Love For Son Keeps Dad Focused
James East catches his breath after bouncing on the backyard trampoline with his 9-year-old son Aiden. “I’m his best friend and playmate pretty much,” James laughed, bending over at the waist to rest his hands on his knees. Aiden bounds from the trampoline to the ground, quickly grabbing a Frisbee and chasing their 1-year-old standard boxer, Scooby, around the yard. Aiden has the energy of most 9-year-old boys, but, for James, interaction with him is complicated by Aiden’s autism.
Playing outside with Aiden and Scooby is a nice break for James. The majority of his day is spent straightening up the house, doing laundry, cooking, running errands and patiently parenting Aiden. By the end of the day, James is exhausted. “He sleeps well at night. That’s a nice break for both of us,” James said as he takes his son’s hand to direct him through the back door of their Broken Arrow home.
Aiden is greeted in the kitchen by Behavioral Intervention Group of Tulsa’s (BIG) Director Mindi Pohlenz, BHBA and BIG Applied Behavioral Analysis (ABA) Assistant Tiffany Bjorlie. The two women guide Aiden to a room where his therapy session continues.
The brief period of quiet allows James to sit on the couch. He explained that eight years ago Aiden seemed like a typical baby boy. But by the time Aiden was 2, he was showing few signs of talking.
“Aiden’s mother Christina and I took him to a speech therapist for awhile, but we did not notice much of a difference,” James said. “I really was not that concerned until I took Aiden to church day care one day and when I left him I could hear him screaming as I headed to the parking lot. I just sat there in my car listening to him scream. That is when I began to think there was a problem.”
As Aiden got older, he became less interactive with people, offering little verbal communication and eye contact. He was easily agitated and began to scratch and bite himself. James and Christina eventually divorced. James immersed himself in his work at QuikTrip Corporation and Christina remarried and moved to North Carolina, taking Aiden along. In North Carolina Aiden attended a small, private school and participated in daily ABA therapy sessions.
“At that point in Aiden’s life, I was not present,” James said. “I was focused on my career and not on being a dad. I really regret that now.”
Two years ago Christina and her husband had a child, and it became very difficult for her to handle both Aiden and the new baby. She told James she was going to place Aiden in an institution for children with disabilities.
“I didn’t want my son institutionalized, so I left for North Carolina that day,” he said. “I picked up Aiden and brought him back to Oklahoma. It was a day before my 31st birthday.”
Aiden’s frenetic and unpredictable behavior meant a big change in James’ daily life. With the advice of a doctor, James altered Aiden’s diet to gluten free and took him off his medications.
“That backfired,” James said. “Over time he became less and less controllable and began to really self injure. He lost a lot of weight.“ James changed doctors and Aiden was placed back on medications and started ABA therapy.
The primary concept of ABA therapy is that when a positive behavior is followed by some sort of reward or praise, the positive behavior is more likely to be repeated. ABA, most often used with children on the autism spectrum, works to advance skills such as listening, conversing and understanding another person’s perspective. Children participating in ABA therapy over time demonstrate improvement in communication skills, social relationships, play, self-care and school.
ABA has been endorsed as an effective intervention for autism by the American Academy of Pediatrics and the United States Surgeon General.
Polenz said BIG offers specialized programs that are adapted for children across all levels of the autism spectrum and are tailored to suit an individual child’s needs. Children are taught on a one-on-one basis.
“Our point of differentiation from other providers in our field is our willingness to use any technique necessary to help children achieve their goals and to ensure they are motivated to learn,” Polenz said. “At BIG we have vast experience with children throughout the spectrum, working with those who are significantly affected to those who are much less affected but require social skills training and a much higher cognitive approach.”
Currently Aiden is a homebound student in the Broken Arrow Public School District. He did attend school two hours a day until his behavior forced the school to request homebound instruction. James no longer works for QuikTrip. “It got to a point where I was either not able to make it to work because of something with Aiden, or I was called away from work. QuikTrip was great to me, but for now it is best I be available to my son all the time.”
Each weekday Mindi Polenz or Tiffany Bjorlie comes to the East home for a two-hour therapy session with Aiden. One day a week both therapists hold a family meeting at the home in order to share Aiden’s progress and setbacks with James. They also teach James skills he can use to manage his son.
A spare bedroom has been transformed into Aiden’s therapy and playroom. Lego, various toys and a child-size table and chairs occupy the carpeted room. A window provides natural light.
“When we first started to come here I could not get Aiden to even sit on the floor with me and engage in an activity for a brief period of time,” Bjorlie said. “He was very agitated and was self-injuring often.”
Now seven months into ABA therapy, Aiden sits in a chair at the table across from Tiffany. He successfully attempts several tasks involving the recognition of numbers and words on note cards. He recites his street address by following the words on a lined sheet of notebook paper with his index finger.
“All of these tasks give him information he can use,” she said. “We want him to know his full name, his dad’s name, his street address and his phone number. This information will help keep him safe. By recognizing numbers he can eventually attempt some basic addition and know how to use money.”
Aiden earns reward time when he successfully completes the tasks. His reward choices include playing outside, playing Sony WII or eating a snack such as an apple.
Polenz praised James for his consistency and follow-through with his son. “No matter what, James stays on course,” she said. “That is making a big difference. Aiden has come so far with all the work we are doing. He has made huge strides and rarely self injures. The reality is, if Aiden is left to his own devices he does not know what to do with himself. He needs input, schedule and structure and James is providing that.”
James is honest about the future. “I don’t know what the future holds for Aiden and me. But now he has his dad when he wakes up in the morning and when he goes to bed at night. There is no way I can quit on him. I love him too much.”
To learn more about Behavior Intervention Group of Tulsa visit www.big4autism.com
To learn more about Applied Behavioral Analysis (ABA), go to www.autismspeaks.org (click on “What is Autism?” and then “treatment” on the left side of the screen.)
Geography Dictates the Care a Child Gets
According to Tiffany Bjorlie, Aiden would not receive the care that he has without access to Tricare, a resource for U.S. Military families. Without this resource, intensive behavior therapy would be beyond his reach as there is no coverage through Medicaid or private insurance in Oklahoma for Advanced Behavioral Analysis (ABA.), even though it is recognized by numerous studies and the United States Surgeon General to be the most effective and appropriate method of teaching and working with children on the autism spectrum.
According to www.autismspeaks.org:
- 32 states have enacted autism insurance reform, requiring coverage in state-regulated and Affordable Care Act (ACA) health plans.
- Of those 32, Ohio requires coverage in ACA plans only, and 6 other states require autism coverage in state-regulated health plans or plans for state employees, but not ACA health plans.
- Oklahoma requires no autism coverage.