Casey and Rob Foreaker’s 16-year-old son, Dalton, is medically complex, but somehow that wasn’t the complicated part.
Emergency room visits related to his brand of inflammatory bowel disease, known as Crohn’s disease, were riddled with emotional landmines for Dalton, who is also autistic.
An unfamiliar TV commercial might trigger him to punch the screen. The behavior of other children could cause him to melt down, as might the mention of Halloween.
The list of his triggers is so lengthy, and encompasses so many topics or behaviors that others wouldn’t think to avoid, the Foreakers did everything in their power to dodge in-person medical scenarios with their son, for fear that his reactions would turn destructive or violent.
That changed in October.
Dalton required a necessary procedure, a laryngeal cleft repair that would protect his airway from food particles while eating.
The Foreaker’s anxiety began to skyrocket as memories of past encounters began to play in their minds, until Dalton’s psychiatrist mentioned a new program at UPMC Children’s Hospital of Pittsburgh known as Adaptive Care.
His referral led to a phone call from the “team’s” only official employee, Alanna Kanawalsky.
“She asked me so many questions about Dalton, and got in touch with everyone who would be in contact with him,” Casey Foreaker said.
One of those people was Dalton’s scheduled anesthesiologist, who called the family ahead of time to discuss medications to calm their son on surgery day. And he offered his personal cell phone number, just in case they needed to talk through other concerns.
Kanawalsky saw the need for that sort of one-on-one attention for patients with special needs while she was a Child Life liaison in the same-day surgery department, where she strove to make hospital stays more socially and emotionally supportive for all patients and their families.
“Those patient populations — with behavioral or developmental disorders like autism spectrum disorder, Down syndrome, sensory processing disorder — require attention and detail that was not always possible when focusing on a whole unit,” she said.
For Kanawalsky, that wasn’t an aha moment. It was more of an “I knew it.”
As she worked toward her master’s degree in applied developmental psychology at the University of Pittsburgh, she dreamed up a position that would serve exactly that need as her capstone project. That was in 2008, well ahead of the few programs and scholarly articles that have emerged since.
Both the Children’s Hospital of Colorado and Cincinnati Children’s Hospital Medical Center employ similar programs.
A paper published in 2021 in the Journal of Autism and Developmental Disorders showed fewer challenges with anxiety and coping among autistic children in the outpatient environment when they were supported by adaptive care plans compared to those without them.
Another study, published in 2023 in the journal Children (Basel), used the adaptive care model from children’s hospitals as inspiration for a multi-disciplinary approach oriented toward caring for autistic adolescents with an intellectual or developmental disability in the hospital setting, which has the potential to increase accessibility to care in this population.
Kanawalsky refers to herself as “persistent,” partially for her insistence that such a program should exist, even without much precedent.
“I continued to push the idea that there should be one person, one role, to meet these children’s needs, with the idea that this team might grow: There could also be more Child Life specialists who serve our Adaptive Care patients someday,” she said.
With a grant from the Pittsburgh-based Robert S. and Louise S. Kahn Foundation, Kanawalsky got her wish beginning in January.
Word is still getting out about the services Adaptive Care offers.
For support through Adaptive Care, patients must be 3 years old or older, have a diagnosis of a developmental or behavioral disorder, and have a difficult time coping in the hospital environment.
The services are free-of-charge and not billed through insurance. And for now, they’re only available at the Lawrenceville campus, where Kanawalsky’s efforts are supported by other Child Life specialists.
Referrals can come through medical providers who anticipate same-day surgery or an inpatient stay for a patient who meets those criteria — or from a parent or caregiver — by emailing chpadaptivecare@upmc.edu.
Responses usually come within two to three days, though time is of the essence: Kanawalsky asks that prospective families reach out as soon as possible, but not less than a week prior to the patient’s appointment. That amount of time is needed for the initial informal assessment and follow-up phone calls, if necessary.
In Dalton’s case, his throat surgery was not only successful medically but “incident-free” emotionally, due to the planning made possible by Adaptive Care, his mother reported.
As a result, the Foreakers felt confident enough to finally schedule a colonoscopy for their son — a preventative care procedure, in his case, that he’d missed for three years prior because of behavioral concerns.
On colonoscopy day, the hospital staff met the Foreakers in the parking garage, allowing Dalton to bypass the busyness of the hospital’s main entrance. They used private staff elevators, further eliminating triggers.
As they arrived at Dalton’s private room, the TV intentionally remained off. His preferred stimulation, a bubble machine, was already pumping the room full of iridescent orbs. And taped to the door was a sheet of paper that read, “Please read Adaptive Care plan BEFORE entering the room.”
Not only was that a directive, it was a privacy screen for the second page that lay below: a complete list of every single one of Dalton’s preferences and triggers.
The ease that information provided led to another incident-free procedure, but will also pay dividends for the Foreaker family, whose sole focus is now Dalton’s physical health, knowing the Adaptive Care team is fully capable of meeting Dalton’s emotional needs.
“I no longer think twice about bringing him to the hospital. I won’t hesitate at all,” Casey Foreaker said. “I know we can do this. I know who to contact.
“When you have the backup of people who are prepared for this, they have everyone on board, you know there shouldn’t be any issues, that takes so much pressure off of the parents.”
Abby Mackey is a registered nurse and can be reached at amackey@post-gazette.com and IG @abbymackeywrites
First Published: December 10, 2023, 10:30 a.m.
Updated: December 11, 2023, 6:32 p.m.
