Since this blog is a new space to talk about our family’s journey with autism, I wanted to share Sawyer’s story with you. Grab a snack and settle in- this one is gonna be a long one!
In 2012, I thought my life was pretty perfect. My husband and I were living with our two beautiful daughters on post at Fort Campbell, KY as he served our country in the U.S. Army, and I was a stay-at-home mom in my final year of college and looking forward to going back to work in a new career I was passionate about. I had gotten used to being a mom of two and wasn’t looking to add any more babies to our little “brigade”, but you know the saying is true that God works in mysterious ways…
I found out in late August that year that I was pregnant. I was surprised, since we weren’t actively trying for a baby, and a little concerned because I wasn’t sure how I’d juggle three children and a new career. However, my husband and I were elated, and our two girls were super excited to be big sisters to the new baby- especially when we learned in December of that year that the girls would be getting a baby brother! My husband and I were over the moon; we had prayed for a boy to “complete” our little family and we got it!!
Sawyer came to us in April of 2013. I was due to deliver him via C-section on April 15th, but I went into labor in the early morning hours of April 14th. I woke up with horrible pain in my lower stomach, so we went to the hospital. Upon delivering our beautiful baby boy, the nurse informed us that Sawyer had two “true knots” in his umbilical cord, which had cut off his oxygen supply. She told my husband and me that if we had waited even 30 more minutes to come to the hospital, Sawyer probably wouldn’t have survived. From that moment, we knew Sawyer was special- a miracle baby- and the moment he arrived, we were all absolutely smitten with him. He was everybody’s baby, and our whole family absolutely adored him. I remember asking the doctor if the knots in his cord could have given him brain damage, but he said it was too early to tell. Sawyer did fail his hearing test, but otherwise, everything else showed he was a perfectly healthy baby boy.
Early on, I began to notice certain things that were off. Sawyer never made eye contact with me when I would feed him, and it always took several times of calling his name before he would look towards us. He absolutely hated being outside; he would cry so hard if I tried to sit him in the grass, and he seemed to be very bothered by sunlight. Other than his sisters and his cousins, he never seemed to want to interact with other kids and he was always always content to play on his own without sharing his toys with us or anyone else. He was constantly lining his toys up… He didn’t ever seem to play other than to line things up in rows, and when he did play he would hold his toys at eye level, very close to his face, so he could stare at and examine things such as the wheels on his toy cars. He was late reaching his milestones; I remember being at a basketball game, when Sawyer was 9 months old, and he couldn’t hold his own bottle. My cousin remarked “Dang, he can’t hold his own bottle yet?” and I realized she was right; he should have been able to do that by then. It was then that I began to worry…
At 14 months, he wasn’t making any efforts to walk on his own, and he had said “Mama” and “Dada” but then regressed and stopped saying those words. He often made repetitive sounds with his mouth (‘mmmm’ or ‘nananana’ sounds), but made no effort to say any other words, and I also noticed he had a strange obsession with licking metal objects. After talking about my concerns with a close friend, she asked if I had ever considered that Sawyer could possibly be autistic. I hadn’t, but after doing research on the signs of autism in toddlers, I was absolutely floored; I made an appointment with his doctor. She agreed that there was a cause for concern, and she referred us to the early intervention program on post at Fort Campbell. Because Sawyer was so young, we could not test him for autism at that point, so in the beginning he was treated for a developmental delay.
We started early intervention with Sawyer at 15 months. The early intervention team on post was wonderful; they came three times a week to work with Sawyer, and immediately picked up on concerning behaviors. At that point, you weren’t supposed to be allowed to test a child for autism before 2 years old. I had been told by friends that I should be prepared to fight for a diagnosis; the director of autism services on our Army post was notorious for being stubborn about diagnosing children with autism unless he clearly saw multiple signs and symptoms present in his evaluation. However, Sawyer’s early intervention team presented his case to the director, and without even seeing Sawyer in person, he referred us to Vanderbilt Kennedy Center in Nashville, TN for testing- it was that obvious even on paper that Sawyer had all the signs and symptoms for autism spectrum disorder. He was just 19 months old.
We went to Vanderbilt Kennedy Center on November 8, 2014 for Sawyer’s evaluation. We watched through a two-way mirror as Sawyer was tested by the way he interacted with the staff and with toys in the room. After several hours of evaluation, the team at Vanderbilt told us that Sawyer was a “textbook” case of autism: non-verbal, flapping his hands when he got excited, being fixated on certain things (cars, especially!), showing signs of sensory aversions or obsessions, and often times seeming lost in his own world. However, at 22 months he began a wonderful program through Vanderbilt Kennedy Center called The Tadpole Project, in which he underwent extensive Applied Behavior Analysis (ABA) therapy, and within just a few weeks we started seeing a massive improvement in his eye contact, social interaction, and appropriate play with toys. We continued with ABA therapy the entire time we lived in Kentucky, only stopping when my husband and I divorced in 2016 and I moved back to my home state of Missouri with my children. His therapists were absolutely amazing, and I credit them to this day for the reason Sawyer made so much progress in such a short amount of time. They became like family to us, and we were so sad to leave them!
By the time Sawyer started preschool 6 years ago, I worried about how well he would perform in school. I knew he would have no problem with the work; he had proven through his previous therapy to be highly intelligent! Still, I worried about how he would be accepted by his peers. When he began preschool, he still couldn’t talk much and what he did say was very hard to understand. He also still showed very little interest in playing with most kids around his own age. However, he worked hard with his speech teacher and his teacher in the special needs preschool room, and by the time he started kindergarten he was able to be in a “regular” classroom!
Sawyer is now almost 10 years old, and the difference in the child he is today and the child he was 6 years ago is astounding. He went from a closed-off, mostly non-verbal little boy to a warm and open little boy with a huge vocabulary who loves giving hugs and longs to have sleepovers with his friends. The teachers at his school who have been there to watch his progress in the last 6 years are amazed at how far he’s come, and I couldn’t be prouder of him and all he’s accomplished. Most people who interact with him say they would never know he was autistic, but the signs are definitely there. He stims a lot by clearing his throat or making kissing noises into the air (this is a new stim), and he still has very restrictive interests.
Socially, he’s still very immature compared to his peers. One of his favorite things in the world is a YouTube show called Numberblocks, which is a show designed to teach preschoolers how to count; he’s even asked for a Numberblocks birthday party this year. While most of the boys in his grade are into sports and Star Wars, Sawyer mostly couldn’t care less. For this reason, some kids often think he’s “weird” and I’ve watched with my own eyes as he waves excitedly to kids when we see them in public, only for them to ignore him. As his mama, it’s infuriating and heartbreaking; I can’t imagine how it feels for him. I talk to him a lot about asking questions about things other kids are into, instead of just talking about the video games he likes to play, and I’ve asked his teachers during IEP meetings to help him with making friends.
Sawyer is different, and he realizes this- but that’s one of the main reasons we decided to create this blog. He wants people to understand him, and he aches to have a best friend he can have playdates and sleepovers with. So we will tell his story, and explain what autism is and what it means for Sawyer and for us.