by Michele Berhorst • April 19, 2023
Jack, 18 months old, and Angie Fariole moments before his right temporal lobectomy.
At 9 months old, Angela Fariole’s son, Jack, began having prolonged infantile seizures. The cause was a lesion on his right temporal lobe, and an MRI scan revealed that the area of his brain wasn’t functioning.
The Farioles enrolled Jack in First Steps, Missouri’s early intervention system for infants and toddlers 0-36 months who have delayed development or diagnosed conditions that are associated with developmental disabilities. Doctors made four attempts at seizure medication before surgically removing the lobe completely. Immediately after surgery, Fariole noticed a stark contrast in Jack’s behavior.
“Prior to anti-seizure medications, Jack was meeting the typical milestones of speech, social interaction and smiling, with only a slight delay in gross motor skills,” Fariole explains. “The right temporal lobe is responsible for emotional regulation, social interaction and engagement, auditory and visual processing, and impulse control. There was a loss in function from the seizures, medications and trauma from brain surgery. He did not engage with anyone after that, including me. I couldn’t sit and play with him, and no therapist could engage with him.”
Through First Steps, Jack received physical, occupational, speech-language, and behavioral therapy for more than a year with little to no progress. Eventually, the Farioles were referred to John Constantino, MD, then director of the Division of Child and Adolescent Psychiatry at Washington University. He and his team evaluated Jack, who exhibited the symptoms of autism spectrum disorder (ASD) and qualified for a diagnosis. He then referred the Farioles to Katie Bogan, OTD, OTR/L, who had assisted colleague Michael Gaffrey, PhD, in developing Motivation, Connection, Communication (MC2). MC2 is a high-quality, parent-mediated, early intensive behavioral intervention that addresses early indicators of ASD and related social and communicative delays.
Bogan, a pediatric occupational therapist, worked primarily as an early interventionist for Washington University Occupational Therapy’s Community Practice until 2015, when she had the opportunity to work with Gaffrey. They piloted the MC2 program with his patients from 2016-2017. She then initiated the process for the intervention to be offered through First Steps. After Gaffrey left for Duke University in 2018, Bogan continued to offer MC2 through the Infant Toddler Autism Program (ITAP) in Child Psychiatry.
Jack, now 2, qualified for ITAP. It was a game changer for the Farioles.
“The first thing Katie did was imitate Jack’s actions. He was swishing his legs on the floor back and forth, and she did the same. Then, she noticed he liked patting the table. She did it with him, then said, ‘Okay, now Mommy, you do it.’ When I sat down in front of him, his little eyes lit up. For the first time since the surgery, Jack actually saw me because I was doing something he loved,” Fariole shares.
Over the next 12 weeks, Bogan worked with Fariole both in person and virtually through ITAP to teach her the strategies and supports Jack needed to increase his social skills. Fariole, a certified reading specialist with a master’s degree in education, had to shift her thinking because this approach was focused on her, not Jack.
“Before, I was using language, narrating and labeling everything. I was talking to Jack all the time, but I wasn't imitating his actions and following his cues. This was not what typical therapy or education looked like, but it worked for Jack,” Fariole admits. “In the end, [ITAP] was very beneficial because it was what was best for me and Jack.”
In 2021, ITAP transitioned from Child Psychiatry to Washington University Occupational Therapy services. Since then, Bogan has been evaluating the program outcomes through First Steps. This process revealed that ITAP’s original program design was no longer meeting the needs of families.
“Originally, the program consisted of  coaching sessions to teach parents effective strategies to improve their child’s social and communication skills. I made two home visits each week, one hour each, for 12 weeks,” Bogan explains. “However, that schedule wasn’t feasible for parents, especially post-COVID. The program had to be continually modified to meet the needs of each family.”
Bogan has redesigned ITAP, which now stands for Infants, Toddlers and Parents. It still contains the core MC2 modules and allows for needed customization. The program schedule has been shortened to two times a week for eight weeks (instead of 12), and now includes a hybrid approach of virtual and in-person visits. Teaching visits occur virtually at times when the parent(s) can fully focus on what Bogan is teaching. In-person visits are reserved solely for practice. Additionally, all core teaching is completed within the first month. “At that point, we decide what the second month looks like, and it is customized to each family. Some may feel like they need practice in the community. The strategies may be working at home, but going to the store is a challenge, so we go to the store and practice there,” Bogan says.
This direct, one-on-one work with parents has led Bogan to think of herself as an adult therapist as opposed to a pediatric therapist.
“The child receives an ASD diagnosis, but the parents may not know what it is or what to expect. Oftentimes, no one has sat down with them and talked about autism. They can feel overwhelmed, burnt out and unable to take on anything else. They spend so much time taking care of others that they neglect their own health and well-being,” Bogan says. “And we talk through that to identify strategies to help them better manage the situation. That’s the beautiful thing about occupational therapy; all of this falls under the scope of care we offer.”
Above all, Bogan’s goal with ITAP is for parents to know what is possible. “Through intervention, there are so many amazing things that are possible,” she says. She notes that the service she provides through ITAP is not a substitute for other interventions or therapies, but a complement to therapies to enhance the everyday interactions and learning opportunities between parent and child. That was the successful outcome of her work with the Farioles.
“Because Jack was able to develop social engagement skills, it opened the door for him to participate in the other therapies he couldn’t before,” Fariole says. “Jack is now 6, in kindergarten and thriving. He continues to make improvements in his social skills. Katie’s mission to teach families these strategies has a ripple effect. ITAP impacted not only Jack, but our whole family and even my career. It truly changed everything.”
Fariole is the owner of Uniquely Wired Consultants, an educational consulting and tutoring firm seeking to provide families in Rolla, Mo., and the surrounding community with reading support services to help every child succeed academically. She is also a First Steps instructor and Early Intervention Examiner who works to promote early language development in children ages 0-3. Additionally, she specializes in assisting families of children with early symptoms of autism and children with refractory epilepsy.
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