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.

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.

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.”

Elijah’s Baby Bucket List is a social media movement raising awareness about lissencephaly while helping 4-year-old Elijah live life to the fullest

Elijah is quite the celebrity and not just among his nine older siblings.

The 4-year-old was born with a rare, terminal genetic condition called lissencephaly.

The devastating diagnosis led his family to create a bucket list to fill Elijah’s lifetime with as much happiness and adventure as possible.

“Elijah’s Baby Bucket List” is now a popular social media movement dedicated to raising awareness about lissencephaly. It also provides opportunities for Elijah to live life to the fullest while spreading joy and making new friends and memories.  

Elijah’s story has appeared on TV, in print and online. He also has thousands of followers from around the globe on platforms including Facebook, Instagram, YouTube and TikTok. His followers read about his latest experiences and enjoy videos of his infectious laughter and smile.

“He’s always happy, always laughing. It’s hard to stay sad when he’s around,” said his mother, Amy Tarpein. “He is unconditional love and the embodiment of pure joy.”

“Choose joy”

Elijah, a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC), was born deaf. Approximately two months later, he was diagnosed with lissencephaly.

Lissencephaly occurs when the folds and grooves of the brain do not develop correctly. 

“It was devastating. The doctors said he wouldn’t live beyond the age of 2,” Amy recalled. “We were packed and ready to spend time at my sister’s. Instead, I loaded up the kids, left the hospital and we drove to Florida to see the ocean.”

During that trip, the idea for Elijah’s Baby Bucket List was born.

 “It can all be really hard, but we decided that we could either sit around and feel sorry about things or choose to give Elijah the best, God-filled life possible while he’s here. We decided to choose joy, be grateful, encourage others and hope,” Amy said.

Through “Elijah’s Baby Bucket List”, the family shares inspirational messages, videos and updates as they work through experiences on Elijah’s bucket list.

“We’ve shared about the first time he heard his sister sing, visits to the hospital and doctors, and our adventures to the Morton Arboretum, Beyond Van Gogh Exhibit, St. Louis Aquarium, hiking in the mountains, observing stars with a NASA scientist, picking pumpkins, playing in the leaves and a private screening of ‘Clifford the Big Red Dog,’” Amy said.

 “The focus is on Elijah doing or watching the things on the list and making as many memories and friends as possible!”

Other recent highlights include the city of Quincy declaring Sept. 8 as Lissencephaly Awareness Day and lighting the Bayview Bridge purple in his honor.  The Quincy Herald-Whig newspaper covered the special honor and Elijah’s story last fall.

“Our town came together to spread awareness and advocate for kids who are differently-abled. They lit up the bridge purple for Elijah, ” Amy said.  “I can’t express the emotion that overwhelmed me when we were also given a beautiful photo of the purple bridge taken by a local artist. The community support for my family has been amazing.”

“Be a light”

Amy says her family loves Elijah fiercely. He has five grown siblings and four at home — Avayha, Isaiah, Kaylynn and Mackenzie – who dote on him.

They enjoy spending time together reading, studying, looking at and doing art, listening to music and cuddling.

“Avayha practices violin with him. She tells him the strings and what she’s playing. He loves music,” said Amy. “When we go to museums, she will read all of the descriptions and tell him about the exhibits and artwork.”

Elijah’s lessons include learning sign language and using his computer with an eye gaze device.

“He’s doing stuff they said he would never do,” Amy said. “He’s gotten really good at matching his letters, numbers, colors and shapes. He signs mom, dad, call, dog, no and will also sign ‘all done’ when he doesn’t want to get into his AFOs, the orthotics braces, because they are uncomfortable.”

Elijah’s sister Avayha wants to take him to Paris to drink lemonade and see the museums. She set up a lemonade stand to fund the trip, but the COVID-19 pandemic soon followed.

“Avayha asked if she could learn web design, so she could build up her own site,” Amy said proudly. “At 9-years-old, she studied and set everything up on her own. She’s determined to take him.”

Avayha’s website is Lemonade in Paris.

Amy calls caring for Elijah life-changing in the best possible ways.

“If someone had told me that five years ago, I would not have believed it. This was not the plan, but I love my life,” she said.

More to Explore

DSCC has worked with Elijah’s family since 2019. As Elijah continues to check off items from his baby bucket list, DSCC continues to help support his family’s journey.  

“DSCC collaborates with a wide range of agencies,” said Elijah’s Care Coordinator Kathy Thomas. “We’re here to listen and help families with children with complex health needs navigate insurance, health care and other resources.”  

DSCC’s Care Coordinators work countless hours helping families set and achieve their child’s goals based on their family’s unique needs.

Amy continues to plan new adventures for Elijah, stay positive and share the positivity with others.

“Elijah continues to defy the odds,” she said.

“Some things can’t be fixed, only carried! Life is full of things you can’t fix, no matter how well-intentioned you are. God, your higher power or whatever you believe in, always sends someone. I can’t explain half the stuff that happens in our lives, but we are braver together. This was not my plan, but I am truly blessed to be his momma.”

To learn more about Elijah and lissencephaly, follow Elijah’s Baby Bucket List on Facebook or visit elijahsbabybucketlist.com.

The program provides a nurturing, empowering experience for girls and women with disabilities

Illinois Miss Amazing is accepting applications for its 2022 program.

Miss Amazing is a national nonprofit program for girls and women with disabilities. The program aims to build self-confidence and vital self-advocacy skills for participants as well as nurture a sisterhood of girls and women from different walks of life.

According to the Miss Amazing website, girls and women with disabilities face a unique set of economic, social and political challenges. The Miss Amazing program seeks to encourage future leaders and break down stereotypes by empowering girls with disabilities from a young age to take pride in who they are, to set ambitious goals and to fight for the respect that they deserve.

Miss Amazing 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

Illinois Miss Amazing is accepting applications for participants and volunteers for its annual Amplify event on April 9 at the Yellow Box in Naperville. The application deadline is March 1.

The Illinois Miss Amazing experience includes:

• Show rehearsal
• Interviewing
• A fun evening wear presentation
• Sharing your passion and creativity on-stage
• Building friendships

This year’s event is in-person and will feature two shows and one big celebration.

Learn more about the Illinois Miss Amazing program and how it helped one of our participants spread her wings on stage and off at https://dscc.uic.edu/dscc-participant-promotes-illinois-miss-amazing/.

Inspire someone you know to participate in Illinois Miss Amazing.

Applications will be accepted until March 1 or as soon as all spots are filled.  

The Supported Decision-Making Act takes effect Feb. 27 and allows individuals with disabilities to make decisions with help from trusted supporters

When making decisions, we all rely on help and advice to choose what’s right for us.

A new Illinois law ensures people with disabilities can get the help they need to make decisions for their own lives.

The Supported Decision-Making Act empowers individuals with disabilities to make their own choices with the right support. It takes effect on Feb. 27.

Research shows that when persons with disabilities have more control over their lives, they experience better health and wellbeing. However, many persons with disabilities have faced unnecessary and restrictive guardianships once they turn 18 simply because of their disability.

Supported decision-making is an alternative to guardianship. It allows individuals with disabilities to identify a supporter. This supporter can help interpret information, weigh options and help communicate the person’s decisions in certain areas as needed.

These areas can include:

• Where to live
• Medical care or counseling
• Money
• Work
• School
• Public benefits and more

An identified supporter is someone the person with disabilities knows and trusts. It can be:

• A friend
• A family member
• A co-worker or colleague
• A person with professional skills

Under the act, the person with disabilities fills out a Supported Decision-Making Agreement. The agreement identifies the supporter and what areas the person with disabilities needs support with.

This agreement ensures that the person with disabilities makes decisions and not the identified supporter.

This process promotes self-sufficiency and control for individuals with disabilities.

Illinois is among several states that have supported decision-making laws in place.

The Illinois Guardianship and Advocacy Commission has many resources to explain the new Supported Decision-Making Act. These include:

• Supported Decision-Making Fact Sheet
• Supported Decision-Making Frequently Asked Questions
• Supported Decision-Making Training for Persons With Disabilities 

Family Matters Parent Training & Information Center is also hosting an upcoming webinar on the Supported Decision-Making Act.

The presentation will provide an overview of the law. It will also review the contents of a Supported Decision-Making Agreement and share examples of how supported decision-making works.

The “Supported Decision-Making in Illinois: What Is It and How Does It Work?” webinar will take place at 11 a.m. Feb. 22.

Additional resources on supported-decision making are available in the Guardianship and Alternatives section of our Transition Tools.

Free Santa visits for children with autism and other special needs

Are you ready for some Santa magic?

Autism Speaks has partnered with Cherry Hill Programs to provide sensory-friendly Santa experiences nationwide.

In Illinois, Santa will be spreading joy and holiday cheer on Dec. 5 and 12.

Join Santa in a calmer, more subdued environment. He is planning stops in communities that include:

• Aurora
• Champaign
• Chicago
• Gurnee
• Moline
• Northbrook
• Orland Park
• Peoria
• Rockford
• Rosemont
• Schaumburg
• Springfield
• Vernon Hills

These sensory-friendly Santa experiences are free. Keepsake photo packages are available to buy.

You can reserve your spot for the Santa experience online. (The organizers strongly encourage reservations.)

For more upcoming holiday events for children with special healthcare needs in Illinois, be sure to check our Special Events page often.

A DSCC mom and her friend started the Facebook group to connect with other parents of children with special needs

Thanks to an outing at a coffee shop, hearing aids and an impromptu conversation, two moms with children of similar ages and needs connected.

“I saw her daughter’s hearing aids. My son has them, too, so I just started talking to her,” Lace Mandrell said of her first meeting with Bailey McBurney Imig.

In no time Lace and Bailey were texting, talking and sharing tips, concerns and road trips to specialists.

Their immediate connection led to a new Facebook group called “Monthly Mama Therapy.”

Monthly Mama Therapy aims to help central Illinois caregivers of children with special needs connect with and support one another.

“If you’re trying to understand a diagnosis or therapy, running from appointment to appointment or saving for the next piece of equipment, things can be challenging,” said Lace “We just thought that having a network of moms with a wide range of experiences, ready to back you up on the good days and the bad days, would be amazing.”

Lace is the mother of two sons, Ollie and Auggie. Auggie, 3, is bilaterally deaf and has had cochlear implant surgery. He also has Chiari Malformation and was diagnosed with Waardenburg Syndrome.

“He’s a wild child who rarely stops moving,” Lace said. “He’s sweet, inquisitive and a little sponge excited about learning and soaking up everything around him.”

Auggie is a participant in the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). He has been enrolled with DSCC since 2019.

Bailey McBurney Imig is also the mother of two: Paxton, 3, and Parker, 2 1/2. Parker is deaf and has undergone multiple screenings and tests. There is still no diagnosis for her other conditions.

“With all of the testing and so few answers, I feel like she’s probably that one in a million child who will have a diagnosis named after her,” Bailey said. “But, despite all her complications, Parker is a tiny, little bundle of joy who loves attention. She’s an easy-going cuddler who is almost always happy and smiling.”

During their first meeting, Lace and Bailey related to each other right away.

“We just hit it off and I’m so glad. With HIPAA (the Health Insurance Portability and Accountability Act) and concerns for privacy, it can make it hard to connect. Then COVID-19, online therapies and everything else got thrown in,” said Lace. “It’s hard to do this stuff alone. It can get really complicated and overwhelming.”

The more Bailey and Lace talked, the more they wanted other moms in the “same or similar boat” to have a safe space where their kids could connect and they could relax, share and recharge. The seed for Monthly Mama Therapy was planted.

Monthly Mama Therapy has a private Facebook page and hosts meet-ups at local parks, coffee shops and other venues in the Champaign and Bloomington areas. Conversations online and in-person may range from accessible parks and walking trails to experiences with therapies or the transition to school.

The group promotes “therapy” and the importance of caregivers taking care of their own needs, too.

“The online community is really growing. When someone asks a question, the support and responses have been great,” said Bailey. “Our ultimate goal is to build an in-person community that’s just as strong.”

Monthly Mama Therapy hopes to continue growing online and meeting in person when the weather turns cool at central Illinois locations where distancing is possible.

“Our wish list includes adding some veteran parents who are willing the help the ‘newbies’ navigate and prepare for the transitions ahead,” said Lace. “We’d also love to add activities like exercise or yoga to do together.”

For more information, visit the Monthly Mama Therapy Facebook page.