living with autism

cover pic 42612 copy

cover pic 42612 copyYoung adults with autism and their families meet challenges with perseverance and hope

By Connie Berry
Sun editor

   Keon and Theresa Kellogg were beside themselves with happiness when they heard from Catholic Charities that there was a baby boy ready for them to bring home. They only had a week to find a pediatrician and decorate the baby’s nursery. The couple made the decision to adopt when they were fast approaching 30 years old and they had not been able to conceive a child of their own after seven years of marriage. Little Benjamin was only 10 weeks old when he came into their lives.    

   “I can remember the exact words I heard right there on that telephone,” Theresa said, pointing to the telephone in their comfortable ranch house in Mexico. “They said, ‘You’ve got a boy.’ It was so exciting. They let us meet him two days before we brought him home so we had to hold him and then give him back.”

   The Kelloggs brought Ben — that’s what he prefers to be called these days — his first little outfit and after getting a check-up by the pediatrician, they brought him home. Ben was not a great sleeper, Theresa explained, and he was sick a lot. He said “Mama” by six months old and “Dada” soon followed. His vocabulary grew and was extensive for his age, but at 18 months old, it was all lost.

   “He used gestures and grunts and very few words,” Theresa said. By the time he was two years old, Theresa and Keon knew something was not right. Theresa said she remembers distinctly being at the mall at a food court and watching as a baby around nine months old was able to feed himself while she was still feeding Ben. Theresa has a sister who is an elementary school teacher and there were other family members who were beginning to question Ben’s development.

   Then the evaluations began. First came hearing evaluations then speech testing and comprehension evaluations. The Kelloggs were told Ben couldn’t comprehend what was going on around him. His parents didn’t agree. Theresa knew she saw light shining in his eyes and she wasn’t about to let anyone put it out.

   Keon said Theresa went to work after the autism diagnosis. She researched everything she could about the condition. In those days there weren’t extensive online resources like there are today. “I was always at the library or reading or watching something on television,” she said. For Keon, it was a little different. He had anticipated baseball games and tossing the football around with his son. Instead, Ben had piano lessons, jazz dance classes and sensory therapy, along with several other therapies over the years.

  Keon’s work takes him out of town for weeks at a time so they decided Theresa would stay at home with Ben. They made the decision to homeschool Ben after third grade. When he attended occupational therapy (OT), physical therapy (PT), speech therapy sessions and auditory integration sessions, Theresa was there so she could learn how to do everything the same way at home. It wasn’t easy, Theresa said. She had to be extremely organized and find ways to present algebra and science labs when her strong subjects were always English and social studies. She had to physically keep Ben in his chair at times during the first year when he wanted to spend the morning watching television and didn’t understand that school was happening at home. Theresa was resilient. She made him sit in the time-out chair when he would bite or throw himself on the couch in frustration. Eventually, Ben understood his mother and he began to flourish into a voracious reader, sometimes finishing a book in the car on the way home from the bookstore. Even now, his dad said he has four or five books going at a time. Keon and Theresa rely on Ben for help when they do their daily crossword puzzles together.

   Ben’s academic success is significant. After his years of homeschooling, he took the GED exam at BOCES in Onondaga County and passed with flying colors. He enrolled at Cayuga Community College and is about to graduate with a liberal arts degree, which he earned through his online courses. Ben had to participate in online discussion groups, write papers and do everything all the other students did. He wants to be a writer. Theresa found an internet site just off the ground last summer, which focuses on young adults with autism. It’s called “Autism After 16” and Ben writes a column titled “The Learning Curve” for the site. His column appears every other week and he is earning money for his work.

   Autism presented, and still presents, some major challenges for Ben and his family. They aren’t sure when Ben will be able to live in an independent setting, or if that will ever happen. Theresa still has to remind him not to go out on a snowy day wearing a t-shirt and sneakers. She reads his online correspondence over before Ben sends it because he cannot navigate the nuances of conversation. He can be abrupt and tactless in his wording. And Theresa said, “That’s not the way the world works. We may accept him as he is, but 99.9 percent of the people out there will not.”

   The Kelloggs attend St. Anne, Mother of Mary Church in Mexico. Keon and Theresa grew up in the parish, celebrating all their sacraments there. Ben has done the same. Linda Buckley is director of faith formation at the parish and she said she has enjoyed having Ben in classes over the years. Buckley said, “He is a very nice, mature young man.”

   Ben has a solid spirituality he relies on, he said.

   “Basically I feel God has had a very big presence in my life,” Ben said. “He has guided me on a path to be a writer. I wasn’t sure what I wanted to do with my life and then I focused on writing and realized I’d produced a lot of written material and people seemed to like my writing. Now I am pursuing the path as a writer. I am confident with writing because it has become natural to me because it is a gift God has given to me. He wants me to share my thoughts with the world.”

   Nearly two decades later, Ben’s words are a long way from, “Your son doesn’t comprehend what’s going on.”

Another young man defies the odds

  Christopher Coant is 30 and works at Holy Trinity Church in Fulton as a maintenance person. He’s been at it for four or fives years now and he enjoys the job. Chris has autism and his parents, Bob and Lynne, were also told he would never be able to function. He has defied the odds and not only “functions” very well, but by all accounts is a pleasure to be around.

  Heidi Buda, director of faith formation at Holy Trinity, said he’s a great guy. He went through the RCIA program and Buda was his sponsor.

   “His laughter brings joy to our office,” Buda said. “I was able to get to know Chris a lot better when he joined RCIA a couple years ago. I actually became his sponsor and it was a great honor for me. All I can say is, Chris is awesome.”

   The early days weren’t so awesome for his parents. Back in those days, the Coants were actually told by one professional they encountered that Chris’ autism was likely due to his mother’s inability to bond with him when he was a baby.

   “Nothing could be further from the truth,” Bob said. “Chris couldn’t go anyplace without his mother. They were so close. I thought then, ‘This guy’s coming from Mars.’ Of course my wife was in tears. That was the end of that meeting.”

   Chris was diagnosed with Attention Deficit Disorder (ADD) first and then later diagnosed with Pervasive Developmental Disorder (PDD), PDD being one of the disorders on the autism spectrum. He attended school at Oswego County BOCES and gave a speech at his graduation ceremony thanking his friends and the teachers he had learned so much from. His parents became parent advocates helping other parents and children with autism understand their educational rights.

   The Coants often dined at a local Fulton landmark, the Ladd’s Golden Corral. They got to know the owners and shared their desire to find Chris employment because they knew he was capable. The Ladds gave Chris a chance and he learned how to bus tables, run the dishwashing machines and became a valuable employee, eventually training others.

   “Hal Ladd used to say, ‘I wish I had three more of him,’” Bob said.

   Unfortunately the restaurant closed and that meant Chris was in need of a new job. He found a place at Holy Trinity and said he loves it there. His family has always attended the church and he and his mom go to daily Mass and his dad sings in the choir. Chris attended the Rite of Election at the Cathedral recently.

   “That was really something,” Chris said. “They had confessionals on both sides. It was beautiful.”      

   Like the Kelloggs, the Coants had to fight for their son. The systems in place have changed over the years, but parents who have  a child with autism have to navigate through waters filled with education-speak and professionals who have little experience with their children but have much to say about their futures.

   “We learned over the years to realize that these people are employed because of people like Christopher. They work for us; we do not work for them. It’s all about Christopher,” Bob said.

   Chris has a real love of the Christmas season, his parents said. He’s the one in charge of decorating and because he never wants the tree to come down, his father said the family had to change over to using an artificial tree.  

   “He wants the tree up the day after Thanksgiving,” Lynne said.

  Bob said Chris is meticulous about grooming and his room is immaculate.

   “I’m a neat freak,” Chris said with a laugh.

   Chris still lives at home and is an integral part of his church family and extended family. He loves to cook and his parents said he makes many of the meals at home. Because of his autism, Chris is regimented about his schedule and besides his job, he spends time at the YMCA each week. He loves listening to music and said his favorite type is classical because it’s soothing.

   “People were way off the mark about Chris,” Bob said. “There really isn’t much that he cannot do. He worked very hard to make his First Communion and Confirmation. He and his mom studied very hard at home for that.”

   Chris has an easy smile and manner. Kelly LeVea is the secretary at Holy Trinity and she said Chris is a lot of fun. Between the pastor, Father Stephen Wirkes, and Chris, the parish office is full of life. “He could proofread my bulletins,” she said. “Chris always knows what’s going on and what’s in them.”

   For now, Chris is happy to have the job at his parish and his co-workers are glad he’s there.

   “Father Wirkes is great,” Chris said. “He likes to have me here.”

Autism defined

   Autism spectrum disorders (ASD) are characterized by social interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors. However, symptoms and their severity vary widely across these three core areas. Taken together, they may result in relatively mild challenges for someone on the high functioning end of the autism spectrum. For others, symptoms may be more severe, as when repetitive behaviors and lack of spoken language interfere with everyday life.
From www.autismspeaks.org

Resources for faith formation for persons
with autism
  The director of the office of Special Education for Catechesis, Connie Armstrong, is available as a resource for catechists and parents.
  The office has presented workshops on faith formation for children with special needs with an emphasis on autism. There is an extensive email list of catechetical leaders who have expressed a need for information about working with children with special needs. The office can provide updated resources, workshops, webinars and websites. There is also a list available of people who have experience with special needs children who can be of help.
   “We have many new resources in our office for catechists working with children with autism including Autism and Your Church and 1001 Great Ideas for Teaching and Raising Children with Autism,” Armstrong said. “We also have several sacramental programs for children with special needs.”
   For more information, contact Armstrong at (315) 596-4014 or send her an email at carmstrong11@verizon.net.

What Autism Means to Me
   I am a person with autism, but I am not limited. Throughout my life, I have never thought of myself as limited in any way. I am just as outgoing and expressive as any other person. It is just easier for me to express myself in some ways than others. Throughout my life, there were times when I thought I was limited. At first, I felt like I was looking at the world through the narrow end of a funnel; I could not see the forest because I was more concerned with the individual details of one tree at a time. This made it a challenge to communicate with other people and have people understand what I was thinking. However, as time went on, I met people who helped me to open up my view of the world. They showed me how to view the world from other people’s perspectives, how to communicate in a peaceful, polite manner, and how to best express myself in ways that would let other people understand what I was thinking. Through their efforts, I opened up a lot more. I was still limited in some ways, but I could now overcome my limitations and I felt a lot more comfortable communicating with others. I became great friends with the people who helped me to open up, and I still see them very often. I will be forever grateful for the help they gave me.
   I still sometimes feel as if I look at the world through a funnel, but I can now recognize these occasions for what they are. I can now communicate fully with other people and I always try to express my true feelings and thoughts. I am no longer limited. I am a fully blossomed flower, showing my true self to the world without fear.
— Ben Kellogg

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