Say Hello to Noah
"We think the way the Institute is organized and structured is the best environment for him and that the skills he is lacking will continue to be fine-tuned so that he will be prepared for his next step. The Institute has helped him shine and be independent. --Jill McBryar, Noah's mom
Four-year-old Noah McBryar loves baseball. He loves watching and playing the game. He loves it for all those iconic reasons that young boys everywhere love it. Baseball means spending time at the ballpark with his dad and a fun-filled summer evening hitting the ball in the family’s backyard. It means cheering for his older cousin at the neighborhood Little League field on a Saturday afternoon.And for Noah McBryar, it means much more.
Noah has sensory integration dysfunction, making experiences, like the noisy good time of a Chattanooga Lookouts game, difficult for him to process. With the help of loving parents, a close-knit extended family and a team of support staff at Siskin Children’s Institute, he’s making major league strides toward overcoming his challenges.
Noah’s parents, Andyand Jill McBryar, met just as Jill started college at the University of Tennessee at Chattanooga. They married soon after she graduated and knew they wanted to start a family. A born planner and organizer, Jill wanted to secure a teaching position and complete her master’s degree before their first child arrived. She also hoped to time the birth during her summer break. “At our wedding, someone asked my dad when we were going to have kids,? Jill says. “I still chuckle at his answer. He told the wedding guest, ‘I don’t know. Have Jill check her calendar.’
Andy and Jill’s plan rolled out flawlessly. She got her first teaching job at Lookout Valley Middle-High School in the fall of 2001 and completed her degree in 2005. By late 2006, Jill was pregnant. Their baby was due in early July, and Noah arrived just shy of Independence Day.
As an infant, Noah was meeting his developmental milestones. He walked a little later than most children, but his pediatrician told Jill and Andy not to be concerned. When Noah started having major issues with feeding, though, Jill knew it was time to get help. “This was our first child, and we were trying not to be paranoid, she said. “Other parents and pediatric professionals told us that a baby sometimes has to try something 100 times before they make it a regular part of their diet. But we had tried 200 times. We knew something wasn’t right. Jill says that Noah’s feeding issues were so pronounced, he sometimes vomited watching someone else eat a food that was of a color, texture, taste or smell that bothered him.
Noah was 14 months old and still bottle feeding when he had his first swallowing test. “Those results led us to a sensory therapist and a feeding therapist. That led us to Tennessee’s Early Intervention System (TEIS), which led us to the Institute,Jill says. Since Noah enrolled at Siskin Early Learning Center-Downtown in January 2009, he has used a host of Institute services. “In addition to his educational experience in the classroom, Noah also receives physical and occupational therapy, Jill says. He began seeing Dr. Gargus, a triple board certified developmental behavioral pediatrician and medical director of the Institute’s Center for Developmental Behavioral Pediatrics, in 2009. “We visited so many specialists, Jill said. “Each doctor was telling us a piece of the puzzle, but it was hard to see the whole picture. Dr. Gargus put it all together for us.
Ultimately, Noah was diagnosed with a chromosomal malformation that is more of a description than a named disorder. Geneticists refer to it as “a single copy gain of two BAC clones from the long arm of the X chromosome at Xq28a duplication of the X chromosome. The condition is characterized by the issues the family has seen revealed as Noah has gotten older—things like his sensory integration dysfunction and feeding and swallowing challenges.
In October, the pediatric center assessed Noah’s cognitive development so Jill and Andy could make an informed decision about whether Noah would attend the Institute for another year of pre-K or move on to Kindergarten for the 2011-12 school year.“Noah’s language skills are great, and he loves books, Andy says. “He has a vocabulary that amazes me. He’s never satisfied with the simplistic term for something. I call something a boat, and he corrects me and says it’s a pirates hip. I say look at that bird. He tells me it’s a toucan.
The assessment did show that Noah needs to build additional self-help and self-advocacy skills and a few fine motor skills, so Jill and Andy decided that he will stay at the Institute one more year and start public school in the fall of 2012. His feeding issues are something his family and teachers address daily. “It’s been very influential for Noah to be surrounded by other kids in his classroom who are sitting around the table eating a variety of foods, Jill said. The family celebrated a major milestone when Noah enjoyed his first Happy Meal at McDonald’s recently.
“The unknown about genetic disorders is that you don’t know whether a child is going to progress or regress, Jill said. “We are so happy that Noah has been steadily progressing. We think the way the Institute is organized and structured is the best environment for him, and that the skills he is lacking will continue to be fine-tuned so that he will be prepared for his next step. The Institute has helped him shine and be independent.
Jill says that last week she asked Noah what he wants to be when he grows up. “He first said he wanted to be a fireman. Then he paused and said, ‘Or I’ll be the President.Yeah, that’s it. I’ll be the President.’
Noah’s friends at the Institute wouldn’t be at all surprised to see him as a baseball player rounding third base someday, or as a fireman or the President of the United States. But for now, his parents and his teachers are focused on helping him hit a home run in life by focusing on the fundamentals of his early childhood education. He has a crowd of cheerleaders who can’t wait to see what he grows up to be.
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Watch this video to hear mom Jill tell her family's story.