Driven by Love: Mothers on a Mission Ensure the Neurodiverse Are Counted Among Christ’s Flock
Advocates for special children champion inclusion and accommodation.
“It was really just two moms working from our kitchen table. God put that in place.” — Jane Indergaard, ADHD advocate, educator and mother on co-founding an ADHD support group
Researching Thomas Edison’s life for his recent children’s book, Catholic author and EWTN host Raymond Arroyo discovered the American inventor likely had Attention-Deficit/Hyperactivity Disorder, or ADHD.
“He had trouble with memorization and sitting in class for long periods,” Arroyo shared in an interview, and was told by his schoolmaster at age 8 that he was not smart enough to be taught.
So his mother, an educator who saw her son’s intellectual genius, began teaching him at home. “Nancy understood the brilliance of her son, the curiosity innately there, and she fed it — fed his passions,” Arroyo said.
Significant inventions followed, including the first marketable lightbulb, phonograph and alkaline storage battery. But none of it would have happened without Nancy Edison, a mother on a mission to help her son thrive, despite societal constraints.
“God bless that mother … who recognized it early, fed his curiosity, and gave him science manuals alongside novels,” Arroyo said, noting that Edison also lost his hearing at age 12. “Two things the world considers liabilities — ADHD and deafness — were the blessings and the beginning of the world’s greatest inventor.”
Other mothers today are also working fastidiously to help their neurodiverse children live out their God-given potential in society and their faith communities. (The scope of this article will be mostly confined to ADHD.)
Mothers Become Advocates
When Jane Indergaard’s son received an ADHD diagnosis around age 8, the registered nurse from Fargo, North Dakota, began researching how she and her husband, a medical doctor, could help their child.
“His behaviors at home didn’t fit what we’d learned in textbooks,” Indergaard told the Register. “We came to realize we didn’t know enough about the disorder.”
This led to several decades of studying, teaching and supporting those with ADHD and other neurodiverse conditions, with an emphasis on psycho-education — evidence-based therapeutic intervention providing information and support — and co-morbidities. “ADHD rarely occurs alone,” she said.
In 2009, the Catholic mother co-founded a satellite group of Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) with a teacher friend, Stephanie Kautzman, and is now on the national board.
“These mothers [with neurodiverse children] are better than the FBI when it comes to our kids’ challenges,” Indergaard said, repeating a favorite phrase of Kautzman: “When you know better, you do better.”
The women, each contributing different gifts, were soon attracting national speakers, giving parent-to-parent educational sessions, and providing training for local schools. “There was such a huge hunger for it, and it became a labor of love,” Indergaard said. “But it was really just two moms working from our kitchen table. God put that in place.”
And because both were mothers of children with ADHD, and diagnosed with it themselves after their children, she added, “There were a lot of rare and precious insights.”
Both were eager to reverse the myths of ADHD, including that it is caused by bad parenting, too much sugar or too many video games, shedding light instead on it being a well-studied brain-based biological disorder.
Toll on the Soul
Indergaard said that since ADHD is the most prevalent pediatric outpatient psychiatric condition, everyone, including educators and those in faith communities, will eventually confront someone living with and challenged by it.
Affecting everything from learning and sleep to depression and anxiety, ADHD also can exact a spiritual toll. Just as in the autism community, where a high incidence of agnosticism and atheism exists, Indergaard wonders, “Is it because their brains process information differently? Certainly, there’s a component of that, but a lot of it is that they just don’t feel part of their faith community.”
This runs contradictory to Christ’s modeling of welcoming all, she said — a goal that, when reached, “always enriches the community.”
“As far as marginalized groups go, we’re doing better with inclusion in many areas,” both in society and churches, Indergaard said, “but those challenged with behavioral health and neurodiversity still often suffer from misunderstanding and exclusion.”
Inclusion simply means wanting to understand and putting in place what’s needed for everyone to feel part of a community, she explained. “Together, we all make up this beautiful Body of Christ. If we don’t let the hand be part of the body, we’re missing out.”
Neurodiverse people often experience greater life stressors than even those with chronic conditions, she said. “I think that’s because they’re more hidden, with symptoms being more behavioral than physical.”
‘I Had to Forgive Myself’
Ramona Treviño, of Trenton, Texas, can trace back all the ways ADHD has wreaked havoc in her life, though she wasn’t diagnosed until her 30s.
“All of the symptoms and behaviors — things I’d struggled with my whole life — I was exhibiting all of them. I thought, ‘Wow, this is me!’”
Unsurprisingly, she’s now seeing signs of it in some of her children. Studies show that there’s likely a genetic component and that a child with ADHD is four times as likely to have had a relative also diagnosed. According to Indergaard, “ADHD is as inheritable as height.”
Treviño said the diagnosis was both a relief and frightening since she had already been battling depression and anxiety. “It felt like, ‘Now another label — another thing that’s wrong with me.’”
As a child, she was impulsive, blurting out whatever thoughts came to mind, and unable to sit still, she recalled, often getting in trouble for both and unable to control either.
While Treviño excelled in academics, toward the end of high school, she got pregnant and dropped out, eventually working at a Planned Parenthood facility — a decision she has come to deeply regret. She has now had a conversion and works in pro-life ministry.
“As an adult, being able to go back and forgive myself was very important,” she said. “It’s been a lifelong process of understanding this is just how I am, and I can’t blame myself for it,” along with forgiving her loved ones who had misunderstood her.
Positive and Negative Connotations
Dr. Bryon Herbel, a Catholic psychiatrist, said the term “neurodiversity,” like a lot of concepts, can have both positive and negative connotations. “It’s wrong to force left-handed people to write with their right hands,” and vice versa, he said, noting that not everyone has the same brain organization.
“We have to recognize that there are differences in nature, and you don’t try to force people onto a narrow path,” he continued. “People come to the table with brains wired differently” but can still make positive contributions, even if in a nontraditional way.
At the same time, using the term to say we’re all the same and “you have to accommodate me” can become a “relativistic slide.”
“Anytime you use the word ‘diversity,’ you have to be careful,” he said, noting that activists can “hijack” the term for their benefit.
With ADHD in particular, he said, it’s imperative to sort through whether the disruptive child wants to do better but can’t, or if he could do better but doesn’t want to. “It’s a question of whether it’s volitional,” he said. “And it takes a lot of wisdom from people of authority to sort through that.”
Herbel’s recommendation to those wondering about ADHD within their families is to seek out an accurate diagnosis and then enroll in the best possible treatment.
While adverse family situations can contribute to a lack of focus and other issues that mimic signs of ADHD, he said, that’s not always the case. “I’ve seen kids whose lives were impoverished until they received proper treatment,” Herbel said. “For them, medication was a lifesaver — a pathway to more normalcy.”
Having an evaluation by a team of people who have experience and know what they’re dealing with is key, he said, and true ADHD can be helped with stimulants. “The beauty of stimulants is they have a short on-and-off switch. In a few hours, you’ll know if it works or not.”
Until it directly touched her, Jeremy Didier of Overland Park, Kansas, questioned whether ADHD was even real. “For a long time, I didn’t believe it was a thing — until I had a kid who was diagnosed.”
Four of her five children would be diagnosed with neurodiverse conditions, including ADHD, autism, dyslexia and dysgraphia.
After being diagnosed herself, Didier’s heart was moved to help others. She started a parent-support group for ADHD and switched careers from pharmaceutical sales to mental-health therapy.
Though the Didiers tried keeping their children in Catholic schools, not all made it through. When one son was in first grade and could hardly read, despite high test scores, they transferred him to a nearby public school.
“Their hearts were in the right place,” she said of the parochial-school teachers, but they lacked resources and training. “By the end of second grade, he could read at a high-school level,” and he is now a college student living independently.
Despite great strides within faith communities to be more responsive to the needs of the neurodiverse, she said, a void remains. Invitations for her to speak to secular parent-support organizations are common, but she seldom hears from parish groups like the Knights of Columbus.
And a lack of understanding of how these brain disorders manifest can lead to a wiggly child “looking like they’re just a bad kid or that someone hasn’t been parenting them properly.”
One of her aims is to instill a more positive focus within these neurodiverse individuals and their supporting communities, such as pointing to how many with ADHD become successful entrepreneurs. “We need to harness that creativity more and utilize it.”
Like the other mothers, Didier said that the cross of parenting a child whose brain is atypical brings suffering, but it can also incite a desire to help. “If there’s anything we can do to ease that pain for another family, we will.”
Indergaard has seen what can happen when people come together around these individuals. In the early 2000s, she said, she attended a conference in Florida through her diocese, where she was introduced to the Dreams Are Free Institute, a Catholic-based initiative to “destigmatize neurodiversity.” The school operates currently under St. Mary’s Academy in Sarasota, and on its website, it notes its purpose: “Providing diverse learners the opportunity to succeed.”
Because the state had passed a law to get vouchers in the Catholic schools, Indergaard said, they were able to train teachers in “varying exceptionalities.” Those teachers brought their knowledge back to the school and trained their colleagues, who trained the parents, and they were able to successfully integrate diverse learning styles into their classrooms, with a high success rate of graduation.
Indergaard recalled, in visiting one of these classrooms, meeting a student with eyeglasses and another with a laminated list taped to his desk. The first explained that he needed his glasses to see the whiteboard, and, similarly, his friend with ADHD needed the list to help him learn. “I was really impressed with what they’d done there.”
Katie Rierson, speech and language pathologist for St. Mary Academy, said the school currently has an enrollment of 71 students, all of whom require some sort of diverse-learning instruction. “All our teachers are special-ed certified and use curriculum to help children who need differentiated instruction,” she said, including those with autism and ADHD.
They share a campus with St. Martha School, a mainstream school, with the aim of integrating as many students as possible into St. Martha’s once they’re ready. Their students, according to their website, are average to above-average in intelligence but have various learning disabilities or other exceptionalities. On-site occupational and speech therapies are provided, with class sizes limited to 13 students.
Rierson said the school is trying to grow its program as much as possible and to get the word out to others, noting that many Catholic schools serve as prep schools for college and don’t always accommodate students who struggle with learning issues. “If we can put those supports in place, I think, as Catholics, it’s our obligation to do that.”
While the concept has been spreading in their area, she said, outreach efforts that had been taking place in the mid- to late-2000s have waned in recent years. “We were getting contacted from people all over the United States, trading information” on how to better address the needs of the neurodiverse and those with other learning issues. “I hope we can get that rolling again.”
Along with her work within an educational setting, Indergaard seeks to be a bridge between neurodiversity and faith communities. Recently, she and a CHADD colleague were tapped by a Protestant church in their area to provide training and lead a support group.
“We can’t have targeted interventions for everyone in the room,” Indergaard acknowledged, but for those willing to try, the resources are there. “It’s a tall call to have to rethink our priorities and what’s really important,” she added, but worth it.
“The common denominator of these conditions is compassion,” Indergaard said, “understanding that people with mental-health conditions can’t just will themselves out of that and ought to be treated with the same regard and respect as we do those with physical conditions.”
People just need to feel like they belong, no matter their differences, she said, adding, “There’s help, and there’s hope, and I’m feeling it more and more.”
Treviño has discovered that hope, especially at Mass. “I feel safe there,” she said, “and I feel like it’s the only thing that allows me to just be at peace.” She added, “Now don’t get me wrong. My mind can wander, and I have to bring it back. But of all the places on earth, that’s the one place where I can be still.”
- In 1998, Australian psychologist Judy Singer combined the words “neurology” and “diversity,” intending to use it for people with autism, to emphasize that those with autism have brains that process differently but are not pathological. Many in the ADHD community recently began using this term to describe themselves and other behavioral disorders, like Tourette syndrome, and learning disabilities such as dyspraxia and dyslexia, all neurological conditions in which the brain works and processes information in an atypical way.
- ADHD impacts attention and executive function related to organizing, prioritizing, planning, focusing and remembering instructions.
- ADHD is overall one of the most common disorders, with a worldwide prevalence of 5.2% among children and adolescents (Polanczak et at. 2007). Current figures estimate that 6.1 children in the United States are diagnosed with ADHD, or approximately 9.4% of children, making ADHD one of the most commonly diagnosed developmental disorders in the country.
- While there is a high variability in its severity, features manifested, and associated coexisting conditions, ADHD can affect all aspects of an individual’s life, especially if untreated or unmanaged. According to Russell Barkley, Ph.D., an internationally recognized authority on ADHD, in childhood, it can affect educational achievement, relationships, sleep, health and most importantly self-esteem. In adulthood, it can cause disruptions to both personal and professional life.
- Barkley also notes that households with ADHD experience higher rates of daily disruption, impaired relationships, marital discord, and reduced overall quality of life. Not every family or individual will experience any or all of these reported issues. But all members in a family of a child with ADHD can be affected in profound ways.
- The good news is that there is no other outpatient condition where one’s life can be turned around and changed so dramatically if properly diagnosed and treated (Ned Hallowell, 2005). Dr. Ned Hallowell also notes that there is power in community and connection. Having support, inclusion and understanding go a long way in helping folks with ADHD and their families navigate life challenges successfully.