Financial assistance and resources from DSCC helped Payton’s family pay for modifications to their home and vehicle so he can stay active.

Eight-year-old Payton was born with a gene mutation so rare that it doesn’t have a name. The condition affects the STXBP1 gene and causes seizures, developmental delays, nonverbal communication and abnormal muscle movements.

“There are less than 250 people (with the mutation) that we know of worldwide,” Payton’s mom, Kristy, explained. “It is almost like a spectrum-type diagnosis… Doctors just don’t know much about it.”

What Payton’s family does know is that his symptoms are severe. He cannot walk or sit up and is nonverbal. However, he has no problem letting his happy, easygoing personality shine through. Payton loves his little sister, Hunter, and doing special extracurricular activities, like horseback riding and water therapies.

Kristy says the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) has helped provide the accommodations, equipment and resources needed to help Payton stay active and comfortable as he grows.

Payton became enrolled with DSCC six years ago. His family qualified for financial assistance from DSCC to install a ramp in their home for Payton’s wheelchair.

“He’s getting bigger, and we were starting to have difficulties getting him in and out of our vehicle and his car seat,” Kristy said. “I contacted (our Care Coordinator) Beverly and she told me about the ways DSCC could help.”

DSCC was able to provide some financial assistance to modify the van with a lift, but the remaining price tag was still too expensive for the family to afford. Beverly then used her connections within the community to link Payton’s family with two charitable organizations to pay most of the remaining cost.

“Beverly went above and beyond,” Kristy said. “It’s been awesome. Now I can wheel him in and strap him down, and it’s so much easier without having to get him out of the chair and do multiple transfers.”

The modification helps the family of four’s busy lifestyle, especially now that Payton is in second grade and is increasingly involved in activities outside of the home.

Kristy said DSCC’s assistance and Beverly’s patience and hard work have helped make her family’s lives much easier. She also values Beverly’s knowledge of community resources and services and encourages other families to work with DSCC and ask what may be available to help their family.

“If Beverly wasn’t able to help with something, she can always point me in the right direction of where I could turn,” she said. “You just need to ask the question, and don’t be afraid to ask.”

 

DSCC families in need receive gifts and necessities from our generous community partners.

Partnerships are a crucial part of our mission to help children and youth with special healthcare needs connect to services and resources. For 80 years now, DSCC staff has developed relationships with social service agencies and community organizations across the state to help improve the lives of our children and families. During this holiday season, we are especially grateful for our community partners who’ve stepped up to ensure that some of DSCC’s neediest families have a merry Christmas.

In the Springfield Regional Office, Care Coordinator Robin Mahnken worked together with the Salvation Army in Jacksonville and her dedicated team of colleagues to deliver piles of wrapped presents for a sick 1-year-old in our program and her three siblings. The girl was born with Down Syndrome and a heart impairment that required surgery a few months later. In November, she developed an upper respiratory infection and was hospitalized and placed on a ventilator.

Robin has stayed in close contact with the girl’s mother since her admission to the hospital and learned the family is greatly strained financially. During the first week of December, the mother asked Robin to help find any available Christmas assistance for her children. Though the deadlines for many local charities’ assistance programs had already expired, Robin spoke with a director at the Salvation Army, who made arrangements for Robin to “shop” their facility for items on each of the children’s wish lists while the mother stayed at her daughter’s side in the pediatric intensive care unit.

“I anticipated receiving an article of clothing and one or two toys for each child.  I was overwhelmed by all of the gifts selected.  Volunteers called to me from every direction suggesting this or that for one of the children,” Robin said. “The director kept telling me I hadn’t selected enough.  I left with a carload of toys and clothing.”

With the mother in no position to wrap gifts at the hospital, Robin snapped photos of the items to show the mother and wrapped them herself. Robin saved the little girl’s packages to be wrapped by Springfield RO staff during their holiday party this week. Springfield RO members also donated funds to purchase a Walmart gift card for the family. Robin and her husband, with the family’s permission, delivered four huge bags of wrapped presents and the gift card to the appreciative family on Wednesday night.

At our Lombard Regional Office, staff members have developed a special bond with their building neighbor, Hope Fellowship. This bond was strengthened last year when Pastors Jeff Brewer and Jon Trott helped the office cope with the difficult loss of their assistant regional manager, who passed away unexpectedly in November 2016. The pastors’ support of the Lombard RO has continued ever since and earlier this month, Pastor Jeff asked Program Coordinator Assistant Kim Firkins if any DSCC families in the Lombard office’s coverage area need extra help during this year’s holidays.

Kim worked with the Lombard office’s managers and assistant managers to check with staff for families in need. Staff suggested a total of eight families, and Kim collected information about each family member and provided it to Hope Fellowship. Hope Fellowship’s parishioners purchased gifts for each family member. Their gifts include diapers, wipes, a homemade fleece blanket, pajamas, DVDs, gloves, hats and a generous assortment of gift cards for gas, groceries and various stores and restaurants. Hope Fellowship also provided stockings for each child and parent.

Kim coordinated the receipt of gifts, and Lombard’s Care Coordinators are delivering the items to the families.

Further north at our Rockford Regional Office, a Care Coordinator learned that a toddler was being discharged from a transitional care facility earlier this month after being separated from her family for a year.

“This little one became part of a bustling home of five brothers and sisters who were overjoyed to welcome her home,” her Care Coordinator Shan Johnson said.

On Dec. 14, the toddler’s mother told Shan that she had no Christmas presents for the children.

Shan contacted the Rockford Salvation Army, who “without hesitation” opened their doors for Shan and let her into their warehouse on a Sunday afternoon to handpick gifts for the children. They even provided gift bags.
“I will never walk past a (Salvation Army) red kettle again without thinking about this happy miracle,” Shan said.

A big thank you to these organizations, our staff and all of our community partners for their support and service to our families throughout the year!

Miguel and Carlos spend time with Club America soccer team, thanks to their DSCC care coordination team.

One of the main ways that UIC’s Division of Specialized Care for Children (DSCC) helps children with special healthcare needs and their families is through a process called care coordination.

Our care coordination addresses each child and family’s unique needs. It can include helping a family understand their child’s diagnosis or connecting a family in need of financial assistance with the right resource. Sometimes, our care coordination involves providing experiences that simply help a special needs child be a kid.

A care coordination team from DSCC’s Chicago Core Regional Office recently used their creativity to provide one such priceless experience to two brothers with muscular dystrophy.

Miguel, 17, and Carlos, 14, are big soccer fans who live near Toyota Park in Bridgeview. The park hosts major league soccer games with players from around the world, and the teens had hoped to meet the Mexican soccer team Club America.

Miguel and Carlos’ mother reached out to their Care Coordinator Rita DeSoto and Program Coordinator Assistant Maria Carrera to see if they could help.

Maria invited their mother to the Chicago Core office to sign authorizations so she could contact the team’s marketing and promotions manager on her behalf. Rita was able to reach the manager two days before the game and with the family’s permission, wrote a letter detailing Miguel and Carlos’ condition and why they wanted to meet the team.

Thanks to Rita and Maria’s efforts, the teens were able to meet the team and take photographs and collect autographs from their favorite players. Their mother reported that they were “surprised, grateful and overjoyed.”

“Each day freedoms such as walking, running, playing, laughing, eating and breathing can be taken away from children with muscular dystrophy,” Chicago Core Regional Manager August Nall said. “The Care Coordination team communicated the family’s needs at the right time to the right people and they were able to secure a service the family wanted.”

Great work, Rita and Maria!

DSCC’s dedicated and experienced parents share advice in honor of National Family Caregivers Month.

National Family Caregivers Month in November recognizes the real-life heroes who selflessly care for their loved ones and relatives. The theme for this year’s campaign is “Caregiving Around the Clock.” We at UIC’s Division of Specialized Care for Children (DSCC) know that caring for children with special needs is truly a 24-7 job with an emotional and physical toll like no other.

In honor of National Family Caregivers Month, we asked members of our Family Advisory Council to share their advice to help other parents and caregivers manage the stress and make sure their own emotional and physical health is not neglected. Read on for some great tips and helpful insights from two of our dedicated and experienced parents, in their own words.

Elizabeth Curry

Being the parent of a child with special needs can be exhausting. It can feel as though it takes every ounce of your energy and resources, with little left over. While we all want the best for our children, and to do our best to help them reach their full potential, doing so at the risk of our own mental and emotional well-being is counterproductive. We cannot be the advocates and supports that our children need if we are barely functioning ourselves. I have several children with a variety of needs, and over the years have learned the hard way that it is vital that I take care of myself as well as my children. Here are some of the ways I have found that help me to recharge:

1. Build a support system. You need other people in your life who understand your challenges and are there for you. I know this is often not an easy task, as parenting a child with special needs can be extremely isolating. Ideally, your support system includes other special needs parents, as they ‘get it’, as well as others who support you even if they don’t have first-hand experience. It is important to have a friend whom you can call and burst into tears at. It is important to have people who can be yours and your child’s cheerleader. It is just important to have other people in your life. Building such a support system can take time and effort. I am particularly aware of this since we recently moved from a place we have lived for over 25 years to an entirely new area. I left a large support system where I had a lot of social capital, and am now faced with building it all from scratch.
2. Take care of yourself. This means that you do your best to get enough rest, eat foods that are good for you, and get some exercise. In order to help our children, we need to be functioning. All too often, we let our children’s needs take priority while our emotional and physical health suffers. This does not help our children. I find the exercise piece to be particularly challenging, but there was one particularly stressful time in my life where I took up running. I needed both the time alone and the physical activity to give me a small window where I wasn’t dealing with the unpleasant things that were taking up all my time. It gave me just enough breathing room to get through the hard stuff.
3. Do something just for you. I love to make things… sew, knit, spin, cook, etc. I also love to read. If I can carve out a small portion of my day to make something and to read, I am a significantly happier person, and consequently a much better parent as a result. Doing these things reminds me that I am more than just a parent to my children, even as much as I love that particular role. Doing things which bring me joy refreshes and energizes me.

Elizabeth Curry is a mother of 12 children, five of whom were adopted: two from Vietnam and three from China. She hopes that by sharing her family’s experiences she can encourage others in the trenches. When she is not taking care of children, Elizabeth writes, homeschools, sews, teaches piano, and loves reading. She also has her own blog, Ordinary Time.

 Cassie Gluck

1. It takes a village to raise a child, especially one with special needs. Reach out to organizations who might help with respite care and gather a network of family or friends who you feel comfortable with to watch your child(ren). Caregivers need time away to de-stress. Remember to treat yourself.
   

   Cassie is the mother of two sons – Kayden, 1, and Noah, who is 5 and diagnosed with a fatal neurodegenerative disease simply known as KIF1a disorder.

2. To keep a clear mind, I find it helpful to write down my appointments and tasks on a calendar and dry erase board. It helps me stay on task and prioritize. Organizing thoughts, ideas and assignments will help with the everyday anxiety attached to having a special needs child or any family really.
3. Make sure you are able and fit enough to lift those sweet babies by exercising and eating healthy. It may sound cliche but by choosing an active activity you can do either by yourself or with the family can keep you in shape to better care for others.

What I would suggest to a person with a new diagnosis: reach out! There are others out there with the same diagnosis, even if it is rare.  Can’t find anything? Start your own support group. Two years ago, when my son was diagnosed with an extremely rare diagnosis, I created the first Facebook support group in hopes to reach other families. This led to KIF1a.org and a path towards learning more about KIF1a associated neurological disorders.  You are not alone.

Cassie is the mother of two sons –  Kayden, 1, and Noah, who is 5 and diagnosed with a fatal neurodegenerative disease simply known as KIF1a disorder. She is an advocate of the KIF1a organization (http://www.kif1a.org/) and the founder of a KIF1a Facebook support group She has a Bachelor of Arts in Social Work and is working toward her master’s degree in professional counseling.

Mokena Regional Office’s Lynda Miller honored for outstanding service to children with special healthcare needs.

Lynda Miller of Lemont is the 2017 recipient of the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) Award of Merit. The award recognizes exceptional employees for outstanding dedication and service to children with special healthcare needs.

DSCC is a statewide program that partners with Illinois families and their local communities to help children with special healthcare needs connect to the services and resources they need to reach their full potential. We serve thousands of families each year in all 102 Illinois counties through a network of nurses, social workers, speech pathologists, audiologists and other team members in 12 regional offices.

Lynda is a Program Coordinator Assistant in DSCC’s Mokena Regional Office, working with Care Coordinators in her office to develop a plan of care for each family that addresses their child’s medical, social, behavioral, educational and financial needs.

“Lynda exemplifies DSCC’s mission to partner, help and connect with families and communities to improve the lives of children with special healthcare needs and put them at the center of a seamless support system,” DSCC Executive Director Thomas Jerkovitz said. “Lynda has touched countless lives during her nearly 30-year career and is an unwavering champion for our organization and the families we serve.”

Colleagues across the state say Lynda’s primary focus and concern is giving DSCC families the best service possible and treating them with kindness and respect. Lynda is also praised as an effective problem-solver who is willing to step outside of her comfort zone to learn something new, hard or time-consuming to get the job done.

Lynda, who was also nominated for the 2016 Award of Merit, said she enjoys all facets of her job. “I love helping whenever and wherever I can,” she said. “I have been lucky to work with a lot of people who have mentored me along my DSCC career.  I wouldn’t have the knowledge and ability to do what I do without their help and assistance along the way.”

DSCC staff nominated five of their colleagues for this year’s Award of Merit. As the winner, Lynda receives an Award of Merit memento, a $2,000 award and recognition from the Executive Director.

The other 2017 nominees are:

• Dawn Brzostek, Customer Service Assistant, Rockford Regional Office
• Cherie Dalbke, Care Coordinator/Speech and Hearing Consultant, Chicago Core Regional Office
• Diana Maldonado, Program Coordinator Assistant, Lombard Regional Office
• Glenda Rahn, Program Coordinator Assistant, Champaign Regional Office

Congratulations, Lynda, and a big thank you to all of our nominees!

500-plus families and professionals attended the 13th annual Stepping Stones of Transition Conference in Springfield

More than 500 families and professionals learned valuable information about helping adolescents with special needs/disabilities prepare for adulthood during the 13th annual Illinois Statewide Transition Conference on Oct. 23-24 in Springfield.

The conference, titled “Stepping Stones of Transition,” is aimed at youth, parents, caretakers, vocational professionals, healthcare professionals, educators and other key stakeholders  Participants were invited to discuss the possibilities for students with disabilities in the areas of independent living, education and training, employment, community integration, health care and self-advocacy. Youth and young adults with special healthcare needs learned how to plan for their future and life after high school, how to sort through the maze of resources and what skills are important to develop to prepare for adulthood and meet their goals.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) served on the steering committee for this year’s conference and covered the conference-related expenses for 20 of our 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 the delivery of adult services.

Former DSCC participant Ashley Santiago-Sanchez, 21, attended the conference with her parents and younger brother. Her father, Ivan, said his family wanted to gain as much information and resources as possible to help foster her independence and prepare for adult life in the community.

Saurabh and Mukta Agarwal attended with their teenaged daughter, Radhika, who currently is enrolled with DSCC and requires skilled in-home nursing. Their Care Coordinator made sure that DSCC paid for the family’s registration, hotel, transportation and cost for a daytime nurse for Radhika.

“A lot of times families (like ours) don’t know the options,” Saurabh said of planning for the future with a medically complex child.

Saurabh said he was especially touched by keynote speaker Matt Cohen, who spoke about his experiences with his son and how he learned to determine transition priorities for students and ensure their real-life needs are met. He and Mukta also appreciated the opportunity to make connections with other families and professionals.

“All of the information was very helpful, and now we have to do our homework,” Saurabh said.

Click here to view photos and more information about this year’s conference.

The 2018 Illinois Statewide Transition Conference is scheduled for Oct. 25-26 at the Westin Chicago Northwest Hotel in Itasca.

Regional offices donate “birthday cakes” filled with items for nonprofits across Illinois.

A dozen charities across the state are benefiting from a special service project in honor of the University of Illinois at Chicago’s Division of Specialized Care for Children’s 80 years of service to Illinois families.

Since 1937, the Division of Specialized Care for Children (DSCC) has partnered with Illinois families and communities to connect children with special healthcare needs to the services and resources they need to reach their full potential. For its 80^th birthday, DSCC’s employees planned a special birthday cake competition with a twist to benefit the organization’s numerous community partners.

All employees at our 12 regional offices and central administrative office in Springfield were invited to work together to collect the cake ingredients. However, no cake mix and frosting was allowed. The “ingredients” had to be items that can be donated to a local charity of employees’ choice. These items could include canned goods, paper goods, school supplies, personal hygiene products, diapers, etc. – whatever the selected nonprofit needs. The donated items were brought to the office on Friday, Sept. 22, and employees used the donations to build a “birthday cake” during their morning and lunch breaks.

Our regional offices selected charities ranging from crisis nurseries and pregnancy care centers to homeless and domestic violence shelters. Photos and descriptions of the various cake creations are posted on our Facebook page here.

We are extremely proud that our staff members’ generosity and creativity could help so many worthy causes. We couldn’t ask for a better way to celebrate 80 years!

DSCC Care Coordinator partnered with Mount Vernon Lion’s Club to make the gift a reality.

Fifteen-year-old Allie Riley of Mount Vernon wanted a bicycle of her own so she could go on rides with her family and friends. A traditional bicycle, however, was not a safe option for Allie as she is visually impaired and has problems with her depth perception.

Allie’s mother, Melinda, did some research and found some tricycle options for Allie but couldn’t afford the price tag. Melinda went to the family’s Care Coordinator, Donis Vail, from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for help.

Allie has been enrolled with DSCC since she was an infant. Donis, who works in DSCC’s Olney Regional Office, used her community connections to find funding for the tricycle and pull off a sweet surprise for Allie.

Knowing that Allie is a big fan of musician Jimmy Buffett, Donis found a Buffett-themed adult tricycle that’s cream with green tires, a green seat and a parrot-shaped bike horn. She then started researching funding options. When she reached out to the Mount Vernon Lions Club, they offered to pay the entire cost of the tricycle.

Donis and the Lions Club then invited Allie and Melinda to the club’s meeting last month to surprise her with the tricycle. Melinda told Allie that they were going to a bank meeting so she wouldn’t suspect.

When Allie arrived and saw her new tricycle, she was “over the moon,” Melinda reports. Allie also immediately stipulated that her new wheels are not merely a tricycle but a “beach bike.”

Our Care Coordinators are pros at identifying a family’s needs and working with local community organizations to connect the family and youth with the services and resources that can help. The Mount Vernon Lions Club’s generous donation is a wonderful example of these connections and how much they benefit our participants.

A huge thank you to all involved, and happy riding, Allie!

The Ruder family designed and donated special “rocket pack” Radio Flyer wagons for children who depend on medical equipment.

Kara and Logan Ruder understand how difficult it can be to care for and transport a technology-dependent child.

Their 3-year-old twins, Beau and Brooklyn, were born 12 weeks premature. While Brooklyn grew to be healthy, Beau was diagnosed with chronic lung disease and a combination of four heart defects called tetralogy of Fallot.

Beau spent seven months total in intensive care at OSF HealthCare Children’s Hospital of Illinois. During that time, he became enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC), which has helped the Ruders understand and maximize Beau’s insurance coverage and connected them to service providers, such as nursing agencies and durable medical equipment suppliers.

Once Beau arrived home, Logan jokes that his son “brought half the hospital” with him. Since he requires round-the-clock oxygen through a nasal cannula, Beau needs an oxygen tank as well as a monitor, suction machine, medicine pump and feeding pump for his gastronomy tube

It was overwhelming for the family to try to leave the house, especially when Kara would have to take both kids to Beau’s many medical appointments. A stroller just couldn’t comfortably hold all of the equipment and keep it accessible for when Beau needed it.

The inspiration for a better way struck after the twins received a Radio Flyer wagon for their first birthday. Logan developed a special attachment for the wagon to hold Beau’s oxygen tank and still give him plenty of room. The Ruders describe how the design came about in a touching video for OSF HealthCare Children’s Hospital of Illinois.

The wagon’s “rocket pack” was such a hit with Beau and others who saw it, the Ruder family decided to make additional wagons to donate to Children’s Hospital of Illinois. You can read more about the family’s story and their donation in the hospital’s Children First publication.

“When you’re a dad like me who’s not overly medical, there’s not much you can do for a kid like (Beau) who’s so sick,” Logan said. “To have something like this (wagon) that I can do for him, it makes me feel good.”

He would love to create more wagons for children who could benefit from one and encourages interested families to call him at (309) 360-3410.

Logan said he hopes the wagons can give children in similar situations a feeling of normalcy.

“When you pull a kid through the hospital in a wagon, it helps them feel like a kid,” he said.

We’re proud of the Ruder family’s kind hearts and desire to help other children with complex medical needs. They truly are an inspiration!

The American Red Cross is installing free smoke alarms as part of its Home Fire Campaign.

The American Red Cross and its partners have launched the Home Fire Campaign to reduce deaths and injuries caused by home fires by 25 percent over five years. The American Red Cross asks every household in America to take two simple steps to help save lives: check or install smoke alarms and practice fire drills at home.

As part of this effort, the Red Cross will provide and install smoke alarms in your home at no charge. To request a free installation, you can fill out this form and return to Jamie Beaver, Disaster Program Manager, at 2674 N. Main St. in Decatur or Jamie.Beaver@redcross.org.

You can also request a free smoke alarm installation at https://getasmokealarm.org/. After submitting your request, an American Red Cross representative will be in touch with information on installation availability in your area.