does your child want to make new friends? Develop new skills? Meet others with their condition or foster their independence?

Our 2022 summer camp list can help you find an opportunity that is the right fit.

Many camps are returning to in-person sessions this summer. Virtual camp opportunities are also available.

All these camps are accessible for a variety of special needs and abilities, including many of our program’s eligible medical conditions.

Our events calendar shows the summer camps listed by date. You may also search for events in your area by clicking on a regional office near you.

Know of an in-person or virtual summer camp opportunity to add to our list?

Send us the details at dscc@uic.edu. We’ll continue to update our list of camps and activities, so please check back often. 

“My time with DSCC has not only shaped me as a social worker but also shaped my idea of the perfect team.”

As part of the University of Illinois Chicago, the Division of Specialized Care for Children (DSCC) offers internships and other valuable educational opportunities to college students. These opportunities help students gain real-world experience and complete their advanced degrees.

They also help develop the next generation of social workers, nurses and health care providers to serve children and families with understanding and compassion. 

To celebrate Social Work Month, we’re sharing how a DSCC internship provided life-changing experiences for one young social worker.

“My time with DSCC has not only shaped me as a social worker but also shaped my idea of the perfect team,” said Sruthi Thinakkal.

Sruthi wrapped up her two-semester internship with our Marion and Olney Regional Offices in December 2021. She recently graduated with her master’s degree in social work through the BHWELL Scholars Program at the University of Illinois at Urbana-Champaign.

Drawn to partner, help and connect

Sruthi said she discovered DSCC through her advisor. When she first began looking for internships, she was struggling to find the right fit.

About a month before she had to make her decision, Sruthi’s advisor mentioned a new internship opportunity with DSCC that recently opened.

Sruthi did her research and liked DSCC’s mission and approach to helping families. She decided to apply.

“The emphasis was on partnering with families and communities to help children and youth with special healthcare needs connect to services and resources,” she said. “Also, that children and youth with special healthcare needs should be at the center of a seamless support system really stuck with me.”

When Marion and Olney Regional Manager Amy Jones reached out to Sruthi, the “deal was sealed.”

“She spoke passionately about providing families support and teaching them the skills needed for success. Her enthusiasm and sincerity were contagious,” Sruthi said.

She felt excited but worried she would miss out on important opportunities because of the pandemic and working remotely.

Sruthi soon learned she was “in a really good place” and that remote work would be smooth and successful.

“A true team approach”

“From the beginning, the Olney and Marion regional offices provided me with information, cheat sheets, everything I needed to get situated. They would reach out in so many ways,” Sruthi said. “We used chat and had weekly meetings to bond and catch up. It was AMAZING, a true team approach.“

Sruthi shadowed DSCC Care Coordinators during their comprehensive assessments and person-centered planning conversations with families. She also helped Care Coordinators with data entry, scheduling and making calls to families.

One of Sruthi’s major accomplishments during her internship was a guardianship project for DSCC families and staff members in southern Illinois.

Sruthi created an extensive, easy-to-click-through tool kit that includes definitions for the various guardianship processes, step-by-step instructions, courthouse contacts, blank copies of needed forms and legal resources. She presented the toolkit to a group of more than 50 DSCC staff members in the southern region of Illinois.

“Sruthi’s project focused on (the question), could families complete this type of process on their own?” Amy said. “She diligently contacted all 32 courthouses in both regions, put together a comprehensive tool kit, then partnered with Care Coordinators to make calls and contact families. Already, one family she helped has successfully completed the process and another continues to work through the process.”

Amy praised Sruthi’s eagerness to learn and ability to soak up information.

Lessons for a lifetime

The end of the internship was bittersweet for both Sruthi and the Marion and Olney office teams.

“It’s hard leaving a fantastic team but the lessons I’ve learned will be with me always,”  Sruthi said.

“One of the biggest takeaways for me is the importance of just being there and listening. Chatting about every aspect of a kiddo, providing space to vent, helping to arrange something for a family that has so much going on every moment and obstacles no one expected, getting to know parents who are so worried about their kiddos that they forget about their own health, and hearing how they feel alone, not lonely,” she continued.

“These conversations with families each month create an everlasting relationship and lessons that I will carry with me for a lifetime.”

Sruthi is now moving to Chicago and launching her career in social work. She’s ready to take what she’s learned at DSCC and put it into action.

“I’m so grateful for my internship at DSCC,” she said.

“I will be working with the Rush Craniofacial Center team and believe that my internship experience at DSCC was key to helping me move into this position. I’m looking forward to building new partnerships, connecting individuals to the programs and tools needed for self-determination, and making sure that each patient knows that they have a team behind them that genuinely cares.”