At some point during the early days of the pandemic, I found myself endlessly scrolling through YouTube looking for videos about service dogs; particularly those featuring children who resembled Mark. I needed to understand how a dog could bond with a boy who had zero interest in relationships. And I found proof, lots of it actually. It seemed that dogs had a way of making it through the autism forcefield to become acceptable company for kiddos who typically like to be alone. I wanted so badly for this to play out in our home so when the service dog agency said they had a dog for Mark, much sooner than we anticipated, we rolled with the momentum and set up a Go Fund Me. Fully expecting to host multiple fundraisers to amass the funds needed, we were shocked and humbled when our incredibly supportive village of family and friends helped us meet our fundraising goal over Thanksgiving weekend. The pieces were falling into place and by the first of the year we were gearing up to welcome a new member into our family.
Sully, a large white Goldendoodle, arrived in mid-March. The introduction was slow and I was incredibly anxious, fully convinced we were doing everything incorrectly. I felt tremendous, self-imposed, pressure to create the perfect environment for bonding. After a few weeks, Sully blended into our home and family. Mark wasn’t bothered by Sully’s very large presence so we considered it a win. Jillian, who previously feared dogs, was fascinated, intrigued and eventually fell in love with him. And Luke was his Luke self, along for the ride and happy to be there.
In order to set the stage for friendship to bloom, we kept Sully and Mark together at all times. They slept in the same room and each morning and evening, we would assist Mark with feeding and giving treats so Sully would associate Mark with good things. His ABA therapist even incorporated caring for him into Mark’s sessions.
Each night we worked on training. Though Sully had been trained in Michigan, we had to practice each of his tasks with Mark. He was trained to tether, so we practiced walking around the yard attached. He was also trained to provide cuddles in the form of a big bear hug, so we practiced that too. He was tasked with blocking Mark from eating non-food items, so we would give Mark an item to mouth and then give a command, followed by a treat to reinforce the blocking behavior. Our eventual hope was to get Sully to help Mark recognize the need to head to the bathroom. All things designed to help Mark gain independence.
As we anxiously waited for glimmers of bonding, we began the arduous task of navigating his transition to school. His teacher was incredibly supportive, but we knew the bigger battle would be with the administration. And we were right. The biggest issue we had was our district’s interpretation of the policy which stated: “the dog must be under the control of the handler”. Other than an iPad and a hand counter, Mark doesn’t take ownership or control over anything. Between the two, Sully was the more capable one. The way we were able to navigate this hurdle was by tethering Mark and Sully. We bought a special belt that went around Mark’s waist and attached it to Sully’s harness. Sully was trained to move with Mark, so essentially this should have satisfied the requirement.
Though the resistance was prominent, we continued pushing. If we didn’t send Sully to school with Mark, the bonding battle would continue to be uphill. We held a meeting to talk about the transition. It didn’t include the paraprofessionals or providers who would be working directly with Mark and Sully, oh no, it included several administrators from the district’s central office, all of whom never met Mark. We included the Executive Director of the service dog agency, who happens to be a school psychologist, as well as a parent of another child in the district with a service dog. We didn’t want to hear any “we don’t do that” type language when we know they do in fact “do that”. It was cordial but definitely left us feeling apprehensive about their willingness to work with us.
The night before their first day of school together I received a phone call from the principal. They had a problem. In order to have Mark be in control of Sully, verbal commands were required. We were under the impression that the teacher and paraprofessionals would give Sully the commands, like sit, stay, etc. in order to help Mark remain “in control”. The school system interpreted the school team’s help as breaking their policy. At first, I panicked. Our family and friends gave us so much money to make this happen. We had worked so hard, and now it felt like it was slipping away. After the panic subsided, anger kicked in and I decided to call the ADA myself to challenge the school district’s policy. And wouldn’t you know, there was a case settled in favor of the student just the year before, which cited a school district’s discrimination against a non-verbal student. Mark can’t give commands, so because of that, you’re going to prevent him from accessing his service dog, which is considered durable medical equipment? That would be like telling a child they can’t access their wheelchair if they can’t get in and out of it independently. So I sent the case law to the superintendent who replied and said to work with the school team. The tennis ball volleyed back and it was decided that the team would model the verbal commands for Mark so that he would repeat them to Sully. Such a game, but we played along.
Sending Mark and Sully to school without our constant vigilance was honestly very scary. It was even scarier knowing that everyone was watching; the school administrators, the central office visitors, and other parents. With the exception of Mark’s amazing teacher and classroom paras, we felt like everyone was waiting for us to fail. His teacher kept track of the number of redirections and we worried that it would be too disruptive to the school day. Though there were some bumps along the way, like Sully being startled by the trash can and barking, eating Mark’s sandwich and a few other dog infractions, over time these decreased and they found their rhythm. They even participated in field day together. We finally made it to the end of the school year but the relief of being out from under the microscope was short lived because this is when Mark unraveled.
One day over the summer I was standing in the kitchen and heard Mark softly singing the song we know will always lead to a meltdown, Old MacDonald. The singing got louder, and then he began aggressively pacing, then jogging around the house. I heard the iPad hit the floor. Then Mark hit the floor. He began slamming his knee caps into the hardwood. I attempted to comfort him but he angrily sprinted to the kitchen. He then started pushing everything off the kitchen island. He was this little tornado twirling through our home and nothing I did or said made a dent. He then hopped onto our window seat, grabbed one of my plants, and chucked the terracotta pot to the floor. I grabbed his arms and made him look at me. I firmly told him “no” and then retrieved the broom so that he could help me clean it up. As I turned my back, he threw dirt at me. All patience was gone. I yelled, which I almost never do, and I firmly grabbed him by the shoulders and told him to cool down on the porch. I slammed the front door so that I could cool down too. As I swept up the debris from his wake, I glanced outside and saw him calmly gliding on the porch swing, coming out of his angry trance. After a few minutes, I joined him. I apologized for yelling. He smiled, looked off in the distance, and we were both happy to be on the other side of the storm.
Sadly, this type of meltdown would repeat itself multiple times per day over the months to come. Mark would rip pictures off the wall. Throw anything in his sight. He even grabbed my podcast mic, ran outside and chucked it over our fence. Incidentally, I never found it. As the storms became part of Mark’s daily routine, he would seek Sully for comfort by grabbing onto his fur. Initially, we were relieved to see that a bond had finally formed, but this was quickly replaced with worry when the grabbing turned aggressive. Mark began attacking Sully. For anyone reading this unfamiliar with him, this was completely out of the blue and character for our gentle boy. Mark would lunge toward Sully, and we always intervened by separating them to prevent anyone from being injured.
Behavior is communication, and for a child without words, it’s their SOS. Something was very wrong, so I started messaging all of his providers in their respective portals. Everyone had a different theory and route for treatment. Perhaps an antibiotic, a psych med, a better mode of communication, etc. The behaviors continued to escalate and became very difficult to live with and care for. The “hard” that I previously knew was a distant memory, replaced with this nightmare. These episodes were becoming increasingly more frequent so I called his pediatrician but they had no same-day openings. They told me to take him to the ER if it was as bad as I was suggesting. Yes, the emergency room during a pandemic is the perfect place for someone in need of possible psychiatric intervention. I called the pediatrician back an hour later hoping for a more sympathetic nurse and I got one! They could see him in 30 minutes if we hurried. We entered the room and immediately Mark began ripping the paper off the bed, screaming and raging. He then turned to attack Sully. I stood guard in front of Sully and Ike held Mark back from getting to him. I vividly remember this moment, and I thought “how did we get here?”
The pediatrician determined that Mark had some type of infection by the appearance of his throat. Thinking we had found the reason for the rage, we happily left with an antibiotic script. A few days later, his anger had significantly decreased, and I thought we had solved the mystery. Sadly, it was short-lived and I would continue to play defense between Mark and Sully. As the months went on, we all knew our posts when the storm began to brew. The other kids would scatter, Ike would try to keep Mark from hurting himself, and I would send Sully outside. All of this made Sully very anxious, insecure and he became overly attached to Ike. We saw Sully changing, becoming traumatized and it wasn’t fair to him.
By fall, the writing was on the wall. We could no longer trust them alone together, and after months of consideration, we made the difficult decision to send him back to Michigan to the service dog agency. The weekend was filled with tears and lots of whys from the kids. Jillian had lost her furry best friend, and in a season where she needed one the most, he was gone. She still sleeps with his collar and tag attached to her bedpost, watches the slide show she made and listens to songs that remind her of her time with him. For her, Sully was a way to overcome her fears, a comfort during her traumatic blood draws, and a way forward when we entered the ugly school refusal phase. For me, he was a welcome distraction to my big career changes, the grief over losing my grandmother, and the trauma of parenting children with intensifying needs.
We FaceTimed with Sully once he arrived in Michigan, and have kept up with his updates on Facebook. He’s a busy guy who has found a new job visiting schools, bringing comfort to other kiddos, which makes us incredibly happy.
We eventually found out that Mark was suffering from a rare form of epilepsy called ESES that robbed him of actual sleep at night. Our boy was a literal sleep-deprived zombie and the diagnosis explained a lot. It is currently controlled with medication, and the meltdowns have all but ceased.
Our service dog organization will provide a replacement dog in the event that the original placement wasn’t suitable. We have decided to give this another try now that we are getting Mark’s medical needs met, but this time we will train a dog to meet our family’s needs, and not just Mark’s. The agency also suggested we pursue getting a lab, as they may be more tolerant and less anxious around children compared to a doodle. The dog will be certified to go in public places but won’t go to school. The stress that was associated with our district isn’t worth repeating.
Looking back, I can see now that Sully’s season with us was filled to the brim with purpose. He may not have served in the way we envisioned, but he was a friend to all of us throughout a turbulent year of loss and uncertainty and taught us all quite a bit about patience and persistence.
Several people have asked me about getting a service dog. If you or someone you know is considering this, check out some of our frequently asked questions and answers.
1. What agency did we use and would you recommend them? Canines For Change
We would definitely recommend them.