Jace Managing Autism, ADHD, Alopecia, and Entomophobia

“You can’t overlook how amazing the CSH staff is, from the doctors, to therapists, nurses, social workers, security officers, patient experience – the list goes on. They do everything to help your child succeed. It truly takes a village and I’m forever grateful that my kids had them during this time.”

At just eight months old, Jace was being monitored for Autism Spectrum Disorder (ASD). He wasn’t meeting milestones and faced challenges with mobility and emotional regulation. His mom, Michelle, was informed that it’s more common in boys, and that there’s a likelihood of one sibling having it when the other already does. Jace’s older brother, Josiah has ASD, so Michelle wasn’t surprised when Jace was also diagnosed at 16 months old.

To help improve his mobility, Jace began physical and massage therapy at home in New York. He also began early childhood learning to improve his development before starting kindergarten. Unexpectedly, Jace started to lose his hair, and doctors diagnosed him with Alopecia Universalis. Jace’s parents were distraught and attributed this new diagnosis to stress.

Jace wasn’t able to be exposed to the sun or participate in regular outdoor activities like other kids. He and his brother were also diagnosed with entomophobia, which is extreme anxiety or fear when seeing or thinking about insects. Fears and phobias are more common in children with ASD. This made going outside in the warmer months near impossible At six years old, Jace and his family moved from New York to New Jersey, and his alopecia worsened.

Exploring Children’s Specialized Hospital Services

JaceJace’s parents began seeking pediatric services in New Jersey to help Jace reach his full potential. A mentor in Michelle’s local child advocacy group recommended she reach out to Children’s Specialized Hospital (CSH) outpatient facility in Hamilton. Knowing her son needed a primary care physician and developmental services, Michelle wanted an outpatient facility with everything under one roof. They also happened to live nearby, and it worked for both of her children. Jace began receiving Special Needs Primary Care and Developmental Behavioral Pediatric services at seven years old at the onset of COVID-19.

At CSH, the doctors started to dig a little deeper and provided additional diagnoses to Jace of Attention-deficit/hyperactivity disorder (ADHD), Disruptive Mood Dysregulation Disorder (DMDD), Oppositional Defiant Disorder (ODD), and Pica, which is when a person repeatedly eats non-food items. All of these diagnoses tied in with the initial challenges Jace faced with ASD. Michelle was grateful to have answers, but still faced challenges with medication management and helping Jace stay regulated.

Managing Jace’s Medications

Given Jace’s numerous diagnoses over the years, he was prescribed multiple medications to help him, however, Michelle found it overwhelming. Michelle reflects that the most impactful part of treatment at CSH was the management of his medication. The CSH team worked closely with Jace’s parents to make sure the appropriate amount of medication was taken at the right times of day to stabilize Jace. Michelle was prepared for Jace to be on medication for life, but wanted him weaned off a particular medicine because he no longer needed it. It also resulted in appetite suppression and insomnia. With the team’s guidance, he was able to be weaned off to a manageable amount, gaining 14 pounds within two months and sleeping on his own with no support.

“It has been an honor to be part of the care team for Jace. His family serves as excellent advocates for him and I’m lucky to be part of a larger care team including specialists, nurses, and care coordinators who have helped the family during their time at CSH,” said Christina Ott, MD, Section Chief of Special Needs Primary Care at Children’s Specialized Hospital.

JaceMichelle shares that she mentors two mothers who are scared to put their kids on medication noting that she has helped them to understand that their children may not need to be on medications for the rest of their lives.

She also shared her appreciation for the support and guidance she’s received from CSH, stating, “You can’t overlook how amazing the CSH staff is, from the doctors, to therapists, nurses, social workers, security officers, patient experience – the list goes on. They do everything to help your child succeed. It truly takes a village and I’m forever grateful that my kids had them during this time.”

How CSH Went Above and Beyond

Jace enjoyed and succeeded with remote learning during the COVID-19 pandemic and it wasn’t until it was time to go back to in-person learning that he faced challenges. To help Jace receive an education in an environment that worked best for his needs, his Developmental Pediatrician at CSH, Dr. Heather Souders, helped him maintain home instruction without interruption by diligently renewing his paperwork every 60 days.

“CSH helped us so much,” Michelle remarks. “My son has shown his best self and has been able to learn through tactile methods. He’s now reaching his milestones and has low levels of anxiety.”

After two years of remote learning, his parents transitioned Jace to homeschooling. His stress levels reduced significantly and Jace’s hair began to grow back, which is something doctors told them would never happen.

“Living His Best Life”

After six years at CSH, Jace is now 12 years old and thriving.

“He is fantastic. He is living his best life right now,” Michelle explains. “Jace loves to sing alongside his brother Josiah who plays the guitar with their professional setup. He is also really intelligent and knows English and Spanish, and is currently learning Japanese. He enjoys practicing coding but he’s really an artist. His special talent is drawing, specializing in anime and cartoons. Jace and Josiah also have a YouTube channel where we highlight the boys’ work.”

“He has made incredible progress in the years that he has been in our practice. It has been amazing to see all of the talents he has fostered with the supportive environment he has been in,” Dr. Ott remarks.

“I’m looking forward to what Jace can achieve in the future. I am so forever grateful to the Special Needs Primary Care and Developmental Behavioral Pediatric doctors including Dr. Ott and Dr. Souders,” highlighted Michelle.

Dr. Souders added, “His growth and transformation over the time I have known him has been truly amazing, and it has been such a privilege to get to know and support Jace and his family.”

Michelle’s greatest hope for her son Jace is to see him overcome his entomophobia and be able to do outdoor activities. “I want him to have the chance to enjoy the beach, amusement parks – even simple pleasures like sitting under an umbrella at an outdoor restaurant. I would love to see that Jace is free from anything that troubles him.”

Staying in Control

Jace’s parents offer advice for other parents working through health challenges with their children. They emphasize taking full advantage of all the resources that Children’s Specialized Hospital has to offer, from social workers to family faculty team members, or even patient experience team members. They also encourage parents to ask for guidance.

For struggling parents, “A little bit of support for your kids can make a difference. Give them peace and the ability to focus so they can do better. Take care of their mental health when they’re young and you’re in control.”

Learn more about our Autism Center of Excellence at Children's Specialized Hospital.

Learn more about our Special Needs Primary Care and Developmental Behavioral Pediatrics at Children's Specialized Hospital.