Loving a “24-hour” child
By Amy Whipple & Will Halim
The school year is just beginning as Susanna and George spend a late-summer afternoon with their caseworker Shacoya Bates from Every Child, Inc. Their grandson, five-year-old Jamal, sits at the dining room table with George in fixed determination to insert a flimsy straw into the notoriously difficult opening of a Capri Sun juice pouch. As soon as George says, “No thank you, he does not want help,” the tip of the straw breaks through the foil barrier and Jamal takes a triumphant sip before dashing into the living room where his grandma and Shacoya are sitting.
George follows and asks him to please take his toys and play upstairs in his room. Jamal is learning how to follow through on instructions and George and Susanna have been learning the exactitude needed for a boy like Jamal, especially during times of transition. When you’re five, your day is full of transitions: it’s time to get out of bed, change your clothes, brush your teeth, use the bathroom, eat your breakfast, on and on and on it goes.
This school year—his last as a preschooler—has him at yet another new school. He’s already off to a rough start (he punched a peer). He’s been moved out of Head Start into a classroom that should provide better structure to Jamal’s day. The more rigid the structure, the more Jamal knows what to expect. The more Jamal knows what to expect, the better he is able to manage himself. But the change is a mixed bag: Head Start had more children who could relate to Jamal’s background. His new school has children who, as Susanna says, are more settled. Jamal rules the roost.
Jamal came to live with Susanna and George when he was just a year old. His parents were both in the prison system for drugs and Jamal needed a safe place to live amongst all the chaos. Susanna and George took in Jamal with the understanding they’d be co- parenting him with his other grandparents. They gave up retirement years of travel and decreased work in their ministries in order to raise Jamal.
As Jamal grew out of babyhood into the toddler and preschool years, he began exhibiting intense behaviors associated with oppositional defiance disorder (ODD)—throwing chairs—as well as attention deficit disorder (ADD)—inability to stay on task— and autism spectrum disorder (ASD)—meltdowns when routines change. He struggled with food intake, giving him a diagnosis of failure to thrive. He also had a deep, burgeoning intelligence, charisma, and tenacity. But as his more difficult behaviors, including physical violence, increased, supports in George and Susanna’s life—friends, members of their church, uncles/aunts, nieces/nephews—began to drop out.
And though Susanna and George derive great strength in their personal faith, all the prayer in the world isn’t quite enough. “He’s a 24-hour child,” Susanna says, but when she talks more about his acting out, she adds, “I feel bad talking against him because he’s the sweetest little kid.”
Some of the drop in support is out of fear of the boy who lashes out verbally and physically and cannot be calmed back down. Some of the drop in support—such as with Jamal’s other grandparents—comes from a lack of education and/or an unwillingness to put in the work to help keep him from falling apart: telling Jamal what is coming next, what is expected, following through in a direct approach, maintaining boundaries and structure. He needs every last bit of that help from his adults to keep the charming, loving, sensitive parts of himself upfront.
Which is where people like Shacoya come in. She is part of Susanna and George’s now-growing support network for Jamal, which includes wrap-around therapy services and preschool-aged early intervention services.
Jamal’s individualized education plan (IEP) meeting is coming up and will set the tone for his school year. It’s the primary document that will make sure he has supports in place, such as a teacher’s assistant to help redirect him, to give him the best chance for a good school year. Shacoya also wants to make sure Susanna, George, and the school consider Jamal’s incredible intelligence. “He could be acting out out of boredom,” Shacoya explains. Challenging him intellectually might be one of the major pieces for a peaceful school day.
“I’m sick of meetings,” Susanna says. Susanna has four kids and thirteen grandkids and, prior to Jamal, “can count on one hand the number of times I’ve been called to the school,” but, for Jamal, she’s been called in for everything from habitually broken crayons to smearing feces on the bathroom wall.
Shacoya validates Susanna’s wear- and wariness. Having a child with any kind of special need is an exhausting experience. But someone like Shacoya is there to hopefully help make that exhaustion a little less overwhelming. For instance, she’s come across resources to fund the Pediasure Jamal drinks before bed in order to keep on weight; like infant formula, supplemental formulas can become exorbitant in cost.
Shacoya also arrives this afternoon with an exciting find. There’s a group therapy for children with ASD. And not just any group therapy. This one features a robot—Romibo—that helps children learn things like eye contact, responsive conversation, and the like.
Any untraveled avenue is a welcome bit of information; they’ll try anything. “He’s not merchandise,” George says. You can’t just get over him or give up on him. “He’s our grandson.”
*** Some names and identifying details have been changed to comply with the family’s specific privacy requests ***
Writer: Amy Whipple
Photographer & Web Producer: Will Halim
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