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09/30/2020 08:30 AMMarybeth Ellison is worried. Yes, yes, everybody is worried these days, but her worry has a particular focus: children with special needs. Marybeth is a pediatrician in Essex specializing in children with developmental challenges.
She worries that these children are the ones most likely to suffer in the distance learning that has become the pandemic norm. For many of these children, she notes, the virtual classroom, where kids log on to instruction by computer, does not simply mean less learning. It means no learning.
“There is no malicious intent, but some kids just can’t adjust to virtual learning,” she says.
In what is increasingly called “the before times,” schools created a written individualized educational program (IEP) for each child entitled to special education. In this time of distance learning, Marybeth says, many of those IEPs have fallen by the wayside.
Students with special needs, she says, must most often be taught in person. According to Marybeth, with regular and frequent COVID testing and rapid results for those children, along with their families and teachers, complete in-person schooling would be possible.
That doesn’t mean such instruction would be easy.
“We need resources and the political and educational will,” she says. “We are a first-world nation. We do have the ability to do this. So far, we have not had the political will. That is a tragedy.”
She adds that long range, the efforts are cost effective if considered in light of the lifetime services such children, untreated, would need. And the time window for providing the needed services closes with age.
“Early intervention is important; these are the critical years. They are crucial in closing the gap; there is a critical window for these services,” she says. “And with the right treatment, while the brain is developing, there are many, many gains.”
Marybeth’s interest in treating children with special needs grew from her own daughter Lara, now in her 20s, who was diagnosed with autism as a child. Marybeth, a graduate of Wesleyan and the University of Connecticut Medical School, was already specializing in pediatrics but turned her focus to the special-needs population. In addition to her own practice, she is an associate professor at Yale Medical school teaching pediatric residents.
Her career trajectory, however, was a quite unusual one. She took five years off and lived on a sailboat with her husband Lee along with Lara and her son Alex. When they left, Lara was six and Alex eight. Some years later, Alex wrote a book about the experience, A Star to Sail Her By.
The family sailed through the Caribbean, visiting not only islands but the northern half of South American and then spent the last year cruising in the Pacific.
Marybeth home schooled—or perhaps the better phrase is “boat schooled”—the children, interspersing book lessons with visits to sites on the islands where they stopped to learn about new places from the people who lived there.
“We met many different people and had many adventures,” she remembers.
The trip was only supposed to take a year, but it stretched into five.
“After the first year, it was such a positive experience, we kept going,” she recalls.
She has had no second thoughts about the benefits of the adventure.
“You know what they say, “On their deathbeds, nobody says ‘Gosh, I wish I had worked more,’” she observes.
Not that there weren’t glitches on the voyage. Alex got seriously ill and had to hospitalized and the family returned to Connecticut for his treatment. In the final year, running out of time, the family didn’t sail to the Pacific but had the boat shipped.
Marybeth kept in touch with medical colleagues as the family traveled, but her husband Lee, a cardiothoracic surgeon, chose a different path when the family returned. An art major in college before turning to medicine, he chose to go back to art. Now he is a sculptor whose pieces, in granite, have been at the Lyme Art Association, the Guilford Art Center, and the Mystic Seaport Gallery. Most recently his 700-pound granite sea lion was on display at the seaport gallery, and ultimately it will be on permanent display in the gardens.
Upon her return, Marybeth resumed her practice with special-needs children. When working with such patients, she always wants to begin from strength. She starts out discussions asking patients what they are good at and what they like before asking about areas that create difficulties.
She emphasizes that treatment is a triangle, involving the physician, the family, and medications, including vitamins and diet changes.
“With the right supports, much progress can be made,” she says, but she emphasizes that early intervention is vitally important in treatment.
“I am always optimistic that things can get better,” Marybeth says. “I want everybody to find their top potential and to be the best that they can be.”