Say Hello to Noah
"We think theway the Institute is organized and structured is the best environment for himand that the skills he is lacking will continue to be fine-tuned so that hewill be prepared for his next step. The Institute has helped him shine and beindependent.” --Jill McBryar, Noah's mom
Four-year-old NoahMcBryar loves baseball. He loves watching and playing the game. He loves itfor all those iconic reasons that young boys everywhere love it. Baseballmeans spending time at the ballpark with his dad and a fun-filled summerevening hitting the ball in the family’s backyard. It means cheering for hisolder cousin at the neighborhood Little League field on a Saturday afternoon.And for Noah McBryar, it means much more.
Noah has sensoryintegration dysfunction, making experiences, like the noisy good time of aChattanooga Lookouts game, difficult for him to process. With the help ofloving parents, a close-knit extended family and a team of support staff atSiskin Children’s Institute, he’s making major league strides towardovercoming his challenges.
Noah’s parents, Andyand Jill McBryar, met just as Jill started college at the University ofTennessee at Chattanooga. They married soon after she graduated and knew theywanted to start a family. A born planner and organizer, Jill wanted to securea teaching position and complete her master’s degree before their first childarrived. She also hoped to time the birth during her summer break. “At ourwedding, someone asked my dad when we were going to have kids,” Jill says. “Istill chuckle at his answer. He told the wedding guest, ‘I don’t know. HaveJill check her calendar.’”
Andy and Jill’s planrolled out flawlessly. She got her first teaching job at Lookout ValleyMiddle-High School in the fall of 2001 and completed her degree in 2005. Bylate 2006, Jill was pregnant. Their baby was due in early July, and Noaharrived just shy of Independence Day.
As an infant, Noahwas meeting his developmental milestones. He walked a little later than mostchildren, but his pediatrician told Jill and Andy not to be concerned. WhenNoah started having major issues with feeding, though, Jill knew it was timeto get help. “This was our first child, and we were trying not to beparanoid,” she said. “Other parents and pediatric professionals told us thata baby sometimes has to try something 100 times before they make it a regularpart of their diet. But we had tried 200 times. We knew something wasn’tright.” Jill says that Noah’s feeding issues were so pronounced, he sometimesvomited watching someone else eat a food that was of a color, texture, tasteor smell that bothered him.
Noah was 14 monthsold and still bottle feeding when he had his first swallowing test. “Thoseresults led us to a sensory therapist and a feeding therapist. That led us toTennessee’s Early Intervention System (TEIS), which led us to the Institute,”Jill says. Since Noah enrolled at Siskin Early Learning Center-Downtown inJanuary 2009, he has used a host of Institute services. “In addition to hiseducational experience in the classroom, Noah also receives physical andoccupational therapy,” Jill says. He began seeing Dr. Gargus, a triple boardcertified developmental behavioral pediatrician and medical director of theInstitute’s Center for Developmental Behavioral Pediatrics, in 2009. “We visitedso many specialists,” Jill said. “Each doctor was telling us a piece of thepuzzle, but it was hard to see the whole picture. Dr. Gargus put it alltogether for us.”
Ultimately, Noah wasdiagnosed with a chromosomal malformation that is more of a description thana named disorder. Geneticists refer to it as “a single copy gain of two BACclones from the long arm of the X chromosome at Xq28a duplication of the Xchromosome.” The condition is characterized by the issues the family has seenrevealed as Noah has gotten older—things like his sensory integrationdysfunction and feeding and swallowing challenges.
In October, thepediatric center assessed Noah’s cognitive development so Jill and Andy couldmake an informed decision about whether Noah would attend the Institute foranother 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 avocabulary that amazes me. He’s never satisfied with the simplistic term forsomething. I call something a boat, and he corrects me and says it’s a pirateship. I say look at that bird. He tells me it’s a toucan.”
The assessment didshow that Noah needs to build additional self-help and self-advocacy skillsand a few fine motor skills, so Jill and Andy decided that he will stay atthe Institute one more year and start public school in the fall of 2012. Hisfeeding issues are something his family and teachers address daily. “It’sbeen very influential for Noah to be surrounded by other kids in hisclassroom who are sitting around the table eating a variety of foods,” Jillsaid. The family celebrated a major milestone when Noah enjoyed his firstHappy Meal at McDonald’s recently.
“The unknown aboutgenetic disorders is that you don’t know whether a child is going to progressor regress,” Jill said. “We are so happy that Noah has been steadilyprogressing. We think the way the Institute is organized and structured isthe best environment for him, and that the skills he is lacking will continueto be fine-tuned so that he will be prepared for his next step. The Institutehas helped him shine and be independent.”
Jill says that lastweek she asked Noah what he wants to be when he grows up. “He first said hewanted 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 atthe Institute wouldn’t be at all surprised to see him as a baseball playerrounding third base someday, or as a fireman or the President of the UnitedStates. But for now, his parents and his teachers are focused on helping himhit a home run in life by focusing on the fundamentals of his early childhoodeducation. He has a crowd of cheerleaders who can’t wait to see what he growsup to be.
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Watch this video tohear mom Jill tell her family's story.