Learning to manage a child’s autism with limited communicationJune 4, 2015
(Kokomo, IN) Beth Krueger sat on the porch of her West Jefferson Street home one sunny afternoon in late April, waiting for the school bus to drop off her 16-year-old son Jaydan Murphy.
Jaydan stepped off the bus with a huge grin on his face, laughing and waving to his mother. She took his hand and the two walked up the sidewalk to their house.
Jaydan was diagnosed with autism when he was 1-and-a-half years old. He is mostly non-verbal, able to communicate in one- or two-syllable sounds or through his own version of sign language.
“He gets his point across,” Krueger laughed. “He does gestures, sign language. He doesn’t do complete sentences, but he has a communication device.”
It had been a week since Jaydan was last home. He was staying at his father’s house while Krueger recovered from a back injury. Jaydan clapped his hands and pumped his fist in the air while laughing, leaving no doubt he was happy to be home.
He also insistently patted his thigh, a gesture that Krueger says means he wants his pillow – a source of security for him. While waiting for Jaydan's father, Rickey Murphy, to bring the pillow from his house, Krueger started making Jaydan's favorite food – pizza, or as he calls it, “pa-pa."
Soon enough Rickey stopped by, just long enough to drop off the coveted pillow in its faded plaid pillowcase and Jaydan's report card with all A’s and B’s. The father and son exchanged their own set of signals to tease Krueger and then said goodbye.
After going through the stack of children’s books appropriate for elementary-aged students in his backpack, Jaydan is soon settled comfortably on the couch, his special pillow on his lap, eating pizza and holding his mom’s hand. They sit side-by-side watching the educational cartoon “The Magic School Bus."
When Krueger and Jaydan look at each other, neither one needs to speak to say, “I love you.”
Two-and-a-half miles away, second-grader Colton Smith arrives home from school about an hour after Jaydan does every day.
Colton also has autism and is non-verbal, and like Krueger, his parents have rearranged their lives to care for their special needs son. It takes creative solutions, patience and adaptation, but the families will do whatever it takes to make sure their children receive the services they need to learn, develop their communication skills and work toward a life of as much independence as possible. The families don't do it alone, either, as schools, private centers and community-based programs offer additional support and expertise.
When Colton arrives home from Bon Air Elementary School, he likes to watch movies or play on his tablet until bedtime. His mother, Leslie Brannon, says they have tried to keep Colton entertained with different types of toys, but he likes to put things in his mouth and keeps coming back to a balloon game or Angry Birds on his tablet anyway.
Daniel Brannon, Leslie’s husband, describes Colton as a typical high-energy 8-year-old who likes Ninja Turtles and listening to music.
“The only difference with him is he hasn’t figured out the whole speech thing yet,” Daniel added.
One afternoon in May, Leslie and Colton sat side-by-side watching the movie “Robots.” Colton is almost constantly in motion, rocking back and forth on the couch and occasionally clapping his hands or smiling. He stops moving only to play a game on his tablet.
Colton was diagnosed with autism when he was 2-and-a-half years old, and it has been an ongoing learning experience for his family as they accommodate his special needs.
“I noticed he wasn’t like my [then] 3-year-old. It was like overnight he couldn’t speak anymore, so I knew something was off,” Leslie said. “It’s new to us still, even though he’s 8.”
A communication program on Colton’s tablet allows him to select simple phrases like “I want,” “I am” or “eat” and then push other buttons to fill in the blank with different foods, places and things. Leslie isn’t sure Colton fully comprehends what the buttons mean, and they have an upcoming appointment at Easter Seals Crossroads disability services in Indianapolis to learn about some other options for communication devices.
The Brannons and Krueger both sought services through Bona Vista Programs Inc., a service provider for children and adults of all abilities, when their boys were younger. Jaydan worked with Bona Vista staff at home and received occupational therapy, physical therapy and speech therapy there until recently; he now receives services through Kokomo Schools.
Jaydan also has the option to communicate through his school-issued iPad by selecting pictures of what he wants.
“I think he’s wanting to start talking more,” Krueger said. “He’s wanting to gibber-gabber more so I upped the speech [therapy] in November.”
Colton attended Bona Vista for preschool and received services through the First Steps program prior to that. He then attended kindergarten and first grade at Eastern Elementary School. His family lived in the Taylor Community Schools district at the time, and Eastern was the closest school that offered a special education class through the Kokomo Area Special Education Cooperative, which is a collaboration among seven area school corporations to provide special education services. The Brannons have since moved to Kokomo, and Colton now attends Bon Air.
Jaydan attended several schools before he reached high school. He went to Pettit Park Elementary School for kindergarten through second grade and then attended Darrough Chapel for third and fourth grade, back when it was an elementary school. He moved to Sycamore Elementary School in fifth grade and spent his middle school years at Maple Crest Middle School before starting high school.
Routine – whether at school or at home – is important for children with autism. Lisa Steward, owner and director of Indiana Behavior Analysis Academy in Kokomo, is aware of the demands parents juggle at home in addition to caring for their special needs children.
IBAA’s registered behavior technicians provide medical services for individuals with autism from birth to adulthood, focusing on early childhood when intervention is especially important. IBAA staff can monitor a child’s behavior every 15 minutes at the center, Steward said, which may not be feasible when parents are preparing dinner and taking care of other children at home.
“That’s not a criticism at all. That’s the reality,” she said. “We realize parents have a lot of responsibility in the home, and they’re often juggling multiple kids and responsibilities. We understand it’s more difficult for them than it would be for us in a center environment. Anytime you’re looking at the behavior of a child, there’s never a one-size-fits-all behavior plan.”
People with autism experience challenging behavior, sometimes called a "meltdown," which can be triggered by sensory overload, being unable to communicate their wants or needs or having trouble coping with a change in their routine or a new situation, among other things. In most instances, what's referred to as a meltdown is a loss of control over one's behavior, not a conscious reaction, and it is important for parents and caregivers to know triggers and warning signs that a meltdown may be coming so they can de-escalate the situation and help the child calm down.
“Really what’s important is looking at why the behavior is occurring,” Steward said. “You have to look at the interventions and make sure they address the function of the behavior.”
Colton takes medication to help manage his behavior, but crowds are an issue for him so most of his meltdowns happen in public. Leslie says she tends to “baby” Colton, while Daniel lets him work through the meltdown and hopes that exposing him to different situations will help him learn to cope with them.
Jaydan also takes medication to help with his behavior and prevent seizures. Krueger says he's most likely to have a meltdown when he’s denied food when he wants it, and he tends to run from the classroom if he gets the chance at school. She has considered keeping locks on her cupboards and fridge to keep him from getting to the food, and she usually just leaves the room if Jaydan starts trying to hit, kick or push her during a meltdown.
Sabra Rennaker, an occupational therapist who works at Bona Vista and specializes in autism and feeding disorders, recommends parents put together a “meltdown kit” to help their child regain control if they become overwhelmed while in public. The kit could include ear plugs to block out noise, a toy to fidget with or a weighted blanket, Rennaker said, depending on what works for the child.
Raising children who think differently requires their families, likewise, to approach life differently, but Krueger says Jaydan is her motivation to keep making those adjustments.
“He’s happy-go-lucky. You couldn’t even tell that he was so confined in his life, his school and home,” she said. “He brightens my day. His smile just brightens my day.”