Twirling Mateo’s blonde Labradoodle curls and whispering gently into his ear, this adorable little man has climbed great mountains to reach a pinnacle in his young 10-year-old life. Handsome, articulate and ever-so-sweet, Jackson Tillman introduces Mateo: “This is my new buddy, Mateo. He’s a service dog, and he loves to play ball with you . . . loves to cuddle with me, and I love to pet him every day.”
Melt my heart.
Jackson has autism. In simple terms, autism is a condition or disorder that begins in childhood and that causes problems in forming relationships and in communicating with other people. As his mom Berly Tillman Sullivan (executive director of MentorKids) said, Jackson was non-verbal and a runner. Faced with ‘fight or flight,’ he chooses to flee. “I believe that with autism, genetics loads the gun and the environment pulls the trigger,” Berly said.
From the moment Berly’s intuition told her that something was not right, that she was losing her son by degrees, she began documenting and researching—immersing every fiber of her being into discovering what interventions (traditional, dietary, medical) could be tapped to rescue Jackson from the grips of autism. “It was like daily going to the gates of Hell and fighting with everything I had to pull my son out of himself,” Berly said. It has been a wild, emotional rollercoaster ride, to say the least. As a post on her Facebook page says, “A worried mother does better research than the FBI.” That research has led Berly down many paths, but perhaps none that have benefitted Jackson more than his autism-trained service dog, Mateo.
A friend (Jennifer Kent) from Evansville, who has an autistic son the same age as Jackson, introduced the idea of a service dog. Jennifer was at an airport and saw those all-important words on the dog’s vest: Autism Service Dog.
The catch-phrase of Autism Service Dogs of America says, “A child who connects to a dog connects to the world.” They cite eight attributes of an autism service dog:
1. Helps keep the child safe through the use of a tether system;
2. Reduces anxiety at home, school, and in the community;
3. Facilitates and encourages communication and eye contact;
4. Increases confidence and allows for greater independence;
5. Teaches the child how to build social relationships;
6. Provides deep pressure to help regulate sensory needs;
7. Uses nudging to reduce behavioral or emotional outbursts; and 8. Allows the child to participate in family activities.
Online searches reveal a variety of service dog agencies, yet not all are created equal. Again, Berly implores parents to research thoroughly. “This is where you have to be careful, and I cannot stress that enough,” Berly said. An improperly trained dog could be a disaster, as they are dealing with tremendous amounts of anxiety daily. Mateo was in training for two years—literally, 24 hours a day. In Berly’s opinion, the safety component of a service dog is first and foremost. In public, Jackson is tethered to Mateo, who can go into a ‘down’ on command and prevent ‘flight.’ The social component is secondary, yet extraordinary. Mateo can detect if Jackson is becoming anxious long before any adult would notice. Mateo gently nuzzles him, which provides a calming effect—even lowering Jackson’s heart rate and cortisol levels. When Mateo looks up or raises his head, he is doing that for a reason; he is conveying a message about Jackson.
Getting a service dog does not happen quickly. It took three years from the initial idea to actual receipt of Mateo. The Sullivans were responsible for raising $13,500 to be put on the wait list. They paid for their flight to Portland, Oregon, for a weeklong training, as well as any additional expenses for food, lodging, and transportation. They were also responsible for the trainer’s flight to Owensboro.
Training the dog’s family is key. Consistency in commands and expectations are paramount. Berly and her husband Darin had to read three books before they flew to Oregon for training. They had eight pages of homework and real-life ‘field training’ from the moment they got up until they went to bed, Monday through Friday. Then, they were tested. The Sullivans continue to train with Mateo in some manner daily.
So how did Jackson react to his first meeting with Mateo? “We envisioned this grandiose, Hallmark-like moment, and it didn’t happen. We got home and Jackson sat down (it’s on family video) and said, ‘Oh, hi, Mateo,’ and then left. That’s autism. That’s Jackson,” Berly said. Later that day, Jackson and Mateo played ball. That night, Mateo was lying on the floor in Jackson’s bedroom. Jackson said, “Hey, you’re not supposed to be down there; you’re supposed to be up here with me.” There’s your Hallmark moment.
Berly and Darin had plenty of concerns/reservations about having a service dog: “We had TONS! Would Jackson allow the service dog to help him? Would he bond with the dog? Was I setting Jackson and/or our family up for failure and/or another disappointment? How would the community react? How would the school district react? I can barely keep our heads above water – will the extra responsibility be the thing that drowns us?”
The answers to those questions have been overwhelmingly profound and positive. Testimony of this continues to flood Berly’s Facebook page: “While in the car this afternoon coming back from picking up my kids, my son began talking about Jackson and Mateo. He is also in Mrs. Horn’s homeroom (at East View Elementary). Anyway, he was telling us how good Mateo was and how he just stays right with Jackson. He went on to tell me how Mateo has been good for Jackson! He said Jackson used to get upset in Math and now he doesn’t. Mateo calms him down! Wow!!! That is coming from an 8-year-old! It’s amazing to me how even my child can observe this! I just thought you’d want to hear what a fellow student thinks. God definitely put those two together,” wrote a parent whose son is in Jackson’s class. Jackson is now mainstreaming in third grade.
Berly also posted school notes from Jackson’s aide. They confirmed Mateo’s impact. Jackson spent more time in class than in the self-regulation room. “For the first time (as long as I can remember), Jackson did not go to his room to recover from a meltdown . . . and no adult had to call for one,” Berly wrote. His teachers have noted a significant decrease in meltdowns, improvement in behavior, and greater participation in class.
A service dog presents a few challenges, nonetheless. “He’s another person to take care of, to exercise in the morning and evening. Mateo needs constant training (reinforcement), and our morning routine has increased by 20-25 minutes,” Berly said. Jackson is now participating in Mateo’s care. “They started a ‘workout’ every morning together before school. Jackson is on the elliptical and Mateo is on the treadmill. It’s super cute.”
Jackson’s sister, Katherine, age 8½, also has her brother’s back. Once when they were playing at the park, another child called Jackson a freak. “He’s not a freak; he’s my bubby,” Katherine said. The unintentional unkindness of people prompted Berly to stay home more than to go out in public. That has dramatically changed with Mateo’s arrival. Their goal is to enjoy at least two outings weekly.
“Mateo has given me confidence and given me peace . . . he’s helped me as much as he has Jackson,” Berly said. “I love him. I love him for allowing me the freedom to breathe by knowing that Jackson will always have someone with him that loves him – especially when I cannot be there.”
Darin reaffirmed Berly’s tireless devotion as Jackson’s voice, protector, and advocate. She is equally passionate about educating and helping other parents of autistic children. “With so many parents who have a child with a special need, (it’s so important) to have hope and to step out in faith whenever the odds are that it’s probably not going to work out the way you wanted it to, but you still have to do that – step out!” Berly said. “Dealing with autism can be overwhelming, but knowledge is power.”
If interested in getting an Autism Service Dog, “Research. Research. Research,” Berly said. Check the credentials and references of any agency before applying for a dog. “Remember that getting a service dog is a life-time commitment. To do it properly, you need be prepared to train, train, and then train some more; set aside one hour a day to exercise the dog.”
Above all, when you encounter a working Autism Service Dog, remember the 3T’s: 1. No talking; 2. No touching; and 3. No teasing.
The long-term hope for Mateo in Jackson’s life is to help him maneuver his way into adulthood. In that role, Mateo is living up to his name: a gift of God.
This article was published in the March/April issue of Owensboro Parent Magazine.