“Alex is happy at school,” she said. “I want him to be happy.”
It’s really that simple. Or at least it could have been.
Rene has been working to get Alex back into school since last spring, when he was placed on hospice care due to a terminal heart defect. At that time, Rene worked with his medical team to create an advance health care directive for Alex which includes a “do not resuscitate”, or DNR order.
Discussions with school officials broke down when school officials said state law would not allow them to follow the DNR in the advance directive should his heart fail while he is attending school.
In Alabama, advance directives are only recognized for people 19 years old and older. At last count, only 17 states recognize advance directives for minors. Further, most school districts in the United States do not even have a policy regarding advance directives for students attending their schools.
If Alabama had a law like that, Alex could have been back at school long before now, according to Rene. Rene contacted Rep. Mac McCutcheon (R-Huntsville) for help. McCutcheon has since expressed interest in introducing a bill in the upcoming legislative session to allow Alabama to recognize advance directives for minors.
Last September, looking for a way to spare school officials from having to follow the advance directive, Rene offered to attend school with Alex for four hours each week, giving her authority to direct medical care for Alex. School officials refused, citing school board policy that does not allow parents to remain with their child at school.
After being told by school officials to make her request to the school board, Rene spoke publicly at the district’s October board meeting, where a local television reporter first reported the story. The story quickly gained national attention, and Rene appeared on the television show “The Doctors” in December.
Ultimately, the resolution allows Rene, along with Alex’s hospice nurse to remain on campus while he is attending class. If a medical event happens while Alex is at school, Rene will be there to direct his medical care.
This allows school officials to comply with state law. And it allows Alex to get back to school, if only for a few hours each week.
In addition to his medical difficulties, Alex has autism and receives special education services at school. Until health problems kept him from attending school regularly at the end of last school year, Alex’s school day was spent in a classroom with other children with severe disabilities. Rene agreed with his placement in a self-contained classroom after doctors found that attending school alongside non-disabled peers caused Alex too much anxiety and increased stress on his heart.
Rene explained that many teenagers with severe disabilities “don’t get to live normal teenaged lives. They don’t get to play ball after school.”
“Life is different for us. [Going to school] is what makes him happy, and that’s the place he can go hang out with his friends, where he feels like a normal teenager. That’s his normal. That’s where he’s happy.”
While working toward a resolution with school officials, Rene and Alex have been near-constant companions. And that’s been a good thing, she says. “It’s given us time to spend together.”
Rene’s grandmother cares for Alex while Rene works 12-hour shifts as an emergency room technician at a local hospital.
Because Alex’s medical condition is fragile, there are few other people who Rene can trust with his care, which severely limits his social activities. “It’s not like I can just drop Alex off at the local church when they’re having a party or something,” she said.
In addition to having friends improve his quality of life, being at school allows Alex to practice his social skills, which is important for children with autism, she said.
Rene is quick to add that socializing isn’t the only reason for Alex to attend school. School is also about learning.
Rene heaps praise on his special education teachers and aides, appreciating their talents and acknowledging their expertise in helping Alex achieve in areas that regularly surprise her.
Even though he “may never be good at math”, Alex’s visiting homebound teacher recently “had him doing chemical and physical reactions,” she exclaimed.
Not knowing what the future holds or how long Alex will be healthy enough to attend school, Rene is looking forward to seeing Alex get back, at least part-time, to his regular routine.
“For him to be around his friends again, and knowing how much he loves his teachers, I know that’s a place where he’s happy.”
[We were unable to reach Limestone County officials prior to publication of this article. This article will be updated with any comments they provide about Alex’s return to school.]
Further Reading on DNRs
The School-Based Do-Not-Resuscitate-Order, Jessica Adelman, 13 DePaul J. Health Care L. 197 (2010).
In 2000, and again in 2010, the American Academy of Pediatrics issued a policy statement outlining the appropriate role of pediatricians in helping families of children with complex chronic medical conditions collaborate with school officials to work out plans to honor DNR orders for students who attend school.
The National Association of School Nurses issued a position statement in 2014 to help guide school districts to craft policies and procedures to allow students with complex chronic conditions to attend school.
Chronic health conditions that involve special healthcare needs affect an estimated 19.2% (14.2 million) school‐age children.
The AAP [American Academy of Pediatrics] estimates that, on any given day, there are 2,500 adolescents and 1,400 preadolescents who are within 6 months of dying from their chronic condition, such as end‐stage heart, liver, kidney disease and cancer.
According to a Centers for Disease Control and Prevention survey, the percentage of schools where health services staff reported the need to follow a DNAR [“do not attempt to resuscitate”] order increased from 29.7% in 2000 to 46.2% in 2006.
Growing populations of students with chronic health conditions ‐‐ including terminal and irreversible illnesses, congenital defects, injuries, and malignancies, where death may be the expected outcome ‐‐ are now routinely attending school.
Children with special healthcare needs are entitled to a free and appropriate education in the least restrictive environment (U.S. Dept. of Justice, 2005).
Whenever possible, students with chronic or terminal conditions belong in school in order to access their education. Students benefit from the psychosocial and emotional benefits of interacting with peers and maintaining their daily routine.