"I am 5+2+4-1-1 years young. I am divided from you. I see and touch. It does not matter. I live by different rules. Everyday is chaos. My life is not governed. I do not mean what I do. Choice, none. I do not respect order. Time is. Light and dark are. I go. I stop. I hit. I jump. I do not care why. Color, sound, hot, cold, taste, see, strong, weak, cross dIsconnect. Good, bad, same. Memory. Pain. Music. Family, Care, love different. I am smart. Between us, a wall. No sleep."
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. Autism spectrum disorder impacts the nervous system. The range and severity of symptoms can vary widely. Common symptoms include difficulty with communication and/or social interactions, obsessive interests and repetitive behaviors. There is no one type of autism. Autism can last for years or be lifelong. According to the Centers for Disease Control, autism affects an estimated 1 in 59 children in the United States today.
Morgan Olson is raising a son, Nolan, who is severely autistic. To say that her experience raising Nolan is even remotely similar to the same experience most people would understand as raising a son or daughter is so different as to be incomprehensible.
Nolan is 9 years old. Until the age of 2, he was growing up normally by all accounts.
"When he was a toddler, he hit a lot of the physical milestones like crawling and sitting, that kind of stuff. He was actually early with a lot of those. He was able to count up to 20 on his own and he was able to do some talking. He started to regress when he was about 2 years old. He started to lose some vocabulary here and there. We got involved with St. Croix County's Birth to 3 Program when he was about 1.5 years," said Morgan.
Morgan and Nolan began working with the University of Minnesota Health - Autism and Neurodevelopmental Clinic. Morgan and her doctor attributed some of Nolan's early behavioral difficulties to his chronic ear infections. Every time he got new teeth, he also got an ear infection which resulted in three rounds of tubes and the removal of his adenoids.
"We thought hitting his head may have been his way of dealing with the pressure in his ears," said Morgan.
Despite early speech and occupational therapy, including an effort to teach him sign language, Nolan began a steady decline.
Determining whether or not a person's behavior qualifies as autistic is not always an easy diagnosis. As of the most recent edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM) the myriad of syndromes and disorders such as Asperger's Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and Childhood Disintegrative Disorder, previously defined individually as autism have been combined into the overarching term Autism Spectrum Disorder. An individual's condition is further defined by assigning one of three levels of severity: mild, moderate or severe.
Here is why Nolan's care requires a team.
Nolan does not dress himself "although he can undress himself quite easily." He will not pick up a pair of pants or a shirt and put them on himself. He will not put socks or shoes on without assistance. Some days he will put on a hood because he wants the hood. On any given day, he might attack a staff member because there is a zipper on his shirt. Eating requires assistance. Nolan wants to eat everything with his hands. To use a utensil, you have to put the food on the utensil then put the utensil in his hand and direct him to eat it that way. Nolan has a food quirk, he always has food wrapped up in the pocket of his palm. It doesn't matter what it is, he has to have something in his palm all day long.
Nolan's head is responsible for the holes in the walls all around the house.
"Nolan will hit his head repeatedly when he's upset. He'll sit on the heater there and hit his head backwards into the wall until he makes holes in the drywall. As a toddler in daycare, he would hit his head against the cement floor. It's like a stim (stimulus) for him, but at the same time it almost resets him," said Morgan.
It is hard to miss the thick, colorful foam filled mats spread across many floors in the house. During a full scale meltdown, Nolan headbutts the floor.
"The other day, we were getting ready for school. Nolan had to get out of the shower, but he wasn't ready to get out. I couldn't catch him fast enough. He ran to the window, headbutt and shattered the glass," said Morgan.
Nolan is a tall, strong kid and that worries Morgan. She compares it to the strength a mother summons to lift a car off a child in an emergency. She says, "It seems like Nolan is like that all the time."
When he is frustrated, Nolan pulls his hair, tries to yank it out of his head. Sometimes a spontaneous haircut is the only answer.
Nolan likes to remove his diaper and urinate on the floor. He also likes to make bowel movements on the floor.
"Nolan will take his bowel movements and smear them into carpet, on the walls, on his chest. He'll do similar actions with his chest when he's outside with mud and dirt, water, he likes that input of smearing things on his chest. We're not sure why he does it, but he does it quite frequently. We've been working on potty training for well over a year now," said Morgan.
Nolan is also intelligent and he has a great memory. His actions give him away.
"He remembers everything. A cookie in a package, you put it away, he remembers exactly where it is. He knows how to manipulate the safety knobs on doors, on the refrigerator and cabinet handles. Yesterday, he opened the utensil drawer and was throwing all the knives and forks down the steps for cause and effect," recalled Morgan.
Nolan has a troubled history when it comes to sleeping. He requires a combination of three medicines to help him sleep at night, an antidepressant, anxiety medication and Risperidone. Nolan starts to get ready for bed around 6:30 p.m. each night and usually falls asleep between 8-8:45 p.m. Out of necessity, Morgan has become a light sleeper. A glass of milk is ready at the bedside to try to prevent Nolan from getting up in the night. Despite the medications and milk, Morgan frequently wakes up to the sounds of mischief, Nolan throwing things down the stairs or flipping chairs over.
Nolan does not go to the community Easter egg hunt, the school Christmas party, anyone's birthday party, baseball games, the playground, the beach, the mall, take a walk around the block. Nolan is enrolled in Project Lifesaver because every time he steps out of the house, he is a flight risk. His unpredictable, sometimes aggressive behavior puts him and others at risk in social situations. Nolan lives in a box with Morgan, his therapy team, a few family members, two cats, his teachers at school and his trampoline. Nolan loves his trampoline.
Nolan requires supervision 24/7. His team currently consists of WEAP therapists working two shifts daily Monday through Friday from 8-11 a.m. and 2-5 p.m. WEAP also provides for a weekly visit by a supervisor who reviews data, schedules, programming and provides advice. WEAP provides a monthly review to evaluate progress toward program goals from a wider perspective.
At school, Nolan's care and instruction are coordinated by his special education teacher with the help of two paraeducators. His transportation to and from school is provided by a specially trained driver.
At home in addition to his weekly therapists, Morgan receives support from her father Randy, mother Brenda, periodically from her sisters, Jessica and Erica, and Grandpa Ted.
"My parents would say it has been a taxing experience. I was independent working full time when Nolan was an infant and then left a very toxic relationship with his father and moved back with my family when he was a little under 6 months old. With Nolan's progression over time I had to decrease the amount of hours I could work because Nolan needed full attention 100% of the time. I pay my own bills and contribute towards food for the family but going from being able to work 40 hours a week to an average of 11 hours a week has put some financial strain on everyone. That and they don't get to be the grandparents that take their grandkids for a fun weekend, he is home daily with them too," explained Morgan.
Three years ago, Morgan began investigating the addition of a new member to Nolan's support team, an autism service dog.
"One of my sister's friends brought his blue tick healer hound over when Nolan was having a meltdown and the dog went over and laid down right next to him and he just kind of stopped what he was doing and wondered what that dog was doing next to him. In theory it showed it can work for somebody like him," Morgan said.
Why an autism dog
"I have family members who ask, 'Well what are you going to do? You know you're going to have to put him in a home at some point right? When are you going to do that?' My goal is to not to have to put him in a home," said Morgan. "I look at how big he is and how tall he is now at the age of 9 and how strong he is. I'm in support groups on Facebook with other parents with autistic children and I see that they're putting their 12-year-old in a group home because they can't handle it anymore. Nolan's a very nice boy and he can be very loving, but right now he's just so frustrated with his inability to communicate and he doesn't know how to process his anger properly, or his frustration or anxiety, so he lashes out at his caregivers, his family members. I'm hoping that once we have something in play like a dog for Nolan, we can help him learn some of those coping skills so that he doesn't get so angry that he puts his head through a wall anymore," said Morgan.
It is a proven reality that dogs have innate abilities to sense and react to signals, expressions, emotions, smells, maybe even brain waves, blood pressure and heartbeats in humans in ways that can change daily lives. Service dogs trained to assist with autism spectrum take advantage of these abilities.
Morgan hopes a service dog would relieve some of Nolan's frustration and anxiety by forming that intuitive connection that enables the dog to sense and anticipate Nolan's destructive behavior. The dog could then alert Nolan's caregivers by pacing or signaling the change in some way to prevent a meltdown. The dog may even be able to directly intervene by gently licking Nolan or placing its head in Nolan's lap to calm him down, refocus and deescalate the behavior.
For a child with ASD to benefit from a service dog, it comes down to one essential relationship - the child and dog must form their own unique, individual bond.
Training of the right dog takes time, anywhere from a year to three years and then an additional year to 18 months of specific individual training with the specific child. It also explains why a service dog costs so much, typically in the neighborhood of $25,000.
Morgan is in the process of obtaining a dog trained specifically to complement a child with autism from Service Dogs by Warren Retrievers (SDWR), a company located in Madison, Va. SDWR states that it has placed close to 600 service dogs around the world since its inception in 2010. SDWR trains dogs to work specifically with Diabetes, PTSD, Autism Spectrum, Traumatic Brain Injury, and Seizure Disorders. SDWR offers a 100% guarantee on the health and ability of their service dogs.
Morgan chose SDWR for two reasons. One, there are very few organizations that train autism disorder service dogs so the demand exceeds the resources. The closest organization to Morgan is Pawsitivity in St. Paul, but they are booked and do not service clients in Wisconsin. The other reason Morgan chose SDWR is because they are willing to send their trainers to Nolan as opposed to Nolan having to travel to them. The other closest provider of autism dogs is located in Ohio and would require Morgan to transport Nolan there numerous times over the course of months for the training sessions, a requirement Morgan feels is beyond their capability and finances.
If a suitable dog can be located and trained properly, if Morgan can raise the funds and if Nolan and his new companion can form that unique bond, then a number of potentially life-changing benefits primarily for Nolan but Morgan as well can happen.
A properly trained service dog can help a child in a number of ways including having an overall calming effect, helping to find a lost child, redirecting children from self-harm behavior, improving sleep patterns, increasing social interaction, helping with sensory processing disorder and improving reading skill sets. Because dogs communicate in many ways more obviously than people (play-bows, wagging tail, and thirsty panting) an autistic child can recognize and react to those behaviors more easily, helping facilitate the understanding of more complex human communication eventually.
If Morgan is able to raise enough funds to purchase a dog from SDBW, a trainer would begin an 18-month custom training schedule with Nolan and his caregivers.
"We provide the training in their home environment. It can be in their home, the trainers will follow them in their routine whatever that might be, if they're going to the doctor, if they're going to church, if they're going out to eat, wherever their routine takes them. What training is needed for each specific client is determined by what that family wants out of their service dog," said SDBW representative Tracy Stakely.
Trainers deliver the dogs and typically stay for 2-4 days after delivery to get the training started and then return every 3-4 months for additional on-site sessions that last two days each. After the 18-month training period ends, SDBW remains available to clients to answer questions and share advice for as long as necessary.
"We will end up receiving a trained service dog. They will cater the training based on Nolan and what he needs. It will be a combination of a service and a therapy dog so that when he's going into a meltdown we can learn how to calm him down. Hopefully with the help of a service dog, Nolan can learn how to take walks, go to the store with us, maybe even go to school with his dog. The goal would be to be able to take Nolan out in public or even do things at home with him without having to disrupt ours and his daily routines," Morgan said.
The Deer Park Lions Club is teaming up with Extending Friendship Church and Thrivent Financial to host a fundraiser Saturday, Aug. 3 at the Village Park in Deer Park. Refreshments will be available, activities for kids, and a blind silent auction to raise money to help Morgan afford a service dog for Nolan.