MANAGING NEWS EDITOR
While mother of three Stacey O’Rourke stood in her kitchen loading the dishwasher, she recalled a single phone call last summer that changed her life. Her daughters’ home aid called in a panic saying O’Rourke needed to come home right away. Megan had coughed up a bloodied tumor that highly resembled brains. O’Rourke rushed home and they went straight to the emergency room.
The doctors said it was rhapdomyosarcoma — cancer of the uvula in the back of the throat. The O’Rourkes have three daughters with autism. Though not new to the medical world, this was unfamiliar territory.
The sheer fact that Megan is autistic made the chemotherapy treatment more taxing. O’Rourke said she rarely slept because she had to be on constant watch to make sure Megan wouldn’t rip out or bite the IV lines and orally ingest the medication. Megan had to be sedated for all of her treatments.
Although Megan does not understand the concept of cancer, chemotherapy or death, her mother said she developed an anxiety mechanism that would cause her to vomit the moment she entered the hospital for treatments. She had to be put on antidepressants.
Megan O’Rourke is one of the university’s newest B+ Heroes matched with the Delta Sigma Pi Professional Business Fraternity. She attended UDance for the first time this year having finished six rounds of chemotherapy in December. Her CT scans and MRI are clear, but she will remain on antibiotics through March to strengthen her immune system.
“It’s hard for me,” O’Rourke said. “Just with the autism alone, it’s heartbreaking. I don’t even know how I made it through it.”
The O’Rourkes’ cancer fight comes after years of raising and supporting three children with autism. It’s not easy, Stacey O’Rourke said.
According to the Autism Spectrum Disorder Foundation, parents of autistic children nationwide brunt extreme costs that can “turn a middle-class income family into a low-income family.” Statistically, families with autistic children earn 28 percent less than non-autistic families.
Within the state of Delaware, 85 percent of those surveyed said they stopped working outside the home, according to the Delaware Statewide Needs Assessment Survey.
Annalisa Ekbladh of the university’s Center for Disabilities Studies is the program manager for the autism initiative. She said families with autism are likely to reduce or stop work to care for their children and spend over $6,000 per year on medical care.
“Currently in Delaware we have very limited after-school care opportunities that would support children with autism,” Ekbladh said.
Parents often have to find their own care in these situations. Parent navigator Heidi Mizell at Autism Delaware said families apply for developmental disability because it is not easy to find someone qualified to babysit autistic children.
“There’s a little bit of funding, but it’s never quite enough,” Mizell said.
As O’Rourke described her daughters and the costs of supporting them, she moved on from loading the dishwasher to curl her hair and put on makeup. She waved the curling iron around as she chatted continuously.
Her girls are entirely dependent on her and her husband Timothy. Their schedule is busy and extremely regimented, she said as she flipped through a thick binder, which functions as their family planner that maps out school meetings and conversations with Medicaid.
Her eldest daughter, Katelyn, 10, was diagnosed very early at 16 months. O’Rourke was already six weeks pregnant with the twins at the time of the diagnosis.
Katelyn is the most severe on the autism spectrum. While O’Rourke said the spectrum is difficult to define, she said her daughter’s I.Q. is very low and she is considered Intellectually Disabled (I.D.). She is entirely nonverbal and has no motor skills.
The signs O’Rourke saw with Katelyn — lack of eye contact, lack of response to use of names — were showing up again with her two toddler daughters, Megan and Julie, now 9, who are identical twins.
Higher functioning than their elder sister, Megan is considered moderately I.D., while Julie is mildly I.D. While they are verbal, they communicate in basic “I want” and yes/no statements.
All three girls attend the Delaware Autism Program, which is a full-time public school that is highly regarded around the country. The girls work with psychologists, speech therapists and educational therapists, to name a few. They each have an Individual Education Plan (I.E.P.), which is a legal document that entitles each child to free appropriate education.
The O’Rourkes also have two aids come to the house Monday through Friday to help with the girls. She said she has even hired university nursing students in the past and paid out of pocket for their time.
While there are public programs that offer services for free, like the Division of Developmental Disabilities Services which offers respite dollars for parents, families still spend money out of pocket when it comes to therapists, consultants and other incidental costs.
O’Rourke pointed out the locks she had put it in the cabinets around the kitchen. Breakable items must be out of reach, she said as she looked around her sparsely decorated house.
When it comes to special diets, like gluten-free and casein-free, O’Rourke said at one point she was spending $90 on just two bags of groceries. There is clinical research that suggests removing gluten and casein from autistic children’s diets improves behavior.
While Medicaid in Delaware pays for things like diapers, parents pay for wipes out of pocket. Katelyn is incontinent. She said she has replaced the girls’ mattresses numerous times over the years because they have been soiled repeatedly.
Most recently, O’Rourke has been toying with the idea of putting in a home security system. The girls have figured out how to get the windows open, and she is always trying to anticipate what they will figure out next. This is an approximated $2,000 installation.
Overall, O’Rourke estimates she has spent approximately $50,000 out of pocket on Katelyn over the years in terms of diet and extra therapy. Not all people do that, she said, nor should all people do it.
“In the beginning you’re like, I’m gonna cure her,” she said. “She’s gonna beat it, she’s gonna grow out of it. I’m gonna get her so much therapy she’s gonna be better.”
Over time and having had more children, O’Rourke said she considers the financial investment when it comes to therapies and whether it’s more worthwhile to save for their retirement.
It is estimated that the cost of autism over a lifetime is between $3 to 5 million. While this is not totally incurred by the parents, it is a combination of the parents and the state. The state incurs most costs through adult services, not schooling.
Despite the financial difficulties and emotional toll of raising three autistic girls, O’Rourke said nothing has been harder than those first three weeks after Megan was diagnosed with stage 1 cancer when she thought they were going to lose her.
She was hustling back and forth between the hospital, getting the girls together and trying to spend time with all her children as much as possible. It was the aid and support of charities like The Andrew McDonough B+ Foundation, local church groups and family and friends that got her through that time.
“I’ve been a volunteer my whole life, I want to help people,” O’Rourke said. “But here I am and I need the help.”