When you are 5 years old and it’s a Tuesday morning, what could be better than going on a field trip to a bowling alley with your class?
Jack Cleavenger has special needs but he was able to go bowling because Emily Ocheltree, a medical assistant in Akron Children’s School Health Services, was right by his side.
It takes a village and his kindergarten teacher Cherisse Kohl and educational assistant Therese York were nearby as well, helping him roll his ball and cheering on him and his fellow classmates at Akron Public Schools’ Case Community Learning Center.
“Jack is nonverbal – he uses signs – but he loves to socialize and I can tell at the end of his day that he has had fun by his mood,” said his mom, Sandi Noriega. “He is happy, and he sleeps well on nights after his field trips.”
Just before his first turn to bowl, Emily set up Jack’s enteral feeding. The average person would never realize the small backpack he was wearing was not filled with homework but rather all the equipment related to his g-tube.
Jack has born premature – with Down syndrome and a heart defect. At 2 days old, he was in congestive heart failure and spent 60 days in neonatal intensive care at Akron Children’s. His open heart surgery was followed by a 45-day stay in the pediatric intensive care unit.
But with the help of many Akron Children’s specialists, including those on the Haslinger Family Pediatric Palliative Care Center team, home nursing, Jack’s dad, David, and lots of family support, Jack is now more than halfway through his kindergarten year.
Akron Children’s School Health Services contracts with 31 school districts to staff the schools with nurses and medical assistants. Their jobs run the gamut from assessing children with tummy aches to working closely with parents who have children with chronic illnesses such as diabetes, allergies, and epilepsy. Emily provides nursing care for all students at Case, who range from kindergarten up to fifth grade.
Although Jack can eat a few items such as freeze-dried fruit or a cracker that can melt in his mouth, he gets the vast majority of his nutrition from the g-tube that connects directly to his stomach. While at school, Emily prepares his feeding discreetly thanks to the backpack system, which Sandi affectionately calls the “Jack Pack.”
“Jack’s team at Case School knows what he likes and what makes him comfortable,” said Sandi.
Jack also has a sensory processing disorder. So as his classmates sat in chairs at the bowling alley, he preferred to sit cross-legged on the floor near them – giving him a little more space to observe and process the action and noise taking place around him. But, later, he gladly joined his classmates at a table for post-bowling snack time.
Jack likes to hold a piece of paper – a CVS receipt Sandi pulled from her purse was perfect – and he waves it similar to the way some children like to flap their arms or hold fidget spinners.
“Focusing on the paper in hand allows him to not get overwhelmed by other things and allows him to come back into himself,” Sandi said.
Jack continues to receive occupational and speech therapy. The therapists are introducing him to an adaptive communication device that will allow him to push buttons to communicate sentences like, “Good morning,” “My name is Jack,” or “I am hungry.”
Jack likes school, and Sandi feels blessed he can attend his neighborhood public school on an Individualized Education Plan. As with all children, all the new experiences – from riding the school bus to class projects and taking the field trips (other outings were to a planetarium and swimming pool) – help him learn, grow and develop new skills.
“It’s reassuring to know his teacher, principal, nurses and everyone at Case watch out for Jack,” said Sandi. “Emily and I talk almost daily about issues with his feeding – making adjustments. Emily also knows how to handle a problem related to his asthma. It might just mean offering him an inhaler or it might mean calling 9-1-1 but the key is knowing how to respond. That gives a mom piece of mind.”