There are many local resources that provide care and education for kids with chronic conditions, as well as emotional support for their caregivers and loved ones.
Caring for kids with long-term illnesses or injuries is a multi-faceted situation that involves support from the family, community, medical professionals and educators. The families and loved ones of these children face many hurdles, but there are a number of options and agencies that can help children thrive regardless of their physical or mental challenges.
It’s helpful to discuss the child’s condition with teachers, counselors and medical professionals, and to be aware of laws such as the federal Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA).
Education is often a primary concern for a chronically ill child. Setbacks, long hospital stays or emotional issues may prevent a child from attending a traditional school. The child could fall behind academically, which often compounds stress and frustration. Private tutors can help kids stay on pace with their schoolmates, but an increasing number of families are turning to online schools.
One school that supports and educates children with chronic illnesses or behavioral issues is University View Academy, a Baton Rouge-based accredited school with a student body comprising hundreds of children and young adults around the state.
University View is public and free to attend, and offers lesson plans from more than 100 licensed teachers. The online school gives children the chance to succeed in an academic atmosphere with specialized attention, a personalized curriculum and mentorship from school counselors and contracted social workers. University View Academy also offers advanced placement high school courses, which makes it possible for a student with dual enrollment to graduate from high school with an associate’s degree.
Students can participate in live learning sessions by logging in to a designated chat room where their teachers can be heard and seen on the screen. (Laptops are provided to every student.) Pupils can interact with peers and ask teachers and each other questions. They learn through lectures, demonstrations and videos.
For Brandy Tamplain, who has a son with autism and a daughter with diabetes, the online school has vastly improved her children’s lives with a supportive environment that has allowed them to stay on track academically. From their home, the Tamplain children can complete coursework at their own pace, working in virtual classrooms and participating in live lessons. Brandy says her son fares better academically when social issues aren’t a factor. Before online coursework, he was being pulled out of 70 percent of his classes due to behavioral issues.
“It was a lot of face time with a teacher and interaction with other students that was lost and unable to be recovered,” Tamplain says. “It led to hours of impossible homework and many breakdowns and tears.” At University View Academy, he is able to obtain a special education accommodation and scheduling flexibility from educators.
Tamplain estimates that her children spend about 12 hours a week in live sessions or watching recordings. “It’s really great to have that interaction, and I feel that this format is preparing them for continued education,” she says.
Tamplain’s teenage daughter works ahead when she’s healthy so she doesn’t fall behind when she requires treatment. Her daughter’s schedule is “unusual, due to medical appointments,” Tamplain says.
University View Superintendent Lonnie Luce says the school is a nice fit for students who “can’t be in a brick-and-mortar school five days a week.” Many students enroll temporarily until they can return to a traditional education setting.
The students also can participate in offline activities. The school hosts field trips around the state and can pair the students with tutors. There’s even a spring prom for the high school-aged crowd. The school recently partnered with eLearning Academy — a learning system based on formalized teaching with the help of electronic resources — in Houma, Thibodaux and Baton Rouge. Additionally, there are opportunities throughout the year for children and families to meet their teachers and staff face-to-face.
“They have on-site locations that the parents can pay to go and send their kids on certain days of the week,” Luce says. “The teachers help move them forward.”
Tamplain says the online coursework has taught her children to master self-scheduling, time management and communication, and to pay attention to detail.
“It’s not impossible but it takes effort,” Tamplain says. “For me, the end goal of this type of education is for my children to master resilience, flexibility and critical thinking skills while participating in and enjoying our sometimes-hectic lives.”
Luce points out that the students, particularly during their first years, are required to have a mentor, whether it’s a parent or a hired professional. The addition of an adult guide steers the child toward success and can help him or her stay focused and on task. Once the kids get older, many of them gain the ability to manage their coursework and schedules on their own.
“We are interested in our students becoming proficient and self-sufficient,” says David Strauss, University View’s special education director. “We also want them to be successful. We want them all to graduate high school. We want our students to succeed.”
For many people, pets bring joy and provide comfort, but service animals for people with chronic conditions can save lives and teach children to manage their symptoms.
Tamplain’s daughter soon will adopt a service dog from Southern Diabetic Retrievers in Marrero. The retriever can alert her when her blood sugar is out of range, so she can treat it quickly before it becomes dangerous. Once she’s learned to monitor her own symptoms and to handle her service dog, Tamplain’s daughter may be able to return to a brick-and-mortar school with her canine companion. Service dogs can help with a range of conditions, including anxiety, blindness, autism and physical limitations. Louisiana’s service animal law and the federal Americans with Disabilities Act guarantees people with disabilities may bring service animals to all “public accommodations.”
Comprehensive medical assistance
Dealing with a chronic illness can affect the whole family emotionally and mentally — even if it’s a physical ailment. Children’s Hospital New Orleans offers a number of services for children affected by chronic illness or disability.
The Autism Center provides treatment and offers educational seminars to promote understanding and better quality of life for children with autism. Children’s Hospital also has a strong occupational therapy program that helps participants gain independence.
The hospital’s Calhoun Campus focuses on behavioral health, emphasizing the four C’s: calming, coping, communicating and cognitive behavioral skills. Patients who are admitted to the program are experiencing acute psychiatric and emotional symptoms that interfere with their ability to function at home or school. The aim is to teach patients to take responsibility for their behavior, and families are encouraged to participate in group sessions.
Stephanie Brooks, whose nearly 2-year-old son was born with a rare disorder called septo-optic dysplasia, already meets with therapists on a weekly basis to help understand and improve his condition, which causes blindness in both eyes and deafness in one ear, as well as an underdeveloped pituitary gland. He currently sees three therapists, paid for by the state’s Medicaid program, for physical, occupational and speech therapy.
Due to her son’s condition, Brooks is unable to work and spends most of her days with him, researching and learning about this syndrome. As a single mother, she often feels isolated and says it’s a constant struggle. Brooks is considering moving to Baton Rouge once her son reaches school age to enroll him in a program at the Louisiana School for the Blind. In the meantime, she stresses the importance of finding support from parents in similar situations.
“It is nice to have other families to talk to,” Brooks says. “Some of them have sicker kids than I do — and we can talk together about everything. It’s nice to have someone that understands what you are going through.”
Her advice for parents of chronically sick children: “Take things one day at a time and do your best. Do your research, call everyone you possibly can for information. Don’t take no for an answer.”
Other helpful resources:
Children’s Hospital Occupational Therapy (www.chnola.org/occupationaltherapy)
Cognitive Behavioral Therapy Center of New Orleans (www.cbtnola.com)
Department of Children and Family Services (www.dcfs.la.gov)
ELearning Academy (www.elearningk12.com)
Exceptional Lives Louisiana (la.exceptionallives.org)
Families Helping Families of Southeast Louisiana (www.fhfsela.org)
Healthy Children, from the American Academy of Pediatrics (www.healthychildren.org)
Louisiana Disability Legal Resources (www.ldlr.org/resources)
MedicAlert Foundation (www.medicalert.org)
Southern Diabetic Retrievers (www.southerndiabeticretrievers.org)
University View Academy (www.universityview.academy)
WAGS (Working Animal Guide Society) Louisiana (www.wagslouisiana.org)