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.  

Kimberley Firkins recognized for exemplifying DSCC’s mission to partner, help and connect

Kimberley Firkins is the 2021 recipient of the Award of Merit from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

The award recognizes exceptional employees for outstanding dedication and service to Illinois children with special healthcare needs.

Kimberley, also known as “Kim” or “Kimba“ to co-workers, is a Program Coordinator Assistant for Home Care Region 2. She is based in the Lombard Regional Office.

Program Coordinator Assistants work as a team with Care Coordinators to meet our participant families’ needs.

Kimberley is a team player and a constant source of encouragement and support for her participant families and co-workers alike.

Her colleagues say she is friendly, welcoming and gladly offers her creativity, knowledge and skills to assist wherever needed.

She sends her Lombard teammates positive messages and self-care tips weekly to keep everyone motivated and foster a positive work environment. Those messages have helped bridge the “disconnect” of working remotely through the pandemic.

Co-workers say her calm and caring nature puts the families she works with at ease.

“Kimberley’s enthusiasm and passion for serving others are an inspiration to many,” said DSCC Executive Director Thomas Jerkovitz. “The past two years have been challenging. Kimberley’s teamwork spirit highlights that the way we are working may be different, but our dedication to each other and our participant families remains strong.”

Kimberley has worked at DSCC for 16 years in the Core and Home Care programs.

“I would like to say how fortunate I am to work in an organization that makes such a huge impact to so many people and families, especially over the last almost two years,” Kimberley said.

“I hear from families almost every day how important it is for them to hear from their care coordination team not just as their Care Coordinators or the Care Coordinators’ Assistants but as their friends as well, wanting to know how they’re doing, how things are going, and how they’re handling all of the stressors that are happening right now. It just means so much to me to know that our organization has that place in their family.”

Kimberley was an Award of Merit nominee in 2016, 2018, 2019 and 2020. She said she is both honored and surprised to receive the 2021 award.

“I am so very grateful. It means the world to me, but I don’t do what I do without everyone else. We’re all one team. We all won this,” she said.

DSCC staff nominated a total of six of their colleagues for this year’s Award of Merit. As the winner, Firkins receives an Award of Merit memento, a $2,500 award and recognition from the Executive Director.

The other 2021 nominees are:

• Cynthia Booth, Home Care Program Hospital Liaison, Chicago Home Care Regional Office
• Becca Hunt, Care Coordinator, Marion Regional Office
• Danielle Osburn, Claims Unit Assistant Supervisor, Central Administrative Office
• Tess Rhodes, Quality Improvement Specialist with Core Quality Improvement, Central Administrative Office
• Marian Walles, Care Coordinator, Mokena Regional Office
  

Congratulations, Kimberley! And a big thank you to all the nominees for their excellence on behalf of our children and families!

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.

Families and professionals came together in person and virtually at the annual Stepping Stones of Transition Conference in East Peoria to improve outcomes for transition-age youth with special needs

As a single parent raising a child with complex medical needs, Kristen Fisher says it’s easy to feel isolated.

The feeling subsided as she walked through the East Peoria Riverfront Conference Center and saw dozens of other parents and youth with similar needs.

“Seeing everyone at the conference and meeting other parents, it helps confirm that I’m not alone,” Kristen said.

The Illinois Statewide Transition Conference, titled “Stepping Stones of Transition,” returned for its 16^th year on Nov. 4-5 in East Peoria after a one-year absence due to the COVID-19 pandemic.

More than 660 families and professionals gathered in-person and virtually to gain skills, resources and information to help youth with disabilities prepare for adulthood.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is a conference sponsor and served on its steering committee.

DSCC covered the conference-related expenses for 33 of our participant family members across the state.

A “Phenomenal” Experience

Kristen is the mother of DSCC participant Connor Fisher, who will soon turn 15 years old. He was born prematurely with profound delays and a “smile that will melt your heart,” she said.

This year’s conference was Kristen’s first and she called the experience “phenomenal.”

“It’s hard to grasp that my baby is not a baby. He’s growing up. It’s a scary transition,” she said.

Kristen particularly enjoyed the breakout session “SSI, SSDI, HFS: Understanding the Alphabet Soup of Government Benefits.” She gained a better understanding of available government benefits and how they change over the lifetime.

DSCC mom Amy also learned helpful information during the breakout session on government benefits. She said financial planning is an important part of preparing for her daughter Jaida’s future. Jaida, 17, has been a DSCC participant since just after birth.

Eighteen-year-old DSCC participant RJ Smith attended the conference with his mom, Karla. It was the first time attending for both.

RJ is a senior in high school who plays the baritone in his high school band. He wants to go to culinary school after graduation to become a baker.

He picked all the conference breakout sessions that he and Karla attended.

One of their favorites was about the Fast Track Transition Program through the Illinois Department of Human Services’ Division of Rehabilitation Services. The program provides pre-employment transition services to students with disabilities.

RJ said he is ready for more independence, and Karla said the session helped open her eyes to more options to help achieve that.

“I want to help him become more independent and push him toward that but not just leave him sitting the middle of the road, stranded,” Karla said.  “(The conference) overall has been helpful.”

Preparing for Life After Graduation

The conference consisted of informative breakout sessions in the areas of:

• Employment
• Education
• Community
• Health Care

DSCC participant Michael Rounds, 15, said he enjoyed the breakout session on the Culture of Coordinated Support Model. This model is where people with disabilities, families, supporters, agencies and service providers work together to develop and implement consistent support plans with unified goals and services provided by the provider best suited to do so.

Michael said the session made him think about getting more involved with his Individualized Education Program (IEP) at school. He also liked learning more about what choices are available to him as he plans for his future.

His mother, Lori, said the conference helped her know where to start in preparing Michael for life after high school graduation.

Rosa Menard, mom to 17-year-old DSCC participant Jacob, said the amount of information to soak up over the two-day conference was almost overwhelming. She took many notes about potential resources and programs to discuss during Jacob’s next IEP meeting.

Jacob is non-verbal and she wants to set him up for success after high school.

Rosa encouraged other families to start the transition planning process as soon as possible.

“Start asking those questions now,” she said.

Improving Outcomes

Nearly 40 DSCC staff members attended the conference in-person or virtually to network, learn from others and strengthen their skillsets and tools to serve our families.

DSCC also sponsored the conference’s health care track for providers who play a role in the transition from the pediatric to adult healthcare system and those who build youth’s capacity and healthcare skills to prepare for adulthood.

DSCC Transition Specialist Darcy Contri said attending providers found helpful tips and information they will apply in their own practices and interactions with youth and families. These changes include:

• Starting the transition planning process sooner with patients and families
• Making sure the youth and their family are included in all decision-making and planning
• Keeping a holistic view of the patient and noting environmental barriers for their family
• Emphasizing self-determination when working with youth and families on transition goals
• Discussion of self-management strategies with youth and families

Darcy has been involved with planning the conference for the last 16 years.

“Every year it has been exciting to see the positive impact the transition conference has on improving outcomes for Illinois transition-age youth and their families,” she said.

Visit our Facebook page to see more photos from this year’s conference.

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.

DSCC aims to help families strengthen their support to promote young people’s health, safety and wellbeing.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) wants to help Illinois families strengthen their support for LGBTQ+ youth with special healthcare needs and disabilities.

June is Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) Pride Month. There are approximately 5 million LGBTQ+ individuals with disabilities in the United States, according to the nonprofit RespectAbility.

Our DSCC team can provide resources to help our participant families, healthcare providers and community partners understand and support LGBTQ+ youth and their needs.

Research shows that family involvement in an LGBTQ+ youth’s life, particularly in the first two years of coming out, improves their overall safety, health and long-term well-being.

Teaching children about self-awareness and self-care at a young age can lead to better health and safety as a teenager. Helping a child establish boundaries is also linked to better teen health and safety.

Former DSCC Quality Specialist Diane Becker has studied research in these areas. Diane is a nationally certified juvenile treatment specialist and a licensed clinical social worker. She has worked with families and professionals in the social work and counseling fields for 30-plus years.

Diane appeared on the “Just Breathe: Parenting Your LGBTQ Teen” podcast last year to talk about mental health, boundaries and self-care for both LGBTQ+ young adults and parents.

She shared the latest research and discussed the importance of connectedness, family and health and safety.

You can listen to Diane’s two-part interview at the links below –

• What Are These Boundaries You Speak Of? An Interview with Diane Becker Part One
• What Are These Boundaries You Speak Of? An Interview with Diane Becker Part Two

We also encourage Illinois families of LGBTQ+ youth with special healthcare needs to contact us with their questions and concerns. You can call us at (800) 322-3722 or email us at dscc@uic.edu to learn more about available resources and support.

You can also visit our online Resource Directory.

Featured resources that can help support LGBTQ+ youth and their family/caregivers include:

National and Statewide Crisis Hotlines

• Find a Helpline
• National Suicide Prevention Lifeline
• National Domestic Violence Hotline
• The Substance Abuse and Mental Health Services Administration’s (SAMHSA) National Helpline
• Illinois Crisis and Referral Entry Services (CARES) Line
• Illinois Warm Line
• National Runaway Safeline

Connections

• The Trevor Project
• Central Illinois LGBTQ+ Organizations
• Chicago and Illinois Mental Health Agencies and Organizations
• Strong Family Alliance
• PFLAG Parent Support and Resources
• “Expressing, Coping, Reframing: Addressing the Mental Health of ‘Quaranteens’ in the Time of COVID-19”
• It Gets Better Project

Find a Healthcare Provider

• University of Illinois Hospital & Clinics’ Inclusive Healthcare and Policies
• Gender Development Program at Ann & Robert H. Lurie Children’s Hospital of Chicago
• GLMA
• OutCare Provider Directory

Education

• Illinois State Board of Education LGBTQ Student and Family Resources
• Advocating for LGBTQ Students With Disabilities
• Know Your Rights: Students and LGBTQ Rights at School

Information

• Sexuality Resources for Individuals With Disabilities
• Mental Health Resources for LGBTQI Individuals
• Coming Out: Information for Parents of LGBTQ Teens
• RespectAbility’s Resources for LGBTQ+ Individuals With Disabilities

In-person and virtual activities to help youth with and without disabilities stay engaged and learning this summer

Summer is quickly approaching. And though the COVID-19 pandemic is not yet over, the ease in safety restrictions means more in-person activities will be available for this year’s break from the school year. 

If you’re looking for a way to help your child stay engaged and learning, we’ve compiled a list of both in-person and virtual summer camp activities and enrichment programs for youth of all ages and abilities.  

Our list of inclusive activities includes daily adventures, arts and crafts, sports camps, college preparation opportunities and condition-specific programs. 

Our events calendar shows the activities listed by date. You can also search for programs in your area by clicking on a regional office near you. 

For more virtual learning and educational resources for youth, visit the Childcare, Learning and Education Tools section of our COVID-19 Resource Directory. 

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. 

Marcus Theatres offers special moving showings catered to individuals with special needs and their families on select dates.

Marcus Theatres’ Reel Movies for Real Needs is a specially designed program to serve families with special needs who seldom attend movies.

It provides a welcoming and comfortable environment with lower sound and lights up so children who need accommodations and their families can share the experience of seeing family-friendly films at a theater.

Upcoming Reel Movies for Real Needs include:

• Jumanji: The Next Level – Dec. 14
• Star Wars: The Rise of Skywalker – Dec. 21
• Spies in Disguise – Dec. 28
• My Spy – Jan. 11
• Dolittle – Jan. 18
• Sonic the Hedgehog – Feb. 15

A select first run movie is featured one Saturday each month at 10:30 a.m. Visit the Reel Movies for Real Needs website for location and ticket information.

Reel Movies for Real Needs is available at the following Illinois theaters:

• Addison Cinema
  1555 West Lake Street
  Addison, IL 60101
• Bloomington Cinema + IMAX
  1111 Wylie Drive
  Bloomington, IL 61705
• Orland Park Cinema
  16350 South LaGrange Road
  Orland Park, IL 60467

For questions, please call (800) 274-0099, ext. 1.

Families and professionals from around Illinois attended the annual Stepping Stones of Transition Conference to improve outcomes for transition-age youth with disabilities.

More than 550 families and professionals gathered at the 15th annual Illinois Statewide Transition Conference to gain skills, resources and information to help youth with disabilities prepare for adulthood.

The conference, titled “Stepping Stones of Transition,” took place Oct. 17-18 in Collinsville.

The event targets adolescents, parents, caretakers, vocational professionals, healthcare professionals, educators and others involved with improving outcomes for transition-age youth with special needs. It highlights the opportunities and resources available for youth as they, their families and support teams plan and prepare for the future.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) served on the steering committee to plan this year’s conference.

DSCC also covered the conference-related expenses for 23 participant families across the state. Part of DSCC’s mission is to connect adolescents with special healthcare needs and their families to resources that prepare them for the transition to adulthood and adult services.

Lily Dining is the mother of 14-year-old Paulina, a participant in DSCC’s program. This year’s conference was their first time attending.

“We have learned so much, to the point where I don’t know what I want to do first. It’s been so informative and we are well taken care of,” Lily said of DSCC paying for their conference fees and hotel stay.

Lily appreciated that DSCC made sure Paulina, who uses a wheelchair, had an accessible hotel room.

“Everything was so smooth and well-organized.,” she said. “I was free to just learn and not have to worry about how I was going to pay for it.”

Nineteen-year-old DSCC participant Joy attended the conference with her aunt Cecilia. They found several breakout sessions helpful as Joy begins to plan to enter the workforce. Cecilia said she’s eager to work with Joy to identify her strengths and pinpoint jobs that would be a good match.

Joy and Cecilia also enjoyed attending a special meet-and-greet for DSCC families and staff who were at this year’s conference.

The conference consisted of informative breakout sessions in the areas of:

• Independent Living
• Education and Training
• Employment
• Community Integration
• Health Care
• Self-Advocacy

DSCC participant Collin Monical, 18, attended the conference with his parents. His father, Greg, said each person in their group had different perspectives about transition and found sessions that addressed each of their interests and concerns.

Greg said most of his selected sessions involved help with government programs.

“I was not only impressed with the educational benefits of governmental programs. The human aspects presented through these talks were most enlightening,” he said.

Greg said he was particularly inspired by keynote speaker LeDerick Horne, who discussed his own experiences growing up with a learning disability. LeDerick is now a disability advocate, motivational speaker and spoken-word poet.

“Hearing these positive stories is just incredible… As parents, we tend to see a lot of the negative about disability. Every once in a while, you have to step back to see how far our children really have come,” Greg said.

“We will dwell on the materials presented from the conference for a long while. I believe that we now know more about what is out there and could perhaps ask more pointed questions in the future. Thank you so very much for the assistance provided to make this into a reality.”

More than 20 DSCC staff members also attended the conference to network, learn from others and strengthen their skillsets and the tools they use to serve our families.

DSCC Family Advisory Council member Joyce Clay, who is a professor of nursing at Richland Community College, presented a breakout session on the “The Joys and Challenges of Medical Transition.” Joyce shared her experiences with her own daughter’s complex medical needs and the strategies she has learned to enhance the transition process as her daughter moved from the pediatric to adult setting.

Additionally, DSCC sponsored the conference’s health care track for providers who play a role in the transition from the pediatric to adult healthcare system and those who build youth’s capacity and healthcare skills to prepare for adulthood.

“This year’s conference was a great success helping improve transition outcomes for youth with disabilities/special healthcare needs,” DSCC Statewide Transition Coordinator Darcy Contri said. “I am so happy to have had the opportunity to be involved for the 15 years that DSCC has helped host this conference. It just keeps getting better each year.”

Visit DSCC’s Facebook page to see photos and more information about this year’s conference