As 7-year-old Vivienne Siciliano plays a board game with her mom and older sister after school, her eyes dart to her competitors and she gives a sly smirk.
Vivienne is the youngest now, but her mom says she may soon be a big sister. Her mom, Candice Siciliano, describes her daughter — known as “Vivi” — as sweet, brilliant, and compassionate.
But Vivi also has a condition that can present as behaviors that are inconsistent with her usual bright personality.
“Increased struggles with anxiety, OCD, being unable to wear clothes, unable to tolerate different sensations,” Siciliano explained.
She added the condition sometimes disrupts Vivi's sleep or sparks behavioral issues like rage, irritability, and the inability to cope with external triggers.
The condition is called PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. According to the National Institute of Mental Health, PANDAS is caused by an autoimmune response to an infection, like from strep bacteria, where antibodies attack parts of the brain.
That leads to “flare-ups” of these kinds of symptoms, which can sometimes last for months.
And when those symptoms flare up, they can affect Vivi’s success in a classroom. That’s why her mom has fought to get her supports that could help her succeed.
The right to an education is guaranteed under a 1970s federal law, but some students with disabilities still struggle to get the support necessary to achieve their academic goals. Vivi has been one of them.
Siciliano said her daughter started to experience symptoms of PANDAS when she was about 2½ years old. She secured early intervention to help Vivi work through the symptoms of her disorder, but that only lasted through pre-K.
So when her daughter was entering kindergarten in the Penfield school district, Siciliano fought to get her daughter support, like occupational therapy and sensory breaks. Vivi was granted a 504 plan — a document meant to help school staff ensure she would receive the accommodations she needed to succeed.
It seemed to work.
“We were told she had an overall successful year last year in kindergarten, after what was a very difficult process, getting ... appropriate accommodations for her going into kindergarten,” Siciliano said.
But for Vivi, first grade has been a different story. She entered the school year amid a months-long flare-up, and the supports Siciliano expected would remain in place from last year were not guaranteed.
It wasn’t until nearly two months into the school year that an occupational therapist visited the classroom, according to an email from Vivi’s teacher to Siciliano.
Vivi also doesn’t have an aide, which Siciliano said her daughter needs when a flare-up happens — something as unpredictable as Rochester weather, Siciliano said.
So when Vivi's symptoms appear, there’s been less support in place to keep her symptoms from escalating. Some days, that’s meant urinary incontinence during lessons or extreme discomfort wearing clothes.
“The (occupational therapy) piece would really be helpful for her to be able to do something so simple as getting dressed in the morning,” Siciliano said, adding that her daughter is fully capable of doing so, but disordered sensory processing keeps her from being able to tolerate the pain of wearing the fabric.
“This is a neurological disorder that causes these sensory flares,” she added. “At some point, if she doesn't have the additional supports that she needs and continues to regress, it will go to the point where we won't be able to leave the house.”
Vivi and her family aren’t the only ones struggling to work within the system.
Education specialist Dan DeMarle said there are plenty of challenges that families can run into when trying to access school-based disability services for their children.
One is navigating the difference between a 504 plan, like what Vivi has now, and an IEP, or and individualized education plan. Vivi had an IEP in pre-K, but it didn’t carry over to kindergarten and first grade.
Simply put: IEPs are backed by funding from the district, the state, and the federal government, but 504 plans are not funded.
“It's kind of like, you know, you met in the bar and you had a handshake agreement, ‘We're going to give you speech,” DeMarle said. “A 504 is like you sat down with a contractor and you wrote on a napkin, ‘They're going to build the house. This is how much it's going to cost.’ Where an IEP is there's an actual 20-page written contract that's been co-signed and signed and witnessed.”
DeMarle said school districts in New York state have an incentive to be selective with the number of IEPs they accommodate because each IEP signifies a financial “burden."
"It's not just, ‘Oh, we're going to spend $5,000 extra this year on your reading program or your OT or whatever — we potentially have to do that for a decade or more,’” DeMarle said.
Tasha Potter, assistant superintendent for equity and access at the Penfield Central School District, oversees special education. She said the percentage of students in the district who are classified as needing special education is low.
“I think what's most important is paying attention to what the students are telling us that they need," Potter said. "That really is the driver."
Potter said Vivi’s case was not brought to her attention.
“I apologize that, you know, we haven’t been able to dig in a little bit more deeply to support this student,” she said.
Siciliano said she didn’t know Potter oversaw special education. Since speaking with WXXI News, Potter and Siciliano have been in contact.
Now, Sicilano said, her daughter has been granted occupational therapy and sensory breaks at school as well as counseling sessions on an as-needed basis.
But Siciliano said it’s too little, too late — she’s already at a breaking point and is weighing legal options to get her daughter an IEP.
“My ultimate goal is what it was from the beginning," Siciliano said. "Which was just that I can send my daughter to school with peace of mind, knowing that she's in … a supportive environment that meets her needs ... and not have me having to send messages every day to this person or that person, making sure that she's in a safe place."
DeMarle said he often sees parents struggle to get their children supports for their disabilities.
“The thing I have to tell parents all the time is to remind them that even though that kindergarten teacher may actually love your kid, they're just a government bureaucrat," he said. "It's just the fact that schools are multimillion-dollar government bureaucracies.”
He said parents need people to educate them about what services are available, what their rights are, and how school systems work “so they can truly partner with the school districts moving forward to get their kids what they need.”
