This blog post is an excerpt from the webinar “Age-Appropriate Behavior Management: Strategies to Address Difficult Behaviors in Children with Neurologic Conditions” which aired live on Feb. 10, 2021. Big thank you to our 2021 Education Series partners bluebirdbio, Greenwhich Biosciences, Origin and UCB for their support.
A Parent’s Perspective
Karin Kelley has read a sky-high pile of parenting books over the years, trying to get a handle on her twin daughters’ difficult behaviors. She is the single mother of three children – an 11-year-old boy and two identical twin girls, who are 8.
“My girls’ behavior had always been challenging and became increasingly so with age,” Kelley shared in a recent CNF webinar about age-appropriate behavior management.
“I knew in my gut that something wasn’t quite right early on.”
As babies, her daughters always needed to be held and engaged otherwise they would scream. As toddlers, they climbed and ran and hit and ate things they shouldn’t. Once, one of the girls jumped into a swimming pool without knowing how to swim. They ran away in public.
“Everything was a battle and every interaction had me on edge, I was constantly waiting for the other shoe to drop,” says Kelley, who has an M.A. in Counseling Psychology.
Over time, the girls’ behavior became more violent, disruptive and seemingly defiant.
But they were also very intelligent, verbal and appeared neurotypical.
“Nobody really would listen to me when I would say ‘I don’t know what is going on, something doesn’t seem right,’” Kelley says.
She was told her daughters were “just strong-willed” and given different suggestions of parenting advice.
“I started blaming myself – I just wasn’t a good enough parent. What in the world was I doing wrong, why couldn’t I parent them?” says Kelley. “That’s not where we want to be as parents.”
At age four, the girls were asked to leave their pre-school due to their behavior. That spurred the family’s journey towards answers.
“Finally, we had to do something – somebody had to help us,” Kelley says.
Listen to Kelley describe her family’s diagnostic journey:
A Diagnosis – And More Questions
Her daughters were diagnosed with ADHD at age five, and autism and oppositional defiant disorder at six.
At that point, the family had a diagnosis but, Kelley says, they still didn’t have any answers about how to help the girls with their behavior. She continued her fervent parenting research.
About a year later, Kelley discovered the neurobehavioral approach and started working with Eileen Devine, LCSW, a neurobehavior support coach for parents who follows a “brain-first” model.
This model, one of several different approaches to behavior management and parenting, focuses on brain function and sees behavior as a symptom of brain-based differences.
“Brain-based differences are physical disabilities with challenging behavioral symptoms,” says Devine, in the webinar about age-appropriate behavior management.
“What would we do for any other child who has a physical disability? We would provide them with accommodations.”
Learn more about the brain-first approach and how it relates to parenting:
A Different Lens
Changing the lens through which parents view their child’s behavior also changes the way they can approach it.
Devine shared an example of how this works from her own personal experience as the adoptive mother of a 12-year-old girl with fetal alcohol spectrum disorder, who has significant behavioral symptoms at times.
“The way that I describe her to others who are managing the environment that she is in – like teachers, for example – is that she’s a really good listener and she wants to do the right thing, but she has very slow verbal processing and you can only give her one step at a time,” Devine says.
“That’s very, very different than ‘She never listens, and she’ll never follow instructions.’”
The neurobehavioral approach also addresses the developmental age of the child – which is oftentimes different than their chronological age.
“The management of the behavior is to recognize the symptom and understand what cognitive skill is behind it, so you can do something about it that way,” she says.
What steps can you take right now with your child? Here is some advice from Devine:
Kelley says thinking about her twin daughters’ behavior through this lens has made a significant difference in how she parents them.
“Their behavior was not willful – kids do well when they can. That shift in how I thought about my girls was critical,” she says.
“It did not happen overnight but, once it shifted, I just began to see them differently. Then, I could start to do the work that needed to be done – mostly on me – in changing how I interacted with them.”