Family life for the Rabins is a bit more complicated than most.
“When I was 16 in high school, that’s when I developed the back pain and going to the doctor,” Amy Rabin said.
Amy was diagnosed with psoriatic arthritis, which involved intense pain, swelling, and sometimes not being able to walk.
“It’s not your grandma’s arthritis,” Rabin said.
Even though she is married and a mother of three at her home in Perry County, Rabin’s struggle with arthritis is far from over. The condition can be hereditary, and showed itself in her oldest daughter, Ava.
“When Ava was three years old, she would wake up and say her knees felt like wood,” Rabin said. “It wasn’t real consistent. But then when she was nine, she actually collapsed.”
Rabin paused to wipe away tears.
“She collapsed on the soccer field,” she continued. “And we knew then.”
Almost four years later, middle school student Ava Rabin was still in pain.
“Like, my fingers are very swollen and it’s like an achey pain,” Ava Rabin said. “And I have that almost constantly in my back and my knees and my ankles.”
That meant giving up activities like dance and basketball,while fighting through things that used to be simple while on chemo drugs and other strong medications.
“Sometimes it’s hard to get up in the morning,” Ava said.
It’s more common than you think
The Centers for Disease Control says nearly 300,000 children have been diagnosed with juvenile arthritis. But Ava Rabin’s story is part of something bigger.
Ava’s arthritis is an invisible illness. So is Lyme Disease, Crohn’s Disease, Lupus, and so many others. What someone sees on that outside doesn’t reflect what’s happening on the inside.
In other words, Ava doesn’t look sick – and that’s made her middle school experience even more complicated.
“She’s had problems getting the help she needs,” Amy said of her daughter. “Not necessarily with the physical. It’s with the cognitive that we’ve really struggled.”
Pain affects your brain
“If I were to pinch you, it hurts a little bit,” Penn State Hershey Med pediatric rheumatologist Dr. Natalya Gaffney said. “As soon as I stop, the pain goes away. But when kids have chronic pain, that simple pinch can be excruciatingly painful.”
Dr. Gaffney is Ava’s doctor. She says when Ava’s brain is zeroed in on that pain, she can’t give 100 percent to, say, her spelling test.
“You can’t get all your work, like, from your mind on the paper,” Ava said. “And you’re trying to go as fast as you can because everything hurts.”
That means, even though Ava is a good student, she’s gotten notes from teachers asking her to “please study for the next [test].” She’s been accused of not trying her best, or even of faking.
“It’s real,” Dr. Gaffney said about the effects pain has on the brain. “It’s a real thing and it should be evaluated and taken seriously.”
Getting schools on board
When appropriate, such as in Ava’s case, Dr. Gaffney will send notes to schools asking for extra time on tests, more breaks during the school day, and opportunities to space out tough classes.
“Oftentimes, the school doesn’t really understand why we’re asking for those things,” Dr. Gaffney said.
She’s found the response can be totally different from one district to the next. Those decisions are subjective, and the Rabins say that’s a problem.
“Most of us work off procedures,” Ava’s dad, Dan Rabin, said. “If a mechanic has a problem with a car, they have procedures to follow to fix that.”
But the people who run Pennsylvania’s Department of Education say it’s not that easy.
“Schools do have the autonomy to ultimately decide how they’re going to support and accommodate student learning,” Deputy Secretary for the Office of Elementary and Secondary Education Matthew Stem said. “And at the Department, we don’t have the authority to dictate to schools how they leverage their personnel to do that.”
Stem says it’s hard to standardize something that exists on a spectrum, like chronic pain. He does wish more districts would use the Department of Education’s training resources. Stem says he’s also open to adding more specific information about invisible illnesses.
“We want to make sure that we’re addressing all of those needs in as precise of a manner as we can, while recognizing some of the inherent ambiguity,” Stem said.
“It puts the school in a tough place,” Dr. Gaffney said. “Because they need to try to interpret when it is appropriate and when a child may be trying to take advantage of a situation.”
But Dr. Gaffney says that’s not her concern with Ava.
“School’s awesome,” Ava said with a big smile. “Some people are like, school sucks. But I love school so much.”
“She wants to be a doctor,” Amy Rabin said, as she started to tear up. “I want that to happen. So her education is so very important because she’s not going to be able to depend on her body. She’s really going to need to use her mind.”
What does this mean for you?
The Rabins say their fight for cognitive accommodations at Susquenita School District isn’t just about Ava. It’s about all the families battling invisible illnesses who don’t have the same resources.
“Having a kid who’s sick, the weight of that – it’s just consuming,” Amy Rabin said.
“Don’t give up hope,” Dan Rabin said. “Don’t stop fighting. Things can get tough and you just have to keep going.”
Susquenita School District administrators did not return ABC27’s calls or emails.
Below are resources Pennsylvania’s Department of Education provides to school districts:
- Teachers’ Desk Reference: Chapter 15/Section 504 Services: http://pattan.net-website.s3.amazonaws.com/images/2015/04/20/TDR5_2_Chpt15_504_415.pdf
- Americans with Disabilities Act, Section 504/Chapter 15, and More – http://www.pattan.net/category/Resources/Handouts/Browse/Single/?id=4de7a044cd69f93a195e0000
- Accessible Instructional Materials in PA: Responsibilities of the Local Education Agency (LEA)-http://www.pattan.net/category/Resources/Handouts/Browse/Single/?id=4db5b478cd69f95e1b0d0000
- Community on Transition Conference 2013 – Session 714 – There is no IEP in College – http://www.pattan.net/Videos/Browse/Single/?code_name=community_on_transition_conference_20136
- Brain Steps Webinars (Section 504 plans are referenced to provide students with TBI necessary accommodations for reentry into school)
Return to Learn Progression: School Strategies and Why Concussion Management Teams are Vital – http://www.pattan.net/category/Resources/Handouts/Browse/Single/?id=54eca626140ba0f85c8b4576
- BrainSTEPS: Students (K-12) with Concussion – Educational Impacts, Symptom Based Accommodations, Return to School Progression -http://www.pattan.net/Videos/Browse/Single/?code_name=brainsteps_students_k-12_with_concuss
- USDE recommendations: https://www2.ed.gov/about/offices/list/ocr/docs/hq5269.html