Mothering Autism: From Initial Concerns to Preschool, and Everything In Between
[dropcap]W[/dropcap]hen I was eighteen years old, my son, Oliver, entered the world. I was three months shy of graduating high school when his existence was uncovered. Flash forward three years: I am now four months shy of graduating with my Bachelor’s degree. I have been busy with my education, as a young, single mother, but have become far busier since my son was diagnosed with Autism Spectrum Disorder.
My labor commenced directly on Oliver’s due date. I was fortunate enough to spend my labor and delivery at a birth center alongside my mother, doula, and midwife. I abstained from all interventions throughout the powerful process that is birth. He was born a healthy little boy and couldn’t have brought more joy into my life. As time passed, Oliver’s developmental milestones were a tad delayed. At seven months, he still wasn’t rolling over. At nine months, he was still unable to sit unassisted. He didn’t begin crawling until 10 months and didn’t begin walking until 15 months.
I felt worried but tried to reassure myself that all babies develop on their own schedule. Friends and family urged me to avoid stressing over what was most likely nothing. It was when I was around other babies his age when my anxieties set in. It, for some reason, perplexed me that other babies and toddlers didn’t cry when people looked at or spoke to them, not to mention their interest in other children. Oliver, for a very long time, acted as if other children were invisible to him. Presently, at three years old, he is still ambivalent toward other children, for the most part, unless advised to wave or say “Hi”. If a child is too hands on or gets in his space, Oliver develops an intense fear of them.
Back when he was 15 months old, he had a vocabulary of roughly 10 words and then slowly stopped saying one or two of his previously learned words every few days. At 15 months, he danced every time he heard music, played patty cake, and waved to people. Right around that time, his first and most prominent regression took place. He suddenly dropped all of the adorable social behaviors that were normal for him and became very serious and rigid. It was then that he grew more and more antisocial, couldn’t handle change or transitions, and stopped responding to his name. He developed eczema, multiple food allergies, and his bowel movements constantly went back and forth between diarrhea and constipation. He began flapping his hands, toe walking, spinning in circles, crossing/uncrossing his fingers, lining up his toys, and staring at the spinning washing machine. As time went on, it became impossible to take him to grocery stores, restaurants, or community events. Still, to this day, I haven’t been able to successfully visit a restaurant with Oliver since he was six months old.
At the same time that I began noticing these “abnormalities”, I was taking a Developmental Psychology course. I was learning about the early signs of autism, particularly in 0-3-year-olds, and was convinced that I needed to bring my concerns up to his pediatrician at his 18-month well child checkup. I typed up a nine-page list of my concerns and presented it to Oliver’s doctor. She asked me questions from the M-CHAT and the results made her share my fears.
Oliver’s doctor suggested that I look into getting him in for a developmental evaluation by an early intervention center. I struggled to find a center that would serve us because we live so far away from everything. After calling and being denied by roughly 35 centers, I got in touch with the person in charge of all of the early intervention centers in my county and she made sure that someone would amend the rules of their service area. I scheduled an evaluation with the center of my choice and he did, in fact, qualify for a diagnosis of a developmental delay and we promptly started weekly services with a Special Educator. The team that evaluated him referred us to UW’s Autism Center, where a clinical psychologist could perform a diagnostic evaluation. I scheduled the required series of four appointments with said center and attended an intake interview, two evaluations, and a feedback appointment. Oliver’s feedback appointment took place a few days before he was 21 months old and resulted in a diagnosis of Autism Spectrum Disorder, as I suspected.
From 18 months to 21 months, Oliver received basic early intervention services. After receiving his official diagnosis, he was able to receive more services. In addition to his weekly Special Educator visit, he began speech therapy, occupational therapy, and started an autism specific therapy class called CUBS. CUBS stands for Communication, Understanding, Behavior, and Socialization. The class had four other toddlers, under the age of three, and offered in-class speech therapy, occupational therapy, and ABA (applied behavior analysis) therapy. You can get a quick run down on what ABA entails here. Oliver spent nearly a year and a half at his early intervention center and I couldn’t be more grateful that he got in so early and made the development that he did. Oliver’s progress was immortalized by being published in The Seattle Times in December 2016.
Early intervention is exclusively for 0-3-year-olds. Once a child reaches his or her third birthday, their services become the responsibility of their local school district, not including private therapies covered by insurance, if there is a need for additional support. When Oliver turned three, we said our tearful goodbyes to his team of therapists who had become family. Shortly after, he began at a preschool that he absolutely loves. Our local school district, as small and rural as it is, doesn’t have access to the support that Oliver needs to continue thriving. Our school contracted with one that is more equipped, roughly two hours away. He now spends the first half of his day in an ABA focused room with other children on the spectrum and the second half intermixed with normally developing peers. Despite our long hours on the road, Oliver is always very eager to get to school. He talks about school, his teachers, and his “eight friends”, as he says.
A few days ago, while waiting outside the door for his teacher to greet us, one of his friends walked up and whispered to his mom, “Mommy, that’s my friend, Oliver.” There is nothing like hearing those words. My son, who used to be completely blind to even the presence of other children, is now initializing play from time to time and being identified as another child’s friend. While this may seem small, it isn’t something I had ever expected to happen years from now, let alone now.
There have been times where I didn’t think Oliver would ever be able to speak, drink from a sippy cup, eat non-puree foods, focus enough to play, and the list goes on. When I took my son to his initial evaluation, he was banging his head, gagging on foods, walking exclusively on his tippy toes, running in endless circles, rocking from side to side, flapping his hands, and the list goes on. He hated diapering, brushing teeth, washing face, touching certain fabrics, and being touched.
Currently, Oliver isn’t dealing with any of these issues. He is still behind in his speech development, has a small handful of sensory issues, and has a long way to go in the social department, but he has made incredible strides thus far. By being aware and diligent on finding help, I have made sure that Oliver is on the path to being as happy in his future, as possible. Regressions are very possible, but I try to keep adamant and optimistic.
With autism prevalent in 1 in 68 children in the U.S., I highly suggest that all parents who have any concerns, no matter how slight, ask questions and begin advocating for their children as early as possible. The earlier, the better.