Boy Overcomes Disability, Aims for Eagle Scout
By Joe Mahoney
Staff Writer (http://thedailystar.com)
COOPERSTOWN -- Noah Trong has never been one to shirk away from tall challenges.
Born deaf, the 15-year-old from the Otsego County town of Exeter has developed an ambitious Eagle Scout project aimed at raising public awareness regarding people with diabilities.
"People are not handicapped," he said. "They are handi-capable."
When his parents, Chris and Lynne Trong, took their first-born child home from Bassett Medical Center, they did not know their baby, Noah, was unable to hear.
Over the months that followed, they began to wonder why Noah appeared to panic when they placed him in his crib or when they put him in the car.
"It was if we weren't there," Lynne Trong said.
What the parents could not have realized at that time was that their soothing and reassuring words to their baby were not being heard.
At about the time Noah was turning a year old, the Trongs asked that Noah's hearing be checked.
It was then that they learned he was born profoundly deaf. When he was 3 months old, he was enrolled in the Rome School for the Deaf.
There, Noah learned sign language. As a youngster, he also figured out, on his own, how to read lips by watching lip movements of people who were signing with their hands. His communication skills were improving. But while he was equpped with a hearing aid, much of what people said to him still wasn't registering.
When Noah was about to enter first grade, his parents said they struggled with the decision over whether to keep him at a school for the deaf or enroll him in the Edmeston Central School District.
"He wanted to be mainstreamed, " Lynn Trong said. "It was hard for us as parents because we knew he was safe at the Rome School for the Deaf. But he really wanted to do this. So we let a 7-year-old make his own decision. He made the right choice."
Three years ago, when he was 12, Noah became the first child patient of Dr. Elizabeth Redd, a member of the Otolaryngology Department at the Bassett Medical Center, to receive a cochlear implant.
As a result of the surgery, his ability to hear improved dramatically.
"I opened a window and for the first time I could hear birds chirping, " he recalled.
His father recalled that he and Noah went into the woods that year to go turkey hunting. "I remember Noah saying, 'Dad, is that what a gobble sounds like?'"
A member of Boy Scout Troop 47 of Springfield since he was in kindergarten, Noah has long had his sights set on receiving the coveted status of an Eagle Scout -- the highest attainable rank in the Boy Scouts of America.
This year he suggested developing a disability awareness presentation, and enlisted Redd and the Otolryngology Department at Bassett to sponsor the program.
The forum was held at 5:30 p.m. June 28 at Bassett's Clark Auditorium. Noah said he will offer a PowerPoint presentation. There were remarks from Redd and Dr. Joseph Dutkowsky, a pediatric orthopedist at Bassett and president of the American Academy for Cerebral Palsy and Developmental Medicine. In addition, there were presentations from Dr. Brenda Wait, a primary care physician at Bassett; her son, Albert Wait, a youth with cerebral palsy; Katie Crouse of Springfield, who is also living with cerebral palsy; Chelsea Nattrass, who sustained a disabling spinal cord injury as a teenager.
This summer, Noah is working as a counselor in training at Henderson Scout Camp on Crumhorn Mountain. In the time since he received his cochlear implant three years ago, a new waterproof fersion of the device has become available. Redd shad that she looks forward to equipping Noah with one this summer so he can leave it on when he is swimming or out in therain.
Lynne and Chris Trong, who are also parents to a 12-year-old daughter, Micaela, said the progress Noah has made over the years has been tremendously facilitated by Bassett's staff and the Otsego County Department of Health's early intervention program.
Noah has also given himself a boost by staying determined to reach his goals.
"When he was 7 years old," recalled Chris Trong, "Noah told us that whether they are hearing or deaf, he wanted to educate people."
As for what he hopes to accomplish, Noah said he wanted to give families such as his own assurances that there are available services that can assist them. "If this helps just one person --whatever the situation they are in," he said, "it will be worth doing."
At birth Jaden had a hearing test like all newborns in our state and he failed; two weeks later he had a repeat test and he passed (or so we were told). The next several months went by without incident but at about 9 months, I felt he was not developing the way he should. Jaden was making milestones but later than most kids do.
At Jaden's one year check-up I again brought up my concerns with his pediatrician. it was shortly after this that Jaden began Early Intervention services. Jaden began basic skills, physical and speech therapy. Closer to 2 years of age Jaden also began occupational therpay. Jaden's days became filled with what I call "structured play"; every day of the week sometimes more than once a day, Jaden had one therapy or another.
It was by accepting the fact Jaden was not quite where he should be and by being willing to allow professionals into our home that we were able to start getting Jaden caught up. He went from a boy not walking to one who could take steps and eventually run.
With the help of his therapists Jadan was making progress in most areas but his speech had not shown significant improvement. Between 1 and 2 years of age, Jaden had 3 hearing tests all of which came back inconclusive. It was just after his 2nd birthday when Jaden had an ABR and that is when we found out about his hearing loss. Jaden has a severe to profound hearing loss in his right ear and a moderate hearing loss in his left ear. He was fitted for hearing aids the same day he was diagnosed. That day I was not upset; rather I felt relieved and almost vindicated. I knew there was an issue and now I had the answer; we could begin to help Jaden in ways that we had not helped him before. Finding out about Jaden's hearing loss is what I call the first half of the puzzle that is Jaden. His hearing loss did not explain all of his quirks, like low muscle tone and feeding issues,but it did explain why he was not talking.
Within a week or two of Jaden being diagnosed we were put in touch with a teacher of the deaf for infants; she was a blessing to our family. She began working with not just Jaden but our entire family once a week and what a difference it made! Jaden started picking up signs right and left; especially signs for his favorite things like milk and cookies. Now that Jaden had hearing aids, with the help of his speech therapist, his speech began to improve too. Okay, so he was not talking yet but he was babbling which is something he had not done before.
In January of 2010 Jaden started at Little Listeners Pre-K class at the NYS School for the Deaf in Rome; since then there has been no looking back. Sending our not yet 3 year old son on a bus to a school about 30 minutes away to attend a full day of school was an adjustment for the entire family but it has been one of the best choices we have ever made for him. Jaden was in a small Pre-K class with a wonderful teacher and teacher's aide. At school Jaden also continued to get speech therapy from an amazing therapist every day of the week along with getting occupational and physical therapy both several times a week from great therapists.
It is with the help, knowledge and daily communication that our family had with his team that blessed us with a whole new little boy. During his pre-k years with the help of his teacher and speech therapist Jaden went from a boy whose number of words could be counted on one hand to one who talks and talks and talks. I never thought it was possible but there are days I crave silence; what a wonderful 'problem' to have!
When Jaden was almost 4 years old, he was diagnosed with a genetic condition called 22Q Deletion Syndrome; this is the 2nd half of the puzzle that is Jaden. We are fortunate in that Jaden does not have many of the health issues that others with this condition do. Though this was not something I considered to be good news, I still feel that this is something we are fortunate to know for it explains many of Jaden's quirks; such as feeding issues which he no longer has and weak muscle tone and fine motor skills which we now know he will likely always have.
Today Jaden still has what I call "Jaden quirks" but he has come such a long way in the past few years. Jaden still attends school at the NYS School for the Deaf; he is in their k/1 class and doing very well. His current teacher has pointed out that he is doing great with reading and so, though he is in kindergarten, he is doing spelling and reading with the first graders. Jaden's speech is still not 100% perfect but for the most part, if you know the topic, you can understand what he says. Jaden continues to get speech, occupational and physical therapy services with same therapists he began working with three years ago.n
Jaden just celebrated his 6th birthday. Over the past several years he has really blossomed into a funny, smart and witty little boy all thanks to the knowledge that we have been fortunate enough to find out about him and being willing to accept the help and information that others could give us.
I think Jaden's story shows that the saying "Knowledge is Power" is so very true; accept the knowledge that others can give you about your child, embrace it and use it to help your child. For our family, it is the knowledge that we have been given about Jaden, both good and not so good, that has allowed us to help him become the wonderful little boy he is today.
The Hearing Impaired Firefighter
by Lori Washburn
If you ask any firefighter what is one of the biggest obstacles in the fire service, they will say it is communication. Picture yourself at a fire call, sirens blaring, lights flashing, loud engines running and people blaring out instructions. Most people of normal hearing are able to block out some of the sounds and narrow their attention to the one or more on which they need to concentrate.
Now imagine your are unable to block out any of the sounds and the roar of everything comes pouring into your brain. That's what it's like for firefighters who are hearing impaired, unable to tune anything out. "It's like having a speaker in your head," said Jimbo Bonesteel. "it's hard for a person of normal hearing to hear on the fireground, but there'as an even larger challenge in the fire service for those with hearing impairments," said David Meservey. Both Bonesteel and Meservey are hearing impaired firefighters in New York State.
Jimbo Bonesteel, is a Lieutenant at West Sand Lakke Fire Department, and recently held a seminar at his department to explain to his fellow firefighters how he and they can communicate better at a fire scene. Bonesteel lost his hearing at birth. He was fitted with hearing aids until he succumbed to nerve deafness in 2011 and the complete loss of hearing in his right ear. Five years ago, Bonesteel was fitten with a cochlear implant which aids him in hearing. He has been in the fire services for 29 years both in Nebraska and New Yoirk and continues his education hope of becoming a fire instructor.
"Everyday is a challenge for someone who is hearing impaired," said Meserey, who had been in the fire service for 26 years and an EMT for 12 years. He is presently a firefighter with the Verdoy Fire Department. Meservey's hearing loss became noticeable at age nine. He was given hearing aids and began taking speech thereapy. He received his first implant in 1997 and his second in 2007. From that point, he has spent endless hours training with the members of his department to show them exactly what he can do and what his limitations are. In 2004 he became an interior firefighter and was elected lieutenant in 2009; he presently holds the office of President.
"Communication is important in the fire service, not just for people like me but for everyone," said Bonesteel. "Call me Jimbo, not Jim or Jimmy, because I can't differentiate between those names, and I could be hearing Kim or Tim or Timmy. I'n not ignoring you or mad at you when I don't turn around. "It"s because I can't hear you", he said. "We all use hand signals every day without even realizing it," explained Bonesteel to the members of his department. He asked members what hand signals they would use to express certain words or phrases. "That's exactly how you would communicate your needs to me." Simple hand gesture that we use daily to communicate - pointing to you wrist for the time, motioning to your mouth for something to drink - all are hand gestures which can be used universally between those of normal and impaired hearing.
West Sand Lake's members were appreciative of the opportunity to better understand how they can communicate with Bonesteel while on a fire call. Learning and using some of the hand signals would greatly open up their abitlity to work on a fire scene with him.
Both Bonesteel and Meservey also have the skill of lipreading. "Just be careful what you say," joked Bonesteel, "I may not be within hearing distance but I can read what you are saying."
Members of Meservey's department know how and what they need to do to communicate with him while on a fire scene. "I know to stay with physical contact with him and if I need to communicate with him, I tap him on the shoulder and turn him around so he can see me directly," said one member.
When asked what message he would lie to impart to other firefightess and the fire service, Bonsteel answered, "Don't judge me just beacuase I can't hears and assume I can't do the job. We are one family, one department, on brother/sisterhood, we are here to help each other out. Meservey said, "We are all here to do the same job, to protect life and
Firefighters with hearing loss for the Verdoy NY and West Sand Lake NY fire departments.
Maya's doll, Mary, gets hearing aids, too!
An American Girl and Her Trip to Get Hearing Aids
by Maya Preston
Noah is working on his Eagle Scout and wants to help other kids. "If this helps just one person," he said, "it will be worth it."
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Our Family Stories!
Hello, my name is Kimberly Bunal. I would llike to tell you my family story. It began when I had our first daughter, Paige, in February 2007. She was perfect in every way and I never gave a thought to hearing loss.
In 2009, I had our second daughter, Abigail. She failed her newborn hearing screening, and after further testing, she was diagnosed with a profound bilateral hearing loss. Abigail was fitted for hearing aids but showed no responses whatsoever.
At that point we started learning sign language and began researching cochlear implants, with the help of the Teacher of the Deaf from the Rome School for the Deaf Infant Program.. Then came our nightmare ... on February 14, 2011 Abilgail passed away due to a cardiac arrhythmia. Our lives were forever changed. Our little girl is never going to hear us tell her we loved her, although she did know it.
A few months after Abby's untimely passing, we found out we were having another child ... a boy. We had gone for genetic counseling to explore the possibilities of more deafness in the family. On January 10, 2012 Liam was born. He too failed his newborn hearing screening, and after further testing, he too was diagnosed with a profound hearing loss. A little piece of Abigail would live on through Liam.
Right away we contacted the Infant Program again. Having Liam was scary because we were afraid he would pass away like his sister. At one month, Liam got his hearing aids and we started using our sign language. A few months later, we found out we were having another baby boy (very unexpected). Though we were concerned about hearing loss, bigger problems were emerging. Our new baby son, Zachariah, was diagnosed through a sonogram with Hypoplastic Right Heart Syndrome. Then we thought deafnes did not seem like such a big hurdle.
On March 19, 2013 Zachariah was born. While Zach was having several surgeries lined up, we were planning for Liam to get a cochlear implant. Although Liam's surgeon could not locate his auditory nerve, there was a tiny blip from his right ear. We then decided to go ahead with the implant surgery, but only in that right ear. When Zach completed his second heart surgery, Liam had his implant surgery.
Both Zach and Liam came through just fine, and for Liam we go every 2 weeks to get the volume turned up. Already Liam is more vocal, and sign language is helping him to express himself until his listening and talking are established. It feels as though Abby prepared me for Liam's life with deafness. Although I feel her life was cut way too short, she has pushed me to be a better mother and person. I am proud of everything that has come from my children. Abigail lives in our hearts. Paige is a wondeful big sister. Zach is thriving, and Liam is active and loving. He is getting accustomed to his implant. Some people ask me: "Why did you have Liam implanted?" My reply is: "He is standing out in his own way".
If I could give some words of encouragement to other families, it would be: "THERE IS LIGHT IN EVEN THE DARKEST PLACES ... YOU JUST HAVE TO BE BRAVE AND FIND IT." I tell my kids a quote from Dr. Suess: "WHY FIT IN WHEN YOU WERE BORN TO STAND OUT!"
Thank you letting me tell you the Bunal family story. It has been a long one but we hope the story continues
for many more years!
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