'An amazing piece of the puzzle'
The Kentucky Standard - 4/8/2018
April is Autism Awareness Month, and autism spectrum disorder is believed to affect 1 in 68 children in the United States. Every child with autism is affected differently.
Lee Miller sits on the floor of her son's "playroom," laughing with him as she tickles his sides, and he flashes a big grin. It is a space in their Botland home that is just for him. It is a safe haven where he can swing, play, relax and recharge when things become overwhelming in between his therapy sessions. The dedicated room is important for 9-year-old Kaleb, an affectionate, funny, blue-eyed little boy who happens to have autism.
As a growing infant, Kaleb hit all his milestones until around the time he turned 2-and-a-half. It was then that his parents, Lee and Jacob, noticed their son started to "lose language." At 2, Kaleb had been speaking about 20 words, but that usage started to fade. He was not completely nonverbal, though. Kaleb talked all the time, but his words were not meaningful.
"He could repeat an entire movie, but couldn't tell you his name or that crackers were what he wanted to eat," Lee said.
Kaleb cried often, as this barrier made it difficult to express what he wanted or what was bothering him.
"In the beginning, I didn't think it was autism, mostly because I had a big misconception of what autism was," Lee said. "I had babysat for a child growing up that had autism, and they had nothing in common. They are both on two totally different ends of the spectrum."
The few people with autism Lee had been exposed to before Kaleb was born did not like to be touched or hugged, she said. But Kaleb craved deep pressure. He would also make eye contact with her, though she would later realize he had trouble making eye contact with others.
After Kaleb enrolled in the 3-year-old program at Bardstown City Schools, the Millers put in for an evaluation. By that time, after reading articles and studying Kaleb's behavior more closely, they knew autism would be confirmed, but Kaleb was almost 4 before he received an official diagnosis.
Being blessed with Kaleb has taught Lee and Jacob a lot about autism. Most importantly, that every child is completely unique.
"If you've met one kid with autism, you've met one kid with autism," Lee said.
Autism spectrum disorder, as it came to be called in 2013, can include a wide range of challenges and characteristics, from social skills and behavior to communication and unique talents that differ from child-to-child. As in Kaleb's case, he is affectionate, while some other children with ASD are not.
Something unique about Kaleb is that he loves logos.
The discovery started around the time he was 3 or 4 when he became excited about a volleyball game on TV, or so his parents thought. It later turned out that the event was aired on NBC, and Kaleb was captivated by the colorful peacock logo. It is still one of his favorites today, but he enjoys other logos as well.
He not only recognizes the logos, he can also quickly recognize many of the characters, TV Shows and other items associated with those logos - something that might go unnoticed by others.
Kaleb is very intelligent, but also very literal. He loves electronics and watching himself in videos. He is a near master at mimicry, and he hates the sounds of crying babies and mooing cows. Kaleb has hyperlexia - a precocious ability to read - and can read nearly anything placed in front of him, though he still struggles with reading comprehension. He is comical, often making his family laugh, and he is passionate about a lot.
In the five years since his diagnosis, Kaleb has progressed in his behaviors and communication, being helped along the way by his loving and supportive family. While he may not sit down and carry on a full conversation, he no longer has an issue expressing his needs and wants. He has also learned to better self-comfort and has had far fewer "meltdowns" than he did when he was younger.
The therapy sessions and resources Kaleb has access to have benefited him, but parents finding the right fit for children can be challenging, as their needs differ.
"Each child is different," Lee said. "What works for Kaleb, won't work for them."
The varying degree of autism spectrum disorder is something Lee has witnessed firsthand as a special education assistant with Bardstown Primary School.
Lee works with students on accomplishing their specific goals and tasks. She has worked in that position for three years, and while Kaleb has graduated to the elementary school, he was the motivator for her taking the job.
"I just thought, since I was already doing it as his mom, I might as well do it as a career, too," she said, adding that the work with Bardstown has presented a family atmosphere and she has enjoyed watching her son and other children grow and develop.
Perception and understanding
Lee would not change her son for the world, but she would change the world for her son. Accepting the diagnosis was not as difficult as adjusting to the way people reacted toward Kaleb.
"Seeing him as a mom, I think it's different. You love your kids for who they are and who God gave you. He's amazing the way God made him, and I wouldn't change him even if I could," she said. "Hearing other people talk about his deficits was difficult because I saw him as this amazing little human being, and I still do."
In raising a child with autism, the Millers have learned to become advocates.
"The older he got, the more I realized it's my job as a parent to teach other people why he's different, and that it's OK," Lee said.
It used to bother her, she said, when people would stare and judge if Kaleb became overwhelmed in public and wanted to sit on the floor. The older he got, the more certain behaviors were frowned upon. But they will not keep their son home or exclude him from activities. They do not restrict Kaleb's life, and Lee encourages people to ask questions, rather than assume.
"There's been so many times I've sat in the floor and tried to comfort my son," she said, all while faced with whispering from strangers on how she should learn to discipline her child. "Just because you can't see the disability, doesn't mean it's not there."
When asked if she had any advice for other families raising children with autism, Lee reminded them, "nothing has changed."
"Their child is still the child they loved five minutes before the diagnosis," she said. "He's my Kaleb. He's always going to be my Kaleb and having the word autism as a diagnosis is not going to change that."
To learn more about autism, awareness and resources, visit autismspeaks.org.