Living Autistic

Oct 09, 2015



The Kinnard's Share Their Story

April is Autism Awareness Month and, for one family, putting the pieces of their son’s puzzle together has proven challenging. George and Patty Kinnard of Overland Park, Ks. recently shared their family’s story with The Buckner Clarion, revealing what life with autism is really like.

Sam, who was diagnosed with classic autism at the age of three, is described by his parents as a loving, smart and eccentric 22-year-old. Sam and his family have had their fair share of struggle throughout the years, but from that struggle came a stronger family unit with an inspiring story.

Patty knew her son was different at a young age. Operating a daycare during Sam’s younger years, Patty noticed that Sam was behind the other children when it came to reaching expected developmental milestones. “We had noticed that the other kids, who were much younger than he was, were surpassing him in language and other skills,” she said. George noticed differences, too, saying, “Our child could memorize long pieces of dialogue from Disney movies but he could not simply ask for a glass of juice. He would struggle to put a sentence together.”

After placing Sam in an advanced daycare, both parents’ concerns were reaffirmed. Even though Sam adapted well to that daycare environment, teachers who worked with him advised George and Patty to seek professional help for their child.

“They had a long list of concerns, and that spurred us to make an appointment with Children’s Mercy Hospital to talk with a behavioral pediatrician.” Before visiting with the pediatrician, Sam had to undergo a series of tests, including a hearing and vision test that he passed with soaring colors. But it was Sam’s speech therapy session that raised red flags.

George and Patty recalled the specialists telling them, all too casually, that their son likely had autism. “They mentioned a couple of other things Sam could have, but ‘autism’ was just said so easily. I could not even say the word for week. I called it the ‘A’ thing,” Patty said.

She recalled how a feeling of mourning rushed over her family. “It is like the death of everything that you dreamed for your child to be,” Patty said. “After we received Sam’s diagnosis, Patty and I spent a lot  of time being morbidly depressed. I think that is what would happen to any family after receiving such a diagnosis,” George said.

As a protective mother who struggled to cope with the harsh reality that her family was dealt, Patty’s sensitivity heightened as doctors gave her poor counsel. “I literally had a doctor tell me, ‘He doesn’t even know who you are, you are like a piece of furniture to him,’ and I just was in shock for several weeks,” she said. “One day, as I was looking at my little boy watching TV, I remember thinking, I know who he is and he knows who I am. I carried him in my body and I love him. I will never let anyone tell me he doesn’t know who I am.”

Because of the lack of awareness surrounding autism when Sam was diagnosed, George and Patty felt incredibly misinformed. “We were not in denial, we just did not have any good frame of reference because the material out there for the general public and students showed the worst case scenario,” George said. “Autism was not a familiar disability then, like it is now, so obviously we did not want this to be going on with our child. But we were not going to hide our heads in the sand, either.”

As they processed Sam’s situation, George and Patty recalled noticing several warning signs that pointed to autism, and Sam’s language was the most prominent.

“He would often reverse pronouns, calling himself ‘He’ or ‘Sam,’ as opposed to ‘I,’” George said. Both parents remembered Sam being quite stubborn in his routine, disengaging himself with other children in play and showing a lack of sensory perception and processing.

“Sam was big on lining things up, and then would get very disturbed if somebody messed with the order of something,” George said. As far as sensory perception, “Sam could go outside when it was 10 degrees with just a T-shirt, and not shiver. But if we would bathe him in the tub in warm water, he would scream and it looked like he was scalded from the waist down,” George said. Sam also struggled with simple activities like getting a haircut or having his fingernails clipped. “His brain told him that it hurt, and that is really what autism is - the brain is wired differently,” Patty said.

As Sam approached high school, he would endure more difficult circumstances. The majority of his school experience was positive, but staff was not always supportive of his unique needs. “We had almost no problems with any children and bullying, but we did face problems with various staff at the different schools,” George said. “You can tell when somebody’s heart is not in it and they just don’t want to go the extra mile.”

Sam endured an uncomfortable situation during his freshman year, which raised major concerns with the public school system. George explained the experience vividly:

“We had arrangements with Sam’s primary teacher to manage and pass along his lunch money to the teacher who had him during lunch. Most of the time through school, Sam never ate lunch. So there would be a nice lump sum of money waiting for him if he chose to eat. But this particular year, we had passed along his lunch money to a teacher who did not move that money into his lunch account. So when Sam went to lunch one day, he ordered but had no money in his account, and they refused him his food. He got upset and things escalated. The next thing you know, a school resource officer had him in handcuffs.”

After finding out about the incident, George and Patty immediately pulled Sam out of school. “We met with the superintendent the next day, who had spent all sorts of time and effort preparing to defend the school’s position, assuming we were going to threaten lawsuits,” George said. After speaking with the school’s superintendent, George and Patty knew he was indifferent to Sam and his disability.

George recalled telling the superintendent, “I bet you know the name of every football player, cheerleader or gang member in the school, but how well do you know the kids with disabilities?” The superintendent’s response was cold, “Well, I know the ‘wheelchair kids.’”
“I just looked at him thinking, ‘You guys put a kid in handcuffs who still believes in Santa Claus, the Easter Bunny and the Tooth Fairy, and you felt it necessary to do that?’”

George, Patty and Sam moved forward and grew stronger from the experience. George and Patty agree they have learned so much about what is often misinterpreted in children with autism.

They also want to stress that Sam and other children like him are capable of love. “Much of the world assumes children with autism are incapable of love - and nothing could be further from the truth,” George said. “You may have to look a little harder to see their responses to know that they are giving you a loving response, but they are absolutely full of love and feel that emotion.”

Looking ahead, George and Patty want to continue helping Sam grow as a young man and keep him close. “What we envision is that we hope we are going to be happy and healthy and live all together as long as that is what he wants to do.”

Because Patty has cared for Sam for so long, she has legitimate fears about letting him go. “George said long ago that the thing with having a child with a disability is that you suddenly belong to a club you never asked to join. You just get thrown into it, and I have literally prayed to God for Him to let me outlive Sam. One of the most terrifying things to me is not being there for him,” she said.

Fears aside, the hardship this family has overcome has led them to be content with just “winging it.” And because they know there is no single formula that works for all families, George and Patty take pride in their son, who he is and who he will become.

“I have had people ask me over the years, ’If they came up with a cure for autism and you could cure Sam, would you?’ I always respond with, ‘First of all, it is not a disease and if you cure him that means you would be rewiring his brain. If you rewire his brain, then he would not be the person that he is - and I love the person that he is. I not only love the person that he is but I like the person that he is. I don’t want a different person,’” Patty said. “He is my and George’s everything, and he always will be.”
 

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